My Photo
Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, February 18, 2006


Autism R and D

Three points converge to a head.

Point One--Awakening: I turn on my blackberry to receive an email newsletter from NAAR stating that their merger with Autism Speaks is completed, and they will together “fight the battle against autism.” Like the war on drugs and the war on Iraq, they got the President Bush’s wife to join in. It’s all sympathetic to the triumphant war hero, and many like to be just that, even at doing so at the expense of others. Even Alan Greenspan has decided to get “bullish on autism.”

Point Two -- Early A.M.: Had breakfast and went to get an overdue pedicure before a short jaunt to see grandparents next week in Florida. Hubby bought me Jasmine Lee O’Neill’s book, Through the Eyes of Aliens: A Book About Autistic People. I read while my feet are immersed in soothing warm water. I consider buying it in bulk for the October show, for my family and friends as the Autism Reader 101. I am nearly in tears at her ode “For An Autistic Child:"

To you in your world,
Locked inside yourself,
An island,
Isolated winds in your mind,
To you, locked inside beauty,
Inside anguish, inside joy,
You live
too profound to understand,
Little one curled up rocking,
Your floor your world,
Just you,
Your little expressive hands,
Like tiny little birds,
talking in flutters,
your little angry snarls
repel a monstrous outside realm,
your beloved treasures:
Diminutive faery animals
Smooth wooden beads
Dots of sunlight on your wall
Humming your songs
to calm your anxious hands,
Just you,
At one with rhythm,
Your world
only bits of those others
who come and go like currents of air,
barely ruffling your forelock,
Your face a delicate empty mask
to those who see only with eyes,
Those who don’t understand,
your world,
To me,
watching you,
I see myself,
I sing songs for you,
little one, to tell you,
You don’t have to forsake your world to be free.

I hold back the tears behind my new reading glasses, hiding my face behind the book face:

Through the Eyes of Aliens by Jasmine Lee O'Neill...should be Autism 101 Reading. Posted by Picasa

“The autistic world isn’t a dark and horrid chamber. It perhaps sometimes appears that way to outsiders. Knowledge and understanding will lessen the fear. For, as an autistic fears new or unknown people, events, places, even foods, a non-autistic may also fear a world inside another that seems incomprehensible…” (p.18)

Fear is the ogre. It is the war-monger. It lives in Presidencies, in massive organizations, and in research that seeks to ameliorate people with autism.

Point Three -- Lunchtime: Picked up Adam and we go to music class -- we haven’t been in two weeks because of how ill he has been. On the positive side, he was watching his peers and especially the teacher – he seemed to be having a good time. On the other side, he preferred to lie down and watch the ceiling in circle, and he didn’t want to be “redirected.” I felt that he was being directed so much at one point, that he wasn’t allowed the time and space to be competent. He preferred to circle and watch like a cat, and when he was ready, he pounced in. The other children were watching him. It is all too noticeable, being a parent, trying so hard to appreciate him for himself, for his autism, to appear on the surface accepting and unaffected, and watching other eyes full of judgment and wonder -- in children as young as three.

“You should not seek to change what you are, or try to do it to another. I also don’t agree with the therapists who try to prevent an autistic child from seeking refuge in her inner world. There are extroverts and introverts. If an autistic person doesn’t actively relate the way others do, so what?” (p. 21)

It all comes to a head -- P.M.: Begin writing and am feeling discombobulated --- Why or why do we have so much fear of people who are different in the world who can persuade the Laura Bush’s with words like “fight,” “battle,” and “war” and a multi-million dollar budget. I call for peace. Stop the fight against my son. Love him and accept him for all his wonderful traits. Let’s start a new Autism R&D project – Autism Respect and Dignity.


Anonymous kyra said...

oh yes, i agree whole-heartedly: autism respect and dignity. i'm not sure of your politics and i don't want to offend, but i am not at all surprised that bush gets it wrong. he swaggers everywhere, waging war, bombastic and ignorant. sensitivity and education have never been his strong suit. not even on his list of goals.

4:44 PM  
Blogger Estee Klar-Wolfond said...

No offence taken.


5:06 PM  
Blogger Terri said...

I "stumbled" here by clicking "Next Blog" and just wanted you to know I learned so much. While I have had a couple of acquaintances who have children with autism they've only talked about it occasionally. One family I met online years ago, they live in Indiana, have no money and 7 or 8 kids, one of whom has autism. I know it was their wish to have their son swim with the dolphins. I tried to help them make that happen but then young father (early 40's) had a heart attack and everything else fell to the side. I'm happy to read there are people like you, working hard to teach others about autism. Again, I learned a lot here. Thank you.

5:16 PM  
Anonymous mike stanton said...

Excellent. And so good to see "discombobulate" in print. I lknow how you feel.

6:09 PM  
Blogger Kristina Chew said...

We had a similar experience at a music class when Charlie was 3----he wouldn't touch any of the unstruments and we left early after too much moaning. But now he can do all of them, the rhythm sticks and horns and guitar, etc..

We do have to fight, but for and with peace---and, indeed, not even talk about "fighting" at all, or "war" or "weapons." No R and D for any of us in that.

9:37 AM  
Blogger Jemaleddin said...

I think "fight the battle against autism" is more like LBJ's "War on Poverty." I kept thinking: what did the poor do to deserve having war waged on them?

Lewis Black points out that in "The War on Drugs": "...we're losing to junkies!" So there's hope that in the battle against autism, autism will win. =-)

11:56 AM  

Post a Comment

Links to this post:

Create a Link

<< Home