‘Becoming yourself, getting yourself back again, doesn’t start until you leave hospital’ ─ Lucy’s story and why she’s fighting for change
There’s no in-patient care for autistic people with mental health struggles. It’s all a mental health hospital with autistic people in it.
Lucy, who is autistic, was admitted to a mental health hospital as a teenager.
“When I was about 9 or 10, I started struggling with my mental health a lot more, things like panic attacks, a lot of anxiety, and that continued throughout my mid-childhood into teens.
“I started self-harming. It escalated to the point where mental health services felt that I should be in hospital. I was admitted through A&E to an adolescent psychiatric unit when I was 15. It was probably about an hour and a half away from where I lived at home, which felt like a long way.
“Every single choice you make to express yourself, to have your own identity, is gone. You’ve got no choices, no options. When you get there, everything you own is taken from you. It’s all locked away. You just have yourself, and the clothes you’re stood in at that moment.”
You stop being a person with their own identity and feelings. You’re room 7 or you’re room 2. You’re not Lucy.
Lucy has shared her story of being detained in a mental health hospital as part of our Use Your Power campaign. Photo credit: VoiceAbility/Neck of the Woods Films
“While I was in hospital, I got my autism diagnosis at 16. It was a bit like ‘oh, and she’s autistic’. It was like an add-on, which it isn’t. It isn’t something that can be separated from me.
“So, although there was awareness, there wasn’t the knowledge or the skill. Nothing changed between the care of an autistic and a non-autistic patient. It was all the same. And people aren’t the same.”
There are no units; there’s no in-patient care for autistic people with mental health struggles. It’s all a mental health hospital with autistic people in it.
Lucy, now in her 20s, reflects on how her ambitions were disrupted by her time in hospital, and how she’s been able to move forward with her life now she’s out in the community.
“I wanted to go to Cambridge. I was going to do GCSEs, I was going to do A-levels, I went into hospital in year 10, the year before I should have done those GCSEs, and I was in hospital for 8 months. I came out of hospital, and none of that was possible. All of those doors had closed.
“It’s not where I thought I would be, but I’m here, I’m working, I’m living here, and I’ve got a future that has choice and has freedom. It’s my choice where I go. I walk my dog, I’m outside, I’m in nature. And I fought for all of those things.”
Becoming yourself, getting yourself back again, doesn’t start until you leave. And you’ve got your family, friends, community, and a team of people who are fighting to keep you out and help you get well.
“Which is so different to being in that locked ward with a couple of hours a week of therapy and sitting and waiting. It’s not life.
“There’s no way forward until you’re in the community. You can’t build a life in hospital. You can’t build a life until you have choice, until you have power, until you have control over even the smallest things.”
How can you build a life when you can’t choose what clothes you’re going to wear?
Lucy explains what needs to change for people with a learning disability and autistic people, and why she’s sharing her story.
“The system doesn’t work. It’s not built to help autistic people and people with learning disabilities. It’s broken, fundamentally, bottom to top from things like the noise, the lights, and the environment, all the way up to the legislation and the Mental Health Act. It’s not helping the people who need help.
“The system is trying to fix people; it’s trying to make them better. But it doesn’t work for autistic people, doesn’t work for people with learning disabilities. There are parts of me being autistic in that environment, which to them is me needing to be fixed.”
To the system, this is wrong. Autistic is not wrong.
“Autistic people and people with learning disabilities should not be dying in these mental health units, should not be spending decades in these units. Until the system changes, people will continue to die.
“These units and hospitals, they’re being used as a place for autistic people and people with learning disabilities, when they might not have a mental health condition, they might just be autistic or have a learning disability.
“I can’t have hope there’ll be change until everyone knows and feels the loss, the anger, the pain of these people and their families.”
There can only be hope once there’s awareness. And that’s why I’m doing this.
Lucy was featured in a video to launch our Use Your Power campaign, which is calling on the government to urgently improve support for people with a learning disability and autistic people to live in the community and reduce their hospital detention.
Over 2,000 people with a learning disability and autistic people (of which around 200 are children) are currently detained in mental health hospitals in England. This is leading to lifelong trauma and loss of life.