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Asperger’s Is Over-diagnosed? You Try Getting Your Kid Evaluated (updated)

You know what? Everyone who thinks that the autism or Asperger diagnosis is being handed out like candy can suck it, suck it, suck it. Because I am 100 percent sure anyone who says that has never tried to get a child evaluated, diagnosed, and treated for something like autism. It takes months, people. Months and sometimes years. And paperwork. And appointment, after appointment, after appointment.

In an op-ed piece entitled “History of Asperger’s Overdiagnosis” in the February 1 edition of  The New York Times, psychiatrist Paul Steinberg criticizes the diagnosis of Tim Page, a former music critic for The Washington Post. Mr. Page has written in his book Parallel Play of the sense of relief he felt after being diagnosed with Asperger Syndrome as an adult, finally being able to understand a lifetime of social difficulties.

Dr. Steinberg says Mr. Page is “able to compensate more completely than a truly autistic child or adult whose language deficiencies and cognitive deficits can often put him at a level of functioning in the mentally retarded range.”

Wait, what? Did Dr. Steinberg just say that to be truly autistic one has to be mentally retarded? Has he actually read anything by Tim Page? Or Temple Grandin, or John Elder Robison?

Let’s fact check this, shall we?

According to the Centers for Disease Control, anywhere between about 30% and 50% of autistic children are cognitively impaired. However, a lot depends on what kind of IQ test is used. The standard IQ test is the Weschler Intelligence Scale, which is language-dependent. An alternate test is Raven’s Progressive Matrices, which is more visual, and is not timed. Although neurotypical (non-autistic) people tend to score about the same on both tests, autistic people perform significantly better on the Raven test. In fact, one study of 51 autistic adults and children showed that autistic people score, on average, about 30 points higher on the Raven test, pulling all but a couple out of the cognitively impaired range (an IQ under 70). One individual swung from the cognitively impaired range to the 94th percentile.

So, there’s that. Also, when we look at people with Asperger Syndrome, the numbers change significantly. Although people with Asperger Syndrome can have severe delays in social and communication skills, they are verbal and “cognitively intact,” meaning that they are generally of average to above-average intelligence. Despite what Rain Man would have us believe, not all Aspies are savants, but many do excel in certain areas, especially with spatial reasoning.

My own son, who was diagnosed with Asperger at age four, is now almost six years old. He has been doing multiplication since he was three. His vocabulary is off the charts. But he’s still not potty-trained, expresses emotion by flapping his hands, and doesn’t know how to have a conversation with a peer that doesn’t revolve around Lego Star Wars.

In the New York Times piece, Dr. Steinberg also criticizes a 1992 U.S. Department of Education Directive aimed at increasing services for children with autism, Asperger Syndrome, and PDD-NOS. He argues that the directive increased the diagnoses of these disorders. He doesn’t explain why, exactly. Perhaps he believes that parents just adore having their kids labeled and shunted into Special Education.

Speaking of Special Education, Dr. Steinberg also argues that “the downside to this diagnosis lies in evidence that children with social disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have lower self-esteem and poorer social development when inappropriately placed in school environments with truly autistic children.”

Um, yeah. That’s why my son is in a mainstream classroom with support. The solution isn’t to ignore the needs of the child by not diagnosing him, the solution is to educate the child in the most appropriate and least restrictive environment.

Dr. Steinberg also says, “In addition, many of us clinicians have seen young adults denied job opportunities, for example in the Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead of a social disability.”

That’s actually called discrimination. People with Autism Spectrum Disorder are protected under the Americans with Disabilities Act. If a job requires social skills that an autistic person simply doesn’t have, then fine. But if a job is denied solely on the basis of a diagnosis — not skills — then it’s illegal.

As with any medical diagnosis — particularly one so poorly understood as the autism spectrum — misdiagnoses do happen. Another op-ed piece that also appeared in yesterday’s New York Times is by a writer, Benjamin Nugent, who was diagnosed with Asperger Syndrome as a teenager, but later realized the diagnosis didn’t really fit. Mr. Nugent lauds the proposed changes to the diagnostic criteria for autism.

The definition should be narrowed. I don’t want a kid with mild autism to go untreated. But I don’t want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn’t true.

Mr. Nugent writes, “Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome. ”

I get his point: not everyone who is shy, geeky, and into Legos has Asperger. But I believe a skilled clinician can tell the difference. Mr. Nugent says that he was diagnosed by his mother, whom he describes as a psychology professor and Asperger specialist, and “another expert in her department.”  I’m not an ethics expert, but I’m pretty sure that generally speaking, it’s not recommended that psychologists diagnose their own kids.

As our family has experienced it, the process of being evaluated for the autism spectrum is lengthy. It involves input from parents and teachers, observation, and extensive testing. It takes months, if not years. I have never met a parent, school psychologist, or psychiatrist who didn’t take the matter extremely seriously. I don’t have a problem with the proposed changes to the diagnostic criteria, but I do have a problem with pretending that ignoring autism will make it go away.

Update: Tim Page has responded to Dr. Steinberg’s criticisms in a letter to the editor in the Thursday, February 2 edition of The New York Times. The letter reads, in part:

“Social disability” does not begin to sum up my lifelong history of insomnia, anxiety, depression, cluelessness and isolation, little of which was assuaged by Emily Post. Nor, in all modesty, does it address the singleminded, fiercely exclusive energy I can bring to a project that has captured my attention, the immersion in an otherworldly ecstasy that music, writing and film provide, and the very occasional but no less profound joy in my own strangeness.

I do not allow my diagnosis to control my life, and yes, I know that I am “high functioning” and not necessarily typical. Still, I have no doubt that Asperger syndrome explains a great deal about my triumphs, as well as my tragedies.

 

(Image credit: Joslyn Gray for Strollerderby.)

Joslyn Gray blogs about autism and special needs parenting at stark. raving. mad. mommy. You can also follow her on Facebook and Twitter.

More on Babble:
The top 25 autism spectrum blogs
My son with Asperger’s: Why it took me so long to admit he was on the spectrum
Signs of autism: How early can you detect it?

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