Thursday, January 8, 2009

Joyful Autism

The inimitable Barbara at Therextras pointed me in the direction of a new (to me) blog last week, and I've been mulling over one of the posts I read there. The blog is Both Hands and a Flashlight, the blogger is Tim (who co-blogs with his wife Mary, sound like a familiar set-up?) and the post is "Happy Autism"?

Here's how it starts:
I recently ran across the term ‘happy autism’ in a book I was reading (which, of course, I’ve now forgotten the title of). Essentially, the author used this term to describe his autistic child, who clearly 1) met all three components of the so-called ‘autism triad’, and 2) was generally very happy and content most of the time.

That immediately rang a bell with me, and I do love bell-ringing! Joy doesn't generally fit the prevailing child-with-autism stereotype, an image that perhaps entails a blank-faced, unresponsive kiddo either rocking silently in a corner or engaging in disruptive, self-injurious behavior. Not that she doesn't get wrapped up in her stimmy activities, and we've had some effort to keep her safe from herself too at times! However, on the whole, she's a sunny child with an irresistable laugh, and we end up having to explain the shortcomings of the stereotype to people who wonder why she has the diagnosis she does.

There's actually something dangerously seductive about the term "happy autism" for me, as sweetly as it seems to fit my daughter. The trouble is the wish to find a way to differentiate her from those other kids with autism. You know, the stereotypical ones. See, she's not like them. She's happy. She's in a different part of the hierarchy, y'know?


Tim points to other modifiers that do something similar (high-functioning, mild, moderate, severe), even though they're not part of the official diagnostic criteria.

In our informal search to categorize and quantify, we end up creating new boxes, new artificial separations, each of which can bring its own damaging value-judgments.

I know that we need language in which to talk about diagnoses and conditions and experiences. I don't envy the team that's working on the new definition of autism for the upcoming edition of the Diagnostic & Statistical Manual (DSM V). The new definition will surely draw the formal boxes in a different manner than they are formally drawn now. I hope that they will get closer to getting it right. If we knew what right was.

Meanwhile, we're back to the tension between the myth of fingerprints (they're all the same!) and the n of 1 (every last one is unique). So I've got a new term for my original, broke-the-mold kiddo. It's all hers, uses her name even!

"Joy"ful autism.

(Seriously, if you haven't done so yet, go read Tim's post. He's good.)


jess said...

you know, i've wrestled with this kind of thing 20 ways to sunday.

at a recent meeting with our neuro-psych, he threw out pdd-nos rather than autistic disorder. it caught my attention (duh), so i mentioned it, but rather casually. the dr (who i swear can read my very soul) kind of smirked.

what? i asked him. he said that he was surpirised that i was so casual about it. 'many parents get very excited about the possibility of a different diagnosis, he explained. they see pdd-nos as a 'downgrade' of sorts.

i looked at matt. i looked at my shoes. and the words just came. 'i don't really care what you call it. one way or the other, i still call her kendall.

our kids are so incredibly unique. these boxes - they never seem to fit completely. and these kids - well, they are so very much more than their autism, no matter what flavor they have or what we choose to call it.

and what better to call your beautiful girl than 'JOY'?

Anonymous said...

JoyMama you are linked in yesterday's post by me, too. (I had to blame someone for not passing on those nice awards.)

"20 ways to sunday" - like that, gotta remember it for later use. So, ARatK, if I do a 'ditto jess'
would that alieve your concern'?

What I'd really like to say is 'ditto the whole post'. Or, I agree.

I would not want to be on that diagnostic definitiona team either, but thank goodness someone is willing to do the work. As in WORK.

Behavior is based in the nervous system (brain primarily but really the whole system - as in sensory receptors). And the nervous system is genetically determined but modified by experience. (Like jess said, duh.)

That being my mindset, I'm still thinking that Autism is really a catch-all term for a group of behaviors.

Autism is not defined by behaviors called 'happy' but 'happy' is an individual human characteristic. Another Barbara has a perfect companion post on this:


JoyMama said...

Jess - lovely story. It is good to find the company of like-minded folks!

BRatK - thank you for the mention at Therextras. I did see the post just before I did this one, and I won't say that social economy didn't play a role in "she linked to my blog again so maybe I oughtta include a link to hers..." And thank you for the link to the other Barbara. A fascinating take indeed from the other side, where happiness is stereotypically viewed as PART of their particular diagnosis instead of counter to it!

Anonymous said...

Wow. Very thought-provoking. That's the thing, isn't it? Autism is so many different things in so many different households and families. It is incredibly hard to define something that bears so many faces.

mama edge said...

I just looked up Joy in the dictionary, and I found your daughter's picture! Pure JOY!

datri said...

Well, Kayla certainly falls under the category of "Joyful Autism"! I keep forgetting to post her "Flamenco stim". If that's not joyful, I don't know what is.

Interesting about all the "labels". Kayla has "moderate autism" and Laurie has "PDD-NOS". Must say that Laurie has got to be one of the most depressed seven year olds ever. Really, you shouldn't want to die at age seven. I'll take joyful "moderate autism" over depressed "PDD-NOS" any day.

Anonymous said...

Great, thought-provoking post! I love the JOYful autism term. How sweet it is that Joy fits her name so perfectly.

Anonymous said...

Hi JoyMama!

I'm flattered! Back when we had no traffic, it kinda felt like an echo chamber in our little cul-de-sac of the blogosphere. Now I love it that our communities are overlapping and we can have these conversations between blogs (blogoversations?) on things like this!

I keep thinking about how we phrase things and agree that everywhere you try to step in this name game it seems you either put yourself in danger of slipping down the slope or you just plain step in something. But I still think we can come up with a better vocabulary than what's used in most public conversations about autism these days.

I should do a post simply on parsing the language of titles of books about autism. There's lots of fertile ground there. I was at Barnes and Noble today; the special needs kids section has book titles that tend to fry my brain.

Great point on the DSM-V. I keep meaning to finish a post on that too. I *really* don't envy them the task they have in front of them, but dear God I hope they get it right. Since they only revise it about every 15 years, we're stuck with whatever they come up with. The bad news is that it's about 99% unlikely that sensory processing disorder will make it in as its own diagnosis, but maybe a miracle occurred since I read that.

BTW - Like the "n of 1" concept. Plus it appeals to my inner geek.

I know this sounds like a weird 'project', but there's a point to it I'll be blogging about much further down the road. I seriously am looking for words to pair with 'autism' that have positive meaning but don't potentially exclude a bunch of people too. (like 'happy autism' likely would) This doesn't sound like a hard [must. not. say. 'puzzle'.], but it's deceptive in that regard.

I wonder if that's because with all the stereotypes and apocalyptic language people tend to have for autism, we either have to reinvent or reclaim (or both) the words and wider vocabulary we need to send a positive message.

Maybe we could just call it Joy-tism! :-)

Thanks again for all the compliments! I think I blushed, though.

danette said...

Great post! My sons are happy most of the time too. Not to say they don't have their moments... but mostly they are cheerful guys and I'm glad because I love, love, love to hear them laugh, it is a "joyful" sound!

JoyMama said...

Tim - the "blogoversation" I've experienced since starting Elvis Sightings has blown me away. I wasn't sure anyone who didn't already know me would ever visit, but I had the good luck to be discovered and "introduced" by Maddy at Whitterer on Autism, just a couple weeks into my blogging enterprise, and suddenly regular readers started showing up. That's a big part of why I like to give credit where credit is due when I find thought-provoking blogging, though I don't have nearly Maddie's kind of traffic! The interconnectedness of the blogosphere holds so much power.

I'll look forward to continuing the conversation about autism-words. Be warned though when it comes to commenting over here -- several regular readers have been known to give one another chaff about making lengthy comments... :-)

JoyMama said...

Datri -- oo, you gotta post the flamenco stim! I'm sorry to hear that Laurie has such a hard time of it though. That sounds very rough for a seven-year-old, or for anybody.

Lonestar - trying to remember if we've met yet -- if not, welcome, and if so, welcome again! :-)

Mimzy said...

I hate that a stereotypical child with Autism is one who sits rocking in a corner and doesn't want to communicate. They are happy, they have fun, they WANT to communicate! No child with Autism doesn't want to communicate, they want/need to communicate differently and crave for someone to meet them where THEY are!