Further Information
One of the first questions that may need consideration is whether or not the needs of the individual are best met alongside others with similar needs. Despite the danger of stigmatising individuals by communal community living situations and the risks of a negative impact on the individual’s self-perception, Donna Williams (1996) puts forward a positive argument for people with autistic spectrum disorders living or working together. As a person with autism she describes the benefits of recognising that she is in the company of someone else whose way of making sense of the world is like her own.
For the carers involved in supporting the individual, an understanding of the complexities and impact of Asperger Syndrome is essential and it may be that this is more likely to be achieved in a setting which is autism specific where there is improved access for the carers to appropriate training, support and knowledge.
However, there may be an overriding individual desire to be totally independent of any formal support system and in such situations it may be difficult to provide the support that is apparently required. Statutory and independent care providers need to be able to provide flexible services which can incorporate the more informal support systems that the individual may tolerate. Including acceptance of specific support and involvement with formal carers as part of the negotiated condition of independent living can be a useful tactic in ensuring that the individual receives an adequate service. This may be more easily accepted if it is planned before moving into independent accommodation rather than being introduced once the individual’s new patterns of lifestyle have become rigidly established.
A number of issues have been identified as important for any carer who is supporting the needs of a person with autism in the community (Morgan 1996). Good communication between colleagues, awareness of stress, ability to emphasise and a focus on the implications of autism are vital components of a good support service to all adults, irrespective of their place within the autistic spectrum.
Any young adult wishing to move on from living in the home is at a vulnerable time of his life. Physical and emotional changes are taking place at the same time in life as other major life changes such as moving from education to occupation. Whilst the young adult with Asperger Syndrome may see and understand the practical changes that are taking place in their lives, they may experience difficulties in understanding the subtle changes in what is expected of the way a young adult should behave. This often seems to lead to confusion, anxiety and a history of failed social contacts.
Access to someone who can give practical advice and counselling may make a crucial difference in the long term success to an individuals independence.
Difficulties in anticipating the reality of living away from home may be experienced by any young adult but especially those with Asperger syndrome. Careful planning including accurate assessment of support needs are consequently essential in providing the required level, style and quality of support. Asperger (cited in Frith 1991) noted that the parents were the people who invariably knew the individual best, what level of support they required. Although the individual is an adult, assessment and planning processes must include everyone who has knowledge of the individual. This approach can be seen by some professionals and the individual themselves as unnecessarily overprotective but the challenge often faced by many families is to convince others that the young person who appears to be a competent and verbally skilled adult, has significant support needs.
The ideal of residential support is that there should be a wide range of available options (Van Bourgondien and Schopler 1990). The danger is that the constraints of community care, politically correct care philosophies, finite resources and inflexible thinking, result in a limited range of options for an adult with Asperger syndrome needing residential support.
Support requirements may be very individualised in response to their individual motivations such as room for the model trains or space for the aviary. The challenge to service providers and purchasers I s to be creative and flexible in meeting this diverse range of needs. It is easy to be dismissive of considerations that do not seem essential but to the adult with Asperger syndrome it might mean the difference between success and failure.
References
- Autism and Asperger syndrome Frith,U.(1991). Cambridge: Cambridge University Press
- Adults with Autism Morgan,H. (1996) Cambridge: Cambridge University Press
- Journal of Autism and Developmental Disorders - Critical Issues in the Residential Care of People with Autism Van Bourgondien, M.E. and Schopler, E. (1990)
People with Asperger syndrome have traditionally not participated successfully or frequently in supported employment schemes for people with disabilities. Such schemes are often geared to the needs of people with a wide range of disabilities and as such do not accommodate the very specific employment support needs that might be experienced by the person with autism.
Also, we encounter an additional difficulty when we look at how to support the individual with Asperger syndrome in their vocational and occupational activities as it is too easy to become focused on what are seen as traditional work settings and arrangements.
Consequently, it is important that service providers are able to provide appropriate support in the work place for those who need it and such support systems need to be varied, flexible and often very individualised. Having a knowledge of autism can help in deciding which areas and styles of employment might be successful. It is important to take account of the individual’s preference of occupation - "we would not normally expect an adult to spend significant amounts of time doing something they do not enjoy" (Lovatt 1996).
This is easily forgotten when professionals focus on the skill deficits rather than on what an individual enjoys doing.
In this way it may be possible to channel the fixations and passions of the individual into a productive, employable skill.
"As to fixations, channel them into positive actions. Singleness of purpose (persistence) can work wonders. High functioning autistic adults, who are able to live independently and keep a job, often have work that is in the same field of interest as their childhood fixations." (Grandin and Scariano 1986 pg 150)
Recent research into the correlation between families with a positive genetic predisposition to autism and families employed in scientific and technical professions has been carried out by Baron-Cohen et al (1997). The prediction that parents (especially fathers) would be over-represented in engineering as a profession was confirmed. This leads to the suggestion that there are likely to be areas of employment in which adults with autism and Asperger syndrome may be more suited and more successful in than others.
When considering occupations for an individual, assessment of what motivates the individual may provide clues as to where success is most likely to be found. The motivation to work for most people is financial but for many adults with a disability there may be a benefits trap which means they could have difficulty securing employment which will pay sufficient to cover the benefits they would lose if employed. This may also be the case for an adult with Asperger syndrome, although for some, their level of skills and specific interests may give them access to employment with greater financial benefits.
Finance is not the only motivating factor behind an individual’s desire to seek employment, although it may be that other motivating factors are behind the choice of occupation rather than the reason for it. Many of the other commonly voiced motivators to work are "either social or connected with the individual’s self perception" (Burkin 1998). For example, meeting people, making friends, one’s status in society, passing on skills and knowledge are all strongly connected with how a person is perceived by others. It may be that the social and perceptual difficulties experienced by a person with Asperger syndrome mean that the same considerations are seen as pressures of working rather than as motivators.
It is for this reason that our support services for adults with Asperger Syndrome are seen as occupational opportunities rather than employment opportunities. This reflects the practical reality that, for some, open mainstream employment may not be an achievable target. The alternative option - and possibly preference - may be to be supported in alternative occupational opportunities such as voluntary work, further education or autism specific sheltered work schemes.
As with all areas of support to an individual, the ideal situation is one where a range of different employment and occupational opportunities are available with the support that is specific to the individual’s needs. This should range from open employment with minimal support through a range of other occupational opportunities.
Success in the work place can be achieved if the important factors are addressed. These include clear definition of task, minimal distraction, knowledge of what motivates the individual, predictable and reliable support strategies and positive reception from colleagues.
For each individual the solution and support required (if any) is likely to be very different. The challenge to the professional support service is, as always, to be prepared to be innovative and creative, challenging the traditional views of employment and providing "meaningful daytime activity" to achieve a lifestyle that is rewarding and positive for the individual.
References
- Baron-Cohen S. Wheelwright S. Stott C. Bolton P. Goodyear I. (1997). Is there a link between engineering and autism? Autism, the International Journal of Research and Practice 1, 101-109.
- Burkin K. (1998) Prospecting for Work Communication, NAS London
- Grandin T. and Scariano M. (1986) Emergence Labelled Autistic Novato, Calif Arena Press
- Lovett H. (1996) Learning to Listen London: Jessica Kingsley Publishers (available from Society HQ - see resources section)
Richard Ibbotson, Previous Manager of Services, The Scottish Society for Autism
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