Redefining autism: The new spectrum

If a new diagnostic definition takes effect in 2013, fewer people may be diagnosed with autism spectrum disorders, according to researchers at Yale University.

Dr. Fred Volkmar, along with Brian Reichow and James McPartland, evaluated proposed changes to the definition of autism in the fifth edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.

The proposed definition will merge autism and Asperger syndrome into an all-encompassing category of autism spectrum disorder. According to the researchers, about half of those who were evaluated in a 1994 field trial for the previous edition of the DSM would not be diagnosed with autism under the new definition. Their full study will be released online in late February or early March.

But Kim Collins, clinical psychologist at the University’s Division of Disability Resources and Educational Services, or DRES, said the DSM-5 changes are still being worked on, and “anything at this point is still very speculative.”

On the University level, Greg Lambeth, clinical counselor at the Counseling Center, said he does not think the change will impact his work on campus.

“I’m not concerned that students are going to suddenly not meet the criteria for a diagnosis,” Lambeth said. “Individuals with Asperger’s will still meet the criteria for autism spectrum disorder (under the new definition). I think (the DSM-5 change) probably matters more in the pediatric population.”

Linda Tortorelli, program coordinator at The Autism Program at the University, said she thinks it will take several years for the full implications of the DSM-5 change to be noticed on campus because it may not affect those who have already been diagnosed.

“It’s not like they’re going to take away someone’s diagnosis,” Tortorelli said. “They’re not going to re-screen everyone (who’s been diagnosed) and give them a new diagnosis.”

Tortorelli also said rather than decreasing the support offered to students with autism, several schools and universities are creating programs to help support them. She said this is because they recognize the strengths of this population and are more actively recruiting students with Asperger syndrome or autism.

Currently, students receive accommodations through the University such as being given more time for tests or taking tests in less distracting environments. She said she hopes the University can do more to reach out to these students in the future.

If there’s a fictional character that exemplifies a person with Asperger syndrome, Tortorelli said it would be Adrian Monk, the brilliant but idiosyncratic detective on the television program “Monk.”

“He’s a great detective, but he needs a personal assistant to help him with his daily activities,” Tortorelli said. “Students with Asperger’s often have a deficit in what we call ‘executive functioning,’ which is what helps most of us do things like planning and organizing.”

Jonathan Thomas-Stagg, clinical psychologist at DRES, said University-provided accommodations serve to help students cope with this lack of executive functioning.

There are currently fewer than 100 students on campus who have disclosed to DRES that they have an autism spectrum disorder, according to Thomas-Stagg, but he said he thinks there may be a large discrepancy between those with the disorder and those who have sought help through DRES. Difficulties with social interaction and communication as well as repetitive behavior and intense interests characterize autism spectrum disorders, which Thomas-Stagg said may suggest a reason for that discrepancy.

“A lot of times (students with autism spectrum disorders) lack self-advocacy skills,” he said. “The public, social requirement of disclosing (the disorder to a professor or peer) can be uncomfortable for a student with autism.”

According to Lambeth and Thomas-Stagg, students with autism may not always need accommodations. Lambeth said a student may have a diagnosis of autism or Asperger syndrome, but it does not impact his or her ability to learn.

“We are dealing with a sub-population of people with autism on this campus,” Lambeth said. “This University is highly selective, so students here have some real strengths … and (students with autism at the University) may function a little better than the typical young adult with autism who is not in college.”

Natalie Callen, president of Autism Speaks U at UIUC and senior in Social Work, said her younger brother has autism and she always assumed everyone knew as much about it as she did. She also said people often misunderstand that autism is a spectrum and that the disorder is different for each person.

“A lot of people don’t realize how much experience is individualized,” Callen said. “Everyone has very different ways of communicating, different strengths and areas of improvement.”

Callen, who is also an intern with The Autism Program, said the RSO Autism Speaks U at UIUC is working to raise awareness of autism on campus and advocating for those with autism spectrum disorders.

“If you know one person with autism, you know one person with autism,” Thomas-Stagg said. “Everyone is different.”