The federal Interagency Autism Coordinating Committee (IACC) has issued a statement urging concern about how practitioners are applying the DSM-5 criteria for autism introduced last May – “so as to not have the unintended consequence of reducing critical services.”
The statement supports Autism Speaks’ longstanding concerns that the DSM-5 criteria can exclude some individuals who would have previously received an autism diagnosis under the DSM-IV system. As a result these individuals may no longer qualify for services through their educational systems or health insurers.
DSM-5 stands for the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders. The manual is widely used to diagnose neurodevelopmental and mental health conditions in North America.
The new IACC statement emphasizes that individuals previously diagnosed with an autism spectrum disorder under DSM-IV should retain their diagnosis and not be required to be re-evaluated under DSM-5 to keep services. The DSM-5 manual states this explicitly.
Worrisome reports
Yet reports received through Autism Speaks’ online DSM-5 survey indicate that such re-evaluations are occurring and, in at least some cases, resulting in lost services.
Writes one parent: “The regional center which funds services for my son is seeking to have my son reevaluated despite a 10-year, well-established diagnosis of PDD-NOS. [They] are saying any PDD-NOS case needs reevaluation.”
This is unacceptable, says developmental pediatrician Paul Wang, Autism Speaks senior vice president and head of medical research. “Despite the clear statement in DSM5 that individuals with well-established diagnoses merit continued diagnosis with ASD, it appears that some insurance companies and some school districts are requesting these re-evaluations.”
DSM-5 and social communication disorder
By way of background, the DSM-5 combined the previously separate subtypes of autistic disorder, Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS) into one diagnosis of autism spectrum disorder (ASD). It also revised the criteria for diagnosis. (See our DSM-5 Q&A here.)
At the same time, the DSM-5 introduced the new non-autism diagnosis: social communication disorder (SCD). It is meant to apply to individuals who have problems with the social use of language, but don’t have the restricted interests or repetitive behaviors seen in ASD.
Read the complete DSM-5 criteria for SCD and ASD here.
Field tests of the DSM-5 system suggest that it might result in an SCD diagnosis for up to a third of children who would have previously been diagnosed with the autism subtype PDD-NOS (pervasive developmental disorder-not otherwise specified).
“This is of concern because no treatment guidelines have yet been established for this newly named disorder,” Dr. Wang says. “However, we know that these individuals would benefit from many of the same treatments that are effective for individuals with autism.”
Recommendations for SCD
In its statement, the IACC likewise states that many of the children now being diagnosed with SCD would benefit from therapies and educational services designed to help children with autism overcome social communication challenges. In addition, the committee members suggest that individuals with SCD may benefit from therapies for pragmatic language disorder (not an official DSM-5 diagnosis).
However, the symptoms used to diagnose SCD don’t typically emerge until after 4 years of age. As a result, the diagnosis isn’t likely to help children receive the early intervention services that can best improve outcomes.
“It’s crucial for parents to understand that their child doesn’t need a formal diagnosis of ASD or SCD to receive early intervention services for developmental delays and other symptoms that interfere with learning and day-to-day function,” Dr. Wang emphasizes.
So a young child with some symptoms of either ASD or SCD may qualify for state-mandated early intervention services. Parents can request a free developmental assessment through their state department of health. Click here for a state-by-state directory.
Other DSM-5 concerns
In addition, the IACC noted that too little is known about how reliably the new DSM-5 system can identify autism in children under 3, adults or individuals from diverse ethnic backgrounds. The committee urges practitioners to pay special attention to individuals in these groups who narrowly miss the DSM-5 criteria for autism.
“Services should be based on need rather than diagnosis,” the IACC states. For example, the committee argues that a toddler who shows impaired social skills or communication would benefit from early intensive behavioral intervention aimed at improving those skills, regardless of diagnosis.
Similarly, it states that an autism evaluation for an adult should take into account a complete lifetime history. This may reveal repetitive behaviors or sensory issues that were more obvious in childhood.
Share your experiences with Autism Speaks
Autism Speaks remains committed to advocate for all those who need autism-related services. Have you or your child been evaluated for autism or social communication disorder under the new criteria? If you or your child were previously diagnosed with autism under DSM-IV, has a school district or health insurer asked for a re-evaluation? Autism Speaks asks that individuals, parents and professionals continue to share their experiences through its online DSM-5 survey. If you need immediate help, please contact our Autism Response Team at 888-288-4762, en Español 888-772-9050 or email familyservices@autismspeaks.org.