PFA 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 April 2020 update to our 2015 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 several years.
In May 2013, the American Psychiatric Association released the 5th Edition of the DSM. The DSM has undergone regular revisions throughout the past fif
ty 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(DSM-IV) diagnoses of Autistic Disorder, Pervasive Developmental Disorder – NOS (PDD-NOS), and Asperger’s Syndrome have been replaced by a single category entitled Autism Spectrum Disorder.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:
A. Persistent deficits in social communication and social interaction
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
B. Repetitive patterns of behaviors, interests, or activities
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
C. Symptoms present in early childhood development
D. Symptoms impair daily functioning
What are the DSM-5 specifiers for the ASD diagnosis?
In order to better characterize the diagnosis, these specifiers allow for additional assessment of language level, intellectual disability, any known genetic causes of autism, and autism-associated medical conditions:
- With or without accompanying language impairment
- With or without accompanying intellectual impairment
- Associated with a known medical or genetic condition or environmental factor (e.g. fragile X syndrome, Rett syndrome)
- Associated with another neurodevelopmental, mental, or behavioral disorder (e.g. seizures, anxiety, gastrointestinal disorders, disrupted sleep)
- With catatonia
What are the DSM-5 levels of severity for the ASD diagnosis?
To further distinguish clinical profiles of the ASD broader category, the severity assessment scale (Levels 1-3) is based on the level of support needed for daily functioning:
- Level 1: Requiring support – Without supports in place, deficits in social communication cause noticeable impairments and inflexibility of behavior causes significant interference with functioning in one or more contexts.
- Level 2: Requiring substantial support – Marked deficits in verbal and nonverbal social communication skills apparent even with supports in place with limited initiation of social interactions and reduced/abnormal responses to social overtures from others; restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts.
- Level 3: Requiring very substantial support – Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning with very limited initiation of social interactions and minimal response to social overtures from others; restricted/repetitive behaviors markedly interfere with functioning in all spheres.
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 DSM-5 classification criteria had upon individuals who were already diagnosed with Autistic Disorder, Asperger’s Syndrome, or PDD-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.” Nonetheless, one review (Tsai, November 2014) revealed findings that did not support the conceptualization of these three DSM-IV diagnoses as a single category of ASD. This review reported mixed findings regarding the percent (9% to 54%) of DSM-IV cases that did not qualify for a DSM-5 diagnosis of ASD.
A 2013 study by the CDC indicated that children who met the DSM-IV-TR criteria for ASD were more likely to 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. The 2013 CDC study also predicted lower estimates of children with ASD using the current DSM-5 criteria than using the previous DSM-IV-TR criteria. However, a study by Young-Shin Kim and her colleagues (2014) showed that most children with a prior DSM-IV diagnosis of Autistic Disorder, Asperger’s Syndrome, or PDD-NOS met DSM-5 diagnostic criteria for ASD, and of those remaining almost all met criteria instead for SCD.
Several studies have indicated a percentage between 50 and 75% of individuals maintaining an ASD diagnosis under DSM-5 criteria, with the greatest decreases among high-functioning populations or previous diagnoses of PDD-NOS or Asperger’s Syndrome (Kulage et al. 2014; Young and Rodi 2014; Smith et al. 2015). In a recent study (de Giambattista et al., 2019), 97.3% met DSM-5 criteria for ASD; the remainder, who did not meet the full criteria, consisted exclusively of subjects with Asperger’s Syndrome.
Findings from the 2016 ADDM Network indicate considerable variability in ASD prevalence across U.S. communities and higher ASD prevalence than previous estimates from the ADDM Network. The latest ASD prevalence estimate for 2016 is 18.5 per 1,000 8-year-old children or 1 in 54 children. This is approximately 10% higher than the 16.8 prevalence estimate the 2014 ADDM Network and approximately 175% (2.8 times) higher than the first estimates reported by the ADDM Network in 2000 and 2002. It is unclear exactly how much of this marked increase in ASD diagnosis is due to: a broader definition of ASD, better efforts in diagnosis, a true increase in the number of people with an ASD, differences in community practices for identifying ASD, changes in the data available to the surveillance system, and/or other unknown factors.
The 2016 ADDM Network also provided insights into racial, ethnic, and socioeconomic patterns. For the first time, no overall difference in ASD prevalence was reported between black and white children, although disparities in early intervention and identification persist for black children. ASD prevalence among Hispanic children continues to be lower than among white or black children. Black and Hispanic children with ASD were evaluated at older ages than white children and were more likely to have intellectual disability. Black children with intellectual disability and ASD also received diagnoses at older ages than did white children with intellectual disability and ASD, which might limit opportunities to receive services that could improve their outcomes and quality of life. There was a positive association between socioeconomic status (SES) and ASD prevalence, which suggests ASD might be more readily identified in high-SES communities or among populations with good access to services. This finding highlights the need to facilitate early and equitable ASD diagnosis and services for lower-SES groups.
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.
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.
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’s label to do so in order to retain their sense of identity as persons with Asperger’s 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 (SCD).
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 (April 2020), 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 can parents do to facilitate accurate diagnosis?
1. Document your child’s history and behaviors which impact daily functioning.
2. If your child is one that may be diagnosed with Social Communication Disorder, document any speech-language issues and advocate for speech-language services eligibility and additional social components to your child’s program.
3. For parents of children who have DSM-IV diagnoses, it may be helpful to have your child re-assessed using the DSM-5 diagnostic criteria.
There are new CPT codes for (neuro)psychological testing since 2019 to support parent’s reimbursement:
In summary, the current DSM-5 diagnosis of Autism Spectrum Disorder provides specifiers and levels of severity to better characterize the broader diagnosis and to distinguish clinical profiles based on level of support needed. Findings are mixed regarding the percent of those with a former DSM-IV diagnosis (Autistic Disorder, Asperger’s Syndrome, or PDD-NOS) that qualify for a DSM-5 ASD diagnosis, and many who did not qualify instead met criteria for SCD. Recent data indicate a marked increase in ASD diagnosis (1:54). Scientists have yet to clarify factors driving escalating prevalence rates. Research regarding genetic risk factors, neuroanatomical profiles, the need for early developmental screening, and assessment of intervention efficacy continues to inform and enlighten our understanding of this neurodevelopmental disorder.
PFA Zoomcast Interview by Rob Long: Dr. Vincent Culotta and Dr. Melissa Blackwell Drs. Culotta and Blackwell discuss diagnosing Autism Spectrum Disorder (ASD)and the importance of intervention following a diagnosis. They also address what parents and caregivers can do to facilitate accurate diagnosis and treatment.
© 2020 Pathfinders for Autism