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Engelska - Support needs of adolescents and adults with Asperger’s syndrome

Everyone needs to live in a context they can understand with properly adapted expectations and the ability to influence the situation. (Antonovsky) People with Asperger’s syndrome have difficulty in communicating and mixing with others, with full use of their intelligence and resources and have practical problems in everyday life. They may therefore need special support and assistance with developing strategies to cope with different situations in everyday life.

Communication

People with Asperger’s syndrome have difficulty understanding how other people think and feel and therefore sometimes do not take in other people’s expectations, views and reactions. They may need training in interpreting and understanding various types of message and reading facial expressions, gestures and body language. It is also important to learn how to listen and ask questions and request explanations and clarification in a positive way. To be correctly understood by others it is necessary to learn to convey your message in an intelligible way and be able to explain what one means. There is also a need to use body language, gestures, facial expression and eye contact to reinforce what one wants to say. It is also important to be able to express and deal with one’s thoughts, feelings and reactions in a socially appropriate way.

Social relations

Practice is often required to cope with mixing with others, for example in how to make and maintain contact and follow the rules of mixing socially. One also needs to know to receive and give advice or criticism, show appreciation and give praise, as well as how to cooperate. It is sometimes necessary to be able to compromise or “concede” and there is also a need to know how to show in a reasonable way when one wants to be left in peace. A fundamental requirement is to understand oneself why it is important to act in a certain way and see the benefit of “behaving well”.

Intelligence and resources

Many need educational support for difficulties in perceiving, understanding and remembering wholeness, context and meaning in what they read, see or hear. Abstract thinking and power of imagination can be practised, and special support may be needed on learning problems and any perceptual difficulties which may mean that is difficult to receive information through hearing. There may also be a need for measures to compensate for deficiencies in executive ability, that is to say being able to get things done, so that one can make better use of one’s intelligence and resources. Problems with concentration and attention can be reduced by adapting the environment, which needs to be undisturbed, well arranged, structured and functional. Work tasks need to be clear and defined. This may also mean that there is a need for training in planning, organising and prioritising. In addition there may be a need to learn how to find problem-solving strategies and be able to evaluate and manage time (be able to start, interrupt, complete, take breaks, wait etc.)

Housing

There may be a need for support on leaving home and choosing or changing accommodation. In the home it may be a case of support with “cleaning know-how”, advice on hygiene, clothing and washing or finances, shopping and diet. For some it may be necessary to provide continuous support in daily routines in the home, which may take the form of supported or group accommodation. Many additionally need social information and support in their contacts with authorities and other organisations in society as well as in relations with friends and family or in contact with landlords and neighbours.

Studying

In studying there may be a need for advice and support in choosing education and training, adapted studying techniques and curriculum. There may be a need for a guide or mentor for continuous study support, help in taking notes, visual or auditory aids and adaptations to create a good study environment.

Work

A person with Asperger’s syndrome may need support in looking for and coping with a job. Supervisors and work colleagues may need to be given information about the person’s particular needs, ability to work and limitations. It is important that there is individualised work-related and social support at the workplace, for example from a supervisor or contact person. It may be necessary to adapt work tasks and working hours, and work routines and instructions should be clear and agreed by both parties in order to utilise the individual’s skills and resources in a respectful way. Work in a smaller group of employees, integrated into companies or similar, with a knowledge and special designated supervisor can sometimes be suitable.

Leisure

In leisure time the social difficulties can often lead to loneliness and exclusion, particularly if the person lives alone and is not in the world of working or studying. Extreme fixation on one or a smaller number of limited interests and increasing passivity and lack of enterprise for other things are not uncommon. Stimulation and support in developing varied interests and activities may be needed. Continued contact with relatives, existing “old” friends and acquaintances, contact persons and group and rendezvous activity is very important to prevent social isolation and mental ill-health.

Mental problems

Compulsive and ritual behaviour, depression, anxiety, social phobia, sleep problems, eating disorders and other additional mental problems are common. Access to adequate psychiatric assistance, based on knowledge of the specific features of people with Asperger’s syndrome, should be a matter of course. It is important to stress that all the difficulties and problems described above do not occur in all persons with Asperger’s syndrome. The life situation changes with time, and there are different degrees of difficulty and great differences in experienced and actual problems between different individuals with the same diagnosis. However, many people with Asperger’s syndrome, at least for certain periods of their life, need special and adapted support to satisfy the needs that other people usually manage to meet for themselves.

Written by Leif Törling, Adult Habilitation Center Uppsala

Factual material reviewed by: Anne-Liis von Knorring, Professor of Child and Adolescent Psychiatry at Uppsala University Hospital