Emma's mother had written DEAL up in a parents' newsletter, and more parents asked us to see their children. Marco was 13 when he came to DEAL for the first time in August 1987. A good-looking boy, with black hair and an olive complexion, Marco was tall for his age and solid with it. His father ran a fish and chip shop, and Marco liked the product. He was attending a school for children with intellectual impairments and had previously attended the same kindergarten as Emma, a kindergarten which had been set up just for children with autism. The standard practice was for children with autism to attend a segregated program, with a very high staff ratio and a strong emphasis on behavior modification, until they were considered ready to be ‘integrated’ with other children or reached the age limit for the kindergarten program. A few children, the so-called higher-functioning, went on to ordinary schools, but most were placed in segregated settings together with children with other disabilities. Sorting was done on the basis of IQ scores - the name of the school Marco was attending told me that unlike Emma he had been assessed as having an IQ of 50 or above.
Our experience at DEAL was that if a person's speech was severely impaired then regardless of their diagnosis their handwriting was usually also severely impaired. Marco was a partial exception. He had far better hand skills than most of DEAL's clients (including most of the people with autism). He could actually write intelligibly, although his writing was immature for his age and looked more like the writing of a seven-year old than a 13 year-old. He used to write shopping lists or lists of numbers, but nothing else. Marco's speech was mostly single word utterances or short phrases, and sounded immature because he abbreviated words -‘puter’, say, for ‘computer’. He tended to perseverate on topics, saying the same thing again and again, and often replied to a question by repeating the last word said. Numbers were a particular obsession and he used to memorize and repeat the winning lottery numbers shown on television each Saturday.
Marco had in fact been motorically advanced as a child - he'd started to walk at the age of nine months, and his development had proceeded perfectly normally. Early photographs show a chubby handsome baby, with black curly hair, olive skin, and a wide smile. He'd babbled like most children, his language development and social development had been going well, and then he'd come to a stop. As Marco put it later,
I NEARLY TALKED RIGHT, BUT THEN I STOPPED.
Marco was finally diagnosed as autistic at about two and a half by which time the smiling baby of the early photos had been replaced by a worried-looking toddler who often looked away from the photographer. He'd had speech therapy between the ages of 3 and 5, but nothing thereafter.
By the time Marco came to DEAL in August 1987 the production of toys that spoke was well under way, and many educational and not-so-educational talking toys were available. Some toys could be used for communication aids, and the ones that couldn't were still very motivating for most children and could be used to teach pointing and eye-hand co-ordination skills. The one we found most useful was called My Talking Computer, which could be adapted for assessment. Marco loves computers and gadgets of all kinds, so when he came to DEAL the problem wasn't getting him to work but getting him to restrain his attention to the piece of equipment I actually wanted him to use.
Right from the start Marco's obvious problem was perseveration. If he got a response - if he pressed a button, for example, and it spoke - he'd keep after that response, pressing the button for minutes at a time. If you gave him a multiple choice test he'd get his first answer right and answer every other question by pointing at the same spot. The easiest way of stopping him from perseverating was to pull his hand back as soon as he'd made a selection, holding him back until the next question had been asked and you could actually see him switch his attention from the item he'd already pressed. His eye contact with the toy was good; unlike Emma he kept his eyes on what he was doing.
Using the Talking Computer Marco demonstrated good word recognition skills and constructed an excellent sentence from a restricted set of written words. The Talking Computer has a sheet of some 30 words which can be used to compose a sentence or a story which the toy will then speak aloud. I asked Marco to make the longest sentence about one of the pictures associated with the toy that he could, and his sentence was "I see a yellow bird and a green tree and a flower on the grass. " Not great literature, but fully grammatical, much longer than any sentence he was remotely likely to say and including the little words, the articles and conjunctions, that Marco generally omitted from his speech, like many children with autism.
Marco went on to point correctly at named letters on an alphabet sheet and it seemed appropriate to try a Communicator. I showed him how it worked and went through the keyboard with him and asked him to type his name, which he did successfully. Throughout Marco had been saying ‘puter’ at regular intervals and pointing at the laptops on the shelves. It was clear that he wanted to try to use one of the computers. I pretended not to understand and asked what do you want? and he typed I WANT TO USE SOME COMPUTERS Why? BECAUSE REASON EXPLAINS EVERYTHING. DO YOU USE COMPUTERS? he asked me. Yes, I said, and what would you do with a computer? He typed USE IT MATHES (sic). Why do you like numbers? I asked. NOT PEOPL. 11 IS MY FAVORITE NUMBER.
I got down another toy, called the Talking Teacher, which said the numbers and set a range of sums. He enjoyed fiddling round with that. It was particularly good for his mother to use with him, because there are only ten numbers and it was easy for her to facilitate him; his movement to the numbers was clear, and it was simply a matter of pulling him back and stopping him perseverating on a particular number or alternatively sounding every number along the row.
It was several months before we saw Marco again and at the next session he didn’t behave nearly as well. He kept going to the laptops to get them to say his favorite numbers, and if his mother or I tried to stop him he'd become aggressive. At one stage he was so angry he threw the ordinary typewriter on the floor. In a pattern that was to become familiar he behaved worse if his mother was in the room. Marco clearly loved his mother dearly, and it seemed that ironically this was the problem - he was more tense, and therefore more likely to lose control, in the presence of somebody he cared about than when he was with someone such as me with whom he had no significant relationship. Between battles about aggressive behavior Marco typed sentences fluently, or as fluently as one can type using one finger, providing I was able to prevent him perseverating on his favorite words or favorite numbers. If standing up, he was able to type with just my hand on his shoulder. It's quite common for people with disabilities to find using a keyboard easier when standing up and typing with their arm at full stretch rather than having to lift it against gravity as they do than when they're sitting down. Strength isn’t necessarily lacking - after all Marco was strong enough to throw typewriters around - but endurance is a significant problem for many people. When trying to move the same muscles repeatedly, as is required in speech or typing, it is as though the signals progressively degrade, causing a deterioration in the clarity of speech and a proliferation of typos in keyboard use. If the problem is severe the spoken or written output quickly becomes unintelligible.
Marco’s mother had tried to use a typewriter with Marco between appointments but he had become obsessive about numbers and she had floundered. Marco was much larger than she was, and it was very difficult for her to restrain him from simply punching out his favorite numbers on the number keys.
In personality, Marco differed from Emma in almost as many ways as he could - while Emma was retiring, passive and timid, Marco was off-handedly sociable, brash and demanding. Emotionally fragile, Emma would burst into tears at the slightest criticism. Anything but fragile, Marco resisted criticism forcefully. After a session with Emma I often felt like Alice drowning in the pool of tears. After a session with Marco, I often felt I’d done 10 rounds with George Foreman (not because Marco had actually hit me, although he wrestled with me for control of the equipment, but because the battle of wills was so intense). In fact, Emma’s tears may have been more effective in getting me to change my approach than Marco’s resistance was. This had nothing to do with sympathy, and everything to do with practicalities. Marco could work when he was angry, Emma couldn’t work when she was crying, so it didn’t matter if I upset Marco and it did matter if I upset Emma.
The following week Marco's teacher came to the appointment and Marco was, thank goodness, a different boy. He sat calmly in the waitingroom while I talked to the teacher, and came in and sat down at the table as soon as I called him . No attempts to take the laptops off the shelves; instead he typed out a reminder that he'd asked for a computer last week. I asked him if he would like to use one this week. He typed out yes please, and so of course I produced one. The system I gave him was called a Trine communication aid; it was based on an Epsom HX-20 laptop, definitely an early generation system, but for the first time he was working with a computer that could speak whatever he typed. It also had an on-board printer. The advantage, from my point of view, was that if Marco typed rubbish - strings of numbers, or his favorite obsession words - they would come up on the display, and if I was quick I could erase them before he made the computer speak them or print them. He typed HOLD ME TO STOP ME DOING SILLY THINGS, which I suppose is one definition of facilitated communication training.
I'd made up a special ABC chart with no numbers on it, and I gave it to Emma for her to try at home. His teacher, having seen what Marco could do, was going to try to get him to use the school computers productively instead of simply using them to type his favorite numbers and obsession words. Before the end of the session I talked to the teacher about Marco’s difficulty in inhibiting unwanted movements. Yes, she said, she knew what I meant. Her husband, who was a lecturer in computer science, had some of the same problems - if he started a movement sequence, he found it impossible to stop. "If he's started to shut the door of the refrigerator, he just has to finish the movement, even when he can see me coming over with a full jug of milk in one hand and a tray of icecubes in the other." We all have different combinations of impairments, but we all have impairments.
By the next session Marco had done a small amount of spelling on the ABC board at home. His mother and father were both from Italian-speaking families, and Emma wanted to know whether Marco understood any Italian. To find out she wanted to say some sentences to Marco in Italian and have him type the English translation to me. Even if Marco did understand the Italian, of course, it didn't necessarily mean that he'd be able to translate it, but it was worth a try. If he was successful it would not only show that he understood some Italian but it would also show, my Italian being limited to ‘ciao’ and ‘arrivederci’, that he could produce language without any cueing from his partner. Emma said a number of sentences in Italian. After each sentence she asked Marco to type to me what it meant in English and he did so. She was satisfied by the demonstration; apparently his translations were very accurate (I had no way of telling, of course). Then I asked him to type the Italian for some English words - what's the Italian for chair, and so on - and his mother said that while his terminations were a bit shaky he wasn't doing badly.
At the last session before Christmas Marco and I had a massive confrontation over, of all things, the word ‘bread’. ‘Bread’ was one of Marco's obsession words - that is, he would type it repeatedly - and it was also, like most of his obsession words, an automatic completion word. If you gave him a question to which the answer started with the letters of one of his obsession words, the answer you would get would be the obsession word, even if he was able to answer other similar questions correctly. For example, if you asked Marco why a car had brakes he would type 'to stop' without difficulty. If you asked "What do you press to stop the car?" he would type BREAD. He presumably intended to type ‘brakes’, but ‘bread’ was, because he'd typed it so frequently, such a very well established motor sequence for him that it came out instead. Because ‘bread’ was an obsession word, too, Marco didn't necessarily accept interference in his typing very amicably. The only strategy I ever found to tackle this problem was to work through it. I would give Marco a spelling list of words that started with B but did not have R as the next letter, so that the minute that I saw him going to R I would be able to pull his hand back and say "No, not ‘bread’; what's the right answer? " Once he was successfully handling words that started with B - Butcher, Baker, Bun - we then went on to Brood, Brilliant, Brand - words that started with BR, but where the next letter wasn't E . Sometimes Marco would still hit the E before I could stop him, but I could see it come up on the display and generally erase it before the full word was finished and spoken. I'd then hold his hand for a minute to inhibit him and say 'OK, next letter' and he'd go on. Once he was handling words starting with BR we went on to words starting with BRE, and then BREA (and at this stage I was having to draw on the dictionary). While the process was effective, it was very stressful - I was continually interfering with Marco's typing, preventing him from completing what had become an automatic movement pattern - and on this occasion Marco ended up chasing me round the filing cabinets while I tried to field the equipment he was tossing on to the floor. And, of course, once we'd worked through the entire sequence to BREAK we then had to repeat the procedure with each of Marco's other obsession words. It wasn't a complete answer to the problem, if only because the obsession words still tended to surface on days when Marco was tired or tense, but it did help.
We lent Marco a Communicator to take home over the summer vacation - just as well, because we didn't see him again for a full three months. He and his mother had been involved in a car accident, and he was brought to his next appointment by his father Gino while his mother recuperated. Marco talked about the accident, which had clearly upset him greatly, and typed FORD WAS DODO MUM WAS OK (as a driver). Gino confirmed that the other car in the accident had been a Ford and had been in the wrong. Marco carried out an adult-level multiple-choice reading test quite well. He could point to the answers independently - with the complication, however, that he tended to say aloud any of the words on the page that he could say, whether the words were part of the correct answer or not. The answers he was pointing to were correct, but if instead of asking him to point you'd asked him to read the correct answer out he would have got a very low score.
I put a question that gently probed his ability to put himself in other people's positions. "Why do many snorers have black and blue ribs?"
Marco answered REALLY I DON'T KNOW
"Have a guess, have a guess."
IS IT BECAUSE THEIR WIVES HIT THEM TO WAKE THEM UP?
As character analysis this doesn't sound like Henry James, but people with autism aren't supposed to have any insight into character at all; it was recently suggested that they actually have an innate cognitive inability to imagine another individual's state of mind.
At this session, the first with his father present, Marco's behavior was excellent. There was very little of what I called rubbish speech - lists of obsession words, numbers - and only one episode of rubbish typing. He was calm throughout and stayed seated for an hour, the longest time he'd ever spent at the table in one stretch. Rubbish was a constant problem; sometimes even when Marco was typing appropriate spontaneous sentences an irrelevant phrase would come in out of the blue. At his school the teachers had, every morning, written ‘Today is ...’ on the blackboard, and it occasionally surfaced in Marco’s typing: I TODAY IS TUESDAY TRY TO BEHAVE BUT IT DOESN'T HELP.
The occupational therapist had told me of a technique that was now sometimes used with people who had perseveration following brain injury. The idea was to interpose an unrelated action between two desired actions - to break flow, to force the person to think, to break up the patterns. I'd watched an occupational therapist work with a girl who perseverated in pointing, and what the therapist did was to ask her to touch her nose after pointing to each selection. It had worked then, and what had worked with post-trauma perseveration might also work with autistic perseveration. You can't have people touching their nose each time they hit a typewriter key, however, so I put a red sticker on the Communicator's battery and asked Marco to touch it between each letter. It worked really well - Marco learned the system quickly, and soon got into a rhythm. Suddenly I was no longer pulling his hand back after each letter - he was moving his hand back himself. I hoped that this meant he'd internalize the movement pattern more quickly.
Meaningful typing had previously been impossible for Marco due to his perseveration and his inability to prevent his obsessions intruding. Since coming to DEAL he'd had had a facilitator to give him the impetus to pull his hand back, and this had enabled him to get out what he wanted to say. Up to this point, though, it hadn't improved his inability to type without facilitation. If Marco went up to a keyboard at school and there wasn't anyone there to slow him down, he produced the same strings of numbers and the same unrelated words that he had before. The technique of providing an alternative target made an immediate difference to how easy it was to facilitate him, and he immediately became more fluent in his Communicator typing both at the Center and at home. His next session, a couple of months later, was the first at which he typed neither numbers nor obsession words.
Marco's school principal and his class teacher both attended his next appointment. His head teacher had previously been quite understandably skeptical about the whole business, but he'd become convinced of Marco’s abilities after an incident at school. Marco had lost his temper, behaved atrociously, and thrown furniture around. His mother Tracey had been called and told to take Marco home and that he was suspended for several days. On hearing these glad tidings Tracey lost her temper and demanded that Marco to tell her what on earth he'd been up to and what his excuse was for losing his temper. In front of the school principal Marco had typed out a full and accurate description of the incident and the events that had preceded it. He'd left his class with his teacher's permission, he said, to get a drink. The deputy principal had stopped him and sent him back to class. Marco didn't have the speech to explain that he had permission, there was a confrontation, and he'd lost it.
During this visit Marco correctly answered questions asked in Italian by his mother and completed a crossword puzzle with his teacher. As he'd previously refused to do anything useful with the teacher this put the icing on the cake for the principal. We'd found by this stage that it was often easier to get the children with autism using communication equipment with new facilitators if we provided highly structured activities such as crossword puzzles that required no original composition and that had no emotional component to them. They also had predictable answers, enabling the facilitator to see immediately whether the student was making a reasonable attempt at an answer or going completely off on a tangent.
This visit came about a year after Marco had first attended DEAL, and after that everyone's efforts were concentrated on finding a regular high school for him to attend. The language that he was using now, the work he was doing, weren't up to his age peers in some respects (after all, he hadn't had the educational exposure they'd had) but they were so far above what he’d previously been expected to produce that it was clear that he was moving outside the range of special school education.
At this time I started allowing Marco to use the Apple IIE. We had set it up with a simple speaking word processing program called Talking Textwriter. He was able to use it most successfully, and the sheer quantity of output he produced at his first session - which coincidentally took place exactly a year after his first DEAL appointment - was extraordinary. What was also enormously interesting was the type of sentence structure and the complexity of the language he was using - really just very ordinary language. As he had been doing for some time Marco talked about his desire to type independently, and was able to do some independent typing on the Communicator provided that it was positioned low down so he didn't have to reach against gravity. The only problem with this was that it was harder and more stressful for him, because without external inhibition he had to try to prevent automatic completions coming into his typing. His overall behavior deteriorated during the times he was trying to type without support. I MEAN TO BE GOOD THEN I GET UPSET AND FORGET. I THINK I'VE GOT A WAY OF GETTING BETTER. I TRY TO WALK AWAY BEFORE I LOSE MY TEMPER.
Marco was now using a keyboard successfully at school with his teacher, and at his next appointment he brought in an English assignment he'd done at school - a letter to the editor on the topic of the integration of people with disabilities into society at large. Marco's letter read in part WE ARE ORDINARY KIDS AND WANT TO BE TREATED AS SUCH. PLEASE GIVE US A CHANCE AND I KNOW WE CAN SUCCEED. YOU MUST NOT BELIEVE THAT WHAT YOU SEE IS ALL THAT THERE IS TO SEE IN US. By this time Marco had started erasing his own automatic completions; if he typed ‘bread’ for ‘break’ he would immediately erase the ‘d’ and substitute ‘k’ without any prompting from his facilitator.
GLAD TO SEE YOU HAVE YOU GOT ANY IDEAS OF WHAT YOU VERY MUCH WANT? I SHOULD LIKE TO GIVE YOU A PRESENT. Not a bad idea. He told me that he would be buying it with money he got from his grandmother and asked me did I have a coffeepot? Given the amount of coffee consumed at DEAL this was a somewhat superfluous question. He decided on a mug - YOU ARE GOOD TO ME AND I WANT TO GIVE YOU SOMETHING. I complimented him on a new top he was wearing and he typed I NEED TO LOOK GOOD BECAUSE I'M DISABLED. I GET NEW CLOTHES ONLY IF I'M GOING SOMEWHERE SPECIAL. I'M KOOL IN MY RED WINDCHEATER. OK?
Cool was all very well, but he knew what his priorities were. TO LEARN TO TALK IS THE MOST IMPORTANT THING IN MY LIFE. ITS ABSOLUTELY IMPERATIVE THAT I LEARN TO CONTROL MY BEHAVIOR OR I'M OUT. AND I REALLY MUST SUCCEED.
Marco started at his local secondary school the next year. By this time he was fourteen and a half, a bit older than the other students in his 9th grade class. It was an enormous step for him to move out of the small protected environment of the special school to a large high school campus. Fortunately, he'd been lucky in his choice of school, and staff and students couldn't have been more supportive.
I had a call from the principal a couple of weeks after he'd started. Marco had lost his temper rather badly, the deputy principal had been called, and Marco had kicked him. When the principal was been called in to help sort things out, Marco kicked him too. High school principals are not really used to being kicked, at least not in Australia, and it wouldn't have been at all surprising if Marco had been expelled immediately. The principal wasn't even ringing up to complain about the student we'd been instrumental in sending his way. He was merely ringing up to see if we had any suggestions about how to handle such behavior. My response was purely pragmatic; given that Marco did have a real interest in how he looked, we should take advantage of it to tell him that if he ever tried to kick anyone again he would immediately have his shoes removed, which would both make him look ridiculous and ensure that if he did kick anyone he would do little damage. They implemented the suggestion, and it worked like a charm.
This incident apart, Marco's integration was surprisingly trouble-free. Certainly there were times when he did lose his temper, but these became less frequent as he settled in. There was fortunately a lot of philosophical and practical support for integration in Victoria at that time, and so resources were there for Marco almost automatically; he was entitled to have an aide with him all day, and the school also had a specialist integration teacher whose job was to support all the kids with disability in the school and liaise with home, class teachers, and everyone else in the school community. Marco's aides came to DEAL for training. They started off doing structured exercises such as crossword puzzles and picture captions, the same kind of thing that we'd found previously were useful in breaking the ice with new facilitators, and surprisingly soon Marco was participating in the regular work of the classroom. He obviously needed to do some catchup work; as Marco's mother now had two young babies, that work had to be sandwiched in at school. Outside the classroom Marco was able to do some independent typing, but in the classroom he really needed the physical contract from his aides. There was certainly more stress in regular school, and Marco found it difficult to inhibit his automatic completions without his aides to slow him down. As he became more confident, he did his math independently on a keyboard. He could also type short answers independently but would always seek support for longer passages, reaching for his aide’s hand and taking one of her fingers in the palm of his hand. He would then type with his index finger, carrying her hand around.
Despite the occasional confrontation, which became less of a problem as he matured, Marco was a student it was surprisingly easy to like. It may have been too much to hope that the other students, themselves in the throes of adolescence, would become close friends with someone who would unpredictably start reeling off lists of numbers or catchphrases from commercials, but they accepted his eccentricities surprisingly well. Once they got to know him most of his aides and teachers became fond of him, despite the difficulties his obsessions sometimes posed. The reason for this was his connectedness; Marco thought about other people, and while he was just as egocentric as most teenagers, he worried about his family and his aides and his disability and the world at large. This pervasive anxiety was one thing he did share with Emma. Neither of them fitted the stereotype of the autistic child rocking in a corner, rejecting human contact, lost in a world of his own. While Marco and Emma both had real problems with social fit, problems which were exacerbated by their speech difficulties, and both had routines which served to cut them off from the world on occasion, they were very conscious of other people and aware of being different. Unfortunately, awareness of a problem doesn’t mean you can fix it, and wanting to be the same as the other kids didn’t make them the same.
Nonetheless, everything seemed to be on the improve for them. The same could not be said for me. In the disability field each diagnostic group has its own set of professionals, who don’t necessarily have any contact with the professionals working with a different diagnostic group. Therapists who work with children with cerebral palsy may never meet a child with Down syndrome or a child with autism. Even a child like Anne, who had cerebral palsy but was also labelled as mentally retarded and thus placed in the retardation system, would have no contact with the cerebral palsy professionals. Therapists who work with adults with acquired brain damage may never meet children with cerebral palsy whose physical problems are similar. Therapists who work with perseveration in post-trauma patients never come across people with perseveration and autism.
DEAL’s work, and hence my work, was directed to the specific problem of inadequate speech, and not to any specific diagnosis. There were advantages in this. Seeing people with many different diagnoses stopped us getting stuck with the stereotypes of any particular diagnosis and gave us a chance to observe those common movement disorders, such as perseveration, which crossed diagnostic borders. Learning something about each disability and its associated professional system took time, of course, and this was one disadvantage. Another disadvantage, it turned out, was the number of people you offended. Non-speech communication strategies were relatively new. When DEAL opened in 1986 most people in the state whose speech was inadequate had never offered any form of alternative communication. Even if we did no more than find ways for these people to indicate ‘yes’ and ‘no’, many of them were going to be doing more than they had before.
My experiences with Anne, Carolyn and Delia had already showed that professionals whose patients started doing more than they had been expected to do were generally underjoyed. As it turned out, the reactions of the retardation and rehabilitation fields were positively encouraging compared with the reactions of the autism establishment. Anne’s case had raised the ire of the retardation bureaucracy, Carolyn’s had got up the nose of the rehabilitation hospital, Delia was still battling the psychiatric hospital - but all this was merely dress rehearsal. Autism was sacred turf.
In mid-1987 I wrote asking for help to the academic psychologist whose material on autism I quoted earlier.
Surprisingly, we are getting what appear to be quite unprecedentedly good results in establishing high-level verbal [meaning in words, not in speech] communication with people diagnosed as autistic. We are leaning towards a relationship between such neurological malfunctions as apraxia and autism, a relationship that would seem to be akin to the relationship you reported in 1985. I would very much appreciate an opportunity to discuss your work in this area. We are also attempting to set up a research program directed specifically at the DEAL findings, and I would greatly value your views on the direction of such a program.
I received a prompt reply:
I view with some concern your venturing into the field of autism since autistic children suffer from such severe and global cognitive and communication problems which have been amply documented over the years in a veritable explosion of research.
Later the author told one of our speech pathologists that to visit and observe what we were doing was impossible because it would give us "spurious credibility".
Despite the professional fragmentation I mentioned earlier DEAL did nonetheless succeed in bringing together professionals from all disability fields. A group of them came together calling itself the ‘Inter-Disciplinary Working Party on Issues in Severe Communication Impairment’. Their aim was to close DEAL, and their basic argument was that what we said was impossible because
..the content and format of the communications achieved using assistance are inconsistent with informed expectations. Indeed, in some instances the communications defy rational explanation in terms of established psychological, medical, or educational theory.
My own personal view was that if the data conflicted with the theory it was the theory that had to give, but this plainly wasn’t a view that the Working Party shared. They wrote down all their criticisms of DEAL and sent the resultant paper to the Victorian government.
People with cerebral palsy, the Working Party said, couldn’t communicate at a sophisticated level - they couldn’t rehearse words before spelling them, they’d had no phoneme experience, and they had decreased sociability. People with acquired brain damage often remained in a persistent vegetative state, when they had no means of understanding and what looked like purposeful movement was in fact only primitive reflex activity. People with autism had severely and chronically impaired language comprehension and 80% of them were retarded.
Part of the role of professionals working in the area is to help families to come to terms with limited hopes for their child. ...
Sudden and rapid cures promised in a field where we know they are not possible can be very damaging and undo years of hard work and hard won adjustment.
Sudden and rapid cures like Anne’s, Carolyn’s, Delia’s, and Marco’s, presumably! Not one DEAL client has ever been cured. The most that we can ever do is give people a more powerful communication strategy than they had previously. Sometimes, as with Delia (who had not yet started to talk by the time of the Working Party report) we do a lot of work for very little apparent gain.
The Victorian government had got the Working Party’s report, and felt it had to do something about it. The buck was passed to the Intellectual Disability Review Panel (IDRP), the body which normally handled disputes over the provision or denial of government services. The Panel was asked to report on what the Working Party had called "assisted communication" and to determine the validity and reliability of such communication.
The Panel eventually tested six DEAL clients, one of whom was Marco. Two testing strategies were trialed, each with three clients. One was a laboratory-style arrangement in which all ordinary conversation or interaction was precluded. The clients were asked pre-recorded questions through headphones while their partners also wore headphones, through which they heard either questions or white noise. Only one client passed that test. The other test was more similar to everyday conversation. Panel members spent time with clients and gave them presents; later the clients had to use their communication aids to tell someone else what had happened and what they’d been given. All three clients passed this test.
Marco was tested in February 1989, a few weeks after he had started at the secondary school and some 18 months after starting to communicate through spelling. His performance reflected accurately his strengths and weaknesses, in behavior as well as in communication, at this stage of his development.
Marco had just coped with a move to a new school and didn’t find meeting two strangers any problem. He happily accompanied them to the shopping center across the road from DEAL, where they all had coffee, and Marco was given a black T-shirt and bought a chocolate Easter egg with their money. He also got 20 cents worth of Smarties from a coin-in-the-slot machine because, as the psychologists tactfully put it in their report, he "persisted in his request until he succeeded".
On their return to DEAL the psychologists said they’d given Marco something. "So what did they give you? " I asked. "Coffee" he said aloud - correct enough, but because he'd spoken it rather than typing it no validation of his typing. "Tell Rosie on the Communicator what else you got. " Marco then independently used the Communicator to type "20c SMARTIES" and "CHOCOLATE". After ‘chocolate’ he typed "FREDDO FROG", one of his stereotyped phrases, very quickly, instead of ‘Easter egg’. Because he was typing independently I couldn’t slow him down, which meant that automatic completions and stereotyped language were likely.
"Okay, but we gave you something else as well. Tell Rosie about it. "
At this point Marco reached for my hand and carried it around while he typed.
SCARF
"Did they give you a scarf, Marco? "
NO
"Then what did they give you? "
SOX
"Did they give you a pair of socks, Marco? "
NO
And so on through a list of different items of clothing until he finally got T-SHIRT. This performance is typical of people with word-finding problems, who get into the correct category then have difficulty in naming the exact item, but recognize that their incorrect attempts are wrong.
"What color was it? "
BLUE
"Was it blue?
NO
"What color was it? "
BLUE
"Was it blue, Marco?"
NO
"What color was it? "
RED
"Was it red? "
NO
"What color was it? "
MAUVE
"Was it mauve? "
NO
"What color was it?"
BLACK
"Was it black?"
YES
BLACK was the correct answer, but it had been the long way round. "Blue" was one of Marco’s obsession words, but even if it hadn’t been it might still have come out given that its initial letters are the same as ‘black’. Typing ‘blue’ a second time despite knowing it was incorrect indicated how hard it was for Marco to break out of his automatic completions. The psychologists reported that "he typed B and L and hesitated for some time before completing the word ‘blue’. "
Told that the test was over Marco relaxed and conversed with the psychologists, who asked him why he took my hand.
I GET NERVOUS ... CONFIDENCE ...
"Why are you nervous? "
WE ALL GET UPSET IF WORK IS HARD ...
"What was hard about today? "
GETTING MY THOUGHTS OUT.
As the session was winding up Marco took my hand again and typed his thanks to the psychologists for the T-shirt and, as they put it, "apologized for his insistent behavior in trying to obtain the Smarties". The psychologists had not grassed on Marco, and his detailed apology for the incident was evidence of his social and linguistic skills as well as a validation of his ability to type his own thoughts.
The Panel reported in March 1989:
The validity of communications using the ‘assisted communication technique’ was demonstrated in four of the six clients who participated in the two studies....
Most of the clients who participated in the studies had had their communication and intellectual functioning doubted by others over a long period. Three of the four clients whose communication was validated are currently attending regular schools, whereas they had been previously assessed as suitable for Special Schools or Special Developmental Schools....
In summary, ... it appears that the use of the 'assisted communication technique' has greatly contributed to their progress in regular schools.
and DEAL’s funding was safe until the next change of government.
Marco stayed at school till he was 18 and had completed 11th grade, after which he joined his father in the pizza shop. His school was so happy with his progress that they made a videotape "Alpha, Beta, Canon" to show new staff and other schools how integration could be a positive experience for students like Marco.
The last scene of the videotape shows Marco being interviewed at home. In the background Marco’s baby sister is calling over and over for her ‘bluey and her dummy’, his mother is facilitating and saying over and over "In a minute, dear!" and in the foreground his baby brother is trying to pull away the communicator. Real life is intruding, but Marco remains totally focussed on his typing. His last answer says it all.
"What does your communicator mean to you? "
IT’S THE MOST IMPORTANT THING IN MY LIFE.
More information on facilitation from
DEAL Communication Centre