Trigger Warnings: Dehumanization of Autistic people, cure and normalization talk
2ND IMPORTANT NOTICE (1/27/2016): When I first wrote my blog entry, I did not know that Steve Shapin is a PhD at Harvard. When I Googled him, I found that he has quite an extensive history of contributing to The New Yorker. I changed Mr. Shapin to Dr. Shapin to reflect that. I give him his title as part of my brutal honesty as an Autistic and because of that brutal honesty I feel it’s due. I think his article is a product of ignorance.
There’s this thing called Hanlon’s Razor, which goes something like this:
Never attribute to malice that which can be adequately explained by stupidity.
Have a look at where I got it from here: http://rationalwiki.org/wiki/Hanlon’s_Razor
Let me make something clear: My putting the fact that he’s a professor at Harvard is not (and should not be) a reason to direct a bunch of hate against him.
IMPORTANT NOTICE (1/26/2016): Please read my follow-up to this entry – An Open Letter to Dr. Steven Shapin In these entries it is clear that I am being civil to Dr. Shapin. PLEASE DON’T be hateful towards this guy for just one article he wrote (I’m not defending his dehumanizing article).
EDIT NOTICE (1/24/2016): Minor typo corrections and also recognition of the fact that I found out that Steven Shapin is a history professor at Harvard. Therefore I’ve re-edited small parts of the entry to reflect that. Otherwise, my entry remains the same and my point of view still stands: what Dr. Shapin wrote is incredibly insensitive, not well-researched, and not having the input of Autistic people. Take the Tweet below as food for thought.
Main entry text below.
So, I’m making the rounds on social media when I run into this Twitter update from Erin of TheEisforErin:
So, I hop on the search engine express and find this little gem entitled “What is Autism?” by Dr. Steven Shapin of the New Yorker.
You can read the article at your own risk here: http://www.donotlink.com/hxrk
While I think this article tries to cover both sides of the story, it’s somewhat misleading and unintentionally insulting to the majority of the Autistic population.
It’s a rough read in a few places. In a nutshell, it’s just a synopsis of the ever-changing dialog about the autism spectrum, but I take issue with some parts of the article:
1.) There are several parts where Dr. Shapin uses the word “pathology” as if autism were a disease. IT’S NOT A DISEASE! Here’s just one example of this usage:
The establishment of autism as a distinct pathological condition has certainly improved the lot of countless patients and their family members, but, as Donvan and Zucker relate, the road has been far from smooth.
I give Dr. Shapin some credit for viewing both sides of the coin, but here’s another example of this usage:
There are obvious ways in which the history of autism can be seen as progressive: the quality of life for many people receiving a spectrum diagnosis has undoubtedly improved. Yet this same history has come under attack from proponents of so-called medicalization theory. This set of views, loosely linked to the work of Michel Foucault, criticizes the modern tendency to recategorize human behaviors as medical pathologies demanding expert diagnosis and care.
But here’s where I see him dropping the ball and getting something wrong about us Neurodiversity proponents:
Neurodiversity activists confront parents of severely autistic children in exchanges that are as full of pain as they are rich in irony. Activists insist that there should be no more talk of pathology and no more programs for treatment and cure; the parents are outraged that activists who place themselves on the high-functioning end of the spectrum have no real understanding of the serious disabilities afflicting children at the other end, and are undermining the gains in treatment and recognition achieved over so many years.
I am NOT against every form of treatment. There are some very sucky comorbid conditions that come with being on the autism spectrum, but these can be mitigated. For example, I wear tinted glasses to cut down on my visual hypersensitivities. These also help with my sensitivity to fluorescent lights and CFL bulbs. I’d like to talk about my treatments some more, but I feel that I don’t have enough information at the moment.
No, Dr. Shapin, you have it wrong when you say that we’re against all forms of treatment. We are against treatments that seek to extinguish and/or modify our behaviors. This is from the Autistic Self Advocacy Network’s website (found here: http://autisticadvocacy.org/policy-advocacy/position-statements/)
Respectful Use of Therapies
Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.
Going back to the confrontation between self-advocates and frustrated parents of Autistic children, you have no idea what it’s like to be treated like shit all your life by a lot of people, then come to find that you can’t help your behavior because of your neurological makeup. This is my story. Of course parents want the best for their children regardless of neurotype, but when you start standing up for yourself and start speaking out against how WRONG it is for others to want you and their children’s behaviors to fall in line with the rest of society (barring something extreme like self-harm) you get people who oppose you, presenting worst-case scenarios. While extreme disability exists with some cases of autism, it’s not EVERY case.
This leads me to the second thing with which I take issue with the article.
2.) Presenting autism as a worst case scenario and painting every case as something tragic.
Steven Shapin writes the passage that self-advocates are taking issue with:
For parents of autistic kids, awareness is desperately important. It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.
I’m sorry… my eyes are WHAT?
My parents did not know about my autism (EDIT TO ADD, SO THAT THINGS DON’T GET MISUNDERSTOOD: my parents were awesomely tolerant of my behaviors). Hell, I didn’t know about it until about 2 years ago. I was not a worst-case scenario for my parents. I am very verbal, I do not self-harm, although I am somewhat tactually defensive. I also logically know that the world is irregular and can tolerate it to an extent. Quit assuming that you know what’s going on in our heads. It’s okay to ask Autistics about things and challenge what you know, just do it respectfully.
I AM NOT A WORST-CASE SCENARIO.
Also, Dr. Shapin, go and look at pictures of nonverbal Autistics like Amy Sequenzia of Autism Women’s Network. Here’s a link to a page with her eyes NOT being black mirrors.
Here’s another one:
With every tragic portrayal comes a wave of people who want to either cure or eliminate us. This leads me to the third thing about the article that irks me to no end.
3.) Cure and normalization talk.
Immediately after that “black mirrors” passage, the reader gets hit with this wonderful line:
Public recognition is vital, both for its own sake and as a means to mobilize resources for care, support, and a possible cure.
Excuse me, Sir. I don’t want a cure for WHO I AM. Granted there are some Autistic adults who do want a cure, but how else would you feel if you were treated like crap by society all your life and felt that there was no other way to live or get help?
Then you talk about normalization:
There is now general agreement that autism is a condition rooted in neurological and chemical processes and that there is a strong genetic component. However, the search for specific causes continues and it’s unlikely that any single candidate will ever account for every case on the currently accepted spectrum. Nor is there a cure. If you are “on the spectrum,” you may never feel that you are like other people, but with therapy you may learn to seem so, and that can count for much.
I DON’T WANT TO BE LIKE EVERYONE ELSE.
Why do I have to change for everyone else?
Why do I have to make myself miserable by not being myself?
Even when I try, it’s physically painful for me to mimic Neurotypical behaviors. It also brings about this anxiety that I cannot explain.
I oppose cures, eradication, and normalization. I ALWAYS WILL.
Look into these eyes behind the tinted lenses and tell me that they are soulless, black mirrors.
Image description: A close-up picture of my eyes behind my yellow tinted lenses.
EDIT TO ADD: My eyes are green, in case you are wondering.