By the time the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is published in May 2013, 13 years will have passed since the last edition. Each new edition of the DSM, also referred to as the “book of human troubles” (Carey, 2008), engenders interesting questions about the ever-increasing number of diagnoses as well as a commentary on the influence of the DSM and its influence on the public. The DSM has influence beyond a mere diagnostic manual; it is both a “medical guidebook and a cultural institution” (Carey, 2008, para. 5) that not only assists in diagnosing and planning treatment but also provides the basis for insurers to offer reimbursement for treatment.
Changes in the Definition of Autism
Families of people with autism spectrum disorders (ASDs) are particularly interested in the new DSM-5 changes due to major revisions in autism-related diagnoses. The most obvious change will be the deletion of the pervasive developmental disorders (PDD), including Asperger’s disorder; both will be subsumed into the category of ASDs.
The PDD category was a DSM, fourth edition, text revision (DSM-IV-TR) (American Psychiatric Association [APA], 2000) classification that described sustained, behaviorally defined brain disorders (usually diagnosed by preschool). The PDD category included the subcategories of autistic disorder, PDD not otherwise specified, Rett’s disorder, Asperger’s disorder, and childhood disintegrative disorder. The earlier fourth edition of the DSM (DSM-IV) (APA, 1994) held the most stringent diagnostic standards, requiring a total of six criteria from three major categories of the symptoms below:
- Arrested social skills. Affected children manifest withdrawal and low interest in others. Although older children may develop an interest in friendships, demonstrations of reciprocity are rare due to a lack of understanding about social cues, thus inhibiting expanded friendships.
- Impaired verbal and nonverbal communication. Speech and language delays are common; some children have no speech ability at all. Pitch and intonation are noticeably different with stereotypical repetitiveness of words or phrases; facial expressions may also be limited.
- Restricted and repetitive behaviors and interests. Individuals with autistic disorder often have a preoccupation with narrow interests such as numbers or mechanical objects. Additional features often include repeated movements such as flapping, spinning, and twisting, serving to provide for specific stimulation, which may aid in blocking other sources of stimuli.
The DSM-IV-TR criteria for autistic disorder required only four criteria from the three categories and all had to occur before age 3. Asperger’s disorder had the same diagnostic criteria as autistic disorder but without communication impairment. PDD not otherwise specified (NOS) had the least rigorous requirements for diagnosis. A person need only display severe social impairment in the development of reciprocal social interaction associated with communication deficits or stereotyped behaviors with no specific number of symptoms needed (APA, 2000).
The DSM-5 Neurodevelopmental Disorders Work Group was a team of clinicians and researchers who examined the scientific literature and research, conducted field trials, and reviewed feedback from others in the scientific community and the public to formulate the content for the new DSM. Through their work, there have been many changes to the diagnosis of autism, but the biggest may be the singular diagnosis of ASD. The DSM-5’s criteria will incorporate multiple diagnoses from the DSM-IV (Asperger’s disorder syndrome, autistic disorder, childhood disintegrative disorder, and PDD-NOS) into ASD.
The DSM-5 Neurodevelopmental Disorders Work Group found that the diagnostic criteria for DSM-IV-TR PDDs, particularly PDD-NOS and Asperger’s disorder, were inconsistent and varied across assessment locations and providers (Gibbs, Aldridge, Chandler, Witzlsperger, & Smith, 2012). To consistently and accurately diagnose autism, the three categories of impairment for autistic disorder used in the DSM-IV-TR (social interaction, communication, and fixated interests in repetitive behaviors) will be reduced to two areas of focus in the DSM-5: a social-communication domain and a behavioral domain, which includes fixated interests and repetitive behaviors.
The DSM-IV-TR’s social and communication domains have been combined for the DSM-5, as population-based and twin studies of ASD have demonstrated that difficulties in social interaction and communication were part of the same domain (Ronald et al., 2010; Rosenberg et al., 2009). The proposed criteria that must be met for the DSM-5 are: (a) persistent deficiencies in social communication and interaction across settings; (b) restricted and repetitive behaviors, interests, or activities; (c) symptoms must be present early in childhood (but may be delayed to a later age when social demands exceed the limits of the child); and (d) symptoms limit and impair functioning daily. Although the DSM-IV-TR required only one symptom of fixed interests and repetitive behaviors for diagnosis, the DSM-5 will require at least two (APA, 2000; “Proposed DSM-5 Criteria,” 2012).
The DSM-IV-TR required that symptoms must have occurred before age 3. The new guidelines do not specify an age, allowing consideration that individuals with autism with higher functioning may not have displayed impairment until their social demands were increased by formalized education systems or other changes in environment. Conversely, with behavioral interventions or improved environment, some of the symptoms of autism may improve or abate. Under the DSM-5 criteria, because a diagnosis may be made by history, even though an individual no longer exhibits behavioral criteria, the ASD diagnosis is still retained. The APA is considering adding specifiers such as “in remission” that would clarify the diagnosis further (Swedo, 2012). This is an improvement from the DSM-IV-TR, which did not allow consideration of past symptomatology.
An added modification in the DSM-5 is the explanation of criteria and the use of examples, two education points not included in its previous manuals. This change should decrease misinterpretation and therefore misdiagnosis with the hope that more people with autism will receive the correct diagnosis.
Implications for Nurses
The changes to the diagnosis of autism in the DSM-5 are intended to improve specificity, validity, and reliability of diagnosis. There are concerns about how these changes will affect individuals who had PDD diagnoses. One of the concerns is that many people who were formerly diagnosed with autism will not meet the new criteria for ASD. Studies may bolster this concern, especially for individuals on the higher-functioning end of the autism spectrum. For example, Gibbs et al. (2012) found that 23.4% of children who received a DSM-IV-TR diagnosis will not meet DSM-5 ASD criteria; the majority of those not meeting the new standards are the PDD-NOS (50%) and Asperger’s disorder (16.6%) recipients. Similarly, McPartland, Reichow, and Volkmar (2012) indicated that 39.4% of individuals with an autism disorder would not meet DSM-5 criteria for ASD, with the majority again coming from the PDD-NOS and Asperger’s groups. David J. Kupfer, chair of the DSM-5 Task Force, believes the numbers may be closer to 5% to 10%, but he agrees that some children will likely lose their diagnosis on the autism spectrum (Falco, 2012). It is possible—even likely—those children losing the PDD-NOS diagnosis without acquiring an autism diagnosis will lose insurance benefits.
In contrast to the concern that individuals will lose their autism diagnoses, some experts believe that more children will now receive an ASD diagnosis, as the concrete criteria of specific age has been eliminated (Falco, 2012). The DSM-5 will also allow for the ASD diagnosis based not just on current symptoms but on an individual’s history, something the former DSM did not consider.
Because patient education is one of the hallmarks of nursing care, it is important for nurses to help families, patients, and non-psychiatric health care providers become acquainted with the new ASD criteria. Psychiatric nurses can help families understand that the changes in the DSM-5 may alleviate some of the burden on educational and social services systems by decreasing the number of misdiagnoses and providing specific care related to severity and symptom pathology instead of blanket treatments that may not be appropriate for higher-functioning individuals.
It will be important for nurses to support and educate families who believe that the DSM-5 changes to ASD will have a negative influence on treatment options for individuals with autism, specifically those with Asperger’s disorder or PDD-NOS losing coverage of their services. School-aged children, special education, and early intervention programs are governed by federal law through the Individuals with Disabilities Education Act (IDEA, 1990), which defines disability on the basis of need, not diagnosis. Although autism has been an IDEA qualifier since 1990, the specific diagnoses of Asperger’s disorder and PDD never were; instead, students with these diagnoses were eligible for special education due to evident needs based on other health impairments. Section 602(3)(A)(i) of the IDEA law specifies conditions such as emotional disturbance, speech and language impairments, and learning disabilities as other health impairments.
Change is on the way with the new DSM-5 diagnostic criteria for ASD. Education and advocacy for people with ASD will continue to be required. For example, nurses could offer to conduct continuing education workshops for parents’ and teachers’ groups, highlighting both the information in this article as well as other articles in this special issue on the DSM-5. Additionally, school nurses might appreciate a workshop offering continuing education credit on DSM-5 diagnostic changes. Exploring the availability of community support groups for parents and families and disseminating them via a central website such as http://psychiatricnursing.com would be another important service. Finally, keeping track of the most frequently asked questions would serve to improve future presentations.
- American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
- American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
- Carey, B. (2008, December18). Psychiatrists revise the book of human troubles. New York Times. Retrieved from http://www.nytimes.com/2008/12/18/health/18psych.html?pagewanted=print
- Falco, M. (2012, December3). Psychiatric association approves changes to diagnostic manual. Retrieved from http://www.cnn.com/2012/12/02/health/new-mental-health-diagnoses/index.html
- Gibbs, V., Aldridge, F., Chandler, F., Witzlsperger, E. & Smith, K. (2012). Brief report: An exploratory study comparing diagnostic outcomes for autism spectrum disorders under DSM-IV-TR with the proposed DSM-5 revision. Journal of Autism and Developmental Disorders, 42, 1750–1756. doi:10.1007/s10803-012-1560-6 [CrossRef]
- Individuals With Disabilities Education Act, 20 U.S.C. § 1400 (1990).
- 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, 368–383. doi:10.1016/j.jaac.2012.01.007 [CrossRef]
- Proposed DSM-5 criteria for autism spectrum disorders. (2012). Retrieved from the Simons Foundation Autism Research Initiative website: https://sfari.org/news-and-opinion/news/2012/proposed-dsm-5-criteria-for-autism-spectrum-disorders
- Ronald, A., Butcher, L.M., Docherty, S., Davis, O.S., Schalkwyk, L.C., Craig, I.W. & Plomin, R. (2010). A genome-wide association study of social and non-social autistic-like traits in the general population using pooled DNA, 500 K SNP microarrays and both community and diagnosed autism replication samples. Behavioral Genetics, 40, 31–45. doi:10.1007/s10519-009-9308-6 [CrossRef]
- Rosenberg, R.E., Law, J.K., Yenokyan, G., McGready, J., Kaufmann, W.E. & Law, P.A. (2009). Characteristics and concordance of autism spectrum disorders among 277 twin pairs. Archives of Pediatric and Adolescent Medicine, 163, 907–913. doi:10.1001/archpediatrics.2009.98 [CrossRef]
- Swedo, S.E. (2012, July10). An update on DSM-5 recommendations for autism spectrum disorder and other neurodevelopmental disorders. [Video file.] Retrieved from http://www.you-tube.com/watch?v=PAQp2aNm2T4&feature=youtu.be