Trigger Warnings: Discussions of the elimination of autism, descriptions of autism as a tragedy
Dear Dr. Shapin,
I am a rookie self-advocating Autistic adult. I was diagnosed in March 2014 at the age of 32 by a psychiatrist during my last year of graduate school at Texas Tech University. I write this because I am curious as to what you were thinking when you were writing your article.
As a professor of History of Sociology and Science at an institution like Harvard, you should hold yourself to better standards (your title doesn’t excuse the language of your article, though). History includes current events as well as historical events. Self-advocacy is becoming more important than ever and you completely missed it. Well, read my story: a genuine one from a genuine Autistic person. Know that I am not a soulless husk in the shape of a human being.
For years, I have struggled (and continue to do so) with understanding why I didn’t fit in with everyone else. People were hostile to me for no reason, I always fell behind in conversations, and I always seemed to be stepping on everyone’s toes (in a figurative manner, so to speak). I’ve botched job interview after job interview. In fact, in my early 20s, an interviewer stopped the interview and showed me the door without explaining what happened with a cold “Thank you for your interest in the job position.” I was confused and hurt. This was during a part of my life where I was rejected in many things. I am still reeling from that era of my life because Autistic people like me absorb hostility and retain it longer; it hurts us deeply.
Like that job interview, your article in the New Yorker was very hurtful and insensitive. You probably have had Autistic students in your classroom without even knowing it. Some of them probably didn’t know, either. Your article is based on outdated views of the autism spectrum and, if taken at face value by the population at large, would reinforce those hurtful views and stereotypes. Those hurtful stereotypes are the reasons why people want to cure and eliminate us.
I became a self-advocate when I read that people are actually trying to find out what causes people like me to exist and that those people WANT TO PREVENT US FROM EXISTING. Whether they be verbal or nonverbal, regardless of skin color and sexual orientation/identity (or lack thereof), Autistic people are here to stay. If you intended to inspire an image in the reader, you most certainly did so, and in the most harmful way possible. We are not shells of human beings with soulless, black mirrors for eyes who cause our parents grief and hardship. The imagery evoked is wrong on so many levels.
Far to the contrary, my eyes have done many things. They have earned me a bachelor’s degree (French) and two master’s degrees (French and Applied Linguistics). I was a doctoral student at Texas Tech for a year, but dropped out because I was becoming increasingly unhappy with how my life was going among other things (but that’s a story for another day). I have been a graduate instructor. I have studied several languages: French, Spanish, Japanese, Portuguese, German, Latin, and Mandarin Chinese. Although the vision problems which are comorbid with my autism have hampered my language learning, I still pursue what I love. I am in the process of mitigating the visual hypersensitivities that hinder me in that respect and the tinted glasses I have recently acquired have been wonderful in doing so.
Like many self-advocates, I am not against treatments that respect the Autistic individual (see my previous blog entry for details). I am against a cure, I am against normalization, and I am against ELIMINATION. Your article’s language pushes these points of view, whether intentional or not. I give you credit for looking at both sides, however, your article did not accurately cover self-advocacy. Anyone can go to any corner of the Internet and see organizations like Autism Speaks saying the exact same things found in your article. That is, the worst-case scenarios found in your article. You added yet another article that describes autism as a tragedy to the mountain of hate.
If you’re writing an article that’s supposed to be middle ground, you should watch what kind of language you use. Most importantly, ASK Autistic people about their self-advocacy. Don’t make it one-sided or lean heavily towards one side (i.e. – the understandably frustrated parents of nonverbal/severely disabled Autistic children). Go beyond the surface!
Inspired by the Autistic author Deborah Lipsky, I view exchanges between people of different neurotypes as a cultural exchange. You have crossed a cultural line and went beyond faux-pas. Understandings between individuals, cultures, etc. cannot be attained without dialogue or explanation, which brings me to ask you a few questions:
1.) How long did you spend researching for this article?
2.) Did you even read Neurotribes? I saw no other mention of it in your article after the only one; only references to In a Different Key.
3.) Did you research self-advocates like Ari Ne’eman, Amy Sequenzia or Lydia Brown (among many other great self-advocates from all walks of life) in the Autistic community? Did you seek their input?
4.) Did you even take time to consider that you would cross a line with the words you used?
Whether or not you answer is up to you. I’m listening. The WHOLE AUTISM COMMUNITY is listening. Also – most importantly – listen to US, as well. ALL OF US.
a.k.a. – The Ad Astra Aspie
P.S. – Here’s some extra reading for you, in case you’re lacking in self-advocacy resources:
Lydia Brown’s Autistic Hoya – http://www.autistichoya.com/p/resources.html
The Autistic Self-Advocacy Network – http://autisticadvocacy.org/
Autism Women’s Network – http://autismwomensnetwork.org/
The Thinking Person’s Guide to Autism – http://www.thinkingautismguide.com