There are a wide range of responses to the proposed changes to the DSM criteria for autism (due to come into effect in 2013). Some view it positively for the exact same reason that others view it negatively (“Aspergers will just become autism, this is great news / a terrible tragedy..”). There are a lot of concerns about what this will mean for access to government support and school services. There are also worries about identity; specifically as to whether any particular child will still “be” autistic under the new criteria.
Worrying about access to services is natural, but there’s not much point to it at this stage. Most services respond to level of need, not just the name of the diagnosis. This is particularly true of autism which is a spectrum disorder – some need extreme levels of help, others need and want none – and services respond to those differences. Either way, service providers will have to figure out how to respond to the changes, and until we get the chance to comment on any proposed service changes to the proposed DSM changes, it’s all very premature and quite possibly un-necessary stress (for all we know, and as some have suggested, this will actually broaden the level of support for more people on the spectrum.)
I have been particularly intrigued by the emotional responses of some people to the idea that their child will no longer be called “autistic” (or “Aspergers”). Now they will fit under some other category of developmentally delayed, or intellectually disabled, or a number of the other new terminologies that appear to be created (or altered) by the proposed changes. Some complain that this is a conspiracy to kick the lowest functioning out of the disorder’s name, others that is removes the specialness of keeping the name “Aspergers” somewhat separate from the term “autism.”
Me, I don’t really mind. Call my son whatever he is, if he is no longer autistic under the new criteria (which looks unlikely, his autism is rather “classic”), then that’s fine with me. It’s just a word, with a lot of emotional and historical baggage, but still a word, and one that hasn’t existed for particularly long in human history either. As long as my son’s still recognised as having some special needs – which he does and always will – I don’t care if the title is “tiddlywinks syndrome.” Mayhaps it turns out he’s actually some condition I’d never heard of before, or a whole new one. I will learn all about it the same way I had to learn all about autism. Maybe it will give me new insights and understandings of what’s really going on with him; that would be fantastic.
I didn’t think he was autistic when he was an infant. Finding out he was autistic for sure when he was three, gave me some answers, but a heck of a lot of questions too that remain unanswered, of most importance for a long time was: What “made” him autistic? Regardless of what made him this way, there is no known cure, and it’s highly questionable whether there ever will be. At the end of the day (and the start of each day), the fact is I have this child, with these challenges, and the way we deal with him each day responds to those challenges – regardless of what title sits at the top of that list of challenges (whether that’s “tiddlywinks,” “autism” or “Aspergers”).
Is there benefit to knowing it’s “autism” (currently so-called)? Well of course there is. It helps me understand his mind and his actions. Knowing it was autism was a short-cut to figuring out what might and does help him. But there are an ever-growing number of treatments and therapies connected to the name “autism” which also do not (and some that simply cannot) help an autistic child. So you still have to be a smart parent that sifts through the rubbish. You also still have to specifically tailor any worthwhile and effective therapy, to your specific child: To their specific challenges and the severity of those challenges. Even amongst the more useful therapies, there is variance in how they are practiced from one city or country to the next.
Which is all to say, the word “autism” points you towards the gate of the correct amusement park, but doesn’t tell you which rides to get on, or where the “exit” is located (or whether you should and ever could exit). It opens up a world – a community even – but there are no promises the other people taking the ride along-side you think you belong there too or agree with you about whether this is a good or sucky amusement park.
Changing what the term “autism” refers to, affects the relevance of past studies and research and books and so many other things, but this is not a new problem. The term has changed before, more than once (particularly widened rather than narrowed), and though such changes do create a lot of confusion and misconceptions (such as autism numbers mysteriously skyrocketing), change in and of itself here is not an evil.
And this is coming from a woman who has a particularly rigid personality – hating change – according to the broad autism phenotype test.
Maybe I’m all Pollyannerish here, but it just seems to me that a fair chunk of the up-roar and anger about shifting labels, is a bit “the end of the world is nigh” when really the sun is just setting yet again. Maybe as more information comes out and I get to read more reactions, my own opinions will shift in kind. But for now, it seems to me, that autism by any other name, is just whatever autism is now… by another name.
Here’s a link to the actual proposed changes.
A couple of useful news stories about the changes, both touch on some of the issues I address in my post:
- “Revised psychiatry manual targets autism..” (CNN, Feb 11, 2010.)
- “Aspergers Officially Placed Inside Autism Spectrum.” (npr, Feb 10, 2010.)
And here’s a selection of some interesting posts on the topic, illustrating a range of responses and attitudes towards the changes. It’s worth reading the comments on the posts too:
- “Proposed new autism criteria…” by The Autism Crisis (Feb 10th, 2010).
- “Who will be autistic in 2013?..” by Lisa Jo Rudy at about.com (May 27th 2011).
- “Low Functioning Autistic Persons Remain Invisible..” by Facing Autism in New Brunswick (May 15th 2011).
- and “Proposed Revisions to Autism Diagnosis..” by stark raving mad mommy (Jan 28th 2011), which is a great post, but extra fun because it gives you giggles too. We could always do with more giggles.