Asperger syndrome in adolescent and young adult males. Interview, self - and parent assessment of social, emotional, and cognitive problems

Abstract

Descriptive and comparative follow-up studies of young adult males with Asperger syndrome (AS) diagnosed in childhood, using both interview, self- and parent assessment instruments for the study of aspects of emotional well-being, social functioning, and cognitive-practical skills have not been performed in the past. One-hundred males with AS diagnosed in childhood were approached for the assessment using the Asperger Syndrome Diagnostic Interview (ASDI), (personal and parent interview), the Leiter-R-Questionnaires, the Beck Depression Inventory (BDI), and the Dysexecutive Questionnaire (DEX). About 75% of the targeted group participated. The ASDI results came out significantly different at personal vs parent interviews in several key domains. In contrast, the Leiter-R-Questionnaires, showed no significant differences across the individuals with AS and their parents in the scoring of cognitive/social and emotional/adaptive skills. The BDI proved to be an adequate screening instrument for depression in that it correctly identified the vast majority of cases with clinical depression in the AS group. The DEX results suggested an executive function deficit problem profile in males with AS as severe as that reported in groups of individuals with traumatic brain injury and schizophrenia. Interviews (personal and collateral), and self-rating and parent-rating questionnaires all have a role in the comprehensive diagnostic process in AS and other autism spectrum disorders, and could be used as adjuncts when evaluating whether or not individuals meeting diagnostic symptom criteria for the condition have sufficient problems in daily life to warrant a clinical diagnosis of AS.

Introduction

Ever since Wing (1981) reintroduced Hans Asperger's “autistic psychopathy” (Asperger, 1944) under the new label of Asperger syndrome (AS), there has been a debate as to whether or not AS exists as a separate diagnostic entity. Several studies have been undertaken with a view to distinguish AS from the so-called High Functioning Autism, and to establish “factors” that would be specific for either group. However, no clear-cut differences have been found that would suggest appropriate differentiating criteria (Eisenmajer et al., 1998, Gilchrist et al., 2001, Gillberg and Gillberg, 1989, Howlin, 2003). In the recent past, even Lorna Wing herself has expressed concerns regarding ever having made the distinction between autism and AS (Wing, 2005), albeit that her reason for labelling these individuals as having AS, was to draw attention to individuals with a “higher-level autism”.

At the Child Neuropsychiatric Clinic (CNC) in Göteborg, Sweden, AS has been diagnosed since the mid-1980s, by Christopher Gillberg and his group. Specific AS criteria, based on the clinical presentations of Hans Asperger's original patients (Asperger, 1944), were developed at the CNC (Gillberg, 1991, Gillberg and Gillberg, 1989), and has been in use there, and in many other centres nationally and internationally, ever since. Epidemiological research on AS that was carried out in Göteborg in the early 1990s (Ehlers & Gillberg, 1993), several years before the publication of the DSM-IV criteria for Asperger's disorder (APA, 1994), found the prevalence of AS – diagnosed on the basis of these Gillberg operationalised criteria – to be 3.6 in 10,000 children 7–16 years of age.

The long-term outcome of AS has not been well researched either in our own clinic or elsewhere. Wing's clinical account of 34 cases – mostly followed into adulthood – from 1981 indicated a high rate of depression, a clinical profile suggestive of executive function deficits and a variety of other cognitive, social and daily life skills problems (Wing, 1981). Earlier reports on the outcome of AS had either referred to small, or highly selected, clinical case samples without comparison groups, and had reported low levels of employment and social functioning (Green et al., 2000, Tantam, 1991, Tsatsanis, 2003, Wing, 1981). Intellectual decline over time, as measured by the Wechsler scales, was reported in one study of the intermediate term outcome of AS (Nydén, Billstedt, Hjelmquist, & Gillberg, 2001), but has not been observed in later studies. Recent studies of the short-term outcome of AS have suggested a substantially better outcome than in autism, which may have been due to earlier and more effective interventions, or to other factors (Starr et al., 2003, Szatmari et al., 2003, Tsatsanis, 2003).

Outcome studies in classic cases of autism have reported high rates of poor or very poor psychosocial outcome (isolated life with high degree of dependency on others) (e.g. Gillberg and Steffenburg, 1987, Howlin et al., 2004, Howlin et al., 2000), and IQ has been reported to decrease over time (Billstedt, Gillberg, & Gillberg, 2005).

A few years ago our own group launched a study looking at the prognosis for males with clinically diagnosed AS. In that study 100 males with AS (IQ ≥ 70, 16 years or older on June 30th 2004, and with a follow-up period of 5 years or more after original diagnosis), were approached for inclusion. The overall aims of the AS study were to examine (1) a large number of background and associated factors in AS; (2) how 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. The present paper reports on the results relating to (4).