Monday, November 18, 2013

‘This is Autism’ Flashblog: What Autism Is (to Me)

Written by and originally published at S. R. Salas

“This is Autism” Flashblog

Last Monday, Autism Speaks told the world that autism is:
 . . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children
. . .  a national emergency
If that’s not what autism is to you, join us on Monday November 18th for the “This is Autism”flashblog.

[ The following is my contribution to the 'This is Autism' Flashblog...]

THIS is Autism…?

A little over 5 years ago when I learned my son, Bas, was Autistic (he was the first of us to be diagnosed), I began a search for information on autism. First stop: Autism Speaks, of course, as it was the only organization I’d ever heard of. Although Bas wasn’t formally diagnosed until 7, we were informally aware by age 5. We did not participate in early intervention programs nor did we put him in traditional therapies (ST, OT, PT), hence the ‘late’ diagnosis. We just let him be a kid, accommodated his needs and supported his development according to his time-table.
I never feared for my son when he was 3 (or 4, 5, 6, 7…) and not speaking. I didn’t fear for him when I was told the extent of his developmental delays or textbook deficits (we had always focused on his skills and abilities, just like we did for our other 2 kids). And…
I never feared for my son when I learned he was Autistic.

Selling Snake Oil

The day I visited the Autism Speaks (AS) website was the most scared I’ve ever been in my life. They didn’t make me fear autism - well, for about 60 seconds they did, but luckily I rallied quickly. The more I read, the more fear I felt, and it wasn’t autism that frightened me. I was afraid of this colossal organization that would speak of human beings in such a derogatory way. Scarier still was a society that would allow an organization to speak this way about other human beings. And not only allow it, but advertise it and
Support it monetarily

THIS (hate) Cannot Be Autism

Autism Speaks, their mission, their words - venomous ooze. I left their website knowing I could not look to them for support or guidance. I left their website feeling they considered Autistic people unworthy and less. I left that day a changed person, an informed person. Not informed about autism, most definitely not, but informed about the tactics of ignorance and fear. Informed that with enough money an organization such as Autism Speaks could openly spew poison about a group of people because it hates what they are.
So what is the difference between Autism Speaks and a hate group?
They speak of prevention and cures, not of acceptance. Isn’t preventing a group of people from existing, merely because one deems them not acceptable, hate? I believe it is - and that is something that every single one of us, concerned with disability rights and human rights, should be deeply disturbed by. Personally, I’m thankful everyday that my instincts and sensibilities served me correctly (and immediately) in realizing Autism Speaks for what it really is:  A money-hungry, fear-mongering goliath that preys on Autistic people and their families.
I hadn’t been back to the AS site in some time, that is until recently when several respected Activists and Allies began calling out Autism Speaks and their horrific ‘Call to Action.’ What I had always believed of AS was confirmed in their latest ‘advocacy’ debacle, which you can read about here.

Thank You Autism Speaks  (kidding, right??)

No, I’m not kidding. I have one thing to thank Autism Speaks for, and that is this: When I visited the AS website that day all those years ago, I left an empowered person. I realized on that day, I wasted 20 minutes of my life reading of an organization’s ignorance and fear projected on a people because of their neurology. I wasted 20 minutes of my life reading of their hate of a people because they deviated from the ‘societal norm’ and because they had disabilities.
I wasted 20 minutes (MAX) learning what autism wasn’t.
I look back on that day and realize it was one of the strongest motivating factors in my journey towards advocacy and activism. You can’t ask for a better motivator from others than their ignorance and unwillingness to listen to the one group of people they are suppose to be working with.
NONE of that was autism.
Autism Speaks does NOT speak for me, my children or my friends.

THIS is Autism

If you want to learn about autism, ask Autistic people. If you want to learn about autism (and Disability Rights) from organizations truly advocating for, and working to ensure the rights of Autistic people, then here are a few sites I highly recommend:
  • ASAN (Autistic Self-Advocacy Network)
  • AWN (Autism Women’s Network)
  • Ollibean

And THIS is Autism

It’s impossible for me to put into one post what autism really is to me, and to my family and friends. I am an Autistic person. I have Autistic children. I have Autistic friends. Everything we experience: feelings, emotions, social interaction, relationships, work, school, our environments, etc… is experienced autistic-ly, the way we’ve experienced everything since birth. So, what is autism really?
For us it’s everyday life.
But I thought that was a bit vague. I spent so much time at the beginning of this post telling you what autism wasn’t that I thought I should leave you with a little something more. So I decided to summarize it and say that, to me, autism IS:
Parenthood • Sisterhood • Brotherhood • Family • Friends • Partners • Navigators • Love •ALLY • Arguments • Masking • Laughter • Tears • Stimming • Fun • Work • Success • Failure • Happiness • Overstimulation • Assistive Technology • Play • Anger • Love of water • Presumption of Competence • Disability • Education • Self-Determination • Sensory Integration • Scripting • Rest • Insomnia • Sleep • Support • Meltdowns • Compassion • Inclusion • Misunderstandings • Accommodations • Acceptance…  All of these things and so much more.
Autism is not what we have, Autistic is what we are. We cannot be cured, and the Autistics I know don’t want to be. We live the list above to varying degrees. It’s not a list solely of the good things, and it’s not a list of all the difficulties. It’s a list comprised of a little of each - it’s about everyday life, good and bad. It’s probably easiest to say that for me, autism is both an everyday AND extraordinary part of…


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