What Is Wrong With Autism Awareness Today

What Is Wrong With Autism Awareness Today

As I was writing my last post, I got a little worried.  I was worried about whether or not my representation of Autism Speaks reflected how they were today.  Much of my information reflected data and videos from a few years ago.  So, I was worried about being looked at as a shill who was pedaling old information to support an agenda….until I saw this video.

This 43-second video not only alleviated my worries; it also encompasses everything that is wrong with autism “awareness.”  The video is of a simulator created by Autism Speaks to show people what it was like when their child did not make eye contact with them.  It looks innocent enough, but when it is explained in proper context, that innocence is replaced with frustration and anger.  It shows how Autism Speaks is a group run almost exclusively by neurotypical people, doesn’t consult autistic people in their decision-making, spreads fear and stigma of people with autism, and does not always make wise choices with their funds.

This video is all about neurotypical people.  It is all about their feelings about autistic people not making eye contact.  Not once does it speak to how autistic people may feel when they make eye contact.  This is most likely the result of nobody asking an autistic person about eye contact.  Although there are some who have no issues with eye contact, there are many who do.  There are many who will lose their train of thought when forced to make eye contact.  For others, eye contact causes anxiety.  In a study by Dalton, et al. (2005), they showed that eye contact would cause activity in the amygdala of an autistic person’s brain, causing an emotional response.  However, with neurotypical people, eye contact would activate the right fusiform gyrus in their brains, eliciting no emotional response.  Apparently, this isn’t important to Autism Speaks.  To them, being neurotypical is the right way to be and being autistic is the wrong way to be.

This video also speaks to another important idea worth noting: neurotypical privilege.  It speaks to how autistic people are often told that they have to change their behaviors to appear more neurotypical.  It is like having to put a mask on every day in order to go outside.  Neurotypical people never have to worry about that mask because they have never been told to significantly change their behaviors in order to be accepted in society.  The implication from this video is that more needs to be done to get children with autism to make eye contact and to work on neurotypical terms.  These ideas do nothing but spread the idea of the autistic person as an “other.”  Somebody to be feared.  Somebody they need to get rid of.  It does nothing to help autistic people.

It bewilders me that Autism Speaks decided to spend money on this.  I don’t know how much it cost, but I imagine it cost a pretty penny to make.  I think of all the places it could have gone, and yet, it was wasted on a stupid and useless piece of technology.  Shows where Autism Speaks priorities are!

I would like to conclude with my two most important points.  The first being that this video and this piece of technology shows that Autism Speaks isn’t about autistic people at all.  It is about the people around autistic people.  It is run by neurotypical people to serve the needs and desires of neurotypical people.  The goals they have reflect neurotypical people’s desires for autistic people.  It is clear that Autism Speaks does not really care about the desires and needs of people with autism.  If they did care, there would be more money going to supports and services for autistic people and their families.  They certainly would not have wasted money on a piece of technology meant to demonize autistic people for something as harmless as not making eye contact.  My second point I want to make is that this video and this piece of technology shows that many of the behavioral changes expected of autistic people aren’t for the purpose of advancing an autistic person; they are for the comfort of the people around them.  The piece of technology Autism Speaks shows in the video was made for eliciting discomfort in neurotypical people.  It shows that Autism Speaks is more concerned with their comfort than they are of autistic people’s.  The fact that eye contact makes many people with autism feel uncomfortable does not seem to matter to them.  As long as neurotypical people are happy, Autism Speaks is happy.

“If you won’t listen to reason, there’s always…Towanda.”

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