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A parenting perspective on the latest headlines
Jan 30, 2012
11:45 AM

Kids Autism Diagnosis Faces Changes, Raises Questions

Proposed changes to its definition could leave many high-functioning autistic children behind. How might this affect southeast Michigan families?

Kids Autism Diagnosis Faces Changes, Raises Questions

By May 2013, the definition of autism might be changed, according to a New York Times report – which would re-diagnose thousands and threaten the services many high-functioning autistic kids in metro Detroit and Ann Arbor currently receive.

The proposed criteria revision would lump the less severe, highest-functioning forms of autism – such as Asperger's syndrome – into a single diagnosis of autism spectrum disorder or ASD.

The revisions to the Diagnostic and Statistic Manual – the guide used by doctors to diagnose mental health disorders, updated by the American Psychiatric Association – wouldn't be final until later this year, when a final draft of the DSM-V is done, according to WebMD.

So how might the changes affect the autistic community? Is it something to be worried about? Here is a closer look.

Current standards for diagnosis

According to the U.S. Centers for Disease Control and Prevention, about one in 100 children in the United States are diagnosed with ASDs, which come in different forms based on severity. Currently, if a person displays six out of 12 behaviors on a list of standards, they qualify for autism diagnosis.

What are the changes?

Now, pundits selected by the APA to write the fifth edition of the DSM are looking to narrow what constitutes as autism. Three of the less severe forms of autism – Asperger's syndrome, "pervasive developmental disorder not otherwise specified" (PDD-NOS) and childhood disintegrative disorder – would be grouped in with ASD, WebMD notes.

Instead of displaying six out of 12 behaviors, "the person would have to exhibit three deficits in social interaction and communication and at least two repetitive behaviors, a much narrower menu," wrote the Times.

Researcher Fred R. Volkmar, MD, director of the Child Study Center at the Yale School of Medicine, analyzed the new definition to see what its impact would be on diagnosis and presented his findings on Jan. 19, the Times article said.

Volkmar, who resigned from the APA's committee at an earlier time, found that approximately 65 percent of people with high-functioning forms of autism would no longer meet the definition, a CBS report noted. (The details of Volkmar's research are also at WebMD.)

How this affects Michigan kids with autism

The pending change and Volkmar's preliminary findings have raised concerns about the services autistic children currently diagnosed with Asperger's or PDD-NOS will have if the definition change becomes official.

However, Dr. Colleen Allen, director of the Autism Alliance of Michigan and the director for the Henry Ford Center for Autism and Developmental Disabilities, said though there's been a lot of uproar, "It's much too early for families to be getting too worried about, because nothing is definitive yet."

For autistic individuals living in states where insurance covers autism-related services, the definition change would mean their services are no longer covered, Allen says. But in Michigan, autism-related needs are currently not covered by insurance. So, she adds, it "doesn't affect anybody at this point in time."

Michigan Gov. Rick Snyder is still pushing for autism-related services to be covered under insurance. If the proposed bills are approved and the definition is changed, Michigan's autistic community would then face the same challenges with insurance coverage as other states, Allen says.

But the definition change wouldn't affect educational criteria, Allen says – meaning in-school therapies will remain the same because they don't necessarily follow the DSM-IV except as a guide.

"In some sense, (the definition change is) going to make it easier to diagnose," she says, "but it's not going to be easier to diagnose those who don't fit classic (autism)."

The final draft of DSM-V is slated to be finished by the end of 2012. The DSM-V would then be official in May 2013.

Dec 12, 2012 09:32 pm
 Posted by  Mom2GTASD

I hope those families in Detroit and A2 have enough clout to do something about these changes. Like it or not, this change is about money, pure and simple. Communities further north in Michigan have already been dealing with this issue, as services have been denied, cut and reduced for kids with Aspergers, by stretching the interpretation of criteria, intimidating parents and denying that Aspergers exists. I had the SpEd director in one district tell me that to qualify as having autistic behaviors, my son would have to be flapping his hands so badly he couldn't read! The evaluations are only looking at the overt behaviors, not the quieter, but still measurable differences in learning behaviors.

Sadly, LRE (lease restrictive environment) has been used as an excuse to deny unobtrusive study aids as an "unfair advantage" over peers. The original concern was to give kids with challenges the best workable access to the same level of education as their peers and to prevent social stigma as a side benefit. However, when a kid is so challenged in sensory areas that inclusion is not workable or when their unusual traits are held up to their peers as examples of "poor choices," neither advantage is satisfied.

In some situations, kids with Aspergers can excel in academics. In other situations, the social and sensory challenges can make going to school a nightmare for them, more so because they are perceived as "normal" kids who merely choose to "act weird" or be "noncompliant."

To those southern Michigan parents facing the new changes, I can only quote Alice Cooper, "welcome to my nightmare."

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