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Jon Spiers, Autistica’s chief executive

“Many autistic people will never see their 40th birthday”

Photo and quote from Autistica’s founder Dame Stephanie Shirley, who lost her autistic son with epilepsy and now fronts the campaign.

 

According to the report “Personal Tragedies, Public crisis”, published in March 2016 by autism charity Autistica, there is a mortality crisis in autism. Autism-Europe spoke with Jon Spiers, Chief Executive of Autistica, to discover why autistic people die on average 16 years earlier than the neurotypical population.

Autism-Europe: Could you say a few words about the importance of these findings for the autism community?

Jon Spiers: Our research confirms the true scale of the hidden mortality crisis in autism. Autistica’s report, “Personal Tragedies, Public crisis”, followed recent findings from a very large Swedish study on early death in autism (carried out by researchers from the Sweden’s Karolinska Institutet and funded by Stockholm County Council, Karolinska Institutet and the Swedish Research Council) with what we already knew about the poor health outcomes of autistic people in the UK and around the world.

The data is stark: autistic people die on average 16 years earlier than the typical population, with those who also have a learning disability dying more than 30 years younger than the norm (…). I hope that by bringing this information to their attention in this report, we can all work together to be aware of the risks, and to pressure government, funders, industry and health services to tackle the issue.

AE: Does the study show that people with autism will definitely have  a shortened life?

JS: The figures we have are all at population level and are indications of risk. Many autistic people will live long lives but it is clear that this is not the case for many others. The Swedish study was very large, of high quality and is corroborated by multiple smaller studies from around the world, so the evidence base is strong.

The facts

Autistic people die on average 16 years earlier than the general population

Autistic adults with a learning disability are 40 times more likely to die prematurely due to a neurological condition, with epilepsy being the leading cause of death.

People with autism were 7.55 times more likely to commit suicide.

Autistic adults without a learning disability are 9 times more likely to commit suicide

Autistic people requiring high levels of support on average passed away before they reached 40, at 39.52 years.

AE: Do we have a good enough understanding of what causes the increased chances of death for people with autism? Taking into account that we do not know exactly what causes autism, it is harder to see what the possible causes could be.

JS: We know that the three leading drivers of early death in autism are epilepsy, suicide and heart disease but we do not yet know why they are so common and whether they are different in autistic people. We also know that autistic people are at heightened risk of dying younger from virtually every cause of death. Because of the breadth of the autism spectrum and of the range of co-occurring conditions that autistic people experience, research is challenging. But understanding the links between these conditions could help us learn a lot more about what autism is, and importantly how we can support individuals and their families to address the difficulties that most affect their everyday lives.

Epilepsy, which commonly co-exists with autism and affects up to 40 per cent of autistic people, is a potential factor in reduced longevity. Experts also point to bullying, social issues and side effects from medication as contributing factors.

AE: Research indicates that 70 per cent of autistic individuals have a mental health issue such as anxiety or depression, and 40 per cent have at least two mental health issues. Is there any effective tailored mental health treatment or related service for meeting the needs of people with autism?

JS: There are some examples of good practice in mental health services, but we know that autistic people’s needs are often very poorly met. There has been very little research into mental health in autism, in both basic and applied science. As a consequence, we do not know why people with autism are at such increased risk of mental health problems and suicide, although research suggests biological and social factors may play a role in the link between autism and poor mental health. It is likely that environmental factors also play a part, such as lack of employment, social exclusion, bullying, and experiencing stigma.

AE: What can autistic people, their families and society do to avoid these risks?

JS: Awareness and preparedness are key. Being aware of the greatest risks of early death is important: recognising early signs of epilepsy, anxiety and depression and seeking support as early as possible. Knowing that these may present themselves differently in those with autism is key for families, care providers and healthcare professionals.

Society also needs to become more accepting of the differences in autistic people to give them the greatest chance to work, and build relationships, both of which will help dramatically with their mental health. Ultimately, we need more research to understand how we can best diagnose and support those most at risk of early death and use this knowledge to inform policy makers and service providers.

AE: Do you know if there are any policies, strategies or examples of good practice already in place (in Europe or elsewhere) to tackle this specific problem of premature death among people with autism or with any other brain condition?

JS: There is little existing good practice specifically aimed at reducing mortality in autism, in part because the sheer scale of the crisis has only recently been revealed. Autistica is leading the way in lobbying for change in this area, to make health outcomes for autistic people an international priority. Efforts have been made in other fields such as learning disability and severe mental illness which could be rapidly assessed and retooled for use in autism.

AE: Based on the results of the study, what are your recommendations?

JS: We need to raise awareness of this hidden crisis among policymakers and healthcare providers, sparking local, regional, national and international responses.

We need to ensure information and services aimed at treating the conditions with the highest mortality risk are autism-appropriate and can actively reduce premature mortality in autism. To do this, we need to rapidly build on our research in this area and develop evidence-based policies, support services and treatment to urgently reduce premature mortality.

Click here to download the publication “Personal tragedies, public crisis”