BBC News today published results of an investigation into the deaths of numerous young autistic people due to serious failings in their care. This is despite repeated warnings from coroners. These findings sadly echo research on early deaths that we highlighted in 2016.
The BBC looked at 4,000 Prevention of Future Death (PFD) notices delivered in England and Wales over the past 10 years. Their investigation found issues that were flagged a decade ago and are still being warned about now.
The BBC identified five key failings:
- A lack of trained staff with an understanding of autism
- Failure to treat autism and mental health problems as two separate conditions
- Shortage of specialised accommodation
- Lack of a health professional to co-ordinate the young person's care - as recommended in NICE guidelines
- Late diagnosis of autism
What we know about preventable deaths in autism
In 2016 we released a report highlighting the risks of early death for autistic people. Autism does not cause early death, but a number of avoidable factors do. The Swedish study that the report was based on found that autistic people died on average 16 years earlier than non-autistic people. Autistic adults with a learning disability were found to die more than 30 years before non-autistic people. The two leading causes of early death in this study were epilepsy and and suicide. There is strong research evidence that autistic people are at heightened risk of mental health problems such as depression and anxiety, neurological conditions, especially epilepsy, and other diseases including diabetes and heart disease.
But with early support or treatment, these deaths are avoidable, and autistic people can live happy, health and long lives.
We've known for many years that without effective support, autistic people are at risk of early death. This BBC research further confirms this. We need to see urgent action. That means a government-led plan for research to develop evidence-based solutions. Whether that's changing the way we diagnose and support autistic people, training staff or creating new personalised supports, we need to stop guessing autistic people's lives away.
Dr James Cusack, Chief Executive, Autistica
How things can change
We believe that research will provide us with the solutions that we need to drastically improve the health and wellbeing of autistic people.
- We want every autistic person to get an early diagnosis and effective support from day one
- We want every autistic adult to be offered an annual health check
- We want anxiety and mental health treatments tailored for autistic people
We have a number of projects focused on these aims, but we need action from government to make the major progress that is needed. We need urgent change now based on the evidence we have, and we need change in the future with research into better support and services for autistic people.