One of the umpteen million reasons that I do this blog is to combat the negative stereotypes of autism. I usually get asked where this negative perception of autism comes from and one man I once debated with said that he thinks that people have no opinion on it because they know so little about it. This is a partially fair point and one that I’ll tackle here. The problem is twofold: the negative perception may arise from visceral reactions (since we’re ‘different’ and all) that we can overcome with the right kind of information and capacity for reflection but the big media prevents people from overcoming those initial reactions or chance for reflection by filling the voids of their ignorance with faulty and harmful ideas.
As I wait between shifts at my job, I am in a cafe with the radio on in the background. Just trite pop music since metal is not acceptable to most people (I think I once asked my mom when I was in a bad mood why they never play metal in coffee shops but I digress). Ads come on. I hear the word ’autism’ mentioned on the station so I naturally tune in, hoping that this wouldn’t be something that I’d have to write about. “Does your child have autism?” “Does your child have frequent outbursts?” “Is your child struggling to pay attention in school?” “Apply for a position at the Judge Rotenberg Center!” (All paraphrasing, I don’t remember the exact words) My reaction was this: “That place is still around in the year 2013?”
I will not spend too much time talking about JRC because people have written about it in the autism blogosphere extensively. Basically, JRC is a facility for people who need support in their daily living that provides a behavior modification program. It is the only institution in the United States that heavily uses aversives to condition their students. Since such techniques include things like the use of shock therapy and withholding of food, the things that they do technically count as abuse. The existence of this school and the funding that it gets feeds the idea that we must recondition autistic people to behave in a ‘more acceptable’ manner.
In my work as a mentor/support specialist, I’ve seen humongous differences between autistic people who have gone through therapies that focus on reconditioning and those who haven’t. The former are really boring in that they seem to try so hard to please me as their mentor and seem to experience only one emotion whereas the latter are always interesting, never set out to please me, and experience the whole gamut of emotions (to which they are usually more susceptible).
An organization responsible for the negative portrayal of autism is a non-profit called Autism Speaks, which has also been extensively covered by autism bloggers, leaving me with nothing original to say about it. Suffice it today that Autism Speaks, henceforth ASs, does not serve our cause. In fact, ASs effectively harms our cause. Their press releases regularly contain fear-mongering and stigmatizing rhetoric. They pretend to come from a place of concern yet very little of their money goes into actually providing services. The services that they provide help the families of autistic people instead of the people who actually need it the most: autistics themselves. (One little but important fact about them is that they don’t have a single autistic person serving on their main executive board, which is like having only men serve on the board of a women’s rights organization).
Recently, JRC and ASs have formed a partnership, creating the unholiest of unholy alliances.
These two institutions are two of the main players in the Autism Cure Movement. They appeal to two things: our neurotic desire for control and the uncertainty that comes with raising a child that doesn’t have the same brain wiring as yours. They make it seem necessary that your child must act like everyone else if they are to blend into society. They have singlehandedly made it socially acceptable to hate autistic people by cheaply appealing to our most visceral and base desires – the same ones that make us averse to those that are ‘different’ – rather than our higher reasoning faculties. Autistic people are very different and they paint this difference as something that needs to be eradicated rather than celebrated.
As I’ve said, people have already written about this stuff. I just note that this is where the view of ‘autism-as-disease’ or ‘autism-as-epidemic’ comes from. Here are some links so you can start your own research:
- An example of one of ASs’ terrible press releases, published November 11th, 2013 [Autism Speaks]
- A blogpost regarding the practices of ASs, focusing on the lack of representation of openly autistic people on its board with more links at the end [Autistic Hoya]
- A blogpost regarding the practices of Ass, focusing on the propaganda aspect, plus a video that put JRC in deep shit [Emma’s Hope Book]
- An openly autistic person resigns from working ASs on their science advisory board, citing lack of success in changing the organization from within [John Elder Robison]