The forgotten half million: new measures to assess mental health outcomes in adults with autism


ESRC Future Research Leaders



Project lead

Dr Sarah Cassidy

Project objectives

1) to develop the first empirically validated measures to enable service providers to effectively assess depression and suicidality in adults with Autism Spectrum Conditions (ASC).

2) to develop novel inter-disciplinary approaches and big data to enable new areas of research understanding the complex pathways to depression and suicidality in ASC.

Research impact

Approximately 700,000 people in the UK have an Autism Spectrum Condition (ASC), most of whom are adults. A majority of the total economic cost of ASC to the UK is spent on supporting adults (£25 billion out of a total of £28 billion), with 36% of this cost attributable to lost employment opportunities. The individual and social costs of ASC in adulthood are also high, with recent research showing high rates of depression (32%), suicidal thoughts (66%) and suicidal behaviours (35%) in these individuals.

The latest reports from the ESRC Centre for Economic Performance, and the Chief Medical Officer, describe the high individual, social and economic costs of leaving mental health problems such as depression untreated. However, there are no valid measures of depression or suicide risk for adults with ASC, despite evidence that these are common problems. Measures for typically developing adults are not appropriate for adults with ASC, who tend to interpret questions literally, and have difficulty describing their emotional experiences. Depression and suicidality also manifest differently in ASC; inflexible thinking and impulsivity may increase risk. In addition to lack of appropriate measures, research progress is also hampered by the lack of a data set that includes enough adults with ASC to effectively evaluate their rates of depression and suicidality on a national scale; the UK adult psychiatric morbidity survey (2007) only included 19 adults with ASC.

The lack of research and appropriate measures have had a profoundly negative impact on adults with ASC; 1) it is not possible to conduct detailed research into the nature, risk or protective factors for depression or suicidality in adults with ASC; 2) it is not possible to effectively assess their depression or suicide risk in clinical practice; 3) without the knowledge base or assessment tools, new theories and effective evidence based treatments cannot be developed or evaluated; 4) we cannot effectively evaluate the prevalence of depression or suicidality on a national scale, in order to inform effective government policy. Hence, adults with ASC are not currently able to access evidence based assessment or therapies for depression or suicidality, despite being at potentially high risk.

This research project will address these fundamental issues by developing the first empirically validated measures of depression and suicidality for adults with ASC, for use in a national survey. This will form the first nationally representative dataset containing rates of depression and suicidality in adults with ASC in the UK, made available for secondary analysis. These objectives will be achieved by creating synergy between psychiatrists and clinicians involved in ageing, autism, suicide, mental health and risk assessment research, across internationally recognized institutions (Universities of Coventry, Newcastle, and Cambridge).

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