Autism Society Responds to Approved DSM-5 Autism Definition

December 3, 2012
By Autism Society

The American Psychiatric Association (APA) on Saturday approved a fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), signing off on a sweeping change to the definition of autism spectrum disorder.

The DSM-5 effectively eliminates autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) by dissolving them into one diagnosis called autism spectrum disorder. According to the APA, this represents an effort to more accurately diagnose all individuals showing the signs of autism.

The DSM-5 is important because it provides the diagnostic labels that governments, insurance companies, schools and other institutions use to determine the services needed by each individual. The Autism Society, the nation’s largest grassroots autism organization, strongly advocates that individuals with autism spectrum disorder should continue to access their existing services or maintain their waiting list positions if a diagnosis changes under the DSM-5.

The Autism Society has been very involved throughout this process. We have submitted written comments to the APA advising that changes must not affect the services individuals receive.  We have been invited to discuss these upcoming changes with the APA and will continue to represent the rights of individuals with autism–advocating for the protection of services. The Autism Society hosted a keynote session on the DSM-5 at its national conference last July, during which APA working group member Dr. Bryan King explained the need to make autism diagnosis more reliable and valid from person to person and place to place.

Here are a few important points the Autism Society believes all individuals affected by autism should know:

  • The specific diagnoses that are considered Pervasive Developmental Disorders are all quite complex. According to many clinicians, diagnosis of co-morbid conditions occurs too frequently because the definition of autism in the DSM-5 is too long and too complicated.
  • The APA reports that it did not find significant data to differentiate a diagnosis of Asperger’s Syndrome, PDD-NOS and “high functioning” autism.
  • Broad criteria has made it more difficult to grasp an already complex disorder that manifests itself differently person to person.
  • A lack of clinical clarity can also lead to particular populations (females, minorities, and those from low income families) from being properly evaluated, resulting in misdiagnosis and improper treatment.
  • In the DSM, a diagnosis of autism is based on whether an individual meets a certain threshold of impairment. For example, all individuals experience some level of anxiety at times, but some individuals experience anxiety to an extent that impacts their daily lives and their ability to function in the world. If the anxiety is determined to be present to the extent that it hurts the person’s well-being, a diagnostic label would be provided.

In the beginning of DSM-5 considerations, APA’s Neurodevelopmental Workgroup met with advocacy groups including the Autism Society, the Autistic Self Advocacy Network and others to solicit feedback and learn about the specific issues important to people living with autism. As part of the revision process, field trials were conducted over 11 sites and involved 2,000 patients to determine the extent to which separate clinicians from separate sites would make the same diagnosis (indicating reliable assessment). Of the 11 sites, 7 were adults (1 geriatric) and four were pediatric. According to information received from the APA, field tests were conducted by trained clinicians using test-retest methods on real patients.