Image Credit: Wendy K. Baskin
November 21, 2013

Autism Speaks Leaves Me Speechless

AWhen my son was three years old, he was formally diagnosed with autism. Not much happened as a result, other than ensuring his therapies would continue and not be cut off as he aged out of Early Intervention. That little abbreviation on his paperwork, “aut”, was the key to the intervention kingdom. Jack was still the active, vibrant, loving kid he had always been. Giving him a label didn’t change that.

In fact, we thought he was, and is, pretty special. Whether it’s the autism or his innate personality, Jack has a way about him that is endearing. He is genuine, he is intelligent, and he is really, really funny. That’s why I started Autism is a Trip; I wanted to share my special boy with the world.

About six months after the official diagnosis, we got a casting call for a video about autism. It wasn’t that unusual, we did live in Los Angeles, after all. The theme was “I Am Autism,” and they were looking for families. I jumped on it. Who better to help the world understand and accept autism than my beautiful child? (Mom bias notwithstanding.)

We set about taping the required pieces, including many scenes of Jack playing, smiling, and being his happy-go-lucky self. We were also asked to say, as a family, “I am autism,” in a somber tone.

That right there should have been my first clue.

We didn’t get cast in the video, and I honestly couldn’t figure out why. Jack has a smile that can ignite a room. He is a bright, shining light.

Who wouldn’t want to portray autism as a positive thing?

Autism Speaks, that’s who.

Months later, when the video came out, I was appalled. Instead of showing people with autism having promising, hopeful lives, it was quite the opposite.

The doom and gloom and despair of the Autism Speaks campaign shocked and disappointed me. It turns out Autism Speaks has no interest in the positivity of autism. Just the opposite, in fact.

Autism Speaks wants you to believe that autism is a horrible, terrible thing. A disease that needs to be stamped out.

Fast forward to November of 2013, five years later.

When you have small children, five years is the blink of an eye. But really, it’s a pretty good span of time. Long enough for people to learn more about autism and its myths and truths.

Long enough for Carly Fleischman to learn how to speak through her computer and show the world that autism isn’t a closed box.

Long enough for Temple Grandin to become a household name.

Long enough for us to realize that Jack is autism, and autism is Jack. They are one and the same.

Five years was also long enough for Jenny McCarthy to spread misinformation and scare countless parents out of vaccinating their children for fear of “getting autism.”

Long enough for Autism Speaks to collect millions and millions of dollars in donations to help support people living with autism.

Except, they didn’t. They collected the millions, but they had – have – no intention of supporting autistics as they wish to be supported and respected.

On November 11, 2013, Autism Speaks founder Suzanne Wright made a statement. She said autism is an epidemic. A crisis. A death sentence for entire families.

No hope, no promise.

No bright, shining light.

She insists families with an autistic individual aren’t actually “living,” rather, they are “surviving.” They are in misery, sleep-deprived, and failing.

She states that autistic children are helpless, and need to be cured.

She never mentions autistic teens, adults, or parents.

Not once.

Autism Speaks is not for autistic persons, Autism Speaks is for terrified parents. Period.

In fact, there are no autistic individuals involved in the administrative workings of Autism Speaks at all. Not a single person with autism on the board of directors. After Mrs. Wright’s announcement, John Elder Robison, an autistic blogger, author, and father, who had been advising AS on their Science and Treatment boards, quit.

Quite vocally.

Autism Speaks is who the average person on the street associates with autism. They are the Susan G. Komen, the American Cancer Society, the March of Dimes of autism.

People assume they exist to help people with autism and support them, which is a logical conclusion.

But Autism Speaks spends a lot of their money on things not related to autistic persons. Salaries, for one. Media exposure. Research into finding causation and a cure for spectrum disorders.

In fact, only a tiny percentage of the millions of dollars they take in goes toward helping actual families and autistics.*

To that end, many, many autistic individuals do not want their support.

We do not want their support.

Autism Speaks does not speak for us.

Image Credit: Wendy Baskin

Image Credit: Wendy Baskin

Jack definitely has challenges, but his diagnosis didn’t automatically make them insurmountable. Instead, it gave us reference when figuring out how to handle certain situations.  Autism is a part of the entire family, and we treat it like we treat everyone. With love, patience, and a little frustration. All of my children can be trying at times, and yes, autism makes Jack’s life a little different. But he’s been this way since birth, so giving it a name really didn’t change anything.

Our job as parents is to guide our children into adulthood. It is our duty to give them the tools they need to succeed, no matter what that entails. We are charged with loving, supporting, and raising our babies into adulthood, and I take that task seriously.

I do not know what the future holds for Jack, but I will move mountains to give him the same opportunities our three other sons enjoy. My greatest hope for the future is to see him become a successful, thriving, happy adult.

Whatever that means for him.

Autism Speaks seems to forget that autistic children become autistic adults. Many live on their own, hold jobs, contribute to society, and become parents. Many live “normal” lives.

Autistic children are not doomed.

The only time Mrs. Wright comes close to even mentioning autistic adults is here:

“In the next ten years, 500-thousand Americans with autism will be growing up and out of the system…There is no national plan to build a city for 500-thousand people.”

I don’t even know what to say to this, it’s so absurd. To her, it would seem the very idea of autistics living and thriving in an integrated society seems impossible.

We don’t understand that mentality. We don’t understand impossible.

I am Jack’s mother. Jack is autistic. Someday Jack will be a teenager, and then an adult. Until then, I am here to advocate for him and pave the way for his independence.

I am here to speak for him until he is able to do so for himself.

Autism Speaks does not speak for us.

***I know there are families out there who have directly benefited from Autism Speaks. Sadly, they are few and very far between.

Featured Image Credit: Wendy Baskin

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