Autism, by any other name…

DSM-IV-TR, the current DSM edition

Image via Wikipedia

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:

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:

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10 Responses to Autism, by any other name…

  1. Sharon says:

    I’m not sure how I feel about the changes. I suspect my son may have Aspergers, but his current dx is pdd-nos, which will be a moot diagnosis when the new DSM comes out. After reading so much about ASD and Aspergers and classic Autism I cant help wonder about the apparent over simplification of the new criteria.

    • I have often thought that the spectrum is better respected and addressed by acknowledging the differences as much as the similarities of those across its breadth. The new criteria do seem to favour the latter in detriment to the former. Though by separating out some of the conditions into whole other categories – completely off the spectrum so to speak – it also arguably respects the importance of the differences. I suppose this largely depends on whether the perspective is of the person being thrown into “autism” proper, or out of “autism” altogether.

  2. solodialogue says:

    I have kept my nose out of this debate currently. My son, who just turned 5 has autism. He is high functioning but definitely has social, communicative, and language delays. Cognitively, he is above average for his age. Whatever his label, he will still need services – how long remains a mystery since he is still so young.

    I can understand how emotions run high on both sides of the spectrum because of our deep emotional involvement with the issue. For now, I’m going to stay on the sidelines until there is something more concrete. (Very thoughtful and well done post, by the way!)

    • Thank you! And yes, staying on the sidelines makes sense considering how much can happen and be clarified between now and 2013. I’ll be keeping my eye on the on-going dialogue. I find the debates and attitudes quite informative as well as interesting.

  3. Darcy says:

    Overall, I agree with you. I’m with those who think Asperger’s and PDD-NOS are useless titles, that autism is one encompassing spectrum. My bone to pick with the proposed changes is the severity scale. People simply fluctuate too much for a rigid scale to be useful. Plenty of folks are Levels 0, 1, 2, and 3 in different respects.

    Anyway, as I said, I agree with you overall and echo the above comment of this being a very well done post.

    • Thanks Darcy.

      The level of severity is an interesting area – I do applaud them for trying to create a more streamlined and universal reference point for the question of severity. I think the question of individual temporal fluctuation isn’t too destructive to how they’ve set it out – people will usually take a year or more to significantly shift between the levels they propose, I think that could be adequately analysed and reflected in subsequent visits to the pediatrician (I’m not sure how often visits happen elsewhere, but for us they are annually at least).

      The levels also respond to the two core groupings of symptoms – social communication and restrictive interests / repetitive behaviours. So there is the ability there to say someone is level 1 re one aspect, but level 3 re another (for example). It remains to be seen how it will be implemented and how much it will effect services etc. All very important questions.

      (And just for those who may not be familiar with the proposed severity scale we’re mentioning here, here’s a link: http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94# )

      Thanks for the comment and your thoughts Darcy.

  4. Bill says:

    I am endowed with Asperger’s. (very obviously inherited)

    The shrinks are trying to herd cats.
    When you try to herd cattle, you have a goal to move the cattle from point A to point B, often with a specific plan for the cattle when you get to point B.
    They are trying to herd cats with no destination in mind, and no plan for what to do them once they have been herded. (Of course it would be impossible to have a single coherent plan, since there are so many different and unique types of “autism”, with many different unique causes, and unique best practices for each type.)

    I hope this will all soon be moot, that routine urine tests will screen for markers of autism phenotype gut flora, and which type of autism may be confirmed by genetic tests or brain scans and neurologists, and we will stop going to shrinks to diagnose genetic syndromes or pre-natal brain trauma syndromes.

  5. Kitty Kay says:

    What I was told by a neuropsychologist is that this makes the spectrum a little broader, not really sure what he meant. But one thing he has said is that it is very hard to place a child on a specific place on the spectrum as they may be high in one area and low in another. The term Autsim rather than Asbergers typically opens more doors for services. If this is true or not I don’t know I think it depends on the state, school district, and school. People need to remember the DSM is only a guide it is not the end all be all of psychology. We relie a lot on peer reviewed science as well to come to conclusions. Psychology has been and will always be a working science.
    I don’t see anyone stopping services that have been shown to work for a child just because of a dx change.

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