Autism spectrum disorder as a lifelong condition

Most of us are familiar in some way or another with autism spectrum disorder (ASD). We have seen news reports, watched films or documentaries trying to explain this puzzling condition and showing examples of a child's unusual social, communication and repetitive behaviours. We may know a child with ASD or have a child with ASD. Recent evidence suggests that about one per cent of the entire population (one in 100 people) fall somewhere on the spectrum (1-2). Whilst we still understand relatively little about this complex condition, we do have a good idea of how it can affect the daily lives and education of children.

But what happens next? Most service provision resources and research funding for ASD focuses in some way or another on childhood. However, children grow into adults and our understanding of the lifespan impact of ASD is poor. Until recently very little attention has been paid to the adult end of this group.

We have been addressing this question through our research into the cognitive and behavioural characteristics of ASD across the lifespan. This work has focused on those at the 'high-functioning' end of the spectrum; those whose general ability levels are sufficient to support a good level of education and independent living. While some people are highly successful (one well known example is that of Temple Grandin, a Professor of Animal Science at Colorado State University in the United States (3)), many do not fulfil their potential. It is important to profile the nature and extent of difficulties in this group in order to support affected individuals and their families. Our work and that of other groups around the world shows that the difficulties navigating the social world persist for adults on the spectrum. For example, although adults tend to have some understanding of the social complexities of daily life, these are dealt with in a routine, rigid fashion so that interaction still seems odd. Often interaction is scaffolded by the use of logical rules that have been extracted from past experience but which do not allow for subtle changes in behaviour specific to the current situation. There may also be difficulties in adapting to new situations (a change of system in the workplace or a new lodger moving in to a shared house, for example), organising a sequence of actions (efficiently planning and carrying out a shopping trip or working to an important deadline for example) and behaving appropriately in particular situations (not hiding in the stationary cupboard at work when you are needed to complete a task, for example). Living with ASD in the neurotypical world can be extremely taxing. One correlate of this is the high levels of anxiety and depression that have been identified in this group. Such mental health issues can become significant and adults often report a frustration with the medical system attributable to a lack of understanding of the true nature of autism. At this point, it is important to remember that autism is a spectrum condition: the particular difficulties vary from adult to adult and even within the same individual at different times.

Another striking factor is the low levels of employment seen in this group, with best estimates indicating that only 20 per cent of adults with Asperger Syndrome (i.e., a proportion of those at the high-functioning end of the autism spectrum) have been able to secure long term employment, and employment outcome for those with a diagnosis of autism is poorer. Case studies suggest that poor employment experience and outcome may be associated with poor mental health consequences and that a striking factor that appears to link to longer-term employment success is the nature of any support provided, suggesting strongly that supported employment schemes and employer/employee training would be a valuable use of resources (4-5). Furthermore, where adults with ASD are unable to secure employment, this places ongoing financial demands not only on their parents but also on those associated with additional care such as the benefits system, thus providing a significant economic burden to the nation (6).

In 2008, and in recognition of the lack of appreciation of awareness of autism in adults, the UK's National Autistic Society launched the 'I Exist' campaign (7). Since then, a number of initiatives to profile the situation for adults with ASD have been set up. These include the Transitions Inquiry undertaken by the All-Party Parliamentary Group for Autism (APPGA), the Department of Health's consultation on 'a future strategy for adults with autistic spectrum conditions' and the National Audit Office's report on service and provision for adults on the autism spectrum (8). It will be important to identify the key findings of these and implement them.

Dr Elisabeth Hill is advising the charity that publishes BioNews, the Progress Educational Trust (PET), on its project Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders. She is co-editor of Autism: Mind and Brain (buy this book from Amazon UK or Amazon USA), and she has contributed a chapter to Autism: An Integrated View from Neurocognitive, Clinical, and Intervention Research (buy this book from Amazon UK or Amazon USA).