Tag Archives: DSM

more on labels and identity

So apparently some people out there think that everyone on the autism spectrum should call themselves “autistic” and that words like “aspergers” are harmful and should go away.  I’m still undecided on the whole “autistic” thing, but I do know that I don’t think the arguments for it are good ones.

There are some Aspie supremacists out there.  I’ve run into one of them on the internet.  Once.  And by the time I ran into that person, he was already re-thinking his stance.  Of course, it’s still possible that there are hoards of them out there and I just haven’t run into them yet.  In any case, one of the arguments against the word “aspergers” is that anyone who uses it is, deliberately or not, aligning themselves with these people and reinforcing their point of view.  I don’t buy it.  There are a small number of extremist feminists out there too – the ones who really are the “man-hating female supremacist” stereotype that gets bandied about.  I do not, however, think that everyone who uses the word “feminist” is trying to align themselves with the extremists, nor do I think the the extremists gain power by all the reasonable people who use the word.  In the same way, I don’t think it applies to aspergers either.

I’m just going to quote another point: “They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

I’ll be honest.  I have absolutely no idea what this point is trying to say, and as such, I really can’t refute it.  I am simply too confused to be able to do so.  I do, however, know that I tend to feel alienated when someone tries to tell me how I should identify.

One of the big arguments refers to the DSM-IV (which means the argument may be moot by now, but anyway): “The only current diagnostic difference between receiving a diagnosis of Asperger disorder or Autistic disorder is that in order to be diagnosed with Asperger disorder, an individual must have “no clinically significant general delay in language.”1 There is no other difference in diagnostic criteria”

This is something I’ve heard a lot of.  A WHOLE bleeding lot of.  I finally decided to look it up for myself, and I discovered that there are, in fact, differences beyond the language thing.  The first section, “social interaction” of Autistic Disorder is exactly the same as the first section of Asperger’s Disorder.  Identical.  However, immediately after that autism has a whole section regarding “qualitative impairments in communication” that asperger’s lacks.  It has the oft-cited optional delay or lack of spoken language, but also includes impairments in the ability to initiate or sustain a conversation, stereotyped and repetitive use of language, and a lack of spontaneous make-believe play.  None of those things are in the Asperger’s criteria.

Then there is another section, “restricted repetitive and sterotyped patterns of behavior,” that is once again the same in both criteria.

However, beyond that there are two more differences between the criteria.  Autism requires that there is some sort of delay in functioning with an onset prior to three years of age.  That alone means I likely could not be diagnosed with autism under the DSM-IV.  As far as I know, my social challenges really started to show up in kindergarten, which is definitely too old for autism.

Additionally, along with language delay being contra-indicated in Asperger’s, there must also be no clinically significant delay in the development of self-help skills, adaptive behavior, and curiosity about the environment.  So a person that had significant delays in learning to use the toilet or dress themselves would not be able to get a diagnosis of Asperger’s.

I will grant that the differences are few.  I will grant that the line can be blurry.  Nonetheless, it is simply not true to state that language delay is the only difference between the two diagnoses.

Getting back to calling it all autism, one thing I have wondered about is how those who are diagnosed with autism feel on the matter.  It has been surprisingly challenging for me to find much of anything on the topic, but I did eventually find this:

“I have a classic autism. I was nonverbal when I was young, but learned to verbalize. I do not have Asperger’s Syndrome.”

So I can say that there is at least one autistic person out there who is likely not in favor of everyone on the autism spectrum calling themselves “autistic.”

Finally, I really can’t be in favor of telling other people what to call themselves or how to identify, especially given how murky this area is.  Much as it’s uncool when a neurotypical barrels in and tells a bunch of aspies and autistics that we should really call ourselves “persons with aspergers/autism” (I plan to write more on that in the future), it’s also uncool to tell me that I don’t get to call myself an Aspie, even though I’m diagnosed with Asperger’s and that’s the word that fits me best.

That said, I am increasingly wondering how the new criteria for the DSM-V is going to impact this particular social debate.  I also really wish I could find out more about how people with “classic autism” feel or think on the matter.  As it is, I think I’m going to continue to call myself an Aspie for the time being.

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DSM 5

This has been on my list of things to write about since I started my blog, but I’m kind of intimidated to write about it.  Plus, it’s a topic that I honestly don’t really know what to think of, and I haven’t properly managed to form an opinion yet.  Also, I apologize ahead of time for the fact that this post is not going to be fully cited – I’ve been reading articles for months, but have failed to save the links and now I can’t seem to find them again.  hrmph.

So, as you may or may not know, a new version of the DSM is due to be coming out in a few months.  The entire process has been surrounded by controversy right from the start, with a large number of people unhappy with how it’s been handled, both generally and regarding specific things.  One of those specific things is the fact that a number of disorders are now going to be consolidated under the “autism spectrum disorder” umbrella, which will have one set of criteria.

Reactions have been varied, but largely negative.  Some people fear that many people will be excluded and will thus not have access to services they need (and others disagree).  Some people fear that having it all lumped together will cause those on the more severe end of the spectrum to be even more invisible than they already are.

I have a hard time figuring out where I stand on it.  Once I was diagnosed, I finally allowed myself to really start researching into Asperger’s syndrome (AS).  I learned very quickly that information about AS was often blended together with information about autism.  Shortly thereafter, I learned that the reason for this was because the line between AS and autism was blurred and confusing, and no one seemed to be entirely clear on where it was.  I have heard a number of different ideas (some say the difference is in language delay vs not, other people in whether or not there is a desire for social contact, etc) but always with the idea that at best, it’s a rough, general distinction.  I cannot directly speak for diagnoses like PDD-NOS or childhood disintegrative disorder, but I would not be surprised if the same thing holds true for them as well.  So it seems clear to me that the distinctions are flawed and as such, probably not very useful.  Plus, people have already been referring to all these diagnoses together as autism spectrum disorders (ASD), so making it official could be useful.

On the other hand, we are talking about a very broad spectrum, which contains people who are very low functioning and people who are very high functioning.  I have a hard time with the idea that one set of criteria will cover everyone.  Plus, people with different levels of functioning will obviously need different services.  I wonder how having only one diagnosis will change how services will work.  I can see the argument that lower-functioning people will have a harder time getting much-needed services, simply because the diagnosis of ASD will not indicate how severe they are.  Will there be a concept of trying to indicate where people are on the spectrum?  Will diagnoses include functional severity ratings?

Ultimately, I don’t think I can form an opinion until I see what happens.  I have always been rather bad at prognostication, so I’d rather gather more data than forecast doom and gloom based on speculation. Though I will admit, on reading over the proposed new criteria, it is rather a relief to me that I would still qualify.

And hey, look at that.  I managed to find most of my links!

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