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);By the time of their April 2009 report, the work group seems to have found answers to these questions.
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") ...
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:The Times article quotes several work-group members on their reasoning behind the proposed merger of autism-spectrum subcategories:
- 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.
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.
"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.
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.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.
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.