Parent Tips: Staying Ahead of the Game - The DSM-5 and Autism
By Melissa C. Blackwell, Psy.D. and Vincent P. Culotta, Ph.D, ABN, NeuroBehavioral Associates
This is an October 2015 update to our 2013 basic information guide about the changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM), in order to assess the impact of these changes over the last two years.
This is the shortened Parent Tips version. Read the full length article "Staying Ahead of the Game: The DSM-5 and Autism"
In May 2013, the American Psychiatric Association released the 5th Edition of the DSM. The DSM has undergone regular revisions throughout the past fifty years and serves as a standard classification of mental disorders used by mental and behavioral health professionals as well as other physicians through the U.S. The diagnosis of Autism and related disorders has significant changes in this 5th edition. Many parents, individuals with Autism and related disorders, and advocacy groups have expressed concern regarding the implications of these changes.
In a nutshell, the (DSM-IV) diagnoses of Autistic Disorder, Pervasive Developmental Disorder – NOS, and Asperger’s Syndrome have been replaced by a single category entitled Autism Spectrum Disorder. The DSM-5 diagnosis of Autism Spectrum Disorder (ASD) is specified by four criteria:
- Persistent deficits in social communication and social interaction
- Repetitive patterns of behaviors, interests, or activities
- The presence of symptoms in early childhood
- Symptoms that impair daily functioning.
In addition, the DSM-5 includes a new diagnosis, Social (Pragmatic) Communication Disorder. This diagnosis addresses impairment of pragmatics and is diagnosed based upon difficulty in the social uses of verbal and nonverbal communication in a natural context and low social communication abilities which result in functional limitations. A third criterion requires that an ASD be ruled out (i.e., without restricted, repetitive patterns of behavior, interests and activities), and a fourth criterion requires symptoms present in early childhood.
What effect has the new DSM-5 classification criteria had upon individuals who were already diagnosed with Autism, Asperger’s Syndrome, or Pervasive Developmental Disorder – NOS?
The DSM-5 text states: “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s Syndrome, or pervasive developmental disorder not otherwise specified should be given the diagnosis of Autism Spectrum Disorder.”
However, a study by the CDC predicted lower estimates of children with ASD using the current DSM-5 criteria than using the previous DSM-IV-TR criteria. 20% who met the DSM-IV-TR criteria did not meet the DSM-5 criteria, and most were only missing one of the necessary symptoms. Children who met the DSM-IV-TR criteria for ASD were more likely to also meet DSM-5 criteria if they had a history of developmental regression, intellectual disability, diagnosis by a community provider, and/or special education services under an Autism disability code.
Is there evidence of changes in access to services since the use of DSM-5
Reporting agencies have not noticed post-DSM-5 changes in rates of service access and eligibility. Upon inquiry, many agencies indicated no reversing of diagnoses, with many of those with Asperger’s and PDD-NOS still being served. However, it is unknown whether this is the ‘calm before the storm’ and we have not yet experienced the consequences of the DSM-5. It is unknown how long agencies will uphold the DSM-IV diagnoses.
The federal Interagency Autism Coordinating Committee (IACC) has issued a statement urging concern about how practitioners are applying the DSM-5 criteria for ASD “so as to not have the unintended consequence of reducing critical services” and emphasized that individuals previously diagnosed with a DSM-IV diagnosis should retain the diagnosis and not be required to be re-evaluated to keep services.
While some individuals may lose their DSM-IV diagnosis, it appears to be less than originally predicted. A study by Young-Shin Kim and her colleagues (2014) showed that almost all children with a prior DSM-IV ASD diagnosis met DSM-5 diagnostic criteria for ASD, and most of those remaining met criteria instead for SCD. However, another review (Tsai, November 2014) revealed mixed findings of DSM-IV cases that did not qualify for a DSM-5 diagnosis of ASD.
What has happened to those individuals who were diagnosed with Asperger‘s Syndrome by the DSM-IV criteria?
The new DSM-5 no longer contains the diagnosis of Asperger’s Syndrome. Many clinicians are generally encouraging people who wish to continue to use the Asperger label to do so in order to retain their sense of identity as persons with Asperger syndrome. The intellectual and language abilities which distinguished Asperger’s syndrome from autistic disorder in DSM-IV are now indicated in DSM-5 by use of specifiers: ‘ASD without intellectual or language impairments.’ It is also possible that those previously diagnosed with Asperger’s may meet the new DSM-5 criteria for a Social Communication Disorder.
What has been the impact of the new DSM-5 ‘Social Communication Disorder’?
This SCD diagnosis should only apply to newly diagnosed individuals. Compared to a diagnosis of ASD, relatively little is known about the validity and reliability of a SCD diagnosis, and more research is needed. Until proven otherwise, professionals generally agree that the treatments for ASD and SCD should remain the same or similar to address the social communication and pragmatic language deficits common to both populations.
Are the new DSM-5 criteria based on contemporary neuroscience, genetics, or other biological factors?
No. The DSM is essentially a descriptive classification. It is not the DSM’s purpose or intent to base diagnostic criteria upon emerging neuroscience research.
Will my child's status with the Developmental Disabilities Administration (DDA) or the Autism Waiver be impacted by the new DSM categories?
At this time (October 2015), both DDA and the Maryland State Department of Education (MSDE, who manages the Autism Waiver) have stated that they do not follow the DSM and have their own eligibility requirements. As the future unfolds, DSM-5 changes may have some impact on the diagnosis given.
Will my child's IEP be affected if he or she has Asperger's or PDD-NOS?
Maryland’s special education Code of Maryland Regulations (COMAR) uses the verbatim definition of “Autism” that is in the Individuals with Disabilities Education Act (IDEA) which does NOT use the DSM-IV TR OR the DSM-5 definitions.
What should I do if I suspect that my child may not meet the DSM-5 criteria for an Autism Spectrum Disorder, despite a prior diagnosis?
Thus far, reporting agencies are indicating that those with former DSM-IV diagnoses are being “grandfathered in” and accepted for service eligibility without a reversal of any diagnoses. However, it is unknown whether this is the ‘calm before the storm’ and we have not yet experienced the consequences of the DSM-5. It’s too early to tell how long agencies will uphold the DSM-IV diagnoses or whether some insurance companies or school districts will request re-evaluations in the future. As such, it is still encouraged for families to stay ahead of the curve.
What can parents do to facilitate accurate diagnosis?
1. Document your child’s history and behaviors which impact daily functioning.
2. For parents of children who has DSM-IV diagnoses, it may be helpful to have your child re-assessed using the DSM-5 diagnostic criteria.
3. If your child is one that may be diagnosed with Social Communication Disorder, document any speech-language issues and advocate for speech services eligibility and additional social components to your child’s program.
© 2015 Pathfinders for Autism
DSM5 2015 update.pdf