Autism Vox

The ‘head-spinning heterogeneity’ of the autism spectrum

by Kristina Chew, PhD on November 24th, 2006

The latest installment of UPI’s Ped Med series of articles on autism emphasizes “autism’s head-spinning heterogeneity” and highlights the “extreme variability” of autism spectrum disorders—-on there being an “innate” form of autism versus a “regressive” form. Making so much of the varieties of autism suggests that there are different kinds or types of autism, rather than an autism spectrum which includes those who are “severely autistic” as well as those individuals with Asperger’s who might once have been termed “quirky” instead of “ASD.”

Ped Med: Surveys, studies peek at autism shifts its focus from vaccines and mercury as potential causes for autism to review research that considers, in the words of UC Davis School of Medicine and Medical Center professor and M.I.N.D. Institute research director David Amaral, that autism is a “‘multiple causal disorder.’” Lidia Wasowicz describes three research studies:

1. The Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP), in which the Centers for Disease Control and Prevention’s aim is to “monitor changes in the rate of the disorder over time”; the study began in metropolitan Atlanta and is now being conducted in other areas.
2. The Autism Phenome Project which (according to the M.I.N.D. Institute’s website) is the “largest and most comprehensive assessment of children with autism ever undertaken” and “aims to distinguish subgroups, or phenotypes, of autism based on thorough biomedical and behavioral analyses of affected children.”
3. The Childhood Autism Risks From Genetics and the Environment (CHARGE) study, which, by studying 2,000 children with “differing patterns of development,” aims to characterize cases of autism “into more homogenous subgroups to determine whether particular genes or environmental exposures are associated with certain subtypes of this condition.” Wasowicz notes that CHARGE in particular aims to understand what causes “[underlie] the innate form of the disorder” and which result in the “regressive kind.”

Wasowicz quotes Amaral as saying that “[t]he best guess is that the regressive form is 20 percent to 30 percent, whereas 70 percent perhaps is not” and that

“The evidence we know from the field is virtually anything you look at is only happening in a fraction of the kids with autism….. So, 30 percent of kids with autism have seizures, but 70 percent don’t. A certain percentage of children have severe gastrointestinal problems, but a certain percentage don’t.”

The purpose of the Autism Phenome Project is, again in the words of Amaral, to develop “‘targeted treatments for a specific ‘type’ of autism as early as possible so children can reach their fullest potential.’” The project, indeed, promises nothing less than “to change the way autism is defined, diagnosed and treated,” and thereby to be ultimately to provide parents with a treatment protocol tailor-made to the particular physiological and biomedical needs of each autistic child, a kind of “Individualized Medical Plan.”

The research studies described in the Ped Med article bring to mind an often-uttered phrase in autism circles: “If you’ve met one child with autism, you’ve met one child with autism.” Certainly, a college student with Asperger’s syndrome has skills and abilities far different from those of my “classically autistic” son Charlie. Aside from the goal of being able more efficiently to developed “Individual Medical Plans” for autistic children, I wonder at the motivation in dividing up autism into more than a few, and even so many, different types (the debate about the meaning of “cure” and autism as presented by Alison Singer and Michael J. Carley in their “articles of understanding” would suggest that there is something very different about a “severely autistic” non-verbal child and an adult with Asperger’s).

I have come to appreciate the notion of an autism spectrum precisely because it suggests that there are certain core aspects of “autism”—-for instance, the familiar triad of “communicative and social impairments and behavioral traits”—-and that there is something that connects a child with PDD-NOS who is mainstreamed to an adult with Asperger’s to a non-verbal autistic child. Parents can find themselves and their children puzzlingly segregated based on whether or not a child is “hfa or lfa.” Charlie having always struggled to speak and also being far “behind” his grade level in academic skills, I have more than a few times found him ranked “lfa” and (more euphemistically) as “not having those skills yet”; just recently, a friend mentioned to me that another mother had referred to her own non-verbal autistic son as the most “hfa” in his classroom, far ahead of the “lfa” students, among whom she grouped my friend’s son. Even as we learn more and more about the varieties of autism, perhaps it would be well to consider what is common all across the spectrum of types of autism.

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POSTED IN: Asperger's Syndrome, Autism Organizations, Diagnosis, Environment, Genetics, Health, Medicine, Neuroscience, Psychiatry, Science, Treatment, Vaccines