The challenge of adolescents and adults with Asperger syndrome

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Challenge 1: who is responsible for helping adolescents and adults with Asperger syndrome?

It is clear from the historical summary that, by default and by tradition, the answer to this challenge is “parents or other caregivers.” Parents readily accept this responsibility because they have felt responsible for their child since he (or less often, she) was born, or shortly thereafter. From the time, in fact, that they realized that their child was different and was in some way, albeit difficult to characterize, vulnerable to others' exploitation and influence.

Another answer might be

Challenge 2: how much of a service do we need to provide?

The upshot of my consideration of the first challenge—who should be responsible for helping people with AS—is that no one profession has all the necessary skills. Teamwork is therefore necessary. But teams are even more expensive than individuals and in these cost conscious days, how much can we afford to spend on AS? How much should third-party payers and parents spend?

One kind of answer is to find out how prevalent AS is. As studies considered elsewhere in this issue have shown, there has

Challenge 3: social exclusion

The first five items on this list begin with the expression, “Those who want …” People's wants are shaped by their understanding of what is available to them. They discover what is available through advertising, but also through word of mouth or through their general cultural understanding. The latter two sources of information may be denied people with AS who, as many parents and spouses often say, may live in a world of their own. Even when people with AS are not deliberately marginalized by

Challenge 4: working with caregivers

Children's interests are fiercely guarded by most parents. Only children with AS who are unfortunate enough to live in a dysfunctional family or lack parental care miss out. But parents are more loath to push for services for an adult child, and their reluctance is usually reinforced by the institutional resistance in adult services to dealing with parents. The preoccupation with individual rights and autonomy that has superseded the excessively paternalistic services of yesteryear means that

Challenge 5: diagnosis in adulthood

The diagnostic criteria of DSM-IV and ICD-10 incorporate Wing and Gould's triad of social impairments. These were developed in an epidemiologic survey of children [21], and they are less applicable to adolescents and adults. For example, the stereotypies, preoccupation with parts of objects and the lack of showing, bringing, or pointing out objects of interests—all features listed in DSM-IV—are signs of AS that usually disappear by adolescence. Other features, such as obsessive interests, a

Challenge 6: why make a diagnosis?

Diagnosis has traditionally been the route by which people with AS and their caregivers or supporters have accessed specialist services. But this tradition has grown out of the services for people with autism who were severely disabled by their condition under all circumstances. The group of people with AS, who Fitzgerald has argued [26] may have Wittgenstein, Newton, and Einstein among their number, include many people whose social impairment is arguable. Is a loner with a passionate interest

Challenge 7: the challenge of comorbidity

There has been little systematic inquiry about psychiatric morbidity in AS after childhood (see Towbin, this issue). In the author's practice, a consecutive sample of 234 adolescent and adult patients had received the previous diagnoses shown in Table 2 (some diagnoses were duplicated). The diagnostic rate of schizophrenia is over-inflated because schizophrenia was the commonest diagnosis used to explain the symptoms of AS. Careful retrospective assessment of the cases in which this diagnosis

Challenge 8: people with AS as aggressors and not just victims

The history of PDD has been one of parents or caregivers pushing for recognition and help for PDD. People with AS, like other people with PDD, are regularly victimized and even more regularly misunderstood. Naturally, they and their parents feel that they are unjustly treated and inappropriately discriminated against. They are the victims of a society that puts a considerable premium on reciprocal social relationships.

Considering people with AS as aggressors seems to fall in with exactly the

Acknowledgements

The author is grateful to the many patients and caregivers who have taught so much about AS. Being able to get to know about their struggles and successes has been one of the most rewarding experiences of the author's professional life. The author is indebted to Emmy van Deurzen, whose ability to accept and work with difference has been an inspiration and who has consistently provided wise counsel.

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