A promise of happiness

by David Cohen / 28 July, 2007
Part family memoir - what it's like having an autistic child - and part global survey of developments in the understanding of autism, for which the author ("D" in this excerpt) travelled the globe, is <i>A Perfect World</i>, by Wellington journalist David Cohen.

At first glance you might not notice anything amiss. The boy, Eliot, has wide-set dark eyes - his mother's - and a sturdy air. He has just finished a square, gluten-free breakfast. Physically he looks fine, although when he walks across the room you do notice a loping gait. Stroll closer to the table where he remains seated, though, and try to engage him in a bit of conversation and some oddities emerge. Possibly he will avoid your gaze. On a good morning he'll fidget; on a bad morning, of which there are many, he might respond by rocking his body or maybe banging his head on the table several times, or throwing himself on the floor and curling up like a shoelace. Good day or no, Eliot will not conduct anything remotely resembling a conversation because he cannot speak in anything resembling an ordinary sentence, and because the pitifully few words he once possessed vanished around the time of his third birthday. Even though the child experiences ordinary human emotions like fear, anger, jealousy, pleasure - and hunger for love - his capacity for understanding other people's minds is missing and the natural ability to copy what other people are doing or saying is non-existent. And because he cannot copy things, the job of teaching him anything at all is infinitely the harder.

Nevertheless, Eliot is a more beautiful character than most because beauty, as Stendhal famously aphorised, is "the promise of happiness", and in his case that promise, so tantalising and elusive, fills the thoughts of those who live closest to him.

"Touch door," Pamela tells the boy, and, when he eventually complies, she offers a gentle round of applause. "That's great, Eliot, wonderful." The boy's cheerleader mum rewards him with a tiny treat. She doesn't look that old - mid-30s perhaps - and the smile she gives the kid is as soft as her Virginian accent has become after a dozen years living in the antipodes.

The exercise continues. "Yes, door!" she says. "Now touch another door. No, that's the couch. Touch door. Door. Yeah, all right! Well done! Now touch bathtub. Bathtub. Hey, whaddya doing?" Eliot has pranced over towards the bathroom - that's good, too - but then, suddenly, squealing and flapping his hands, veers off at the last moment and heads for the north bedroom. "No," his mother says loudly, trotting after him. "NOT time for lying in a bed." Eventually, he comes out of the room and heads back to the bathroom. This time, maybe? "Touch bathtub. Good boy! Now go to Mom and Dad's room ..." And so it goes. On and on. Hours and days, months and years. A mind-numbing repetition of body parts and furniture and colours; "touch" this, "do" that, be "here", go "there". It's the dialogue of the family's life.

Today, as ever, therapists are scheduled to arrive for two-hour sessions based along the same lines; in all, their support brings the couple's autism-related outgoings to nearly $1000 each week, and a bit more besides during the longer holiday breaks. Small wonder that, in the United States at least, clinicians are starting to recommend that parents of recently diagnosed children immediately receive financial counselling to help plan for a life spent living with what is an uncommonly expensive condition.

The figures are enormous. According to one American study published in April, the total societal cost of autism during the life of a boy born the same year as Eliot will on average come to $3.2 million, a lion's share of which will be eaten by lost work productivity, adult costs and therapies.

Like most parents at the time of their child's diagnosis, the couple did not know much about the various procedures available for treating childhood autism, and therefore spent the requisite period of time shivering in the dark before summoning the energy to investigate their options. Among the methodologies most commonly mentioned are what is called structured teaching (an intervention strategy designed to head off heavy behaviour problems), Pecs (teaching a child to use and understand communication symbols) and incidental teaching (a pupil-centred system involving peers in a natural setting). To be sure, no single method of intensive intervention therapy has yet been proven to be ultimately superior to another for all autistic children. But just as no particular treatment is always right, survey after survey suggests that the absence of any intensive specialist-led intervention strategy is almost always wrong.

The publicly funded support available through the New Zealand Ministry of Education's special education arm amounts to very little, at most an hour a week of speech therapy and assistance with something the bureaucrats called the "transition" to kindergarten, which was necessary in Eliot's case because his one stint at a pre-school had ended in turmoil after he had to leave for attacking other children. Having researched available treatments through the internet, Pamela and her husband decided that, in their son's case, the discrete trial training methodology, which is based on the principles of applied behavioural analysis, or ABA, seemed to offer the best chance for improvement. An Australian organisation, Intervention Services for Autism and Developmental Delay, had set up a New Zealand branch and was offering the programme in Wellington.

ABA is a teacher-directed, one-on-one activity that works by breaking down skills and knowledge into tiny pieces. Those pieces are then rebuilt line upon line, precept upon precept, over and over, in order to expand a child's understanding. When Eliot first started sorting shapes, for example, just the one shaped object was used on the table. A careful record was kept of his performance. When he could consistently perform a single-shape task, another level of complexity was added - instead of one shape, two or three or ... five. But shapes are the easiest part. A square is a square is a square, ditto a doorknob. Nouns like "mother" or "friend" are more difficult, because those are abstract concepts requiring the ability to see things from the perspective of another person. Now that's hard. Not for nothing is core autism sometimes spoken of as "mindblindedness". Eliot learns to communicate, as well, by using a system of pictorial representation known as compic. In his "classroom" are hundreds of slips of paper with symbols for words. When he wants to ask for something, he has to find the pictures he needs, which he then puts together to form a message: "Eliot"/ "want"/"biscuit".

Overseas, the reviews for therapies like the one chosen by Eliot's parents look promising. One early study discovered that nine out of 19 children exposed to ABA-based therapy over a sustained period achieved relatively normal cognitive functioning by age seven. As teens these children were found, as well, to be socially indistinguishable from their peers, a little unsocial in some cases but not outside the normal range. The same overall method is now recommended by most international experts, including the prestigious US National Academy of Sciences, which issued a report a few years ago urging at least 25 hours of weekly therapy for autistic kids.

In New Zealand, unlike in the US where government assistance is mandated in all 50 states and the District of Columbia, parents must shoulder every last cent of the programme's costs. And like D and his wife, too, parents seeking to know more about it will probably need an internet connection in the first instance, since there is effectively no New Zealand-produced literature on the subject and the government here will not endorse or fund intervention treatment or allow tax breaks to parents who must use a large portion of their own earnings to pay for their disabled child's neurological liferaft.

Eliot's therapy started in 2003, a few months before another son, Daniel, was born. At the time, his screams - Eliot's, not Daniel's - routinely saturated the dawn. Pamela decided that, if they were going to be up so early anyway, she would use the time constructively.

So most mornings she takes him to the kitchen to try to teach simple skills like rolling a ball or building with Lego; an unending routine. In the early days, Eliot would cry and scream and throw himself on the ground. But she has persisted, prompting him through the activity - putting her hands over his, hundreds and hundreds of times, in order to help him roll a ball, for example - cheering her son when he gets it right.

Over the years the effort has paid tangible dividends. His resistance has lessened, as much as the regular outbursts. But it sometimes scares his mother when she realises how difficult it was to teach him, and how far behind in all aspects of development he was at the start, and how far is yet to go. Is D suggesting for a moment that his wife's work in this area is some kind of uniquely heroic enterprise comparable to very little else that most other people experience? Is he somehow wishing to elevate parents like these on some kind of special pedestal? Of course.

By nine in the morning she will have already put in up to four hours' work. She counts down the hours until the therapist's scheduled appearance. The clock's big and crawls. Eight o'clock is always a hurdle because that is the common time for a therapist to call in with a cancellation; a development to be feared. There are times when she wipes an involuntary tear away when the call doesn't come.

By this time D has long since broken out of the house in order to pay the mortgage, working out of a small office nearby where he puts in six or seven days a week pecking out regular assignments on a hired computer - including, of all things, a weekly humour column for a local business paper. Sometimes he starts the day by flicking obscure email reports to friends. Asterisk groan asterisk. "We are moving from moment to moment with as much dignity as possible." Recipients generally have no idea what he's talking about. Neither has he. Will things get any clearer? Possibly not. The therapists are on to it. Many of them are university students or recent graduates. A couple are clueless, a few of them admirable; most, each in their own way, are quick-witted and sincere. One of the family's favourites is a young woman named Liz Goddard who has a way of helping Eliot without patronising him, and a generous, upbeat style. It's a sticky job for anyone, of course, instructing a child in such painstakingly small steps, repeating exercises until they are mastered, keeping records, ignoring disruptive and aggressive behaviour while praising and building on success. "Nevertheless," says Pamela, "it has been empowering to see that Eliot could learn, if he was taught in the right way, and that ABA provided techniques that could be used to teach him. And these have become embedded in our routines and in our interactions with him."

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