Autism Speaks should stop speaking, start listening

Feeling a little blue lately? I am. April showers aside, this month is also Autism Awareness Month, which means everything is blue.

From the Empire State Building in New York to the Sichuan Tower in China, buildings, landmarks, businesses and schools are lit with blue all over the world this month in a campaign driven by Autism Speaks. As with many of the big awareness pushes, there are also plenty of brand partnerships and celebrity-studded PSAs involved.

Initially this campaign was focused on early recognition and diagnosis, the idea being that the earlier autistic children could begin receiving services and interventions, the better. But what started out with seemingly good intentions quickly turned into a beast of an entirely different color.

Even in its earliest incarnation, the campaign’s hook was fear.

The message was clear: Do all of the “right” things before your child is 5, or the future is bleak because they won’t be normal. It wasn’t quite that blunt of course, but it wasn’t well disguised either. As the parent of an autistic child, this was frightening and distressing. But not for the reasons you might think.

Over the years, Autism Speaks has become a powerful organization with a great deal of money, influence and an agenda. The people behind Autism Speaks believe that autism is just about the worst thing that can happen to a family. They use words like epidemic, despair, crisis and broken; they refer to autistic children as missing, as though they’ve been taken, and families as “existing, not living” and “fearful of the future.”

They want to “cure” autism — despite the fact that it’s not a disease. They also want to prevent it, so that it no longer exists. This is the “awareness” they offer. Autism will break your family and ruin your life. It must be eliminated.

Aside from being blatantly dehumanizing and disrespectful of people with autism, this is also dangerous.

In 2011, a Colorado woman smothered her 6-month-old baby to death because she thought he was showing signs of autism. When questioned by police, she told them she thought having an autistic child would emotionally and financially ruin her life.

Those ideas come from the message that Autism Speaks broadcasts far and wide, and a quick internet search reveals a heartbreakingly long list of similar cases. Sadly, many in the media and public paint the mothers who’ve murdered their autistic children as sympathetic figures.

Last summer, police in Oregon tasered an 11-year-old autistic girl who’d wandered from her home and was found walking along the side of a highway. Their explanation was that they’d warned her to stop twice and she didn’t respond. Do you think police would tase a non-autistic child who was reported missing and found walking on the highway? Did you even see this on the news? It barely got any press.

Where are people getting these ideas from? Why are law enforcement and the media so unconcerned about the mistreatment of an autistic child?

Maybe you should ask Suzanne Wright, founder of Autism Speaks, who penned an op-ed last November lamenting the tragic lives of the parents and caregivers of autistic children. No real focus on the children themselves, just on everyone who, in her opinion, is so terribly affected by them. Funny thing about Autism Speaks is that there is not a single autistic person on its advisory board or involved in any significant way in the organization. And there are many autistic adults who have tried to be a part of it.

John Elder Robison is one of them. Robison is an author, former sound engineer for Pink Floyd, guitar designer for KISS and luxury car restorer. He has served on committees and boards for the Department of Health and Human Services, National Institutes of Health, Institute for Autism Research and the Centers for Disease Control. For four years, Robison tried to advise and educate the staff of Autism Speaks but his efforts fell on deaf ears. This quote from his 2013 letter to the president of Autism Speaks says it all.

“We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.”

Autism Speaks talks about wanting to help families, yet only 3 percent of its expenditures for the 2012 fiscal year went to family services grants and awards. Forty-six percent went to salaries, benefits, payroll taxes, travel, meals, lodging, entertainment and catering for employees.

I would never try to suggest that autism is without its difficulties. On the contrary, there are many significant challenges, and those challenges vary greatly among families. But this kind of awareness and dehumanization is not what we need. We need understanding, acceptance and support.

What if I tell you that autism is not something to be feared, that while my life is different and requires some unique navigation, I don’t consider my son a burden. That even though there have been rough times, the unbridled joy he experiences and shares with the world when he laughs is one of the greatest gifts I’ve been given. That he’s sweet and will kiss your forehead to show his affection; that he loves to jump, swing and ride a bike, eat french fries, hold my hand, laugh and be tickled. Would you think he was missing? Part of a terrible epidemic? Something that needed to be eliminated?

He was not taken away. He’s here, he’s a human being, he’s my son. And he has a right to live as he is, different as he may be, without being seen as an expendable problem.

— Sarah Low is a staff writer at The Beachcomber.

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