Autism and Asperger's syndrome were first described in children and subsequent service provision and research have both targeted that age group. In the decades immediately following Kanner and Asperger's descriptions, relatively little was known about the long-term course of these disorders. Because almost all diagnoses were made in children, the main goal of parent-led groups was to establish autism-specific childhood education. Although we have known for some time that ASDs persist throughout life, for multiple reasons attention has largely remained on childhood. For instance, energetic parents of children have always been important catalysts for specialist educational provision and have leveraged significant research funds. Also autistic symptoms fall clearly within the field of developmental psychology and their study has been a significant element in the development of that discipline. More recently there has been an increasing focus on early diagnosis and intensive early intervention, with the objective of ameliorating or “curing” autistic behaviours. Even developmental neurobiologists are now starting to discuss the possibility of developing early pharmacological treatments to address putative abnormalities in synapse formation, axonal pathfinding etc. The consequence of this strong paediatric focus has been a significant development of services and an expanding corpus of knowledge about autistic psychopathology and its neurobiology in childhood.
Nevertheless, most affected individuals are adults: the majority will have intellectual abilities within the normal range and many will have no diagnosis. Moreover, parents frequently lament unfulfilled potential and poor quality of life. Unfortunately, limited services for adults are the norm in most affluent countries. For individuals diagnosed in childhood, concomitant intellectual difficulties will usually ensure progression to some sort of adult service, whereas more able individuals usually become service “orphans”. For adults without a diagnosis, the outlook can be bleak. Adult Psychiatric Services may believe they lack the expertise and resources to diagnose and manage adults with ASD. Social services are often overwhelmed by crises in other client groups, and, although affected individuals may be eligible for some sort of unemployment or incapacity benefit, schemes to help people with ASD into work are rare. Quite why the needs of adults have been so neglected is hard to understand. But the paucity of parental advocacy groups for adults, the lower empathy with and tolerance for adults than children and the lack of education for professionals about adults with ASD are probably relevant factors. Moreover, only recently has academia fostered the study of adults.
The relative neglect of adults with ASD has both societal and research implications. Clinicians know that able adults can continue to acquire useful new skills throughout life and many employers value the specific contributions of individuals with ASD. But there are relatively few schemes to develop daily living skills across the lifespan, most Universities lack mentorship schemes for students with ASD, help into employment is the exception and frequently individuals with a job could achieve more. It is hard not to conclude that societies are simply not ambitious enough for adults with ASD. With respect to research, the study of adults offers particular opportunities. Most obvious is the ability to include individuals who would not have been able to cooperate with neuropsychological or imaging research in childhood. Also, in adult life IQ will usually be stable and physiological processes can be investigated independent of chronological developmental change. Finally, adults have passed through the main risk periods for comorbid disorders such as epilepsy, so for genetic studies their phenotypic status is less ambiguous.
Improving the lot of adults with ASD first requires recognition of their unmet needs, either through Governmental reports (E.G. the report by The National Audit Office in the UK (http://www.nao.org.uk/publications/0809/autism.aspx)), or through the work of autism charities. Case finding studies will also be important not only for undiagnosed individuals but also for drawing attention to the scale of the issue. Advocacy groups focused on the needs of adults should aim to replicate past successes in improving childhood services, which will depend heavily on educating professional groups dealing with adults. Moreover, there is still much we do not know about teaching affected adults independence skills, the complexities of long-term partnerships and parenting and the need for friendships and effective social supports. Enlightening employers about the value that individuals with ASD can add to their companies will also be crucial. Moreover, increasing employment opportunities is a win–win situation for Governments, as disability payments reduce and income taxes increase. Indeed for adults with ASD, successful employment is a key factor in establishing and maintaining self-esteem, building social networks and in facilitating independent living, but often targeted help is needed to successfully obtain and hold down a job. With respect to outstanding research questions, understanding the strong co-morbidity with anxiety and depression and improving pharmacological interventions would have significant practical impact. Investigating why able women with ASD are relatively under-diagnosed, identifying the mechanisms adults use to acquire new skills and starting to characterize the aging process in autism are also important. Overall, the challenge is to ensure that legislation, budgets and scientific endeavor reflect the reality that children with ASD grow into adults with ASD.