One of the most contentious changes in the soon-to-be released fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-V) is the American Psychiatric Association’s decision to drop Asperger’s syndrome from the manual and place it under the category for autism spectrum disorders (ASD).
In a statement, the American Psychiatric Association said, “The [new] criteria will incorporate several diagnoses from [the] DSM-IV, including autistic disorder, Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder (not otherwise specified) into the diagnosis of autism spectrum disorder for [the] DSM-5 to help more accurately and consistently diagnose children with autism.”
Counselors and others are split on the impact this decision will have, both on mental health professionals and individuals with Asperger’s.
Melinda Gibbons, an associate professor of counselor education in the educational psychology and counseling department at the University of Tennessee, says autism has become more recognized and understood by the general public.
“There is more publicity about autism in the media, and there has been a significant increase in the numbers of children diagnosed with autism,” says Gibbons, a member of the American Counseling Association. “I think the public still has only a vague understanding of the specifics of autism, but many people can now describe the disorder in generalities and/or point to someone they know with the disorder.”
Gibbons has also witnessed improved understanding among mental health professionals. “The amount of research on autism and autism spectrum disorders has increased dramatically,” she says. “Clinicians and teachers working with the K-12 population see the need to understand ASD in their students and help them be successful in school and beyond.”
Jamie Schutte, a professor at the University of Pittsburgh in the Department of Rehabilitation Science and Technology, believes this has to do with the increase of the disorder itself among youths in recent years.
“In 2000, the Centers for Disease Control (CDC) estimated autism spectrum disorder prevalence at 6.7 per 1,000, or 1 in 150 children [who are] 8 years old,” says Schutte, an ACA member. “In 2008, the prevalence was 11.3 per 1,000, or 1 in 88 children aged 8 years. No one knows the cause of this increase in prevalence, but it is definitely happening.”
Schutte adds that the representation of ASD has also become more prevalent in popular culture, including in novels such as The Curious Incident of the Dog in the Night-Time by Mark Haddon and on TV with characters such as Dr. Dixon on Grey’s Anatomy and Max Braverman on Parenthood, “which,” she says, “has increased awareness on the part of the pubic and media.”
That same level of broad understanding doesn’t necessarily extend to Asperger’s, however, according to Gibbons. “There is much less media attention on [Asperger’s] and, many times, people combine it with autism,” she says, “not understanding the differences between the two diagnoses.”
“Asperger’s is a relatively new diagnosis, only showing up in the DSM-IV for the first time as an actual diagnosis,” Gibbons says. “As a result, the number of students diagnosed with Asperger’s has increased tremendously, and we are now starting to see college students and young adults with this diagnosis. Adding Asperger’s as a diagnosis gave clinicians clarity in diagnosing a disorder for clients who showed some signs of autism-like symptoms but demonstrated average to above average intelligence and normal language development.”
Gibbons thinks dropping Asperger’s from the DSM will make it harder to advocate for clients because they will not have a specific Asperger’s diagnosis.
“In particular, school counselors might experience more difficulties placing students in appropriately difficult classes once ASD is used instead of Asperger’s,” Gibbons says. “Students with Asperger’s typically demonstrate average to above average intelligence and usually are fully integrated into mainstream classes. They receive supports such as physical therapy, social skills instruction and special rooms for times when they feel overstimulated, but they also tend to do very well in classes and often enter into honors classes. This pathway might be more difficult to maneuver with the ASD diagnosis.”
Additionally, she believes the new “lumped” diagnosis will make it difficult to distinguish between children whom previously were given the Asperger’s diagnosis – now to be called mild ASD – and those with mild autism symptoms – what used to be called high-functioning autism.
“These two groups often differ on intellectual disability status and language development,” Gibbons says, “but might eventually be classified with the same disorder status using the new ASD diagnosis.”
Schutte, on the other hand, believes the change in Asperger’s classification will actually reduce diagnostic confusion.
“I think this is a good idea,” she says. “The DSM-IV [categorizes] autism, Asperger’s, pervasive developmental disorder not otherwise specified and childhood disintegrative disorder, [which] caused confusion because they were not well defined. Even experienced clinicians could disagree on the ‘correct’ diagnosis. In addition, there were other diagnostic terms floating around, including autism spectrum disorder, atypical autism and high-functioning autism, that were not defined in the DSM but seemed to be clinically relevant. So, there was little consistency, which is confusing for everyone, including counselors, clients, families and researchers.”
Gibbons says she does see some positives to the reclassification — namely that it simplifies the diagnosis and may help with third-party reimbursement and distribution of services.
“On the other hand,” she says. “I think people with Asperger’s differ substantially from people with autism, and combining the two diagnoses may lead to overlooking these differences in favor of the similarities between the two. Also, in terms of identity for the students, I think this is a major change with possible negative consequences.”
Schutte believes development of the new all-inclusive category of ASD “and providing recommendations for severity based on the amount of support needed makes sense. It also makes sense to combine the ‘social’ and ‘language’ diagnostic criteria because language is largely a social behavior. Also, I’ve worked with many adults with Asperger’s diagnoses who didn’t experience delays in the development of language but still had some language abnormalities, including idiosyncratic speech and unusual prosody.”
However, she adds, “I think some clients, especially those who identify as having Asperger’s, will be disappointed with the change or resistant to let go of the diagnosis, because they have developed a positive identity around it. The diagnosis of Asperger’s may carry less stigma than autism, so parents and clients may have preferred it. There has also been some advocacy work done around Asperger’s, for example, the website Aspies for Freedom.”
Gibbons echoes this statement, worrying that misconceptions may arise as a result of lumping children with Asperger’s in with children who have autism.
“Kids with Asperger’s are often seen as college-going, high-achieving students,” she says. “Kids with autism, on the other hand, often have less positive outlooks. I am generalizing here, but losing the Asperger’s diagnosis and combining it with ASD may create changes in others’ perspectives of these students. Also, I think there will be a change of identity for older clients with Asperger’s. Knowing your diagnosis can be a helpful piece of self-understanding, and changing the diagnosis label can be potentially damaging for these clients.”
Gibbons thinks it will be important for counselors to talk to clients with Asperger’s and their families about the impending change. This is especially true with older clients, she says, “who already have some understanding of the Asperger’s diagnosis. In addition, I think counselors need to advocate for their students with Asperger’s so that schools and others understand their strengths – normal language development and average to above average intelligence – and their differences from others on the autism spectrum.”
Although the change might affect the way things are processed through insurance, Schutte does not believe dropping a specific diagnosis for Asperger’s from the DSM should alter much in terms of everyday life. “Treatment plans are based on the individual and not the diagnosis,” she says, “so despite the change in diagnosis, services should continue on as planned. Individuals and families who have concerns about the change in the diagnosis should talk to their counselors, who can, hopefully, address specific concerns and assuage fears about the change.”
“Diagnosis is important for a variety of reasons,” she continues, “including implications for treatment, public policy, planning for needs and development of services, granting access to resources to qualified recipients, and individual attitudes toward and adjustment to disability. However, at the end of the day, a diagnosis is only a word. Everyone with ASD is different, and so regardless of diagnosis, an individualized approach to therapy that incorporates the individual’s goals, environment, strengths and weaknesses is going to be the best approach.”
For more information, read Counseling Today’s October Knowledge Share, “Addressing challenging behaviors for individuals with autism spectrum disorders.”
Heather Rudow is a staff writer for Counseling Today. Contact her at firstname.lastname@example.org.