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Sunday, 15 December 2013

An open letter to Autismspeaks

Dear Autismspeaks

I write this as a man diagnosed with Asperger’s Syndrome who is a high functioning business professional, as well as a dad of two girls, one of whom has been diagnosed with Autism, the other of whom is recognised as having sensory processing disorder and autistic traits, diagnosis pending.

As I am sure you know, there is a growing movement amongst the ASD and ASD supporters community to encourage organisations to distance themselves from you, and a growing number of other Autism and other Disability charities and organisations are also speaking out against you.  I am wondering if you know the reasons why?  If you are not sure, there is a page at http://boycottautismspeaks.com/why-boycott-1.html which spells it out in great detail, but this is the official reason, if you like. Every individual will have their own specific reason.

For me, there are two things that Autismspeaks could easily change that would make me more likely to be sympathetic to your cause. I could easily say that it is your apparent drive to find a “cure” for autism, which is upsetting.  Let me be clear: I do not need to be cured, any more than gays do. My daughters do not need to be cured.  As a parent I need to find a way to adapt my life to them, not the other way around. This would be true whether they had ASD, Huntingdon’s, MS, Cystic Fibrosis, were paraplegic or any other condition, or simply if they were ultra-demanding, high maintenance people with no medical issues. Children are always hard.  This is offensive, but its not my main complaint.

Nor is your history, such as supporting the fallacy that autism was caused by vaccinations. Who knows how many illnesses or deaths in children were caused by that little gem, which history has demonstrated to be a lie concocted by a man determined to sell his own vaccination, and so spread slander about the existing MMR.  This was an awful mistake that your organisation made, but people make mistakes.

Even your support of institutions which use “therapies” that would have people trialled for war crimes is not my primary concern. Awful, but not my personal bugbear. Nor is your poor record on using your donations directly for the ASD community. We’ve all seen the numbers and they are pretty shameful.

No, my issues are simple.

Autismspeaks uses negative imagery in its portrayal of autism to get its donations (http://vimeo.com/20692567), rather than showing the positive. Yes, people with autism can be very challenging until you understand the condition, but to compare the condition to having a fatal disease, and portraying it as a tragic burden is just repulsive.  Compounding this is the claim of an Autismspeaks executive that they considered driving off a bridge when they found out their child had autism.  I wonder whether this would have been the same if they found out their child was gay.  Its just a different way of operating.  how hard do you think your imagery is for people who have autism. It is demoralising, disrespectful and hugely damaging to their self-respect.

This approach convinces me that under current policy your name should be FearofAutismspeaks.  It is a terrible message to send to people who may never have come into contact with autism before when their child is diagnosed.  It’s a horrific thing to be floating in the atmosphere of society: autism is a life sentence! No its not. Its just a word. Not a sentence.

The second issue is this: where are the people with autism in your company? Where is the personal experience not just of living with someone with it, but of living with it? Living it? I’m sure you are very well aware of the phrase “Nothing about us without us!”. It’s very much the central tenet of positive disability movements.  Autismspeaks doesn’t seem to have much personal experience of Autism, and as such, its difficult for any of us who are part of the actual community to accept you know what you are talking about.  Exceptionally so.  And what makes matters worse is when now, at this moment, Autismspeaks is under pressure to give answers to the ASD community, it seems to be pretending it is not happening.  In summation – Autismspeaks does not listen.

I am a sensible and rational man, and I would love to be convinced that you are working for the good of the ASD community, so I invite you to do it. Show me I am wrong. Show me you listen. Show me you are not simply peddling fear for dollars. Show me your ASD leadership who are helping guide policy with their experience of autism.

For the next seven days, I will not promote the boycottautismspeaks campaign, in hope that you can give me an answer and I can say “I was wrong,” and “I am convinced”. But if you continue with what appears to be a stonewall policy on criticism by the ASD community, then I will assume that your lack of answers are simply due to the fact you can’t argue with the truth.
Yours respectfully

The anonymous aspie


  1. A wonderfully eloquent and elegantly written post! Thank you!

    Leah Kelley

  2. Thank you so much for this.

  3. Added to https://en.wikipedia.org/wiki/Talk:Autism_Speaks/Controversy_links -- lots of other links there, if folks are curious.

  4. I think we need them to think about what they are doing

  5. My son is non-verbal. You speak very well for ASD. While we have come a long way in the understanding, we have a long way to go. Remember the "Deaf and Dumb" label? The same thing is happening with explaining the 'scale'. I have heard Professors explain, "Up here you have the high functioning who may be socially quirky, and down here are the non-verbal retarded". Their language NOT mine. My son is smart…..he just cannot speak. William Stillman helped us understand from the perspective of an Autistic person. Thank you for being so well spoken on this subject. You can do a lot of good by helping others understand. I do not want my son to be anything else. No one is as kind and truthful as he is. I would like to make it easier to communicate his needs. We are working on RPM for this. The Lovaas method of ABA failed him. We are not seeking a cure but could use more services that help him without diminishing his being.

    1. Its difficult when people won't listen, and when anything not "normal" is seen as wrong, or something to be corrected. I am always happy to help if i can, tho i'm not an expert, just an aspie. but we are what we are, and i wish you luck in your search for services to assist him.