Autism spectrum disorder as a lifelong condition
By Dr Elisabeth Hill (Senior Lecturer in Psychology at Goldsmiths University of London)
This article forms part of a School Resource Pack created by the Progress Educational Trust (PET) as part of its project Spectrum of Opinion: Genes. The article incorporates links to an accompanying Glossary of terms, and is followed by a list of 10 key words, phrases and names and a set of Questions to consider. A more extensive version of the article can be found on PET's BioNews website.
Most of us are familiar in one way or another with autism spectrum disorder. We have seen news reports, films or documentaries that try to explain this puzzling condition, and show examples of children with unusual and repetitive behaviour. We may know someone with autism spectrum disorder. Recent evidence suggests that about 1% of the entire population - one in 100 people - falls somewhere on the autismspectrum. While we 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 of the resources and research devoted to autism focus in one way or another on childhood. However, children grow into adults, and our understanding of the lifespan impact of autism spectrum disorder is poor.
My colleagues and I have been researching the cognitive and behavioural characteristics of autism spectrum disorder across the lifespan. This work has focused on those at the high-functioning end of the autism spectrum - those whose general ability levels are sufficient to support a good level of education and independent living. While some people with autism spectrum disorder are highly successful - one well-known example is the animal scientist Temple Grandin - 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 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), organising a sequence of actions (efficiently planning and carrying out a shopping trip or working to an important deadline), and behaving appropriately in particular situations (not hiding in the stationery cupboard at work when you are needed to complete a task).
Living with autism spectrum disorder in the neurotypical world can be extremely difficult. One consequence of this is the high levels of anxiety and depression that have been identified in this group. Such mentalhealth issues can become significant, and adults often report a frustration with the medical system and the system's lack of understanding of the true nature of autism. It is important to remember that autism is a spectrum condition, and that the difficulties associated with it 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% of adults with Asperger's syndrome - that is, a proportion of those at the high-functioning end of the autism spectrum - have been able to secure long-term employment. Employment outcome for those with a diagnosis of classical autism is poorer. Furthermore, where adults with autism spectrum disorder 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.
10 key words, phrases and names
Do you know anyone who has autism or Asperger's syndrome? If so, how did you find out they had the condition? If not, how do you think you might find out if someone has the condition?
Assume that you have autism or Asperger's syndrome, and you apply for a job - would you say in your job application that you have the condition? Assume that you are an employer looking to hire someone for a job - would you prefer people with the condition to say in their job application that they have it? Why?
What might we do to make life less difficult for people with autism and Asperger's syndrome?