What is it like to need mental health services when you’re Autistic?
According to statistics, 70% of Autistic people have a mental health condition. This is deeply concerning compared to the 25% of the general population that will experience a mental health problem in a given year. Autistic people are also much more likely to die by suicide with current statistics suggesting that the National Autistic Society assert that there is an increased risk of suicide mortality with the Royal College of Psychiatrists suggesting we are nine times more likely to die in such circumstances.
Given these deeply concerning statistics, the causes of which you could author several books on (I know because I wrote some of them), it is no surprise that Autistic people often find themselves in contact with wellbeing and mental health services. Personally, I have been under the care of secondary mental health services (CAMHS as a child and ATS as an adult) for over half of my life.
Both services had their failings, and CAMHS has been in crisis seemingly since it’s formation.
The first thing you need to understand about specialist mental health services in the UK is that they don’t really use a prevention model for intervention. Instead, they use a crisis-driven intervention model that only begins work with you when you are deeply suffering. This was particularly problematic for me as a drug addict; I was perpetually in crisis, but the wrong sort of crisis for professionals to take me seriously.
In my early twenties, I was under the care of a Substance Misuse Service alongside my mental health support. This was remarkable to be between. Like many others, I found that services were never quite sure who should take the lead. It became a self-sustaining cycle of “treat the mental health issues to fix the addiction, fix the addiction to address the mental health issues”. I have witnessed many of my peers fall between the cracks and disappear because of the back and forth of treatment and support.
What has always been quite remarkable for me is the complete lack of understanding of autism in just about every person who said they were prepared to work with an Autistic “service user”. Professionals were often unable to understand my experience, even with the best of intentions behind them. It complicated the feelings of alienation and isolation.
Therapy was always a tricky affair. More or less every single therapy I was offered was based in behavioural methods such as Cognitive Behavioural Therapy (CBT); despite it’s widely known lack of efficacy in the Autistic community. At best, therapy has been moderately helpful, and I have benefited from being able to just talk about the horrible things that have happened to me.
From a more practical standpoint, trying to engage with services has been deeply problematic. I am Schizophrenic. I need to engage, but as an Autistic person, I need predictability and accountability. Professionals are often spotty in their communication, disappearing for weeks at a time, not fulfilling appointment I have made, or being late. This has made engagement quite an upsetting process for me.
While I am “treatment-compliant” I have also found that my medication gets fiddled and altered very regularly. The problem with psychiatry is that it’s so inexact that it barely seems like a branch of medicine at times. Side-effects and constant worry of change sometimes make you feel less willing to engage. I am no exception. Sometimes I have to wonder what’s the point?
Services feel very impersonal. It seems that case-loads for those coordinating our care are so high that we’re lucky that they even remember our names at times. As a person under these services, it is very evident to me just how much they have been defunded by the people in charge. I have to wonder if there would be as many issues if the government appropriately resourced the mental health sector.
There is a point to this. It’s May. Mental Health Awareness Month. Now is the time (apparently) to open up. Autistic people deserve adequate care for their mental health and are not receiving it. Most of us either go private, or accept that things will never be quite as smooth sailing as they could have been. If you’re going to raise awareness of anything this month, think about the Autistic people who are being shortchanged by a service that could very well save their life.
For more of David’s writing, please consider purchasing a subscription to David’s Divergent Discussions.
Don’t forget to head over to the CAMHS resource page and sign the petition to get proper support for Autistic children.