Fortugno: Don't panic about autism changes

Dominick A. Fortugno is director of the School Psychology Program at the Touro College Graduate School of Psychology in Bay Shore.

A recent report from a prominent researcher in developmental disorders has stoked fear and controversy among parents and educators by suggesting that some children currently diagnosed with autism-related disabilities may soon find themselves left out in the cold.

The reality is more complex.

As many are now aware, the American Psychiatric Association is revising the Diagnostic and Statistical Manual of Mental Disorders (DSM), which serves as the authority for diagnosing psychological dysfunction in the United States.

Changes in this manual have always been contentious, but the issue took on greater importance last month when Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine, indicated large percentages of children diagnosed with "high-functioning" autism variants like Asperger's disorder could fail to meet the revised criteria for Autism Spectrum Disorder (ASD) in the new fifth edition. Parents -- including many here on Long Island -- have reacted with understandable concern over the possibility that their children may lose counseling, speech and other related services.

It is certainly important for parents -- especially those in Nassau and Suffolk counties, where autism rates are higher than in many other areas in New York -- to stay well informed on such issues. But it is still too early to guess what effect these changes will have.

Volkmar and his colleagues have presented only a preliminary analysis, so other researchers won't have the chance to review their findings until next month at the earliest. Meanwhile, projections by the task force in charge of revising the DSM suggest that the number of people excluded under the proposed changes would be much smaller than many had previously feared.

More important, the proposed changes may help correct what many researchers -- including Volkmar -- have long suspected: that the explosion in autism over the past few decades is due at least in part to misdiagnosis.

Since its first inclusion in the DSM in 1980, the definition of autism has been repeatedly expanded, blurring the lines between it and other disabilities, including cognitive and speech delay. In addition, increased federal funding for autistic disorders has created an incentive for professionals to make an autism-related diagnosis in the hopes of securing services for students who would not otherwise meet the criteria for one of the recognized special education categories.

This combination of incentives, vagueness and a system that predicates support on specific diagnoses may help to explain why the number of children suspected of having autism has ballooned from one in 1,000 to almost one in 100 over the course of just a few years. Classifications of autism spectrum disorders in New York have risen more than 400 percent since 1989, and classifications among school-age children receiving special education services doubled from 2000 to 2007. Suffolk County has the fifth-highest percentage of ASD classifications in the state.

The new definition seeks to consolidate these disorders into a single diagnosis. By focusing on social-emotional development and nonverbal communication, the new criteria may better distinguish between children with disorders on the autism spectrum and those with such other difficulties as speech and language dysfunction.

Such a change would help ensure that services are more quickly and appropriately tailored to the individual student. The proposed revisions also include a severity scale based on the level of support needed for social communication and restricted or repetitive behaviors, thereby further increasing flexibility in the diagnosis.

Both parents and professionals are right to be attentive, but it is still too early in the process to fear these potential revisions. As more information about the proposed revisions becomes available, we will be better able to judge what impact the proposed changes will have on our students and our children. For now, the best option is to be aware -- and keep an open mind.