A New York Times article on January 19 entitled “New Definition of Autism May Exclude Many” has started a panic in the autism community about the changes in the definition of autism scheduled for release in the DSM 5. Are our children in danger of losing services? Can we hurry science? Is anything really changing? These questions and more are perplexing the autism community and professionals as well. I write from the perspective of a practicing psychologist and as the parent of an adult child with autism.
Let's not lose sight of the bigger picture. The struggle to get and keep good services for a child diagnosed with autism has been the story of my life with my son for over 30 years. Anyone who cannot afford to pay for the services themselves has faced and continues to face the same uphill battle. I doubt that this will change in either direction with the new criteria.
Debates between experts are not new in autism but can be disturbing to families who are caught in the middle and don’t know what to believe. The firestorm we are witnessing is based upon an unpublished study founded upon questionable data that has not been reviewed by other scientists. Psychiatrist Fred Volkmar from the Child Study Center at the Yale School of Medicine stepped down from the DSM committee, presented this data to the Icelandic Medical Association and then participated in the NY Times article. It looks like Dr. Volkmar decided to take his issues with the DSM 5 autism criteria to the court of public opinion.
Based on this study, the New York Times reported that “about a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three-quarters of those with Asperger syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not.” No wonder that people are scared. Access to services for all affected by the symptoms of autism is vital and any threat to this is terrifying. But we don’t really have evidence that this is what will happen with the DSM changes. DSM 5 field trials are underway, and Autism Speaks and the Autism Society advocate for an in-depth assessment of the impact of the DSM 5 changes upon those currently receiving services.
Every time I think I have my mind wrapped around the controversy, I read something else and become re-confused—at least temporarily. Many colleagues who are mental health professionals are having the same reaction to DSM 5 changes in general, not just the autism criteria. Change that can impact your family can be difficult, let alone when researchers and well known doctors are arguing on public forums. If well-read professionals feel confused and concerned how are parents and others supposed to feel?
In reviewing the children and adults diagnosed with autism in our psychology practice over the past 20 years, I have not come across anyone who would lose the autism diagnosis. On the contrary, we have served many families whose children were misdiagnosed and undiagnosed several times before finally being correctly diagnosed with autism. In recent years, because of the increased awareness of the symptoms of autism, we have also ruled out autism when it was suspected and not confirmed upon careful evaluation.
We have also observed for several years, that the autism diagnosis by itself does not lead to the level of services experts recommend. A two year old child just diagnosed with autism, for example, in most parts of the United States gets only a few hours of home based services per week, while experts recommend 25 hours of programming per week. Despite the increasing ability to diagnose autism spectrum disorders accurately in very young children, the actual practice lags behind. Parents and professionals know all too well that the lack of or removal of services has been an ongoing threat. Parents have had to argue the challenges faced by their child and their symptoms in order to get what their child needs regardless of the autism label. Many schools are poorly funded, especially in the inner cities and rural areas. Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers. Even in relatively better funded school districts, services are often cut back especially when children make progress.
From my perspective, it is preposterous to say that over-diagnosis of autism is a major problem. That position is in denial of the everyday life of families who love and care for children with the symptoms of autism. Scientifically, we do not know how many currently diagnosed children and adults will no longer meet the new criteria. The issue hinges upon how professionals will interpret the new definition. That problem is nothing new. DSM 4 and DSM 3 had the same problem.