Child and Adolescent Mental Health Services (CAMHS) in the UK have been failing Autistic children and young people for many years. When I think back to my own experience some 19 years ago, I am disturbed that things have not improved. Maybe they have even got worse. CAMHS failures resulted in multiple suicide attempts as a young adult, and very nearly claimed my life. Parents are pleading and begging with this service to support their children, and still they are met with indifference and gatekeeping. How many Autistic people are losing their lives? What can we do to tackle this problem?

How many children have died under CAMHS in the UK?

Since 2019, at least 20 patients aged 18 or under have died in NHS or privately-run units, the BBC has found.

A further 26 have died within a year of leaving units, amid claims of a lack of ongoing community support.

BBC Article (2022)

In the space of three years, at least 46 children were lost. That’s more than your average class size in the UK. Imagine for a second what we would be saying if an entire class of children died in the care of their school. It would be considered a national tragedy, and yet when CAMHS lose the same number of children they continue.

Now, remember for a second that Autistic children and young people are 28 times more likely to think about or attempt suicide (according to the Royal College of Psychiatrists). That same source says that Autistic people make up 11% of all suicides. That number is probably higher with undiagnosed Autistic people included. Of those 46 children who lost their lives, how many do you think were Autistic? Can you draw a line and say with confidence that Autistic people are not over-represented in the deaths of children under CAMHS?

Parenting should not be a battle to keep your child alive

When I was writing the CAMHS reports, it stood out to me how much families are being left to deal with crisis on their own. Parents who should be enjoying watching their children grow and learn are instead being left to safeguard their own children due to suicide risk. Those that are unable to cope anymore are referred to social services. The blame is placed on the family, rather than CAMHS who are failing to do their job. The family home should not be a makeshift hospital. Parents should not be forced to fill a role that they are neither qualified for, or wanted to ever fill. When CAMHS fail Autistic children, they break the spirit of entire families.

CAMHS are filling hospitals with Autistic people who shouldn’t be there

When CAMHS fail our children so severely, there are two significant outcomes that occur too frequently. Yes, children lose their lives, but they also find themselves institutionalised for extended periods of time. Having been an Autistic inpatient, I can assure you it is not a pleasant experience. 1 in 7 Autistic psychiatric inpatients were under-18 as of 2022. During a crisis in hospital spaces, should we not be pushing more resources towards community support? The failure of CAMHS to appropriately support Autistic young people is filling our hospitals with those who would never have needed to be there if they had been helped in a timely manner.

Studies have also shown that people are more likely to die by suicide after discharge from inpatient services. Autistic children are already more likely to think about or attempt suicide. Now we are increasing that risk through inappropriate outpatient support. Our Autistic children need help. They deserve to live. Why is this not plastered across our TV screens? Filling our newspapers? Why is the death of our future community happening so silently? People need to be talking about this.

What can we do to fix CAMHS?

There are some things we can work towards that will help improve this situation.

• Lobby our government to fund services appropriately.
• Push for training by Autistic people into Autistic experience.
• Make noise about this issue. Silence on this matter will only compound it and make it worse.
• Support legislation that empowers service users rather than silence them.
• Expand the availability of independent advocacy services.
• Let Autistic CAMHS service users be involved in the design and delivery of treatment policies.

Every life lost is a tragedy, and yet more keep dying. Every time a child ends up in a psychiatric unit, we are adding more trauma on top of trauma. We must not let this issue disappear silently into the night. Our Autistic young people are the future of our community. A community that saved my life. A community that I wish to be there for future generations.

I will keep sharing about CAMHS and making noise until we make the difference that I know we can.