Drs. Blackwell and Culotta recently published an article for Pathfinders for Autism on “Parent Tips for Staying Ahead of the Game: The DSM-5 and Autism.”
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 article Parent Tips: The DSM-5 and Autism
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.
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 throughout the United States. The diagnosis of Autism and related disorders has significant changes in this 5th revision edition. These changes have been developed by the Neurodevelopmental Work Group of the American Psychiatric Association. Many parents, individuals with Autism and Autism Spectrum Disorders, and advocacy groups have expressed concern regarding the implications of these changes.
In a nutshell, the diagnoses of Autistic Disorder, Pervasive Developmental Disorder – NOS, and Asperger’s Disorder have been replaced by a single category entitled Autism Spectrum Disorder. The diagnosis of Autism Spectrum Disorder is specified by four criteria. The first requires persistent deficits in social communication and social interaction; the second, repetitive patterns of behaviors, interests, or activities; the third includes the presence of symptoms in early childhood; and the fourth requires that the symptoms limit and impair everyday functioning. Individuals meeting the diagnosis of Autism Spectrum Disorder are then assigned a severity level which includes Level 3, requiring very substantial support, Level 2, requiring substantial
support, and Level 1, requiring support.
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 Autism Spectrum Disorder be ruled out, and a fourth
criterion requires that the symptoms be 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?
Studies suggest that the new DSM-5 criteria will alter the composition of the autism spectrum, improving specificity but excluding a substantial portion of cognitively able individuals. Some feel this may be a large step backwards and may have negative implications for public health, service, eligibility, and research. The DSM-5 text states: “Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of Autism Spectrum Disorder.” While the DSM-5 committee
clearly stated that no individual previously diagnosed with autism should be required to be re-evaluated under the new DSM-5 criteria, some insurance companies and school districts are requesting such re-evaluations.
A study by the CDC published in JAMA (Maenner et al., March 2014) predicted lower estimates of children with ASD using the current DSM-5 criteria than using the previous DSM-IV-TR criteria. That is, over 80% of children who met the Autism and Developmental Disabilities Monitoring (ADDM) Network classification for ASD, which was based on DSM-IV-TR criteria, also had documented symptoms that met the DSM-5 criteria. The remaining 20% met the DSM-IV-TR criteria for ASD, but did not meet the DSM-5 criteria despite 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 provided by a community provider, and/or receiving special education services under an autism disability code. There were no gender or racial differences in the likelihood of meeting both the DSM-IV-TR and the DSM-5 criteria for ASD.
Is there evidence of changes in access to services since the transition to DSM-5?
Reporting agencies have not noticed post-DSM-5 changes in rates of service access and eligibility. Upon inquiry, many agencies indicated that there have been no reversing of diagnoses, with many 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 like the CDC 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 an ASD under DSM-IV should retain an ASD diagnosis for the purposes of qualifying for clinical and educational services and not be required to be re-evaluated under DSM-5 to keep services. There also is concern that the new severity ratings might be inappropriately used to prescribe services, although there is still no valid and reliable measures that can aid in the clinical assessment of symptom severity across the lifespan and various cultural backgrounds.
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 argued that a toddler who shows impaired social communication skills, but does not meet full criteria for ASD, be given a provisional diagnosis of ASD and an opportunity to benefit from ASD-specific early intensive intervention services aimed at improving those skills.
An ongoing online survey by Autism Speaks has drawn accounts of children losing behavioral therapy and special education services after their DSM-IV ASD diagnosis was changed to a DSM-5 SCD diagnosis.
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.
- Of the children previously diagnosed with DSM-IV-TR PDD-NOS, 71% would now be diagnosed with DSM-5 ASD.
- Of those previously diagnosed with DSM-IV-TR Asperger disorder, 91% would now be diagnosed with DSM-5 ASD.
- Of those previously diagnosed with DSM-IV-TR autistic disorder, 99% would now be diagnosed with DSM-5 ASD.
Another review (Tsai, November 2014) of 72 published prevalence studies of DSM-IV ASD and 61 studies of DSM-5 ASD reported that 9% to 54% (median of 30%) of DSM-IV cases did not qualify for DSM-5 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. While several studies and advocacy groups suspected that individuals diagnosed with Asperger’s syndrome will no longer meet criteria for an Autism Spectrum Disorder, the intellectual and language abilities which distinguished Asperger 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 individuals previously diagnosed with Asperger’s may meet the new DSM-5 criteria for a Social Communication Disorder. Further, some states limit access to certain services by people with an Asperger syndrome diagnosis, but will provide them to people with an ASD diagnosis.
One brief report by Ohan and colleagues (June 2015) revealed that the ASD label did not increase negative perceptions or stigma, at least amongst the general public. Similarly, Brosnan and Mills (June 2015) found that college students had more positive and less negative affective responses towards a peer’s autism spectrum behaviors if they were informed that the peer had Asperger’s or ASD rather than being a typical college student, suggesting some benefit for students disclosing their diagnosis at college.
What has been the impact of the new DSM-5 diagnosis of Social (Pragmatic) Communication Disorder?
Researchers anticipate that individuals getting assessed for the first time using the new DSM-5 who display insufficient signs to meet the criterion of ‘restricted, repetitive patterns of behavior, interests and activities’ (i.e., PDD-NOS in DSM-IV) OR individuals who display problems using verbal and nonverbal communication for social purposes, without delayed cognition (i.e., Asperger’s Disorder in DSM-IV), may be moved into the new category of ‘Social (pragmatic) Communication Disorder’ (SCD) (Lai, Lombardo, Chakrabarti, & Baron-Cohen, 2013).
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 on SCD. Clinicians have generally agreed that individuals with SCD would likely benefit from services typically provided to individuals with autism; however, as of yet, there are no specific treatment guidelines for SCD. 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, including speech-language therapy, Applied Behavioral Analysis, Pivotal Response Training, Early Start Denver Model, social skills groups, and Cognitive Behavioral Therapy.
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. When the DSM began, there were few tools to study brain structure, neurochemistry, or other aspects of brain development. At some point in the future, neuroscience may play a more significant role in forming diagnostic criteria.
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. DDA does not anticipate that changes in diagnoses will impact DDA waiver eligibility (DDA waiver is NOT the same as the Autism Waiver). DDA eligibility has been based on adaptive functioning since the creation of the DDA waiver in the 1980s. As such, it is not the diagnosis that is important but the degree and kinds of support that individuals require to live in the community. As the future unfolds, DSM-5 changes may have some impact on the diagnosis given to individuals seeking clinical evaluation. For questions about DDA eligibility, please contact your Regional DDA Office. The Autism Waiver will continue to use the definitions from the DSM-IV Text Revision (TR) of 299.00 and 299.80. For questions regarding the Autism Waiver, please call Marjorie Shulbank, Section Chief, Family Support Services, for the MSDE Division of Special Education and Early Intervention Services at 410-767-0947.
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 either the DSM-IV TR OR the DSM-5 definition of autism. For questions regarding the impact on your child’s IEP, please contact Marjorie Shulbank, Section Chief, Family Support Services, for the MSDE Division of Special Education and Early Intervention Services at 410-767-0947.
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 and access 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 like the CDC will uphold the DSM-IV diagnoses. As such, it is still encouraged for families to stay ahead of the curve.
What can parents do to facilitate accurate diagnosis?
Document your child’s history so that if something happens to you there will be a record of symptoms your child had in the past. Keep a folder with all previous professional evaluations in one place in case your child needs to be re-assessed using the new criteria.
For parents seeking a new diagnosis, recognize that a toddler may not obviously meet the new criteria. Be sure that both the ADOS-2 and ADI-2 are used along with a detailed history, if at all possible but keep in mind that these assessments will likely be updated to reflect the new criteria. If that isn’t possible, be sure to make a complete list before the evaluation of all behaviors your child exhibits. Note ways in which these behaviors impact your child’s functioning.
For parents of children who has DSM-IV diagnoses, it may be helpful to have your child re-assessed by a mental health provider or physician using the DSM-5 diagnostic criteria, with close attention and documentation of the functional impact and levels of severity of your child’s Autism Spectrum Disorder upon domains of communication, socialization, daily living skills, and academic functioning. Individuals with normal cognitive abilities and more severely impacted functional skills may well meet the DSM-5 criteria.
If your child is one that may be diagnosed with Social Communication Disorder, document any speech issues that your child has and ask for a dual diagnosis along with an established speech language disorder in order to leave no question about speech services eligibility. Use the SCD diagnosis to advocate for additional social components to your child’s program.
Where can I go to find out more information on how the DSM-5 changes may impact my son or daughter?
Consultation with your mental health provider is recommended in order to clarify current diagnostic formulations and levels of adaptive functioning. The American Psychiatric Association’s website contains the new DSM-5 criteria.
– See more at: http://www.pathfindersforautism.org/articles/view/staying_ahead_of_the_game_the_dsm-5_and_autism#sthash.wtzeiN5y.dpuf