In this article, Dr Sarah Cassidy of the Centre for Research in Psychology, Behaviour and Achievement, Coventry University, gives a brief introduction to the latest research and practical suggestions for assessment and prevention of suicide for autistic people.
Author: Dr Sarah Cassidy
Suicidality in Autism: Risk and Prevention
How common are suicidal thoughts and behaviours in people with autism?
A growing body of research evidence is showing that many people with autism experience mental health problems, such as depression and anxiety, at some point in their lives. Depression is a well-known risk factor for death by suicide in the general population. One large research study showed that over 90% of people who died by suicide were also diagnosed with depression. But what about suicide risk in people with autism?
In my research, I encounter a lot of concern from clinicians, and carers, who are supporting people with autism experiencing suicidal thoughts and behaviours. However, there has been very little research in this area. Studiesi have shown high rates of suicidal thoughts (10.9% – 66%), and suicidal behaviours (11% - 30%) in adults and children with autism. Between 7.3% - 15% of people who have been hospitalised for attempted suicide also have an autism diagnosis. This is much higher than the 1% rate of autism diagnosis we would expect in the general UK population.
These figures show that suicidal thoughts and behaviours are worryingly high in people with autism. However, there is a wide range in these figures, with some studies showing a quite low proportion of people with autism experiencing suicidal thoughts (10.9%), and others very high a very high proportion (66%). This is most likely because of differences in the way the research was carried out; 7.2% of parents of children with autismii report their child has suicidal thoughts, whereas 66% of adultsiii newly diagnosed with Asperger syndrome report having suicidal thoughts at some point in their lives . It will be very important for future research to explore how many people with autism experience suicidal thoughts and behaviours, the role of factors such as age, time of diagnosis, and how these are measured.
Assessing suicide risk in people with autism
So how can clinicians effectively assess suicide risk in people with autism? At the moment there are no assessment tools for depression or suicidality which have been developed specifically for people with autism. However, there are important things to consider when assessing suicide risk in these individuals.
For example, many people with autism also experience mental health problems, and social difficulties such as bullyingiv – both these factors have been shown to increase risk of suicidal thoughts in people with autism. So it is important to be alert to the potential risk factors the person may be experiencing, and gather background information about these.
There are also aspects of autism which must be taken into account when asking these individuals about their suicidal thoughts and behaviours. For example, some people with autism tend to interpret questions literally, such as “have you ever attempted suicide?” This could potentially lead to over-reporting. So it is very important to probe the specific circumstances and check understanding of the questions. Some people with autism can also have difficulty describing their own internal emotional experiences (known as Alexithymia)v. This can present a challenge for clinicians when assessing depression or emotional distress in people with autism, who may have difficulty articulating the nature of their feelings and the specific circumstances these occur. Using visual aids to help the individual identify and label their emotions, and describe the situations where they occur, could be beneficial for some people with autism during assessment and treatment.
Our research group is currently exploring these issuesvi, and developing new measures and guidelines for assessing depression and suicide risk in adults with autism.
Preventing suicide in people with autism
What steps can be taken to reduce suicide risk in people with autism?
Awareness that many people with autism may experience suicidal thoughts and behaviours is the first step to prevention. Clinicians need to be alert to increased risk, and consider screening for mental health problems and suicidality in adults seeking an autism diagnosisvii. Also being aware of the fact that many people, and particularly adults, also experience delays in being diagnosed with autismviii, alongside lack of support post diagnosis for children and adultsix, and poor outcomesx such as health and social difficulties, social isolation, unemployment and underemployment in adults with autism. All of these factors could increase risk of secondary depression in people with autism, a key risk factor for suicidal thoughts and behavioursxi. We also know that strong post diagnostic supportxii improves mental health and quality of life of adults with autism. This means that the secondary depression and suicidality are preventable. Access not only to timely autism diagnosis, but appropriate support post diagnosis are therefore key to reducing suicide risk in people with autism.
To reduce suicide risk in people with autism, we need to prevent these people from ‘slipping through the net’, and not accessing appropriate timely diagnosis, and appropriate support.
i Segers, M and Rawana, J (2014). What Do We Know About Suicidality in Autism Spectrum Disorders? A Systematic Review. Autism Research. 7. p. 507-521
ii Dickerson Mayes, S, Gorman, A, Hillwig-Garcia, J and Syedet, E (2013). Suicide ideation and attempts in children with autism. Research in Autism Spectrum Disorders. 7(1). p. 109–119
iii Cassidy, S, Bradley, P, Robinson, J, Allison, C, McHugh, M and Baron-Cohen, S (July 2014). Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry 1(2). p. 142–147
iv Shtayermman, O (2007) Peer victimization in adolescents and young adults diagnosed with Asperger's syndrome: a link to depressive symptomatology, anxiety symptomatology and suicidal ideation. Issues in Comprehensive Pediatric Nursing, 30(3). p. 87-107
v Bird, G, Silani, G, Brindley, R, White, S, Frith, U and Singer, T, (2010). Empathic brain responses in insula are modulated by levels of alexithymia but not autism. Brain. 133 (5), 1515-1525
vi Coventry University. (2015) The forgotten half million: new measures to assess mental health outcomes in adults with autism
vii Russell, A J, Murphy, C M, Wilson, E, Gillan, N, Brown, C, Robertson, D M, Craig, M C, Deeley, Q, Zinkstok, J, Johnston, K, McAlonana, G M, Spain, D and Murphy D G M, (2015) The mental health of individuals referred for assessment of autism spectrum disorder in adulthood: A clinic report. Autism (Oct)
ix Crane, L, Chester J W, Goddard, L, Henry, L A and Hill, E (2015). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism (March)
x Howlin, P, Moss, P, Savage, S and Rutter, M (2013). Social outcomes in mid- to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. American Academy of Child and Adolescent Psychiatry 52 (6). p. 572–581
xi Cassidy, S, Bradley, P, Robinson, J, Allison, C, McHugh, M and Baron-Cohen, S (July 2014). Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry 1(2). p. 142–147
xii Renty, J O and Roeyers, H (2006) Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism 10 (5), p. 511-524
Date added: 9 November 2015