Saturday, September 5, 2015

False Hierarchies and the Backlash Against Silberman's NeuroTribes

Hans Asperger, with guns to the heads of the children he treated, created the myth of "high functioning" and "low functioning" Autism in a desperate attempt to save some of them from being killed in concentration camps.

Those who insist on such a distinction today have no such excuse -- and are leading the backlash against Steve Silberman, the journalist whose meticulous work uncovered this history.

In a review typical of this backlash, Dr. Jennifer Margoulis writes "Silberman is conflating children and adults who have some neurodiversity with children and young adults who are suffering from severe autism and related health issues like gastrointestinal problems and severe pain."

Let's parse her statement a bit.

We'll begin with the most obvious -- Margoulis implies that proud Autistic people and our allies aren't interested in finding solutions to mitigating conditions that are common among Autistic people such as gastrointestinal problems and autoimmune conditions.   Helping fellow Autistic people get to more happily inhabit bodies is on of my passions as an herbalist, and most of my Autistic patients have become amateur medical scholars of their own conditions -- we get obsessive about or special interests, or so the diagnostic manuals say.   One thing many of have found is that conditions we are most prone to are also common among trauma survivors.    To a large extent, they are likely linked to the experience of being neurodivergent in a culture of compulsory neurotypicality.   (Organizations that claim to speak for us silence our voices will funding eugenic research aimed at preventing or existence in future generations.  Our styles of speaking, thinking, and self-regulating are pathologized, often punitively.  Some of us are institutionalized and subjected to electro-shock therapy and chemical lobotomy.   Autistic People of Color are frequently looked in cells in schools as children and all too often become targets of police violence.)

But more troubling is Margoulis's main point -- that we need to make a distinction between "adults who have some neurodiversity" and "children and young adults who are suffering from severe autism."

As I have written elsewhere, such a distinction is false, and serves to further capitalist agendas that value us according to our ability to participate in the creation of wealth.   Those of us who are assigned the category of "high functioning" maintain a performance of neurotypicality at a high cost to our health in order to get access to the things we need to survive in this culture.  And, just as the late Dr. Oliver Sacks found with silent Parkinson's patients who were presumed to be mentally vacant, we are discovering that non-speaking Autistics have inner worlds that are rich and uncannily similar to those of speaking Autistics.

Breaking things down further, talking about "adults who have some neurodiversity" suggests that neurological divergence is something to be accepted in moderation, but policed.  "You Aspies are ok Sure, you are weird, but you talk with us.  Yeah, we do like it best when you are in a separate room writing code.  But you aren't like those other ones.  You don't bite and kick."   It echoes discourses around previously pathologized aspects of human diversity, like sexuality -- "Middle class lesbians and gay men who want to get married and own houses and avoid public displays of affection are ok, but not the flamboyant ones who wave their sexuality our faces.  And Trans people skeeve us out."

It is wrong when talking about sexuality, and it is just as wrong when talking about neurobiology.

We're here.  Our neurobiologies are Queer.  Get used to it.


Suzer said...

Gratitude. You always make me think. Gratitude.

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Anonymous said...

I agree with some of your assertions. But let's clarify some things:-
1. The work of Hans Asperger was not uncovered by Steve Silberman. It was available in the 1960's to medical students in my country;
2. Steve Silberman says nothing new, yet his PR machine makes out like he is responsible for bold new discoveries. He isn't. He's making a buck, and possibly seeking atonement for the shoddy way he disparaged us decades ago;
3. As an Autistic person, diagnosed in the 1960's by a medico who was intimately familiar with Asperger's work, I am sick and tired of non-Autistic people speaking for us. Especially as a woman. Steve Silberman is just another one;
4. There are many qualified Autistic people in Autism research, who have been trying for years to be heard. I am one of them. It is a constant battle to be listened to if you're not saying what people want to hear. All of Silberman's information has been published before - so why are people listening to him over others? Think about that carefully;
5. Everything we know about Autism (whether fact or methodologically unsound) was derived from human beings. Steve Silberman doesn't get to appropriate the hard work and contribution of others. That information was always ours - he can find another minority group to exploit for $$$. The Autism Industry is already too crowded with leeches.