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Related Topics
Asperger Syndrome, Adolescence, and IdentityReview - Asperger Syndrome, Adolescence, and Identity
Looking Beyond the Label
by Harvey Molloy and Latika Vasil
Jessica Kingsley, 2004
Review by Kevin Purday
Feb 18th 2006 (Volume 10, Issue 7)

This is a welcome addition to the growing library about Asperger Syndrome. Compared with most books, this takes a slightly different approach to the subject by using a narrative approach and more specifically a combination of life stories as told by five teenagers and one almost teenager plus some additional life history material contributed by their parents. The authors used a guided (but not structured) interview technique that combined freedom with the coverage of certain specific areas that they wanted to highlight. They are both researchers and writers. Latika Vasil has a doctorate in educational psychology. Both are involved in various autism and Asperger Syndrome organizations.

The young people they interviewed were resident at the time either in Singapore or in the U.K. but two of those in Singapore belonged to the international community there and were not native to the country. This gave the authors a wide range of experience to draw upon. Lee is, at the time of his interviews, studying mathematics and computer science at Oxford University. Rachel is at a specialist school in Greater London. Sarah, the almost teenager, is Australian but attending an international school in Singapore. Chee Kiong was born and bred in Singapore. He is currently studying at a junior college there. Luke (Jackson -- he is the only one known by his real name) lives in England and is already famous for two books that he has written about autism and Asperger Syndrome. Simon is Australian/American but living in Singapore. He is attending a British international school that provides specialist education.

The themes that emerged are very useful to both those having AS and those wanting to know more about it. The first is how being diagnosed as having AS helps the individual to start making sense of her/his life. It seems that it is usually a relief to have an explanation for something one knows sets one apart. However, the second theme, labeling and identity, adds a caveat to that. Just as AS is one end of the autism spectrum, the high-performing end, so too is AS a spectrum in itself. The savant totally lacking in social skills is only one example. As part of the labeling theme, the researchers asked five questions about whether the young people accepted their diagnosis, whether they thought of AS as a disability, which parts of themselves they thought of as due to AS and which not, whom they told about their AS, and how they dealt with people's assumptions about it. None of them disagreed with their diagnosis; two of them thought AS a disability especially as regards relationships whereas the others viewed it very positively; most of them had managed to get beyond the label and were accepting themselves as themselves; whom they told about their AS depended very much on their situation -- they tended to keep it quiet with friends and acquaintances if they were in a mainstream school but felt able to share the information if they were in a specialist school; the main problem which emerged about people's assumptions was that uninformed people (and often those who should have been better informed) presumed that all those having AS had the same traits.

The third theme is socializing and making friends. This was expectedly a problem area for all of them but for some more than most. Friendship was most likely to occur with someone in a similar position where they would not have to pretend to be other than what they were. Dating was something that was going to take place later than for their NT ('neuro-typical') contemporaries. The fourth theme is schooling. Finding an appropriate school appears to be very difficult. With Britain's schools basically in a market situation where their pecking order is trumpeted by a league table, there is obviously no incentive to accept let alone spend scarce resources on students with special educational needs. The majority of international schools fare no better as most of them are private for-profit institutions. Some small specialist schools are obviously excellent as are some specialist centres inside mainstream schools. Over all, however, schooling does seem to be a problem with bullying being a major part of it. The fifth theme, family life, is interesting as it reveals that it appears quite common for a second child in an AS family to have either AS or ADHD. Mothers seemed to have good relationships with their AS children; fathers, on the whole, less so. Relationships between AS children and their siblings could be quite fraught but on occasion could be genuinely warm. The sixth theme, rages and blues, deals with the anger and depression that often accompany AS -- the anger resulting from frustration and the depression usually from the social isolation.

The book has an excellent index and a very useful bibliography. It has been excellently proof-read and reads very smoothly.

Books like this are so useful to parents, teachers, and, of course, those who have AS. Knowing how other people cope, how positive they can be and what heights of achievement they can scale is a tremendously valuable contribution. This is a very worthwhile addition to the literature on the subject.

 

© 2006 Kevin M. Purday

 

Kevin Purday works at The Modern English School, Cairo, Egypt, and has a Master's degree in the Philosophy & Ethics of Mental Health from the Philosophy Dept. at the University of Warwick.


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