3.4 Growing up with ASD
Follow-up studies of people with ASDs suggest that most have life-long difficulties of some kind. Peeters and Gillberg (1999) estimate that about two thirds of those diagnosed before school age remain dependent on others for support and housing as adults. However, for some individuals at least, the pattern of symptoms changes and becomes less severe with age.
Kanner (1973) traced the progress of 96 individuals in their twenties and thirties, whom he had seen as child patients. Twelve had made reasonably good social adjustments and were leading fairly successful independent lives. Of these, eleven had jobs (though usually not commensurate with their qualifications) and one was still at college. Seven had their own homes (others lived with parents) and one, a successful musical composer, was married with a child.
In a review of outcome studies, Howlin and Goode (1998) suggest that the prognosis is best for children with ‘High Functioning’ or ‘Asperger's type’ symptoms, which is perhaps not surprising, since they seem to be less seriously affected in the first place.
Kanner commented that, in most of the ‘successful’ cases, during the mid-teens ‘a remarkable change took place … Unlike most autistic children they became uneasily aware of their peculiarities and began to make a conscious effort to do something about them’ (1973, p. 209). It seems that these children had spontaneously attained some awareness of self and others.
In one respect, however, this enhanced awareness may accentuate problems: it brings with it a recognition of being different, of ‘missing out’ on the richness of others' social experience, or of making unintentional social ‘gaffes’ that lead to further isolation:
To us, most normal people … are social Mozarts who intuitively learn to employ a very complex set of rules and standards fluidly and creatively, seemingly with little or no effort; we, on the other hand, are stuck with the sheet music, trying to memorise scales and plonking out simple tunes one note at a time.
(Sainsbury, 2000, p. 88, Joseph, writing about himself)
This awareness of difference can occasionally have devastating consequences including depression and, in a few cases, attempted suicide (Howlin and Goode, 1998).
Another predictor of outcome is having a specialised skill or interest. Kanner (1973) observed that several of the group of twelve had used their special interests to identify a niche and ‘open a door for contact’. It seems that they used their skills to define themselves as individuals, and to provide a basis for social exchange with others. In the case of Stephen Wiltshire, his special interest and talent have been a powerful force for personal and social development even though his disability is profound. It is also interesting that both Stephen and Tito had determined and resourceful mentors who helped them to channel their talents and transcend their problems. This highlights the potentially important role of the child's interactions with his/her social context in fostering positive development.
Studies of outcome point up quite sharply the scope for ‘outsider’ and ‘insider’ viewpoints to shed different light on a question. Outsider studies evaluate success in terms of indices such as independent living, employment and number of social contacts, whereas insider accounts tell us about the feelings and experience of the individual. What counts as ‘success’ from the outside may nonetheless be experienced by the individual as loneliness and isolation.
Follow-up studies: Longitudinal studies of individuals, typically focusing on the outcome of early difficulties.
Prognosis: Prediction of outcome, especially in relations to whether a psychological problem ameliorates, persists or worsens.