Proposed Changes in the Way Autism is Diagnosed Threatens Insurance Coverage for Families

Elmhurst Mayor Pete DiCianni traveled to Springfield on Thursday to testify before the Illinois House Insurance Committee in support of families of children with autism.

Proposed changes in the way autism is diagnosed may mean some families who are receiving insurance coverage for autism treatments and therapies could lose that coverage—unless the Illinois General Assembly passes Senate Bill 679, DiCianni said. The bill would "grandfather in" all Illinois children currently receiving insurance coverage for autism—up to $36,000 a year and unlimited doctor and therapists visits.

The current law guaranteeing insurance coverage was written by DiCianni and passed by the General Assembly in 2008. DiCianni's own daughter Brianna was diagnosed with autism at the age of 2.

The American Psychiatric Association, the entity that writes the Diagnostic and Statistical Manual of Mental Disorders (DSM), is proposing a more specific set of criteria to indicate a diagnosis of autism. It is in the process of writing its fifth edition of the DSM, the first revision in about 10 years.

Right now, as the DSM is written, autism is an "umbrella disorder" that can include everything from behavioral and intellectual disorders to Asperger Syndrome, Rett's disorder and pervasive development disorders not otherwise specified, Mary Kay Betz, executive director of Autism Society of Illinois, said.

"They want to narrow it down so it's not so broad," she said Wednesday. "It's going to help ensure people are getting better treatment."

For example, Asperger Syndrome is very different than regressive autism, she said. Children with regressive autism might lose language skills as they get older; children with Asperger Syndrome will not. As another example, Betz said if a child rocks back and forth and can't talk or write, but they can make eye contact and smile at someone, they may not get the autism diagnosis if the changes are written into the DSM.

The chief sponsor of SB 679 in the Senate is Sen. Don Harmon (D-Oak Park). Rep. Angelo "Skip" Saviano (R-Elmwood Park) is the chief sponsor in the House. The bill recently passed the Senate 56-0, and on Thursday passed the House Insurance Committee. It is headed to the House floor for a vote.

If passed, it will ensure that children who have improved due to therapy and intervention don't lose their diagnosis and, consequently, their benefits, DiCianni said.

DiCianni urges families and friends of those affected by autism to contact their state representatives immediately and ask them to sponsor and vote for SB 679. A list of all state legislators can be found on the Illinois General Assembly website.

"Safeguards need to be in place in order to ensure that children with autism have the ability to get the help they need in order to unlock their world and enable them to reach their full potential," he said.

Statistics show that every 20 minutes a child is diagnosed with autism. Statewide, 20,000 children live with autism. In DuPage County that number is more than 2,500 children, and in Elmhurst, it's 120. But Betz said that with early intervention, autism is "very treatable."

"That's why it's so important for this bill to pass—so they can still get their therapies," she said. "Educational, behavioral, biomedical all have to work together to help bring that child back to us."

The American Psychiatric Association is accepting public comments through June 15 on the proposed changes to the fifth edition of the DSM. Two previous comment periods netted nearly 11,000 responses. Once the current public comment has been considered and incorporated into any revisions, a final recommendation will go before the psychiatric association's board in December.

Read more about the proposed changes here.