I spent the past week organizing and reviewing my research on the connections between autism and the environment, which once again reminded me just how little anyone -- experts, doctors, parents, journalists, whoever -- actually knows about the subject. The only truth I’ve found in almost two years immersed in the subject is that definitive answers to the most fundamental questions about autism -- What is it? What causes it? What can be done about it? -- are virtually nonexistent.
On a journalistic level, that’s pretty damned exciting. There’s always something new to explore and write about. But on a societal level, it’s downright scary. Take the what-is-it angle. Here we have a range of mental disorders that, depending on how the spectrum is defined, impacts the lives and families of roughly one out of every 100 American children. Scientists and experts have studied it for more than 70 years. And yet, they haven’t even agreed to a firm diagnosis.
In February, the American Psychiatric Association (APA), the ultimate authority on what is and isn’t a mental disorder in the United States, proposed fundamentally changing the diagnostic criteria for autism, again. An APA task force assigned to study the matter believes that the five Pervasive Developmental Disorders that comprise the autism spectrum -- Autistic Disorder, Asperger’s Disorder, Pervasive Developmental Disability-Not Otherwise Specified (PDD-NOS), Rett's Syndrome and Childhood Disintegrative Disorder -- should be eliminated and folded into one diagnosis called Autism Spectrum Disorder.
"Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association." - National Public Radio, February 2010
“Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association,” National Public Radio (NPR) reported when the APA released a draft of its Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-5) four months ago.
The DSM-5 is scheduled for publication in May 2013, and if the recommended changes are included, it would mark the fourth complete overhaul of autism diagnostics since 1980, when diagnostic criteria for Infantile Autism was first included in the DSM-3. Autistic Disorder and PDD-NOS were added in a 1987 revision of the DSM-3. Asperger’s was added to the DSM-4 in 1994.
Not only do the task force members suggest subsuming all five forms of autism into one, they also streamline the diagnostic criteria to a mere 115 words. “Marked deficits in nonverbal and verbal communication used for social interaction” will cover everyone on the spectrum, from those who do not speak to those who excel at the highest levels of academia.
The issues that these changes raise are many and varied, from the social to the scientific.
The first parent of a child on the spectrum I ever spoke to objected strenuously when I suggested her son was autistic. Asperger’s, she informed me, was not autism. I was simply misinformed.
NPR quoted Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger's From the Inside Out. "I personally am probably going to have a very hard time calling myself autistic," he said.
"Not only do the task force members suggest subsuming all five forms of autism into one, they also streamline the diagnostic criteria to a mere 115 words."
One of my students last semester wrote about a school here in Bloomington called the College Internship Program that educates young men and women with Asperger’s to claim “their place as citizens of the world.” To classify them in the same category as the Autistic Disorder kids I’ve met and whose parents and caregivers I’ve spoken to seems counterintuitive.
I’m neither a doctor nor a scientist, and the arguments for the change make some sense. In many ways, they’ve come full circle, grouping everyone with an ASD under one diagnostic category as they did in 1980, albeit it a new name with a broadened base. But I was among those who, when I heard the DSM-5 would bring changes to the definition of autism, expected further differentiation of the criteria reflecting the complexities of the disorder, not simplification.
My student interviewed Dr. Christopher McDougle, an autism researcher and chair of the IU School of Medicine’s Department of Psychiatry, who echoed several doctors and experts interviewed by NPR. “On the one side, I think that it is reasonable to eliminate the diagnosis of Asperger’s Disorder from the current criteria because there are no objective data that support it as a distinct diagnostic entity,” he said.
But, he added, significant research on Asperger’s has been conducted since 1994, and its value is now in question.
"Significant research on Asperger’s has been conducted since 1994, whose value is now in question."
Dr. Edward Aull, a pediatric specialist at St. Vincent Hospital in Carmel, agreed with that assessment. “As you look at research papers, you won’t be able to compare them from one to the other because they have changed the criteria,” he told my student. “People in one criterion don’t meet the criteria in the other, so that is a big thing.”
Unfortunately, here in the waning days of the Reagan era, money and politics can never be discounted in anything science does, especially a discipline as subjective and imprecise as mental health.
And, as I was reminded when I recently informed a health care professional with preconceived opinions on autism about the proposed changes, cynicism about the whole subject pervades public opinion.
She looked at me knowingly and said, “It’s a numbers game, isn’t it?”
She said it twice.