Parents, educators, and clinicians interested in people with autism have faced the upcoming release of DSM 5 (in May 2013) with a variety of reactions ranging from apathy to outrage. As has been widely reported, the DSM 5 system includes only the global diagnosis, Autism Spectrum Disorder (see Table 1 below), foregoing the familiar subgroups (i.e., Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder, Rett’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified).
Many clinicians have assumed that the shift to DSM 5 will have little practical impact; they assume that any person who is currently appropriately diagnosed with one of the DSM IV Pervasive Developmental Disorders will meet criteria for the DSM 5 diagnosis of Autism Spectrum Disorder.
However, over the past two years, some data have called that assumption into question. Investigations of the proportion of individuals with a DSM-IV TR diagnosis of a Pervasive Developmental Disorder who will not meet DSM 5 criteria for Autism Spectrum Disorder have varied considerably. Using an early draft of the DSM 5 criteria, Matilla et al. (2011) reported that 54% of those meeting DSM-IV TR criteria failed to meet the DSM 5 criteria. McPartland et al. (2012), using what was likely to be the final criteria, found the number to be just under 40%. Matson et al. (2012b) reported just under 48% reduction in a sample of toddlers, and in a sample of adults with autism and intellectual disability the reduction was about 37% (Matson et al., 2012a). At the lower end of the range, Huerta et al. (2012) found that 9% were eliminated under DSM 5. In the DSM 5 field trials, although the numbers of cases were small, one site found no reduction in diagnoses while a second site reported about a 15% reduction, but those children in the sample who were given the new DSM 5 diagnosis, Social Communication Disorder, more than overcame that reduction (Gever, 2012).
Of particular interest is that the body of research suggests that some subpopulations with current autism spectrum disorder diagnoses may be at higher risk for being de-diagnosed, namely, females, individuals with more significant cognitive / adaptive / behavioral impairment, individuals with a previous diagnosis of PDD-NOS, and, most concerning, toddlers. In a newly published report, Barton and colleagues (2013) examined several different algorithms for the DSM-5 criteria in order to identify one that maintained high sensitivity (correctly identifying children with ASD) and acceptable specificity (correctly identifying children without ASD). They concluded that, in their sample of toddlers (n=422; Mean age = 25.76 months), the best algorithm required meeting only two (rather than three) of the DSM-5 social communication criteria and one (rather than two) of the repetitive behavior criteria; in addition, the algorithm adopted a relaxed threshold for meeting the repetitive behavior criteria, meaning that a child’s repetitive behaviors could be less marked or less prototypical and still meet a criterion. In sum, the substance of the Barton et al. (2013) paper suggested that the DSM-5 symptom criteria for ASD, as currently conceptualized, are too restrictive to be acceptable for use with young children.
The implementation of DSM-5 criteria has important implications for the special education system. A recent paper suggested that those who fail to meet DSM-5 criteria for ASD, and who are given a diagnosis of Social Communication Disorder instead, may face challenges with respect to eligibility for appropriate educational services: “Changing the current diagnosis of PDD-NOS to a ‘‘Social Communication Disorder’’ focused on language pragmatics in the DSM-5 may restrict eligibility for IDEA programs and limit the scope of services for affected children“ (Grant & Nozyce, 2013).
How Virginia school divisions will respond to the shift in diagnostic criteria remains to be seen. Students whose diagnosis changes from PDD-NOS to Social Communication Disorder, for example, may simply have their disability category changed from Autism to Other Health Impaired with no changes to IEP goals or services.
However, given the substantial variability in how local school divisions interpret and implement special education regulations, some guidance from the Commonwealth’s Department of Education is needed to ensure that students receive appropriate educational accommodations and interventions.
Barton, M. L., Robins, D. L., Jashar, D., Brennan, L., & Fein, D. (2013). Sensitivity and specificity of proposed DSM-5 criteria for autism spectrum disorder in toddlers. Journal of Autism and Developmental Disorders, 43(5), 1184-1195. doi:10.1007/s10803-013-1817-8 Gever , J. (May 08, 2012). Autism criteria critics blasted by DSM-5 leader. MedPage Today. http://www.medpagetoday.com/MeetingCoverage/APA/32578
Grant, R., & Nozyce, M. (2013). Proposed changes to the american psychiatric association diagnostic criteria for autism spectrum disorder: Implications for young children and their families. Maternal and Child Health Journal, 17, 86–592. doi:10.1007/s10995-013-1250-9
Matson, J. L., Kozlowski, A. M., Hattier, M. A., Horovitz, M., & Sipes, M. (2012a). DSM-IV vs DSM-5 diagnostic criteria for toddlers with autism. Developmental Neurorehabilitation, 15(3), 185-190. doi:10.3109/17518423.2012.672341
Matson, J. L., Belva, B. C., Horovitz, M., Kozlowski, A. M., & Bamburg, J. W. (2012b). Comparing symptoms of autism spectrum disorders in a developmentally disabled adult population using the current DSM-IV-TR diagnostic criteria and the proposed DSM-5 diagnostic criteria. Journal of Developmental and Physical Disabilities, 24(4), 403-414. doi:10.1007/s10882-012-9278-0
Mattila, M. L., Kielinen, M., Linna, S. L., Jussila, K., Ebeling, H., Bloigu, R., . . . Moilanen, I. (2011). Autism spectrum disorders according to DSM-IV-TR and comparison with DSM-5 draft criteria: An epidemiological study. Journal of the American Academy of Child and Adolescent Psychiatry, 50(6), 583-592.e11. doi:10.1016/j.jaac.2011.04.001
McPartland, J. C., Reichow, B., & Volkmar, F. R. (2012). Sensitivity and specificity of proposed DSM-5 diagnostic criteria for autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 51(4), 368-383. doi:10.1016/j.jaac.2012.01.007
Table 1. Autism Spectrum Disorder (Draft DSM-5 symptom criteria)
- Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
- Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.
- Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
- Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people.
- Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
- Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
- Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
- Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
- Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
- Symptoms together limit and impair everyday functioning