Contributor: Thomas Frazier, II, PhD
Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy
Nearly a year ago, the world of autism diagnosis changed.
When the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) in May 2013, the way we identify autism was one of the biggest changes by far.
Since then, DSM-5 has brought its share of controversy — and questions from concerned parents. Below are answers to some of the most common ones.
What’s the biggest change in autism diagnosis?
Consolidation. In the past, we used different diagnoses: autistic disorder, Asperger’s syndrome and pervasive development disorder not otherwise specified (PDD-NOS), for example. But there was a lot of overlap and inconsistency between them.
Now, there is only one diagnosis: autism spectrum disorder (ASD). For an ASD diagnosis, you must meet a specific mix of social communication and interaction concerns and repetitive or restrictive behaviors.
[Tweet “A year into #autism diagnosis changes, parents have questions. Get answers here.”]
Why lump everyone together?
I get this question a lot, and I understand why. Your high-functioning child may seem quite different from someone on the more severe end of the autism spectrum.
But the word “spectrum” is key. Think of it in terms of diabetes. No matter your age, sex or ethnicity, you can have a diagnosis of diabetes. You can have high or low cognitive abilities and still have diabetes. Your condition can range from mild to severe.
“Your child should not have to lose critical support because of a change in diagnosis.”
Thomas Frazier II, PhD
Director, Center for Pediatric Behavioral Health, Center for Autism
The same is true of autism. Autism really includes two things: Repetitive or inflexible behavior and problems with social interaction and communication. The social part is about perspective taking — how you “read” people and respond to social cues.
Severity varies from person to person, but these issues are present for everyone on the spectrum.
Why is the mix of social concerns and repetitive behavior so important?
To get people the right services, we have to get the right diagnosis.
Say a child has repetitive behaviors — lining up toys a certain way or touching objects over and over again — but no issues with social interaction. The child may have obsessive-compulsive disorder (OCD) rather than autism. The difference matters; we don’t use all the same tools and services to treat OCD as we do for ASD.
If a child has trouble interacting with others but displays no repetitive behavior, DSM-5 offers a new diagnosis: social communication disorder. Children with social communication disorder may benefit from social skills programs. But they may not need all the other support children with ASD need, including procedures to reduce repetitive behavior. Social communication disorder is a new diagnosis, so only time — and research — will tell.
Could my child lose services?
This is the biggest question for anxious parents. Fortunately, the answer is no in the vast majority of cases, for two reasons.
First, there’s a “grandfather clause.” People diagnosed before DSM-5 automatically should get an updated ASD diagnosis. However, there have been some reports of schools or insurers insisting on a re-assessment. If this happens to you, talk to your doctor or social worker about what steps you can take to correct it. Your child should not have to lose critical support because of a change in diagnosis.
Second, most people who fit autism categories before DSM-5 also fit ASD afterward. In field testing in 2012, researchers found the DSM-5 criteria identified 91 percent of children diagnosed previously. Others may fall under new categories, including social communication disorder.
Studies in coming years will help us learn if children are slipping through the cracks under DSM-5.
Can I — or my child — still use the Asperger’s label?
Yes, absolutely. This has been controversial because many people with Asperger’s use the label as a source of identity.
If you had an Asperger’s diagnosis, you may now fall under ASD for clinical purposes. But people who claim the Asperger’s label with pride often do so because of the sense of community it inspires — and there’s no reason for that to change.