Is´t too late ?
OPLEIDINGSCENTRUM
A U T I S M E
Opleidingscentrum Autisme VZW Laar 61 B-2140 Antwerpen Belgium
tel. 03 / 235 37 55 - fax 03 / 236 58 46
Herman is a 40-year-old with mild mental retardation who suffers from autism. Although autism is a developmental disorder, for almost the whole of his life he has been treated as a 'mental patient'. He has endured severas episodes in psychiatric institutions, but now he is again in a small villa-system unit, together with mentally handicapped adults without autism.
In his unit he is the only autistic resident and he has a bad reputation on account of his behavioural problems, such as they are: his extreme passiveness during certain periods or extreme dependence on any of the teachers who happen to be in his vicinity. On other occasions he does nothing but scream, lash out, scratch and pull the wallpaper off the wall. If those behavioural problems last too long, he is "allowed" back into the psychiatric unit for a while.
Although the communication of people with autism is 'different', the way in which the nonverbal Herman is approached is largely verbal. People often think that he has fully understood the instructions but is simply being stubborn or doesn't feel like doing´t.
He once had a toy guitar on which he strummed for hours on end until it drove everyone mad. So they took it away from him, 'otherwise he wouldn't do anything else'.
Although social interactions for people with autism are extremely difficult, the emphasis in the unit is still on group experience and group activities. Herman usually prefers to be alone, but in the unit they hold the view that he must learn just like the others, cosily in a group, 'otherwise he will become even more autistic than he already is'.
Herman very often finds himself in situations which are too difficult for him. A considerable amount of socialization is presumed and he is unable to fulfil these expectations. Owing to his difficulties with conununication, he is unable to say 'This is too difficult for me!'.
His way of saying how difficult it all is is screaming, biting and tearing the wallpaper off the wall. It all says : 'I can't stand it any longer, it is too difficult'.
There are many Hermans like that. And professionals who are not trained in autism are only human after all. They persevere for severas (for both parties difficult) years and then suddenly they give up : they can no longer stay the course.
When we see how Herman spends a typical day in the unit, we start to understand some of the difficulties involved.
The afternoon is the best period for him; then he has three hours in the workshop with an unbelievable luxury : an individual supervisor! Then Herman works, but because he has not learned to use any visual diagrams (even though he has capabilities for this because he recognizes photos without any problem) he is dependent for just about everything on the supervisor. So he looks to him, and the supervisor follows him, every afternoon, time and time again, a hundred times a day. Maybe Herman really thinks that that looking is expected of him, that it is an essential part of the work. But with so little independence he is in any event fairly helpless, even in that 'best period' of the day.
Fortunately for Herman, the unit has its own set of fixed routines, so he is able to predict the sequence of events - and that gives him something to hold on to. But there are the weekends and holidays and, of course, also the unforeseen changes which catch him unawares. Then he resorts to hand-biting. The professionals often make yet another attempt to involve Herman in the domestic activities doing the washing, the dishes, clearing or laying the table.
But it isn't easy. A concept like 'laying the table', no matter how simple it is for us, is something that Herman doesn't fully comprehend. He looks at the others and tries to do the same. But often he gets it wrong : too many plates, not enough glasses, forks on the right instead of the left ... Really he should be able to see' what is expected of him, but the instructions are in words. 'Lay the table' : now he knows how to begin all right, but the rest of the words which he hears he cannot retain in his memory. He takes his courage in both hands and makes a confident start, but five seconds later the meaninglessness of that concept is staring right back at him again. That yawning chasm of aimlessness, lack of direction. He grinds to a halt, totally blocked. 'Look at him standing there again, the lazy- bones'.
But the 'free' time is the most difficult of all for Herman, and unfortunately there are more than eight hours of free time each day. Sometimes he is then urged on to sit at the same table with the others and play cards. Then he rocks back and forth. The nearness of all those other people, who are giggling and doing things which are mostly incomprehensible to him, is something he finds unbearable. Fortunately the group leaders soon appreciated that : Herman is no longer expected to join in the card games, and the other residents of the unit also prefer that Herman no longer joins them. Fortunately...
Nevertheless, this hasn't yet solved all the leisure problems. For Herman wants to do all sorts of things during his free time, but he doesn't know what, of how, or where, or for how long. And he is being consumed by those contradictory feelings of wanting to and not be able to. Then he sometimes screams, or tags along after the professionals, who also do not quite know how to interpret his extreme dependence ('Go back and sit down like everyone else'). Frequently it then gets so bad that he simply has to expiode : screaming, biting, tearing the wallpaper off the -wall...' (Peeters 1994).
Herman is bored to tears, needs attention, but doesn't know how to demand it. He wants to be occupied, but he doesn't know how. He has 'behavioural problems'. Each time he starts to bang his head against the wall, someone on the staff comes running over to him. Something is happening! If he hits a fellow-resident on the head, the result is the same : there is the staff member again. After a few experiences he sees how he has to demand attention. It's easy : you bang your head against the wall or you hit someone on the head. Herman has behavioural problems. In the unit the conclusion is now reached that he displays 'self-destructive behaviour'. That he is 'aggressive'. That he needs help.
'Herman has behavioural problems'.
In numerous institutions they know them, the Hermans. With great dedication an energy, but without specialization in autism and understaffed, the story frequently does not have a happy ending. For years attempts have been made to preserve them from worse, until the time comes when it is no longer feasible for no one, not for them, not for the Hermans. Then, all of a sudden, it doesn't matter any more, not to anyone. Medication then has to compensase for the lack of an approach specialized in autism...'.
A behavioural problem is merely the tip of the iceberg. The tip of the iceberg is caused by the huge invisible mass under the water.
Professionals must develop more specially adapted work activities for him, an appropriate work behaviour, a repertoire of leisure skills ... In other words, Herman needs an educational programme specialized in autism.
Really, what has happened all the time is that an attempt has been made to fit Herman, though with the best of intentions, into the patient care system, instead of the other way round.
The objective of education specialized'in autism is a two - way adaptation. First : in developing communication, self - help skills, free - time skills, we try to make what we find ' quality of life ' more accessible to persons with autism. In this way they are' adapted ' to what we find meaningful. Second : autism is such a pervasive developmental disorder that the most important forms of adaptation have to come from us. We adapt the environment, our teaching and education style so that their lives are less chaotic.
In Flanders where we have now ten years of good educational experiences in our classrooms for children and adolescents with autism we see that people with autism seem more self - confident and happy.
Unfortunately much less has been done for adults, as if everything were too late already. And yet, for them it is never too late that professionals study autism for the first time and learn how to adapt the environment to the specific needs of adults with autism.
It is never too late to have the first assessement and to develop the first non verbal communication systems, free - time skills, and other functional skills. It is never too late for them if we learn to adapt our social and communicative style, if we learn to see the world through their eyes
The basis of specialized education is the creation of predictability in space and time. - Everyone needs predictability in his life. It is important that we have information in connection with our 'where' and 'when' questions. In our daily life we have our routines and know where we sleep, eat, work, relax, But in a strange environment, where people for example speak another language, those are the first questions we think about. Where do I sleep? Where do I eat? When do we have a break? When do I start to work? When is the working day over?.... We want that information in a language we can understandi In brief, predictability means: having an idea, or a mental image, of 'when' and 'where' and 'how long'.
People with autism have a lot difficulties with transient, temporal information, but they are good at processing visuospatial information. People with autism are 'visual thinkers', even people with autism with high IQs need an answer to those questions in a visual, less abstract way. (T. Grandin 1992; joliffe, Landsdown and Robinson 1992).
'All my thinking is visual, 'says T. Grandin, 'I do not think quickly because it takes me some time to form a visual image of what I hear. I cannot remember what people tell me, except when I can convert their verbal information into visual images. Most people in the so-called normal world think in words; but thinking in language and words is foreign to me. I think totally in pictures.'Communcation, selfhelp, domestic skius, workskills and workbehaviour, leisure skifis and social skills are the key-skffls wich are worked on in a educacional program wich aspires to the greatest possible level of happiness permitted by the limitation of a pervasive developmental disorder. To learn these skills they will also need, above all, visual support.
(The story of Herman is an extract from the new book Theo Peeters wrote together with C. Gillberg; 'AUTISM: medical and educacional aspects',1995)
Mr. Valkenborg Jos coraborator of the
Opleidingscentrum Autisme.
Laar 61
Belgium - 2140 Antwerpen
Tel. 03 / 235 37 55
Fax. 03 / 236 58 46