A retard like me

          Early in 1997 I sought the help of a psychiatrist at Eastside Mental Health (now Seattle Mental Health) to cope with autism. A few months earlier, a practitioner expressed the opinion I had high functioning autism. "You need to see a psychiatrist and get a diagnosis," she told me.

          I was poor at the time, with a pile of medical bills, and really couldn't afford to see a shrink. But I scrimped on groceries and made the appointment.

          Unfortunately, after years of hard work I've adapted so well that even a professional could easily conclude I'm just a little quirky. Nor, when the things you obsess about are people and issues, are there any obvious red flags to mark a significant deviation from the norm. So all he wanted to discuss was a recent physically traumatic event in my life.

          Unemployed, broke, for half what that appointment cost I could have gotten a bottle of the good stuff and whined "whoa is me!" with a buddy while we got wasted. Angrily, I stomped out. Not easy when you're on crutches. But I think he got the message.

          This was before American mental health professionals knew much about Asperger's Disorder. Fortunately, things have changed considerably since then:

          With a seeming suddenness, cases of autism and closely related disorders like Asperger's are exploding in number, and no one has a good explanation for it. While many experts believe the increase is a by-product of a recent broadening of diagnostic criteria, others are convinced that the surge is at least in part real and thereby cause for grave concern. - The Secrets of Autism, J. Madeleine Nash, TIME, April 29, 2002

These include observations of social and emotional skills, communication skills, cognitive skills, obsessions, inflexibility, poor coordination, and other "odd" behaviors. (Source: The Australian Scale for Asperger's Syndrome, M.S. Garnett and A.J. Attwood, O.A.S.I.S.) In the U.S., however, the DSM-IV Diagnostic criteria include the following:

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Source: What are the diagnostic criteria of Asperger's Disorder?, R. Kaan Ozbayrak, MD, Asperger's Disorder Homepage

          While refined diagnostic criteria certainly account for some of the increased number of cases, personal experience suggests to me that heightened awareness is also a factor. Throughout much of my life I displayed several classic symptoms. Yet, the best the Highline School District #401 psychologist could come up with when he visited me at Marvista Elementary in 1964 and 1965 was that I was "mildly retarded" (a label which, despite my IQ of 146, followed me throughout public school). So, while broader diagnostic definitions and other more concrete factors may contribute to the burgeoning number of cases, there's more to it than that:

Not long ago, autism was assumed to be comparatively rare, affecting as few as 1 in 10,000 people. The latest studies, however, suggest that as many as 1 in 150 kids age 10 and younger may be affected by autism or a related disorder - a total of nearly 300,000 children in the U.S. alone. If you include adults, according to the Autism Society of America, more than a million people in the U.S. suffer from one of the autistic disorders (also known as pervasive developmental disorders or pdds). The problem is five times as common as Down syndrome and three times as common as juvenile diabetes. - The Secrets of Autism, J. Madeleine Nash, TIME, April 29, 2002

          Clearly, this is a significant and widespread problem. It's too big to ignore. And nobody knows for certain, yet, precisely what causes it. But there are some theories and key discoveries. Among them, that parts of the brain which play a role in emotions and memory are under developed, and the cerebellum is deficient in the kind of specialized cells critical to data-integration. What's so interesting about this is that these deficiencies may be caused in part by a kind of piracy, in which another part of the brain sucks up resources as it grows too much:

Several months ago, (neuroscientist Eric Courchesne) unveiled results from a brain-imaging study that led him to propose a provocative new hypothesis. At birth, he notes, the brain of an autistic child is normal in size. But by the time these children reach 2 to 3 years of age, their brains are much larger than normal. ... Using mri-imaging technology, Courchesne and his colleagues were able to identify two types of tissue where this mushrooming in size is most pronounced. ... These are the neuron-packed gray matter of the cerebral cortex and white matter, which contains the fibrous connections projecting to and from the cerebral cortex and other areas of the brain, including the cerebellum. - The Secrets of Autism, J. Madeleine Nash, TIME, April 29, 2002

          We've got loads of processing power all plugged into the world through a tiny little pipe. In an analogous sense, this would be like having a computer equipped with a super-fast 1.5GHz P4 chip and a super-slow 286 ISA bus running at 8 mhrz. The result:

Autistic people often suffer from a bewildering array of problems - sensory disturbances, food allergies, gastrointestinal problems, depression, obsessive compulsiveness, subclinical epilepsy, attention-deficit hyperactivity disorder. But there is, researchers believe, a central defect, and that is the difficulty people across the autistic spectrum have in developing a theory of mind. That's psychologese for the realization, which most children come to by the age of 4, that other people have thoughts, wishes and desires that are not mirror images of their own. - The Secrets of Autism, J. Madeleine Nash, TIME, April 29, 2002

          I can attest to most of these, but the last item doesn't fit my experience. Nor is it common to everybody with Asperger's disorder. And this marks one of the frequently observed differences between people with autism and Asperger's:

For autistic people - even high-functioning autistic people - the ability to read the internal state of another person comes only after long struggle, and even then most of them fail to detect the subtle signals that normal individuals unconsciously broadcast. - The Secrets of Autism, J. Madeleine Nash, TIME, April 29, 2002

          Regardless of the degree of impairment, the big question lurking behind it all is, what can we do about it? Can autism and Asperger's be cured? Or if not cured, at least mitigated? The answer is, maybe. A revolutionary approach developed by Judith Bluestone, founder of the The HANDLE Institute in Seattle, offers more than simple training in social skills: "The HANDLE Institute offers an effective, non-drug alternative for diagnosing and treating most neuro-developmental disorders across the life span."

         

Just as no two fingerprints are alike, so also no two people have the same arrangement of pathways that carry messages to, within, and from their brains. ... Many children and adults who experience difficulties in learning, task performance, or social interaction have neurodevelopmental differences which interfere with processing. When the systems that support vision or the sense of position in space, for example, are not strong enough, then reading, math, general organization and efficiency may suffer.

          The HANDLE approach, developed by Judith Bluestone (treats) problems at their roots, rather than merely providing short term solutions or compensatory techniques. Its goal is to help each client achieve functional outcomes. HANDLE incorporates research and techniques from many disciplines. It includes principles and perspectives from medicine, rehabilitation, psychology, education and nutrition. It is founded on an interactive, developmental model of human functioning. - The HANDLE Perspective, Judith Bluestone, The HANDLE Institute

According to HANDLE founder Judith Bluestone, exercise affects neurodevelopment. And with dozens of case studies and thousands of grateful clients, it's hard to argue with their results. Until a few years ago, however, there was no medical research to support her theory. But that is already changing:

(Salk Institute for Biological Studies neurobiologist Fred Gage) now believes that changes in behavior like exercising more can affect neurogenesis and alter the brain's wiring. "The idea is that we have control over who we are, even as adults," he says. We're used to thinking that our minds control our bodies. Could it be the other way around? Could what we do change the structure of our brains? - Old Brains, New Tricks, Alice Park, TIME, August 7, 2000

          So, even as the number of diagnosed cases of autism and Asperger's disorder explodes, help, if not an outright cure, may already be at hand.