A recent article in the New York Times announced that rules for diagnosing autism spectrum disorders (ASDs) will soon change. It noted research suggesting that as a result of the change, many people would lose their autism diagnoses. Since the announcement there has been considerable debate, locally and nationally, over whether the changes will be helpful or harmful to people with an ASD. There is fear that many will lose their diagnoses, and with them an important part of their identities and access to services. To counteract the widespread rumors and speculation on the topic, below are some facts about why people are suddenly rethinking autism and what the changes will likely involve.
What are autism spectrum disorders now?
Autism spectrum disorders are a group of five conditions that involve difficulties with communication and social skills, plus patterns of repetitive behaviors, such as hand flapping or over focusing on intense hobbies. The three most common diagnoses are autism, Asperger’s disorder, and pervasive developmental disorder-not otherwise specific (PDD-NOS).
How is an autism spectrum disorder diagnosed?
The current rules for diagnosing autism spectrum disorders are defined in a book published by the American Psychiatric Association, called the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-Text Revision (DSM-IV-TR). The manual includes definitions of all of the conditions that are recognized as mental disorders, such as depression, anxiety, and schizophrenia. It functions as a rule book for grouping people together, who have similar patterns of behavior that interfere with their ability to function in daily life. What makes “mental disorders” like autism different from more traditional “medical conditions” is that they do not have clear biological features that can be measured. For example, if a person suspects strep, the doctor can order a throat swab to check for the presence of streptococcal bacteria. But mental disorders work differently – they are brain-based and in most cases we do not yet know the exact root causes or biological features that signal the disorder. Instead, conditions like autism are diagnosed based on patterns of behaviors that doctors observe. One of the big challenges in diagnosing autism and other mental disorders is that a person may have many of the features of an autism spectrum disorder, but without the right number or combination, they do not get a diagnosis. So in defining mental disorders, doctors must draw a line in the sand and decide where the cut-off falls. The line for diagnosing autism is changing, which means that a person’s diagnosis may change, even when his symptoms have not.
How were these changes decided upon?
The changes in the definition of autism were determined based on research that has been going on since the last version of the DSM came out. A panel of international experts reviewed the research and found that doctors are good at figuring out whether someone is on the autism spectrum. However, one doctor might give a person a diagnosis of Asperger’s, while another doctor would say it is PDD-NOS. To help resolve this, the new rules will combine the three autism spectrum diagnoses into one, since they are thought to reflect a common set of features and common underlying causes.
What will autism look like in the future?
The DSM-5 will come out in 2013, and the definition of autism spectrum disorders will change, as it has in past editions. Rather than continuing to broaden the spectrum (which has happened in the past), it will become narrower, in some ways. First, autism, Asperger’s disorder, and PDD-NOS are currently separate diagnoses. In the future they will be combined and referred to by a single name – autism spectrum disorder. Second, autism is currently diagnosed in people who have at least six symptoms across three different areas, including difficulties with communication, problems with social skills, and repetitive behaviors. In the future, the new definition will require three specific difficulties with communication/ social skills and at least two repetitive behaviors. Third, to get a current autism diagnosis a person must show developmental delays before the age of 3. The future diagnosis does not have this requirement, which will broaden the definition to include some people with Asperger’s or PDD-NOS diagnoses. Finally, there is no current system for documenting how greatly a person’s symptoms impact everyday life. The new diagnosis will include severity scores designed to reflect the level of support and intervention that the person requires.
What will happen to people who lose their autism spectrum diagnosis?
Although there has been speculation that people might lose their current diagnoses, we do not yet know whether things will play out this way. Many people with Asperger’s disorder and PDD-NOS will undoubtedly be given the new autism spectrum disorder diagnosis. People who do not have repetitive behaviors but still struggle socially may get a new diagnosis called social communication disorder. This new diagnosis is designed to acknowledge that there are people who have perfect vocabularies, but still struggle with the social aspects of language, such as understanding sarcasm or successfully holding a conversation. Since this is a new diagnosis, it is not yet known what types of services will be available.
Where can I get more information about the upcoming changes?
If you would like additional information on the proposed changes in the upcoming DSM-5:
New rules for diagnosing an autism spectrum disorder: www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94
Information about social communication disorder:
Support and programs designed for children: www.unyfeat.org
Laura Silverman, Ph.D., assistant professor of Pediatrics at the University of Rochester Medical Center is a clinical psychologist in Golisano Children’s Hospital’s Kirch Developmental Services Center and director of the Communication and Social Cognition Lab.