Dealing with the Disappearing Asperger Diagnosis
By Dan Coulter
Those of us diagnosed with Asperger Syndrome, or who support people diagnosed with Asperger Syndrome, may have a fight on our hands. Or, maybe not. It depends on the impact of the upcoming edition of the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association (APA). The APA plans to release edition 5 of the manual (DSM-5) in May of 2013.
Along with other changes, the DSM-5 will do away with the diagnosis of Asperger's Disorder, commonly known as “Asperger Syndrome.” People with Asperger symptoms and behaviors will be evaluated under the broader diagnostic category of “Autism Spectrum Disorder.”
Why is this important? The manual's diagnostic codes affect treatment decisions, insurance benefits and government-mandated rights and supports – including what accommodations schools and employers must provide to people with disabilities. If a person diagnosed with Asperger Syndrome doesn't quality for an Autism Spectrum Diagnosis under the new DSM-5, that person could lose services. Also, the term “Asperger Syndrome” has given us an identity that represents our strengths as well as our challenges.
The APA said the changes in the autism criteria were designed to make the diagnosis process more accurate and consistent. However, many members of the Asperger/autism community and those who support them have concerns that the changes could have significant negative effects. This is not universal. I've also heard optimistic assessments of the changes.
But if the concerns turn out to be well-founded, we might have to fight to make sure people get the services they need – and to regain the identity that's now helping us be accepted by important groups such as employers.
We won't know exactly how the changes will affect the autism community until the DSM-5 is published and goes into effect. I've read a number of articles that say we'll just have to wait and see about its impact.
But I don't think we can afford to wait. As a veteran of more than 20 years working for Fortune 10 corporations, I've seen similar situations in the past. From my experience, it's a better strategy to learn as much as possible about the proposed changes, anticipate how they might affect us, and plan the best ways to respond.
First, let's look at an overview of the autism diagnosis proposals the APA announced.
The APA published their proposals several years ago on their website and took public comments. In December of 2012, the APA announced it had accepted the proposed changes for the DVM-V, and removed the text of the changes from their website for final editing.
While we won't see the results of any final edits until the manual is published, they are not likely to be substantially different from the last version published on the APA website. In any case, we can only work with the most recent information they provided.
As proposed, the new autism diagnosis criteria will assess challenges such as “persistent deficits in social communication and social interaction” and “restricted, repetitive patterns of behavior, interests, or activities.” People must meet a number of specific requirements for a diagnosis. A diagnosis decision will also involve when behaviors appear and how severely a person is impaired. Sensory sensitivities could play a role. Generally people who are diagnosed with Autism Spectrum Disorder will fall under one of three categories. Level 1: requiring support. Level 2: requiring substantial support Level 3: requiring very substantial support
The DSM-5 also creates a new, separate diagnosis called “social communication disorder” for people who have difficulty communicating, but don't meet the other criteria for autism spectrum disorder. A significant number of people now diagnosed with Asperger Syndrome may fall into this category. It's not clear how the social communication disorder diagnosis will qualify people for benefits, supports, and accommodations.
That's an overview. Now let's hear some concerns about the DSM-V from two widely respected experts in Asperger Syndrome: Dr. Fred Volkmar, M.D. and Psychologist Dr. Tony Attwood.
Dr. Volkmar is the Irving B. Harris Professor of Child Psychiatry, Pediatrics, and Psychology and Director of the Yale University Child Study Center, Yale University School of Medicine. He's also the Chief of Child Psychiatry at Yale-New Haven Hospital, New Haven, CT.
Dr. Volkmar was the primary author of the autism and pervasive developmental disorders section of the DSM-IV, which has been used since 1994. He was on a panel drafting changes to the new DSM-5, but resigned in protest at the direction the panel took. With two colleagues from Yale University, Dr. Volkmar did an analysis of how the proposed diagnostic criteria would affect people with high functioning autism. The Yale team based their work on data from a 1993 study of 372 children and adults who ranked high on the autism spectrum. The analysis showed that only 45 percent of the people in the study would qualify for a diagnosis under the new criteria. These results were reported in the January 19, 2012 edition of the New York Times. The APA disputed the analysis.
Dr. Attwood has an Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey and a Ph.D from the University of London. He is currently adjunct Associate Professor at Griffith University in Queensland. Dr. Attwood's best-selling books about Asperger Syndrome, including “The Complete Guide to Asperger Syndrome,” are respected around the world.
On March 31, 2013, The Sydney Morning Herald quoted Dr. Attwood, who lives in Queensland, Australia, saying, “'At worst, 75 per cent of those with a current diagnosis of Asperger's will no longer meet the criteria for an autism spectrum disorder diagnosis under the new criteria.” Dr. Attwood is cautioning the Australian government about using the APA's DSM-5 criteria.
Again, there are people and groups in the autism community who favor the DSM-5's proposed changes. I share the concerns expressed by Dr. Volkmar and Dr. Attwood.
So, what can we do?
After consulting with a number of people and support groups who have a stake in the changes the DSM-5 will bring about, I'd like to share some suggestions for parents of children diagnosed with Asperger Syndrome. Adults diagnosed with Asperger Syndrome can take the same steps on their own behalf.
1. Review your child's current diagnosis information and any support he receives. Talk with professionals, representatives of schools, or other organizations that provide services about the coming DSM-V changes to get their perspectives. Ask how they plan to deal with the DSM-5's publication. This includes how long they plan to use an existing Asperger Syndrome diagnosis and how and when they will re-evaluate individuals (or ask that you have them re-evaluated) based on the new diagnosis criteria. The people you ask may not have answers yet, but it's a good idea to start the conversation now.
2. Stay informed. Many national and local Asperger/autism organizations are keeping a close watch on this issue and will be valuable sources of information. You'll need to look to each group to get its particular perspective on the DSM-V. These perspectives range from very concerned to neutral to optimistic. Some groups that traditionally provide information on Asperger Syndrome include: The Autism Society of America and their state chapters, The Asperger Syndrome Education Network (ASPEN), OASIS@MAAP, Autism Speaks, The Asperger Association of New England (AANE), and The Asperger Syndrome and High Functioning Autism Association (AHA). There are many more groups with a stake in this issue that will be good sources of information and support and it's not practical to list them all here, but the ones I've mentioned are a good place to start.
3. Be prepared to advocate to make sure the new autism diagnosis is interpreted and applied appropriately. If you see that your child needs support, but you're told that he or she doesn't qualify for a diagnosis under the DSM-5 criteria, be ready to join with others to push to have that changed. While revising the specific wording of the new diagnosis may not be possible, you may be able to influence how the diagnosis is interpreted and applied by governmental or medical or educational organizations. An organized effort by the Asperger/autism community could have enormous impact.
4. Be prepared to advocate for services. Even if your child is included in a diagnosis, you may have to work to ensure that diagnosis entitles your child to the support he or she needs. Again, it will help to band together with parents in similar situations or work through established Asperger/autism-oriented groups.
5. Be ready to act fast. Watch for news stories and Asperger/autism organization communications about the DSM-5 when it is published. Study the diagnostic criteria and how experts analyze it. Consult with the people and organizations who support your child. Move quickly to take actions on behalf of your child, yourself, or the Asperger/autism community as a whole. If you can clearly define the issues and make a strong case, you're more likely to influence a positive outcome.
6. If you have to fight, fight nice. Because you're not really fighting. You're advocating to help others understand your position. To see what you see. If you can establish common ground that you and the person across the table are both working to ensure people on the autism spectrum get the support and services they need, you're more likely to find solutions that work for everyone.
When it comes out, the DSM-5 must pass the test of working for the benefit of people on the autism spectrum in the real world. I believe that people on all sides of this issue have good intentions. We need to be ready to work together to ensure that those good intentions are realized.
ABOUT THE AUTHOR: Dan Coulter is the author of the book, “Life in the Asperger Lane,” and the DVD, “Managing Puberty, Social Challenges and (Almost) Everything: A Video Guide for Girls.” You can read more of his articles at coultervideo.com.
Copyright Dan Coulter 2013 Used by Permission All Rights Reserved