This essay is about two people who, despite their vast differences, have in common a diagnosis of Autistic Disorder.
The word autism saw the public light of day in 1911 but it had been used since the mid 1890s by the Swiss psychiatrist Eugen Bleuler who wanted to describe what he thought, as a best guess, was a feature of schizophrenia. It was subsequently used by Leo Kanner to refer to what he described as a behavioural disorder and by Hans Asperger to refer to what he described as a type of psychopathy. Today we know that autism is, pre-eminently, a pervasive developmental disorder. Please think about that word pervasive. It means that autism is in-built and dominant, it affects everything perceived by an autistic person and every action we make as a result of those perceptions. It means that it is appropriate to talk of an 'autistic person' and never about a 'person with autism' because, like it or not, the autism is one of the major characteristics of a person with the disorder, perhaps third after humanity and gender. It cannot be changed; consequently there is no cure. It isn't possible to cure such an essential characteristic; in short, autism is not an appendage. What is possible is to train an autistic person, to a greater or lesser degree, to conform to society's accepted behavioural standards and although we sometimes regard these as meaningless, many autistic people are nonetheless grateful at having the way to acceptance shown to them.
Teaching autistic children isn't for the doctrinaire or the faint-hearted: you need to believe in what you're doing, have an intuitive understanding of an autistic child's view of the world (without which you can't successfully teach one) be firm, consistent yet also flexible enough to try different strategies and to tailor your approaches to the different autistic children you encounter. There are quite a few people around who aren't able to do this and Hamish Kemp, for one, has developed hundreds of ways to gleefully get the better of them.
For quite a while we thought that autism was a disordering of the brain's capacity to process sensory input and that it was this physical disorder that produced the non-standard behaviours. New research by Simon Baron-Cohen, among others, is beginning to indicate that there is such a thing as an autistic brain; that is, a brain which works in the same way for all people labelled as being on the autism spectrum but somewhat differently from a standard brain. Some of Simon's very recent studies, involving people from right across the autism spectrum and ranging in age from quite old down to ten, are producing very interesting results which seem to confirm this position. No two autistic people present with exactly the same pattern of skills anymore than any two non-autistic individuals have the same pattern of skills. One major way in which autism differs from the norm is in the area of social understanding. A neurotypical baby will, at three months, be able to understand who its parents and sibs are and be able to distinguish between home and a strange place. This is not true of autistic babies at the same age, none of whom can do this. At age four, many of us can do it and the degree to which we can is a major determinant of where we are placed on the autism spectrum. Over time, many of us become aware that there is a society, and that it has expectations and laws. Most of us know this, eventually, but quite a few of us don't care because we do not have the social instinct which convinces us that caring is worth our while.
Hamish is twenty one. His delivery was normal and so was his weight. At five weeks he suffered a stroke and one side effect was that he became blind and did not recover his sight until he was four. His first educational institution was consequently the Royal Victorian Institute for the Blind in Melbourne, Australia.
The one thing most autistic people can be counted on to have in common is fear. Fear is something that runs like an Ariadne's thread right through Hamish's life and it is the basis for many of the behaviours for which he long ago became well-known. Not all, but many.
Once Hamish began to recover his sight he became ineligible to attend RVIB and transferred to Ashwood Special Developmental School. It was there that he was given a diagnosis of Autistic Disorder and, quite obviously, whether stated or not, one of intellectual disability as well. It's worth noting that tests for intellectual ability are based on those for non-autistic children which, to me, weakens them to the point where I treat the results with great scepticism. Armed with that diagnosis he transferred again, this time to Irabina Special Developmental School, which is where I first met him, aged about 7, very distressed and apparently inconsolable despite the best efforts of the staff, in a class for low-functioning children.
A couple of years later I saw him again, at his present school, where he distinguished himself by exhibiting a range of behaviours as remarkable for their intensity as for their inappropriateness.
It wasn't until even later, when by chance I visited his school on his eleventh birthday, that Hamish did something that caused me to take special notice of him. He was waiting with unconcealed impatience for his birthday cake to be cut. First, he had to endure "Happy Birthday" and then some agonising moments while plates were produced and then the cutting of the cake. When at last he had a piece, he crammed it into his mouth and over most of his face as well. His teachers were concerned and asked him why he did it. Both turned away to get tissues without waiting for an answer so they didn't hear him say, very softly and through a mouthful of cake, "Happy birthday to me."
Later that year I was approached at a conference by one of his teachers who asked me whether I would visit his school, take a look at him and perhaps offer some suggestions as to his management. What I found was a boy who sat by himself in a small locked playground, who frequently removed some or all of his clothes or who ripped them up and threw them over the fence. He was likely to attack adults who went near him and, if he was feeling particularly malevolent, children as well. By attacking, I mean hitting, kicking, pinching, biting in particular and, occasionally, concerted frontal assault.
Hamish's behaviour in class was appalling. He resisted nearly all attempts to get him to participate and, if the teachers insisted, wouldn't hesitate to physically assault them, usually by biting.
His behaviour outside the school was even worse: he would dash out into traffic if not constantly physically restrained. He would suddenly let his knees buckle, often in the middle of a road, thus causing his full weight to hang from the arm of the person restraining him, and he would usually manage to bite them in the process. Once he was forced back onto the footpath, he would, in all likelihood, begin all over again or just soil.
Toileting was always a major issue. Hamish was not toilet-trained and had many, many ways of making the cleaning process as protracted, drawn-out and horrible as possible. He had a very large range of behaviours that would intentionally result in feces being spread over himself, the toilet, and preferably over the person cleaning him as well. All without actually touching it with his hands. He liked to suddenly cross his legs just as his carer was removing his soiled underpants and sit there, grinning. As soon as the carer asked him to uncross his legs, he would bite them if he could, or attempt to rip out some hair, or open his legs suddenly in the hope that the contents of his underpants would be catapulted into the carer's face.
Hamish was considered to be almost impossible at home. His room had no furniture that wasn't built-in; the window was boarded up and he slept on a mattress on the floor because he had a long history of breaking beds. For fifteen days each month he was placed in a respite house run by the Department of Human Services. The line of people who thought that they could manage Hamish but left with their reputations dented had, by the time Hamish was twelve, become very long. Nearly as long as the line of his bitter enemies. And this was the person whom the school saw, every day. So why did anyone bother with him at all? Well, because you, as teachers, are dedicated to giving the kids the best outcome possible, or at least I hope you are. Why did I bother? Because of that chance remark I heard him make at his birthday party, and my consequent realisation that here was a person with considerable intelligence and a sense of humour.
If Hamish was so soiled as to need a shower, it took two people to undress him and, once he was under, he would turn the spray onto staff in much less time than it's taken you to read about it. This sometimes meant that three staff members were involved: one to hold the spray and two to wash Hamish, who revelled in the attention.
It wasn't hard to understand that many of Hamish's behaviours were designed to draw attention to himself, nor to take it one step further and infer that he felt that he was being ignored, underestimated or just left out. Certainly, he was very unhappy. It didn't matter to me then why he felt this way, or whether the presumptive underestimation had given rise to the behaviours or vice versa; it seemed important to give him some attention and see whether he responded.
He did. He didn't meet me halfway, more like 80% of the way and he was clearly delighted that someone was taking an interest in him. Not that the behaviours stopped overnight. Far from it. Hamish's attitude clearly was: "OK, you want to be my friend. But can I respect you? Are you going to stick around or are you just another professional who's taking an interest in me for a while and then going away? Can I really trust you?"
Several months of concerted bad behaviour followed, just to test me out. For well over six months I was never without a mark, usually several marks, from Hamish. My response to his behaviours was a mix of patience, laughter, anger and brute force. Force as in restraining him from running out into traffic or in injuring himself or other people. Force as in being prepared to grapple with him (as opposed to just standing there or running away) when he attacked. Hamish understands force, and unless he's convinced that you're prepared to use it won't respect you.
Eventually, Hamish's behaviour with me, and I can't stress that enough, he doesn't generalise, began to improve and I felt confident enough to take him into my home for a couple of days. This was an important and necessary step. It showed him that someone had enough interest and confidence in him to be able to do it, it demonstrated to others that he could behave reasonably if he wanted to and, if it worked, would give me confidence that I was moving in the right direction.
I was presented with a whole new range of issues to work through and he had a whole new range of opportunities in which to get me. He fought me on an island in the middle of a major traffic artery. He had a tantrum on a crowded commuter train that forced me to hold him in a double armlock on the floor of the carriage. At home there were other issues. Who was in charge of the answering machine? the computer? the biscuit tin, etc? Well, I won all those but it took quite a while. Hamish's first few visits were pretty fraught, as well as physically exhausting, and for a while I considered ending them altogether.
However, about the middle of 1997 Hamish began to settle down and to clearly believe that I was going to be around for the long haul. He not only stopped his physical and mental games but began to co-operate and to consciously make life easier for me just by doing a few chores around the flat when I asked him to.
Early in 1998 a few things started to build up for me and for a couple of days I became quite depressed. Hamish, who was spending two weeks with me at the time, noticed this immediately and at first became quite agitated because I wasn't functioning in the way he had become used to, which made him feel insecure. Eventually, he decided to take action. While I was resting on my bed he came into my room, lay down next to me looked me full in the face which, for an autistic person, means a great deal and said: "Finish! Happy now, you." It worked, by the way.
For the next several years Hamish was a pleasure to have around. He helped to prepare meals, to put dishes away, took dirty dishes to the sink without being asked and even learned to make his bed. He has a quick intelligence, a wry sense of humour and was always quick to participate in clever musical games: for example he would buzz a musical phrase and I would buzz it back but with one wrong note. He then added one wrong note, or sometimes two and we'd end up with some crazy musical construction that sounded nothing like the original and got a good laugh while we were doing it.
One great way of calming Hamish down was to play a video from the Windows 95 installation CD called goodtime.avi. The track was sung by Edie Brickell and came from her debut album "Picture Perfect Day". It was shot in New York City and the tune was laid back and very cool. About halfway through, there was a shot of kids laughing while playing under open fire hydrants. It never failed to make Hamish laugh and he'd often ask for it, insisting that I play it five or six times.
At the beginning of 1997, Hamish was placed in a class for higher-functioning individuals than those he had previously associated with, and a teacher of great experience, strong personality and absolute consistency was put in charge. Assisting her was a much younger teacher in his mid-twenties who by nature was mild-mannered and artistic. He had an intuitive understanding of autistic children, something I became quickly aware of just from the nature of the questions he asked.
These people taught Hamish until the start of the 1999 school year, and he flourished. It took a great deal of hard, unrelenting slog to get him to the point where this word could be used. His antisocial behaviours stopped and his confrontational behaviours dwindled but he still had a long way to go. Most of the time he complied with the instructions he was given. Additionally, he began participating as part of the group although it took a great deal of work to get him to do this. In the playground, he was still aloof and showed no sign of wanting to mix with the other children.
Not all the staff at Hamish's school were happy to see his progress. Refer above to the words "bitter enemies". In the next school year and in all subsequent years, Hamish was placed once more in classes for low-functioning individuals. It was rather scary to see his section head go through a list of possible ways in which Hamish might have made progress and just keep saying "No, no, no, no..." She was one of those people Hamish absolutely hated and he'd do nothing for her. He has left school now and is in an adult program where he is happy but not particularly challenged. He is not operating at anywhere near his full potential. He lives full time in a government-run house with four other autistic people his age.
In around 2002, panic attacks became an issue. In that year I was faced for the first time with having to deal with an adult person out of control on a busy street. Now, unfortunately, Hamish needs two people to be with him when he goes out. Nobody knows how long this situation will last but there's no reason to think he won't grow out of it.
Hamish saw the pages at this site devoted to him and broke into a big grin. He learned several years ago to sit in the front seat of a car without touching anything or distracting the driver and, in addition, began to wear a seatbelt. He did this because he learned that he could find himself in pleasant places if he allowed it to happen. The picture of him on another page cruising down a river on a paddle-steamer is one result. There are times when he's still depressed and probably there always will be, but he continues to get happier overall. Until his panic attacks began, Hamish spent several weekends each year with me and was always attentive, responsive and happy.
Jordan Robottom is 18 and quite unlike Hamish. He is the fourth of six children and very bright, being particularly skilled at mathematics. He was born at 36 weeks by caesarian section and weighed in at 3lbs and 12 ozs which I think is around 2.3 kilos but don't quote me. He spent the first 6 weeks of his life in special care nursery. His mother writes: "The oddest thing about him was when we bathed him I would submerge him with just his face above the water and he would go to sleep...it was like magic and happened every time he was submerged and just allowed to float....he spoke in what I call his own language for the first 4 years of his life ...I can remember taking him to a speech therapist. He had been referred for not being able to say 'fish' properly and all I could do was say to the therapist 'listen to Jordan, he can't speak' ...but the other kids seemed to understand him and he had no problems making his needs known ....it was just his own special language and then one day he just started to talk - like that ...Jordie was always active and went through a stage when he would dash naked through the house with only a pair of gloves on....while he was growing up his name was the one most often yelled out as he investigated everything but he never seemed to play with his brothers and sisters ...he would more follow them around and do his own thing.... ADHD and autism were diagnosed during primary school as he exhibited some rather eccentric behaviours such as not mixing with the other children, having trouble following instructions and staying on task although if it something he is interested in he will stay on task for hours on an end ...he had a wonderful teacher aide called Toni who supported Jordan both in and out of the classroom ...he loves sports (soccer and tennis) but has trouble in team situations .... Jordie's motto has been to take no shit from anyone, which saw him suspended for three days ..... the school talks on his problems with making friends etc...the funniest thing about Jordie was when he was about 8 he was sitting quietly next to his uncle and all of a sudden said 'I a lion' and promptly bit my brother who jumped 30 feet into the air...he has an incredibly high threshold for pain which is always a concern as we are never sure if he has hurt himself seriously or not and is tactilely sensitive in his mouth sticking to toasted cheese sandwiches, scrambled eggs, and yoghurt and breakfast cereal as his diet."
He has always done well academically but been deficient in social skills and in what is called "theory of mind". He has always been anxious and, because he also has Attention Deficit Hyperactive Disorder, very excitable and unable to settle. His hyper levels of anxiety are due to, among other things, being unable to make any inferences about other people with any surety of being right. Jordan is a clear and voluble speaker but being bright has not always been a help to him; it has often meant that he could think of more things that could go wrong. For a few years, Jordan was a little less anxious because he was learning to identify the triggers and to use his intellect to reduce or nullify their effect.
As I stated at the beginning of this essay, autistic people either don't have a social instinct or have it in a rudimentary form and consequently are born into a world that's very confusing and remains that way for many years. Often traces of that confusion, and the consequent fear that it generates, can persist well into adulthood and perhaps for life. Not having much or any social instinct also leads to unusual and/or inappropriate social interactions which can cause rejection. When that happens, an autistic child will become even more confused and, in addition, is likely to lose self-esteem.
Hamish and Jordan are such individuals. Hamish has found the world confusing for a long time and perhaps has not had much confidence that things would change. The world has often demanded that he conform to standards that he simply hasn't understood and he has reacted accordingly: with fear of the action required of him and anger that he has been asked to perform it at all. This, combined with a family trait for stubbornness has made for an extremely difficult child.
I should say that I'm oversimplifying here: Hamish is a complex person with many aspects to his personality that I don't have time to discuss. I've focused on some aspects of his fear and consequent anger but there's much more to him than that.
Although Jordan is doing well academically, he was until recently alone in the classroom and did not seem to have any friends. This was very much more something his school saw as a problem than did Jordan. For a long time he had no real idea how to make friends but once he figures something out he's a fast learner and has made and kept one good friend for several months now. His self-esteem improved a lot, especially after he got a girlfriend but, after a few months, the inevitable happened and they split up.
As you know, this is a situation in which nearly all teenagers will find themselves sooner or later and often they can become burdened with self-doubt. Some become clinically depressed but get over it pretty quickly. Although Jordan terminated the relationship, his self-esteem plummeted to critical levels and he needed two weeks observation and counselling in a psychiatric hospital. He does seem to be slowly improving but I believe it wouldn't take a very big issue to cause him to relapse. He has a psychiatrist who is slowly leading him step by painful step to understand what caused the chain of events and hopefully this will lay in enough groundwork to prevent further catastrophes. I've never pretended that being autistic is easy. We're the ones who have to learn slowly and painfully how to relate to neurotypicals. Many of us never get as far as Jordan in a lifetime.
The outlook for Jordan is reasonable, largely because he's intelligent, tries very hard and has total family support. His ambition is to do well at school and university so that he can get a good job and then marry and start a family. There is no doubt that with enough determination he can achieve these absolutely usual aims. He is quick to defend his rights, does not tolerate fools very well and has a quick temper. He does not have Hamish's bumptious attitude but definitely exceeds his resilience.
Copyright Lindsay Weekes 1998. Updated July 2007.
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