Autism Spectrum disorders in the new upcoming DSM-V

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I read somewhere that Lorna Wing, who introduced the broader psychiatric community to the writings of Dr. Asperger, didn't like that it was then used as a separate "arbitrary" Asperger's diagnosis. She was arguing for more understanding that severe autism is just one end of a spectrum, and that there were people out there that needed assistance, but still had good language skills, etc.

Asplanet, the "Autism Heart" may be different mindedness, but the cause of that difference is the wiring and chemical balance of our brains - and the brain is so complex that I wonder how soon all of the different categories will be sorted out. It's almost as if the people rewriting the DSM need a list of ASD traits and manifestations that can be changed and reviewed with the immediacy of something like Wikipedia.

Z

From the comments made here on Wrong Planet by so many adults living with with Autism Spectrum Disorders...where are the services for us adults that we should be entitled to?

You can get a disability pension if you can't work due to the ASD; granted, it's kinda hard to get such in the US. You can also get allowances with schooling (post-secondary). You can also get residential housing due to the ASD (i.e., group homes).

That's three of the big ones.

This is possible the most informative article about in depth issues related to our understanding of AS/autism that I've ever seen. I need time to go through it all before I post more, but I am really encouraged to see so many of the issues I have taken with the way we think about AS/autism, especially diagnoses, brought up in this article.

It's interesting how one group wants to add BAP to it (i.e., an Autism-type personality that's not "disabling" to the extent of the disorders):

I hope that doesn't mean that "LFA" and "HFA" will become valid diagnostic categories (they are not right now). If that happens, people like me are screwed.

Group homes aren't a service, they're a kind of housing arrangement usually combined with a kind of institutional power structure. The beneficial parts of the services that come with them can exist equally well in group homes, larger institutions, people's own homes, etc. (Nothing good about them is specific to group living, and all intensities of services can exist in all settings.) I would think those services, rather than the form of housing they take place in, are the third in that "three of the big ones".

I receive what are considered very intensive services, in my own apartment. Despite the fact that they're technically classified as "residential" services. Basically I have help with the many tasks of daily living that I can't do. (And that I starved and lived in filth for some time because of my inability to do them, and also was given skills training that did not help.)

The more consistent cognitive finding is not that at all -- but rather specific patterns of strengths in subtests (not "verbal" or "performance" -- more specific thn that) being different in each one. Although somehow to me, it seems almost circular that they say this since AS is picked out mainly because of having specific aspects of verbal skills that they are stronger at than other autistic people generally are.

What are these daily things that you can't do? I'm not trying to challenge you as there are things I can think of that could pose a real problem - I'm just curious.

Oh, and I still haven't gotten through the whole article, but like many of you, I really hope that they would consider at the very least proposing an alternate name for Asperger's if not discarding the name altogether. It really does seem cruel and unusual to label socially awkward kids with such a name, with all due respect to Dr. Asperger and the work and advocacy he did.

It doesn't seem that it'll be HFA and LFA, rather it may just be like the old DSM-III in regards to "Full-Disorder" and "Residual-Disorder", where those who improved have the latter in adulthood. Or, it may just be ASD [and ASDNOS]. It also speaks of adding a level of overall functioning clause and criterion to it, which is a good thing.

They also are big on keeping PDD-NOS (called ASDNOS), which makes sense, as there's always atypical cases.

I told you so.

It is still going to be a hash, but not as big as a hash as before.

I disagree with the NOS thing. It works on the assumption that ‘regular’ ASD is well define, which it isn't. It is spectral. That is the point.

More like... can't do enough of them, consistently enough, without help, to avoid very dangerous situations.

I don't know how to list them all. (That's related to some cognitive problems that also cause trouble with daily living stuff.)

I hate to do this, because it is somewhat alien to how I think, but I am just going to paste some things from one of the tests I was given (where a staff person was asked to rate my ability to do various things and frequency of doing them):

So the ten skill areas they measured are communication, functional academics, self-direction, health and safety, social skills, leisure skills, self-care, home living, community use, and work. All of these are not in terms of how much you could theoretically do as a one-shot deal, nor how much you can do divorced from the real world, but they are about how much you can actually apply on a regular basis in your everyday life to get your basic needs met.

They have a rating system going from 1 to 19 for each subscore. 10 is average. I got between 1 and 3, even for areas I am otherwise good at, because (for instance) I can be good at academics, but in the real world if I am in a store trying to count change and otherwise apply them in a real-world environment, then I have trouble (so that's what they mean by "functional" academics). I found my communication score overly low, but it was because they mostly measured aspects of it I'm not good at.

My 'general adaptive composite' is therefore 47. GAC is meant to be similar to IQ scores, with 100 as the average, standard deviation of, I think, 10 or 15. On the charts they show, 40-44 is the lowest tier they measure, and 47 is in the next tier up.

It's unfortunately easier for me to just cut and paste information about the test and the subscales and my scores, rather than to explain in detail what I have problems doing.

Basically though the underlying thing is that I have trouble coordinating between what I think, what I perceive, and what my body does, except in specific areas. This is made more extreme by a movement disorder I have that some autistic people get, which I've always had at least a little of, but became far more prominent throughout puberty. With that comes a lack of the stamina that used to make it possible for me to temporarily brute-force my way through at least some skills I had trouble with. So anything I have trouble with is going to be a combination of autism and physical impairments and my environment.

Which in practical terms means that for just about everything, I either need assistance starting it, assistance keeping me on track during it, assistance understanding it, assistance triggering the right actions to do it, or assistance in the form of just plain doing it for me, depending on the situation and time and the thing that needs to be done.

Maybe I can come up with a list sometime but that is something I have trouble doing on my own, in itself, unless my brain's already in gear for it. I'll get back to you if that happens. I'm sorry for writing this post the way I wrote it but I have trouble remembering everything all at once, I remember it in pieces and mostly from specific perspectives in specific situations rather than knowing all the overarching terms for everything.

Level of functioning clause is a bad thing and against the actual science, they don't even know what it means so they shouldn't be including it. (And I don't think I'm that 'atypical' in my unevenness there, in fact it seems almost the norm.)

Okay, I found this post, which describes in detail what things were like between moving out on my own and getting services. I am more able to do some things, and less able to do others, since I wrote that. Please note also that I did not write it so people would feel bad for me, nor because I felt bad for myself, I wrote it because it was factual information that I thought was important. I also wrote this, while very pissed off at someone for implying that autistic people's communication skills mean that we have no trouble with daily living stuff. I don't scream, head-bang, or do anything violent as much as I did back then (especially I lack the violence, and my environment has changed enough that it doesn't trigger screaming as much), but otherwise it's pretty similar, and all of those are things that a person assisting me needs to do. (Trying really hard just means I'll get one and a half important things done, at most, for a short burst before I hit shutdown. Definitely not a willpower issue, in fact I considered it one for a long time and gaining willpower did not help me.) Hopefully those are more informative than me quoting an assessment tool.

I don't think pointing out how someone adapts to society by looking at their outcome is poor science, as it's quantifying the effects of the symptoms and behaviours. If for example, someone has on their diagnostic sheet, 'can't do such and such, needs help, ...' this is better for the individual in getting the help they need (they have professional backing). Not everyone with Autism is affected in the same ways, and adding some basic information on what someone can or can't do is in the best interest of the person with it.

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That is not an exact science, and you certainly can't sum that up in a label.