Seven-year-old Emma was brought to DEAL by her mother Tracey on the basis of a meeting with a friend at a church function. Tracey wrote later:
I tried hard for a fortnight or so to ignore her advice about attending yet another place that offered astounding improvement for our special child. Of late I'd preferred not to risk going through any 'false hope' withdrawals.
Emma was a beautiful child, tall for her age, with magnolia skin and lustrous wavy dark hair. She had been autistic since the age of one, and was now at seven described as functioning at a two-year-old level. Her IQ had been assessed as below 50. Her father had left her mother not long after Emma's disability was diagnosed.
Emma's speech was restricted to simple phrases, many of which were repetitive or echolalic and not used effectively for communication. Efforts had been made to teach her sign language, but she was still only able to use six signs Her comprehension was thought to be poor, perhaps at the level of understanding simple instructions, and she had considerable difficulty with all self-help skills, such as dressing and bathing. She had disturbed sleep patterns, but wasn't hyperactive - left to her own devices, in fact, she just sat.
At her first visit in September, 1986, Emma played appropriately with some battery-operated toys while I talked with her mother. When her turn came and I asked her to try some communication equipment she dissolved into tears, clasped her hands in her lap, and refused. I took her hand, despite her resistance, and made her push some of the buttons
When given wrist support to compensate for her low muscle tone and to encourage her to move she was able to point with her right hand to named objects on the Talking Teacher computer, although she had some difficulty in extending her forefinger and pressing the display and had obvious eye/hand co-ordination problems. When asked to point to one out of two Ladybird word cards she was again unwilling to co-operate. On the Vocaid she spelled out on request her name ANNA, MUM, LUKE, SCHOOL, DOG, and in numbers her age and her brother Luke's age. On the Communicator she spelled her name, then I WOS TIPING. When asked if she had a message for Tracey, her mother, she spelled SHARON SIT UP. This was an echo of her mother’s exhortations to her - an automatic repetition? an unlikely attempt at humor? Emma tended to point without looking, and it was necessary to inhibit her pointing until she was looking at the display. She burst into tears again at intervals during the session.
It was a good start, and following it Emma had some success at home, although her work with her mother was very slow. She disliked the pressure at DEAL - when she mucked up I called her a toad - and it was a long time before she stopped crying at least once a session. She could, however, be motivated by rivalry with DEAL's other young clients.
At the last session that first year she had loosened sufficiently to spell out on the Talking Computer I CAN READ, I CAN FEEL, and I FEEL PRETTY. On the Communicator she discussed her mother's divorce. STEPFATHER HATES ME. I MISS DAD, IM SORRY I MADE HIM GO.
No, her mother said, don't blame yourself, there were a lot of things.
I HERD HIM SAY IT WOS ME.
Emma used a borrowed Communicator to spell fluently with her mother over the Christmas holiday. She continued coming to DEAL for the next year. Her behavior improved, and she was able to communicate in less structured situations and with a wider range of people. An Education Department psychologist who attended one session recommended Emma for a normal primary school placement. Inappropriate and echolalic speech continued, but appropriate utterances increased. CAN I EAT ANOTHER BISCUIT I BADLY NEED TO DO A BIT OF WORK ON MY CANON [Communicator]. Her nickname for me was 'special toad'.
Wrist support was gradually faded to forearm or elbow and sometimes shoulder, and Emma gradually extended the range of her utterances. MUM LOVES ME SO MUCH AND IS SO SADDENED BY MY AUTISM SORRY TO BE DIFFERENT Despite our constant reminders she continued to try to type without looking at the display. In September, 1987, a speech pathologist’s report said "poor eye-hand co-ordination <and> low self-esteem and confidence... mean that Emma needs someone to sit with her while she works, giving physical and emotional support and focusing her attention on the task in hand. ...It is likely that Emma will remain 'choosey' about communication partners as each interaction involves what she sees as intrusion into her personal space."
By 1988, when Emma was in primary school full-time, her echolalia and jargon had diminished substantially. She was able to be quiet on cue. Her presentation was more mature and she kept her eyes on her task more. She worked well with her school integration aide, spelling TEACHER NICE. I AM GETTING READY TO LEARN but I HAVE NO CONCENTRATION and I LIKE DOING WORDS.
At about that time Emma's family moved to the country, and when she came in at the start of 1990 I hadn't seen her for about eighteen months. Emma was in grade five, was about to celebrate her eleventh birthday, and looked lovely. She was far happier and more confident than she used to be. Tracey brought Emma's previous year’s report - all subjects fine, apart from the ones such as physical education and handwriting that required a lot of motor planning. Her class teacher wrote that "Emma possesses an exceptional command of written language and produces sophisticated pieces of work. " and "has exceptional skills of mental calculation. "" - she could do in her head sums that the other kids used a calculator for, to the extent that they took their math answers to her for checking. The music teacher found her "a delight to have in music classes. Her enjoyment of music is infectious. " Her home class teacher summed up; "The opportunity to work with Emma has given both students and teachers a greater insight into the contribution that disabled students have to offer. The experience has been a very enriching one." More important still from my point of view, Emma was using her Communicator not just with her family and her integration aide but with the other kids in the playground, and she had friends - kids who came and stayed with her for the weekend. For an autistic child to be popular is really quite something.
On the other hand Emma still wasn't typing unassisted, and it was still hard to get her to look at the Communicator when she was typing. I had got rather tougher since last seeing Emma and I wasn't going to take this. Emma does have a real muscle tone problem, being as floppy as a rubber band, and she does have real eye-hand co-ordination deficits (her sensory-motor program didn't seem to be helping much) but it was also true that one of the straightforward practical reasons for her eye-hand co-ordination problems was that she didn't try to look. She relied on the person who was facilitating her to make sure that the Communicator was in the right position in regard to her hand, and if she was clearly getting it wrong she expected the facilitator to nudge her. If Emma was supposed to be spelling CAT, for example, and she spelled CA, looked away, and had her finger stray towards the S, the facilitator's usual tendency would be to adjust the Communicator so she hit the T she was obviously aiming at. I knew how just easy this was, and in order to guard against it I deliberately did the reverse; every time Emma gazed off into the corner of the room I moved the Communicator and repositioned it so that she'd make a mistake and have to look at it again. Her error rate went right up, and I insisted that she erase all her mistakes and redo them. This took a certain amount of pressure, and Emma dissolved into tears - she doesn't often do this now, her mother says, but visiting DEAL must have taken her back a bit to the old days. As she said, I SEEM TO CRY HERE BECAUSE THIS PLACE UPSETS ME... ITS A SAD PLACE
Sad or not, it was good for her. I moved the Communicator around, shouting 'Chase it! Chase it!', stopping it in awkward places so she'd have to look at it. By the end she was getting it right again. It was certainly quicker and more efficient if we didn't let Emma hit the wrong letters, but that meant that she didn't have to take responsibility for her mistakes and she didn't have to improve her co-ordination. It's a real problem getting children with disability to accept responsibility, and we often don't try - more than that, we don't let them take it. Integration aides often think that if their student makes mistakes it reflects on them. If the student's not keeping up they feel guilty , and they help them - if the student gets an answer wrong the aide points this out and lets them correct it before handing it in. Naturally, the students take full advantage of this. I'm a great believer in no-fail learning in the early stages of skills acquisition, but once a student has the necessary skills and confidence they could do with the bracing influence of a few failures; as it is, they get into the habit of letting other people pick up the pieces.
I tried standing Emma up and holding the Communicator low (if you have a problem with low muscle tone it helps not to have to lift your arm against gravity) and by the end of the session I had Emma spelling out words with no bodily contact at all. Like many of DEAL's clients, she'd liked the human contact involved in arm support, and it was a wrench to be weaned so abruptly. This involved more tears.
The next day at school Emma spontaneously typed without any support. She has continued to be able to do so, provided that the Communicator is positioned low so that she doesn't have to lift her hand against gravity.
We've done quite well with Emma's communication, but (whatever this book may seem to imply) communication isn't everything. There is also the issue of self-help skills. As Emma's mother said, "Periods start, you know childhood is over, and you ask yourself 'If she hasn't learned to dress herself yet, is she ever going to?'" Emma's school is saying "How can Emma be so bright and still not wipe her bottom after going to the toilet?" but she can't, or she won't. All the actions that are for us done on automatic pilot aren't automatic for her. Some of her difficulty is a motor planning problem, and that may account for her inability to do things like orient clothing correctly. Some of it is motor memory. If we actually had to think consciously of each step in turn when we went to the bathroom we might have problems ourselves, but we don't - our bodies remember for us Our water heater broke down once, and no water came out of the hot tap, on the right; for the entire week until it was fixed I would, every time I went to wash my hands, automatically take the soap in my left hand turn on the right-hand tap, and get no water. I would sometimes even remember before I went into the bathroom, but if anything else at all came into my mind before I got to the basin I’d still use my automatic and wrong movement pattern. If it's that hard for me not to do something I know is dysfunctional it must be many times harder for these children. Closing the bathroom door, flushing the toilet - these things are for us on automatic pilot. For many children with autism they are not automatic, and making them automatic requires years of intensive and consistent nagging by parents and teachers. Equally, once a pattern has become automatic, it is extremely difficult to alter it.
Emma picked her nose through the session, and I don't think she did it deliberately, she just hadn't internalized that particular social prohibition. Social prohibitions appears to be as hard as internalizing motor patterns, which at first didn't seem to make sense. Emma was very bright, she was doing well at schoolwork, and in every other way she was as handicapped as if she had severe cerebral palsy. She can walk, she can feed herself, and she can take herself to the toilet, but she can't dress herself, much less cook, clean or iron for herself. I suggested that her parents start yet another co-active dressing program, standing behind her and moving her arms through the routine over and over until she internalized the movements. "Start with just one garment and see how that goes, to avoid motor memory overload. " I said. It was the best advice I could give, but I didn't really have much hope. It looks as though Emma might be functionally disabled for the rest of her life.
People like Emma are going to require a whole new set of resources. In many ways it was easier for everyone else when she was thought to be intellectually impaired. You could institutionalize her in a place where people would do for her what she couldn't do for herself, and that would be that. When you're looking at providing for someone you know has academic and social needs - who can make a contribution to society, but who's going to need a lot of support to do it - there's a whole new set of problems. Perhaps Emma could jobshare with someone who's got the physical skills but not the intellectual skills (although, to be sure, the further we extend our horizons the harder it is to find someone who fits that description). Society needs to consider some innovations, because otherwise Emma's future is very bleak no matter how high she scores on her IQ test.
More information on facilitation from
DEAL Communication Centre