Who Defines Disability? The DSM V and Autism: 1-23-12

Who Defines Disability: The New York Times last week published two articles back to back regarding the controversy in the medical and special needs communities over the revamping of the Autism Spectrum diagnoses including Asperger’s Syndrome and Pervasive Developmental Disorder NOS (“not otherwise specified”) for the 2013 publication of the DSM V also known as the Diagnostic And Statistical Manuel Of Mental Disorders. This is a large volume produced by the American Psychiatric Association and is the bible that guides the medical and mental health community in establishing parameters for the diagnostic categories that determine insurance coverage, treatment protocols and special education categories. The concern is that by refining Autism diagnoses, those with the milder forms such as Asperger’s and PDD-NOS will no longer qualify for treatments that have been deemed essential for their development. The fear is that services such as speech and occupational therapy, neuropsychological assessments and social skills training covered by insurance companies or provided by public school special education departments would no longer be available to children who now qualify under the current DSM IV designations. This is scary business for many families and touches upon issues that make raising a special needs child riddled with fear and feelings of powerlessness.

Spared For Now: Our daughter is not one of those with an Autism Spectrum diagnosis. She falls into the amorphous category of cognitive disability, neurological impairment or the stigmatizing and hateful Mild Mental Retardation, yes that word, (DSM V may use the diagnostic category Intellectual Disability in its place) because her I.Q. meets those requirements, though I prefer Dr. Michael Powers’ description that she is in fact an Artichoke. That is why years ago when her scores came in, it was clear that when she aged out of our school district at twenty-one, she would qualify for life-long adult services, as long as we lined up all our ducks before her eighteen birthday. Ironic indeed. “You never know what to wish for.” Nope.

Mon Dieu: Over the decades as we fumbled along the special needs highway toe-to-toe, heel-to-heel with families whose kids were each unique in strengths and weaknesses, I began to recognize how arbitrary these designations can be. The New York Times provided yet another article that underscores the mercurial nature of this process. A documentary on the treatment of Autism in France revealed that some mental health clinicians, specifically in the French psychoanalytic circle, treat Autism as a psychological trauma brought on by a cold and frigid mother. Mon Dieu! This notion, once sadly popular in the United States and similar in its horrific accusatory nature to the notion of the “schizophrenogenic mother” that reigned as recently as the 1970’s, apparently still has adherents in France. Rather than viewing Autism as a medical disorder that benefits from behavioral treatments and training, there are French children who have ended up as psychoanalytic patients to the point of being placed in an “asylum” for six years to undergo psychoanalysis. Frankly, as an American trained psychoanalyst, I find this fact particularly mortifying.

In other words, how a “condition” is viewed by the medical and mental health community determines the fate of the individual and history has shown how mercurial, judgmental and destructive that view can be.

Our Friends: Our daughter has many friends from her years at her special education boarding school Riverview whose diagnoses are on the Autism continuum, yet with I.Q.’s too high to qualify them for adult services. With the impending revision of the diagnostic categories that allowed these children services, fear is spiking that the current crop of children will not meet the newly revised DSM V qualifications for developmental services. Without these services, how will these children grow up to become successful adults in a social world?

Revision Sample: I have reviewed the DSM V revision sample online. Take a look. It seems pretty comprehensive and inclusive to me so please let me know if I am missing something.

Short Term Solutions Become Long Term Drains: There must be no doubt that providing the tools for successful adulthood, in childhood, is a benefit to all society. While still supported by their parents with shelter, food, clothing, transportation, medical services and love, children in public schools can be taught to socialize and communicate with their peers in their communities at far less cost to the government, the tax payer and society in general. If  those same training tools were withheld, that would render the adult versions of these youngsters more likely to become burdens to the medical and legal institutions and places enormous stress on their families. And stress of that nature, research has shown, introduces additional costs to the medical and mental health arena as well as taking a big bite out of worker productivity. Short term cost cutting solutions, where human beings are involved, evolve into long-term drains for all.

Fingers Crossed: By the way, our intellectually disabled daughter just completed reading forty pages of “My Sister’s Keeper” in two days (“I like the movie better)…the Jodi Picoult novel for high schoolers and adults and will probably finish it off pretty soon. (Ms.Picoult is popular with women’s book clubs.) Does our daughter comprehend it? You bet, enough to know that the hot guy in the movie has not appeared in the book, so far. But can she pay a bill, safely cross the street, travel on her own or make critical decisions in an emergency? No. But she sure can read, thanks to years of special education services! Fingers crossed these precious special education resources will remain intact for the severe, the so-called mild, and all those in between whose success in adulthood depends on them. Fingers Crossed.

©Jill Edelman, M.S.W., L.C.S.W. 2012

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