http://www.psychologytoday.com/blog/dsm ... tes-autism
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There has been a heated controversy about the DSM-5 proposal to redefine autism. Will its dramatic changes in definition result in dramatic changes in who gets diagnosed and will this cause a big reduction in the overall rate of autism? The DSM-5 folks claim their changes will have minimal impact. My prediction has been that they will have a major impact.:
Dr. Lynn Waterhouse, an autism researcher for more than thirty years, has weighed in on the issue in her recently published book, Rethinking Autism: Variation and Complexity. Dr. Waterhouse believes the DSM-5 criteria are seriously flawed and will reduce the number of diagnoses. She sent this email:
" (...) Other (admittedly smaller) studies tell a radically different story- one that should inspire a lot more caution in the DSM-5 group than it has. Mattila found only 46% of those given a DSM-IV diagnosis met criteria for DSM-5 ASD. Taheri and Perry found only 63% of DSM-IV patients met DSM-5 criteria. And McPartland found only 60% diagnosed with ASD under DSM-IV would get a DSM-5 ASD diagnosis.
These studies all suggest that, contrary to Dr Lord's assertion, DSM-5 will likely have a radical impact on autism diagnosis and qualification for school and mental health services.
The DSM-5 criteria define ASD with two core symptoms: (1) global impairment in social communication and social interaction not accounted for by developmental delay; and, (2) a restricted, repetitive pattern of behavior, interests, or activities.
Worley and Matson compared 78 children given a DSM-5 ASD diagnosis with 52 children who met DSM-IV but not DSM-5 ASD criteria. Surprisingly, they found no significant differences in overall autism symptoms between the two groups. Mandy found that 64 of 66 individuals with a DSM-IV diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) would be excluded from a DSM-5 ASD diagnosis because none of the 64 met the second DSM-5 criteria—restricted repetitive behaviors, interests, or activities—even though all 64 had global impairment in social communication and social interaction. Mayes, Black and Tierney found only 27% of children with PDDNOS were identified as having ASD with the DSM-5 criteria.
These and other independent research groups have reported that DSM-5 ASD criteria will significantly reduce the number of ASD diagnoses. Their findings counter Dr. Lord's claim that DSM-5 ASD criteria will not change the number of people diagnosed. Because nearly all of those excluded from a DSM-5 diagnosis have serious developmental social interaction impairment, they cannot be correctly diagnosed by any of the other DSM-5 childhood disorders, such as Social Communication Disorder or Intellectual Developmental Disorder. These children will need services that will be more difficult to obtain without a DSM-5 diagnosis. Unfortunately, the DSM-5 group has chosen to simply ignore data that don't conform with its beliefs."
And a comment from a reader:
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The argument made in this article seems to presuppose a desire on the part of the APA to maintain similar levels of diagnosis in combination with clearer, less "fungible" criteria. In fact, though I can't believe that this is the case.
My strong impression is that the changes in criteria reflect a negative response to the high number of children found to have enough symptoms to warrant an Aspergers or PDD-NOS diagnosis. "Too many" children have evidently fallen into categories that were expected to describe only a small number of youngsters whose symptoms left them challenged but without an official diagnostic category.
If I am correct, then the actual DESIRE behind the changes is to solidify the autism spectrum diagnosis by developing clearer, less elastic boundaries. This would, of course, lessen the number of people with the diagnosis.
Meanwhile, we still have a very large cohort of people with social, communication, and speech issues who, for example, don't have perseverative behaviors or significant sensory challenges. Their issues are very real, but are not the same as those which will be defined under the ASD name.
Presumably (though not definitely!) those kids would lose the ASD diagnosis in order to gain a more appropriate diagnosis -- such as social communication disorder, social anxiety, or some combination of other diagnoses. Or not.
In my opinion, while there is now a social "understanding" of autism that has been helpful (or hurtful depending upon your point of view), there is nothing sacred about the term. In fact, from our point of view as parents, it can be very confusing. Our son, with a PDD-NOS diagnosis, has very few of the "usual" ASD symptoms -- and thus is often taught and/or accommodated incorrectly.
Yes, he has speech delays (not included in the new criteria) but no, he has no sensory challenges (which ARE included in the new criteria). Yes, he has difficulty understanding nonverbal communication, but no - he does not perseverate on a single area of interest. He doesn't need the extraordinarily structured, sensorily careful settings provided to people with what will soon be "real" ASD -- but he sure as heck DOES need a small, interactive, multimodal learning situation.
In other words, our son doesn't need the level of restriction provided to kids with "autism," and could thrive as an apprentice in a largely hands-on field. I'm guessing he's not alone: many of the kids in autism settings are receiving either too much or the wrong type of education and vocational training! Staying with the ASD diagnosis wouldn't do him or anyone else in his circumstances any favors.
23 Dec 2012, 7:37 pm
