Diving Into The Shark Tank

I admit it. I’ve been wary of diving into the controversy over Autism Speaks. Today I find myself in a position where I can no longer sit on the fence.

I’ve always had mixed feeling about the organization- and as is true to my nature I tried to view them very holistically. Before I cannonball into what inspired me to write today, I feel like I should first tell you why I’ve been on the proverbial fence. Before I begin I will respectfully ask that no tomatoes are thrown.

Many in the autism community are offended by Autism Speaks use of the word “cure” and even more angered by their pursuit of one. They see it as Autism Speaks flagrantly announcing that autistic people are broken and flawed; that they have a disease akin to leprosy. Words such as “epidemic” are interpreted as fear mongering techniques. (1 in 50 school age children? If not an epidemic, what is it?)

Let me tell you why I disagree. (Don’t worry the cannonball is coming.) I disagree because autism is a spectrum disorder. Specifically meaning that each person with autism is different. Their strengths are different. Their challenges are different. No two people on the spectrum are the same. Ever.

The majority, if not all who are offended by this type of speech are not severely effected. Those with autism who protest this language are generally high functioning- not without challenges of course but they have found a way to live with the challenges that autism has given them. Parents, relatives and friends who protest are in some ways, much like me. Their loved one has autism and they do a simultaneous dance of celebration with what has been overcome and wanting desperately to allow their loved one freedom to be themselves, and to be loved for who they are. Autism shapes people, it quite often manifests in special gifts and talents that may (or may not- how do we know?) exist because of autism. It becomes a part of who you are and everyone wants to be respected for who they are. I get that.

What I don’t understand is why people who do support a cure are vilified. Supporting a cure does not mean that their love for someone with autism is less. It doesn’t mean that they don’t respect who their loved one is. It means to me that they know the dark side of autism, and want desperately to help the one they love to be free of the chains that autism binds around them. The pain of autism is immense for so many families. How can we look the other way from this and pretend that autism is just a simple quirk? How can we ignore the child who repeatedly bashes their head against a wall to relieve the frustration that they can’t speak? How do we turn away from the mother who is still cleaning her son’s diapers even though he is closer to adulthood than infancy? Why do we close our eyes, ears and hearts to the brutality of severe autism? Is it because it is uncomfortable? Because we fear that if we linger too long in the dark side it will engulf us too?

Are we that disconnected as a community that we only identify with the part of the spectrum that is in our lives? Do we each take our own puzzle piece, run around comparing ours to others and only surround ourselves by the ones that closely match our own? Are we really that segmented?

I don’t think that there is a right or a wrong answer to wanting to know the how’s and why’s of autism. I’m a software developer and very much a problem solver at heart so perhaps that is why I feel this way. Or maybe it is deeper than that. Maybe it is because when I watch my beautiful daughter get lost behind the wall that autism erects I too want to smash it down. I want desperately to see the look of confusion and longing for connection vanish from her eyes. I’m her mom. Aren’t I supposed to be able to fix everything??

Does thinking that way make me a bad mother? I don’t think so… I think it is natural parental instinct.

It’s true that I’ve always thought that Autism Speaks should include those with autism in their conversation; that I’ve been continually dismayed by their financial management and personally insulted to learn that every donation I gave them did not really go to helping those with autism but simply rolled over into other fundraising events- among other things I can’t support. I no longer donate to them because of this- however until today I had tried my best to reserve judgement. The voices on both sides of the fence were loud and I had a hard time deciphering truth from interpretation.

Someone that I have the utmost respect and admiration for works for Autism Speaks. She will know who she is if she reads this.*  She has devoted her life to fighting for insurance coverage that will provide the therapies that people with autism need to learn their way around the world. She has a son with autism whose smile makes me smile, even if I’ve only seen it in pictures. I sometimes tell people that when I grow up I want to be like her. A powerhouse for change with a heart that never quits.  Maybe it was this personal connection that made me sit on the fence for so long.

Now the cannonball. Today I read a revealing post by Lydia Brown in which she describes Autism Speaks association with the Judge Rotenberg Center. You can find that here: http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html. The JRC operates with this methodology “if you pair an unwanted behavior with a painful stimulus, the unwanted behavior will go away.” (Quote from Lydia Brown’s article) The stimuli they use include physical abuse and what I can only call torture. According to Lydia Brown at least 6 people have died as a result. How can such a huge organization that claims to advocate for those with autism collaborate in any way with a Center who blatantly abuses people on the spectrum??? I am sickened and appalled.

After learning what I did today; after reading John Elder Robison’s resignation letter in which he implores them for not accepting his valiant efforts to include those they represent in their decisions and message (which you can find here: http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html) I find myself in absolute awe of the audacity of the organization to so flippantly disregard those it claims to be for. I wish I could say I was angry, but I am not. I am sad. I am sad that an organization with the power to do so much good for those with autism is instead using it to exacerbate the negativity that all of us in the autism community fight every single day.

“Light it up blue?” No thanks. I’ll forgo the passive lights and do what I do best: Get up and DO something.

**Everything I’ve written here is based on my own personal experiences, conversations and observations and is NOT intended to speak for anyone but myself.**

*I choose to not use names unless it is to give them credit such as Lydia Brown and John Elder Robison without consent.


4 thoughts on “Diving Into The Shark Tank

  1. WOW !!! I feel your anger or Sadness as you call it but for me it’s anger to think most of us just take it for granted that some organization was taking good care of of those who have Autism.You have written a very good report on what is not being done.I hope this very article hits the newspapers.I’ll forward it to all my friends as I’m sure they would never guess what is going on behind closed doors.
    Thank you for your aggressive fortitude.
    Sincerely, Charles Drinkwater

    • Thank you! Your comments and support mean so much. It is very disheartening to see the reality of what is happening within organizations we blindly trust because they are massive in size and reputation. Everyone with autism deserves better. Their families deserve better. To make that happen we have to break the silence. “Never be afraid to stand for your beliefs, even if you stand alone.” ~Jess

  2. Jess,

    I admire you and all that you do. Thank you so much for being the voice and strength for others. You are a true Angel and Godsend. xoxo

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