Bursting the bubble
Care tailored to the needs of the individual. That is the maxim of specialist behavioural-type care centres for autism. It is an approach to the disability that is achieving some convincing results. We report from three Belgian centres.
Talking, understanding what is said to you, adapting your behaviour to a given social situation. What could be more commonplace? They are part of the social interaction in which we all engage almost unconsciously. Yet for most autistic people, they constitute insurmountable obstacles. Locked in their own minds, isolated in their own private worlds, living in a “bubble”…. are all descriptions used frequently to describe the handicap. Descriptions that conceal its highly diverse nature. The truth is that there are as many types of autism as there are autistic individuals. Each remains just as much an individual as any one of us, with his or her strengths and weaknesses, and consequently requiring individual treatment.
Mistral, a post-psychiatry oasis
Saint-Georges-sur-Meuse, a small village located in the Walloon region of Belgium. It is here that 14 years ago the non-profit organisation Aide aux Autistes Adultes – Mistral opened its doors in response to the lack of facilities dedicated to adults with autism in Belgium. “Three-quarters of our residents come from psychiatric hospitals. That is pretty much typical for autistic persons of this generation. Most of them passed from centre to centre before ending up in a psychiatric institute where they were given neuroleptics to control their behaviour,” explains Cédric Kalkmann, Mistral director. “When a new resident arrives, our first aim is therefore to reduce their suppressant intake while at the same time adopting other strategies designed to limit their deviant behaviour and to teach them essential practices, such as sitting down at a table or going to the toilet.” Unable to express themselves and faced with the incomprehension of those around them, many autistic people react with violence as the only means of drawing attention to themselves, say the cognitivists. There was therefore a need to establish an appropriate communication framework, a meeting point between our social world and the internal universe of persons with autism. “We try to place ourselves at the level of their handicap so that they are better able to understand their environment and so that we can establish dialogue with them. The deviant behaviour then diminishes and the doses of neuroleptics can be cut drastically,” explains Cédric Kalkmann. “During the centre’s early years the violent outbursts were of course more frequent. But, progressively, we have managed to reduce them by 90%.” How? By ignoring violent behaviour on one hand and rewarding appropriate behaviour on the other. The architecture contributes greatly to the well-being of the centre’s residents. “Each room is associated with a colour that corresponds to a precise activity. The corridors and stairs are painted yellow, for example, which is the colour of transition.” This is one of the techniques recommended by the TEACCH method, one of the many behaviouralist approaches used to support autistic persons. The aim is to structure time and space in a way that limits as much as possible the excessive anguish associated with change among people with autism. ”We combine this approach with what is known as the Snoezelen method (editor: see box) which makes it possible to work at the human and relational level.” “We work in four groups, four living groups of seven or eight individuals accompanied by two tutors. This is the main room for everyday use. The residents eat here, learn skills here or move between the two activities.” It is furnished with hard and easy chairs and cupboards full of toys and DIY materials. On the wall there are communication boards where people can consult their timetable. “Each activity is represented by a picture or a pictogram. Some residents display them themselves and others, who are able to write, keep their own diary.” The days are divided up into everyday activities such as peeling potatoes, doing the washing or taking out the rubbish bins; play activities, such as sport, DIY or drawing; and individual learning activities. In short, it is community life that adapts to the particularities of each individual.
The working philosophy is the same at Les Aubépines, a former convent converted into a residential centre for autistic adults. “Every 18 months we assess the progress made by each resident and set the goals for the next 18 months. They go riding and swimming and do gardening. We also have a beauty care room and a hairdresser. In all cases the individual programmes are drawn up on the basis of the desires of the individual,” explains Marie Dominique de Hemptinne, director of Les Aubépines. Philippe, a strapping fellow aged around 40, has lived here for nearly 15 years. Very independent, he often walks around the centre’s corridors unrestricted. “You are doing a report on autism? Very good,” he declares before asking the director yet again about the timetable of each teacher or how many children they have and their names. We visit a living area. When we arrive, Sandra and Fatima are waiting nervously to greet us. They smile but do not say anything, seeking physical contact more than anything else, whether an embrace or a quick peck on the cheek. Julie is more reserved. She avoids eye contact, looks slightly anxious but shakes our hands without saying a word. The residents have access to their bedroom at all times. Sandra proudly shows us her room. A puppet on the wall, a bed, a chest of drawers and a wardrobe. It is a sober but welcoming room. Blue doors for the bathroom, yellow doors for the bedrooms. Here too, the rooms are structured by colour. Most autistic persons are unable to communicate through speech as they find it difficult to grasp the imaginary. Their visual capacities are generally better developed, but restricted to static elements. They often have difficulty interpreting movements, such as facial expressions.
Le Chat Botté, looking to the future
Just next to Les Aubépines stands a small building that is looking resolutely to the future. For almost five years now, Le Chat Botté has been welcoming autistic children aged up to the age of seven. This is a day centre providing specific training designed to enable young children to achieve maximum autonomy. “We are working against the clock as the brain develops during the early years of a child’s life,” explains Hélène le Hardÿ de Beaulieu, the centre’s managing director. “Many studies show that the earlier an autistic child is helped, the better he will be able to adapt to his environment in the future,” adds Sarah Terelle, a psychologist and one of the centre’s directors. The aim is to give the child every chance to go to school, whether a mainstream or special needs school, and avoid the need for institutionalisation at a residential centre. As at Les Aubépines and Le Mistral, the support is multidisciplinary with staff including physiotherapists, speech therapists, teachers and social workers. The difference is that the approach is much more intensive, as the aim is not integration into a community of persons with similar disorders but into society as a whole. “We try, as much as possible, to give priority to individual stimulation sessions,” explains Sarah Terelle. “The learning process is broken down into a number of stages of progressively increasing complexity.” “We try to involve as many children as possible in this approach. Someone is charged specifically with visiting families in the home to explain the everyday elements of behaviour that are favourable to a child’s development. Another member of our team is charged with monitoring the progress of children at school after they leave the centre,” says Sarah Terelle. “We give priority to the ABA-type approach (editor: see box) but, as is the case for all autistic persons, we adapt the method according to the child and include principles taken from other methods. The methods are all mutually complementary.”
Bernard Nols, special needs teacher at Mistral, takes the same view. “Regardless of the different methods and techniques adapted to autism, the key factor for me is that the residents should be happy, progress and achieve their goals. Theory makes no sense if it does not permit progress in practice.” Caring for autistic persons clearly involves drawing on several techniques. A lot of improvisation also, as is illustrated by the many solutions or strategems dreamt up by teachers specifically to help one or other of their residents. This great diversity is easily understood when you consider the heterogeneous nature of autism itself, the sufferers ranging from those with serious mental deficiency to “high level” autistic people with extraordinary gifts. The intervention strategies are necessarily extremely eclectic. Across Europe, the parents of autistic persons and specialised staff are battling to improve the day-to-day lives of these individuals who struggle to communicate – an activity so fundamental to human nature. At the same time, the nature of the support varies greatly between Member States. In Scandinavia, a special needs teacher is assigned permanently to families to provide continuous support. In France, on the other hand, the emphasis has long been on the psychiatric and psychological approaches, all too often leaving parents in the dark at the expense of their handicapped child (see box). Lying somewhere between the two approaches, Belgium has competent centres but continues to suffer from a lack of funding and a certain incoherence between the different institutions. Despite their differences, autistic persons can find their place in this world. What remains to be seen is to what extent society is prepared to call itself into question to achieve this.
Julie Van Rossom