One year ago a new edition of the Diagnostic and Statistical Manual of Mental Disorders, referred to as the DSM-5, was released. Mental health professionals rely on this publication to diagnose mental disorders and other conditions, and they use it as a source for the codes used in billing for their professional services. This new edition brought some controversial changes to the way in which autism spectrum disorders are diagnosed. Specifically, it did away with two ASD diagnoses found in the previous edition (DSM-IV). These diagnoses, Asperger Syndrome and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified), are the most likely of all ASD diagnoses to be present in the 2e community. Sharing many of the same characteristics, the two diagnoses have been regarded as milder forms of autism.
Even before the release of the fifth edition last May, researchers were warning of a decreased incidence of diagnosis using the revised criteria. For example, a re-analysis of a group of young (3 years and under) children previously diagnosed with autism indicated that only 35 percent would have been diagnosed with the newer criteria.
Since last May, the discussion has continued.
What Are Professionals Seeing?
Despite the controversy, some professionals are not seeing major changes — but perhaps not for the reasons you might think. For example, psychologist Ed Amend, of Lexington, Kentucky, says, “I haven’t yet seen kids with Asperger’s diagnoses being removed [from programs or services for which they previously qualified] primarily because the educational category is and has been ‘Autism or similar,’ so the child has been deemed to qualify.”
Psychologist Dan Peters, executive director of the Summit Center in California, has had a similar experience to Amend’s. “Most districts I’ve worked with have an ‘Autistic Spectrum’ category for special education qualification, so the change in medical diagnosis terminology doesn’t matter.”
Peters believes that if a child qualified for programs, services, etc., because of an Asperger’s diagnosis, the child will still be able to take advantage of them. He feels that most professionals and educators continue to use the term “Asperger’s,” which he thinks is more descriptive than “spectrum.”
However, says Peters, “I feel ‘spectrum’ captures the larger context, although it doesn’t give specifics about a child’s functioning like the diagnosis of Asperger’s has always done. I think many will use the current, proper label but hold on to the description of Asperger’s. I certainly am.”
Psychologist Deirdre Lovecky, director of the Gifted Resource Center of New England, reports that she has not yet had difficulty with the diagnostic changes. The reason? “I’ve started using the ICD-10 diagnostic codes (WHO, 1992; 2014), which still separate autism, Asperger Syndrome, and other developmental disorders.” Since Medicare, and most insurance companies, will soon require the use of ICD-10, she sees no reason not to use it now. An upcoming revision to the ICD codes, ICD-11, will likely also keep the distinctions, in Lovecky’s opinion.
The US Autism and Asperger’s Association, a nonprofit organization with the mission of providing the opportunity for those on the spectrum to “achieve their fullest potential,” provides information on its website about the ICD-11 criteria, currently in “beta” form. The Association states that it will retain the current subgroups and that under the heading Pervasive Developmental Disorder, unspecified, will come: autism spectrum disorder, childhood disintegrative disorder, social reciprocity disorder [Asperger syndrome], and Rett syndrome.
New Criteria: Helpful or Harmful?
Deirdre Lovecky thinks the changes in the DSM-5 are problematic for those diagnosed with Asperger’s or PDD-NOS. “It stems from whether one looks at the different diagnoses as part of a spectrum of autism, ranging from more to less severe with similar symptoms throughout the range, or one looks at autism as having different types as ADHD does,” says Lovecky. She notes that some studies have differentiated Asperger’s from autism, for example finding distinct differences in gray matter in the brain and differences in EEG patterns (Duffy, Shankarass, McAnulty, & Als, 2013; Yu, Cheung, Chua, & McAlonan, 2011).
Dan Peters believes it’s not the diagnosis of Asperger’s that makes it harder or easier for 2e kids, but the interpretation of IDEA and RtI that a child needs to be performing ‘below grade expected levels.’” With this requirement — which fails to take into account the social, sensory, and executive-functioning challenges that 2e kids with Asperger’s have — Peters feels these children will be underserved in terms of accommodations.
School psychologist Marlo Payne Thurman, a board member of the US Autism and Asperger’s Association, has done a qualitative study on autism in the population of gifted students in Colorado. As part of her research, she interviewed district-level educators about their opinions on this change and found differing opinions. One respondent thought the change could have a positive effect “because it will force us to look at the needs of the child for more individualized and strength-based instruction instead of just focusing on the diagnosis.” Another, says Thurman, felt the change was not good because “we already have a hard enough time in figuring out how to get them identified, and without [Asperger Syndrome] I worry that even more of these kids will go unnoticed. At least with the diagnosis, we had a red flag.”
“In theory,” Ed Amend points out, “the needs of a child, not the specific diagnosis or identification category, are supposed to drive the interventions. It’s great when that does happen.”
Before the DSM-5 was published, observers began worrying that the new criteria would exclude some children from being diagnosed with ASD. Since then, at least one study has estimated that 81 percent of those formerly diagnosed would keep the diagnosis.
And the other 19 percent? For those families, losing the ASD diagnosis can mean a loss of access to services and insurance reimbursement. However, Ed Amend points out that a diagnosis new with the DSM-5 — Social (Pragmatic) Communication Disorder, or SCD — might cover some of these children. Amend notes, “Though students may not get served under the autism category with an SCD diagnosis, they can be eligible for some services; and again, if they are determined by needs rather than diagnosis, appropriate services can still be provided.”
“However,” says Amend, “Those students with PDD-NOS and Asperger’s are the ones likely to be most affected in school. For example, the higher functioning youngster may not get the autism label, and with Asperger’s and PDD not being a diagnostic option, the student may not be deemed eligible.” However, he adds, “I haven’t seen that be the case yet.”
The organization Autism Speaks is currently surveying parents and clinicians in an attempt to ascertain just how many children may now find themselves without a diagnosis. Published accounts indicate that a substantial number of early respondents — up to a third — claimed they had lost access to services.
ASD, Asperger’s, HFA, PDD-NOS...
It seems that many people have come to perceive children with Asperger Syndrome as being intelligent. Does the elimination of that label make it harder once again for people to understand that someone with ASD can also be very bright? Dan Peters notes that the ASD diagnosis has a specifier “with or without intellectual impairment,” which certainly does not imply that a person with ASD is “smart.”
Ed Amend has another observation. “Interestingly,” he says, “schools did seem to be more open to putting kids with Asperger’s in gifted programs than kids with an ‘autism’ diagnosis.”
Deirdre Lovecky, who works mainly with gifted kids, says that most of the children she sees with an autism spectrum diagnosis have Asperger’s. A much smaller number of her clients have high-functioning autism (HFA), and are much more impaired. Of the HFA clients, she says, “They have or have had severe language differences. I think it’s important to keep using Asperger Syndrome as a description of these children’s problems.” Lovecky believes that in time the DSM-5 will be seen to be inadequate in describing the problems of this population.
The US Autism and Asperger’s Association has this position: “[We] will continue to support all individuals with Autism Spectrum Disorders and related disorders that are included in the ICD-10 under the Pervasive Developmental Disorder classification including AsThe DSM-5 and Asperger’s, concluded perger Syndrome as well as comorbidities associated with ASDs as well as all individuals diagnosed with ASD from the DSM.”
Interestingly, the National Institute of Mental Health has been moving toward a more objective stance to classifying disorders, focusing on biological underpinnings rather than just symptom description. At one point in 2013, the leader of the NIMH initiated a rather public spat with the backers of the DSM, announcing that the NIMH was withdrawing support for research based solely on DSM criteria.
A Chance to Be Heard
Currently, the NIMH is seeking public comment on the changes resulting from the revised diagnostic criteria for autism in the DSM. According to an NIMH statement, input is sought from “the scientific community, health professionals, self-advocates, and patient advocates” (that last one is you, parents) about:
2e Newsletter thanks Ed Amend, Deirdre Lovecky, Dan Peters, and Marlo Payne Thurman for their comments. Lovecky, Peters, and Thurman are members of the 2e Newsletter Editorial Advisory Board.
References and Acknowledgements
This article first appeared in the April, 2014, issue of 2e: Twice-Exceptional Newsletter and is used here with permission.
This article is provided as a service of the Davidson Institute for Talent Development, a 501(c)3 nonprofit dedicated to supporting profoundly gifted young people 18 and under. To learn more about the Davidson Institute’s programs, please visit www.DavidsonGifted.org.
The appearance of any information in the Davidson Institute's Database does not imply an endorsement by, or any affiliation with, the Davidson Institute. All information presented is for informational purposes only and is solely the opinion of and the responsibility of the author. Although reasonable effort is made to present accurate information, the Davidson Institute makes no guarantees of any kind, including as to accuracy or completeness. Use of such information is at the sole risk of the reader.