Thanks for this. It’s a very effective piece of writing, and I’ve learned a lot.
Bravo! Let’s hope that that Dr. Gupta will read this and take it to heart and engage in dialog with autistic people including the non-speakers among us.
Thank you. I never understood why people seemed annoyed when I tried to express empathy by relating a similar experience to theirs. Now it makes sense!
As for “non-empathetic" nonverbal autistics, I dare anyone to say that after standing near my daughter while we chastise a dog...
honestly one of the best things I’ve ever read about autism, as an autistic person and part of a family filled with neurodiversity.
I learned so much about my autistic self from this.
Best thing I’ve read all year to understand autism. I’ve done a lot of reading and watching and I think this is seminal and must be widely read by all in the media.
This is so brilliant
I’m so glad to have read this, it’s a wonderful and even-handed explanation of so much. Thank you for your work
I am a teacher educator and have friends among the ASD and deaf community who have always preferred IFL, but when I used their preferred terms, my colleagues publicly clobbered me for my insensitivity. To me the PFL language casts neuro-atypicality in a medical model “disease” stance, and as someone who teaches about human variability as by definition NORMAL (hence the “normal distribution”), this seems to pathologize anything outside of the 68% around the mean. Thank you!
Thank you so much for this! As a recently discovered autistic, I have a lot to learn about myself and this community
I teach a course in neurodiversity to undergraduate students at my university and I am always looking for good, informative pieces to share that are written by neurodivergent individuals. I try to practice the preach! I am neurotypical so I absolutely need them to hear the neurodivergent voice...thank you for this great piece.
This. is. Amazing. Thank you.
This is great! I will be using it in my advocacy efforts. If I may make a couple of suggestions: it would be great to start by contrasting the neurodiversity paradigm vs. the medical model (ie. neurotype vs. disorder) a bit more explicitly and also to include discussion about the social vs. medical models of disability. That would make it a one stop primer for me to share with others!
Hi, Neuropeculiar APS is another Autistic-run Autism organizations. We are based in Italy.
So happy to have read this article, and have watery eyes reading the last few disclaimers below the references. Through learning from 1 autistic person’s perspective, I’ve already learned so much, but have a long way to go and will be applying these takeaways in my daily life, even though I’m not a member of the media.
Thanks for this. I have 2 Autistic sons and one speaks, the other doesn’t. It’s hard to explain the variety in ASD to others and it’s often hard for even parents of ASD kids to speak respectfully at times. This is a nice beginning to what I would hope to be a much longer public conversation.
Wow, what an extensive and thoughtful article. A bit long, but well structured. I most certainly have to bookmark it for later reference!
Thanks for taking the time to write this article. I found it eye-opening in a very helpful way.
This is one of the most well thought out and comprehensive Autism article I’ve ever read probably because it’s actually written by an autistic person LOL. Great work I wish I had this when I wasn’t sure if I was autistic I would’ve been like OK this info says yes sksksksks. Just well written good job!!
I appreciate so much about this piece! I wanted to foremost thank you for your powerful and important words. I shared this with all of my colleagues. I also wanted to offer an alternative perspective to your brief comments on applied behavior analysis (ABA). Despite the pervasive quality control issues in the field, as well as a continuing need to evolve in response to the concerns you noted, at the core of the philosophy of ABA is the notion that what society deems as “problem” behavior is actually adaptive for the individual. “Problem behavior” communicates the individual’s (often basic) needs. Your section on motivation reminded me a lot of this philosophy. Over the past four decades, behavior analysts have developed methods to safely understand the motivation behind dangerous problem behaviors, even when a person cannot communicate their needs with verbal language. Behavior analysts use this information to develop individualized programs that teach new skills to both the autistic individual and their caregivers that will help meet the autistic individuals’ needs. Sometimes the focus is more so on changing the caregivers’ behavior (e.g., teaching the caregiver how to support the autistic individual better in school activities or how to modify the activities to make them more enjoyable for the autistic individual) and sometimes the focus is on building outlets of communication for the autistic individual. The primary goal is to improve the autistic individuals’ quality of life and wellbeing. Behavior analysts have also developed methods to understand people’s preferences, even when the person cannot vocally communicate them. Individualized choice and preference are the heartbeat of applied behavior analysis and should be two key components in every behavioral intervention. Again, I recognize that the current state of behavior analytic practice is often not reflective of some of these core philosophies and gold-standard methodologies, but many behavior analysts are working hard to fix that! As one of them, I want to thank you again for sharing your insights and expertise, and for being open to continued conversations like the one you had with Dr. Gupta. I am sure, like Dr. Gupta, I will continue to make mistakes (I likely have made some in this comment, and I welcome everyone’s feedback); I only hope that people in my life are as willing as you are to continue these important conversations and strive for mutual growth!
I really appreciate this article. I’m a 55 year old male and now realize I’m autistic. My wife and I have seemed to be living in different universes for 25 years. The one thing that resonates with me PROFOUNDLY, is the concept of “what is obvious to me is not the same as what is obvious to you.” That’s it. That summarizes the whole shit! Thank you. Done deal.
This is absolutely brilliant, I have learned so much from this!
Thank you from a University professor.
As the aunt of an autistic nephew this is invaluable. I also saw a few pieces of myself here!
I am profoundly appreciative and moved by this essay and will do whatever I can to share it. I work at Evergreen Goodwill, a regional group of retail stores and job training centers in central and north Puget Sound. We do a monthly Equity Media series for Job Training Center Staffand to do a deeper dive into equity issues to become more informed about our students, staff and ourselves. Happily, our March discussion topic is “Disability” and with your permission, I’d like to share this essay. Thank you so much for doing this hard work.
Anon A truly comprehensive piece. As an actually autistic, and as an editor, and as a person who truly loves bad language in everyday use, the only editorial recommendation I’d make is to excise those two blue words in this one. The piece is creditable, and also personable enough without them.
I'm a grandmother of a 12-year-old autistic boy and a 10-year-old autistic and Downs boy in the same family. The older boy is self-harming and sometimes aggressive. I'm concerned these tendencies will worsen as he is beginning puberty. His mom tries to recognize triggers for his behavior. No one knows how to help, and she is continually trying to find a way to deal with their future. The younger child is nonverbal, but fortunately more docile. I appreciate your paper, since it opens my eyes further to understand toe complexities surrounding their situations. No easy answers. Thank you.
Excellent and very insightful article!!!
Thank you - I am a NT parent of an autistic child so this helps a lot in helping me learn how to communicate better with him
Incredible article. Opened my eyes to the “real world” of autism and non-autism relationship. This helps me understand and relate to my granddaughter who was recently diagnosed with ASD better. I totally relate to the perception of being a disabled person and yet I do not see myself as a disabled person. It all makes perfect sense for me.
Thank you for the time and thought behind this important piece you have written. My son is autistic and so much of what you have written rings true. There is such lack of empathy for Autistic persons because Autism is not understood. And the trauma in childhood and adolescence is extreme. My other son’s friends have told him, “Your brother seems fine!” Okay. So much wrong with that. But, my point here is that as a big brother, my older son wanted to explode with trying to express how hard it is for his younger brother to navigate a social situation and how exhausting it is to “seem fine.” As far as extreme empathy— you hit this right on. I have had talks with my son about how that paper he threw away is okay— try not to feel bad that it is thrown away. He is also the only person in his grade out there buying a sympathy card for the kid whose dog died. So, from my view , the hyper empathy is a gift for people as well as something that can cause so much pain. Anyway, I just want to thank you for the time you took to write this. So well stated.
Thank you for sharing your thoughts in this article. It was very meaningful to me. I have an autistic teen son who means the world to me and also work with autistic children as an occupational therapist. I was also taught "person first language" in my graduate program and can now see the complexities of how some may not consider the concept relevant with autism. I have a long time of feeling passionate about advocating and helping others understand neurodiversity and autism. However, I see my limitations in truly understanding the experience from my neurotypical brain. The article was very insightful and gave me a lot to think about as I communicate with my son, and other children and parents and the community. Thank you again
Thank you so much for bring greater clarity and understanding to me. I am passing my learning on to my students. With much gratitude.
Thank you for speaking up and helping us all to be heard.
Thank you so much for this excellent article - and the many links I will be following to read over the next days and weeks!
Such a masterpiece, thank you for writing this 💞