Why Autism Speaks doesn't speak for me

To be completely and harshly honest, I was not a normal child.

Well, no parent wants to say that their child is normal, instead choosing words like “special” or “gifted” to describe any run-of-the-mill eight year old.

However, I got a different word. I got “ADD.”

I was diagnosed with Attention Deficit Disorder when I was in fourth grade, due largely to my constant fidgeting and my extreme social awkwardness.

My parents, for the most part, were satisfied with this explanation.

I generally tried to ignore it.

I mean, what fourth grader wants to be told that their brain works differently from all their classmates?

No, I was determined to be “normal,” and so I fought off every sense in my tiny grade school brain that I was anything but that.

However, all those deep, dark feelings of wrongness eventually caught up to me the day that my mother first brought home a book about Autism from the Murrysville Public Library.

In an instant, all doubts about my previous diagnosis immediately rushed to the service of her mind, and I was almost immediately tested.

Of, course, in my mind, this was the worst thing to ever happen to me.

In my mind, ADD was bad enough. Autism was worse. It was the cause of every nerdy social trainwreck that had stumbled across my television screen, and so I took the implication that I could have this condition very, very badly.

Of course, the psychologists all agreed: I was autistic.

I took the news as a tragedy, but what I didn’t know was that this diagnosis was one of the best things to ever happen to me.

Why?

Because finally I had an explanation for every horrible feeling that had ever plagued me during my childhood.

My sensitivity to bright lights and rough fabrics? Autism.

My inability to understand figurative language? Autism.

My drive to avoid a hug from any person at all costs? Autism.

When you’ve grown up for your entire young life knowing that you were different but not being able to classify yourself as anything but weird, finding a reason for all your annoying little quirks is honestly quite freeing.

But Autism is so much more than all those little quirks that separate the “normal” people of society from the neurodivergent.

For those who don’t know, Autism is something you’re born with, according to developmental disorder parenting website My Child Without Limits.

And considering that one in 68 children are born autistic, it is honestly confounding how many misconceptions and biases exist against people with this condition.

To combat this, the autistic community needs a voice; a way to make their opinions known; a way to… speak?

Autism Speaks. Sounds familiar, right? It's only the most famous organization working with autism, and is behind all those little blue puzzle pieces you see on the backs of minivans and the counter of your local Panera each April.

Autism Speaks was founded in 2005 by Bob and Suzanne Wright after their grandson was diagnosed with autism.

In the past 12 years, the organization became notorious for research into autism, searching relentlessly for possible causes and cures.

While this may seem great, it's actually more complicated than that.

Autism doesn’t just affect sensory processing and social functions, according to an interview with Dr. Jeffrey Anderson for University of Utah Health Sciences Radio.

Autism shapes a person’s entire personality, and the idea that a person needs to be cured of their personality, is horrifying, dehumanizing, and for me and many others with autism, extremely offensive.

Anderson even said that, “In some children, [autism] is a gift,” and in my experience, this is absolutely true.

But of course, there is a plethora of difficulties that are also hidden underneath the wrapping paper of this gift.

Social difficulties, speech impediments, and sensory processing disorder can all lead to problems for autistic individuals attempting to pass in neurotypical society.

This is why experts, including Anderson, recommend various treatments to help autistic children cope with the demands of society, rather than the elusive anti-autism pill Autism Speaks has been searching so hard to find.

These treatments can include group programs for autistic individuals, speech therapy, or sensory integration programs like art or music classes, animal therapy, or sports, according to Autism Society.

Another day-to-day way to manage sensory needs is stimming, which is a repetitive motion or sound that autistic people make to help them focus and deal with environmental stressors according to Autism Spectrum Explained.

This allows autistic people to cope with their individual needs without harmful demands to assimilate into a neurotypical way of life or ignore their needs all together.

However, Autism Speaks does not use enough of their funds to actually help autistic people or their families deal with their needs, choosing instead to pad their paychecks or search for that elusive cure.

According to the company’s budget report for the 2014 fiscal year, they only spent $15.7 million of their total $57.5 million on family grants.

They also spent $23 million on employee payment, with their board members earning six figure salaries.

The majority of their money, however, went to research rather than direct aide.

Historically, this research has not even been remotely helpful, with board members spending years voting to increase the budget for research into the effect of vaccinations on autism despite overwhelming evidence of no such link and a drive to find a link between autism and genetics, forming an eery link to Autism Speaks and the eugenics movements of past years.

Autism Speaks’ idea that autism’s effect on people needs to be obliterated rather than managed is extraordinarily ableist.

This is illustrated horrifyingly well in their advertisement “I Am Autism,” which features video clips of lonely, scared kids with a voiceover of a demonic man claiming to be autism and bragging about his success in ruining marriages, social outings, and lives.

This video shows the true bias against real autistic people that Autism Speaks perpetuates, contributing to the idea that people with autism need to be saved from themselves.

I do not need to be saved by an organization that uses my disability as an excuse to make six figures a year, promote anti-vaccine movements, and scare parents with wannabe horror movies about the plague of the 21st century.

Therefore, for my sake, and for the millions of people that have or will be diagnosed with autism, we must find new ways to show our support for this community other than by buying a blue puzzle piece cookie from Panera every April or by participating in an Autism Speaks Walk.

There are other charities that do more for actual autistic people, like Autism Spectrum Disorder Foundation or the Autism Society of America.

Autism does speak, through the voices of the people who actually have it, not through a company obsessed with curing the people it claims to support.