I am autistic. I didn’t know I was autistic until I was almost 17. This played a major part in my descent into mental health crisis.
When I was 16, I was sectioned.
I was admitted to hospital informally at first. They told me that it would only be for a few weeks and that I could leave whenever I wanted to. Three weeks after I was admitted, I asked to be discharged and by the end of that day I was sectioned. I was there for three and a half months.
I wouldn’t have been sectioned if I wasn’t autistic
It might sound funny, but ultimately, I was sectioned because of my diary.
Autistic people can have very intense special interests. Our brains hyper-fixate on certain things which comfort us. When I was admitted to the unit, I became obsessed with writing in my diary. I wrote absolutely everything down that happened. I spent hours and hours writing every-day. I carried it around everywhere with me. It made feel safe and helped to block out the overwhelming chaos around me.
Then, three weeks into my admission, they took it off me. This was because it had a ring binder on it, which was a prohibited item, but they hadn’t told me this before and they had allowed it for the three weeks prior to suddenly deciding it needed to be taken away. I was hysterical that they took it off me. I had a six-hour meltdown. I called my mum screaming and crying. I begged her to come and take me home. I had incident after incident because I was so distressed. I demanded to be discharged. By the end of the day, I was sectioned.
The staff couldn’t understand why I was so upset. They labelled my behaviour as histrionic and dramatic. Nobody recognised that my distress was because I was autistic and because I wasn’t being understood.
Being autistic in a mental health hospital made it hard for me to recover
It was very hard for me to recover in the hospital environment. It was chaotic. It was loud. It was disorganised. I couldn’t engage with my special interests. I hated being watched constantly by strangers. At night I was on one-to-one, which meant having someone watch me while I slept. This was nearly always a male agency staff I had never met before. I hated this. I felt anxious all the time. I didn’t want to join in with the group activities when I felt anxious, but I had to because otherwise I was told I wasn’t complying with my treatment plan. There was a time when I was so distressed, I was physically dragged by my shoulders by two staff members to my room. It hurt.
The sensory environment exhausted me, but we weren’t allowed in our rooms during the day. It would have really helped me to have had time out to re-charge in a quiet space. I had meltdowns every time someone had to check my things or my room. I hated people touching my stuff. I hated people touching me too, but they had to whenever I got back from leave, to make sure I wasn’t hiding any prohibited items. This made me dread going on leave, because the anxiety of returning to the unit was too much. It was easier when staff I knew and trusted checked my things, but they said that this encouraged dependency on certain staff members. I often felt like they wouldn’t allow things which would have made it easier for me.
What helped me
I know that I wasn’t safe when I was admitted. All I wanted was to die. My head was in such a dark place that I couldn’t see a way out. The hospital did keep me safe. Some of the staff were amazing – they really cared, they spent time with me, and helped me work on my goals. It helped massively meeting other young people experiencing similar things to me. It helped me not feel so alone. It meant that I had the support I needed when I was discharged, but it shouldn’t have taken me needing to be sectioned before I received the help I needed.
I was very angry at the time. I was angry that I’d been asking for help since I was 13 and the system had constantly denied it to me. I was angry that I was sectioned and that I felt misunderstood. When I was diagnosed with autism, several months after leaving the unit, I was angry that the staff there hadn’t recognised it. I was angry that I had gone nearly 17 years of my life feeling misunderstood, overwhelmed, confused and lost, without knowing why.
I’m still working through a lot of that anger now. I am so grateful for the kind and caring nurses and healthcare workers who sat with me at my darkest time and tried to make me see that I had a future.
Looking back, all I wish is that my autism had been recognised and understood.
I wish that I didn’t have this lingering anger and trauma from being sectioned. I know I can’t change the past, but I hope I can change the future, to make future experiences better for autistic people.
The Mental Health Act White Paper
The Mental Health Act 1983 is a piece of legislation in England and Wales setting out when and how people can be detained (“held under section” or “sectioned”) and hospitalised for mental health treatment, even if it is against their wishes.
In 2017, an independent review of the Mental Health Act was announced, intending to address concerns about the rising number of detentions and disproportionate number of people from racialised communities being detained under the Act. It concluded in 2018 and you can read the report here.
In January 2021 the government released a White Paper on the Mental Health Act, setting out their proposals for future legislation based on recommendations made in the review. It is now open to a public, online consultation until the 21st April. You can read NSUN’s initial response here. After the consultation closes, final policy decisions will be made and a revised Bill will be released, “when Parliamentary time allows”.
The consultation is in the form of a long survey, and it is worth noting that you do not need to answer all of the questions. Depending on how much you know about the Act, it might be helpful to read more about the Act before you respond – for example, you can read Rethink Mental Illness’ resource on the Mental Health Act or their page on responding to the consultation here.
You can also watch NSUN’s Q&A webinar on the Mental Health Act White Paper.
Emily talks about how, as an autistic person, detention under the Mental Health Act can be traumatic.
The White Paper proposes to “reduce reliance on inpatient services for people with a learning disability and autistic people and to further ensure the availability of community alternatives”, stating that there will be new duties on Local Authorities and Clinical Commissioning Groups to ensure an adequate supply of community services. At NSUN we are still formulating our response, but we have concerns that the proposed changes in this area might have unintended consequences, decrease safeguards and not stop people being detained in ATUs.