Will new definition of autism hinder access to health insurance benefits?

Kathryn Hawkins

The American Psychiatric Association’s new criteria for an autism diagnosis may shut out many higher-functioning patients who would fit under the current definition, some experts say. Losing the diagnosis could limit their access to therapy covered by health insurance plans and state-funded programs.

Fred Volkmar, director of the Yale University Autism Program, has evaluated the characteristics of a group of people classified as being within the spectrum. Under the new criteria, he found that half would not qualify for the diagnosis.

According to research from Scientific American, there currently are 2,027 ways to be diagnosed with an autistic spectrum disorder; under the more restrictive guidelines, there are just 11 ways to meet the criteria.

Meeting the criteria

Now, as many as one in every 100 children is diagnosed with autism, Asperger’s syndrome or PDD-NOS (“pervasive development disorder, not otherwise specified”) — all conditions on the autism spectrum, but categorized under separate definitions.

However, the American Psychiatric Association plans to publish updated criteria for a spectrum diagnosis in the forthcoming edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in May 2013. The three separate categories will be grouped together, and diagnostic criteria will be more limited. A person must demonstrate three deficits in social communication (such as limited vocabulary or failure to speak), show two out of four patterns of repetitive behavior and initially display these symptoms in childhood.

“The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder,” Dr. James Scully, medical director of the association, says in a statement.

Why it matters

Typically, people diagnosed with autism-spectrum disorders have access to some state-funded therapeutic services. Twenty-six states have mandated that private health insurance companies cover autism-related services and treatments, including early intervention therapy to help children develop social and communication skills.

After the new definition is published, some fear it may become more difficult for people with Asperger’s syndrome and PDD-NOS to get access to state- and insurance-funded treatment. Even for people on the lower end of the existing spectrum, families without access to insurance and state services may pay as much as $67,000 a year for medical costs and related expenses, according to a Harvard University School of Public Health study.

Karen Fessel, director of the nonprofit Autism Health Insurance Project, says that in addition to preventing new diagnoses, the DSM-5 update could trigger reclassification for people who previously got autism-spectrum diagnoses.

“It makes it so that if you’re borderline, if you have PDD-NOS or Asperger’s syndrome, you could fall out of the autism-spectrum diagnosis,” she says. “Where they’re going is they don’t want to have to provide more intensive services for people who don’t fall into the autistic category.”

In Fessel’s opinion, “it was done to save insurance companies money.”

Fessel thinks many patients would suffer if they didn’t have access to the insurance-funded services that an autistic-spectrum diagnosis provides now.

“Higher-functioning individuals benefit from services such as ABA (applied behavioral analysis) therapy and group meetings that focus on social skills training,” she says. “Even those with a less intense diagnosis still need the services. Early intervention can be the difference between not being able to function and being a fully functioning adult.”

One mother’s story

Pam Ragland, a California mother whose 9-year-old son was diagnosed with autism in 2011, is concerned that the new criteria would make it more difficult for children like him to get diagnosed, as he demonstrates relatively good communication skills.

“He was having trouble retaining information, he needs help to better understand how he feels so he can communicate it, and he needs help with social cues,” Ragland says. “The learning aspect has been helped greatly by nutrition. But the rest are special services that he still needs.”

Ragland contends that under the new guidelines, her son no longer would meet the autism-spectrum criteria and would not be entitled to state- and insurance-funded services. “If we are looking at breakthroughs to help these kids, this kind of change would actually act as a deterrent to progress,” she says.

A different perspective

On the other hand, Dr. Joanne Gillis-Donovan, president of Melmark, a nonprofit provider of services to children diagnosed with autism and their families, doesn’t think the updated criteria will make a difference.

“The term ‘spectrum’ is a useful concept in that there are characteristics that run through all individuals with the diagnosis,” she says. “Difficulty with communicating and calibrating social exchange is core to the diagnosis.”

Gillis-Donovan thinks the new classification incorporates all of the primary indicators of autism, so no one in need of therapeutic services is likely to be left out. People who have difficulty with communication and social interaction will be diagnosed under a single autistic-spectrum umbrella, rather than being singled out for a single diagnosis such as Asperger’s syndrome.

“Everybody worries whenever diagnostic criteria is changed, asking, ‘Will I get fewer services than I had access to before?’” Gillis-Donovan says. “I don’t believe that’s the case.”

Should autism be called a psychiatric condition?

No matter what the case may be, there’s a larger issue at play: Should the American Psychiatric Association even have a role in setting criteria for autism-spectrum disorders?

Dr. Mary Ann Block, an osteopathic physician in Hurst, Texas, who’s treated hundreds of patients with autism, doesn’t think so. “Autism is a neurological disorder, not a psychiatric one,” she says. “It should not be listed or defined in the DSM. I vote to remove it entirely from psychiatry and let it stand as a true medical disorder.”

Doing so may help patients gain access to more insurance coverage as well.

“Insurance companies are used to providing access for health care, and they’re not sure if autism should come under their purview,” Gillis-Donovan says.