Autism Speaks doesn’t speak for me


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this is autism

When I first saw the call to flashblog action by This is Autism in response to the very well funded organization Autism Speaks, it flitted across my vision and dissipated quickly from my mind.

Then it blipped across my radar again.

And again.

And again.

Finally I decided to see what this controversy is all about. I read the post by Austism Speaks that started this latest firestorm off. Then I read a few posts by former supporters of Autism Speaks (there are no shortage of those on the web) including this one from Carol Shay Hornung and this resignation from John Elder Robison. Both authors express very well their discomfort with Autism Speaks and what this organization is saying about living with Autism.

*I’m back now, I just had to take a moment from writing this post when my 4year old (suspected, but not yet seeking formal diagnosis) Aspie daughter climbed up into my lap. Her finger nails and finger tips are bright pink. I ask her if she just coloured her fingers with marker. She says “no” and hides her head in my chest. This is a familiar scene with this daughter. She has trouble with any kind of discomfort and her response is to hide from it. I remind her that she can tell me anything, I can handle it. She shyly pulls her head out of my chest and whispers, “marker”. I have to get her to repeat it, it’s so quietly said. “Yeah, that’s what I figured”, I answer “Well, I guess the soap is going to be really pink when we wash that off”. We then go on to discuss how we can put real nail polish on her without it ending up everywhere. After a while she is satisfied and wanders off to play with the dog.*

She still has marker on her hands. When we get to it, the handwashing may be fine and go off without a hitch. Or, it may trigger a major meltdown. I can never predict where something like that will go. I weigh the pros and cons and decide that we can wash the marker off in a little while. I’m going to finish this blog post before I take on that potential battle.

Autism Speaks appears to have a view that “normal children” shouldn’t do such things as colour their finger tips with marker (yeah, right!), or at the very least they will calmly submit to washing their art project off their hands.

Perhaps some neurotypical kids would happily accept and submit to the wishes of their parents (who want to keep the furniture clean). Perhaps not. I just don’t happen to think that life with kids will unfold in the predictable way that I have been taught to expect. I think there are many, many surprises that I will have to contend with in this lifetime as a Mama. I don’t particularly like that, but I’d rather put my energy into adapting and getting creative in response, than going into my own meltdown and temper tantrum.

And there, perhaps, is the difference between my perspective and that of Autism Speaks.

It seems to me that Autism Speaks has gone into a bit of a meltdown and temper tantrum of their own. Perhaps it is the fractal nature of life, or the theory of projection and mirroring, but as Autism Speaks out against the “evil” of the Autism “epidemic” they seem to perpetuate an evil epidemic themselves – an epidemic of wrongful thinking.

Autism does not rob anyone of their children or their future, what it does is give parents, grandparents and society the opportunity to learn, see and do things differently, and learn compassion. Yes, we as a society need to  provide support and resources to/for people and families who are dealing with Autism. However, we don’t need to demonize Autism (and those with it) in the process.

Autism Speaks does not speak for me. Nor do they speak for anyone with Autism (With John Elder Robison’s resignation there is now absolutely no person with Autism in their organization’s decision making body). And, nor do they provide the much needed services that help parents/grandparents of Autistics to cope (of their huge annual intake only 4% is allocated to services for these families).

Autism Speaks seems to speak only for people who don’t like that their life hasn’t unfolded in the way they thought/think it should. This War against Autism seems to mirror so many other wars that have come out of the United States.

I for one certainly won’t go to war with my daughter/myself/my father.

If you’ll excuse me, I’m now going to play restaurant with my 4 year old. Then we’ll wash that marker off her finger tips.