Autism: A Discussion of Research, Causation and Treatment: "The Case of RAHUL"

Autism: A Discussion of Research, Causation and Treatment: "The Case of RAHUL"

Rahulis achild often who was diagnosed with autism at around the age of two. He is in some ways an ideal subject, because he is neither in the high functioning nor low functioning range. From an observational standpoint that is important. So-called high functioning autistics are often so normal in terms of language skills and life style (eg. Temple Grandin) that it is hard to describe their limitations in stark neuropsychological terms. Moreover, in some instances high functioning autistics are misdiagnosed. For example the symptoms of childhood schizophrenia, organic brain disorders and even severe attention deficit disorders can overlap with autism. By the same token individuals with severe autism, with no language and profound deficits in the areas of cognition, motor skills etc. might not be able to provide clear indicators of what they can and cannot do. That makes their development difficult to describe in specific terms, making it hard to conceptualize with respect to causation and treatment possibilities.

Rahulis somewhere in the middle. He is quite capable on some ways. He is tuned in to his environment - rigidly, but tuned in nonetheless. He anticipates when others need help and often jumps in to assist. The problem is, he does not understand social mores or the need for ice-breaking skills. Family, friends, strangers he knows the difference, but when it comes to acting in the moment, it doesn't matter to him. Life is a series of dos and don'ts mostly do's. His outlook is to the point: see the circumstances, respond to the circumstances. Thus his abilities and social outlook tend to be literal and fragmented. The word "context" is as foreign to him as the Swahili word for pomegranate might be to us.

He uses speech, though unlike so-called high functioning autistic persons he won't write books about his life experience or make presentations to groups. When he talks it is in a muffled tone and often askew of the interaction. He cannot look another person in the eye and converse. Maybe one or the other but not both, at least not in the usual rhythmic sequence familiar to the rest of us. Instead he might, after hearing a question, wander a bit, then in either sing-song or muffled tone provide a phrase that constitutes a delayed reply. The reply will be rough around the grammatical edges but usually apropos the interaction. Unfortunately this often goes unnoticed. The delay and intervening behaviors occurring between the first speaker's comment and his response is often so long such that a less than perceptive person might not think he can speak at all. Over time much of his language will be so often ignored or unnoticed that he will lose his enthusiasm for communicating vocally.

In the clinical and social domains worldRahul is seen as having a severe neuro-behavioral disorder. To Alexander the disorder is not solely his. Rather it is one of proportion; in part, his deficiency in not being able to orchestrate the energy required to adhere to the language, social and behavioral rhythm codes of the outside world, in part our deficiency in not being able to comprehend, perceive and operate in his choppy, dysrhythmic world.

Rahulis misunderstood by many who are not familiar with his habits and the primary point of contention between he and the outside world boils down to two components. One is speed. While he reacts with great alacrity in many instances and requires much proactive cueing to abstain from impulsive behaviors he is also very delayed in his comprehension and expression. ThusRahul is at once too fast and too slow in his pace.

The other component is energy.Rahul is a sweet, robustboy and when aroused his hand grip can be unfathomably strong. Under such conditions he can lift heavy objects when for example helping (sans introductions) unsuspecting strangers. Consequently many assume he also has stamina, particularly his day program staff who might expect him to engage in activities for several hours on a daily basis. He typically resists doing so and when he is able to endure the demands of a daily program he ends up extremely tired and even more reluctant to engage the next day. A cloud - an inexplicable paradox - hovers over his handsome head. How can so strong aboy be so lacking in task durability? What indiscernible weakness lies behind this man's global reluctance to participate, his occasional behavior issues and his overall development?

Rahul's behavior includes other confusing elements. For example his expressive capacities present a conundrum. He never "took off" in his early language development, in fact did not speak at all until he was around ten years old. Nor did he respond very well to directives, that is, unless he could put them into some visual or experiential context. Yet every once in a while he would utter a phrase he did not apparently learn and/ or never used before. Sometimes it can be profane: for example an f bomb occasionally emerges when he is frustrated. At other times it is more profound than profane for example, a barely audible "I am very intelligent."

Rahul's mode of acquisition (aka learning style) can be quite mysterious. To someone working with or living withRahul it would appear he is somehow able to learn in latent manner; that is, without being taught, without giving any inclination that he is absorbing stimuli around him. Questions arise: does he actually absorb inputs? If so, is it done in the same way we do, whereby short term memory converts to long term memory, leading to subsequent retrieval? Or is it something else; some compensatory or adaptive memory process we don't understand? And even though he seems not to absorb readily, information presented to him he is able to retrieve it later perhaps hours later, sometimes days later.

Rahul's language is almost never its own entity. Instead it seems to require extra "push" from other response systems. For example he moves a lot when he speaks, occasionally provides his own musical vocal accompaniment, and he will often cock his head as if using some sort of body English. Only with that added somatic thrust can he speak or so it seems.

Still another feature of Rahul's behavior is a spillover effect. Once aroused, he tends to remain aroused. Input has a pervasive impact and is so singularly influential in prompting his behavior that he is often unable to divert his focus from the first stimulus. As a result he tends to miss the experiential forest for the trees. Because of the singular, fervent impact of stimuli on his brain he soon learns to avoid stimuli that are too blatant or complex. The former overloads him, the latter is too hard to process sequentially with any real efficiency; due, once again to the spillover effect.

In observingRahul it becomes clear that one crucial aspect of his developmental disability involves a kind of "neuro-burial" process. Whatever he takes in is buried, whatever he wants to say is buried, whatever social nuances he can comprehend are extant on some level yet buried within the confines of his central nervous system. Behaviors and memories are trapped in an endless neurobiological maze or perhaps just weighted down like the gravitational pull of a black hole. While he has changed and improved considerably since childhood the burial factor seems to persist. Stuff comes out on occasion; words, behaviors suggesting a surprising insight, anticipatory reactions that seem almost clairvoyant, but not consistently. He clearly has but cannot summon this knowledge at will.

Rahulcannot simply described as being autistic. As a biological organism he must also be defined in terms of the laws of physics. Those laws mandate that in order for any type of work to transpire - be it lifting, speaking, thinking or playing a piano requires a series of energy bursts. YetRahul is faced with a problem. He appears to lack the capacity to produce those energy bursts.

That was ost evident in his early development. As a childRahul could be swayed by the wind, with head movements unavoidably drifting in its direction. Speaking to him would be pointless, since he could not power his way past that wind's distraction toward other matters.

Over timeRahul has learned, matured and improved, but he is still plagued by the lack of energy needed to focus past singular distractions, to search for and bring out responses, take on energy-demanding integrative tasks or push words out beyond low-key whisper talk. At times he can speak above the din but only with a boost from the somatic orchestra as he sings and rocks his way past an ergonomic deficiency.

His emotions and behavior make sense in that context. His avoidance of eye contact, loud noises and crowds serves to ameliorate the impact of inputs. It is as though stimulus traces do not disperse democratically around his brain. If they did it might lead to the integrative access and perceptual input cushion enjoyed by the rest of us. Instead inputs run roughshod along narrow circuits so that perception poses a constant threat.

Rahulsees these tendencies in himself and does what all of us do when faced with an aversion. He tries to avoid stimuli that entail discomfort. He knows this has something to do with an energy-effort deficiency and most of his behavior outbursts result from his frustration at being asked to expend energy he does not have. Thus he is well-versed in the feeling and threat of fatigue. He recognizes that. He tries constantly to tell us, in effectI lack the energy needed to live the way you want me to live. Yet many of us, intent on helpingRahul improve and enhance his skills through elaborate IEPs, behavior plans and service plans, insist that he engage, behave, expend energy - practice, because in our world practice leads to improvement.Rahul on the other hand fears that too much practice will lead to regression.

Rahulknows more than we think he knows and he's probably aware of that fact. One can determine this from the logic of his behavior. For exampleRahul has a penchant for worrying and his behavior clearly indicates a capacity for anticipatory thinking. That would not be the case if he were oblivious to outside circumstances, unable to comprehend, predict and memorize. Thus on some level Rahul's anxiety, worries, fears, anticipatory emotional reactions signify the presence of knowledge that he cannot readily express.

Perhaps this line of reasoning can also be applied to his odd motor behavior (i.e. self stimulation). Assuming optimistically thatRahul is knowledgeable in a latent or "buried" sort of way, he must also have some sense of what is normal. If so, why behave in such odd ways? Is it because he doesn't know any better or something else?

If he could fluidly retrieve words Rahul's answer might be that his odd behavior is employed (ironically) in order to conform to social standards. In other words, he might say that he acts this way primarily because of us. More specifically, in combining his knowledge and anticipatory capacities with his self knowledge, including an understanding of his own energy limitations, he self-stimulates to please those of us who make demands on him that exceed his energy resources. By hand flapping, noise making, rocking etc. he is not exhibiting signs of a pathology. Rather he is making a concession to (and a statement about) our own ignorance of his condition. The motor behaviors are an attempt to provide extra gross-bodily energy to meet our demands. He is "motor-psyching" himself up for the task, summoning extra power. (Imagine his dismay when instructors insist that he both engage in task and refrain from the energy-inducing actions needed to complete them). As a corollary: one cannot help but wonder if severe autism has a psychiatric component, reflecting a psychological breakdown resulting from a profound helplessness-inducing, irresolvable conflict inherent in some instructional programs that prompt task behavior yet discourage the self stimulatory (energy-inducing) behaviors needed to complete the task.

Alexander knows there is more to him than meets the eye. If appraised, he might not challenge research findings refuting the efficacy of Facilitative Communication because he is not familiar with Shakespearean phrases and does not ponder philosophical truths. Yet he undoubtedly would insist that while much of his knowledge is buried, it is extant nonetheless. If by some method his ideas and language could be "unearthed" and he were asked to explain the nature of his problem he might simply saymy motor is not as powerful as yours. In order to think, speak and do many of the things you take for granted I must borrow energy from other places in my brain and body. I operate with a power deficiency and the only way I can navigate through my world (or more precisely, yours) is to mobilize my entire mind, senses and body. That's why I do weird things. As you can imagine, it entails a lot of work and frankly I'm exhausted most of the time

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