Autism Vox

The Difference a Diagnosis Makes

by Kristina Chew, PhD on November 11th, 2006

Diagnostic confusion is not uncommon in child psychiatric disorders, with “pervasive developmental disorder” as well as “compulsive tendencies” and oppositional defiant disorder” offered as possibilities for the same child according to What’s Wrong With a Child? Psychiatrists Often Disagree, an article in today’s New York Times.

The uncertainty children and their parents in the article encounter in figuring out “what’s wrong” is a familiar story to more than a few Autismland parents. Notes the New York Times article:

…there are also deep uncertainties in the field itself. Psychiatrists have no blood tests or brain scans to diagnose mental disorders. They have to make judgments, based on interviews and checklists of symptoms. And unlike most adults, young children are often unable or unwilling to talk about their symptoms, leaving doctors to rely on observation and information from parents and teachers.

Children can develop so fast that what looks like attention deficit disorder in the fall may look like anxiety or nothing at all in the summer. And the field is fiercely divided over some fundamental questions, most notably about bipolar disorder, a disease classically defined by moods that zigzag between periods of exuberance or increased energy and despair. Some experts say that bipolar disorder is being overdiagnosed, but others say it is too often missed.

My friend MothersVox over at Autism’s Edges is not unfamiliar with this kind of diagnostic confusions. (This has not at all been the case for our son Charlie, who has often been given the dubious distinction of being pronounced “classically autistic.”)

It would be well to note that psychiatric diagnosis is an imprecise science, and that autism itself only became an official diagnosis with the appearance of the DSM-III in 1980. In the DSM-III, the American Psychiatric Assosiciation no longer “lumped autism together with schizophrenia as a diagnosis, instead calling it a pervasive developmental disorder” (p. 110), as Roy Richard Grinker writes in Unstrange Minds: Remapping the World of Autism (forthcoming January 2007). Grinker’s fifth chapter, “The Rise of Diagnosis,” carefully tells the story not only of how autism became a part of the DSM-III, but also of how the DSM-III itself came into being and it is not exactly the orderly and “scientific” process one might imagine.

To make the DSM-III, the top psychiatrists got together for brainstorming sessions. Robert Spitzer, the coordinator, frantically took notes while his colleagues presented their views and counterviews, interrupting each other continually. These discussions were punctuated by expressions of frustration about the mere idea of having to construct a document based on scientific knowledge that could serve as a guide for every situation……. The DSM-III was supposed to appear scientific even though the discipline did not yet have a solid scientific foundation. [my emphases] (p. 117)

Grinker’s sixth chapter, “Autism by the Book,” further notes “how murky the diagnostic waters of autism have become” (p. 141)—-and this seems to be the case for more than a few child psychiatric disorders as well as for autism. A recent discussion on Autism Vox about whether autism and Asperger’s are the same or different is further testament to those “murky diagnostic waters.”

In the New York Times article, Camille Evan’s son is described as having received a half-dozen different diagnoses over a series of years, after which she concluded that his “silences and learning difficulties” were best explained as an autism spectrum disorder. It is not a “perfect” label, she notes, but suits her son better than “developmental delay” and does not entail “aggressive treatment with drugs” as might follow a diagnosis of ADHD or bipolar disorder.

“Most important for me,” Ms. Evans said, “the diagnosis gives him access to other things, like speech therapy, occupational therapy and attention from a neurologist. And for now it seems to be moving him in the right direction.”

An autism diagnosis has given Evans’ son access to the educational and therapeutic services that can teach him how to cope with communication issues and his learning difficulties.

Some may see the diagnostic confusion that led to an autism diagnosis for Evans’ son as the most appropriate explanation for his needs and, too, as the best way to provide him with the services he needs, as further evidence that autism has become a sort of “trendy diagnosis” to get one’s badly behaving child, as Katie Grant wrote in a much-commented-upon article on May 14th in Some ‘autistic’ children aren’t ill, they’re just badly behaved. Consider instead Grinker’s position on the autism epidemic:

The prevalence of autism today is a virtue, maybe even a prize. (p. 170)

As I wrote in The Not-so Ominous Increase in Autism,

If there is an increase in autism, it need not simply be seen as “ominous,” but as the result of us understanding what autism is better; of us having more precise epidemiological instruments to count the number of autism diagnoses; of better services existing to teach autistic children.

Similarly, the rise in diagnoses of child psychiatric disorders is a sign of our times, of a greater acceptance and understanding about human diversity and neurological difference. And perhaps the current confusion over what a child “has”—a pervasive developmental disorder, bipolar disorder, Asperger’s, ADHD—-is also a positive sign—a “virtue, maybe even a prize”—that we are learning to grapple with and seek to know about the varieties of being human, rather than simply labeling these “abnormal,” “weird” or “wrong.”

What we don’t know yet, can help us.

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