Asperger Syndrome is a developmental disorder and shares the core triad of impairments with autism. It is characterised by qualitative impairments in social understanding, communication and a repertoire of restricted repetitive and stereotyped patterns of behaviour, interests and activities. There is a reported prevalence rate of 36 per 10,000 (Ehlers and Gillberg 1993); the ratio of boys to girls is in the region of 10:1 (Gillberg 1991). High-functioning autism is a term that refers mainly to the group of individuals (20–25%) diagnosed with autism but who are of good intellectual ability with good expressive language. Both terms are retained here to reflect the commonality of needs, but also to acknowledge the subtle differences.
For many years children with Asperger Syndrome were labelled as emotionally disturbed, behaviourally disturbed or just bold and disruptive, causing great distress to their parents. Early and accurate diagnosis is essential so that specific educational programmes and support services can be geared to their needs.
A developmental disorder does not disappear when a child reaches thirteen years. Significant educational difficulties are experienced by this group in the childhood years, and outcome in adulthood is variable, with many living severely restricted, isolating lives. Outcome in terms of employment, independent living, relationships and psychological well-being is also variable.
In a summary of outcome studies of adults with high-functioning autism and Asperger Syndrome, Howlin (2000) indicates that 41% suffer from depression, 9% from bipolar disorder, 9% from schizophrenia and 8% from anxiety. Howlin points out that these figures are derived from a number of follow-up studies and therefore do not represent incidence rates. The majority of studies are of small sample size. Attendance at third-level education varies between 5% and 50%, and the number in paid employment ranges from 5% to 55%. However, outcome has been shown to improve with early intervention and appropriate education (Howlin 1999; Jordan and Powell 1995), supported employment schemes (Mawhood and Howlin 1999) and community support programmes (Macleod 1999).
Participants were identified through the database of a local Parent Advocacy Group. The age range was 16 to 31 years, with a mean age of 23 years. They were all living at home. Twenty-three questionnaires were posted and eighteen were returned, giving a response rate of 78%. The questionnaires were filled in by parents, with the exception of one participant who replied on their own behalf. Because five of the respondents did not indicate a confirmed diagnosis of Asperger Syndrome or high-functioning autism, only thirteen were included in the survey analysis. Difficulty in obtaining a diagnosis was a significant factor; approximately 50% of the group had gone outside their locality to obtain a diagnosis. The fact that five people who returned the questionnaire had not received a definite diagnosis emphasises this problem.
The questionnaire consisted of six sections: biographical data, educational history, current educational status, employment status, social life/relationships, and mental health issues.
Seven of the respondents had attended a mainstream pre-school and three had experienced both special and mainstream facilities. Three had not attended pre-school.
Difficulties were already apparent at the pre-school stage—not mixing well, being a loner, poor socialising, difficulties in communication, or no language skills. Bullying/taunting was indicated and disruptive behaviour was noted in one case. On the positive side, three of the seven who had been in a Montessori setting managed well and had a satisfactory experience.
Twelve of the respondents commenced their primary education in mainstream schools and one attended a special class throughout. However, three individuals were transferred to a special class (in a mainstream school), and of those, two later moved to a special school for children with general learning disabilities and one left the primary school system to be taught at home.
The other nine children completed their primary education following a mainstream curriculum. However, the comment of one parent was particularly interesting: ‘While he attended mainstream primary school, the psychological damage inflicted upon him was horrific. He was bullied, isolated, excluded and damaged beyond repair.’
Another worrying trend emerges in relation to secondary education. Five individuals in this study went through mainstream secondary education, but one of them had to leave and spent a year out of school before being enrolled in a different secondary school with some extra support. (The level of that support was reported as unsatisfactory.) Three continued to attend a special school for children with general learning disabilities; two attended a special class at secondary level. Three did not complete secondary school, one of them after spending two years in a special school for children with a mild learning disability.
Respondents indicated that ten of the thirteen young people with high-functioning autism/Asperger Syndrome had received no specialist educational support specific to their needs. This includes both those in mainstream and special education. Where support had been received, it was reported to have been unsatisfactory.
Although young people with Asperger Syndrome are of average or above-average cognitive ability and the majority of the families in the study had (at least initially) aspired to mainstream education for their children, only three of the thirteen had attended any form of third-level education. One of these obtained a BA through private study in the Open University.
Nine of the individuals surveyed were eligible for work. However, only one was reported as being in full-time paid employment (an employment which was not rated as satisfactory). Six were in some form of vocational training, or in part-time or full-time supported employment. Three respondents stated that the supported employment was unsatisfactory and that the person was not fulfilling their potential, while the other three expressed satisfaction (although two of these did not feel that the person was reaching their potential). One person was in supported employment for only about six hours per week. Two people were at home full-time, with no formal occupation, although they wanted to work. Four individuals in the survey are currently in education.
Respondents stated that eleven of the individuals did not have a close friend outside their family. Of the other two people, one relies on the friendship of a classmate. Ten do not socialise outside the family. Of those who do, one has joined local music and theatre groups and another goes to the cinema or socialises with voluntary groups. Many of the respondents indicated that the person only engages in social activities which are provided by and closely supervised by family or by close friends of the family, and that this puts considerable strain on the families.
The survey showed that twelve of those sampled suffer from anxiety, seven from depression, and seven from fears and phobias. While nobody indicated a diagnosis of schizophrenia, eleven are reported to suffer from poor self-esteem. The majority of the group indicated a combination of difficulties. Four are currently in receipt of mental health (i.e. psychiatry/psychology) services, one of them on a private basis. Contact had been greater when the group were children—during that time ten had consulted either a psychiatrist, psychologist, speech and language therapist or other health professional. Twelve have not attempted suicide, but four have expressed suicidal ideation or the wish to die.
One parent commented that it is often parental support that keeps the person afloat, but that this is at a very high cost on parents’ own friends, lifestyle, peace of mind, plans for the future and their own family relationships. Another respondent said: ‘The cost is our lives and every penny we earn.’
Outline of needs
When asked to outline the service needs of their adult children with Asperger Syndrome/high-functioning autism, respondents emphasised the following elements:
- a structured lifestyle,
- reduced dependency on parents/family,
- employment where disability is recognised and understood,
- life-skills training,
- mental health services that are specific to individuals with Asperger Syndrome/high-functioning autism,
- good-quality education,
- help in forming relationships and building self-esteem,
- access to appropriate training and courses to enable them to find appropriate work.
As one respondent pointed out: ‘He needs to be supported to enable him to have a life.’
As Tantum (2000) recommends, ‘An effective service for people with Asperger Syndrome should include medical and functional assessment, but needs also to include psycho-education, family intervention, medical and psychological treatment for emotional and conduct problems.’ He also emphasises the need for ‘professionals who understand the subjective experience of Asperger Syndrome and can respond appropriately to the triumphs and disasters that people with Asperger Syndrome experience’.
While conclusions drawn from the small sample of this study can only be tentative, the survey does underline and echo the major themes in the literature and in clinical practice: the significant difficulties experienced in the education system, the social isolation and the high dependency on families for support and care. The high levels of psychological difficulty reported and the apparent absence of multidisciplinary support services are areas that need to be addressed. Many of the people are staying at home or participating in training programmes that are perceived as inappropriate to their needs—this too is an important service issue for the future.