Shelter From The Storm

Who is Austistic?

The first time I saw Bob Dylan perform live several years ago, I wondered why he never looked at the audience, why he never said anything to us or even to Joni Mitchell, with whom he was double billed.  He’s famous for ignoring his audience, for seeming to be in his own world. 

I went to see Dylan again last week for the second time, while I was writing this article.  This time he stood sideways to the audience while his band faced us, again never said hello, never introduced anyone in the band, rocked a little in the corner when he wasn’t singing, never said goodbye, and when the band exited stage right, he exited stage left.  It suddenly dawned on me that he’s probably slightly autistic.  

Some measure of autism seems to be more the rule than the exception in the realm of those acknowledged to be masters of their craft:  Glenn Gould, Steven Spielberg, Woody Allen, David Byrne, Andy Warhol and Bill Gates have all demonstrated the traits of mild autism. 

Socrates, Da Vinci, Michaelangelo, Mozart, Beethoven, Newton, Thomases Jefferson and Edison, Alexander Graham Bell, Marie Curie, Henry Ford, Neitzsche and Jung, Einstein and Wittgenstein, Jane Austen, J.R.R.Tolkein and James Joyce were all, according to their biographers, fascinated by the focus of their interest, often to the point of obsession, and probably would have been diagnosed with autism if the category existed at the time.

Even fictional characters - Lisa Simpson and Spock come to mind - have been endowed with the autist’s intellectual intensity and integrity.  In 1975, when The Who created the rock opera Tommy, Elton John’s portrayal of an autistic Pinball Wizard was as an exotic neurological curiosity.  In 1988, When Dustin Hoffman portrayed the autistic Raymond Babbitt in ‘Rain Man’, there were very few people in the world who knew anything about autism.    By 2002, when Sean Penn played Sam Dawson in ‘I Am Sam’, most people had heard about it.  In a few short years, autism has emerged from relative obscurity into one of the defining phenomena of the 21st century.  Everyone now knows someone with autism.   This fact alone speaks for itself.

The assessment, diagnosis, epidemiology, best practices for intervention - and even if intervention is appropriate at all - concerning autism are the closest thing we in the cloistered world of health care have to a post-modern philosophical debate.   Even its classification and nomenclature have changed markedly over the last few decades.  It was only very recently that the Ontario government reclassified autism as a neurophysiological disorder, rather than a psychological disorder - and therefore insurable under OHIP for services related to its treatment.

 

What is Autism?

ASD, or Autistic Spectrum Disorder, is the currently accepted umbrella term for what has historically been variously described as  PDD (Pervasive Development Disorder), Asperger’s Syndrome, Minimal Brain Dysfunction, non-verbal learning disability, ‘idiot-savants’, high functioning autism, ‘gifted’, ‘heavy’ autism, Kanner Autism, non-verbal autism, and so on.

ASD is a complex neurodevelopmental disorder which is characterized most generally as a difficulty in recognizing or engaging in a socially understood mode of communication concerning ‘I-Thou’ relationships. 

 ASD implies awareness of the world without the benefit of a ‘normal’ heuristic, without a comfortable reliance on unexamined high-level assumptions about the nature of reality and the interpretability of communication, assumptions which allow us ‘neurotypicals’ a wide-screen view of implied meaning in our interactions with others.  An autistic mind  meets the world fundamentally mentally, thinglike, unassociated a priori.  Where an autist has made sense of the world, it is because he or she or someone has a bolted it together logically.

 It has been postulated that ASD is an extreme version of the typical male brain pattern.   Interestingly, four times as many males are diagnosed with it than females - though females diagnosed with it are usually more deeply involved cases. Those ‘in the spectrum’ have difficulty with verbal communication, unwritten social rules, complex or subtle emotions, reciprocity; the so-called ‘right-brain’ ‘touchy-feely’ ‘yin’ sorts of empathic cognition typically associated with female consciousness.  Like many men, autists lack a theory of other persons’ minds.

There is also often a remarkable facility with, and obsessional interest in, the typically male ‘left-brain’ functions such as memory recall, (often either photographic or eidetic), logical analysis, precision, and consistent axiomatic systems such as mathematics, engineering and computer science.  

 So while there is a kind of blindness to the intuitive apprehension of other minds, there seems to be a correspondingly greater affinity for and comfort with the monologue of ‘I-It’ relationships with things, technology, concrete thinking, literal linguistics and formal logic.  There is also a remarkable phenomenological honesty in the ASD community.  Someone lacking a theory of mind has no need of learning deviousness, manners or social graces.  This is often the root of many awkward social situations, and marginalization.

Behaviors that count as autism admit of a remarkably broad range. As a spectrum disorder, ASD shows up as everything from pedantry to genius, from celebrity to the institutionalized, from hyperlexia to silence.   It shows up as full on freight train symptomatic to being barely distinguishable from one who gets lost in his work.   Perhaps we’re all a little autistic.   

“Autism is an engima.” said my friend Paul in response to my reflections about Bob Dylan’s autism, just as the poet was about to walk on stage.  Paul’s 35 year old daughter is profoundly autistic. “It is such an enigma.  And what people don’t realize is that the spectrum of what is autistic is even broader than what is normal.”

Any of the following, in any degree or nuance, can count: social retreat, abnormal responses to sensory stimulation, failure to make eye contact, be interested in or attach emotionally to parents and peers, abnormal verbal skills typified by repetitive sounds and echolalia, or pedantic idiosyncratic use of language (poetry?), obsessive interest in specific objects or subjects, perseverance of activity, an insistence on rigid routine and predictability, emotional lability in the face of novel or unplanned experiences, clumsiness, tactile defensiveness, and stereotypical body movements, or ‘stimming’, such as rocking, flapping, bolting, jumping, hitting or flicking one’s self, chewing, bruxing, and facial tics. 

 

A Short History

The term ‘autism’ was coined in 1912 by a Swiss psychiatrist named Eugene Bleuler to describe the quality of self absorption amongst children diagnosed with what was then thought to be schizophrenia.  In the mid 1940’s Dr. Leo Kanner, an American psychiatrist, was the first to describe a cluster of child patients who had similarly odd behavioral patterns.   About the same time the Austrian psychiatrist, Dr. Hans Asperger, described a group of people who shared many of the same characteristics of autism, but who were able to communicate well verbally. 

Since 1997, when Dr. Asperger’s writings were translated, this description has become widely known as Asperger’s syndrome.  Like ‘autism lite’, these individuals are often hyperlexic and display extraordinary mental capacity within narrowly defined areas of interest.  

Some have argued that the population historically pegged as ‘geeky’ or ‘nerdy’ are actually experiencing varying degrees of Asperger’s syndrome.  Dr. Asperger described his patients as ‘little professors’, as they could go on and on about their special area of interest - most often math, computers, engineered devices, linguistics, or any rule governed system  - without the slightest nod to the response of their audience, or unwritten social rules of engagement.  Silicon valley, for example, is chock full of ‘Aspies’. 

 

Epidemiology

Interestingly, someone diagnosed with ASD is 7 times more likely to have one or more parent occupationally involved in mathematics, computer science or engineering than the neurotypical population.  One or both of the parents of a child diagnosed with ASD often exhibit similar, but milder, ASD-related behavior, and anecdotal evidence often points to a lineage of oddness and narrowly focused brilliance in the extended family.

Exactly how big is autism?  The World Health Organization estimates that the incidence of ASD has risen from 1 in 150 in 2000 to 1 in 36 by 2020

Estimates now stand at some 30,000,000 people worldwide as having been diagnosed with ASD, half of whom are of school age.  This is approximately 75% of the entire population of Canada.   While many in the spectrum are high functioning, many will require varying degrees of help into adulthood, even for basic activities of daily life.

When one considers the human and financial cost of this situation to caregivers, family, friends and the educational system, these are staggering statistics.  In October of 2006, Jon Stewart hosted an A-list fundraiser for autism education called "Night of Too Many Stars", sponsored by Chevrolet and Intel.  This kind of  hollywood hoopla is usually reserved for structurally entrenched global problems such as poverty and AIDS. 

 

Who is Normal?

Autism is now so pervasive it has spawned its own political economy.  While most people with autism are frustrated by living solipsistically, disconnected in an apparently fragmented world, many feel quite comfortable with their way of being and do not regard their cognitive style as a problem at all.  And while a majority of the autism support community - families primarily - are stressed, impoverished by the high cost of special education, and polarized by the need for fundraising and advocacy into seeing autism as catastrophic, more serene voices can also be heard that question basic presuppositions about normalcy, brain function, psychology and the very purpose of education. 

There is a large and growing community which seeks to de-pathologize, dignify, celebrate and redefine autism as simply a different way of legitimately apprehending reality.   According to the argument, the only real therapy for autism is applicable to the neurotypical population, ‘the larger phenotype’, facilitating a greater tolerance for neural and behavioral diversity.   See, for example, neurodiversity.com, , aspiesforfreedom.com, taaproject.com.

Also I often hear, especially from those with an explicitly spiritual world view,  reference to ‘Indigo children’, an anti-label understanding of ASD behavior which relates spiritual, psychic, psychological and physiological concepts into the proposition that children otherwise labeled as autistic or ADD/HD actually represent an evolutionary quantum leap.  Moreover, the argument is that the dramatic increase in highly individuated children who ignore social norms in favor of following the dictates of their own precocious intellect may represent an adaptive mutation, conferring survivability for an increasingly chaotic planet, teetering as we are on the edge of profound ecospheric and social change.

 

Research

An enormous literature, much of it speculative, some of it scientific, has grown up around ASD.  A good deal of progress has been made on differentiating it from disorders which often accompany autism but which are not necessarily pathognomic, such as obsessive-compulsive disorder, Tourette’s syndrome, fragile x syndrome, Rett syndrome, seizures, anxiety disorders, attention deficit disorder, oppositional-defiant disorder, dyspraxia, aphasia, dyslexia, digestive and autoimmune disorders, sensory integration issues, depression, and so on.   

Interestingly, synaesthesia - the neurological condition in which two or more bodily senses are coupled, and perfect pitch - the ability to produce or identify a note by name without the benefit of a reference note - often also accompanies ASD.

Recent research has shown that the the average brain size of someone with ASD is significantly larger than the neurotypical population.  While of normal size at birth, there is a rapid growth in the frontal lobes by the age of 2, and the average brain size of a 4 year old diagnosed with ASD is comparable to that of a neurotypical 13 year old.  This brain size difference disappears by adolescence.  Chronic brain inflammation is common.  Further, there are significant differences in the wiring of the ASD brain; while there is more white matter generally, there are more short neurons within disparate parts of the brain, and the longer neurons that interconnect these various parts are far fewer than in the neurotypical population.  Not surprisingly, functional MRI studies show a lack of synchrony amongst disparate brain functions.   There is much debate as to whether these are symptoms of an as yet undiscovered underlying pathology, or whether these findings are the pathology itself.

 

What Causes Autism?

As far as what actually causes autism, we are no better off than the proverbial blind men of India inaccurately describing an elephant according to what part of the elephant they were touching.  At one point Bruno Bettleheim claimed that bad mothering - the ‘refrigerator mom’ was the cause.  A study recently released from Cornell University positively correlates television watching with ASD.  Some research points to hypoxia at birth resulting from early cord clamping protocols, and febrile events, including adverse reactions to vaccinations, have also been implicated as etiologic factors, although the FDA has produced exhaustive research disproving a connection between vaccines and autism.  Cambridge University professor of psychiatry Simon Baron-Cohen (Borat’s real-life cousin!) postulates that an increase in social mobility and the entrance of women into engineering and mathematics - historically exclusively male preserves-  have allowed individuals with similar inclinations towards systematizing to find each other in what he describes as ‘assortative mating’ and thereby having children with amplified genetic tendencies to autism. 

Much remains to be seen.  Current theories are numerous, with the leading contenders involving a complex interplay between genetic predisposition and mutations, gastrointestinal and autoimmune disorders, cumulative heavy metal toxicity, and sociological factors. 

  

Working with Autism

So what is done with autism?  The lion’s share of funding, both public and private, currently goes towards paying for long term special education services, especially for an intensive one-on-one form of behavior modification called Applied Behavioral Analysis, or ABA.  Occupational and speech therapy, sensory integration therapy, dietary restrictions and supplementation, homeopathic remedies, botanicals and pharmaceuticals are also common.  While it is outside the scope of this article to describe the details, suffice it to say that, like all aspects of this issue, there exists a wide variety of approaches and models, and much debate as to usefulness. 

One of the hallmark sensory integration issues of ASD is exquisitely sensitive reactions and aversion to touch.  Most find normal tactile contact uncomfortable if not intolerable, preferring instead the repetitive shocks of stimming, or the self-controllable deep pressure of lodging one’s self into tight spaces.  Many have found craniosacral therapy to play an important role in integrating proprioceptive and tactile sensory overload, reducing anxiety, increasing body awareness and facilitating learning.  As a practitioner specializing in pediatric craniosacral therapy, a large portion of my practice is dedicated to working with those diagnosed with ASD.

Families attending to the practical realities of someone with ASD are almost universally overtaxed, filled with the tensions of watching out for even the basic safety of an unpredictable mind.  For this reason I usually end up working with family members as well on the reduction of stress related tensions.

It is in this sense that I see the value of my work as multi-layered.  Wholly apart from any hands on help, many of the families say that just being able to talk to a health care practitioner who knows something of the terrain of ASD, who can bear witness to the paradoxical mash up of suffering and joy that is ASD, and can hold a conversation about a very complex set of concerns, is therapeutic in itself.  Bodywork helps too.

I often find myself in the role of explaining to parents that there is a real 3D person inside that collection of disturbing habits, and that the habits are really disturbing only to the parents.  I also find myself explaining to parents that many of the disturbing behaviors are actually age appropriate normal behaviors, and would be there with or without autism.  This is especially true with teenagers and the terrible twos.

What happens during a session is as wide ranging as the individuals I work with and their moods; While the primary focus of craniosacral therapy is a stretching of the dural membranes via mobilization of the cranial bones to which they are internally attached, the reality is that one modality melds into another intuitively; sometimes I’m doing very gentle energy work and the person is hovering between sleep and wakefulness, sometimes I’m doing a long lever mobilization as the child giggles hysterically, now an acupressure point, visceral work,  myofascial and positional release. 

A trained and sensitive therapist can usually detect a rhythmical increase and decrease in the volume, warmth and pressure of the cranium in anyone.  The cranial bones of someone with ASD feel remarkably restricted in movement, as though pressure from the inside prevents alternation of cranial size.  This palpatory finding, which has been widely noted for the last 40 years, makes sense in light of the recent MRI findings about brain size differences in ASD.  A good session ends with a more pliable and less viscous feeling in the cranium.  Behavioral differences are immediate, with a decrease of stimming, greater receptivity to communication, generally a slower and more coherent presence. 

One young man with Asperger’s syndrome with whom I worked had an ability to describe his sensory experience with remarkable precision.  He said that after a session he was able to take note of his environment - the colour of the walls, the artwork, the quality of silence in the room, and that this was a function of his being much less distracted by the muscular tension - especially jaw tension - that he usually experienced interacting with what is to him a confusing world. 

Typically I cannot work directly with the ASD individual for much time in the first few visits; usually there is too much novelty in terms of schedule and stimulation to allow for lengthy time on the table.  I usually work with the parents first.  This helps the parents to trust what I do, to know that it’s not painful, that it really feels like something (since it doesn’t look like much from the outside), and it provides them with a felt experience of some of the basic techniques I subsequently teach them to do daily with their children.  It also provides the child with an example of the routine to be followed, promising that it will be his or her turn at a certain time in the session.  Usually by the second or third session, the child scampers up onto the table and is willing to stay still for the duration, much to the parents’ surprise.

Touch is just one tool among many.  I use precise concrete language, avoiding metaphors, slang (though some Aspies I know are the keenest punsters and get the worst of my jokes.  Some are sublime artists.)  I sometimes write out the plan of the session with the times I expect the child to lay still on the table.  I am careful to turn off the background music I usually have on in the clinic, and turn off extraneous lights.

Unlike most of the rest of my practice, which tends to be time limited, I tend to work with ASD families over the long term, with frequency of visits dependent on the family’s resources.  Typically this works out to a cluster of 3 to 12 weekly sessions until a pattern of trust and recognition is established, then biweekly or monthly sessions indefinitely, with clusters of greater frequency during stressful periods, growth periods (during which stimming usually increases), and after fevers or traumas. 

I believe that what is most important about working with autists is affirming and searching out the whole person so labeled.   Working with the stigma and other peoples’ negative reaction is usually reported by autists as the worst part of being autistic.   I assume that everyone is of high intelligence, capable of the transcendental, and my real job is to figure out how to facilitate communication. My task is to offer shelter from the storm of the neurotypical world, to learn how to be sensitive, not so thick and gross and presuppositional, to slow down enough to feel out what someone else is feeling; to behold along with someone, for example, how light can be laid bare, tinkly, silent and full of obvious holographic import.  And sometimes, if I’m very steady, I swear I can sense the dawning reciprocity of a theory of mind.

 

 

Mark Levine is clinical director of Mark Levine, B.A., R.M.T. Manual Therapy.  He has been in practice for the last thirty four years.  He provides Craniosacral and osteopathic manual therapy services to infants, children, and adults for a wide variety of neurological, pain and stress related concerns. 

This article was originally published in Massage Therapy Today, a publication of the Ontario Massage Therapist Association, May 2008, updated 2024