Dr. Sarah Cassidy has been working to raise awareness of early death in autism, and lobbying parliament to tackle this hidden crisis.
The findings of the report and recommendations for action were presented by Sarah at a press conference and policy briefing held at Westminster on the 17th March 2016.
The key findings of the report were:
- Autistic people die on average 18 years earlier than the general population. They are at increased risk of early mortality for virtually every single cause of death.
- Those with autism and learning disabilities die more than thirty years earlier, with an average age of death of just 39 – epilepsy is their leading cause of death.
- Those with autism and no intellectual disability die 12 years younger, with suicide a very significant cause of death.
The reports findings were based on a large-scale research study in Sweden, led by Dr Tatja Hirvikoski at the Karolinska Institute in Stockholm. They studied the national health records of 25,000 autistic people matched with 2.5 million non-autistic controls – a huge sample.
The results from this study reflect findings from Sarah’s research. She found that 66% of 374 adults diagnosed with Asperger Syndrome (a high functioning subgroup on the autism spectrum) had contemplated suicide, 35% had planned or attempted suicide, and 32% had depression.
These two large high quality studies also suggest that suicide is different in autism compared to the general population. This means that tailored intervention programs are likely needed to effectively tackle suicide in autism.
In particular, the Swedish study found some evidence that high functioning women with autism may be at most risk of suicide. However, in the UK general population, a majority of suicides are by men. Programs designed to prevent suicide in the general population therefore tend to target men, encouraging them to seek support for suicidal feelings. This is unlikely to be effective in tackling suicide in autistic people, where autistic women could be most at risk.
The reasons autistic women may be at particularly high risk of suicide may also be very different to general population men. Sarah’s research showed that people diagnosed with Asperger Syndrome in adulthood, at an average of 31.5 years old, showed the highest rate of suicidal thoughts than any other study (66%). These results suggest that difficulty in obtaining a diagnosis of autism may increase risk of experiencing suicidal feelings. Difficulty in obtaining a diagnosis may particularly affect autistic women, as many diagnostic instruments for autism were developed for men with autism. This could potentially explain why high functioning autistic women are at particular risk of suicide. However, further research is needed to explore this possibility.
Another unique feature of suicide in autism, is that many autistic individuals who contemplate suicide are not diagnosed with depression. Sarah’s research found that only half of adults with Asperger Syndrome who contemplated suicide were depressed. However, 85% of those in the general population who die by suicide have a diagnosis of depression. This suggests that mental health problems could be under-diagnosed in autistic people. This could be due to difficulty in describing internal emotional experiences in people with autism (termed Alexythymia). Anecdotally, autistic people also report having difficulty getting access to diagnosis and support for mental health problems. Undiagnosed mental health problems and lack of access to appropriate treatment could also increase risk of suicide in autistic people. However, again research is needed to explore this possibility.
Recent research has shown that delays in diagnosis, and lack of support post diagnosis lead to poorer outcomes such as mental health problems, increased use of hospitals and lower quality of life. Another potential tragic and entirely preventable outcome of this is early death through suicide. Further research is desperately needed to explore the complex risk and protective factors for suicide in autism, and improve access to appropriate assessment and support for mental health and suicidal feelings for autistic people.
Sarah is currently leading a 3-year research project (MHAutism) funded by the Economic and Social Research Council (ESRC), which aims to develop appropriate tools to effectively assess depression and suicide risk in autistic adults. This will allow service providers to identify mental health problems and suicide risk in autistic people, and increase their access to appropriate support and treatment for these difficulties.
If you have been affected by any of the issues raised in this article, please consider contacting the following support charities:
The National Autistic Society, UK: 0808 800 4104
CALM, UK: 0800 58 58 58 (Nationwide) 0808 802 58 58 (London)
MIND, UK: 0300 123 3393