Misconceptions re. re-classifying Asperger's in the DSMV

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I keep on having to say these, so I figured I'd just post them up so people could read them and I'd stop having to correct things every other post...

With the current ideas being kicked around for the autism spectrum:

1. Asperger's will not be dropped from the DSM altogether. It will be re-classified as part of a larger "Autism Spectrum Disorder" diagnosis.

2. If you're Asperger's now, you won't have to be re-evaluated. Anyone who is diagnosed Asperger's will simply be called "Autistic". You will not have to qualify for a diagnosis of Autistic Disorder as it is written today (though odds are you actually do) because the diagnosis for Autism Spectrum disorder will include every currently known Autism Spectrum Disorder, including PDD-NOS and Asperger's, but possibly not Rett's and CDD.

3. Yes, they're dividing it according to severity--probably mild/moderate/severe. Most Aspies will be Mild, some will be Moderate. There's also talk of including sub-threshold symptoms, not as a diagnosis but as something to note when you come in for therapy for something else.

4. If you're undiagnosed now and experiencing problems that could be due to Asperger's, you can still seek diagnosis. Your diagnosis would simply be spelled "Autism" instead of "Asperger's".

5. Your change in diagnosis does not mean you'll lose your IEP, your access to accommodations at school or work, or your eligibility to receive disability benefits, if you are eligible now.

6. No, the change is not set in stone; but it is supported by a majority and will probably be part of the next edition. The main arguments against seem to be from people who have spent time studying Asperger's specificially instead of autism in general, and believe that Asperger's is qualitiatively different from other kinds of autism.

7. The major argument to support the change is that Asperger's and HFA are too similar for Asperger's to be considered a separate disorder (most people diagnosed Asperger's can be diagnosed HFA and vice versa). Additionally, the huge PDD-NOS category points to most people on the autism spectrum simply not fitting into narrow categories like Autistic Disorder and Asperger's Disorder. To accommodate this diversity, one diagnosis would be given to all, and then a severity level.

And, my own opinion: There is no good reason why this labeling change should affect the autistic community at all. We have always been in the same rough Autism category; and we will continue to be in it whether or not they change the labels. Maybe Aspie elitists won't be happy about the change; and I can see that lots of other people think the current labeling system is just fine and doesn't need fixing; but other than that, we should adjust with very few problems.

That's good to hear.

I do hope that they use separate qualifiers for severity and functioning; I'm not entirely convinced that severity and level of functioning always correlate.

They don't, and that's something I'm worried about, too. If they don't keep the GAF scale, at the very least, there's a great danger of people either getting put into the wrong category or be stereotyped for the one they are in.

But really, I personally would not want to have severity levels at all; but rather have the overall autism category and then different sub-features that people can have one or more of. It's not something I have any say in, though.

I'm cool with a plain 'Autistic' label.

There are Aspie 'elitists'?

Are these the ones who think that NTs don't notice?

Conversely, there are those who have resented "mild" cases being classified as autism. I don't think that all of the flak from change will come from the Aspies whose label/identity is being dropped, but from those who don't think that the mild- to moderate- range of the spectrum should be called autism at all.

Of course, this all misses the point, if some current research is verified, that there just might be distinct differences of brain development, structure, and areas of cognitive and emotional abilities that differentiate Asperger's and high functioning autism. I'm not confident those are being considered in the Autism Spectrum Disorder Low/Medium/High proposal. It's like there will need to be an individualized matrix of Low/Medium/High functioning for all of the areas impacted in an individual having Autism Spectrum Disorder. Our areas of functioning are all over the place. Maybe proposed changes will be an improvement over the current status, but I can foresee DSM VI being revised to group those with similar clusters of abilities along the spectrum - a swing of the pendulum back to labels like Asperger's under the umbrella of Autism Spectrum Disorder. Kind of like where we are now but with more-well-thought-out -- and scientifically substantiated -- distinctions.

Your sub-groups would still have to overlap, though. You would have to be able to diagnose somebody as being in more than one sub-group just because any group you try to put people in, if it's got more than one trait, it's going to overlap.

Absolutely there are areas of overlap within the spectrum, just as there can be areas of overlap with other psychological and cognitive differences such as obsessive/compulsive disorder, learning disabilities, anxiety, depression, giftedness, etc. Groupings can help to clarify. Otherwise we can't see the trees for the forest.

Z

Well, lack of overlap-able groups is half the reason why the spectrum definition's so messed up now. You can be practically a textbook case of Asperger's, but if your IQ is too low, into the Autistic Disorder box you go. Or you can be diagnosable as Autism, but have more in common with Asperger's, because your traits are numerous enough. Or you can just grow out of a speech delay and nobody can tell what your diagnosis was as a kid. It's just ridiculous. The current categories don't do a thing for either autistic people or the psychology/neurology profession because you can't tell what to expect based on being told somebody's diagnosis; and you can't make a diagnosis in many cases unless you know what traits a person had as a child, and doesn't have anymore; even when you can make a diagnosis, half the time it falls in between definitions or you can't tell where it's supposed to fall, so you have to resort to yet another NOS.

I think that the mild/moderate/severe system won't do much more than what we've got now. At least it pulls the autism spectrum together like it should be; but there's still going to be so much variety within categories that professionals will be in real danger of subscribing to incorrect stereotypes if they draw any sweeping conclusions about the members of any given severity level.

Someday, diagnosis will be based on brain scans, and then it'll actually have some real meaning. For now, it's based on symptoms, and there's really no way to stop it from being a bit arbitrary.

I already refer to myself more as "Autistic" than "Aspie" nowdays, anyway. So I'm OK with this.

Thank you Callista for the great description of what is happening with the new DSM. I have been comfotable with the Asperger's label, but I have no problem with the autism label either---because Asperger's is in the autism spectrum anyway. And thanks for posting about the IEPs as I have been wondering about that with my son. In fact on his new IEP which I signed this past Friday, the IEP category is listed as "Autism." And it's good that you posted that those of us diagnosed with Asperger's will not have to undergo further diagnosis in this new DSM.

I'll quote the latest on the proposed "labels":

so if you have a pre existing diagnosis, don't you have to get re evaluated to know what category you are in?

Also, I'm not understanding these categories very well. "Less Severe" and "Moderately Severe" seem the same to me.

Yeah. Well, that's what my psychiatrist said.

Second, to me, it's referring to someone who partakes in a normal amount of social communication [compared to the other two], but has dead obvious impairments in it (you know, talking in a one-sided way, lacking eye contact and the other nonverbal cues, taking things literally, and all of the other things we all know that people with AS display in social interaction), which leads on to it affecting the person's life (significant interference or impairment). Plus, repetitive behaviours that aren't as marked and interfering with the person's life [compared to the other two].