I’ve been asked why I do not support Autism Speaks. Although I feel this has already been expressed by writers much better than myself, I will give you my version of why I boycott Autism Speaks.
I will probably make this a living document and update it occasionally, as I remember more things or new information comes to light. Although it feels like I have about 30 reasons to reject Autism Speaks, once I start writing I can only remember 5 or 6, so I will have to come back often to fill in the gaps.
Hate Speech
Autism Speaks’ marketing is designed to create a sense of fear and panic in the population. This drives more donations and allows AS to continue their agenda to eliminating autism.
How does this affect me personally? I am autistic. I don’t want to see autism eliminated. Yes, I do have challenges that some days are almost unbearable, but I also see many benefits to being autistic and don’t want to be ‘cured’.
To this, the response is always, “Well well about the autistics who will never be able to care for themselves?” There are plenty of allistic people who will never be able to care for themselves, and a whole lot of them don’t even have a disability to use as an excuse. They are just incompetent at being grownups. So, I disagree that ability to care for oneself is a good measurement of whether one needs to be ‘cured’ of their neurology.
Rejecting their version of research does not mean we don’t want to help those who are ‘severely autistic’. First of all, what is severely autistic. Those who are severely autistic usually have a co-morbid that is the severe part. So is it really fair to say they are severely autistic?
In A Call to Action, Suzanne Wright misleadingly lumps all autistics into her statistics when talking about all the people who can not feed, bathe or clothe themselves, when in fact the number of autistics who need that level of support is relatively low. When many of us complained on social media about this the response was’you’re not the ones we are talkign about, and yet we are, because we were included in that number. We are counted as the 3million Americans who can not take care of themselves, even though many of us do take care of ourselves.
From John Elder Robinson’s letter of resignation.
I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. 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.
and
Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
Nothing About Us, Without Us
Judge Rotenberg Center
Pseudo-Science, Anti-Vax
Additional Reading
New Autism Speaks Masterpost (Updated 6/20/14)
The Caffeinated Autistic
Noted Self-Advocate Cuts Ties With Autism Speaks
Michelle Diament, Nov 14, 2013, Disability Scoop
I resign my roles at Autism Speaks
John Elder Robinson, Nov 13, 2013
http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html
Why Autism Speaks Doesn’t Speak For Me
Emily Willingham, Nov 13,2013
http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/
Autism Speaks to Washington – A Call to Action
Suzanne Wright, Nov 11,2013
https://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action
Georgetown, Say No To Autism Speaks
Autistic Hoya, July 1, 2012
http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
Videos
Autism Every Day
https://www.youtube.com/watch?v=qcNPTL7XKes