Thursday, July 20, 2006

Impressions of the ASA conference

It's taken me a week to be able to pull my thoughts together about my experience speaking at the ASA conference in Providence, RI. And it is likely these observations will only be my narrow window on the conference, as I only attended for a small part of thursday and saturday--the days my two panels were scheduled.

I have already blogged about my frustrations regarding speakers *paying* to speak, so I won't say anything more about that here.

I took part in two panels, one about being a parent 'on the spectrum', the other a writer's panel. (In my other life, I'm a poet and aspiring novelist)

The panels were modestly attended; the family one more than the writer's panel. The audiences were respectful and attentive.

I had mixed feelings about the conference itself. While I applaud the ASA for including individuals with Autism in its governance, I felt as if the organization has a split personality.

I spent some time walking around the exhibitor's area and was dismayed to see so many booths focused on quasi-scientific autism 'cures' and 'treatments'. Supplements, therapies, and hyperbaric chambers, oh my.

There was a booth by either "CAN" or "DAN" (sorry, walked past it so quickly, I didn't register which acronym it was). If the ASA is taking money from these organizations, then there is at least the tacit agreement that autism is something that needs to be 'cured' or 'defeated'.

I have very mixed feelings about the hordes of bio-medical treatments that separate desperate parents from hard-earned money for questionable scientific proof.

I want to see barriers to function, understsanding, and employement 'defeated', ignorance 'cured'.

I don't think the ASA can adequately represent Autistic voices and Autistic lives until it resolves this conflict.

Thursday, July 13, 2006

On my way to ASA

I have to admit to a large portion of ambivalence about attending and speaking at this conference. I have visions of security guards accosting me for proof of my "aspie" credentials, or parents booing me for not following a gluten and casein-free diet for my family.

Maybe I'm an outlier, but the truth is, my family life doesn't seem so out of the ordinary. My boys fight like typical siblings. I spent hours in the car ferrying them to karate, ceramics, play rehearsal, hebrew school. We have homework wars. They constantly nag me about getting cable TV and pushing back their bedtimes.

They are happy and even when I have to make unpopular decisions (no, you cannot see that PG-13 movie, or no, thet video game is too violent) they know they are loved, accepted, cherished for who they are. They know I will be their staunchest advocate *and* the one who pushes them to do their best.

There is no one who knows them better than I do. Both because I am their mother and have watched them grow and thrive from their births, and because I can see the world through their eyes. I remember the acute pain and confusion of the social world of upper elementary and junior high school. I know the feeling of being just enough out of phase with the world to make life almost unbearable. I also understand the joys of an all-consuming interest.

I try not to roll my eyes at yet another conversation about manga and anime, remembering my obsession with all things Star Wars in my pre-teen and early teen years. Our newspaper ran a cartoon serial of the original movie and I dutifully clipped the comic strip from the paper every day and taped it up behind my closet door. It was especially important for me to get to the paper after we had returned from vacation so I could collect the whole weeks' strips before the papers were thrown out.

When P was small, our lives revolved around getting home in time to see "Thomas the Tank Engine". Thank goodness for VCRs with timers.

Maybe this would have seemed odd to me if I hadn't had my clear memories of needing sameness and predictability in my early life. Even before "AS" vocabulary entered our lives, we knew that P thrived on routine. Other babies could miss a nap time. Mine could not. No exceptions. Sorry.

This is the life I have. There is no second guessing or wishing it away. Is there sadness? Sometimes. The pain of watching P's friends abandon him in 4th and 5th grade re-awakened feelings of anziety and depression I though I had moved past. There are many times when P and I are at loggerheads--when our rigidity clashes head on and I turn into 'harpy-mom'. Not something I'm proud of. I know I need more time and personal space than most other moms. If I get overloaded, I can't parent effectively. My partner/spouse/main man provides me balance. His love and acceptance makes it easier to get through the hard days.

This is the life I have and this is the life I love.

Because I have accepted my boys, I have opened the door to accepting myself.

Warts and all.

(Figurative warts, not literal ones.)

Saturday, July 01, 2006

Points of agreement?

I have been following autism blogs for some time now, and I'm terribly disheartened by the degree of hostility and deep devisions between constituencies.

It seems as if there are definite 'armed camps'. Cure/not cure, NTs/ACs, High functioning/low functioning. I'm sure there are more dichotomies I could come up with, but you get the idea.

Here's the strange thing--many of us live in *more* than one 'camp', or constituency. I'm a parent of a child on the spectrum. I'm also an "aspie" myself. I'm also a medical professional. (disclaimer--I don't work with autism--I'm a physical therapist) So at different times, I may wear different 'hats'.

But regardless of what role I take at any given time, here's what I believe:

"Function" is a matter of perspective. Someone using a wheelchair in an Escher house would likely be 'low functioning'. There is no clear line between what 'high' and 'low' functioning *is* in the world of the autism spectrum. And even within the same individual, level of function may change depending on outside stressors, physical health, and coping resources.

If 'cure' means obliteration of what makes my brain function in the way it does, no thank you. What I want is to decrease barriers to function and improve coping ability in an often chaotic world.

What is 'disabling' is not necessarily the *autism* but the host of secondary impairments related to fitting a round peg in a square hole.

In fact, I wish we could move the debate along the lines of the World Health Organization's terminology:

Impairment--any loss or abnormality of psychological, physiological, or anatomical structure or function.

Disability--any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap--a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents that individual from fullfilling a role that is normal, depending on age, sex, social and cultural factors.

I'm all for decreasing disability and helping to mitigate impairments. Anxiety? Sure--take it. Depression--nope, don't want any. Face-blindness and difficulty reading non-verbal cues? Love to learn better ways of getting around that.

My autistic-thinking brain? Don't you dare mess with that. My ability to see patterns and hyperfocus is *not* disabling in my life. My sensory processing can get in the way at the grocery store, but my poetry is richer because of it. Special interests? Well, in my world, it's a good thing for a physical therapist to be intensely preoccupied with anatomy and kinesiology.

So what *can* we all agree on?

Maybe for starters, that decreasing disability by minimizing secondary impairments is a good thing. I can stand behind that and not feel as if my self-hood is being devalued.

Perhaps individuals would be willing to ask a different question.

Instead of:
"Will this treatment/medication/therapy/supplement *cure* autism?"

"Will this treatment/medication/therapy/supplement help improve my/my loved one's quality of life?"

Yeah--that works for me. What about you?