Autism Awareness Month Post Three: An Open Letter To Autism Speaks

WAMTAC

To whom this may concern,

Recently, I read a post from https://loveexplosions.net/, and I was surprised at what it contained. The post showed the 2014 financials for Autism Speaks, and upon delving into the material, I was shocked at the specifics.

-Less than 4 percent (3.84% exactly) of your income went to autistic families, services, and grants, compared to 19.33% ($20,300,191) to salaries, benefits, and payroll taxes

-20.23% ($24,379,795) went to everything else. What is everything else???

I then decided to read on, and I found a November 2013 article from your co-founder Suzanne Wright from your first-ever national policy and action summit in Washington D.C. Here, I list some of her derogatory quotes:

“If three million children in America one day went missing – what would we as a country do? If three million children in America one morning fell gravely ill – what would we as a country do?”

“These families are not living. They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7. This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.”

“So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country…..We know children from minority and lower income families are not getting diagnosed as early as they should be…How about in school?  Is there a national curriculum for our children?”

“Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help. This is a national emergency.”

As someone who has lived on the Autism Spectrum (I have Aspergers Syndrome, specifically), for seventeen years, all I have is disgrace and disgust in my soul at Miss Wright’s words. If three million children in America one morning fell gravely ill? Why does she make it sound like we have a disease? Autism IS NOT an illness, science has proven that. It is simply a neurological difference, yet your co-founder makes it seem like we have cancer or AIDS.

Of all her words, this stirred me the most: “Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future…” Again, you portray autism in a dark and dreary light. Life on the spectrum is difficult, yes, but not nearly as terrible as the horror show she attempts to portray. Despair? Fear of the future? It is evident by usage of cliché of doom and gloom ideals that Miss Wright has no idea what it’s like to be on the spectrum. My parents, for one, did not live in fear and slept quite well. Rather than force-feeding me sympathy and puzzle pieces, they gave me keys to understand my different but beautiful life. I read the books by John Elder Robinson, who worked with Autism Speaks until he resigned after being unable to reconcile his beliefs with the ones your organization stands by. I wonder why.

Finally, the last two paragraphs speak to the two biggest problems I, and other autistics, find with your organization: the constant depiction of autism as something incurable and debilitating, and the lack of information on adult life with autism. Miss Wright mentioned children or babies six times just in the quotes I’ve mentioned. What about teenagers? What about the elderly? Autism doesn’t just go away, as with the size of your organization, I’m appalled by the lack of information on this issue.  I’m 17. I have a part-time job. I’ve escorted my sister at pageants, so I know how to dress for special occasions. I’ve had friends. I’ve been in classes and camps across Baltimore. What I’m saying is that, while there are plenty of cases of those who struggle to do these things, you do not represent us fairly. You do not represent the highly functional side of autism, and that is a disgrace. If you actually looked at all autistics, if you actually had autistics working for you, Miss Wright wouldn’t have to ask “if three million children in America went missing”. She’d see that we are already here. We are here, living, breathing, and loving life.

As someone who has come to know many of those on the spectrum, and learned more about myself, I can say your organization does nothing but harm for those on the spectrum. You paint a negative light on autism, and so children will grow up hating their autism. That’s the worst part. Rather than embracing their unique and unalienable beauty, they despise it and wish they were “normal”. You make parents hate their children for having little autistics. Rather than giving hope and shining light on a faction of America still not completely understood, you cast a shadow on our life, and our light.

But the greatest sin of all isn’t the allocation of money, or the hackneyed ideas about growing up with autism. It’s that you convince the masses of what autism deliberately destroys: that we’re all the same.

 

 

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17 Replies to “Autism Awareness Month Post Three: An Open Letter To Autism Speaks”

  1. You know, Devereaux, I don’t know the context of what her speech was, but a lot of people sensationalise to get a reaction. I think you need to look at what she was pitching for. The way I read her speech (or what you’ve put up), she’s pointing out that it is a national disgrace that not enough is being done for autistic/spectrum people. I may be reading it completely incorrectly, but she may have been trying to raise the profile of the situation, rather than denigrate. Bad choice of words on her part, & offensive to capable people, sure. & going on to your next post, no, I don’t think they addressed your concerns. I think they tried to respond without making admissions, commitments, or offence. BTW, I am NOT affiliated with Autism Speaks – in fact, I am not even in America.

    The following link was on Australian tv last night – it’s not autistic/spectrum, it’s Down Syndrome, but it’s a fascinating beautiful way that issues can be brought to light. Watch it if you have the time.

    http://iview.abc.net.au/programs/you-cant-ask-that/LE1617H002S00

    The whole series is amazing.
    Daria. xxx

    Liked by 2 people

    1. Appreciate your take Daria, but the choice of words is precisely the problem. It was offensive, and it made us seem one way instead of another. I don’t know what she meant to say, but what she did say didn’t go over well with a lot of us.

      Liked by 1 person

  2. Thank you! I am the mother of an amazing son with Aspberger’s who, through his beautiful eyes has taught me what a gift he has and has awakened me from the deep sleep society has induced in me through conditioning and manipulation. So very well written! 👏👏👏👏👏💖

    Liked by 2 people

  3. Have you read the (fictional) novel The Rosie Project? Read it! It is a refreshing antidote to all the negative stereotypes out there about autism, about how people function in general. There is also a very specific affirmation that autism is NOT a disease but a different perspective due to unique neurological wiring.

    Liked by 2 people

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