The newest addition of the DSM-5 manual is scheduled for publication in May 2013. The DSM is used by clinicians to determine whether a client or patient meets or does not meet the criteria for a particular diagnosis.

With a new edition comes a potential new definition of autism that can be critical for many people, especially regarding funding. Psychiatrists and parents have voiced concerns that the new definition of autism in the DSM-5 will exclude many people from both a diagnosis and state services.

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As with many of the disorders in the DSM-5, new diagnostic criteria and classifications are being proposed and reviewed. A new requirement for Autism Spectrum Disorder(ASD) diagnosis is that a child must exhibit symptoms from every area of the DSM diagnostic criteria.

One of the most discussed changes in the DSM-5‘s definition of ASD is the removal of Asperger’s syndrome and PDD-NOS as individual diagnoses. Under the new diagnostic criteria, Asperger’s and PDD-NOS will come under the umbrella of ASD. A child whose diagnosis is currently Asperger’s syndrome would receive a new diagnosis of Autism Spectrum Disorder, with specifiers, such as “autism spectrum disorder with fluent speech” or “autism spectrum disorder with intellectual disability.”

Who will this affect?

Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include severe learning and social problems.

Parents are justifiably concerned that any tightening of the Autistic Spectrum diagnosis will threaten their children’s eligibility for vital services. The Global and Regional Asperger Syndrome Partnership has launched a campaign to lobby the DSM-5 task force to keep a broad-spectrum concept of autism. The campaign urges those affected to contact the DSM-5 Committee to protest the newest changes.

Potential consequences

The overriding concern is what these changes mean for students receiving autism services through their Individualized Education Program. For students who currently have an IEP due to a diagnosis of Asperger’s syndrome, it seems that a change in services would be unlikely, except for the possibility of services for previously unmet needs being added.

The proposed changes are significant, and will affect not only those to whom the diagnostic labels are applied, but also the funding allocation systems and service delivery systems. In the middle of all this change are the parents who are trying to determine what this means for their children.

Backlash

Debate has also been rife among medical professionals. Many divisions of the American Psychological Association have banded together to issue an open letter and petition to the DSM-5 task force and American Psychiatric Association, urging that both associations should work together on any revisions of the DSM. They also publicly oppose various aspects of the proposed changes. Their letter states, “Psychologists are not only consumers and users of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates.”

Both the medical profession and general public have generated a frenzy of petitions and campaigns against the proposed changes to the DSM autism criteria.

The APA, meanwhile, has reassured those affected that no previously covered group will be left out in the cold. The changes would involve merging several diagnoses currently listed separately in the DSM-5 into a single umbrella category of “Autism Spectrum Disorder.”

“The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from ASD,” said James Scully, MD, medical director of the APA, in a release.

Neurodevelopmental Work Group member Bryan H. King, MD, believes that with the changes “we are going to be able to better characterize individuals with autism, in part because of clearer criteria that have been written to better account for people across the age span. And one could argue that this will actually make it easier for adolescents and adults, and even young children potentially, to meet criteria for diagnosis than was previously the case.”

What can I do?

Parents, caregivers and special education advocates must become knowledgeable about the proposed diagnostic revisions for Autism Spectrum Disorder and the possible effects on students receiving autism-related services. It is imperative that attention be given to the APA’s development of ASD secondary feature definitions, and the specific qualifiers that will be attached to an autism diagnosis. Becoming educated about these changes and additions is necessary so that you can be your student’s best, most effective educational and medical advocate.

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Joshua Weinstein has been an educator and administrator for over four decades. He holds a Ph.D., two Masters Degrees in Educational Administration and Supervision and an MBA in Executive Administration. He has been the CEO in healthcare, social services, and business corporations. He’s the president and founder of Shema Kolainu-Hear Our Voices, Tishma for children with autism in Jerusalem and ICare4Autism- International Center for Autism Research & Education- a global leader in autism research & education. He can be reached via email at [email protected].