If "hope" was a drug, the worst addicts would be parents. Proof came in a recent New York Times Magazine cover story, "The Kids Who Beat Autism," which offered a few Cinderella stories against a common evil step-sister, the motley crew of diagnoses lumped into Autistic Spectrum Disorder.
When people say someone "beat" a condition, they are usually referring to serious unequivocal diseases, like cancer. Credited with coining "the Big C," the catch phrase for cancer, the indomitable legend John Wayne declared, "Well, I beat the Big C once, and I'll just have to do it again." Cancer is the unequivocal enemy and the patient, in this case, The Duke, is a gonna root and toot till this stinkin' hombre leaves town.
"Autism isn't an illness in need of a cure," says Ari Ne'eman, the president of the Autistic Self Advocacy Network, a neuro-diversity advocate quoted in the story. We are introduced to the less astounding-sounding "optimal outcome," defined as someone who is "without any significant autism symptoms and functions within the normal intellectual range, even though other difficulties such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist."
Our predominant paradigm about virtually all disabilities is a one: Disability is seen as a nominative pathology -- a disease, degeneration, defect or deficit located in an individual. Another inherent problem in the framing of autism as a disease -- which, in medicine, means a particular abnormal, pathological condition that affects part or all of an organism, compared to a statistical sense of normality. Yes, autism has those signs and symptoms, but also much more (e.g., often areas of remarkable aptitude) and somewhat less (e.g., how some symptoms often lessen as context improves).
The medical model situates autism solely within the individual. This means the affected individual would present with the same symptoms across settings, as is the case when one is diagnosed with a cardiac condition, diabetes, or hepatitis C. Spend a few months in this field and you notice the remarkable role context plays in the life of autism. Depending on the "goodness of fit," a person diagnosed with autism can appear seriously impaired in one setting and smart but pretty darn quirky in another.
For example, when in an intensive residential program, Alex, a 22-year-old man diagnosed with ASD whom I worked with, was disorganized, prone to tantrums and destroying property, and thought only of escape and revenge against his captors. Some months following his liberation, Alex is working in an FDA computer lab as an intern, and he is regarded as thorough, hard working and humorous. Alex is quirky, but well-liked and not at all like the miserable young man he was in the residential program.
I believe that a model rooted in education is a more constructive frame for making sense of autism than the medical model. ABA works extremely well for a large number of youngsters with moderate to severe autism. Our educational system works pretty well for a large number of youngsters needing to learn to read, write, and learn arithmetic. Neither ABA nor education succeeds with everyone, but by and large, they both get the job done. ABA is not magic by any means; if anything, it is the meticulous application of empirical principles derived from behavioral psychology to the problem of learning. It is about slicing the education onion as thinly as possible -- how small does a unit of learning need to be in order for the child to successfully master a skill? And this works for virtually any skill. Using the principles of ABA, two colleagues and I trained 8-year-old girls with no previous softball skills to achieve batting averages over 500 and a 65 percent successful fielding rate in league competition. Applied Behavior Analysis is a wide-ranged, adaptable and efficient manner of teaching skills that might otherwise be too difficult to learn, or take inordinate amounts of time.
All parents want their kids to achieve an "optimal outcome," emerging from childhood (mostly) ready for the world -- independent, shorn of childish poor judgment, given to minimal magical thinking, and less of that pesky perpetual sense of entitlement.
One such person, referred to as "optimal outcome," is quoted as saying: "There's nothing wrong with being autistic, but my life is much easier not having it. For as long as I can remember, I've known I was autistic, but I never felt autistic. I just felt like me. That's all I knew how to feel."
When I started out in this field, "autism" was considered a rare disorder. Throughout the 1980s, the incidence was reported to be 1 in 10,000 (Diagnostic and Statistical Manual of Mental Disorders, Third Edition). The Disease Control and Prevention's most recent study found that one in 68 children has autism, up from one in 88 two years earlier. Autism is anything but rare.
Back in the mid 1980s, my role as a virgin psychologist in an early childhood intervention program was as a member of "diagnostic team." The term sounds credible, but it was more like the proverbial group of blind individuals describing that part of the elephant they could touch and knew a bit about. My tribe, psychologists, was keen on social cognition and skills, speech therapists on issues of communication, occupational therapists on self-regulation, teachers on learning core academics, etc. "Autism" as a term was barely known, and parents sometimes mistook it for being told their child was "artistic," which they already knew, and were happy to hear it from a team of professionals. The fleeting pride quickly vanished, as they then wondered why fledgling artistic talent was praised while they harbored deep concerns about their child's behavior.
If the term was familiar, it typically had dread connotations. This was back in the digital dark ages, those hazy, dark pre-Internet, word-of-mouth days, and most who recognized the word "autism" associated it with children who never learned to communicate or relate to others except on the most primitive level, and who often were destined for institutionalization.
The "Kids Who Beat Autism" piece hopefully, if soberly, presents some of the most recent scientific findings and interpretations about the value of Applied Behavior Analysis, or ABA, as it is commonly referred to. And thankfully, the news is mostly good. With quality intensive intervention, research indicates most children are able to surpass the most devastating autistic symptoms -- severe deficits in relating to others, odd repetitive, compulsive behaviors and a style of responding to the world that can appear either hot-wired or numb to others. But even though the news is good, there is a healthy array of vexing uncertainties tangled with autism.
Of all the diagnoses I have worked with, autism is the one that comes closest to discussing religion and few are agnostic about the perplexities. One of the controversies the article implicitly reveals is the fact that autism is not a homogeneous disorder. ASD is a pretty big tent. I have seen kids diagnosed autistic who have a more similar profile of strengths and disabilities with a technically non-diagnosed person (who may be quirky, to be sure) than with another individual with the same diagnosis.
A second confusing factor is the "moving target" nature of psychiatric diagnosis in general and autism in particular. There are not many chronic medical disorders one can be diagnosed with one week, and not the next, with the only change being the time between one edition of a diagnostic system and its updated version. Asperger syndrome shares the fate of Pluto: It's there, but we are instructed we can't call it what we used to call it. And there is a new kid on the block, Social Pragmatic Communication Disorder, a kind of in-law, related, but not on the autistic spectrum. Things cleared up yet?
The Times piece raises the issue that "... (neuro-diversity advocates) deeply resent the focus on erasing autism altogether. Why is no longer being autistic more of an optimal outcome than being an autistic person who lives independently, has friends and a job and is a contributing member of society?"
This forced choice is unfortunate, I believe, because it seems to imply that to improve or eradicate the central features of autism is to somehow squelch the person's individuality, uniqueness, and identity. Identity is in large part a product of the reflection of ourselves through others' eyes. The more opportunities we have to interact, create, problem solve, play and work with others, the richer the tapestry of this narrative we call identity.
Jackie Leach Scully's research has shown that congenital or genetic conditions or diseases that are stable rather than progressive, can also form an important part of a person's identity. In her series of studies, people with impairments such as genetic deafness or dwarfism made statements like: "If you take these [disabling] elements away from me, I wouldn't be X, I would no longer be that person."
At this point in time, many are particularly concerned about how confident we should be in our ability to distinguish between real diseases, and characteristic behaviors that some find disturbing (e.g., homosexuality, which held a full-time position as a disorder until 1973 in the DSM-III, and went part-time (ego-dystonic homosexuality, i.e., being gay and having issues with it) until 1986 in the DSM-IV). Today it is no longer a disorder at all! Fabulous!
There are qualities that are associated with autism that are hard to construe as defects -- for example, various corporate policies to deliberately hire people on the "spectrum" (see: Tech companies deliberately hire people with autism). There are also the well-known achievements of Temple Grandin and the literary windows offered by John Elder Robinson, etc. The truth is there are many features of autism that can result in isolation, lifelong dependency on others, vocational achievement far below what interests and intelligence predict, as well as severe depression and anxiety disorders.
These are target weaknesses that are worth every effort to ameliorate. In working with autistic individuals over the years, it is increasingly clear to me that the essence of their uniqueness, their identity is liberated when the burden of social difficulties, fixed interests, compulsive behavior and peculiar sensory reactivity are reduced. We are all on a spectrum, believe it or not. Unlike the absolute and scarce picture of "health" as defined by the WHO, "neuro-typicial" is a statistical mash-up; we all have our quirks. Most of us should credit our luck of landing in "well-fitting contexts," that is, life conditions that do not overtax what we can cope with. Identity is fluid, evolving and susceptible to the elusive thrill of victory and the dreaded agonies of defeat -- though the latter are critical to learning skills and developing character. Alex looked pretty autistic in the residential setting; by most measures, in his current context, he would count as an "optimal outcome," which is really another way of saying, "Considering he was diagnosed with autism, the kid surprised the hell out of us and is doing pretty well."