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| <div class="HVtqADz6 hu8TEfLP U6k83TfH kr-slate-editor kr-slate-editor-is-directly-focused" data-editable-id="root" contenteditable="false" spellcheck="false" data-coda-ui-id="editable" tabindex="-1"><div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-tjS4Zcwdv2" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">First, thank you for being here and reading this. I appreciate it more than you probably think. Most people simply don’t take the time to get this stuff right, and if you’re a journalist or media producer who is taking that time then I want to thank you profusely.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9QpQK1GvIs" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you take away nothing else from this essay I’d like you to take this: one of the core mottos of our community comes from South African disability rights activism: “</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Nothing About Us Without Us.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">” If you can keep those five words in your mind when writing about Autistic people your journalism is going to get a lot better.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-02MUYrViFN" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you take two things (and let’s be real, I want you to take more than two things but I’m a pragmatist) it’s that </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">you shouldn’t be writing about Autism if you don’t understand the Double Empathy problem</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, covered below.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-apIHf4KIkZ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, if this whole thing is overwhelming,</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> let me please ask that before you bail out you scroll to the end and look at the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-blue-light-bg" data-editable-id="TODO: Need an id?">Resources</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> section</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. I’ve provided links to groups who can help you fact-check and sensitivity-read your work.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZBGpdkyW3j" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">After all, you wouldn’t write about gay people without interviewing gay people, right? You wouldn’t support a women’s rights organization run entirely by men, whose policies directly contravene what the women they’re advocating for say they want, I assume? You wouldn’t listen to the caretaker of a speaking but physically disabled person speak over that person in a story about disability, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OGws9PtHnA" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So remember that we have been systemically excluded from agency in our own lives, in small and large ways, for decades. And understand that when we say “Nothing about us without us” </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">we are not expressing a preference</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, we are setting a boundary in terms of what respectful representation looks like.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-MWaijqVb6o" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Why Should You Listen To Me?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OX8ihLctkA" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’m not a doctor or a researcher. I’m a 38 year old Autistic and ADHD software engineer. That means that I have 38 years of lived experience navigating Autistic and ADHD life. No neurotypical expert who has studied Autism or ADHD has a better window into the lived experience than I do, and no non-Autistic person can understand or relate to our culture in the ways that I can.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-0pG2F8BwCV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But as I’ll argue repeatedly throughout this essay, Autism is not a monolith. I can’t possible speak for all Autistic people, and many will disagree with many of the claims I’m making. Just like any other population we have all sorts of politics, different perspectives and opinions.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gdJmUZqpGL" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">I’m coming to you now as an ambassador one such perspective</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — we call ourselves the </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and while I can’t even claim to speak for the entire NDM I’m going to do my best to share our perspectives on Autism and how to discuss it. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KPvIt5ozVv" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to f</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">inally </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">be included in the conversation. It’s my great hope that a lot of what I say just </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">makes sense</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> once you hear it framed this way. You can always find me to ask me questions on twitter, where I spend all of my free time as </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-xwJjqY-q34" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Recently, </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> promoted and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> talking about marijuana and Autism. Some of the language in the promotions was a bit problematic, and suggested to me that Doctor Gupta may not have spoken with many </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> individuals when preparing this work. So, without any real expectation, I tweeted at Doctor Gupta and asked if he would be open to some gentle feedback about how he was framing and discussing Autism.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-MFkJhgp824" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">To my incredible surprise, Doctor Gupta not only responded via DM but added me to the short list of people he follows on Twitter. He asked if we could have a phone call, so we did, and it went really well from my perspective. Doctor Gupta shared how much he cares about accurately representing patients the way they want to be represented, making it clear that he learned to use person-first language (”person with diabetes”, as opposed to “identity-first language” which would be “diabetic person”) for instance early in his career when covering diabetes. But he then did something I’ve honestly never seen — he reflected for a moment and said that he understood why Autism may not be the same kind of thing as diabetes, and said that it was possible he needed to be educated on the matter.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-FSIMBt6v_w" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We talked about PFL vs IFL, about “severe” autism and about how to reason about self-harming behaviors. Throughout the entire conversation he listened carefully and asked incisive questions to make sure he was understanding what I was saying. He made me feel heard and respected, and I appreciate that. I summarize the interaction in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, if you’re curious.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-V2cqcmQtKn" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What the conversation made me realize is that a lot of folks in the media really </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">want</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to do better but don’t know how. They have experts they call when they want a blurb about Autism, and none of those experts are actually Autistic. Why would Doctor Gupta listen to me over a distinguished chair of the neurology department at some prestigious university when we disagree?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-SRa_0SeCPV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So there was a lot of pressure on me in that phone call to not only represent the Autistic perspective but to argue as to why it was necessary to seek it out. I did my best, but walked away wishing I’d covered so many more things.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-RYDmzWdNCB" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Fortunately, Doctor Gupta promised he’d look over any links I sent him — so I’m drafting this essay partly as a way to provide feedback to Doctor Gupta, but more broadly as a way to help people in the Media understand when they’re being harmful or offensive in the way they talk about us.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-W5VKFzaalH" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">If you are in the media and are not Autistic and are reading this to help inform your reporting, I want to thank you. You are doing more work than almost anyone else in your industry to understand the people you are covering. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’d also like to ask that if you find anything in this document educational to please consider sharing it with your editors and fellow journalists. We </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold" data-editable-id="TODO: Need an id?">need</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> Autistic voices to join the chorus of non-Autistic experts you consult when discussing us if we want to see improvement.</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-sg-6HKgRE7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let’s talk about how to talk about Autism respectfully.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-fvtqWcHOyI" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The first thing you’ll want to do is understand that </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Now, not every Autistic person agrees with this claim — the term “disability” is loaded, and its definition is complex. It’s one of those words that is particularly subject to cultural baggage — it means something a bit different in Europe, for instance, than it means in the United States, in ways that can be hard to quantify.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-7ns1SPbomX" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let me give you this quick pointer: if an autistic person says “</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">” they are correct and you should believe them. If an Autistic person says “Autism is a disability” they are also correct, and you should believe them. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">I release you from the perceived obligation of reconciling these claims — just understand that this is a complex subject and both “Autism” and “Disability” are hard to define in objective terms.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-4y_oQ_j2i8" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But I want to be clear about one thing: to call Autism a disability is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">not</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to call it a pathology. Autism is a valid way of being, and while there may be certain pathologies that only affect Autistic people it’s not the case that we are </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9mwglC4Uz5" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But that doesn’t mean we aren’t disabled, and in American culture at least it’s important to understand the ways in which the disabled community is let down by journalists if we want to understand how to do better by Autistic people. So.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-zawGUhnPb4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">To many people disability </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — disability sounds like a bad word to people who don’t have to deal with it. In reality, somewhere </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> are disabled and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">most</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> humans will spend at least some portion of their life with a disability.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gAGL-qNRC4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A lot of media coverage of Autism fails in the way that news coverage of all disability fails — it uncritically embraces the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> that the author may be feeling. We can feel this when it happens, it’s really obvious. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This may make for journalism that abled readers can relate to more easily, but it does so by treating the disabled people as objects of pity and revulsion rather than as full, complex human beings</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> with their own perspectives.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Q6cduA2Hbf" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There are a lot of ways to learn more about disability, and one way in may be </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> I wrote on twitter that polls abled people about some questions relating to disability and then analyzes their responses. But my key advice here is really simple:</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-N1hfW7EDZP" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Interview Disabled People</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-J7gksXmTQj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">You can mitigate almost all of this (unintentional! understandable!) harm by making sure that your interviews include the actually disabled people, not just the people in their lives. Sometimes this may seem complex — not all Autistic people can speak, for instance, and even if they can they aren’t necessarily treated by caregivers as trusted narrators of their own experiences and you may experience pushback simply for asking for their perspective. It is still your job to seek out authentic and relevant disabled voices for your piece.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-RxqLKzswPX" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: We Are Not A Monolith</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-XDoEKtZ_kW" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Every disabled person is different. Every experience of disability is unique. It’s often not enough to interview a single disabled source, especially if that’s juxtaposed against a dozen abled sources. That way lies tokenism. The truth is if you want bonus points you can find disagreement within the disabled community, and use that to enrich the complexity of your reporting in a way that doesn’t pick sides but recognizes that these issues aren’t black and white.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-08CNyLMTIL" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The Double-Empathy Problem</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZX070YcXRU" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There’s a fascinating bit of research by Damian Milton that up-ends a lot of assumptions that a lot of people make about Autism, and it’s called the “</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-D2Sgw5uxe_" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Let me put this in no uncertain terms:</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> if you do not understand the Double Empathy problem you have no business writing </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-blue-light-bg" data-editable-id="TODO: Need an id?">anything at all</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> about autism for general consumption. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This is not because you are a bad person — it’s because you have missed</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> in Autism research in decades.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-djsjPbU8gC" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The Double-Empathy problem conclusively demonstrates that the communication breakdowns that Autistic people experience </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">are not one-sided</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Rather it turns out that allistic (not autistic) people struggle to understand Autistic people just as much as Autistic people struggle to understand allistic people.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-D8-Zbqq6f-" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">In other words, it is NOT THE CASE that autistic people have a communication deficit; rather, it seems to be the case that the more two people diverge in terms of the way they experience the world the less able to understand each other </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">they both become</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-IpT1uDDey6" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Because most people in the world are not Autistic it seems “obvious” that Autistic people have a communication problem; what’s really mind-blowing is the realization that it’s not a property of Autism but rather a property of expectation mismatch between Autistic and non-Autistic communicators.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-a-Vt2_xq0X" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: It’s Not a Deficit</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-_jMs_YIq0k" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This means that anyone talking about “deficits” in Autistic communication is blaming Autistic people for a systemic problem that exists squarely in the interplay between Autistic and non-Autistic expectations. We are not broken, and we are not responsible for the fact that our communication style is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">different</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. We must be respected as such.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-zkUOSxV4Yy" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Notice the Emotional Labor</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-EMsqabhIfZ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The implications here are staggering. It means that Autistic people have taken the blame for these communication breakdowns wholesale, and we spend our lives trying make up for what we’re told is a deficit on our end.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> Nobody grants us the same benefit of the doubt and interpretive generosity that we are trained to give others — we have to get it right on the first try or we’re seen as problems.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-pfj2gbhEMx" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">You probably learned to refer to disabled people using something called “person-first language”. This means if you’re referring to someone with diabetes you’ll say “Person with Diabetes”, not “Diabetic Person”. This is valid, and many people with e.g. Diabetes want to be referred to this way.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-v2523C-fB-" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">You should always defer to the individual when referring to them</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, because some people feel strongly about this. Some people with Diabetes will prefer to be called Diabetics, even if they’re a minority, and their will should be respected too.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-T4yQ-q3Rr_" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">In the Autistic community we often feel differently about person-first language. Many of us have a lifetime of trauma from parents, caregivers, teachers, friends and partners trying to separate the “problematic” parts of us from the “real” parts of us.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> “Person with Autism” is the language of someone who wants to think of the Autistic person in their life as experiencing an external challenge that can be overcome.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-q8HRzWhjUK" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We overwhelmingly prefer “Autistic Person”, because it turns out our Autism is not some pathology that interferes with the functioning and expression of the “real” us — it is in fact a core part of our identity, and trying to erase that truth is in fact a way to erase important parts of our experience.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nTtLAUoAxm" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Individual Choice Matters</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Ac0xcxGR5f" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">My next “key takeaway” is going to be to tell you that there is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> for “identity-first language” in the Autistic Community</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Please note I am not saying “There is unanimous support”. Plenty of Autistic people DO feel like their Autism is a pathology that they don’t want to identify with, and prefer PFL. Their individual choices must be respected too.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-fvY2pRKuB4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Overwhelming Autistic Preference</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-FQZ-QQwk1k" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That said, most Autistic adults on</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> after </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> s</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">ay that they prefer “Autistic Person” to “Person with Autism”. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">So when you write or talk about Autism in your coverage one thing we all look at is whether you chose to use IFL or PFL. It’s not that choosing PFL is that big a deal in the big picture (though some people feel strongly about it!) — it’s that by choosing PFL you are signaling to your readers that you either don’t know or don’t care that most Autistic adults prefer IFL,</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> and most of us will read your coverage accordingly.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-qeooEVGVR4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">One thing you’ll find as you do your research into the Autistic community is that this is actually a pretty difficult question to answer. One way to answer it is to look at what the DSM5 says — this is how American mental health professionals define Autism. But there’s a problem with the DSM-5 criteria — they’re written entirely as a set of observations of behavior of Autistic children. At no point does the DSM go into motivations, and at no point does the DSM suggest that Autism could be anything other than a pathology. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-veqDoIhPFZ" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you read </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> of Autism you end up seeing Autism as fundamentally alien and unrelateable. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">So I translated it.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to humanize what they’re saying and turn it into a mirror instead of a weapon.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--lyeiQOU7Q" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But note: that’s just my interpretation of their interpretation. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">That’s not how I’d personally </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">define</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> autism. I’d define it today as something like this: “Different things are obvious to me than are obvious to you.”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-y6YcnXMHUh" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you try to get into a more specific definition you run into a </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">: </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">almost everything you can say will have some Autistic person responding and saying “Actually the opposite is true for me!”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> Some autistics are hypersensitive to certain stimuli, some are hyposensitive. Some can’t speak, some don’t stop talking. Some autistics love to socialize, some hate it. Some have high support needs, some don’t have any apparent support needs. “When you’ve met one autistic person you’ve met one autistic person” is the phrase often bandied about.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-SGqD0i2g2w" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That doesn’t mean that we don’t share experiences in common. Most of us struggle to relate to neurotypical people in the ways that neurotypical people relate to each other (see Double Empathy, above). Most of us experience emotions extremely intensely. Most of us have some degree of trauma from a lifetime of being misunderstood. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Many of us struggle with the inability to name our own feelings (called </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">) </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">and many of us have co-occuring conditions ranging from ADHD to Epilepsy to Learning Disabilities, and one common form of Autistic erasure is to conflate the Autistic experience of these co-occuring conditions as making someone “more Autistic”. See below to learn more about so-called “Severe Autism”.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-EIFGS21o-K" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">One place where novel and interesting research is being done is on the subject of </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — basically, Dinah Murray noticed that some brains seem to be optimized for thinking about many things at once and some brains seem to be optimized for concentrating deeply on a single train of thought and posited that many if not most Autistic people (and, interestingly, people with ADHD) seem to be </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">monotropic thinkers</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> in a way that neurotypical people are not. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gR6i_7krSv" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We may struggle, for instance, with talking about something we find interesting while at the same time paying attention to the interest levels, engagement and social cues of the people we’re talking to, while paying attention to the facial expressions we’re making, etc all at the same time, while keeping track of time, etc. Those are all separate threads of thought that we have to remember to attend to manually, and each one interrupts something else. (As a result, being Autistic is in a sense an ongoing exercise in applied phenomenology, but that’s a paper for another time...) </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9JNAshoytB" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of this is subtle, subjective, and manifests differently depending on the individual.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> That’s why Autism is so hard to define — because its outward manifestations are such a horrible way to try to quantify something so purely subjectively experienced. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">? How do we talk about Autism in a way that people can relate to?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-AqUbtZxfET" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Well, an interesting and novel form of emergent Neurodivergent literature is the “list of traits”. It’s important to understand that things like Autism and ADHD and all these other neurotypes, they’re not objectively measurable phenomena they’re subjectively experienced ways of being. So unless someone conforms to an obvious cliche they often have no idea that they’re walking around with a different neurotype until they read something like </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and see aspects of their own life reflected that they’ve never seen before. Often, they just think they were bad at being a person. That sucks!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-8_wj2fTxbo" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Assumptions About Autism Don’t Generalize</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-4cnhGMzJ50" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What this means is that you have to be very careful when making claims about what Autistic people are like. You are probably going to end up referring to some subset of Autistic people in some way that makes a claim that turns out to be wildly false when made against some other subset of Autistic people. Your reporting should reflect this nuance, and you should be open to feedback when you get it wrong. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-SxoC6lLo2Y" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Don’t Just Listen To Me</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-aW2v_s5ffO" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-0qxhtL1XC-" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Key Takeaway: Trust in Subjective Experience</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--Br3QSj7BI" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nobody can prove their Autism to you. Nobody can take a blood test and say “Yep, Autistic!” Autism is a purely subjective experience that can manifest in </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">many very different ways</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and only some of those ways are medically recognized as “Autism”. It’s important to understand that unless you are Autistic you simply Will Not Understand Or Relate To certain Autistic experiences. That’s okay. We don’t understand or relate to all of yours. Embrace the chaos and allow us our truths!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-I-I_yFAzgt" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What About “Severe” Autism?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-MF52QJh9N1" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">“Ok,” you may be patiently thinking, “but I’ve just read a lot of words and what you’re describing doesn’t help me understand how to talk about someone who is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-italic" data-editable-id="TODO: Need an id?">really</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?"> autistic. You know, can’t talk, violent, no empathy, etc. You can’t tell me that Autism is just about perceiving things differently, everyone knows there are real problems!”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KM-WSAGm6l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I hear you, and I understand what you’re getting at. You’ve just interviewed a family of an Autistic kid who can’t speak, maybe self-harms and harms others, and is in a constant state of distress that seems to be getting worse as the kid gets bigger. Soon they’re going to be dangerous to themselves and their caregivers, and nobody really knows what to do about this.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--m6pH6SJTw" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">And it is trying your patience to sit here and listen to me tell you that there’s something harmful in telling the story about the obviously struggling family when they are the ones you most clearly relate to. They ARE suffering! And they OBVIOUSLY care about their Autistic kid! So why not tell their story, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KHqKequQuI" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But if and when you tell that story you need to be careful about how you do it. For instance, just because an Autistic person can’t speak doesn’t mean that their Autism is “severe” — most frequently it means that they’re dealing with </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> that makes it difficult to use the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> for careful coordination in tasks like speaking words.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> These people can and do write, and it turns out their inner lives are just as rich and interesting as ours — they just don’t have access to speech.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-yf8ImWIVkB" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make them “severely autistic”? Or does that make them Autistic with a co-occurring speech disorder? Do they need support for “severe Autism” or do they need support for their Apraxia?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-eXU0YTL4k5" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Similarly, if an Autistic person is also Epileptic that’s going to present in a way where the two conditions inform each other. Seizures may be perceived differently, Autistic hyperfocus may be misinterpreted, etc. In many cases the experience of having both conditions is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">more challenging</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> than just having one or the other.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Vx9vpodaqS" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make people with both Autism and Epilepsy “more autistic”, or does it make them Autistic with co-occurring Epilepsy? Do they need support for “severe Autism” or do they need support for their Epilepsy?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-puAX_sKqMz" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So what if an Autistic person also has Down syndrome? Or, to more accurate reflect the thinking of neurotypical researchers, what if a person with Down syndrome is also Autistic? For the longest time these two were held to be mutually exclusive diagnoses, but now </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-VvbmefHz4_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make people with both Autism and Down syndrome “more autistic”? Does it make their Down syndrome “more severe”? Or is it a complex intersection of two different conditions that inform many of the same subjective experiences?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-99S6_Al_xg" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">It turns out that </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">shows that there’s not really a thing you can point to and say “That! That’s Autism, and there can be more or less of it in a person.”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> That’s not how it works. Some people are Autistic, and that means that different things are obvious to them, and that’s that.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-X5eDPrQPlc" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Some of those people also have sometimes truly debilitating co-occurring conditions. But that’s no different from any other population, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-a-jWi2koFr" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let’s go back to our example above, the family supporting the “severely autistic” child. Is the child “severely autistic”, or does the child have additional unidentified support needs and co-occurring conditions? Are you absolutely certain? If not, please refrain from using phrases like “severe Autism” because they conflate and erase a lot of complexity and nuance and serve ultimately to create a category of Autistic people who are simply written off as irrational and subhuman.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9u3mifk7HX" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, there is no “severe Autism” in the diagnostic criteria, though some diagnosticians insist on using “functioning levels” as a measure for this. A “high functioning” Autistic is someone like me, who doesn’t have many obvious support needs and who you wouldn’t necessarily recognize as Autistic if you met me. We used to diagnose these people with </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> A “Low functioning” autistic is someone like the example kid we’re discussing — they have high support needs and probably some co-occurring conditions.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2DA1ubGL8f" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But both of those terms completely erase the subjective experience of the individual.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> I have days where I am “low functioning” by any meaningful definition (but peoples’ expectations of me don’t change), and that kid has days where he’s “high functioning” (but probably not recognized as such).</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--UewIT1pEu" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So in the Autistic community we don’t use labels like “High Functioning” or “Low Functioning”, we prefer to speak in terms of </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> which acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-t96rywAqqR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: There Is No “Severe” Autism</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-F1-45oTUoE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Using the phrase “severe autism” may do what you intend in terms of conjuring to the public eye a figure of an Autistic person struggling with a number of co-occurring conditions. But use of this phrase conflates those conditions with Autism itself in a way that erases a lot of meaningful and nuanced subjective experience.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nVPpazkSbb" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: No Behavior is Unmotivated</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-UdiE25-7Gv" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That kid hitting himself and others is in severe distress. His behavior is not irrational and is not malicious — he is not trying to cause harm. He is trying to regulate, and probably trying to articulate that he is in distress in the only way he knows how. When we isolate the distressing behavior and dismiss the motivation as mysterious and unknowable we are damning that child to misunderstanding and isolation. The solution here is to recognize that this </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and that the kid is being traumatized by his inability to be understood.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gfTr03nMRq" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Note: tics exist. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">Unintentional</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> behavior exists. But that behavior is always motivated by </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">something</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> even if that something is a neurological compulsion. I’m not saying all behavior is communication — I’m saying it’s a mistake to throw one’s hands up and say “they’re just doing that for no reason” when confronted with a problematic or confusing behavior.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-X6hHFVxB42" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Listen to Nonspeakers</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-8lKVHN1vjC" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Non-speaking Autistic</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> people often </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> (and often </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">) something called </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> (augmentative and alternative communication) to communicate, and will complicate every assumption you’ve ever made about how the brain works, about how society works and about how disability works. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> have to be actively sought out, and they often need help being heard — but they’re there, and if you seek them out you will revolutionize journalistic practice around this whole topic. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-6rxGUznaXi" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“Masking” is a set of behaviors and reactions that an Autistic person performs in order to seem “less Autistic” to other people. It involves things like paying attention to and explicitly controlling our facial expressions, tone of voice, what our arms are doing, etc.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> It means paying attention to the ways other people are able to easily exchange information and catering every interaction to their needs. It means laughing at jokes we don’t find funny and nodding along at stories we don’t understand. It often means, when we’re growing up, reverse-engineering the frankly nonsensical responses of the people around us. It often means a lifetime lived in shame and fear of being “found out” for the horrible offense of being “different”.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2hEOIn3z7Q" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">What this means in practice is that no, not every Autistic person is obviously Autistic</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Many of us are as different from you as can be but do the emotional labor of showing up and “passing” as Neurotypical every day.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-XJV4VPHTxg" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">And yes, this has a cost. Learn more in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and, if you’re Autistic and struggling with this, learn more in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> .</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-pVM0zOC6tJ" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: There Is No Autistic “Look”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Nf-mt8z57_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A common thing that strangers may say to me if I disclose to them is “You don’t look Autistic!” Now, they think they are being kind — they’re telling me “I never would have known that there was something wrong with you!” and, like, that’s not... exactly the compliment they think it is, right? </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-QYggm2kQmR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Anyone Could Be Autistic</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-w6kqNPrr1z" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The fact is we come in all shapes and colors and you may be surprised which people in your life are secretly Autistic — </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">maybe even secretly from themselves. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">We know that most Autistic people are </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">— wouldn’t it be amazing if the piece of journalism YOU wrote helped introduce someone to themself in a way that allowed them to recognize themselves as Autistic for the first time? That’s what we’re working towards, here!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Md6_sDW4in" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Everyone knows Autistic people lack empathy, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Hg0-oooXsm" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This is not only wrong</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">, it’s so painfully and ironically wrong that it’s almost funny.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> But before I get into why it’s a particularly bad example of a claim that doesn’t generalize I want to acknowledge that there ARE Autistic people — just like there are non-Autistic people — who don’t seem to feel empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-lZ4S_nikBC" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Those are still full human beings and still deserving of your love, respect and acceptance. They are not broken, they are who they were born to be and we must make room for them.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-QDNyNf2L3h" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But most Autistic people aren’t like this. There’s </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> than others; if anything, </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — we’re the people you’ll see crying when a stuffed animal is “hurt”, making emotional farewells to inanimate objects on trash day, and going out of our way to understand and accommodate the needs of the people around us. Most of us have experienced an </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">extreme</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> lack of empathy from the people around us for our whole lives, and we don’t want </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">anyone else</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to ever experience that.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-taY9ONlSwE" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So why do we have a reputation as lacking empathy? Because we show empathy differently than Neurotypical people do, and that has been misunderstood by medical professionals and passed off as truth for decades now. We talked about the Double Empathy problem above, but let’s focus more on the ways that that manifests and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">why</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> so many people think Autistic people lack empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2k7Ck-hh4u" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you tell me a story about something bad that happened to you I will most likely respond by telling you a story of the time something similar happened to me. If you are also Autistic you will understand that this is me showing you that I understand what you’re going through and can relate to your challenges. But if you’re neurotypical you will likely interpret this as me making the whole thing “about me”; you may assume I’m choosing to decenter you to cater to some narcissistic tendency I have to make everything center on me.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-GSVe7k1yZz" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Further: a lot of us seem to have an issue where we “absorb” the emotions of the people around us. If you are feeling angry and you engage with me I will start feeling angry. If you are sad I will start feeling sad. If you are joyful I will start feeling joy. It is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">hilarious</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to me that this is considered a “lack” of empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-8ltjz_zhxj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, hyperempathy can be exhausting and excruciating. When you can’t walk past the TV news without an emotional breakdown you eventually learn to start tuning out those things that don’t directly impact you. As a result you may start to appear “uncaring” when the actuality is that you’re protecting yourself from the very real problem of caring too much.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-_1IesK6Ih7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Do you see how this is a fundamental misunderstanding? Autistic people express different things — including empathy!! — in Autistic ways. Because of this, and because the non-Autistic people responsible for documenting and writing about us don’t understand it, we’ve been accused of lacking empathy. Countless undiagnosed hyper-empathic Autistic people think “I have way too much empathy to be Autistic!” and that’s 100% because of how Autistic empathy is talked about.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-3EPJoi4ps7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Autistic Expression</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-E5VQnP_zHr" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When writing about Autistic people be open to the idea that you are misunderstanding their empathy because they aren’t expressing it in the way you would. Pay attention to how much effort the Autistic people you’re speaking to, for instance, put into making sure you understand them. They are doing SO MUCH emotional labor for you, translating their subjective realities into expressions they hope will allow you to understand them. Autistic communication is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">rooted </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">in empathy, because </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"></p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-zSCtpmEEDV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Experts Are Frequently Wrong</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-nl5lPdmMWc" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This should set off a few red flags for you. Anyone you’re interviewing that tells you that Autistic people don’t feel empathy, for instance, simply doesn’t know what they’re talking about. But entire academic subfields have spun up around misunderstandings of what Autism is and what Autistic people experience, and these subfields are all run by non-Autistic individuals doing their best to interpret without asking questions. It’s </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">common</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to discover that everyone from Steven “Autistic People are somewhere between robots and chimpanzees” Pinker to Simon “Autism is an Extreme Male Brain” Baron-Cohen is actually completely full of shit when they talk about this stuff. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-36uGNvIf2D" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Autism and Intersectionality</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-P6t5ZUL0La" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">Autism as a neurotype </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> but is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There are Autistic people of every race, though diagnosis often privileges white people. There are Autistic people of every gender, and in fact Autistic people are far more likely to be trans or otherwise gender nonconforming than non-Autistic people. There are Autistic people of every sexual orientation, every class, every nationality and every religion.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-i_rJA912pR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of these categories are social constructs. That does not mean that they’re not real — hell, Hydrogen is a social construct — but it does mean that the way we relate to these concepts may be different than you expect.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-WqxGXxVyFk" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What that means is that it’s important to understand the concept of </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> as developed by Black Feminists over the past few decades</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Intersectionality is the acknowledgement that different axes of oppression compound, confound and inform each other in ways that give rise to emergent complexity and unique expression of identity. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A Black man and a Black woman are going to have very different experiences, and when you include things like sexuality and disability into the mix it turns out that sussing out identity gets pretty complicated.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OMqYuhclad" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of this holds when we add Autism. To be Autistic and Male is to be similar in some ways and different in other ways than someone who is Neurotypical and Male: even our very basic experience of very basic categories is complicated and informed by our neurodiversity. Don’t even get me started on </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">how </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">this</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">white people get called “Autistic” and Black people are often diagnosed with “Oppositional Defiant Disorder”, for instance, </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-rPjQZ-eOTH" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Key Takeaway: Seek Out Autistic People of Color</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OmvKnLSV7F" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Actively seek out and amplify </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">multiply-marginalized Autistic voices like </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> If your journalism talks to five Autistic adults you’re way ahead of the curve, but if they’re all white then you’re falling behind in another way that’s just as important. We </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">all</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> need to be heard and recognized as fully human. Bonus points if you ask about how many undiagnosed Autistic people of color are currently sitting in American prison cells.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-0aR1lhsM0l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Neuroqueerness</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-X0lk0KNNHE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nick Walker argues persuasively that to be neurodivergent is in some sense to be queer. She frames this using the word “Neuroqueer” and defines what she means in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Some Autistic people go farther, and claim that because of the way Autism intersects with things like Gender and Sexuality that to be Autistic is intrinsically to be queer; this site hosts an essay making that very case, here: </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-58fNeYBw6l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Diagnostic Privilege</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-hfsXYQUyrw" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The diagnostic criteria for Autism were</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. The further you are from that category the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, even by well-intentioned professionals. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This is one reason why </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">; nobody is making this up, but not everyone will be believed.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nA66T9X-PL" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: We Are Everywhere</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZhLB2YwDCE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Every community, every demographic, has Autistic members. Remember that we exist everywhere, and we’re reading what you’re writing. It’s easy to think of us as “other”, as a separate category distinct from whatever group you’re writing about; instead, how does your writing change if you recognize that there are Autistic people present in the demographic you’re covering?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-HGsgByMl-X" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nothing About Us Without Us</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-nfEYEXxn5n" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you’ve read this far thank you very much. I hope I’ve provided enough information here to at least complicate your sense of what Autism is, and to help you understand the ways in which reductive coverage of Autistic people does more harm than good. We are a complex invisible diaspora of extremes, and anything you say about one of us will be false for another.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5TGOQOn78y" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If there’s one key takeaway I want you to have from this article it’s this: that our community’s slogan, “Nothing About Us Without Us”, is not only a concise summary of our policy positions but a commitment to self-determination with or without the help of the people around us. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-lL0UT4Wzhf" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">And here’s where that gets complicated, because as you read this whole essay you were getting one relatively privileged Autistic person’s perspective on Autism. I’m a mostly-cis mostly-straight white dude with a high paying tech job and a lot of resources to spend on healing, recovering and processing my own mental health. But I can’t </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">possibly</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> speak for all Autistic people, and if you’ve been reading along you’ll understand why.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-yJFKiFJphk" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-red-light-bg" data-editable-id="TODO: Need an id?">The fact is that there exist Autistic people who would disagree with any given claim I made in this article.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> They exist, and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">while I obviously disagree with them it is a </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">core value of ours</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> that they be acknowledged and included in the conversation so that they can represent themselves.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9pexBTmkro" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This only works when we stop trying to find the One Right Way to think and talk about Autism and instead accept that it’s a complex multifaceted dynamic system that can sustain many interpretations, and that a part of supporting the Autistic people around you is supporting those that you disagree with, too. And that’s complex and takes a long time to sit with.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-TuWCv3cp8K" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">We need allies in this fight, and one easy way to be an ally is to center Autistic people in your reporting when that’s relevant.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> We aren’t objects of pity, we aren’t challenges sent from heaven to test our parents, we aren’t serial killers waiting to break. We are mostly patient, tired, misunderstood and struggling.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZUm9QkRwh_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This document was originally created on December 19, 2021. It lives in a constant state of revision, so there’s no real “final” draft. If you like it, please check out my other </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> on this site. I also have a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> section with links to useful things for Neurodivergent people, and a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> list for tracking your favorite Neurodivergent twitter accounts.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-C-5r5TXPsJ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">More importantly, though! Here are some links to Autistic-run Autism organizations. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">If and when you write about Autism in major media, if and when you express opinions about Autism in a medical or professional context, if and when you teach about Autism, please make sure that your perspective is informed by fact-checking with these people.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5TdmEqxmxj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This is not optional, this is the right thing to do.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-j6Y1Jxjnhb" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">I want to draw your attention to something, here. I’m giving you a list of organizations to look at for resources about Autism and there are some conspicuous absences. You’ve probably never heard of Neuroclastic, but you’re probably wondering why Autism Speaks isn’t on this list, or NEXT for Autism, or Autistica — those you’ve probably heard about, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-NtTwhJWK_7" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">I hope, after reading this essay, you can understand the frustration of the Autistic community at the very idea that the loudest voice in most discussions of Autism at the policy, communication and research level is a group of non-Autistic people who called themselves, of all things, “Autism Speaks”. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">Not only is their entire framing of Autism pathologizing and negative but they promote a form of behavioral control of Autistic children called “ABA”. Many Autistic adults have said that going through ABA gave them PTSD, and it’s worth exploring why ABA is so well-established and highly promoted — but that’s beyond the scope of this document.</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5i6l7gQgQl" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">If you’re familiar with the Autistic community you may also notice that ASAN is not listed. ASAN has done outstanding work, but pending further community engagement around accountability and transparency I can’t currently recommend them at the expense of other orgs. They’re currently expanding their leadership to include more people of color and are working on addressing some major critical feedback they’ve received. Once addressed I’ll reconsider adding them to this list - but in the interest of inclusivity, if you are just discovering this space you should know that ASAN exists and is a leader in the Autistic community.</p></div> | |||
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| title: How To Talk About Autism Respectfully | |||
| url: https://coda.io/@mykola-bilokonsky/public-neurodiversity-support-center/how-to-talk-about-autism-respectfully-84 | |||
| hash_url: 232df2405c016899b63a060ca2e23cbd | |||
| <div class="HVtqADz6 hu8TEfLP U6k83TfH kr-slate-editor kr-slate-editor-is-directly-focused" data-editable-id="root" contenteditable="false" spellcheck="false" data-coda-ui-id="editable" tabindex="-1"><div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-tjS4Zcwdv2" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">First, thank you for being here and reading this. I appreciate it more than you probably think. Most people simply don’t take the time to get this stuff right, and if you’re a journalist or media producer who is taking that time then I want to thank you profusely.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9QpQK1GvIs" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you take away nothing else from this essay I’d like you to take this: one of the core mottos of our community comes from South African disability rights activism: “</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Nothing About Us Without Us.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">” If you can keep those five words in your mind when writing about Autistic people your journalism is going to get a lot better.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-02MUYrViFN" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you take two things (and let’s be real, I want you to take more than two things but I’m a pragmatist) it’s that </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">you shouldn’t be writing about Autism if you don’t understand the Double Empathy problem</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, covered below.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-apIHf4KIkZ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, if this whole thing is overwhelming,</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> let me please ask that before you bail out you scroll to the end and look at the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-blue-light-bg" data-editable-id="TODO: Need an id?">Resources</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> section</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. I’ve provided links to groups who can help you fact-check and sensitivity-read your work.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZBGpdkyW3j" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">After all, you wouldn’t write about gay people without interviewing gay people, right? You wouldn’t support a women’s rights organization run entirely by men, whose policies directly contravene what the women they’re advocating for say they want, I assume? You wouldn’t listen to the caretaker of a speaking but physically disabled person speak over that person in a story about disability, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OGws9PtHnA" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So remember that we have been systemically excluded from agency in our own lives, in small and large ways, for decades. And understand that when we say “Nothing about us without us” </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">we are not expressing a preference</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, we are setting a boundary in terms of what respectful representation looks like.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-MWaijqVb6o" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Why Should You Listen To Me?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OX8ihLctkA" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’m not a doctor or a researcher. I’m a 38 year old Autistic and ADHD software engineer. That means that I have 38 years of lived experience navigating Autistic and ADHD life. No neurotypical expert who has studied Autism or ADHD has a better window into the lived experience than I do, and no non-Autistic person can understand or relate to our culture in the ways that I can.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-0pG2F8BwCV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But as I’ll argue repeatedly throughout this essay, Autism is not a monolith. I can’t possible speak for all Autistic people, and many will disagree with many of the claims I’m making. Just like any other population we have all sorts of politics, different perspectives and opinions.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gdJmUZqpGL" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">I’m coming to you now as an ambassador one such perspective</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — we call ourselves the </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and while I can’t even claim to speak for the entire NDM I’m going to do my best to share our perspectives on Autism and how to discuss it. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KPvIt5ozVv" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’m not here to present you with an authoritative definition of Autism — I’m here to complicate your narratives in a way that makes room for me and people like me to f</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">inally </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">be included in the conversation. It’s my great hope that a lot of what I say just </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">makes sense</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> once you hear it framed this way. You can always find me to ask me questions on twitter, where I spend all of my free time as </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-xwJjqY-q34" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Recently, </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> promoted and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> talking about marijuana and Autism. Some of the language in the promotions was a bit problematic, and suggested to me that Doctor Gupta may not have spoken with many </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> individuals when preparing this work. So, without any real expectation, I tweeted at Doctor Gupta and asked if he would be open to some gentle feedback about how he was framing and discussing Autism.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-MFkJhgp824" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">To my incredible surprise, Doctor Gupta not only responded via DM but added me to the short list of people he follows on Twitter. He asked if we could have a phone call, so we did, and it went really well from my perspective. Doctor Gupta shared how much he cares about accurately representing patients the way they want to be represented, making it clear that he learned to use person-first language (”person with diabetes”, as opposed to “identity-first language” which would be “diabetic person”) for instance early in his career when covering diabetes. But he then did something I’ve honestly never seen — he reflected for a moment and said that he understood why Autism may not be the same kind of thing as diabetes, and said that it was possible he needed to be educated on the matter.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-FSIMBt6v_w" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We talked about PFL vs IFL, about “severe” autism and about how to reason about self-harming behaviors. Throughout the entire conversation he listened carefully and asked incisive questions to make sure he was understanding what I was saying. He made me feel heard and respected, and I appreciate that. I summarize the interaction in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, if you’re curious.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-V2cqcmQtKn" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What the conversation made me realize is that a lot of folks in the media really </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">want</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to do better but don’t know how. They have experts they call when they want a blurb about Autism, and none of those experts are actually Autistic. Why would Doctor Gupta listen to me over a distinguished chair of the neurology department at some prestigious university when we disagree?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-SRa_0SeCPV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So there was a lot of pressure on me in that phone call to not only represent the Autistic perspective but to argue as to why it was necessary to seek it out. I did my best, but walked away wishing I’d covered so many more things.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-RYDmzWdNCB" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Fortunately, Doctor Gupta promised he’d look over any links I sent him — so I’m drafting this essay partly as a way to provide feedback to Doctor Gupta, but more broadly as a way to help people in the Media understand when they’re being harmful or offensive in the way they talk about us.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-W5VKFzaalH" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">If you are in the media and are not Autistic and are reading this to help inform your reporting, I want to thank you. You are doing more work than almost anyone else in your industry to understand the people you are covering. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I’d also like to ask that if you find anything in this document educational to please consider sharing it with your editors and fellow journalists. We </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold" data-editable-id="TODO: Need an id?">need</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> Autistic voices to join the chorus of non-Autistic experts you consult when discussing us if we want to see improvement.</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-sg-6HKgRE7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let’s talk about how to talk about Autism respectfully.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-fvtqWcHOyI" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The first thing you’ll want to do is understand that </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Now, not every Autistic person agrees with this claim — the term “disability” is loaded, and its definition is complex. It’s one of those words that is particularly subject to cultural baggage — it means something a bit different in Europe, for instance, than it means in the United States, in ways that can be hard to quantify.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-7ns1SPbomX" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let me give you this quick pointer: if an autistic person says “</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">” they are correct and you should believe them. If an Autistic person says “Autism is a disability” they are also correct, and you should believe them. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">I release you from the perceived obligation of reconciling these claims — just understand that this is a complex subject and both “Autism” and “Disability” are hard to define in objective terms.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-4y_oQ_j2i8" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But I want to be clear about one thing: to call Autism a disability is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">not</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to call it a pathology. Autism is a valid way of being, and while there may be certain pathologies that only affect Autistic people it’s not the case that we are </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9mwglC4Uz5" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But that doesn’t mean we aren’t disabled, and in American culture at least it’s important to understand the ways in which the disabled community is let down by journalists if we want to understand how to do better by Autistic people. So.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-zawGUhnPb4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">To many people disability </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — disability sounds like a bad word to people who don’t have to deal with it. In reality, somewhere </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> are disabled and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">most</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> humans will spend at least some portion of their life with a disability.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gAGL-qNRC4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A lot of media coverage of Autism fails in the way that news coverage of all disability fails — it uncritically embraces the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> that the author may be feeling. We can feel this when it happens, it’s really obvious. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This may make for journalism that abled readers can relate to more easily, but it does so by treating the disabled people as objects of pity and revulsion rather than as full, complex human beings</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> with their own perspectives.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Q6cduA2Hbf" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There are a lot of ways to learn more about disability, and one way in may be </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> I wrote on twitter that polls abled people about some questions relating to disability and then analyzes their responses. But my key advice here is really simple:</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-N1hfW7EDZP" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Interview Disabled People</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-J7gksXmTQj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">You can mitigate almost all of this (unintentional! understandable!) harm by making sure that your interviews include the actually disabled people, not just the people in their lives. Sometimes this may seem complex — not all Autistic people can speak, for instance, and even if they can they aren’t necessarily treated by caregivers as trusted narrators of their own experiences and you may experience pushback simply for asking for their perspective. It is still your job to seek out authentic and relevant disabled voices for your piece.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-RxqLKzswPX" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: We Are Not A Monolith</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-XDoEKtZ_kW" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Every disabled person is different. Every experience of disability is unique. It’s often not enough to interview a single disabled source, especially if that’s juxtaposed against a dozen abled sources. That way lies tokenism. The truth is if you want bonus points you can find disagreement within the disabled community, and use that to enrich the complexity of your reporting in a way that doesn’t pick sides but recognizes that these issues aren’t black and white.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-08CNyLMTIL" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The Double-Empathy Problem</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZX070YcXRU" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There’s a fascinating bit of research by Damian Milton that up-ends a lot of assumptions that a lot of people make about Autism, and it’s called the “</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-D2Sgw5uxe_" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Let me put this in no uncertain terms:</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> if you do not understand the Double Empathy problem you have no business writing </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-blue-light-bg" data-editable-id="TODO: Need an id?">anything at all</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?"> about autism for general consumption. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This is not because you are a bad person — it’s because you have missed</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> in Autism research in decades.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-djsjPbU8gC" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The Double-Empathy problem conclusively demonstrates that the communication breakdowns that Autistic people experience </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">are not one-sided</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Rather it turns out that allistic (not autistic) people struggle to understand Autistic people just as much as Autistic people struggle to understand allistic people.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-D8-Zbqq6f-" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">In other words, it is NOT THE CASE that autistic people have a communication deficit; rather, it seems to be the case that the more two people diverge in terms of the way they experience the world the less able to understand each other </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">they both become</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-IpT1uDDey6" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Because most people in the world are not Autistic it seems “obvious” that Autistic people have a communication problem; what’s really mind-blowing is the realization that it’s not a property of Autism but rather a property of expectation mismatch between Autistic and non-Autistic communicators.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-a-Vt2_xq0X" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: It’s Not a Deficit</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-_jMs_YIq0k" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This means that anyone talking about “deficits” in Autistic communication is blaming Autistic people for a systemic problem that exists squarely in the interplay between Autistic and non-Autistic expectations. We are not broken, and we are not responsible for the fact that our communication style is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">different</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. We must be respected as such.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-zkUOSxV4Yy" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Notice the Emotional Labor</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-EMsqabhIfZ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The implications here are staggering. It means that Autistic people have taken the blame for these communication breakdowns wholesale, and we spend our lives trying make up for what we’re told is a deficit on our end.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> Nobody grants us the same benefit of the doubt and interpretive generosity that we are trained to give others — we have to get it right on the first try or we’re seen as problems.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-pfj2gbhEMx" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">You probably learned to refer to disabled people using something called “person-first language”. This means if you’re referring to someone with diabetes you’ll say “Person with Diabetes”, not “Diabetic Person”. This is valid, and many people with e.g. Diabetes want to be referred to this way.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-v2523C-fB-" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">You should always defer to the individual when referring to them</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, because some people feel strongly about this. Some people with Diabetes will prefer to be called Diabetics, even if they’re a minority, and their will should be respected too.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-T4yQ-q3Rr_" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">In the Autistic community we often feel differently about person-first language. Many of us have a lifetime of trauma from parents, caregivers, teachers, friends and partners trying to separate the “problematic” parts of us from the “real” parts of us.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> “Person with Autism” is the language of someone who wants to think of the Autistic person in their life as experiencing an external challenge that can be overcome.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-q8HRzWhjUK" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We overwhelmingly prefer “Autistic Person”, because it turns out our Autism is not some pathology that interferes with the functioning and expression of the “real” us — it is in fact a core part of our identity, and trying to erase that truth is in fact a way to erase important parts of our experience.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nTtLAUoAxm" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Individual Choice Matters</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Ac0xcxGR5f" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">My next “key takeaway” is going to be to tell you that there is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> for “identity-first language” in the Autistic Community</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Please note I am not saying “There is unanimous support”. Plenty of Autistic people DO feel like their Autism is a pathology that they don’t want to identify with, and prefer PFL. Their individual choices must be respected too.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-fvY2pRKuB4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Overwhelming Autistic Preference</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-FQZ-QQwk1k" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That said, most Autistic adults on</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> after </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> s</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">ay that they prefer “Autistic Person” to “Person with Autism”. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">So when you write or talk about Autism in your coverage one thing we all look at is whether you chose to use IFL or PFL. It’s not that choosing PFL is that big a deal in the big picture (though some people feel strongly about it!) — it’s that by choosing PFL you are signaling to your readers that you either don’t know or don’t care that most Autistic adults prefer IFL,</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> and most of us will read your coverage accordingly.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-qeooEVGVR4" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">One thing you’ll find as you do your research into the Autistic community is that this is actually a pretty difficult question to answer. One way to answer it is to look at what the DSM5 says — this is how American mental health professionals define Autism. But there’s a problem with the DSM-5 criteria — they’re written entirely as a set of observations of behavior of Autistic children. At no point does the DSM go into motivations, and at no point does the DSM suggest that Autism could be anything other than a pathology. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-veqDoIhPFZ" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you read </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> of Autism you end up seeing Autism as fundamentally alien and unrelateable. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">So I translated it.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to humanize what they’re saying and turn it into a mirror instead of a weapon.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--lyeiQOU7Q" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But note: that’s just my interpretation of their interpretation. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">That’s not how I’d personally </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">define</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> autism. I’d define it today as something like this: “Different things are obvious to me than are obvious to you.”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-y6YcnXMHUh" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you try to get into a more specific definition you run into a </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">: </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">almost everything you can say will have some Autistic person responding and saying “Actually the opposite is true for me!”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> Some autistics are hypersensitive to certain stimuli, some are hyposensitive. Some can’t speak, some don’t stop talking. Some autistics love to socialize, some hate it. Some have high support needs, some don’t have any apparent support needs. “When you’ve met one autistic person you’ve met one autistic person” is the phrase often bandied about.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-SGqD0i2g2w" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That doesn’t mean that we don’t share experiences in common. Most of us struggle to relate to neurotypical people in the ways that neurotypical people relate to each other (see Double Empathy, above). Most of us experience emotions extremely intensely. Most of us have some degree of trauma from a lifetime of being misunderstood. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Many of us struggle with the inability to name our own feelings (called </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">) </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">and many of us have co-occuring conditions ranging from ADHD to Epilepsy to Learning Disabilities, and one common form of Autistic erasure is to conflate the Autistic experience of these co-occuring conditions as making someone “more Autistic”. See below to learn more about so-called “Severe Autism”.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-EIFGS21o-K" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">One place where novel and interesting research is being done is on the subject of </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — basically, Dinah Murray noticed that some brains seem to be optimized for thinking about many things at once and some brains seem to be optimized for concentrating deeply on a single train of thought and posited that many if not most Autistic people (and, interestingly, people with ADHD) seem to be </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">monotropic thinkers</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> in a way that neurotypical people are not. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gR6i_7krSv" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">We may struggle, for instance, with talking about something we find interesting while at the same time paying attention to the interest levels, engagement and social cues of the people we’re talking to, while paying attention to the facial expressions we’re making, etc all at the same time, while keeping track of time, etc. Those are all separate threads of thought that we have to remember to attend to manually, and each one interrupts something else. (As a result, being Autistic is in a sense an ongoing exercise in applied phenomenology, but that’s a paper for another time...) </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9JNAshoytB" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of this is subtle, subjective, and manifests differently depending on the individual.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> That’s why Autism is so hard to define — because its outward manifestations are such a horrible way to try to quantify something so purely subjectively experienced. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">? How do we talk about Autism in a way that people can relate to?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-AqUbtZxfET" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Well, an interesting and novel form of emergent Neurodivergent literature is the “list of traits”. It’s important to understand that things like Autism and ADHD and all these other neurotypes, they’re not objectively measurable phenomena they’re subjectively experienced ways of being. So unless someone conforms to an obvious cliche they often have no idea that they’re walking around with a different neurotype until they read something like </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and see aspects of their own life reflected that they’ve never seen before. Often, they just think they were bad at being a person. That sucks!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-8_wj2fTxbo" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Assumptions About Autism Don’t Generalize</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-4cnhGMzJ50" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What this means is that you have to be very careful when making claims about what Autistic people are like. You are probably going to end up referring to some subset of Autistic people in some way that makes a claim that turns out to be wildly false when made against some other subset of Autistic people. Your reporting should reflect this nuance, and you should be open to feedback when you get it wrong. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-SxoC6lLo2Y" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Don’t Just Listen To Me</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-aW2v_s5ffO" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I really appreciate you taking the time to read this — but I am only one Autistic voice. What I hope you’ll walk away with is an understanding that every Autistic person you interview will give you a unique perspective into what Autism is, how it manifests and what kinds of challenges it’s associated with. Each of these perspectives is as valid as any other.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-0qxhtL1XC-" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Key Takeaway: Trust in Subjective Experience</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--Br3QSj7BI" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nobody can prove their Autism to you. Nobody can take a blood test and say “Yep, Autistic!” Autism is a purely subjective experience that can manifest in </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">many very different ways</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and only some of those ways are medically recognized as “Autism”. It’s important to understand that unless you are Autistic you simply Will Not Understand Or Relate To certain Autistic experiences. That’s okay. We don’t understand or relate to all of yours. Embrace the chaos and allow us our truths!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-I-I_yFAzgt" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What About “Severe” Autism?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-MF52QJh9N1" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">“Ok,” you may be patiently thinking, “but I’ve just read a lot of words and what you’re describing doesn’t help me understand how to talk about someone who is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-bold kr-italic" data-editable-id="TODO: Need an id?">really</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?"> autistic. You know, can’t talk, violent, no empathy, etc. You can’t tell me that Autism is just about perceiving things differently, everyone knows there are real problems!”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KM-WSAGm6l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">I hear you, and I understand what you’re getting at. You’ve just interviewed a family of an Autistic kid who can’t speak, maybe self-harms and harms others, and is in a constant state of distress that seems to be getting worse as the kid gets bigger. Soon they’re going to be dangerous to themselves and their caregivers, and nobody really knows what to do about this.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--m6pH6SJTw" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">And it is trying your patience to sit here and listen to me tell you that there’s something harmful in telling the story about the obviously struggling family when they are the ones you most clearly relate to. They ARE suffering! And they OBVIOUSLY care about their Autistic kid! So why not tell their story, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-KHqKequQuI" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But if and when you tell that story you need to be careful about how you do it. For instance, just because an Autistic person can’t speak doesn’t mean that their Autism is “severe” — most frequently it means that they’re dealing with </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> that makes it difficult to use the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> for careful coordination in tasks like speaking words.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> These people can and do write, and it turns out their inner lives are just as rich and interesting as ours — they just don’t have access to speech.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-yf8ImWIVkB" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make them “severely autistic”? Or does that make them Autistic with a co-occurring speech disorder? Do they need support for “severe Autism” or do they need support for their Apraxia?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-eXU0YTL4k5" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Similarly, if an Autistic person is also Epileptic that’s going to present in a way where the two conditions inform each other. Seizures may be perceived differently, Autistic hyperfocus may be misinterpreted, etc. In many cases the experience of having both conditions is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">more challenging</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> than just having one or the other.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Vx9vpodaqS" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make people with both Autism and Epilepsy “more autistic”, or does it make them Autistic with co-occurring Epilepsy? Do they need support for “severe Autism” or do they need support for their Epilepsy?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-puAX_sKqMz" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So what if an Autistic person also has Down syndrome? Or, to more accurate reflect the thinking of neurotypical researchers, what if a person with Down syndrome is also Autistic? For the longest time these two were held to be mutually exclusive diagnoses, but now </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-VvbmefHz4_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Does that make people with both Autism and Down syndrome “more autistic”? Does it make their Down syndrome “more severe”? Or is it a complex intersection of two different conditions that inform many of the same subjective experiences?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-99S6_Al_xg" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">It turns out that </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">shows that there’s not really a thing you can point to and say “That! That’s Autism, and there can be more or less of it in a person.”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> That’s not how it works. Some people are Autistic, and that means that different things are obvious to them, and that’s that.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-X5eDPrQPlc" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Some of those people also have sometimes truly debilitating co-occurring conditions. But that’s no different from any other population, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-a-jWi2koFr" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So let’s go back to our example above, the family supporting the “severely autistic” child. Is the child “severely autistic”, or does the child have additional unidentified support needs and co-occurring conditions? Are you absolutely certain? If not, please refrain from using phrases like “severe Autism” because they conflate and erase a lot of complexity and nuance and serve ultimately to create a category of Autistic people who are simply written off as irrational and subhuman.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9u3mifk7HX" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, there is no “severe Autism” in the diagnostic criteria, though some diagnosticians insist on using “functioning levels” as a measure for this. A “high functioning” Autistic is someone like me, who doesn’t have many obvious support needs and who you wouldn’t necessarily recognize as Autistic if you met me. We used to diagnose these people with </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> A “Low functioning” autistic is someone like the example kid we’re discussing — they have high support needs and probably some co-occurring conditions.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2DA1ubGL8f" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But both of those terms completely erase the subjective experience of the individual.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> I have days where I am “low functioning” by any meaningful definition (but peoples’ expectations of me don’t change), and that kid has days where he’s “high functioning” (but probably not recognized as such).</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl--UewIT1pEu" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So in the Autistic community we don’t use labels like “High Functioning” or “Low Functioning”, we prefer to speak in terms of </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">”</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> which acknowledges that sometimes we do need support, acknowledges that our support needs can be variable, and doesn’t define us or our autism in a deficit-centered way.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-t96rywAqqR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: There Is No “Severe” Autism</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-F1-45oTUoE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Using the phrase “severe autism” may do what you intend in terms of conjuring to the public eye a figure of an Autistic person struggling with a number of co-occurring conditions. But use of this phrase conflates those conditions with Autism itself in a way that erases a lot of meaningful and nuanced subjective experience.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nVPpazkSbb" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: No Behavior is Unmotivated</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-UdiE25-7Gv" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">That kid hitting himself and others is in severe distress. His behavior is not irrational and is not malicious — he is not trying to cause harm. He is trying to regulate, and probably trying to articulate that he is in distress in the only way he knows how. When we isolate the distressing behavior and dismiss the motivation as mysterious and unknowable we are damning that child to misunderstanding and isolation. The solution here is to recognize that this </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, and that the kid is being traumatized by his inability to be understood.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-gfTr03nMRq" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Note: tics exist. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">Unintentional</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> behavior exists. But that behavior is always motivated by </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">something</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> even if that something is a neurological compulsion. I’m not saying all behavior is communication — I’m saying it’s a mistake to throw one’s hands up and say “they’re just doing that for no reason” when confronted with a problematic or confusing behavior.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-X6hHFVxB42" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Listen to Nonspeakers</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-8lKVHN1vjC" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Non-speaking Autistic</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> people often </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> (and often </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">) something called </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> (augmentative and alternative communication) to communicate, and will complicate every assumption you’ve ever made about how the brain works, about how society works and about how disability works. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> have to be actively sought out, and they often need help being heard — but they’re there, and if you seek them out you will revolutionize journalistic practice around this whole topic. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-6rxGUznaXi" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">“Masking” is a set of behaviors and reactions that an Autistic person performs in order to seem “less Autistic” to other people. It involves things like paying attention to and explicitly controlling our facial expressions, tone of voice, what our arms are doing, etc.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> It means paying attention to the ways other people are able to easily exchange information and catering every interaction to their needs. It means laughing at jokes we don’t find funny and nodding along at stories we don’t understand. It often means, when we’re growing up, reverse-engineering the frankly nonsensical responses of the people around us. It often means a lifetime lived in shame and fear of being “found out” for the horrible offense of being “different”.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2hEOIn3z7Q" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">What this means in practice is that no, not every Autistic person is obviously Autistic</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Many of us are as different from you as can be but do the emotional labor of showing up and “passing” as Neurotypical every day.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-XJV4VPHTxg" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">And yes, this has a cost. Learn more in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and, if you’re Autistic and struggling with this, learn more in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> .</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-pVM0zOC6tJ" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: There Is No Autistic “Look”</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Nf-mt8z57_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A common thing that strangers may say to me if I disclose to them is “You don’t look Autistic!” Now, they think they are being kind — they’re telling me “I never would have known that there was something wrong with you!” and, like, that’s not... exactly the compliment they think it is, right? </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-QYggm2kQmR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Anyone Could Be Autistic</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-w6kqNPrr1z" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The fact is we come in all shapes and colors and you may be surprised which people in your life are secretly Autistic — </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">maybe even secretly from themselves. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">We know that most Autistic people are </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">— wouldn’t it be amazing if the piece of journalism YOU wrote helped introduce someone to themself in a way that allowed them to recognize themselves as Autistic for the first time? That’s what we’re working towards, here!</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Md6_sDW4in" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Everyone knows Autistic people lack empathy, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-Hg0-oooXsm" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This is not only wrong</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">, it’s so painfully and ironically wrong that it’s almost funny.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> But before I get into why it’s a particularly bad example of a claim that doesn’t generalize I want to acknowledge that there ARE Autistic people — just like there are non-Autistic people — who don’t seem to feel empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-lZ4S_nikBC" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Those are still full human beings and still deserving of your love, respect and acceptance. They are not broken, they are who they were born to be and we must make room for them.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-QDNyNf2L3h" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">But most Autistic people aren’t like this. There’s </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> than others; if anything, </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — we’re the people you’ll see crying when a stuffed animal is “hurt”, making emotional farewells to inanimate objects on trash day, and going out of our way to understand and accommodate the needs of the people around us. Most of us have experienced an </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">extreme</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> lack of empathy from the people around us for our whole lives, and we don’t want </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">anyone else</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to ever experience that.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-taY9ONlSwE" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">So why do we have a reputation as lacking empathy? Because we show empathy differently than Neurotypical people do, and that has been misunderstood by medical professionals and passed off as truth for decades now. We talked about the Double Empathy problem above, but let’s focus more on the ways that that manifests and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">why</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> so many people think Autistic people lack empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-2k7Ck-hh4u" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When you tell me a story about something bad that happened to you I will most likely respond by telling you a story of the time something similar happened to me. If you are also Autistic you will understand that this is me showing you that I understand what you’re going through and can relate to your challenges. But if you’re neurotypical you will likely interpret this as me making the whole thing “about me”; you may assume I’m choosing to decenter you to cater to some narcissistic tendency I have to make everything center on me.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-GSVe7k1yZz" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Further: a lot of us seem to have an issue where we “absorb” the emotions of the people around us. If you are feeling angry and you engage with me I will start feeling angry. If you are sad I will start feeling sad. If you are joyful I will start feeling joy. It is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">hilarious</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to me that this is considered a “lack” of empathy.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-8ltjz_zhxj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Finally, hyperempathy can be exhausting and excruciating. When you can’t walk past the TV news without an emotional breakdown you eventually learn to start tuning out those things that don’t directly impact you. As a result you may start to appear “uncaring” when the actuality is that you’re protecting yourself from the very real problem of caring too much.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-_1IesK6Ih7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Do you see how this is a fundamental misunderstanding? Autistic people express different things — including empathy!! — in Autistic ways. Because of this, and because the non-Autistic people responsible for documenting and writing about us don’t understand it, we’ve been accused of lacking empathy. Countless undiagnosed hyper-empathic Autistic people think “I have way too much empathy to be Autistic!” and that’s 100% because of how Autistic empathy is talked about.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-3EPJoi4ps7" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Autistic Expression</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-E5VQnP_zHr" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">When writing about Autistic people be open to the idea that you are misunderstanding their empathy because they aren’t expressing it in the way you would. Pay attention to how much effort the Autistic people you’re speaking to, for instance, put into making sure you understand them. They are doing SO MUCH emotional labor for you, translating their subjective realities into expressions they hope will allow you to understand them. Autistic communication is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">rooted </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">in empathy, because </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"></p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-zSCtpmEEDV" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Experts Are Frequently Wrong</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-nl5lPdmMWc" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This should set off a few red flags for you. Anyone you’re interviewing that tells you that Autistic people don’t feel empathy, for instance, simply doesn’t know what they’re talking about. But entire academic subfields have spun up around misunderstandings of what Autism is and what Autistic people experience, and these subfields are all run by non-Autistic individuals doing their best to interpret without asking questions. It’s </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">common</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> to discover that everyone from Steven “Autistic People are somewhere between robots and chimpanzees” Pinker to Simon “Autism is an Extreme Male Brain” Baron-Cohen is actually completely full of shit when they talk about this stuff. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-36uGNvIf2D" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Autism and Intersectionality</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-P6t5ZUL0La" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">Autism as a neurotype </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> but is </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">There are Autistic people of every race, though diagnosis often privileges white people. There are Autistic people of every gender, and in fact Autistic people are far more likely to be trans or otherwise gender nonconforming than non-Autistic people. There are Autistic people of every sexual orientation, every class, every nationality and every religion.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-i_rJA912pR" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of these categories are social constructs. That does not mean that they’re not real — hell, Hydrogen is a social construct — but it does mean that the way we relate to these concepts may be different than you expect.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-WqxGXxVyFk" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">What that means is that it’s important to understand the concept of </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> as developed by Black Feminists over the past few decades</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Intersectionality is the acknowledgement that different axes of oppression compound, confound and inform each other in ways that give rise to emergent complexity and unique expression of identity. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">A Black man and a Black woman are going to have very different experiences, and when you include things like sexuality and disability into the mix it turns out that sussing out identity gets pretty complicated.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OMqYuhclad" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">All of this holds when we add Autism. To be Autistic and Male is to be similar in some ways and different in other ways than someone who is Neurotypical and Male: even our very basic experience of very basic categories is complicated and informed by our neurodiversity. Don’t even get me started on </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">how </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">this</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> — </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">white people get called “Autistic” and Black people are often diagnosed with “Oppositional Defiant Disorder”, for instance, </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-rPjQZ-eOTH" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">Key Takeaway: Seek Out Autistic People of Color</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-OmvKnLSV7F" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Actively seek out and amplify </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">multiply-marginalized Autistic voices like </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> If your journalism talks to five Autistic adults you’re way ahead of the curve, but if they’re all white then you’re falling behind in another way that’s just as important. We </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">all</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> need to be heard and recognized as fully human. Bonus points if you ask about how many undiagnosed Autistic people of color are currently sitting in American prison cells.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-0aR1lhsM0l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Neuroqueerness</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-X0lk0KNNHE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nick Walker argues persuasively that to be neurodivergent is in some sense to be queer. She frames this using the word “Neuroqueer” and defines what she means in </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. Some Autistic people go farther, and claim that because of the way Autism intersects with things like Gender and Sexuality that to be Autistic is intrinsically to be queer; this site hosts an essay making that very case, here: </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-58fNeYBw6l" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: Diagnostic Privilege</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-hfsXYQUyrw" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">The diagnostic criteria for Autism were</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">. The further you are from that category the </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">, even by well-intentioned professionals. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">This is one reason why </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">; nobody is making this up, but not everyone will be believed.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h3 tpmoHiys S7mvk5xn wp1IF9SI" data-editable-id="cl-nA66T9X-PL" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Key Takeaway: We Are Everywhere</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZhLB2YwDCE" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Every community, every demographic, has Autistic members. Remember that we exist everywhere, and we’re reading what you’re writing. It’s easy to think of us as “other”, as a separate category distinct from whatever group you’re writing about; instead, how does your writing change if you recognize that there are Autistic people present in the demographic you’re covering?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-h2 z628VJht S7mvk5xn wp1IF9SI" data-editable-id="cl-HGsgByMl-X" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">Nothing About Us Without Us</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-nfEYEXxn5n" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If you’ve read this far thank you very much. I hope I’ve provided enough information here to at least complicate your sense of what Autism is, and to help you understand the ways in which reductive coverage of Autistic people does more harm than good. We are a complex invisible diaspora of extremes, and anything you say about one of us will be false for another.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5TGOQOn78y" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">If there’s one key takeaway I want you to have from this article it’s this: that our community’s slogan, “Nothing About Us Without Us”, is not only a concise summary of our policy positions but a commitment to self-determination with or without the help of the people around us. </p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-lL0UT4Wzhf" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">And here’s where that gets complicated, because as you read this whole essay you were getting one relatively privileged Autistic person’s perspective on Autism. I’m a mostly-cis mostly-straight white dude with a high paying tech job and a lot of resources to spend on healing, recovering and processing my own mental health. But I can’t </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">possibly</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> speak for all Autistic people, and if you’ve been reading along you’ll understand why.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-yJFKiFJphk" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-red-light-bg" data-editable-id="TODO: Need an id?">The fact is that there exist Autistic people who would disagree with any given claim I made in this article.</p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> They exist, and </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?">while I obviously disagree with them it is a </p><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">core value of ours</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-green-light-bg" data-editable-id="TODO: Need an id?"> that they be acknowledged and included in the conversation so that they can represent themselves.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-9pexBTmkro" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This only works when we stop trying to find the One Right Way to think and talk about Autism and instead accept that it’s a complex multifaceted dynamic system that can sustain many interpretations, and that a part of supporting the Autistic people around you is supporting those that you disagree with, too. And that’s complex and takes a long time to sit with.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-TuWCv3cp8K" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">We need allies in this fight, and one easy way to be an ally is to center Autistic people in your reporting when that’s relevant.</p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> We aren’t objects of pity, we aren’t challenges sent from heaven to test our parents, we aren’t serial killers waiting to break. We are mostly patient, tired, misunderstood and struggling.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-ZUm9QkRwh_" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This document was originally created on December 19, 2021. It lives in a constant state of revision, so there’s no real “final” draft. If you like it, please check out my other </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> on this site. I also have a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> section with links to useful things for Neurodivergent people, and a </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?"> list for tracking your favorite Neurodivergent twitter accounts.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-C-5r5TXPsJ" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">More importantly, though! Here are some links to Autistic-run Autism organizations. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-blue-light-bg" data-editable-id="TODO: Need an id?">If and when you write about Autism in major media, if and when you express opinions about Autism in a medical or professional context, if and when you teach about Autism, please make sure that your perspective is informed by fact-checking with these people.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5TdmEqxmxj" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b" data-editable-id="TODO: Need an id?">This is not optional, this is the right thing to do.</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-j6Y1Jxjnhb" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">I want to draw your attention to something, here. I’m giving you a list of organizations to look at for resources about Autism and there are some conspicuous absences. You’ve probably never heard of Neuroclastic, but you’re probably wondering why Autism Speaks isn’t on this list, or NEXT for Autism, or Autistica — those you’ve probably heard about, right?</p></div> | |||
| <div data-next-line="OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0" class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-NtTwhJWK_7" data-kr-drop-target="true"><p data-next-span="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic kr-green-light-bg" data-editable-id="TODO: Need an id?">I hope, after reading this essay, you can understand the frustration of the Autistic community at the very idea that the loudest voice in most discussions of Autism at the policy, communication and research level is a group of non-Autistic people who called themselves, of all things, “Autism Speaks”. </p><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">Not only is their entire framing of Autism pathologizing and negative but they promote a form of behavioral control of Autistic children called “ABA”. Many Autistic adults have said that going through ABA gave them PTSD, and it’s worth exploring why ABA is so well-established and highly promoted — but that’s beyond the scope of this document.</p></div> | |||
| <div class="kr-line-set-width H5IwV_uC OyPlFagl W8I3dhr7 jDL47qdc kr-line kr-paragraph kr-indented fIftOrkU block-level-0 S7mvk5xn wp1IF9SI" data-editable-id="cl-5i6l7gQgQl" data-kr-drop-target="true"><p class="kr-span OyPlFagl _raUlkcz W8I3dhr7 t2Chds3b kr-italic" data-editable-id="TODO: Need an id?">If you’re familiar with the Autistic community you may also notice that ASAN is not listed. ASAN has done outstanding work, but pending further community engagement around accountability and transparency I can’t currently recommend them at the expense of other orgs. They’re currently expanding their leadership to include more people of color and are working on addressing some major critical feedback they’ve received. Once addressed I’ll reconsider adding them to this list - but in the interest of inclusivity, if you are just discovering this space you should know that ASAN exists and is a leader in the Autistic community.</p></div> | |||
| </div> | |||
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| <h1>Writing for Engineers</h1> | |||
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| <p>Writing is key to have impact in large organizations. As a senior software | |||
| engineer chances are that writing is the most important skill you have to | |||
| acquire in order to increase your scope beyond the team and advance your career.</p> | |||
| <p>Writing is hard. Many Software engineers struggle with writing. Personally I | |||
| never had an intrinsic interest in literature, so writing did not naturally come | |||
| to me either. I have spent days and weeks agonizing and procrastinating around | |||
| larger writing tasks. And to this day, having pressure to produce high-quality | |||
| documents on a deadline gives me nightmares.</p> | |||
| <p>This article contains some learnings that have helped me (and others) to become | |||
| better and more productive as a writer over the past 15 years. I am sharing them | |||
| in the hope, that you find them useful. However, don’t think that I am always | |||
| able to follow this advice myself 😅. I still have a lot to learn.</p> | |||
| <h2 id="before-you-begin">Before you begin</h2> | |||
| <h3 id="have-something-to-say">Have something to say</h3> | |||
| <p>This statement seems obvious, but turns out to be a problem surprisingly often. | |||
| <strong>The goal of writing is to deliver a message to an audience in an effective | |||
| way.</strong> If you don’t have a good message, you will struggle to write something | |||
| useful.</p> | |||
| <blockquote> | |||
| <p>During my time at University, I was tasked multiple times with writing long | |||
| reporting documents for EU projects. This was terrible experience, because the | |||
| main goal was to look good and fill pages. Generally, I had a good idea of the | |||
| domain, but did not have a clear message or sufficient depth. For me, this made | |||
| it incredibly hard to write anything. Thinking about this now, I think | |||
| <a href="https://en.wikipedia.org/wiki/GPT-3">GPT-3</a> would be amazing at writing EU | |||
| Project reports.</p> | |||
| </blockquote> | |||
| <blockquote> | |||
| <p>One of my most successful <a href="https://www.circonus.com/2018/08/latency-slos-done-right/">blog | |||
| posts</a> (that led to a | |||
| <a href="https://archive.fosdem.org/2019/schedule/event/latency_slos_done_right/">series</a> | |||
| <a href="https://www.usenix.org/conference/srecon19asia/presentation/schlossnagle-latency">of</a> | |||
| <a href="https://www.usenix.org/conference/srecon19americas/presentation/moyer">talks</a> | |||
| on the topic) was written over the course of 3 hours in a hotel room, and | |||
| published the next day. It was a followup to a discussion that I had on that | |||
| same day with a few Google SREs at SRECon EMEA 2018. I knew what I wanted to | |||
| say. I knew who I wanted to reach. That made writing the post super easy.</p> | |||
| </blockquote> | |||
| <p>If you don’t have a clear message in your head, your are not ready to start | |||
| writing a narrative yet. You have other things to do first: Research the topic | |||
| and find your message. It’s important to realize that these are different tasks. | |||
| They may involve writing in the form of note-taking or journaling, but this is | |||
| not material you would directly use in the final document.</p> | |||
| <h3 id="dont-confuse-writing-and-learning">Don’t confuse writing and learning</h3> | |||
| <p>The realization that you don’t have the complete message in your head, will | |||
| often only become apparent while writing. This surfaces as inability to find a | |||
| good punch-line or to express yourself clearly. In fact, writing is a great test | |||
| to see if you have a good understanding of a topic, and have a firm grasp on the | |||
| vocabulary of the domain. There is a saying that:</p> | |||
| <blockquote> | |||
| <p>Writing is god’s way to show you how imperfect your thoughts are.</p> | |||
| </blockquote> | |||
| <p>And similarly:</p> | |||
| <blockquote> | |||
| <p>An argument is only half as good once you are uttering it.</p> | |||
| </blockquote> | |||
| <p>If you run into this problem, it means that you are learning things. Writing is | |||
| generally a great way to learn, but one has to realize that you are doing it. | |||
| Learning is a slow process and requires patience. It is not helped much by | |||
| agonizing in front of a screen, trying to squeeze out another sentence. Doing | |||
| more research on the topic by reading a book, blog or paper and taking notes may | |||
| be a better time investment.</p> | |||
| <h3 id="know-your-audience">Know your audience</h3> | |||
| <p>The better you know and understand your audience the easier it will be to reach | |||
| the goal of delivering a message to them. The intended audience of the text | |||
| influences the terminology you can use, the context you can assume and the | |||
| writing style (casual/formal).</p> | |||
| <p>When writing an article, I generally <strong>visualize a concrete person as | |||
| representative of the audience</strong>, that I am directing this text towards. This | |||
| will usually also be the first person, that will get a draft to read. It’s | |||
| generally much easier to tell a story “to someone” as opposed to talking into | |||
| the void.</p> | |||
| <blockquote> | |||
| <p>Most of my <a href="/#math">#math</a> posts on this blog are actually lacking a good | |||
| audience. They are only readable for people who are proficient in abstract | |||
| mathematics, but they are only interesting for people working in software. The | |||
| intersection of both groups is tiny. Hence I don’t expect a lot of resonance or | |||
| impact with those. They are documenting things that I wanted to learn myself.</p> | |||
| </blockquote> | |||
| <h3 id="respect-your-state-of-mind">Respect your state-of-mind</h3> | |||
| <p>Writing requires intense focus over long periods of time. Ideally you want to | |||
| get into a flow state where you are zoned in and working on the text for hours | |||
| on-end. This is by far the most efficient way to write a narrative or a | |||
| blog-post – at least for me.</p> | |||
| <p><strong>Prepare for a writing task, like you would for a hike. You are in for a grind.</strong> | |||
| Find a comfortable space to sit. Grab a beverage/snack of your preference. Most | |||
| importantly make sure that you are rested and able to focus. Don’t start a | |||
| writing task when you are already tired. There is no way you will get anything | |||
| useful written.</p> | |||
| <p>Also, avoid distractions as much as you can. Most importantly: Mute the Chat. | |||
| Block at least 3h in your calendar for a writing session. If I am writing longer | |||
| documents for work, I will try to block a full afternoon. For me, the most | |||
| effective writing sessions happen on weekends or vacations where I don’t have | |||
| any meetings at all.</p> | |||
| <h3 id="work-the-iron-while-its-hot">Work the iron while it’s hot</h3> | |||
| <p>Just like programming, writing requires a lot of context that you hold in your | |||
| short term memory. You need to recall a lot of details about the topic you are | |||
| writing about, as well as your punch-line and the current state of the document. | |||
| All this state takes time to load into memory, and is easily lost by | |||
| distractions or context switching.</p> | |||
| <p>If you have loaded a lot of useful context in your brain at any given point in | |||
| time, use this context to do something useful with it. Try to milk that moment, | |||
| and make space when you realize you are in a position to write effectively on | |||
| your topic.</p> | |||
| <h3 id="heat-the-iron-before-working-it">Heat the iron before working it</h3> | |||
| <p>Conversely, if you don’t have the context in your brain right now, you have | |||
| two options (1) don’t write or (2) start loading the context into your brain.</p> | |||
| <p>Missing context is a frequent source of agony and procrastination. Don’t expect | |||
| to take a TODO like “Write conference talk” from your list, and start working on | |||
| it right way. You need to invest time into loading context before you have a | |||
| chance to write even a single sentence.</p> | |||
| <p>Good ways to load some context are:</p> | |||
| <ol> | |||
| <li>Go through your notes that you took about the topic.</li> | |||
| <li>Discuss the topic with a coworker / random stranger / family member.</li> | |||
| <li>Read some books / blogs / papers on the topic.</li> | |||
| </ol> | |||
| <p>Bad ways to load the context are surfing HackerNews or YouTube.</p> | |||
| <h2 id="while-writing">While writing</h2> | |||
| <h3 id="start-at-the-top-not-the-beginning">Start at the Top not the Beginning</h3> | |||
| <p>This is by far the most common and damaging mistake I see people make. They | |||
| start with writing at the beginning of the narrative:</p> | |||
| <blockquote> | |||
| <p>“Once upon a time, in a galaxy far, far away …”</p> | |||
| </blockquote> | |||
| <p>Do you really think that those were the first words that George Lucas brought | |||
| to paper, when writing the original Star Wars trilogy?</p> | |||
| <p>For documents that are more than a page long you must take a top-down approach | |||
| and start with an <strong>outline</strong>. An outline is a list of sections together with | |||
| rough notes, often in the form of bullet points. For this document the <a href="https://github.com/HeinrichHartmann/HeinrichHartmann.github.io/commit/46be4c95faeda16996baf6799eca8a551b282565">first | |||
| outline</a> looked something like this:</p> | |||
| <pre tabindex="0"><code># How to Write? | |||
| - Audience: Senior+ SWE | |||
| - Goal: Upskill and unblock writing | |||
| ## Have something to say | |||
| - Goal: Deliver message to audience. | |||
| - Without message writing is agony: Squeezing a water from a stone. | |||
| ## Know your audience | |||
| ## Work the iron while it's hot | |||
| - Be aware of your brain context | |||
| - Start/Stay on task, if you have the right context | |||
| - Load context before you start | |||
| ## Separate Editing, Publishing and Writing | |||
| - If you are fiddling with git/emacs before starting to write, | |||
| you are doing something wrong. | |||
| ... | |||
| </code></pre> | |||
| <p>Note that, the section titles are not just generic scaffolding (e.g. | |||
| “Introduction” / “Body” / “Conclusion”) but already tell the whole story.</p> | |||
| <h3 id="fix-the-story-line-before-fleshing-things-out">Fix the story-line before fleshing things out</h3> | |||
| <p>When building a house, you finish the brick-work before applying the paint. When | |||
| writing, you want to arrive at a good story-line for you document, before you | |||
| start fleshing out and polishing the text. A outline should be the | |||
| first milestone for any larger document you are writing. The outline, should | |||
| convey the main message and provide a clear “red thread” that guides your reader | |||
| through your argument.</p> | |||
| <blockquote> | |||
| <p>When working for <a href="https://www.mckinsey.com/">a consulting firm</a>, I saw my | |||
| senior colleagues spending a lot of time polishing and iterating the structure | |||
| of their slide decks before working on the details. They would print the deck on | |||
| paper, pin the slides to a wall, and keep re-arranging them until they were | |||
| happy with the story-line. The slides would remain on the wall and subject to | |||
| re-arrangement until the deck was finalized.</p> | |||
| </blockquote> | |||
| <p>Fixing the story-line of a document becomes MUCH more expensive once you have | |||
| already fleshed out the paragraphs. In some cases, the best thing you can do | |||
| is to stash away the whole content and go back to an outline before building | |||
| the document up again.</p> | |||
| <h3 id="finish-the-content-before-starting-to-polish">Finish the content before starting to polish</h3> | |||
| <p>A trap I have found myself in way too many times, is to get distracted by | |||
| adjacent tasks that are not needed to produce the narrative. Those tasks | |||
| include:</p> | |||
| <ol> | |||
| <li><strong>Editing</strong>. Fixing spelling, wording or restructuring paragraphs.</li> | |||
| <li><strong>Publishing</strong>. Fiddling with formatting, tuning WordPress, automating your | |||
| git+hugo+heroku deployments.</li> | |||
| <li><strong>Producing Figures</strong>. Sketching figures on paper or browsing the web for | |||
| images that you can use in your presentation.</li> | |||
| </ol> | |||
| <p>Remember: <strong>The first milestone for your document is an outline. Everything that | |||
| is not directly contributing to this goal is a distraction.</strong></p> | |||
| <p>When you are happy with the outline, <strong>the second milestone is a fully fleshed | |||
| out text, where all notes have been converted to paragraphs.</strong> The text should | |||
| cover the intended content but does not need to be polished or well written.</p> | |||
| <p>Once you are at this point, you start worrying about polish: Remove typos, | |||
| improve wording, restructure paragraphs. Also work on figures and publishing can | |||
| be delayed to this point without any problems.</p> | |||
| <h3 id="make-your-text-skimable">Make your text skimable</h3> | |||
| <p>According to <a href="https://www.towermarketing.net/blog/winning-the-fight-against-a-website-users-attention-span/">someone on the | |||
| internet</a>:</p> | |||
| <blockquote> | |||
| <p>Eight seconds. A website user’s attention span lies somewhere around eight seconds.</p> | |||
| </blockquote> | |||
| <p>In these eight seconds, your document has to reveal enough value to the user, | |||
| that he/she is willing to invest more time into actually reading the document.</p> | |||
| <p>If you want your voice to be heard (and also improve the | |||
| <a href="https://www.amazon.com/Dont-Make-Think-Revisited-Usability/dp/0321965515/ref=pd_sbs_sccl_1/142-5208579-0665727?pd_rd_w=IgY9h&pf_rd_p=3676f086-9496-4fd7-8490-77cf7f43f846&pf_rd_r=CGY8ZQY3T7ESSFA4W7RD&pd_rd_r=a1baa3bd-3e30-402a-afe2-9d01086d2fc5&pd_rd_wg=eMOQZ&pd_rd_i=0321965515&psc=1">usability</a> | |||
| of your text) you have to design your document for “skim-ability”. You do this | |||
| by providing anchor points that allow the user to gauge the content without | |||
| actually reading it. You want the outline and key arguments to keep standing out | |||
| in the final version of the document.</p> | |||
| <p>Section Headings and Lists are the key anchor points you want to use to reach | |||
| this goal. Also Figures, Quotes and Highlights are features that stand out and | |||
| grab attention while skimming.</p> | |||
| <blockquote> | |||
| <p>If you are writing a slide-deck, a good approach to ensure skim-ability is the | |||
| use of Action Titles. Action Titles are slide titles that summarize the content | |||
| of a slide in a complete sentence. By doing this you allow the reader to get the | |||
| gist of your document by just reading the titles. This highly annoying guy on | |||
| the internet does a fine job of explaining the concept | |||
| <a href="https://youtu.be/rSk11YqnXoc?t=131">here</a> and ideas around it.</p> | |||
| </blockquote> | |||
| <h3 id="provide-summary-sections">Provide Summary Sections</h3> | |||
| <p>Summary sections are commonly found in document templates and academic writing. | |||
| They are usability features, that provide a high-level overview about the | |||
| content for readers in a hurry. Expect that a large fraction of your audience | |||
| will only read a summary.</p> | |||
| <ul> | |||
| <li> | |||
| <p><strong>Abstract</strong> / <strong>Executive Summary</strong> / <strong>TL;DR</strong>. This section summarizes the | |||
| content of the document, deliberately duplicating information. It’s generally | |||
| the first section of your document, and is intended for reader that has not | |||
| yet read the document. A good abstract describes context, motivates the | |||
| problem summarizes the findings but also leaves some suspension to motivate | |||
| further reading.</p> | |||
| </li> | |||
| <li> | |||
| <p><strong>Conclusion.</strong> This section also summarizes the content and is hence similar | |||
| to an abstract. The difference is that it is the last section in your | |||
| document, focuses on the outcomes and is deliberately referencing back to the | |||
| content. The basic idea is that the reader had read the document before he/she | |||
| arrives there, but this is in practice almost never the case.</p> | |||
| </li> | |||
| </ul> | |||
| <p>It’s important to note that these summary sections are independent of the main | |||
| story line, and are hence an artifact that can be prepared independently. | |||
| Generally, I would recommend to start working on summary sections (like | |||
| Abstract/Conclusion) last, since only then will you be certain what your | |||
| document actually covers.</p> | |||
| <h2 id="the-practice-of-writing">The Practice of Writing</h2> | |||
| <h3 id="keep-writing">Keep Writing</h3> | |||
| <p>The only way to improve your writing is by writing. As with practice in general, | |||
| valuing quantity over quality is generally a good idea. Developing a writing | |||
| muscle, and writing relatively short medium quality documents every week will | |||
| make you a much better writer than crafting highly polished documents once a | |||
| year.</p> | |||
| <blockquote> | |||
| <p>My English teacher in school used to say: “Writing. Only writing brings | |||
| blessing.” I did not think much about this slogan, but it was catchy enough to | |||
| stick with me. Now I consider it a deep truth, and keep it at the top of my | |||
| blog, as a reminder.</p> | |||
| </blockquote> | |||
| <h3 id="leverage-small-writing-tasks-as-exercise">Leverage small writing tasks as exercise</h3> | |||
| <p>Most of the rules that apply to writing long-form documents like Tech | |||
| Narratives, Blog Posts or Papers hold up for writing short documents like | |||
| E-Mails or issue tickets. Use this documents to practice your writing skills, by | |||
| make them well structured, usable and polished.</p> | |||
| <h3 id="get-early-feedback-on-your-outline">Get early feedback on your outline</h3> | |||
| <p>Once you have constructed an outline and polished the story-line you are at a | |||
| great place to get initial feedback on your document. This allows you to uncover | |||
| flaws in your story-line early, and make sure you are on-target with the | |||
| content. Also, reading an outline is a very quick thing to do, so it will not | |||
| take a lot of effort for your reviewer to go through your text.</p> | |||
| <p>This is most important for long documents, that you are producing on request of | |||
| a stakeholder (manager).</p> | |||
| <h3 id="circulate-drafts-of-the-text-to-the-selected-audience">Circulate drafts of the text to the selected audience</h3> | |||
| <p>Once you fleshed out the content, and did a first editing pass removing the most | |||
| glaring grammar and spelling mistakes, you are at a good point to sent the | |||
| document to a few selected members of the target audience.</p> | |||
| <p>This practice has three benefits:</p> | |||
| <ol> | |||
| <li>You will get a pair of fresh eyes on the text that will at the very least | |||
| catch a few grammar quirks that remained in the text.</li> | |||
| <li>You take a break from working on the text yourself, until you received the | |||
| feedback, allowing yourself to take a fresh look at your writing.</li> | |||
| <li>You have an excuse to reach out to old friends that you had neglected for far | |||
| too long.</li> | |||
| </ol> | |||
| <p>Hint: Don’t forget to thank your reviewers in an “Acknowledgements” section.</p> | |||
| <h1 id="acknowledgements">Acknowledgements</h1> | |||
| <p>Thanks to my sister, Johanna Hartmann, and <a href="https://twitter.com/andrewhowdencom">Andrew | |||
| Howden</a> for feedback on earlier versions of | |||
| this document.</p> | |||
| </article> | |||
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| title: Writing for Engineers | |||
| url: https://www.heinrichhartmann.com/posts/writing/ | |||
| hash_url: 26b53a6e8889416c87357fd76cc5d951 | |||
| <p>Writing is key to have impact in large organizations. As a senior software | |||
| engineer chances are that writing is the most important skill you have to | |||
| acquire in order to increase your scope beyond the team and advance your career.</p> | |||
| <p>Writing is hard. Many Software engineers struggle with writing. Personally I | |||
| never had an intrinsic interest in literature, so writing did not naturally come | |||
| to me either. I have spent days and weeks agonizing and procrastinating around | |||
| larger writing tasks. And to this day, having pressure to produce high-quality | |||
| documents on a deadline gives me nightmares.</p> | |||
| <p>This article contains some learnings that have helped me (and others) to become | |||
| better and more productive as a writer over the past 15 years. I am sharing them | |||
| in the hope, that you find them useful. However, don’t think that I am always | |||
| able to follow this advice myself 😅. I still have a lot to learn.</p> | |||
| <h2 id="before-you-begin">Before you begin</h2> | |||
| <h3 id="have-something-to-say">Have something to say</h3> | |||
| <p>This statement seems obvious, but turns out to be a problem surprisingly often. | |||
| <strong>The goal of writing is to deliver a message to an audience in an effective | |||
| way.</strong> If you don’t have a good message, you will struggle to write something | |||
| useful.</p> | |||
| <blockquote> | |||
| <p>During my time at University, I was tasked multiple times with writing long | |||
| reporting documents for EU projects. This was terrible experience, because the | |||
| main goal was to look good and fill pages. Generally, I had a good idea of the | |||
| domain, but did not have a clear message or sufficient depth. For me, this made | |||
| it incredibly hard to write anything. Thinking about this now, I think | |||
| <a href="https://en.wikipedia.org/wiki/GPT-3">GPT-3</a> would be amazing at writing EU | |||
| Project reports.</p> | |||
| </blockquote> | |||
| <blockquote> | |||
| <p>One of my most successful <a href="https://www.circonus.com/2018/08/latency-slos-done-right/">blog | |||
| posts</a> (that led to a | |||
| <a href="https://archive.fosdem.org/2019/schedule/event/latency_slos_done_right/">series</a> | |||
| <a href="https://www.usenix.org/conference/srecon19asia/presentation/schlossnagle-latency">of</a> | |||
| <a href="https://www.usenix.org/conference/srecon19americas/presentation/moyer">talks</a> | |||
| on the topic) was written over the course of 3 hours in a hotel room, and | |||
| published the next day. It was a followup to a discussion that I had on that | |||
| same day with a few Google SREs at SRECon EMEA 2018. I knew what I wanted to | |||
| say. I knew who I wanted to reach. That made writing the post super easy.</p> | |||
| </blockquote> | |||
| <p>If you don’t have a clear message in your head, your are not ready to start | |||
| writing a narrative yet. You have other things to do first: Research the topic | |||
| and find your message. It’s important to realize that these are different tasks. | |||
| They may involve writing in the form of note-taking or journaling, but this is | |||
| not material you would directly use in the final document.</p> | |||
| <h3 id="dont-confuse-writing-and-learning">Don’t confuse writing and learning</h3> | |||
| <p>The realization that you don’t have the complete message in your head, will | |||
| often only become apparent while writing. This surfaces as inability to find a | |||
| good punch-line or to express yourself clearly. In fact, writing is a great test | |||
| to see if you have a good understanding of a topic, and have a firm grasp on the | |||
| vocabulary of the domain. There is a saying that:</p> | |||
| <blockquote> | |||
| <p>Writing is god’s way to show you how imperfect your thoughts are.</p> | |||
| </blockquote> | |||
| <p>And similarly:</p> | |||
| <blockquote> | |||
| <p>An argument is only half as good once you are uttering it.</p> | |||
| </blockquote> | |||
| <p>If you run into this problem, it means that you are learning things. Writing is | |||
| generally a great way to learn, but one has to realize that you are doing it. | |||
| Learning is a slow process and requires patience. It is not helped much by | |||
| agonizing in front of a screen, trying to squeeze out another sentence. Doing | |||
| more research on the topic by reading a book, blog or paper and taking notes may | |||
| be a better time investment.</p> | |||
| <h3 id="know-your-audience">Know your audience</h3> | |||
| <p>The better you know and understand your audience the easier it will be to reach | |||
| the goal of delivering a message to them. The intended audience of the text | |||
| influences the terminology you can use, the context you can assume and the | |||
| writing style (casual/formal).</p> | |||
| <p>When writing an article, I generally <strong>visualize a concrete person as | |||
| representative of the audience</strong>, that I am directing this text towards. This | |||
| will usually also be the first person, that will get a draft to read. It’s | |||
| generally much easier to tell a story “to someone” as opposed to talking into | |||
| the void.</p> | |||
| <blockquote> | |||
| <p>Most of my <a href="/#math">#math</a> posts on this blog are actually lacking a good | |||
| audience. They are only readable for people who are proficient in abstract | |||
| mathematics, but they are only interesting for people working in software. The | |||
| intersection of both groups is tiny. Hence I don’t expect a lot of resonance or | |||
| impact with those. They are documenting things that I wanted to learn myself.</p> | |||
| </blockquote> | |||
| <h3 id="respect-your-state-of-mind">Respect your state-of-mind</h3> | |||
| <p>Writing requires intense focus over long periods of time. Ideally you want to | |||
| get into a flow state where you are zoned in and working on the text for hours | |||
| on-end. This is by far the most efficient way to write a narrative or a | |||
| blog-post – at least for me.</p> | |||
| <p><strong>Prepare for a writing task, like you would for a hike. You are in for a grind.</strong> | |||
| Find a comfortable space to sit. Grab a beverage/snack of your preference. Most | |||
| importantly make sure that you are rested and able to focus. Don’t start a | |||
| writing task when you are already tired. There is no way you will get anything | |||
| useful written.</p> | |||
| <p>Also, avoid distractions as much as you can. Most importantly: Mute the Chat. | |||
| Block at least 3h in your calendar for a writing session. If I am writing longer | |||
| documents for work, I will try to block a full afternoon. For me, the most | |||
| effective writing sessions happen on weekends or vacations where I don’t have | |||
| any meetings at all.</p> | |||
| <h3 id="work-the-iron-while-its-hot">Work the iron while it’s hot</h3> | |||
| <p>Just like programming, writing requires a lot of context that you hold in your | |||
| short term memory. You need to recall a lot of details about the topic you are | |||
| writing about, as well as your punch-line and the current state of the document. | |||
| All this state takes time to load into memory, and is easily lost by | |||
| distractions or context switching.</p> | |||
| <p>If you have loaded a lot of useful context in your brain at any given point in | |||
| time, use this context to do something useful with it. Try to milk that moment, | |||
| and make space when you realize you are in a position to write effectively on | |||
| your topic.</p> | |||
| <h3 id="heat-the-iron-before-working-it">Heat the iron before working it</h3> | |||
| <p>Conversely, if you don’t have the context in your brain right now, you have | |||
| two options (1) don’t write or (2) start loading the context into your brain.</p> | |||
| <p>Missing context is a frequent source of agony and procrastination. Don’t expect | |||
| to take a TODO like “Write conference talk” from your list, and start working on | |||
| it right way. You need to invest time into loading context before you have a | |||
| chance to write even a single sentence.</p> | |||
| <p>Good ways to load some context are:</p> | |||
| <ol> | |||
| <li>Go through your notes that you took about the topic.</li> | |||
| <li>Discuss the topic with a coworker / random stranger / family member.</li> | |||
| <li>Read some books / blogs / papers on the topic.</li> | |||
| </ol> | |||
| <p>Bad ways to load the context are surfing HackerNews or YouTube.</p> | |||
| <h2 id="while-writing">While writing</h2> | |||
| <h3 id="start-at-the-top-not-the-beginning">Start at the Top not the Beginning</h3> | |||
| <p>This is by far the most common and damaging mistake I see people make. They | |||
| start with writing at the beginning of the narrative:</p> | |||
| <blockquote> | |||
| <p>“Once upon a time, in a galaxy far, far away …”</p> | |||
| </blockquote> | |||
| <p>Do you really think that those were the first words that George Lucas brought | |||
| to paper, when writing the original Star Wars trilogy?</p> | |||
| <p>For documents that are more than a page long you must take a top-down approach | |||
| and start with an <strong>outline</strong>. An outline is a list of sections together with | |||
| rough notes, often in the form of bullet points. For this document the <a href="https://github.com/HeinrichHartmann/HeinrichHartmann.github.io/commit/46be4c95faeda16996baf6799eca8a551b282565">first | |||
| outline</a> looked something like this:</p> | |||
| <pre tabindex="0"><code># How to Write? | |||
| - Audience: Senior+ SWE | |||
| - Goal: Upskill and unblock writing | |||
| ## Have something to say | |||
| - Goal: Deliver message to audience. | |||
| - Without message writing is agony: Squeezing a water from a stone. | |||
| ## Know your audience | |||
| ## Work the iron while it's hot | |||
| - Be aware of your brain context | |||
| - Start/Stay on task, if you have the right context | |||
| - Load context before you start | |||
| ## Separate Editing, Publishing and Writing | |||
| - If you are fiddling with git/emacs before starting to write, | |||
| you are doing something wrong. | |||
| ... | |||
| </code></pre><p>Note that, the section titles are not just generic scaffolding (e.g. | |||
| “Introduction” / “Body” / “Conclusion”) but already tell the whole story.</p> | |||
| <h3 id="fix-the-story-line-before-fleshing-things-out">Fix the story-line before fleshing things out</h3> | |||
| <p>When building a house, you finish the brick-work before applying the paint. When | |||
| writing, you want to arrive at a good story-line for you document, before you | |||
| start fleshing out and polishing the text. A outline should be the | |||
| first milestone for any larger document you are writing. The outline, should | |||
| convey the main message and provide a clear “red thread” that guides your reader | |||
| through your argument.</p> | |||
| <blockquote> | |||
| <p>When working for <a href="https://www.mckinsey.com/">a consulting firm</a>, I saw my | |||
| senior colleagues spending a lot of time polishing and iterating the structure | |||
| of their slide decks before working on the details. They would print the deck on | |||
| paper, pin the slides to a wall, and keep re-arranging them until they were | |||
| happy with the story-line. The slides would remain on the wall and subject to | |||
| re-arrangement until the deck was finalized.</p> | |||
| </blockquote> | |||
| <p>Fixing the story-line of a document becomes MUCH more expensive once you have | |||
| already fleshed out the paragraphs. In some cases, the best thing you can do | |||
| is to stash away the whole content and go back to an outline before building | |||
| the document up again.</p> | |||
| <h3 id="finish-the-content-before-starting-to-polish">Finish the content before starting to polish</h3> | |||
| <p>A trap I have found myself in way too many times, is to get distracted by | |||
| adjacent tasks that are not needed to produce the narrative. Those tasks | |||
| include:</p> | |||
| <ol> | |||
| <li><strong>Editing</strong>. Fixing spelling, wording or restructuring paragraphs.</li> | |||
| <li><strong>Publishing</strong>. Fiddling with formatting, tuning WordPress, automating your | |||
| git+hugo+heroku deployments.</li> | |||
| <li><strong>Producing Figures</strong>. Sketching figures on paper or browsing the web for | |||
| images that you can use in your presentation.</li> | |||
| </ol> | |||
| <p>Remember: <strong>The first milestone for your document is an outline. Everything that | |||
| is not directly contributing to this goal is a distraction.</strong></p> | |||
| <p>When you are happy with the outline, <strong>the second milestone is a fully fleshed | |||
| out text, where all notes have been converted to paragraphs.</strong> The text should | |||
| cover the intended content but does not need to be polished or well written.</p> | |||
| <p>Once you are at this point, you start worrying about polish: Remove typos, | |||
| improve wording, restructure paragraphs. Also work on figures and publishing can | |||
| be delayed to this point without any problems.</p> | |||
| <h3 id="make-your-text-skimable">Make your text skimable</h3> | |||
| <p>According to <a href="https://www.towermarketing.net/blog/winning-the-fight-against-a-website-users-attention-span/">someone on the | |||
| internet</a>:</p> | |||
| <blockquote> | |||
| <p>Eight seconds. A website user’s attention span lies somewhere around eight seconds.</p> | |||
| </blockquote> | |||
| <p>In these eight seconds, your document has to reveal enough value to the user, | |||
| that he/she is willing to invest more time into actually reading the document.</p> | |||
| <p>If you want your voice to be heard (and also improve the | |||
| <a href="https://www.amazon.com/Dont-Make-Think-Revisited-Usability/dp/0321965515/ref=pd_sbs_sccl_1/142-5208579-0665727?pd_rd_w=IgY9h&pf_rd_p=3676f086-9496-4fd7-8490-77cf7f43f846&pf_rd_r=CGY8ZQY3T7ESSFA4W7RD&pd_rd_r=a1baa3bd-3e30-402a-afe2-9d01086d2fc5&pd_rd_wg=eMOQZ&pd_rd_i=0321965515&psc=1">usability</a> | |||
| of your text) you have to design your document for “skim-ability”. You do this | |||
| by providing anchor points that allow the user to gauge the content without | |||
| actually reading it. You want the outline and key arguments to keep standing out | |||
| in the final version of the document.</p> | |||
| <p>Section Headings and Lists are the key anchor points you want to use to reach | |||
| this goal. Also Figures, Quotes and Highlights are features that stand out and | |||
| grab attention while skimming.</p> | |||
| <blockquote> | |||
| <p>If you are writing a slide-deck, a good approach to ensure skim-ability is the | |||
| use of Action Titles. Action Titles are slide titles that summarize the content | |||
| of a slide in a complete sentence. By doing this you allow the reader to get the | |||
| gist of your document by just reading the titles. This highly annoying guy on | |||
| the internet does a fine job of explaining the concept | |||
| <a href="https://youtu.be/rSk11YqnXoc?t=131">here</a> and ideas around it.</p> | |||
| </blockquote> | |||
| <h3 id="provide-summary-sections">Provide Summary Sections</h3> | |||
| <p>Summary sections are commonly found in document templates and academic writing. | |||
| They are usability features, that provide a high-level overview about the | |||
| content for readers in a hurry. Expect that a large fraction of your audience | |||
| will only read a summary.</p> | |||
| <ul> | |||
| <li> | |||
| <p><strong>Abstract</strong> / <strong>Executive Summary</strong> / <strong>TL;DR</strong>. This section summarizes the | |||
| content of the document, deliberately duplicating information. It’s generally | |||
| the first section of your document, and is intended for reader that has not | |||
| yet read the document. A good abstract describes context, motivates the | |||
| problem summarizes the findings but also leaves some suspension to motivate | |||
| further reading.</p> | |||
| </li> | |||
| <li> | |||
| <p><strong>Conclusion.</strong> This section also summarizes the content and is hence similar | |||
| to an abstract. The difference is that it is the last section in your | |||
| document, focuses on the outcomes and is deliberately referencing back to the | |||
| content. The basic idea is that the reader had read the document before he/she | |||
| arrives there, but this is in practice almost never the case.</p> | |||
| </li> | |||
| </ul> | |||
| <p>It’s important to note that these summary sections are independent of the main | |||
| story line, and are hence an artifact that can be prepared independently. | |||
| Generally, I would recommend to start working on summary sections (like | |||
| Abstract/Conclusion) last, since only then will you be certain what your | |||
| document actually covers.</p> | |||
| <h2 id="the-practice-of-writing">The Practice of Writing</h2> | |||
| <h3 id="keep-writing">Keep Writing</h3> | |||
| <p>The only way to improve your writing is by writing. As with practice in general, | |||
| valuing quantity over quality is generally a good idea. Developing a writing | |||
| muscle, and writing relatively short medium quality documents every week will | |||
| make you a much better writer than crafting highly polished documents once a | |||
| year.</p> | |||
| <blockquote> | |||
| <p>My English teacher in school used to say: “Writing. Only writing brings | |||
| blessing.” I did not think much about this slogan, but it was catchy enough to | |||
| stick with me. Now I consider it a deep truth, and keep it at the top of my | |||
| blog, as a reminder.</p> | |||
| </blockquote> | |||
| <h3 id="leverage-small-writing-tasks-as-exercise">Leverage small writing tasks as exercise</h3> | |||
| <p>Most of the rules that apply to writing long-form documents like Tech | |||
| Narratives, Blog Posts or Papers hold up for writing short documents like | |||
| E-Mails or issue tickets. Use this documents to practice your writing skills, by | |||
| make them well structured, usable and polished.</p> | |||
| <h3 id="get-early-feedback-on-your-outline">Get early feedback on your outline</h3> | |||
| <p>Once you have constructed an outline and polished the story-line you are at a | |||
| great place to get initial feedback on your document. This allows you to uncover | |||
| flaws in your story-line early, and make sure you are on-target with the | |||
| content. Also, reading an outline is a very quick thing to do, so it will not | |||
| take a lot of effort for your reviewer to go through your text.</p> | |||
| <p>This is most important for long documents, that you are producing on request of | |||
| a stakeholder (manager).</p> | |||
| <h3 id="circulate-drafts-of-the-text-to-the-selected-audience">Circulate drafts of the text to the selected audience</h3> | |||
| <p>Once you fleshed out the content, and did a first editing pass removing the most | |||
| glaring grammar and spelling mistakes, you are at a good point to sent the | |||
| document to a few selected members of the target audience.</p> | |||
| <p>This practice has three benefits:</p> | |||
| <ol> | |||
| <li>You will get a pair of fresh eyes on the text that will at the very least | |||
| catch a few grammar quirks that remained in the text.</li> | |||
| <li>You take a break from working on the text yourself, until you received the | |||
| feedback, allowing yourself to take a fresh look at your writing.</li> | |||
| <li>You have an excuse to reach out to old friends that you had neglected for far | |||
| too long.</li> | |||
| </ol> | |||
| <p>Hint: Don’t forget to thank your reviewers in an “Acknowledgements” section.</p> | |||
| <h1 id="acknowledgements">Acknowledgements</h1> | |||
| <p>Thanks to my sister, Johanna Hartmann, and <a href="https://twitter.com/andrewhowdencom">Andrew | |||
| Howden</a> for feedback on earlier versions of | |||
| this document.</p> | |||
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| <blockquote class="wp-block-quote"><p>En matière de climat, par exemple, on sait de manière générale que l’empreinte carbone des Français a très peu évolué au cours des vingt dernières années : elle stagne entre 11 et 12 tonnes de CO2e/hab/an, […]. Cette stagnation s’explique en partie par des <a href="https://youmatter.world/fr/definition/effet-rebond-ecologie-definition-principe-exemples-solutions/" data-type="URL" data-id="https://youmatter.world/fr/definition/effet-rebond-ecologie-definition-principe-exemples-solutions/" target="_blank" rel="noreferrer noopener">effets rebonds</a> au sein de leur consommation, c’est-à-dire que la baisse de certains postes de consommation est compensée par d’autres facteurs en hausse : par exemple, le contenu en CO2 des carburants et la consommation moyenne de carburant des véhicules baissent, mais les distances parcourues augmentent ; ou alors la <strong>performance des logements s’améliore mais la surface par personne s’agrandit</strong> […]</p><cite><a rel="noreferrer noopener" href="https://www.millenaire3.com/dossiers/Modes-de-vie-soutenables/Des-actes-a-la-hauteur" target="_blank">Des actes à la hauteur ? Face au défi climatique, perceptions et limites des comportements</a></cite></blockquote> | |||
| <p>Quand on parle de maison écologique, j’ai le sentiment qu’on s’attarde beaucoup sur « comment elle est faite ». Par exemple, est entendu qu’une maison en paille serait écologiquement plus soutenable qu’une maison en parpaings. Cependant, dans ce que je vois se construire comme maisons écologiques, et quand je lis la revue « la Maison écologique », je constate que se sont majoritairement de très grandes maisons… mais en paille… Or, je pense qu’on peut être un très <strong>bon écolo</strong> (dans le sens « réduire son impact sur cette terre ») <strong>dans une maison en parpaings de 30m2</strong> et un <strong>très mauvais dans une maison en paille de 130m2</strong> (en considérant la moyenne de <a rel="noreferrer noopener" href="https://www.insee.fr/fr/statistiques/4277630?sommaire=4318291" data-type="URL" data-id="https://www.insee.fr/fr/statistiques/4277630?sommaire=4318291" target="_blank">2,2 personnes par foyer</a>). La taille ça compte !!! Une petite maison, c’est :</p> | |||
| <ul><li>Moins cher à l’achat, donc moins besoin d’argent, donc moins besoin de travail pour gagner cette argent (le travail est-il bon pour la planète ? Je vais pas partir là-dessus, hein…)</li><li>Moins d’utilisation de matériaux, de déplacements… Même s’ils sont issus du ré-emploi, du recyclage, même s’ils sont issus de l’agriculture (la paille), même s’ils sont renouvelables (le bois) ; moins on en utilise et plus on préserve notre environnement, on en laisse pour les autres… on partage le gâteau…</li><li>Moins d’énergie pour son fonctionnement / sa durée de vie : Le chauffage, eau chaude (perte dans les réseaux), ventilation mécanique… (coût financier, environnemental moindre)</li><li>Moins d’entretien, (idem coût financier / environnemental)</li><li>Moins d’emprise, d’artificialisation des sols et donc plus de place pour le vivant</li><li>Pas de place pour accumuler / capitaliser des objets / vêtements…</li></ul> | |||
| <p>Dans mes <a rel="noreferrer noopener" href="https://david.mercereau.info/motclef/stage/" target="_blank">petites formations sur l’autonomie électrique</a> solaire, je n’encourage personne à aller vers l’autonomie, je dis juste comment le faire… Parce qu’à mon avis, et encore une fois : on peut être un très bon écolo sur le réseau, en consommant peu, et un très mauvais sur un système solaire autonome. C’est avant tout une histoire de besoin / confort / sens…</p> | |||
| <h2><span id="Caution_ecologique">Caution écologique</span></h2> | |||
| <p>J’ai le sentiment que construire en matériaux renouvelables ou issus du réemploi – comme acheter de l’électricité verte / faire installer des panneaux solaires – c’est comme « s’acheter une conscience écologiste ». Pour moi, ce n’est pas la source de l’énergie mais la quantité qui est à questionner.</p> | |||
| <p>Même considération pour les maisons… Vivre dans une maison en paille n’est-il pas devenu une caution écologique en soi ? J’ai le sentiment de le percevoir dans le comportement des nouvelles personnes avec qui je discute quand je dis que je me suis fabriqué ma maison en paille : j’ai l’impression qu’ils me hissent directement sur le podium des champions de l’écologie.</p> | |||
| <h2><span id="Auto-contrainte_chemin_vers_la_sobriete">Auto-contrainte, chemin vers la sobriété</span></h2> | |||
| <p>L<strong>‘auto-contrainte</strong> est, je pense, une bonne piste pour aller vers plus de sobriété-liberté. Exemple de l’eau : si tu dois aller chercher l’eau au puits (une contrainte), tu vas forcément consommer moins d’eau que si tu n’as qu’à ouvrir le robinet. Mon foyer consomme aujourd’hui ~18L d’eau / j / personne (la moyenne française est plutôt à <a href="https://fr.wikipedia.org/wiki/Consommation_domestique_en_eau">150L / j / personne</a>). On en est là parce qu’à notre emménagement dans la yourte, nous avons fait le choix de <a rel="noreferrer noopener" href="https://david.mercereau.info/evierlavabo-sans-eau-courante-ni-electricite/" target="_blank">ne pas mettre l’eau courante au robinet</a> (auto-contrainte), mais à la porte. De ce fait, notre rapport à cette ressource a considérablement changé. Après 3 ans de bonnes habitudes, nous avons installé l’eau au robinet de vaisselle (mais toujours <a rel="noreferrer noopener" href="https://david.mercereau.info/fabrication-dune-douche-sans-eau-courante-dans-la-yourte/" target="_blank">pas dans la douche</a>) et notre consommation d’eau n’a pas augmenté… C’est la même chose pour l’électricité, actuellement mon système solaire autonome ne me permet pas de croissance des besoins (sauf à tout changer…). Je suis contraint par ce système (contrainte choisie, heureuse) : c’est pour moi la seul façon d’avancer dans<strong> ce monde d’abondance apparente..</strong>. Cela me permet de toucher du doigt la finitude des choses.</p> | |||
| <p>Si j’applique ce principe d’<strong>auto-contrainte à l’habitat </strong>c’est avant tout sur la <strong>surface</strong> et <strong>non sur la composition des murs </strong>que ça se joue.</p> | |||
| <p>Une étude sur le mode de vie en Tiny House (de <a href="https://www.researchgate.net/profile/Maria-Saxton">Maria Saxton</a>) (<a rel="noreferrer noopener lightbox-video-0" href="https://www.youtube.com/watch?v=3htdloJ0Phk" target="_blank">les pingouins l’on vulgarisé</a>) montre que le principal atout environnemental de ce mode de vie n’est pas son aspect mobile (ça, au contraire, ça semble avoir un impact négatif sur l’environnement car de plus gros véhicules sont achetés pour tracter les tiny, et finalement utilisés aussi pour les trajets quotidiens). Mais le fait que ce soit de petits habitats est bon pour la planète car il n’y a pas de quoi stocker des « objets » de consommations / vêtements et compagnie… Bref, pas de place pour accumuler, et ça c’est bon pour l’environnement.</p> | |||
| <h2><span id="Lrsquoessentiel_15m2">L’essentiel : 15m2 ?</span></h2> | |||
| <blockquote class="wp-block-quote"><p>Quelque soit la taille de votre maison, vous finissez par passer l’essentiel de votre temps au lit, sur votre bureau, dans votre cuisine. Soit dans un espace d’environ 15m2</p><cite><a href="https://youtu.be/fymPIoz8MtE?t=170" target="_blank" rel="noreferrer noopener">source</a></cite></blockquote> | |||
| <p>Et ça ne me semble pas déconnant. En rédigeant cet article, si je regarde autour de moi dans <a rel="noreferrer noopener" href="https://david.mercereau.info/paillourte/" target="_blank">ma maison de 40 m2</a>, l’écrasante majorité du temps est passé dans mon lit, dans le canapé, autour de la table de la cuisine, devant mon bureau… Donc ~1/3 de ma maison… Soit ~15m2…</p> | |||
| <h2><span id="Mais8230">Mais…</span></h2> | |||
| <p>La vie peut changer, on peut avoir besoin de plus grand. Et oui, dans ce cas là, au moment ou ça se présente, si ça se présente, il faudra envisager d’agrandir. Mais dire je fais 4 chambres parce que je projette d’avoir 3 enfants, ça me paraît excessif en point de départ. Rien ne dit qu’on va les faire, rien ne dit qu’on sera encore de ce monde, rien ne dit qu’ils voudront chacun leur chambre… Et s’endetter sur 25 ans pour des hypothèses, je trouve ça périlleux. <strong>C’est plus facile d’agrandir une maison que de la réduire</strong>. D’ailleurs, pas sûr que ça se fasse « réduire une maison ». On cherche plutôt à trouver un nouvel usage pour tel ou tel espace. Quand on en a, on se crée des besoins…</p> | |||
| <p><strong>C’est compliqué de sauter dans le vide</strong>, vers l’inconnu, sortir de sa zone de confort, si on n’a jamais vécu dans du « petit ». Sur ce point, c’est pas faux, mais que vous ayez vécu à Paris ou que vous ayez été étudiant, il y a fort à parier que vous ayez déjà vécu dans petit. Je pense que l’homme a une formidable capacité d’adaptation. De mon côté, j’ai choisi de passer par une yourte (chantier d’1 mois, pas grand investissement financier) pour goûter à cette vie, voir si ça m’allait… j’y suis encore…</p> | |||
| <p><strong>Et si on n’a pas à chauffer parce qu’on a fait une maison passive, ça change la donne ?</strong> J’ai cherché à savoir si le surcoût environnemental d’une maison passive était positif par rapport au fait d’avoir la même maison bien faite avec un besoin de petite puissance de chauffage et je n’ai pas trouvé… Mais il sera toujours plus pertinent, à mon avis, de chauffer peu un petit espace plutôt que d’avoir une grande maison passive.</p> | |||
| <p>Tout ça est à considérer pour l’espace « habitable » (en terme énergétique mais aussi d’impact écologique à la construction) donc d’avoir des espaces de stockage non chauffés (non isolés) c’est une autre histoire, bien moins problématique…</p> | |||
| <h2><span id="Trsquoas_les_moyens_pour_une_grande_maison">T’as les moyens pour une grande maison ?</span></h2> | |||
| <p>La question pour résumer c’est : est-ce que tu as les moyens de te payer le confort souhaité ? (moyen financier / écologique)</p> | |||
| <ul><li>Pour moi, les moyens financiers, c’est 0 prêt. J’attends d’avoir les sous pour les dépenser sinon c’est « vivre au dessus de mes moyens » (c’est là-dessus que notre société repose…), et ça évite bien des spéculations de se passer des banques…</li><li>Pour moi les moyens écologiques, c’est considérer que la terre c’est un gâteau et que c’est pas mal de partager… Actuellement, il y a des gros gourmands (je m’y inclus) qui mangent plus que d’autres… (matériaux, énergie, espace, emprise sur le vivant…).</li></ul> | |||
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| <h1>Shame. - Dirty Feed</h1> | |||
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| <p>I’ve written many times in the past about how I think people should keep their website archives online. In fact I’ve talked about it to the point of obnoxiousness, and then far beyond that. About how old stuff can suddenly become <a href="http://www.dirtyfeed.org/2018/11/buried/">found and loved</a>, about <a href="http://www.dirtyfeed.org/2016/11/ghosts-of-internet-past/">the history of the web disappearing</a>, about <a href="http://www.dirtyfeed.org/2017/02/what-you-leave-behind/">what remains of the public record</a>, about <a href="http://www.dirtyfeed.org/2016/04/the-fragility-of-the-web/">accidentally destroying a web community</a>, about <a href="http://www.dirtyfeed.org/2017/04/the-layer-tennis-archives/">losing memories</a>… or simply about <a href="http://www.dirtyfeed.org/2016/11/life-death/">letting things live</a>.</p> | |||
| <p>It’s all true. But today I want to talk about another reason I feel so strongly about this. A reason I haven’t really touched on before, but I think is one of the most important of all.</p> | |||
| <p>Take a look at <a href="https://thegreatdiscontent.com/interview/frank-chimero/">this interview</a> from 2013, with designer Frank Chimero. It’s actually worth reading in full; it touches on many interesting topics. For instance, I highly identify with this:</p> | |||
| <blockquote><p>“I think I’m similar to a lot of other creative people in that I’m deeply uncomfortable with attention. It’s one of those things where if you gain any attention, you start to subconsciously — or maybe even consciously — make creative choices to have people stop paying attention to you. <em>[…]</em><sup id="rf1-19153"><a href="#fn1-19153" title="All the quotations in this article are edited a little to avoid the back-and-forth with the interviewers, which works brilliantly in the piece itself, but less well when quoting from it. I hope I’ve been fair with my edits, but it’s worth reading the full interview to capture the true flavour of the conversation." rel="footnote">1</a></sup></p> | |||
| <p>Attention creates expectations that feel like a saddle. And most horses buck the first time a saddle is put on them. It is a natural inclination. Maybe it’s immature behavior to want to shake off other people’s expectations? I don’t know. But, if I’m really honest about where I am creatively, that’s what I want to do — I just want to buck.”</p></blockquote> | |||
| <p>This reminds me very much of when I decided I didn’t want to write about sitcoms for a while, because somebody mildly hinted that was all they enjoyed about my writing. It also reminds me that whenever this place gets attention for something beyond my usual audience – my <a href="http://www.dirtyfeed.org/2021/04/what-the-papers-say/"><cite>Yes Minister</cite> piece</a> last year, for instance – I feel a disconcerting mix of pleasure and uncomfortableness. Is my lack of a <em>really</em> popular article on Dirty Feed so far this year down to luck, people having less time for my nonsense as the world opens up again… or <em>my choice?</em></p> | |||
| <p>But there’s another part of this interview which I can’t quite get on board with.</p> | |||
| <p><span id="more-19153"></span></p> | |||
| <blockquote><p>“Any creative person I know feels a bit of shame about his or her past work. That’s the genius of John Baldessari <a href="https://en.wikipedia.org/wiki/John_Baldessari#Disowning_of_early_work">burning all of his work</a> halfway through his career as a work of art — it’s a disavowal and an honest assessment of the creative practice. So what about shame? This is something I think about as a writer. When is it okay for me to delete something I’ve written, something I don’t like any more? Archives are good, but I don’t need to stand behind all of my work forever. Kafka wanted all of his writing burned when he was on his deathbed and who could blame him? I hate that as a reader, but love it as a writer. Maybe that discontentedness is a form of shame, and maybe that shame is good because it shows you’re growing. Even if you’re not growing, at least it implies that you’re changing. <em>[…]</em></p> | |||
| <p>I wonder if every creative person hits this moment, when, for some reason, they don’t make the work for a while. Could be family or personal stuff, a giant vacation, a service trip, god forbid an illness, or anything else that separates you from your body of work for a period. They step away from all that work and when they return, they want to pull everything they’ve made back in. Undo the work. Unsay the words. And once you realize you can’t unsay things, even if you’ve deleted the work, there’s a period of wanting to revolt against your old self to clear the slate. I’ve been there a few times.”</p></blockquote> | |||
| <p>Recently, author Robin Sloan <a href="https://newpublic.substack.com/p/-robin-sloan-describing-the-emotions?s=r">expressed a similar sentiment</a>:</p> | |||
| <blockquote><p>“…to me, this connects back to homepages. Obviously, no one does this, I recognize this is a very niche endeavor, but the art and craft of maintaining a homepage, with some of your writing and a page that’s about you and whatever else over time, of course always includes addition and deletion, just like a garden — you’re snipping the dead blooms. I do this a lot. I’ll see something really old on my site, and I go, “you know what, I don’t like this anymore,” and I will delete it. </p> | |||
| <p>But that’s care. Both adding things and deleting things. Basically the sense of looking at something and saying, “is this good? Is this right? Can I make it better? What does this need right now?” Those are all expressions of care. And I think both the relentless abandonment of stuff that doesn’t have a billion users by tech companies, and the relentless accretion of garbage on the blockchain, I think they’re both kind of the antithesis, honestly, of care.”</p></blockquote> | |||
| <p>Now, it’s not a <em>surprise</em> that I might disagree with the above. But let me frame my disagreement in a slightly unusual way.</p> | |||
| <p><em>Be fair to your past self.</em></p> | |||
| <p>* * *</p> | |||
| <p>There is an idea that we are all on a constant road to self-improvement and self-enlightenment. I fundamentally believe this is not always the case.</p> | |||
| <p>Mentally, I’m healthier than I’ve ever been; physically, I was far more capable 20 years ago. I’m open to watching more film than I used to be, but probably <em>less</em> open when it comes to different kinds of television. I’m better at not being taken advantage of when it comes to friends than I was when I was 17, but far less good at giving the friends I have <em>now</em> my time. If I’m a better person overall than I used to be, then it’s most certainly not true on a case-by-case basis.</p> | |||
| <p>The same is true of my writing. Do I think I’m a better writer than I used to be? Yes, definitely. I’ve written a lot of my favourite articles in the last three years. But there are certainly things I used to write that I would really struggle to do now. Most obviously, I used to bash out endless news pieces for <cite>Red Dwarf</cite> site <a href="http://www.ganymede.tv/">Ganymede & Titan</a>, which meant I used to be much better at researching things <em>quickly</em> to an acceptable standard.</p> | |||
| <p>That’s far from all. My writing on <cite>Dwarf</cite> used to be more fandom-based; endless silly in-jokes. Do I prefer my writing now, shorn of that? Yes, but if you’re a part of that fandom, there’s a whole vaguely amusing way I wrote which is now gone. Or away from writing entirely: how about the <a href="https://www.ganymede.tv/2019/09/dwarfcast-100-100th-dwarfcast-special/">podcasts</a> I used to be part of? Those were some of the most-loved things I’ve ever done; the audience really responded to them. I do nothing like those now.</p> | |||
| <p>Yes, we gain things as we get older. But we most certainly lose things too.</p> | |||
| <p>But then, I find the language surrounding this odd in the first place. Chimero says that <em>“Archives are good, but I don’t need to stand behind all of my work forever.”</em> But keeping an archive online <em>isn’t</em> standing behind your work. It’s just… keeping an archive online. It’s only standing by your work if you relink to it after 10 years and say <em>“I still believe this, by the way”</em>. Hell, you can easily add a note at the top to specifically state that you <em>don’t</em> stand by the work, if you really want to.</p> | |||
| <p>Similarly for Robin Sloan, he seems to care a great deal about whether he still likes a piece of work he wrote or not. To me, that is entirely irrelevant. You don’t <em>have</em> to like everything in your archive. Because archives are a <em>kaleidoscope of your life</em>. They aren’t just a reflection of how you are now. They are you now, a year ago, five years ago, ten years ago. They are how you were, are, and perhaps a hint of what you may become. That’s the sheer joy and magic of them. To snip and prune misses the whole point.</p> | |||
| <p>Because your past self? They might have had a point, you know. If we agree that we aren’t on a never-ending path to improvement, then you could very easily have been right about something then, and wrong now. There are most certainly topics that I’ve gone a full 360° on over the years. Deleting your old thoughts may be giving your older self a kick they really don’t deserve. And the beauty of having an archive is that you don’t <em>need</em> to decide whether you were right or not. Your views, with a date attached, can stand as a reflection of a specific moment in time.</p> | |||
| <p>Reconciling every past view you’ve ever had with how you feel now isn’t <em>required</em>. It sounds exhausting, frankly.</p> | |||
| <p>* * *</p> | |||
| <p>Both Frank Chimero and Robin Sloan followed through with their thoughts on this. Earlier this year, Chimero deleted nearly all of <a href="https://frankchimero.com/blog/">his site’s blog posts</a>; clearly his concerns expressed in the interview lingered:</p> | |||
| <div class="twoimages"> | |||
| <div class="twoimages-1"><img src="http://dirtyfeed.org/wordpress/wp-content/uploads/2022/04/chim1.png" alt="Frank Chimero's site, with many blog posts"> | |||
| <p class="caption"><strong>frankchimero.com, 2021</strong></p> | |||
| </div> | |||
| <div class="twoimages-2"><img src="http://dirtyfeed.org/wordpress/wp-content/uploads/2022/04/chim2.png" alt="Frank Chimero's site, with just five posts"> | |||
| <p class="caption"><strong>frankchimero.com, 2022</strong></p> | |||
| </div> | |||
| </div> | |||
| <p>There used to be over 100 posts on the site; now there are merely five.</p> | |||
| <p>Meanwhile, Robin Sloan has an even sharper solution, and <a href="https://web.archive.org/web/*/www.robinsloan.com">blocks his site</a> from the Wayback Machine entirely, meaning we really <em>can’t</em> view his older, deleted work:</p> | |||
| <p><img data-attachment-id="19266" data-permalink="http://www.dirtyfeed.org/2022/04/shame/sloan/" data-orig-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" data-orig-size="1680,658" data-comments-opened="1" data-image-meta='{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"0"}' data-image-title="sloan" data-image-description="" data-image-caption="" data-medium-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-480x188.png" data-large-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" loading="lazy" src="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" alt="Screengrab of robinsloan.com on the Wayback Machine - This URL has been excluded" class="alignnone size-full wp-image-19266" srcset="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png 1680w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-480x188.png 480w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-768x301.png 768w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-1536x602.png 1536w" sizes="(max-width: 1680px) 100vw, 1680px"></p> | |||
| <p>Whenever I discuss this topic, I always have people ask me: <em>“What are you saying? That people shouldn’t be allowed to delete their old stuff? Surely they have the right to do with it what they like?”</em> And the answer is: of course they do. They absolutely have the right.</p> | |||
| <p>I just ask people to consider: there are many different audiences for your work. The actual author is just one of them. You might not <em>like</em> what your old self has to say any more… but it could be exactly what somebody else needed to read right at that very moment. It could inspire somebody to make something truly great. Everything links together, and who knows where the internet’s complex web of ideas might end up?</p> | |||
| <p>If other people’s creative work happens because they stand on the shoulders of others, then kicking away your work just because you don’t like it any more is a fundamentally selfish act. And I find that a little more worthy of shame than most people’s old blog posts.</p> | |||
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| title: Shame. - Dirty Feed | |||
| url: http://www.dirtyfeed.org/2022/04/shame/ | |||
| hash_url: 9094f894455bccf9d9772fd5782ec782 | |||
| <p>I’ve written many times in the past about how I think people should keep their website archives online. In fact I’ve talked about it to the point of obnoxiousness, and then far beyond that. About how old stuff can suddenly become <a href="http://www.dirtyfeed.org/2018/11/buried/">found and loved</a>, about <a href="http://www.dirtyfeed.org/2016/11/ghosts-of-internet-past/">the history of the web disappearing</a>, about <a href="http://www.dirtyfeed.org/2017/02/what-you-leave-behind/">what remains of the public record</a>, about <a href="http://www.dirtyfeed.org/2016/04/the-fragility-of-the-web/">accidentally destroying a web community</a>, about <a href="http://www.dirtyfeed.org/2017/04/the-layer-tennis-archives/">losing memories</a>… or simply about <a href="http://www.dirtyfeed.org/2016/11/life-death/">letting things live</a>.</p> | |||
| <p>It’s all true. But today I want to talk about another reason I feel so strongly about this. A reason I haven’t really touched on before, but I think is one of the most important of all.</p> | |||
| <p>Take a look at <a href="https://thegreatdiscontent.com/interview/frank-chimero/">this interview</a> from 2013, with designer Frank Chimero. It’s actually worth reading in full; it touches on many interesting topics. For instance, I highly identify with this:</p> | |||
| <blockquote><p>“I think I’m similar to a lot of other creative people in that I’m deeply uncomfortable with attention. It’s one of those things where if you gain any attention, you start to subconsciously — or maybe even consciously — make creative choices to have people stop paying attention to you. <em>[…]</em><sup id="rf1-19153"><a href="#fn1-19153" title="All the quotations in this article are edited a little to avoid the back-and-forth with the interviewers, which works brilliantly in the piece itself, but less well when quoting from it. I hope I’ve been fair with my edits, but it’s worth reading the full interview to capture the true flavour of the conversation." rel="footnote">1</a></sup></p> | |||
| <p>Attention creates expectations that feel like a saddle. And most horses buck the first time a saddle is put on them. It is a natural inclination. Maybe it’s immature behavior to want to shake off other people’s expectations? I don’t know. But, if I’m really honest about where I am creatively, that’s what I want to do — I just want to buck.”</p></blockquote> | |||
| <p>This reminds me very much of when I decided I didn’t want to write about sitcoms for a while, because somebody mildly hinted that was all they enjoyed about my writing. It also reminds me that whenever this place gets attention for something beyond my usual audience – my <a href="http://www.dirtyfeed.org/2021/04/what-the-papers-say/"><cite>Yes Minister</cite> piece</a> last year, for instance – I feel a disconcerting mix of pleasure and uncomfortableness. Is my lack of a <em>really</em> popular article on Dirty Feed so far this year down to luck, people having less time for my nonsense as the world opens up again… or <em>my choice?</em></p> | |||
| <p>But there’s another part of this interview which I can’t quite get on board with.</p> | |||
| <p><span id="more-19153"></span></p> | |||
| <blockquote><p>“Any creative person I know feels a bit of shame about his or her past work. That’s the genius of John Baldessari <a href="https://en.wikipedia.org/wiki/John_Baldessari#Disowning_of_early_work">burning all of his work</a> halfway through his career as a work of art — it’s a disavowal and an honest assessment of the creative practice. So what about shame? This is something I think about as a writer. When is it okay for me to delete something I’ve written, something I don’t like any more? Archives are good, but I don’t need to stand behind all of my work forever. Kafka wanted all of his writing burned when he was on his deathbed and who could blame him? I hate that as a reader, but love it as a writer. Maybe that discontentedness is a form of shame, and maybe that shame is good because it shows you’re growing. Even if you’re not growing, at least it implies that you’re changing. <em>[…]</em></p> | |||
| <p>I wonder if every creative person hits this moment, when, for some reason, they don’t make the work for a while. Could be family or personal stuff, a giant vacation, a service trip, god forbid an illness, or anything else that separates you from your body of work for a period. They step away from all that work and when they return, they want to pull everything they’ve made back in. Undo the work. Unsay the words. And once you realize you can’t unsay things, even if you’ve deleted the work, there’s a period of wanting to revolt against your old self to clear the slate. I’ve been there a few times.”</p></blockquote> | |||
| <p>Recently, author Robin Sloan <a href="https://newpublic.substack.com/p/-robin-sloan-describing-the-emotions?s=r">expressed a similar sentiment</a>:</p> | |||
| <blockquote><p>“…to me, this connects back to homepages. Obviously, no one does this, I recognize this is a very niche endeavor, but the art and craft of maintaining a homepage, with some of your writing and a page that’s about you and whatever else over time, of course always includes addition and deletion, just like a garden — you’re snipping the dead blooms. I do this a lot. I’ll see something really old on my site, and I go, “you know what, I don’t like this anymore,” and I will delete it. </p> | |||
| <p>But that’s care. Both adding things and deleting things. Basically the sense of looking at something and saying, “is this good? Is this right? Can I make it better? What does this need right now?” Those are all expressions of care. And I think both the relentless abandonment of stuff that doesn’t have a billion users by tech companies, and the relentless accretion of garbage on the blockchain, I think they’re both kind of the antithesis, honestly, of care.”</p></blockquote> | |||
| <p>Now, it’s not a <em>surprise</em> that I might disagree with the above. But let me frame my disagreement in a slightly unusual way.</p> | |||
| <p><em>Be fair to your past self.</em></p> | |||
| <p>* * *</p> | |||
| <p>There is an idea that we are all on a constant road to self-improvement and self-enlightenment. I fundamentally believe this is not always the case.</p> | |||
| <p>Mentally, I’m healthier than I’ve ever been; physically, I was far more capable 20 years ago. I’m open to watching more film than I used to be, but probably <em>less</em> open when it comes to different kinds of television. I’m better at not being taken advantage of when it comes to friends than I was when I was 17, but far less good at giving the friends I have <em>now</em> my time. If I’m a better person overall than I used to be, then it’s most certainly not true on a case-by-case basis.</p> | |||
| <p>The same is true of my writing. Do I think I’m a better writer than I used to be? Yes, definitely. I’ve written a lot of my favourite articles in the last three years. But there are certainly things I used to write that I would really struggle to do now. Most obviously, I used to bash out endless news pieces for <cite>Red Dwarf</cite> site <a href="http://www.ganymede.tv/">Ganymede & Titan</a>, which meant I used to be much better at researching things <em>quickly</em> to an acceptable standard.</p> | |||
| <p>That’s far from all. My writing on <cite>Dwarf</cite> used to be more fandom-based; endless silly in-jokes. Do I prefer my writing now, shorn of that? Yes, but if you’re a part of that fandom, there’s a whole vaguely amusing way I wrote which is now gone. Or away from writing entirely: how about the <a href="https://www.ganymede.tv/2019/09/dwarfcast-100-100th-dwarfcast-special/">podcasts</a> I used to be part of? Those were some of the most-loved things I’ve ever done; the audience really responded to them. I do nothing like those now.</p> | |||
| <p>Yes, we gain things as we get older. But we most certainly lose things too.</p> | |||
| <p>But then, I find the language surrounding this odd in the first place. Chimero says that <em>“Archives are good, but I don’t need to stand behind all of my work forever.”</em> But keeping an archive online <em>isn’t</em> standing behind your work. It’s just… keeping an archive online. It’s only standing by your work if you relink to it after 10 years and say <em>“I still believe this, by the way”</em>. Hell, you can easily add a note at the top to specifically state that you <em>don’t</em> stand by the work, if you really want to.</p> | |||
| <p>Similarly for Robin Sloan, he seems to care a great deal about whether he still likes a piece of work he wrote or not. To me, that is entirely irrelevant. You don’t <em>have</em> to like everything in your archive. Because archives are a <em>kaleidoscope of your life</em>. They aren’t just a reflection of how you are now. They are you now, a year ago, five years ago, ten years ago. They are how you were, are, and perhaps a hint of what you may become. That’s the sheer joy and magic of them. To snip and prune misses the whole point.</p> | |||
| <p>Because your past self? They might have had a point, you know. If we agree that we aren’t on a never-ending path to improvement, then you could very easily have been right about something then, and wrong now. There are most certainly topics that I’ve gone a full 360° on over the years. Deleting your old thoughts may be giving your older self a kick they really don’t deserve. And the beauty of having an archive is that you don’t <em>need</em> to decide whether you were right or not. Your views, with a date attached, can stand as a reflection of a specific moment in time.</p> | |||
| <p>Reconciling every past view you’ve ever had with how you feel now isn’t <em>required</em>. It sounds exhausting, frankly.</p> | |||
| <p>* * *</p> | |||
| <p>Both Frank Chimero and Robin Sloan followed through with their thoughts on this. Earlier this year, Chimero deleted nearly all of <a href="https://frankchimero.com/blog/">his site’s blog posts</a>; clearly his concerns expressed in the interview lingered:</p> | |||
| <div class="twoimages"> | |||
| <div class="twoimages-1"><img src="http://dirtyfeed.org/wordpress/wp-content/uploads/2022/04/chim1.png" alt="Frank Chimero's site, with many blog posts"> | |||
| <p class="caption"><strong>frankchimero.com, 2021</strong></p> | |||
| </div> | |||
| <div class="twoimages-2"><img src="http://dirtyfeed.org/wordpress/wp-content/uploads/2022/04/chim2.png" alt="Frank Chimero's site, with just five posts"> | |||
| <p class="caption"><strong>frankchimero.com, 2022</strong></p> | |||
| </div> | |||
| </div> | |||
| <p>There used to be over 100 posts on the site; now there are merely five.</p> | |||
| <p>Meanwhile, Robin Sloan has an even sharper solution, and <a href="https://web.archive.org/web/*/www.robinsloan.com">blocks his site</a> from the Wayback Machine entirely, meaning we really <em>can’t</em> view his older, deleted work:</p> | |||
| <p><img data-attachment-id="19266" data-permalink="http://www.dirtyfeed.org/2022/04/shame/sloan/" data-orig-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" data-orig-size="1680,658" data-comments-opened="1" data-image-meta='{"aperture":"0","credit":"","camera":"","caption":"","created_timestamp":"0","copyright":"","focal_length":"0","iso":"0","shutter_speed":"0","title":"","orientation":"0"}' data-image-title="sloan" data-image-description="" data-image-caption="" data-medium-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-480x188.png" data-large-file="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" loading="lazy" src="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png" alt="Screengrab of robinsloan.com on the Wayback Machine - This URL has been excluded" class="alignnone size-full wp-image-19266" srcset="http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan.png 1680w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-480x188.png 480w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-768x301.png 768w, http://www.dirtyfeed.org/wordpress/wp-content/uploads/2022/04/sloan-1536x602.png 1536w" sizes="(max-width: 1680px) 100vw, 1680px"></p> | |||
| <p>Whenever I discuss this topic, I always have people ask me: <em>“What are you saying? That people shouldn’t be allowed to delete their old stuff? Surely they have the right to do with it what they like?”</em> And the answer is: of course they do. They absolutely have the right.</p> | |||
| <p>I just ask people to consider: there are many different audiences for your work. The actual author is just one of them. You might not <em>like</em> what your old self has to say any more… but it could be exactly what somebody else needed to read right at that very moment. It could inspire somebody to make something truly great. Everything links together, and who knows where the internet’s complex web of ideas might end up?</p> | |||
| <p>If other people’s creative work happens because they stand on the shoulders of others, then kicking away your work just because you don’t like it any more is a fundamentally selfish act. And I find that a little more worthy of shame than most people’s old blog posts.</p> | |||
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| <div class="if ig ih ii ij"><p class=""><h1 id="cb7e" class="pw-post-title ik il im bn in io ip iq ir is it iu iv iw ix iy iz ja jb jc jd je jf jg jh ji gn">My guiding principles after 20 years of programming</h1></p><p id="05b8" class="pw-post-body-paragraph jj jk im jl b jm jn jo jp jq jr js jt ju jv jw jx jy jz ka kb kc kd ke kf kg if gn"><em class="kh">🇨🇳 </em><a class="au ki" href="https://twitter.com/flmn" rel="noopener ugc nofollow" target="_blank"><em class="kh">FLMN</em></a><em class="kh"> kindly translated this to Chinese </em><a class="au ki" href="https://www.jitao.tech/blog/2020/03/my-guiding-principles-after-20-years-of-programming/" rel="noopener ugc nofollow" target="_blank"><em class="kh">here</em></a><em class="kh">.<br>🇪🇸 </em><a class="kj ev ck" href="https://medium.com/u/f23518ec3fae?source=post_page-----a087dc55596c--------------------------------" rel="noopener" target="_blank"><em class="kh">Manuel Conde</em></a><em class="kh"> kindly translated this to Spanish </em><a class="au ki" href="https://mcvendrell.medium.com/mis-principios-maestros-tras-20-a%C3%B1os-de-programaci%C3%B3n-7ea350a1bea4" rel="noopener"><em class="kh">here</em></a><em class="kh">.<br>🇷🇺 apprently it is translated to Russian </em><a class="au ki" href="https://habr.com/ru/company/skillfactory/blog/660097/" rel="noopener ugc nofollow" target="_blank"><em class="kh">here</em></a><em class="kh">.</em></p><p id="2a98" class="pw-post-body-paragraph jj jk im jl b jm jn jo jp jq jr js jt ju jv jw jx jy jz ka kb kc kd ke kf kg if gn">I’ve been programming since 1999 and this year I’ve officially coded for 20+ years. I started with Basic but soon jumped into Pascal and C and then learned object oriented programming (OOP) with Delphi and C++. In 2006 I started with Java and in 2011 I started with JavaScript. I’ve worked with a wide range of businesses from robotics, fin tech, med tech to media and telecom. Sometimes I had a different hat as a researcher, CTO, TPM (technical product manager), teacher, system architect or TL (technical leader) but I’ve always been coding. I’ve worked on some products that served millions of people, and some that failed before being released. I worked as a consultant and I even had my own startup. I have spent lots of time on open source projects, closed source projects and internally open source projects (proprietary code that is developed by a community inside the company). I’ve worked with tiny microcontrollers all the way to mobile and desktop apps to cloud servers and lately serverless.</p></div> | |||
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| title: My guiding principles after 20 years of programming | |||
| url: https://alexewerlof.medium.com/my-guiding-principles-after-20-years-of-programming-a087dc55596c | |||
| hash_url: d55dffd91db7452e76bf32f3dfc6446a | |||
| <div class="if ig ih ii ij"><p class=""><h1 id="cb7e" class="pw-post-title ik il im bn in io ip iq ir is it iu iv iw ix iy iz ja jb jc jd je jf jg jh ji gn">My guiding principles after 20 years of programming</h1></p><p id="05b8" class="pw-post-body-paragraph jj jk im jl b jm jn jo jp jq jr js jt ju jv jw jx jy jz ka kb kc kd ke kf kg if gn"><em class="kh">🇨🇳 </em><a class="au ki" href="https://twitter.com/flmn" rel="noopener ugc nofollow" target="_blank"><em class="kh">FLMN</em></a><em class="kh"> kindly translated this to Chinese </em><a class="au ki" href="https://www.jitao.tech/blog/2020/03/my-guiding-principles-after-20-years-of-programming/" rel="noopener ugc nofollow" target="_blank"><em class="kh">here</em></a><em class="kh">.<br>🇪🇸 </em><a class="kj ev ck" href="https://medium.com/u/f23518ec3fae?source=post_page-----a087dc55596c--------------------------------" rel="noopener" target="_blank"><em class="kh">Manuel Conde</em></a><em class="kh"> kindly translated this to Spanish </em><a class="au ki" href="https://mcvendrell.medium.com/mis-principios-maestros-tras-20-a%C3%B1os-de-programaci%C3%B3n-7ea350a1bea4" rel="noopener"><em class="kh">here</em></a><em class="kh">.<br>🇷🇺 apprently it is translated to Russian </em><a class="au ki" href="https://habr.com/ru/company/skillfactory/blog/660097/" rel="noopener ugc nofollow" target="_blank"><em class="kh">here</em></a><em class="kh">.</em></p><p id="2a98" class="pw-post-body-paragraph jj jk im jl b jm jn jo jp jq jr js jt ju jv jw jx jy jz ka kb kc kd ke kf kg if gn">I’ve been programming since 1999 and this year I’ve officially coded for 20+ years. I started with Basic but soon jumped into Pascal and C and then learned object oriented programming (OOP) with Delphi and C++. In 2006 I started with Java and in 2011 I started with JavaScript. I’ve worked with a wide range of businesses from robotics, fin tech, med tech to media and telecom. Sometimes I had a different hat as a researcher, CTO, TPM (technical product manager), teacher, system architect or TL (technical leader) but I’ve always been coding. I’ve worked on some products that served millions of people, and some that failed before being released. I worked as a consultant and I even had my own startup. I have spent lots of time on open source projects, closed source projects and internally open source projects (proprietary code that is developed by a community inside the company). I’ve worked with tiny microcontrollers all the way to mobile and desktop apps to cloud servers and lately serverless.</p></div> | |||
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| <li><a href="/david/cache/2022/d55dffd91db7452e76bf32f3dfc6446a/" title="Accès à l’article dans le cache local : My guiding principles after 20 years of programming">My guiding principles after 20 years of programming</a> (<a href="https://alexewerlof.medium.com/my-guiding-principles-after-20-years-of-programming-a087dc55596c" title="Accès à l’article original distant : My guiding principles after 20 years of programming">original</a>)</li> | |||
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