Sunday, November 8, 2009

DSM-V to Unify Autism Spectrum, Emphasize Autism "Severity"

Sarah and Sadderbutwisergirl have both posted about this article in last Monday's New York Times, which discusses the American Psychiatric Association's possible abandonment of Asperger syndrome as a separate category in the upcoming DSM-V.

The last time I blogged about autism in the DSM-V, almost a year ago, the Neurodevelopmental Disorders Work Group was still gathering evidence, asking questions and trying to determine its priorities. Among the questions they asked in their November 2008 report were:

1) How to describe the "spectrum" of disorders now known as ASD (e.g., how many domains will define the disorder);
...
5) Whether Asperger's disorder is the same as "high-functioning autism";
...
7) How to include considerations of severity and impairment in diagnosis (currently defined as "qualitative impairments") ...
By the time of their April 2009 report, the work group seems to have found answers to these questions.

The Workgroup is considering a change in DSM-V that would replace the Pervasive Developmental Disorder (PDD) category with the title "Autism Spectrum Disorders" (ASD). The change would utilize a single diagnosis for the disorders currently entitled: Autism, PDD-NOS and Asperger disorder. Several factors support making this change:
  • A single spectrum better reflects the pathology and symptoms.
  • Separation of ASD from typical development is reliable and valid, while separation of disorders within the spectrum is variable and inconsistent.
  • Individuals with autism, PDD-NOS or Asperger disorder often are diagnosed by severity, rather than unique, separate criteria defining the three diagnoses.
The Times article quotes several work-group members on their reasoning behind the proposed merger of autism-spectrum subcategories:

"Nobody has been able to show consistent differences between what clinicians diagnose as Asperger's syndrome and what they diagnose as mild autistic disorder," said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual.

"Asperger's means a lot of different things to different people," Dr. Lord said. "It's confusing and not terribly useful."

...

Dr. Susan E. Swedo, a senior investigator at the National Institute of Mental Health who heads the diagnostic manual group working on autism, acknowledges the difficulty of describing such a variable disorder. Dr. Swedo said the plan was to define autism by two core elements -- impaired social communication and repetitive behaviors or fixated interests -- and to score each of these elements for severity.

The trick is to "walk the tightrope of truth," Dr. Swedo said, between providing clear, easily used diagnostic guidance to clinicians and capturing the individual variation that is relevant to treatment. "People say that in autism, everybody is a snowflake," she said. "It's the perfect analogy."

The proposed elimination of autism subtypes comes at the very moment when research suggests the disorder may have scores of varieties. Investigators have already identified more than a dozen gene patterns associated with autism, but Dr. Lord, of Michigan, said the genetic markers "don't seem to map at all into what people currently call Asperger's or P.D.D."

Nor have many of these genes been linked to distinct sets of symptoms. Until research can identify reliable biological markers for autism subtypes, Dr. Lord and other experts say, it is better to have no subtypes than the wrong ones.

I do think it's a step in the right direction to collapse all these categories --- autism, Asperger's and PDD-NOS (which was always just a catchall, "Everything Else" category anyway) --- into a single, more flexible one. The criteria for all the different existing categories are really arbitrary, having more to do with one's developmental history (i.e., at what age did you learn to talk?) than with one's current capabilities, and I think the current organization of the PDDs is more a historical artifact than it is logically or empirically based.

However, I have problems with the concept of autism severity they're proposing.

The two domains they propose as being diagnostically relevant, and which will form the basis of a given autistic person's "severity" rating --- social communication and repetitive behavior/fixated interests --- don't seem to have a lot to say about an autistic person's actual strengths and weaknesses. While I can see a communication impairment causing problems in someone's life, and a diagnosis of autism helping that person get the right therapies, services and accommodations they need to minimize those problems, I don't think that unusual social interactions, repetitive behaviors or eccentric choices of hobbies pose many problems for autistic people in themselves. Such "pathological" pursuits can actually be highly successful coping strategies, helping to defuse the intense, chronic stress and anxiety many of us feel. They might also be avenues through which we can develop, or exercise, a talent or skill.

I see no mention in the work group's discussion of what constitutes "severe" autism of any of the sensory, motor, cognitive, emotional or executive-functioning difficulties that can pose serious problems for everyday functioning, self-care and independent-living skill acquisition by autistic people. While communication impairment (on both the sending and receiving ends!) and social agnosia can be severely disabling as well, I still think these criteria are more a list of traits that mark us as Other than they are an accurate gauge of our mental well-being.

That bothers me because, by focusing on such external, superficial characteristics, the new criteria ignore the reasons for our behaviors --- and thus, the question of whether a given behavior is helpful, harmful or neutral --- to consider only the extent to which they differ from "normal" behaviors. Thus, an autistic person who can pass for neurotypical is automatically assumed to be better off than one who can't.

To the extent that simple discrimination accounts for many (but not all) of the problems autistic people face in life, that might well be true. But to the extent that there are sometimes severe impairments associated with autism, that may or may not correlate with one's ability to pass, I think this single-minded focus on appearances does autistic people no favors.

Michelle Dawson critiqued these proposed changes in June, and came to similar conclusions:
The assumption that having more obvious autistic traits and abilities is bad ("more severe") has resulted in prejudicial judgments in the literature. An autistic boy (who has accomplished more as a child and young adult than most people, autistic or otherwise) with a full-scale IQ of more than 100 and a strong performance on numerous tests is judged to be "low-functioning," because he is so obviously atypical. That is, he is judged to be very "severely" autistic (Bonneh et al., 2008; Belmonte et al., 2009), and this must solely be a bad thing. In Aldred et al. (2004), preschool autistic children are falsely judged to be "low-functioning" or "high-functioning" solely on the basis of presumed autism "severity" falsely drawn from ADOS scores. It is being falsely and prejudicially assumed that an autistic whose traits and abilities are more obvious must function poorly.

The proposed DSM-V changes will enhance societal prejudices against autistic traits and abilities. These prejudices already serve to prevent autistics whose traits and abilities are more obvious from being considered able to learn, to communicate, to make decisions about our lives, to walk around freely, to be employed, etc. Under the proposed DSM-V changes, autistics who are highly and obviously atypical would be even more harshly judged, without there being anything approaching a sufficient empirical rationale for this. Autistics whose communication and social interaction is highly atypical, or who most strongly pursue their focused abilities and interests (something which has widely been acknowledged leads to good outcomes, but this has largely not interested researchers; Howlin, 2005), will now be at risk of being regarded as "most severe." This is at a time when the term "severe autism" is popularly equated with low expectations, hopelessness, dread and horror.
Dawson goes on to point out that "severe autism" is commonly invoked to justify abuses committed in the name of therapy. I think this is an excellent point, and well worth considering in a society where autistic people (as well as many other people with developmental disabilities or mental illnesses) are at such risk for abuse.

5 comments:

Stephanie Lynn Keil said...

I'm pretty sure that "autism severity" is independent of a person's intellectual abilities. I have high intellectual abilities but when I read about people with Asperger's Syndrome or those whose autism is less severe but who also might not have the same intellectual abilities as myself I see that the two aren't correlated.

All people with autism are so different that individualized treatment is needed to help a person the best. For example, I can drive while many people I've read about with HFA/AS cannot. Yet, these people usually have friends, much better social skills than I do, better social awareness and better communication skills. My most disabled area has always been social/communication. I suppose with others it may be sensory/motor issues (which would impair driving abilities), repetitive behavior, etc.

So, I'll have to drive everyone around while they do all the social/communication "stuff." Ha ha.

Maggie said...

As a neurotypical (at least mostly) who has a couple of friends with ASD diagnoses, I sure hope you've sent your comments to the NY Times, and a copy to the by-lined author of the piece as well.

Maybe even to the DSM-V work group?

AnneC said...

Personally I have thought for a while now that the thing that would make most sense would be to identify people as "autistic" (if they're autistic, of course) but not add any other clinical qualifiers to that. Instead, knowing the person was autistic would just help indicate some possible directions to go in as far as understanding them, etc.

It is obvious that autistic people vary as far as how actually impaired we are, and in what areas, and that things like "how autistic we look" or what our IQ score is don't really indicate reliably what kind of life we can potentially have or exactly what supports we might need.

You really do have to (as Stephanie notes) look at people on a very individual basis and figure out what they need based on that. I have a relative with the same DX as me (Asperger's) and even though we have a fair bit in common (including having been in both special-ed and "gifted" programs), we're definitely not the same.

(The driving example is a good one -- I can't drive, and I am sure this is due to something about how my brain works, but I would never suggest that a primary feature of autism is a lack of driving ability. It's just part of how it manifests in me and some others. My cousin can drive, as can Joel Smith, and Temple Grandin, and a number of other autistic spectrum people I know of.

That's just an example illustrating how complicated autism can be -- you have a skill that some people don't have "because they're autistic", but that other people might actually end up being uncannily good at, "because they're autistic"! And neither person with or without that skill is "more autistic" or "less autistic" for having or not having it, they're just "differently optimized" from one another.

At least that's how I see it. And I think that because autism can "work that way", that's part of what gets people so confused, because they're used to thinking of disabilities as being very specific and likely to hinder the same activities for everyone with a particular designation. But autism isn't quite like that. I'd hazard a guess that autism is a kind of "atypical optimization" of the brain, and what's uniquely "autistic" isn't what gets optimized for, but the fact of unusual optimization happening in the first place. Which is why, when you have people with savant skills, it's not always the same exact skill -- and if people's skills don't all match exactly, you wouldn't have any reason to suspect their precise skill-impairments would either.)

As far as the DSM revision goes in this regard: I do think "merging" the categories makes some kind of sense. It is really confusing the way it is now, and there's a lot of subjectivity that goes on in assigning people to categories. And as far as "severity" goes, I can see what they're trying to do there, but I can see all kinds of ways in which it could go bad.

If you consider autism to be characterized by the cognitive/perceptual tendencies common to autistic people (e.g., the stuff that tends to result in unusual ways of looking at things, unusual movement patterns, etc.) you don't really gain much by saying that the stronger these tendencies are, the more "severely autistic" they are.

There are, after all, people who present as highly unusual and obviously atypical who are less impaired at daily living stuff than some people who look more "normal" but who have *more* difficulties.

I sometimes think what is happening is that people are confusing "severely autistic" with "severely [globally] impaired", when from a scientific standpoint it may not make the most sense to assume those two are correlated. It doesn't seem like it would be very useful or information-carrying to just make "autistic" another word meaning "generally impaired in everything".

Stephanie Lynn Keil said...

"I sometimes think what is happening is that people are confusing "severely autistic" with "severely [globally] impaired", when from a scientific standpoint it may not make the most sense to assume those two are correlated."

I agree. "Severely autistic" is usually used to describe those who also have fairly significant intellectual disabilities and thus they are "globally impaired," as you say. But I believe that the real problem is not the autism but the intellectual disability.

I've read about intelligent people with severe autism symptoms (including myself). I had people get angry at me when I said I had "severe autism." But I'm not "non-verbal" so according to them I was a liar. But I spent time in institutions, have no friends, can't hold a job, receive SSI, self-mutilated, paced for 16 hours a day...you couldn't tell the difference between me and a "low-functioning" person except I could talk (although I am very quiet) and I can "prove" my intelligence. I am much, much more "normal" now than what I used to be, though.

Whether or not "low-functioning" people are intellectually disabled or are unable to "prove" their intelligence is obviously something that needs to be researched. I was told I was mildly retarded and had a low-IQ (at 11 it was 96 but when I was younger it was even lower; I was in special-ed and diagnosed with learning disabilities); I was told I would never go to college and would be lucky if I graduated from high school. But now I am earning my B.A. in Fine Arts and Humanities (at a mostly online college) and am planning to pursue my MFA and/or MA (at a mostly online college).

So...I don't really know what to think about all of this. Each person is different is all I can think of!

Tera said...

I'm also glad that they're making autism into a single category, and share your concerns about the proposed "severity" dimension. I think there's far too much shorthand in diagnostics anyway, that may make it easier for professionals to categorize people but doesn't make it easier for people to get the help they need.

I'd love to see a system like Stephanie and AnneC mention, that focuses on a person's strengths, weakenesses and needs. I've had evaluations that do just that, and they are my favorite. (They were done by neurologists and neuropsychologists, and required many, many hours of intensive testing). My very favorite one doesn't diagnose me with anything at all--the team had no idea what to diagnose me with--but just said: "Tera is good at ___, has problems with ___ and would be helped by __." The problem with these kinds of evaluations, aside from taking a very long time and costing a lot of money, is that they are many pages long and my teachers didn't read them.

Similar to autism, my diagnosis (nonverbal learning disability, or NLD) is a syndrome with a lot of different pieces that can be at different levels of severity in any individaul person. (There's a motor skill piece, and a social skill piece, and a math piece, and an organizational piece, and a sensory integration piece, and a "visual-spatial" piece, which is a problematic term in itself--
visual skills and spatial skills are two very broad categories of skills that interact a lot, but are not the same thing at all).

And I've read people try to assign severity or (gack!) "functioning level" to it by singling out one of these pieces. And which piece they single out has a lot to do with their agenda to begin with. (If they want to say that NLD is related to the autism spectru, they pick the social piece, for instance). Or they'll say things like "High-functioning people with NLD can go to college," when some of us have a skillset that makes us successful (or at least "mostly normal-looking") in school and much less so outside of it.