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Asperger's Syndrome

Asperger's Syndrome (AS) is a fairly rare disorder, occurring in about 3 out of every 10,000 people, usually becoming apparent in infancy or early childhood. The exact cause is unknown, but both genetic and environmental factors are thought to be involved; evidence for a genetic link is that it tends to run in families. Along with autism, AS belongs to a group of disorders called 'pervasive developmental disorders'. Whilst sharing some of the traits of autism, AS differs in that speech tends to develop at a normal age (rather than being delayed as in autism). People with AS are often of average, or above average, intelligence.

The symptoms and characteristics of AS can present themselves in a variety of combinations, and in varying degrees of severity, so two people with the same diagnosis can act very differently from one another. Because people are affected in different ways, an intervention that works well with one individual, may not be effective for another. However, generally it can be said that AS affects how a person makes sense of the world, and in particular how they relate to other people. Characteristic difficulties include: problems understanding gestures, body language and facial expressions, in other words reading other people; problems in understanding what is socially appropriate in a given context, and obsessions with rigid routines and repetitive ways of doing things. Young people with AS may develop a sophisticated vocabulary, but tend to use language in a very literal manner, so that they have difficulty understanding humour, for example, where nuance is important. Other clinical features include apparent lack of empathy, intense absorption in certain subjects, and clumsy, poorly co-ordinated movements. If communication is found difficult, an individual may find it hard to make friends, and so withdraw and become isolated; the lack of understanding in their everyday lives can lead to frustration, depression and low self esteem.

AS is a lifelong condition for which there is no 'cure', but symptoms tend to improve over time. Social skills can be improved, and a good quality of life can be achieved if the individual learns to understand their own strengths and weaknesses. Insight into the condition is an important step in learning how to cope with the way the rest of the world works. Some researchers have argued that AS be viewed not as a disability, but as a different cognitive style. And there is a growing movement to think more in terms of celebrating difference, than in curing a 'disorder'. People with AS often excel at tasks where attention to detail and precision are called for. With the right support and encouragement, people with AS can lead independent and fulfilling lives.

Symptoms and Characteristics

There are many different symptoms of AS and these may present in markedly different ways between one person and the next; however, the following is a guide to some of the more commonly occurring symptoms.

Difficulties in Social Communication

  • difficulty reading other people in terms of, say, facial expressions and body language
  • speech may be repetitive and inappropriate to the social context; the AS sufferer may appear insensitive to the feelings of the listener
  • anxiety in social situations may lead the sufferer to avoid eye contact and to withdraw, particularly if the conversation is emotionally toned

Difficulties in Social Relationships

  • people with AS often find it difficult to engage in small talk and make friends with people. They may find it hard to express their thoughts and feelings
  • a tendency not to understand nuance, and to take what people say very literally, makes it hard for them to understand humour, for example
  • interaction with groups of people may be particularly difficult, and the AS sufferer can find it hard to choose relevant topics of conversation

Problems in Flexibility of Thinking

  • difficulties in predicting what will happen next in a given context
  • problems with organising one's day to day life, and in planning ahead
  • an obsession with rigid routines and repetitive ways of doing things which, if interrupted, causes distress. Change is found particularly hard

Other common features include depression (particularly among adults), social isolation, clumsiness, and having only one, or a very limited number of interests.

Diagnosis and Assessment

Parents of AS children often notice differences in their development as early as 30 months; however, diagnosis is most commonly arrived at between the ages of 4 and 11 years. In some cases, a diagnosis may not be arrived at until adulthood. A G.P. who suspects that further investigation is warranted may refer your child (or yourself) to a specialist to diagnose whether AS is present. A variety of different screening instruments are used to test different facets of the condition, and assessment generally involves a multidisciplinary team. Regarding the above list of symptoms, a person with one or two of these will not necessarily be diagnosed as having AS; a combination of several of the symptoms must be present, and a marked difficulty in social type situations. Repetitive body movements and rigid routines may be highly indicative, and there will be a general impairment in relating with others.

Intervention

As noted earlier, there is no known 'cure' for AS, yet the quality of life of the sufferer can be greatly improved. Intervention will need to be tailored to the individual, as sufferers vary greatly in the number and severity of symptoms they experience, and of course each person must be treated as an individual, to be understood in their particular life context.

Most interventions will be aimed at children, and these can take place in a variety of contexts, from schools to specialist centres. Specific services may vary across areas, but help may be accessed via your local health authority, or your local authority's education department. Playgroups and special needs classes are widely available. Whatever the treatment setting, professionals will work to improve your child's social and communication skills so that they become more able to be self-sufficient, as well as becoming more effective in interacting with other people in the world around them. For example, they will learn the rules of give and take of normal conversation. As well as communication based interventions, behaviour therapy may be used to improve obsessive or repetitive routines and physical clumsiness. Cognitive behaviour therapy may be used to help with stress management and anxiety reduction. Occupational or physical therapy may be used to address difficulties in sensory integration and motor coordination.

As well as managing distressing symptoms, age-appropriate skills - that have not come about through the course of ordinary development - will be taught, including vocational skills for older children and adults.

For AS children, it will be important to involve the family, as they have a significant part to play in improving outcomes for their child. Parents are best placed for understanding the strengths and weakness of their child. Once parents receive the right support and training for their child, and his or her particular circumstances, they can teach their child to use the behavioural techniques in the home, and thus help them to reach their full potential. As noted earlier, with the right support and encouragement, people with AS can learn to lead independent and fulfilling lives.