Autism Speaks Never Spoke For Us

This is the first in a series of four posts on autism this month.

moneypuzzle2April. This used to be the month I despised most. It’s the time of year when the word “autism” is plastered on everything from pretzels to Toys”R”Us posters. (I still wonder where that money goes exactly…) Well-meaning friends and family would tell me how they made a donation to Autism Speaks or purchased an item which supported the organization. I’d cringe. They thought they were helping. They saw nothing wrong with the puzzle pieces, the demand for a cure, and felt Autism Speaks was helping people like my daughter. I wrote a lot about why I could not support Autism Speaks and frequently tried to explain it to those around me. Sometimes, it would get so tiring and the month of April was always the worst. I’d breathe a sigh of relief when May 1st came around.

Autism Speaks repeatedly presented the public with a desperate and depressing message. This 2006 article displays the terminology used from the get-go with the Wrights and Autism Speaks. Words like:

“epidemic”
“devastating”
“80% divorce rate”
“kidnapping”
“lost everything”
“combating autism”
“urgency”

Bob and Suzanne Wright continue on in that interview, comparing autism to AIDS and cancer and mentioning the $100,000 a year tuition for the school their grandson attends. That is the foundation for Autism Speaks: their focus was on the cause and a cure, the financial and emotional burden of autism on parents, and then, finally, providing resources for autistic children.

It’s telling that even today, eight years later, their priorities remain the same. I was initially happy to see the link, “Autism Acceptance” on their website today. When I clicked, I saw, “We know that autism acceptance is something many in the autism community are also advocating for,” and a few related links. Basically, here’s a crumb for you people demanding we stop whining about autism. That page nor their words state that Autism Speaks is advocating for acceptance, that’s left for others to deal with. Some things never change.

Their Mission Statement:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society: and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

On their About Us page:

“Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.”

The quote at the end of their Founders’ Message:

“This disorder has taken our children away.
It’s time to get them back.”

At the time of my daughter’s diagnosis, Autism Speaks’ focus was on finding a cure and highlighting the misery they see autism as. It appears this is still indeed the case today. I never had a need for a pity party and I didn’t see my daughter in need of a cure. I couldn’t relate to the mothers in the Autism Everyday video nor to what the Autism Speaks website was telling me my priorities should be. What I needed were services and help to make sure she had access to the appropriate resources. My biggest concern was for her future. I saw how these organizations neglected autistic teens and adults altogether. Some “advocates” denied any autistic adults even existed. All too often autistic adults, particularly those that could advocate for themselves, were ignored when they did speak out. I feared for how my daughter would be treated in high school, at college or vocational training, and if she would have the services needed to live on her own. My daughter is in a different place today, she made more progress than what the professionals were predicting. Perhaps my daughter will not need those resources, but there are far too many children, teens, and adults who do and will need them. Autism Speaks was doing little to nothing for them at the time, I’m not sure how much has changed. I see today, on their website, they do finally mention autistic adults and it appears some of their money is going toward programs which may benefit them. I saw more resources for teens and adults, and what appears to be better advocacy than the last time I was on it (I’m guessing 2009). I’m happy to see that but in all honesty, when the quotes above are on page after page, I still find myself unable to support Autism Speaks.

April isn’t such a slug in the gut as it once was. Today, my daughter has minimal, and even only occasional, “signs” of autism. And no, not because I detoxed her or followed any other absurd protocol. I loved and supported her, accepted her differences, ensured she received the therapies she needed and special education services. We resolved many of her physical health issues. Collectively, all of those efforts plus her own unique autism journey she is/was on, we are at a place today where I no longer say she is autistic. I am aware that with puberty around the corner, or even later in life, this could change. I’ve learned from other families and autistic adults, there can be an ebb and flow to the spectrum. Even her neurologist has said things could look different once again in a couple of years. My daughter continues to need and receives occupational, speech, and at times physical therapy as well as counseling. She still has sensory issues and eating difficulties. She receives services from the school district. I guess I’d consider myself one foot in, one foot out the door of being an “autism parent.” Not sure I ever really liked that label anyway. I was a parent to my children, one who just needed to be communicated with and educated differently. I didn’t accept the picture Autism Speaks and others presented for “autism parents.”

I never saw autism as the big bad wolf. I learned a hell of a lot from my youngest, and I’m a better person for it. I still shake my head when I see puzzle pieces everywhere in April. I still educate others on the dangers of viewpoints from people affiliated with Autism Speaks, TACA, and other so-called autism charities. Just this weekend, I was in Walgreens and saw that Lindt is donating 10 cents to Autism Speaks for every Gold Bunny sold. Over the past six years, they have donated more than $600,000 to them and I can’t help but wonder how that single partnership has helped autistic individuals. Has it gone toward education programs? Training first-responders how to approach and work with autistic individuals? Has it created multiple job training resources? The one thing I do know, I’ll be purchasing my chocolate bunnies from another company this year. It’s my hope others will also reconsider where they put their money this month.

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5 comments

  1. While I think your article is great, and everyone’s labels are their choice, I find it somewhat disingenuous to say your daughter is no longer autistic. She’s autistic, she just doesn’t look it. We don’t “grow out” of autism; it can’t be “cured”. We just learn to adapt and cope. I’m genuinely glad your daughter seems to be able to do that, but it doesn’t change reality. Still, I wish your family the very best.

    1. Thank you for your comments. I agree with your statements completely. Perhaps I should have worded it differently, my point was that doctors no longer label her as being autistic. We moved a couple of years ago, and her new doctors (with no experience with her prior to then, aside from what her previous therapists and doctors wrote) only know her as she presents today (basically someone with a history of developmental delays and neurological disorders, who still has sensory issues & is quirky). I agree, she has learned & adapted. It’s odd for me to say “she is autistic” when doctors now say she most likely wouldn’t qualify for the diagnosis. I just want to be clear that I have no issue labeling her as autistic, I just would feel like a fraud given it’s not currently a diagnosis she carries though I also realize one does not grow out or be cured of autism. (I often wonder if things would be different if she were a boy. I’ve read about girls vs. boys on the spectrum, and how girls are sometimes overlooked and/or present much differently, etc.) Thanks again for your insight, I appreciate it!

      1. Thank you for your clarification; that makes much more sense. I still might disagree with the doctors, but that’s on them, not you! Best to you.

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