Ten Years, Ten Issues

By Daniel Rosenn, M.D.

As the 10th anniversary of the founding of AANE approaches this fall, most of us on the board have been reflecting on what we have learned about Asperger’s Syndrome in the past decade. I thought that for this occasion I would pick out ten observations about issues that have come up for me over the past decade.

1) About Incidence

Approximately ten years ago, the recently revised DSM IV (Diagnostic and Statistical Manual, 4th edition) launched a new diagnosis, “Asperger’s Disorder.” Although Lorna Wing’s seminal article, which actually christened Asperger’s Syndrome* as a clinical entity, had been published in England way back in 1981, to health care professionals and educators in the United States her article was almost as “lost” as Dr. Hans Asperger’s original paper written in 1943. So around 1995, when I spoke to medical audiences, teachers, or mental health professionals, usually I was received politely but skeptically—as a child psychiatrist who had an interesting hobby about an obscure condition that, if it truly existed, had little relevance. The one group of people who were intensely interested and in fact relieved to hear about this new diagnosis were parents of a huge variety of eccentric, socially awkward, and learning disabled children. In general, these children had been badly served by professionals who offered either the wrong diagnosis (hence wrong treatment) or no diagnosis (and hence no treatment). For the first time, parents and affected adults had a neuro-cognitive explanation for behaviors that society had variously interpreted as manipulative, rude, defiant, and parent-generated. What we all have learned in the past ten years is that no matter how precisely one tries to define this disorder, there is an enormous cohort of children, adolescents, and adults with Asperger’s or related conditions. The number may be as high as 1:300 (one in three hundred), and it will continue to grow even after the storm surge recedes from this past decade’s flood of newly diagnosed individuals. The incidence will rise in part because many individuals with AS go on to marry and have children, and these children have a greater probability themselves of having AS. The incidence of the whole autism spectrum (including Asperger’s) is also on the rise throughout the industrialized world, a fact for which we have no verifiable explanation at the moment.

* There is active debate in the AS community about usage of Disorder vs. Syndrome. Many individuals feel that “syndrome” is less pathologizing than “disorder.” DSM defines its diagnoses as “disorders” and insurance companies, mental health agencies, and physicians generally adhere to this convention.

2) About Future Planning

As someone who has seen firsthand how overwhelmed our educational and healthcare systems have become with this large, highly vulnerable group, I have learned that we need to anticipate the needs of this population, plan ahead now, and not simply reacting year by year. We need to start immediately by creating innovative public and private school programs, including residential treatment facilities for the most seriously affected. We need to increase community support for social skills groups, for supervised and assisted living, and structured drop-in centers. We must push for financial subsidies via state and federal programs dedicated to Asperger’s and related conditions, and for more trained staff from all disciplines (including physicians) to diagnose, study, educate, and treat these individuals.

3) About Precision in the Diagnosis of Asperger’s Disorder

Diagnostic labeling in the mental health professions has always had thinly disguised political undercurrents. In 1980 the American Psychiatric Association undertook a fundamental revision of their encyclopedic bible of diagnoses, the DSM III, at a time of enormous political and philosophical angst within American psychiatry. The battle lines were drawn between two main groups. The first was the so-called psychodynamic psychiatrists, who were often psychoanalytically trained and believed in “inner” or inferred mechanisms of psychological actions. The second group, which in fact was ultimately victorious, comprised the more academic, “scientific,” and often medically oriented psychiatrists, who were interested in observable and measurable behavioral patterns that could objectively define disorders on the basis of quantifiable descriptors. These diagnostic criteria were meant to ensure that what was diagnosed in New York as Depression met the same criteria for Depression when diagnosed in San Francisco. This quest for uniformity and reproducibility is the foundation of medical research and medication management, and is now a time-honored tenet of psychiatric training.

The problem is that what most clinicians call Asperger’s Disorder is phenomenologically so variable and heterogeneous that the Asperger’s criteria in the DSM IV are simply not always up to the task. From my standpoint, the criteria have the odd paradox of being both overly general (e.g. “lack of social or emotional reciprocity”) and overly specific (“lack of showing, bringing, or pointing out objects of interest to other people”). Some of the descriptors are hold-overs from Dr. Kanner’s criteria for severe autism (e.g. “persistent preoccupation with parts of objects”), and have almost no relevance to AS. It is disappointing that the criteria seem to be elaborated for children and are extremely sketchy and not very generalizable for adults.

There are also other dilemmas about which the DSM IV remains silent. For example, since the symptoms of individuals with high functioning PDD (pervasive developmental disorder) keep improving with age, it is unclear what to do with a young child who had speech acquisition that was too delayed to meet the Asperger’s Criterion D, and therefore was assigned at an early age to PDD-NOS (pervasive developmental disorder not otherwise specified) when, later in life, this child develops quite adequate speech and becomes clinically indistinguishable from a child with Asperger’s. When, if ever, does his failure to meet a criterion become dismissible? What I have learned in the last ten years is that the Asperger’s diagnosis is a work in progress. It will undoubtedly be revised in the next edition of the DSM. We simply do the best we can with the diagnosis, recognizing that labeling has different meanings in different situations. Subjects included in a research study probably need a higher level of scrutiny than those applying to an Asperger’s social skills group.

Yet as a physician I am still preoccupied by the need for accuracy. The repetitive rituals are different from those of OCD (Obsessive Compulsive Disorder) and require different medications (if any). We need to be able to tell OCD from Asperger’s from Bipolar Disorder. Asperger’s Disorder is not like pornography, which a famous judge claimed he couldn’t define, but knew when he saw it. We need better criteria, more clinical data collection, more long-term outcome studies, better prognostic indicators, and diagnostic subcategories.

It is clear to me that the single most important determinant of the diagnosis is evidence gathered from a careful and extensive developmental history. Unfortunately, many psychiatrists are not trained or motivated to take a detailed early history, preferring to rely on observable symptoms displayed by the child during a diagnostic interview (à la DSM). However, many individuals with AS are at their best one to one in a quiet, structured office setting. Too many clinicians and teachers have been led down the primrose path by a child’s superficial social veneer into thinking the child is “too related to have AS.” We often need to look beneath the behavioral surface and employ tools like neuropsychological testing, office interactional tasks and play interviews, naturalistic observations in peer group settings, etc. In my practice I find it can be incredibly instructive to take a patient down the street to the ice cream store and watch him interact (or not) with the person behind the counter. Yet modern child psychiatry programs are training their residents less in sitting on the rug and playing with children, and more in sitting at a desk and writing prescriptions.

4) About Medications and Asperger’s Syndrome

My impression is that we psychiatrists have over-relied on medication as an alpha dog pulling the Asperger’s intervention sled. In fact, I’ve learned that medication should in most cases be the last intervention, after comprehensive environmental manipulations have provided unsatisfactory results. There are some cases where one needs to jump quickly to psychotropic medications for individuals with AS, particularly for:

  • Children and adolescents with aggressive and violent behaviors.
  • Those with severe overactivity, inattention, and impulsivity.
  • Adolescents and adults with significant depression.

Although I think we all probably expect too much relief from medications, in fact many times they can be very helpful, sometimes even miraculous for Asperger symptoms. In general, I’ve learned to be happy with a 20-30% reduction in symptoms. As a physician who attempts to help parents make harrowing decisions about whether to allow chemicals into their children’s bodies, I crave more reliable, trustworthy, and scientifically sound measurements of probability of risks and side effects. This past year and a half has been disillusioning for many of us who, for example, formerly believed a stock market prospectus describing a potential investment, who trusted an accounting firm’s audit of a major business and, closer to home, a drug company’s pronouncements on product safety and efficacy. Although Vioxx is a drug for arthritis, not AS, the inexplicable delay in removing it from the market secondary to life-threatening cardiac side effects has caused erosion in more than just joint cartilage. Our confidence in the FDA and its ability to protect us from dangerous, under-tested medication has also been eroded. We need better government regulation, and research free from conflicts of interest. Still, we labor on, trying to weigh benefits against reported risks, and waiting impatiently for a less risky Risperdal, a cheaper Concerta, a more effective Buspar.

5) About “That One Person”

On occasion a medication can be absolutely phenomenal in helping a child or adolescent—but not terribly often. What I have learned to my amazement over the past ten years is to what degree, and how often, a single person can absolutely turn around the life of an unhappy, frightened, lonely person with Asperger’s. In the early grades, the single most influential educational intervention to my mind is the personality of the teacher or aide. This easily trumps the number of Speech and Language pull-outs, the richness of the sensory diet, and the Lunch Bunch.

  • The kindness and availability of his middle school principal has enabled a help-rejecting, hyper-vigilant patient of mine rejoin his class and reinvest in his education. This man put a small card table next to his own desk, and invited my patient in every day for “chatting time,” or for refuge when needed, or to help the principal sort the attendance sheets.
  • There is a friendly, accepting, but firm Learning Center teacher who makes it a point to be there emotionally for my high school patient who has no one else to really advocate for her, despite an excellently written IEP and several well-trained teachers.
  • The dorm proctor (residence assistant) living next door to my college patient, who sensitively took him under her wing—and who, by the way, had a brother on the spectrum—was a godsend.
  • A Life Coach who lives in Lexington has the ability to reach out and connect with my adults patients, gain their trust, give them courage to try new experiences, and shows up with them in places most other so-called professionals would not even think to try.

6) About “Getting It”

Who are all these people who “get it”? Can’t we have more access to them than simply the luck of the draw? These are people who seem to know intuitively and somewhere deep inside how to be kind, reliable, and patient. I sometimes puzzle over the term “get it.” What is “get” and what is “it”? I don’t think we are just talking about a technique. These people seem to be able to dismiss pathology, disregard diagnostic categories, and intuitively understand a shared humanity. The hair doesn’t go up on the back of their necks when the kids get truly weird. They seem to get what the character Christopher Boone said in The Curious Incident of the Dog in the Night-Time: “We all have special needs, we all have learning disabilities.”

7) About Special Education

I have had the privilege in the past ten years of having consulted in hundreds of schools in New England. I quickly learned how much more good teachers knew about education than I did. It was amazing to see how receptive some schools were to my Asperger’s Syndrome pitch. Many of the elementary school staff knew about these right hemispheric disorders before I got there: they simply didn’t have a name and an intellectual formulation. Those were the schools that quickly saw the usefulness of an aide, of frequent breaks for the student, sensory diets, lists and schedules, flexibility and affection. Most elementary school teachers like children, get a kick out of them, and want to help. The problems in the early part of the decade came from some (by no means all) of the administrative staff, who had a different constituency: budget managers, school committees, and superintendents. The SPED directors were often caught in an unenviable, lonely no-man’s land between parents on one side, and the superintendent and administration on the other. As the decade wore on, I discovered in my travels that SPED directors were a little like Paladin: Have portfolio, will travel. They seemed to last around three years and then move on to a different school system. They were part of a vast, inter-locking, migratory network, and I would often renew my acquaintance with someone seventy miles away from the locale of our previous meeting.

By the middle of the decade, we turned our attention to the middle schools, where we tried to develop a new paradigm for supporting kids with Asperger’s. This was much harder work than we’d tackled in the elementary schools. Often the credo of these middle schools seemed to fly in the opposite direction of my message. The schools’ message was:

  • Make the child independent.
  • He doesn’t need crutches!
  • He has to take responsibility and initiate things.
  • He needs to be accountable for his mistakes.
  • How will he change if he doesn’t experience consequences for his actions?

In all fairness, these were messages I myself had given parents over the years when they sought my guidance about their neurotypical, misbehaving children. What I learned was how to demonstrate convincingly and respectfully during conferences how the students with AS were different. The Asperger’s Protocol* tasks that we accumulated, borrowed, and created over the decade became evidence to demonstrate dramatically and concretely to educators just how significantly these students distorted, miscomprehended, and struggled sometimes imperceptively with the world around them Frequently these protocol tasks worked better than WISC scores or achievement tests, which frequently misled staff into equating test intelligence and even classroom grades with “normalcy,” ability to function, and skills.

* The Asperger’s Protocol is a series of loosely age-normed tasks that we administer to children during a diagnostic interview. These involve card tricks, picture arrangements, puppet show vignettes, and other “fun” activities that are aimed at perspective taking capacities. Performance on the tasks often vividly illustrates vulnerabilities of individuals with AS.

8) About Politics

While one could develop good working relationships with teachers and administrators, powerful and fickle political forces would often seem to come out of nowhere to tip the Asperger’s apple cart. To my mind, MCAS has been almost uniformly disastrous for the Asperger’s school population. These students did not need more pressure, and their teachers did not need the palpable Classroom Anxiety Disorder created by the teacher accountability clauses.

The lowering of the bar in the revised special education regulations a few years ago was also disastrous. It was as if someone kicked the fulcrum out from under the lever we used to try to access services. The rules changed, and we had to learn another, even more diplomatic way of negotiating to obtain the services students needed.

I learned that I personally had very little individual power for political persuasion, and that we needed collective lobbying by a consortium of citizen groups to continue the political fight for funding, services, recognition, and equity. This is as much of a work in progress as the DSM Asperger’s diagnosis.

A strange paradox occurred to me recently: The high incidence and the very ubiquity of the AS diagnosis has been helpful in weaving cloths of political commitment. So many legislators and politicians have a child, a relative, a sibling, or a neighbor on the spectrum that the valence to our cause has jumped significantly, I think, in the past few years. AS has enjoyed much more media limelight and publicity of late, much of it sparked by parents of children with AS and by adults with AS.

9) About Parents

Parents have been incredibly tolerant of my hectic schedule, and understanding about the glacial rate at which I get my reports written. I have learned that parents are the best allies I can find in my effort to help their children.

Next to the individuals with AS themselves, I have learned more about AS from parents than from any other source, including my medical colleagues, scientific studies, research, and clinical publications. I know this is a sweeping generalization, but… Parents I meet are incredibly well informed, frequently even before they see me for the first interview. They are very well read, and are adroit users of the internet. They attend conferences and workshops, often speaking out, often eloquently. They are skillful networkers. Over time, many give back to the community by becoming volunteers or professionals in such roles as educational advocates, school aides, parent support group facilitators, or active members of Parent Advisory Councils. And finally—they have banded together to create, support, build, and give substance to the Asperger’s Association of New England.

10) About AANE

This organization is unique. Conceived by a small group of committed people, nurtured with the concern and help of parents, fellow agencies, and scattered professionals, it has blossomed into a complex and vital home-base for individuals, parents, and professionals. It has been characterized from the start by inventiveness, integrity, and modesty. It has created innovative programming, discovered resources families need, secured funding, and offered unstinting and highly personalized advocacy. It is a model for this kind of organization, exceptional nationally for its effectiveness, vision, and energy. Over the past ten years, through its excellent and growing staff, dedicated officers and board members, and outstanding Executive Director, Dania Jekel, AANE has found a steady and proud voice for itself and for all those touched by Asperger’s Syndrome.

Editor’s note: Those unfamiliar with the DSM IV entry for AS can find it easily on the internet, for example here: http://web.syr.edu/~rjkopp/data/as_diag_list.html

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