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.
[Note: I also recently came across the term 'autism triad', which is defined nicely by Wikipedia as the three characteristic signs of autism: impairments in social interaction; impairments in communication; and restricted interests and repetitive behavior.]
I have mixed feelings about the term ‘happy autism’, though. On the one hand, it does describe our son very well. He’s definitely autistic, and he’s quite happy, content, and peaceful most of the time.
I think the general public on average assumes that our children are always screaming, breaking things, freaking out over little details, or whatever, and that our lives as parents are miserable black holes devoid of hope. Of course, under a variety of conditions, our children can have a very hard time and our days can sometimes go straight down the toilet, but the reality of our lives is usually quite different than the way things are portrayed in the media and in film and TV. It’s good to have words that help counteract those stereotypes.
On the other hand, the term implies that those who don’t have ‘happy autism’ are unhappy, miserable, or whatever the opposite of that term might be. It’s like with everything that involves putting adjectives and modifiers in front of ‘autism’. For example, we try to categorize it as high-functioning, mild, moderate, or severe, though there are nearly no diagnostic criteria that describe what any of this actually means in real-life terms. We even go back and forth about what is actually ‘on the spectrum’ and what isn’t. And on and on from there.
There’s also the debate about whether we should describe our children as “children with autism” or “autistic children”. Dissecting what implications both of those have would take at least a whole other post.
My point here for now is in trying to figure out whether many of these adjectives are even useful. As one who is primarily a writer, I believe the way we say things is important and that words have the power to affect opinions, perspectives, and our fundamental values about life.
For me ‘autism’ is a word that helps us get a foothold into understanding how the J-Man thinks and feels and communicates and processes everything he experiences during the day. But, always and forever, he is uniquely the J-Man. He has been diagnosed with autism and sensory processing disorder and likely apraxia and other things as well, but he is far, far, far greater than the sum of these parts.
Whatever terminology we use, it should pass one basic test. It should empower our children and anyone with autism to say without hesitation, “This is who I am, and I am proud to be me.”
Posts that hopefully are similar:
- …because you never know what their story is.
- Happy World Autism Awareness Day!
- What do parents of autistic kids want?
- Learning How Not to Say “I’m Sorry.”
- What’s Your Autistic Toddler Like Now? (Part 1)
- Be Aware – For Families and Friends
- We’re All Afraid
{ 7 comments… read them below or add one }
I’m surprised to see who is online blog-commenting on New Year’s Eve. Thought I’d be the only one; that my remarks on an ‘old’ Vox post would likely go unnoticed. I was wrong, eh?
I just wanted to thank you for the encouragement – “everyone can commit to some time every week to create a helpful resource on some other topic for other parents” – to keep blogging. “To help with the practical, day-to-day needs of parents, sharing resources, providing positive support” – what I’m hoping to do.
You offered an excellent – clear – description of process: “getting the really hardcore experts, medical geeks, etc. to do the kind of analysis that needs to be done at that level, and then hand that down to people who know enough to understand what they are saying but start wording it in language more average people can understand, and then those folks hand it off to people who are more the communications experts who can then share all of this with the public in a format accessible to all.”
All the same, a bit overwhelming, would you agree?
Nice blog you have here. Congrats on your child-to-be-born.
See ya around Vox.
And so grows an online community… Barbara invited me over here, and she recommended well. Nice blog you got here!
“Happy autism” has a certain appeal, and it fits my 4-year-old Joy quite well. She has the best smile and laugh!
As you say, though, it implies unfortunate things about the people it doesn’t fit. Language is slippery stuff, isn’t it?!
I couldn’t have blogged it better myself.
@Barbara – I had a little free time New Year’s Eve evening and got kind of caught up in that comment thread. It’s not like we go anywhere around here for New Year’s Eve! I think now I need to detox from football and snack food.
Trying to provide more and better resources to parents is my goal for 2009. As a matter of fact, plans are already well in the works. We’re bringing in an outside expert to join the fun, too! I’m hesitant to elaborate much or put out a target date for making anything public yet, but I’m very excited about it.
On the whole medical front, I’m frankly content to let all that go on without me. It always turns into a flame war that just ends up burning up energy I need for other things. The whole ‘debate’ seems to descend farther into chaos by the day, and my minimal, theoretically positive contributions to that wouldn’t be justified by all the emotional energy it would take for me to participate. And personally I think a lot of other parents should follow that same path.
I honestly read Vox and a number of similar blogs much less now than I used to. It just seems like so much of the ‘autism Web’ has turned into what’s almost now a circular firing squad about ’causes’ and ‘cures’ and related issues, regardless of what side of that you fall on. But I think she’s more aware of that larger problem than most. It’s no one person’s fault or anything; in my opinion, we all carry some measure of responsibility for it. The whole thing just makes me sad, though. And while I don’t know what it is, I know there has to be a better way to deal with this process.
I think I’m best suited for working with parents on specific educational, behavioral, and related therapies along with providing positive support and messages and practical information about parenting younger autistic children. If people judge me for my various, non-expert opinions about medical issues – or my lack of them – or want to criticize me for walking away from that and doing something else, so be it. So much is being neglected, and I feel led to do something about that.
Everything about this can prove overwhelming. I think that’s part of the merit badge we get for parenting.
If we each do our part, though, I think we can make a big difference.
Thanks again!
@JoyMama – Glad you came to visit, and thanks for your kind words!
I’m a self-professed language geek, so the slipperiness of language fascinates me. Words can carry great power and set the tone for countless discussions and debates, so we should choose them carefully and thoughtfully.
I think this kind of reflection on language makes us more sensitive to the needs of others and more aware of how we can build up the community. This is emotionally charged stuff, though, but dealing with those issues is how we grow stronger. I also hope we can be constructive with each other as we refine the process because it’s certainly an imperfect one.
Speaking of things well-chosen, it sounds like Joy is an absolutely perfect name for her!
@Debby – Thanks for the compliment!
(There’s a phrase of encouragement we use around here (home) – from my Hubby’s former career. I’m not sure if I leave this phrase all by itself if it will be taken well.)
“I’m hesitant to elaborate much or put out a target date for making anything public yet”.
Drive on!
“The whole ‘debate’ …..that same path.” I agree. ‘Cept to say that I know enough human physiology to bear some responsibility for commenting on what is unfounded in that arena. Not so much an ‘aha’ but recently I feel suddenly surprised at how little most people understand the human body. Really leaves them prey to the snake oil dealers.
I have a positive review of the new site Kristina is writing for (not that Vox wasn’t good). I think she has ventured into the realm of “the communications experts who can then share all of this with the public in a format accessible to all.” I’m hopeful she has.
“I think I’m best suited for…” I doubt you will go wrong if you follow your gut (no promo for DAN! intended).
I agree that the ripple-effect of good work is great, albeit often unknown to the pebble at the bottom of the pond.
Sincere best wishes for the New Year to you and your family.
I’ll be back.
Barbara, I’ve been almost constantly pondering all this lately, and I feel more and more confident and excited about the kinds of things I plan to stick my flag in and take on this year. I hope everyone sits down with themselves and does some sort of reflection like that. I declare 2009 the year of positive change!
And, yes I will actually tell people what we’re working on one of these days. It’s too much like vaporware at this point, so I’d rather talk about it when there’s something to look at. But I will say that I’m feeling pretty giddy about it.
I also think we should declare 2009 the year we send anyone who yells to timeout for a day for each offense. That’s getting old.
Thanks again! Hope you had a great holiday.