New report suggests autistic people are at risk of dying prematurely

Today, autism research charity Autistica published a new report showing evidence that autistic people are more likely to die younger than the general population.

This is deeply distressing and worrying for the 700,000 autistic people in the UK, their families and loved ones. Our charity cannot, and will not, accept a world where autistic people are dying more than a decade earlier than the rest of the population. We wanted to give you more information about what the report shows and means.

Does this research apply to the UK?

The first thing to highlight is that this report is based on research carried out in Sweden. Our health and care system is very different from Sweden’s and so you cannot directly apply the findings to the UK.

However, we do not think that there is a reason to believe that the UK is very different – in fact, it could be worse.

That’s why it’s so crucial we know what the situation is in the UK. We want the Government and NHS to urgently investigate mortality in autistic people in our country; so we know what the situation is here and take any action needed to put things right.

What does the report show?

The research from Sweden shows that autistic people are at risk of dying younger from almost every cause of death. On average, this was 18 years earlier than the general population. For autistic people with a learning disability, this gap is bigger. The Swedish research showed autistic people with a learning disability dying on average 30 years before their time.

The report looks at what the main causes of death are. Again, this was different for autistic people who also have a learning disability, who are more likely to die early from epilepsy, and people without a learning disability, who are at greater risk of suicide.

This is incredibly worrying. We need to know more.

What do the report’s findings mean?

This report tells us about earlier deaths of autistic people living in Sweden. We don’t know what the picture in the UK is, but we think it could be similar. That would mean that autistic people are facing an unacceptable health inequality, which must be tackled.

We need an urgent review to tell us the reasons that autistic people are dying earlier than they should be. For example, we need to know if autistic people can access health services (e.g. visit their GP) and if health professionals know enough about autism to communicate with autistic people when they don’t feel well.

What do we want to happen next?

To improve the lives of autistic people in the UK, we need to know:

  • Are the findings of the Swedish research the same in the UK? 
  • Or are they better, or worse?
  • Why is this happening?
  • How can we reduce this unacceptable health inequality?

To know this, we need an urgent review, like there was in recent years for people with a learning disability.

The report also calls for more research into epilepsy and suicide – the two biggest causes of early death.

We support the recommendations in Autistica’s report and will call on the Government and the NHS in all the UK nations to take urgent action.

You can find out more information and sign Autistica’s petition for an urgent review on their website.

The NAS’ response to the report

In response to the publication of Autistica's report, Mark Lever, Chief Executive of The National Autistic Society, said:

"The 700,000 autistic people in the UK and their families will be deeply distressed by these findings. Our charity cannot, and will not, accept a world where autistic people are dying more than a decade earlier than the rest of the population.

“While this report is based on Swedish research, we have no reason to believe the situation would be that different here. Indeed, we fear it could be worse. The Government and national health authorities must urgently investigate what’s going on in this country and start to put things right.

“Autistic people and their families need reassurance from Government and the NHS that this is going to be taken seriously and action will be taken.”

I’m concerned about myself or someone on the autism spectrum, what should I do?

If you have concerns about your or someone else’s health, you should speak to your GP and make sure they know you, or the person you are worried about has autism. If you don’t think they understand enough about autism or communicating with you, you can refer them to resources on our website: http://www.autism.org.uk/professionals/health-workers/gp-info.aspx

If it’s an emergency, you should call 999.

For more in-depth advice, call our Autism Helpline on 0808 800 4104.