Monday, March 26, 2012

Accepting Autism

The other day I met a parent who is going through the initial diagnosis of autism

I found myself recommending the usual bibles of new parenting in Autism

You know .. "Son Rise" .. "Let me hear your voice" .. "The boy who loved windows"etc

There are thousands  amazing  autism books - why are these handful so popular?

I think the answer is that these are the cure books

These books  use the war metaphor

The enemy - autism

The warrior - you

The  victory - cure

These stories -the cure stories -have become the legend in autism land

The thing is ....I have never met a recovered child

I have met plenty of children who have made lots of progress though

Why is that not good enough?

I wish I could find something to say to a new parent that is realistic

That the cure conversation will fill them with energy in the beginning and drain away their joy with guilt and questioning themselves in a few years

That is about progress

I wish I could say these things and still fill them with optimism and hope(for there is so much to be hopeful about )

I wish our conversation would be all about helping our children and not about curing them of autism

"Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures."

Autism's Parent Trap , Cammie McGovern New York Times, 2006 

I write on the Specialism website of the amazing Danette and Tiffani on this topic here 


Anonymous said...

well said. thank you.

Magnificent Minds said...

Thank you for saying this so eloquently and without judgement. I couldn't agree more; I see progress everyday, but I don't use the word "cure". After all, that insinuates that something is "wrong" and not just..."different..".

Deb said...

Absolutely wonderful. Yes, yes, yes!! Thank you...

Anonymous said...

Awesome blog! I completely agree with everything you wrote. Thank you .

Anonymous said...

Go to the blog "Hidden Recovery." Ashley's son recovered and she details all the interventions, including both ABA and biomed interventions, that were successful. I personally have met several recovered children so they are out there.

Floortime Lite Mama said...

Thanks so much Kelly Deb < Magnificent Minds, outrunningthestorm and Di
@ Anon - that is really fabulous for Ashley's son and I am so happy for them
I have not met any recovered child ever.
Though I have met plenty of children who have made significant progress
The point I was making is that I know so many parents who have also tried the biomed ABA and everything - and they have not recovered. The recovery stories while energizing at the beginning of the journey can make a lot of parents feel like failure in the middle of it.

Barbara said...

Your words are both helpful and comforting, K. Recommending this post to others.


I've tagged you for a meme (don't hate me!) Go here to learn more about me and decide whether you want to share also:

jazzygal said...

Totally agree.

xx Jazzy

Yuji said...

You raise some interesting points. When my son was diagnosed, it devastated my wife. I think the recovery stories helped her at that point, but you are right that she felt discouraged every time one of the new treatments we tried had only a small benefit instead of "recovery." I'm not sure, though, what is the best approach to take with parents of newly diagnosed kids. Very thought provoking article!

AT said...

@ Anon, I feel it it time to differentiate between classical autism and others like PDD-NOS etc. perhaps DSM-V will be able to achieve that ........
I am very glad that Ashley's (Hidden Recovery) son diagnosed with PDD-NOS is cured.

Jos said...

I think life would be infinitely harder if the thought of a cure was so close yet always out of reach.

Is it strange to feel thankful that I know that there is no cure for what we deal with, it just is. I can concentrate on loving her and giving her all the opportunities to meet her potential.

I'll admit to always feeling guilt that her trauma happened while I was pregnant. It's not my fault per se, but I will *always* feel responsible.

I guess all parents of kids with special needs have their weights to bear.

Li said...

This is so great. FWIW, I would've found your message very comforting when I first got the diagnosis. I hated all of the recovery books. I hated the message that you had to sacrifice everything you found enjoyable and fulfilling in order to be a good parent. Besides, I never bought the recovery narratives. I always thought they were too tidy and forced.

We got our son into early intervention and he's done extremely well. But we certainly didn't do biomed or 24/7 at home therapy. I think we just got lucky, frankly. And I hate the idea of parents feeling despair because they did everything but their kids didn't recover. Plus the poor kids, always failing to meet their parents' expectations. Imagine what it must feel like, knowing your parents see you as a personal failure.

I've always said that if I meet a parent with a new diagnosis, I'm sending them here. Your blog is the best balance of hope combined with realistic expectations and clarity regarding the nature of autism.

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