Surprising Facts About Autism and the DSM-5

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Zootherapy session for a 10-year old boy suffering from Asperger syndrome

AMELIE-BENOIST / BSIP / Getty Images

In May 2013, the American Psychiatric Association published the Diagnostic and Statistical Manual of Mental Disorders (DSM), Version Five, better known as the DSM-5. The new DSM, like all its predecessors, adds new disorders; eliminates others; and makes changes to criteria determining diagnoses.

The DSM-5 made significant changes to autism diagnostic criteria. The prior version split autism into five separate diagnoses: Asperger syndrome, pervasive developmental disorder–not otherwise specified (PDD-NOS), childhood disintegrative disorder, autistic disorder, and Rett syndrome.

The 2013 update moved Rett syndrome, a genetic disorder, into a different category and created one umbrella category—autism spectrum disorder—for the rest. The idea is that these conditions have such similar symptoms that they do not belong in separate categories, but instead, fall on the same continuum. The DMS-5 also added a separate diagnosis, social communication disorder.

From a paperwork standpoint, this change simply created one diagnostic or billing code for all subtypes of autism. For people with autism and those who love, support, teach or treat them, the change caused some confusion.

Levels of Support

Autism is considered a spectrum because there is a wide and varied degree of functionality. Some people with autism have above average IQs, while others are intellectually disabled. Some people with autism have severe communication problems and may not be able to speak, while others have top-notch communication skills.

While the DSM-5 lumps all autistics under the same name and diagnostic codes, it pulls out three levels of support, with level 1 required the least amount of support and level 3 requiring very substantial support.

Regardless of the designated support level, people with autism may need more support in some areas and less in others. School is one place where supports are often needed, such as a one-to-one classroom aide, occupational therapy, emotional support, or other educational accommodations. These are often spelled out in an Individualized Education Plan or IEP.

Diagnostic Criteria

To qualify for an autism diagnosis under the DSM-IV, a person needed meet 6 out of 12 pieces of criteria in three areas—impairments in social interaction, impairments in communication, and restricted, repetitive, and stereotyped patterns of behavior or interests—with at least two items from group one, and at least one item in each of the other areas.

The DSM-5 requires meeting 5 out of 7 criteria in two areas. It combined social and communication impairments into one category and added sensory processing deficits to stereotyped behaviors. To qualify for an ASD diagnosis under the DSM-5, the person must meet all three items in group one and at least two of the four items in group two.

Before the DSM-5 was even released, there was some controversy regarding whether the new criteria would make it harder to get a diagnosis. A 2012 study from Yale University estimated about 25 percent of those with an autism diagnosis under the DSM-IV would not meet the new criteria under the DSM-5.

A 2014 review from the Centers for Disease Control and Preventions Autism and Developmental Disabilities Monitoring (ADDM) Network found those estimates were much larger than reality. Only 4 percent of those who met the diagnostic criteria in the DSM-IV did not fit the DSM-5 criteria.

During the same period, however, rates of autism in the United States increased. Measured by the number of 8-year-olds with an ASD diagnosis, the autism rate went from 1 in 68 in 2010 to 1 in 59 in 2014.

Lost Diagnoses

The 2013 criteria eliminated the diagnostic terms Asperger syndrome, pervasive developmental disorder–not otherwise specified (PDD-NOS), and childhood disintegrative disorder. Most people who met the criteria for these diagnoses fit under the ASD umbrella.

The DSM-5 noted that "individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger's disorder, or PDD-NOS should be given the diagnosis of autism spectrum disorder." For those who have marked deficits in social communication, but do not meet ASD criteria, a new category, social communication disorder, was added.

While Asperger syndrome is no longer a diagnostic term, Asperger has come to define and describe a community of people with particular strengths and challenges and many people continue to identify themselves or others with the term.

People with Asperger-like symptoms who were diagnosed with ASD after 2013 are typically referred to as having high-functioning autism or HFA. However, HFA is not an official diagnostic term.

Social Communication Disorder

The DSM-5 added a new separate condition called Social Communication Disorder, SCD. This is sometimes referred to as a "lite" version of ASD and is similar to the previous PDD-NOS diagnosis.

Like ASD, people with SCD have persistent difficulties in the social use of verbal and nonverbal communication. The main difference between ASD and SCD is people with ASD also experience sensory issues or repetitive behaviors.

According to a 2017 study published in the Journal of Child Psychology and Psychiatry, SCD isn't qualitatively distinct from ASD but describes those with autistic traits who fall just below the threshold for an ASD diagnosis, but still require support.

Because the diagnosis is still relatively new and there isn't a lot of evidence-based research to support treatment, there are concerns that people who are diagnosed with SCD may not have access to the same services and supports provided to people with ASD diagnoses.

A Word From Verywell

Despite the early criticisms and skepticisms of the new ASD criteria, current research suggests it did not have the negative impact feared by many in the autism community. Keep in mind, the DSM is only a guide and while many clinicians find it useful, no one is legally or ethically required to use in making diagnostic or treatment decisions.

The DSM definition of autism has changed in the past and will change again. Interestingly, the reason why this version of DSM is written as the Arabic "5" rather than the Roman "V" is so it will be easier to create updated versions. Expect to see DSM 5.1, 5.2, and so forth in the future.

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