The Task: Social Rehabilitation

Difficulties of Autistic People as Adults

The developmental phase from puberty through adolescence and on into early adulthood is a difficult one for everybody. Already in the case of non-handicapped young people this phase can be characterized as one of emotional instability. Young people gradually outgrow their roles as children and leave their families; these, on the one hand, have been protecting them all along by caring for them, nursing them, and providing them with emotional support, but at the same time have been determining and controlling their lives and limiting their independence.

Now, new demands from outside (education, choice of profession, peer pressure, the opposite sex) have to be harmonized with the previous demands of the family, and the relationship between parents and children needs to be redefined.

This change requires flexibility and a readiness to let go, as well as recognition of their new roles on the part of both partners, and it takes its course differently in families that have autistic children.

Depending on the level of their particular ability to function, autistic young adults also develop a variety of needs which are similar to those of non-handicapped people their same age. On the other hand, because the radical developmental disturbance of autistic people at this age has an especially strong effect on the development of their social behavior, communication, and feelings, they are not able to express their needs and wishes in an appropriate manner and to take on a new role.

In general, they have no friends outside the family and are unable to undertake a "normal" path of education on their own or begin a "normal " professional training of some kind. As a result, they remain closely bound up with their family. The parents maintain their previous role, continuing to provide protection and care, solving the problems for their children, and impeding the development of their autistic children's independence through this very attitude and behavior.

While their non-handicapped contemporaries are gradually developing their own identities, autistic people frequently continue to be "steered" by their parents. Often their sense of self is only faintly evident, remaining fragile and easily disturbed. Violent emotional outbursts and destructive actions directed towards themselves, other people, or objects that occur with many autistic people from time to time without any apparent cause can be interpreted as reactions to fears, panic, or undigested feelings. Autistic adults have difficulty externalizing their feelings; they are "trapped" in their emotions, which they do not even understand themselves. In general, many of them do not know any appropriate forms for expressing protest or refusal, nor can they communicate their wishes and needs in a way that people around them can understand or answer questions about their wishes.

It is even more difficult for people they are trying to communicate with to understand when autistic people are dominated by compulsive thoughts (say, of earlier conflicts or aversive situations or people) and react with a high degree of excitement. Sometimes they express frustrations, fears, or past insults so long after the fact that the causes of these can hardly be discovered. Even autistic adults with some linguistic capacity are unable to get their difficulties across to others in a normal way. Such people can become even more isolated than they were in their childhood and teenage years with their new wishes and needs, the way they handle their sexuality, and their increased bodily strength. Every new situation -- outside the family -- is hard for them to understand. They have to orient themselves differently with respect to time and space and adjust to the new experience of meeting other people. The repertoire of communicative possibilities that they have previously developed is no longer sufficient. Unless they receive some therapeutic help, they will have hardly any possibility of developing new forms of communication; instead, they will fall into compulsive rituals of behavior and structure their day according to their own rigid organizational principles. As they did earlier with their parents, they can easily "build" persons in charge of them, co-workers, therapists, or house mates "into" their compulsive behavioral patterns in such a way that an extremely impersonal (reified) relationship to them sometimes develops.

Difficulties also arise from the fact that autistic people have hardly any feeling for the kind of behavior that is socially appropriate in everyday situations. How to deal with other people in everyday situations; what kind of communicative or hygienic measures are normally necessary and imperative; how to use tools and utensils; how to act in the swimming pool, on the bus, or at the supermarket -- these are the sorts of social norms that autistic people have no understanding for because they are almost completely lacking in the necessary social empathy. Even when they have some sense for such norms, they go against them more frequently because they have no understanding for sanctions or negative feedback from the environment. They don't know what they have done "wrong." Most autistic people see no need to work productively or occupy themselves in a "meaningful" way -- as we say. They often have no concept of money, no need to communicate with their colleagues at work, and no sense for work as an important part of their life. There are many autistic people who, without therapeutic assistance, can neither establish a relationship to work that would be of service to their rehabilitation nor be helped forward through work. Left to their own devices, most autistic adults are quite limited in their ability to occupy themselves in any meaningful way even in their leisure time. Their behavior is predominantly stereotypical, and they often become so over-stimulated that it takes a great deal of effort to get them back "on track."

Prerequisites for Social Rehabilitation

For the majority of autistic people, social rehabilitation is therefore a long-range goal, one they can approach only through long-term learning processes under conditions favorable to their support and encouragement. As a rule, the sphere of social protection offered by the family situation cannot provide such conditions.

In any given institution, the mid-range goals should be defined and the strategies by which they can be achieved worked out in common by everyone who has any part in the rehabilitation process (including the parents!) and translated consistently into the structuring of the life and work situation.

Autistic people experience far too little improvement by merely living together with other people or working together with others in the same space. They continue to be exposed to their own compulsive, stereotypical impulses and fail to develop any social competence. Example

An autistic young woman spends the whole week looking forward to her trip to the swimming pool. During a normal swim time, she pushes a little girl into the water (one of her typical compulsive acts). As a result, she has to leave the (public) swimming pool. The usual consequence in such cases is that she is no longer allowed to swim in a public pool at all or else only during special hours set aside for use by the handicapped. But what really needs to happen is that this autistic woman learns to be considerate of other people in the swimming pool and to stop her compulsive pushing.

Autistic people think, speak, and act differently. This is why, even as adults, they are dependent on special attention to their developmental education. However, therapists who implement such education must have special knowledge at their disposal. They should understand autistic people, be able to enter into their "other world," be familiar with the ways in which autistic people process their perceptions, and be able to carry out observations and analyses of an autistic person's behavior and take appropriate measures for improving it. Autistic people can only experience successful improvement when their everyday, living, work, and leisure time situations are structured in a way that is specific to the nature and needs of autism.

Therapists of autistic adults also need to be aware of therapeutic procedures they can use to reduce heightened excitement and behavioral excesses that occur from time to time in autistic adults so that these people do not endanger themselves and others.

Institutions with the task of rehabilitating autistic people must therefore employ coworkers who through their training, but also out of their sensitivity, are in a position to achieve these complex results. In the course of this work there must be sufficient time to encourage the development of each individual autistic person in accordance with his or her possibilities -- i.e., to deal with the difficulties specific to that person's condition of autism in a competent fashion.

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