This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.
Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.
Whilst some of the terminology of this article may cause distress to some autistic readers, please be aware this article has been included because the author makes some relevant points about the diagnosis process and has published some research which is covered in the main issue (P10 An analysis of the diagnostic process at the CLASS clinic). We are also publishing it in order to highlight the ‘autism as a disorder and deficit’ approach of the clinical community. As The Autism Issue challenges this view, it is important this article is read in conjunction with the full issue here.
What is Autism? by Dr. Sarah Cassidy
Approximately 1% of the population (around 700 000 individuals in the UK), are living with an autism spectrum condition. Autism spectrum conditions affect development of the brain and behavior. People with autism have marked difficulties in relating to and communicating with others, and may, for example, struggle to maintain peer relationships or hold a conversation. They also show repetitive behaviours, or a narrow range of obsessive interests. This may involve memorizing and discussing details and facts about a particular topic to the exclusion of other activities, having to take a particular route each day to school, or having to follow a set routine.
Autism is described as a spectrum condition because the severity and presentation of symptoms vary widely between individuals. Those with “classic autism” have very limited language or communication skills, whereas individuals at the “high functioning” end of the spectrum can have good verbal ability. Asperger Syndrome is a subgroup on the autism spectrum that includes the core characteristics of autism but in the absence of any language delay or intellectual disability.
What difficulties do individuals with autism face?
To date, most research and intervention has focused on children with autism. In my own research however, I have been particularly interested in uncovering the nature of the difficulties that adults with autism spectrum conditions face in their daily lives so that we can better support these individuals.
Adults and young people with Asperger Syndrome are faced with particularly unique challenges – not least of which is getting a diagnosis. Although children with autism are diagnosed, on average, around 5 years of age, diagnosis is usually delayed until about 11 years or even into adulthood for those with Asperger Syndrome.
Transition into adulthood for people with autism spectrum conditions is a particularly challenging time because it is often accompanied by a lack of support services. This, in turn, can lead to poor outcomes in terms of health and social difficulties, quality of life, achievement of occupational potential, social exclusion and isolation and high rates of depression. The evidence shows that due to a lack of appropriate support, adults and young people with autism are suffering unnecessarily.
Our most recent research study focused on adults with Asperger Syndrome and clearly demonstrated the potentially tragic consequences of failing to diagnose and support these individuals. We analysed data from the Cambridge Lifetime Asperger Syndrome Service (CLASS), run by Cambridge and Peterborough Foundation NHS Trust (CPFT) in the UK. The CLASS clinic specializes in the very late diagnosis of Asperger Syndrome in adulthood, for those who may have slipped through the net as children when Asperger Syndrome was not yet recognized as a disorder.
We explored whether adults diagnosed with Asperger Syndrome at the CLASS clinic between 2004 and 2013 were at high risk of suicide, and whether depression and level of autistic traits were significant risk factors in this. Worryingly, we found that these adults with very late diagnosis of Asperger Syndrome (at 31 years old on average) were over 9 times more likely than the general UK population to report that they had contemplated suicide at some point in their lives, and were significantly more likely to report suicidal thoughts than patients with psychosis. Diagnosis of depression or high autistic traits were significant risk factors for having planned or attempted suicide at some point in their lives.
What more can be done to support adults with autism?
Surprisingly, there is still very little research into the life experiences and difficulties adults living on the autism spectrum face. It is clear, however, that more must be done to support adults with autism spectrum conditions, and promote wider recognition that autism is not only a condition which affects children, but is an enduring condition which needs support across the lifespan.
About the Author:
Dr. Sarah Cassidy is a post-doctoral researcher at the Centre for Research in Psychology, Behaviour and Achievement at Coventry University, and a visiting researcher at the Autism Research Centre, University of Cambridge. She has a PhD in Psychology from the University of Nottingham. Her research interests include adult outcome, emotion processing and intervention in autism spectrum conditions.
READ THE AUTISM ISSUE FOR FREE
The Autism Issue of The New Idealist magazine explores why autism is so misunderstood by society and turns the commonly-held view of autism perpetuated by the media on its head. You can find out more and read or download the issue free of charge here.
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