Boys with Asperger Syndrome grown up. A longitudinal follow-up study of 100 cases more than 5 years after original diagnosis

Abstract

Introduction and aims: In 1981, the diagnostic label of Asperger Syndrome (AS), was coined after the Austrian paediatrician Hans Asperger, by the English psychiatrist Lorna Wing, who reintroduced his 1944 work about “die autistischen Psychopathen im Kindesalter”, so as to have a concept for relatively high functioning individuals with problems in the “autism spectrum”. Little is known about the risk factors and outcome of AS and whether or not they are different from those of autism. The present study were to examine (1) a large number of background and associated factors in AS; (2) how aims of the different kinds of background factors influence IQ, neuropsychological skills, and psychomotor development in males with AS; (3) the outcome of AS in males, and compare it to that of a similarly aged group of males with autism; and (4) to what extent males with AS acknowledge problems related to their diagnosis, and agree with their parents on these matters. Subjects and methods: Medical records of 100 clinical cases of males with AS diagnosed at least five years prior to the present study were searched for information concerning background and associated factors. Sub-grouping in accordance with operationalised “pathogenetic” factors was attempted, and the influence of subgroup on psychomotor development, IQ, and degree of autism spectrum problems was investigated. These 100 males (and their parents) were approached for inclusion in a follow-up study. Seventy-six of the families participated in this in-depth study. The individuals with AS were evaluated at neuropsychiatric examinations, neuropsychological testing, and by interview schedules and questionnaires, some of which were used with their parents as well. Those 70 males with AS whose parents/carers had been given the Diagnostic Interview for Social and Communication disorders were compared with 70 males with autism of similar age. Specific outcome criteria were used taking into consideration, employment, education/vocational training, independent living, and peer relations. Results and Discussion: Mean age at original diagnosis was 11.3 years. In 28 cases there was a strong suspicion of autism spectrum problems in close relatives, 12 of whom had been formally diagnosed with autism or AS. Some pre- and perinatal risk factors were much more common than in the general population. No definite clue as to “pathogenesis” could be established in 13%. Intellectual ability was average, and more than half the group had a verbal over performance IQ difference of 15 points or more at original diagnosis, consistent with so called Non-Verbal Learning Disability (NVLD). However, at follow-up fewer than 20% had indications of NVLD. For the AS cases followed up diagnosis and overall IQ were stable over time. However, 12% no longer met criteria for an autism spectrum disorder. Overall outcome was good in 27% of cases, but 26% had a very restricted life, with no occupation/activity and no friends. Outcome in the autism group was significantly worse, possibly due to the much lower IQ in this group. The males with AS had a good understanding of their own problems in some areas, but disagreed with their parents regarding some core AS symptoms. In spite of the much better outcome than in the autism group, prognosis in clinical cases of AS appears to be restricted as compared with individuals at the same IQ-level in the general population. However, given the lack of a general population comparator group, no generalized conclusions can be drawn in this respect.