Jackie was admitted to an inpatient mental health unit following the death of her father. The stressful environment of the wards caused her to have regular meltdowns, but staff didn't understand and without an autism diagnosis, her needs were ignored. She was stuck there for three years. She's shared her story as part of our Break the Cycle campaign, because she wants to see the system changed for the better.

Jackie's story includes references to eating disorders, suicide attempts and self-harm. Please read with care.


Knowing I was different

It was obvious that I was different, but nobody said that I was autistic. I had so many suicide attempts because I really didn't want to live anymore so they sectioned me for my own safety. I knew there was something wrong, but nobody was taking any notice. I kept thinking I had something physically wrong with me that was making me see the world differently. I thought I'd had a brain tumour or something. I was saying to people, “You need to scan my brain because there's something wrong. I don't fit in. My whole life has been wrong. I don't want to live anymore because it's getting too much for me.” At the time they labelled me as having a personality disorder. That seemed to be a broad title that most people got diagnosed with.

Constant meltdowns and consequences

When I was in the unit, every couple of weeks I was told “Oh, we'll see how you're getting on and you might be able to go next week”. This went on for three years. I could never keep my behaviour under control long enough to be let out. I had constant meltdowns. They tried to put me into therapies like DBT and CBT, but I couldn't understand a word that was going on. I couldn't concentrate. So, I ended up having meltdowns. And then if anybody got admitted to the ward or was discharged or if the staff changed, I couldn't cope. I experienced meltdown after meltdown. And every single meltdown had a consequence, usually getting my room stripped and all my stuff taken off me for two weeks at a time. As soon as I got it all back, I had another meltdown over something else, and it would all be taken away again. So, all my belongings spent about three years in a room locked up, away from me. And I'd have to ask if I wanted something, like a comb or deodorant. It was awful.

It really was hell. It's like being in prison. I’m not sure why I was finally let out. They probably only had enough money for three years or something like that. But in the end, they just built me up and built my confidence up a bit. When I first left, I had to have 24-hour care in my own house. I rented a flat and I had to have somebody there all the time. And that was just awful. They were so dictatorial to me and everything around me. They used to get everything out of my cupboard that I'd need that day. I’m perfectly capable of getting my own food or getting dressed. But they took control of me in my own house.

Finding out I was autistic at 56

A little after I came out, I went back to a day centre that I'd been going to before. A staff member said to me: “Did you ever get your assessment?” Confused, I asked, “What assessment?” And they said, “Oh, you were on the list ages ago for the autistic assessment.” And I told them I didn’t know about that. And they looked it up and they said, “Oh, no, you seem to have been missed off the list.” I was supposed to have been assessed for autism three or four years before, but they never assessed me. They kept missing me off the list.

To avoid waiting any longer, we went private. Mum paid for me to go to two different assessments. We wanted to go to three, so that we knew that it was definite. We only needed to go to two because both of them confirmed that I was. Before then I hadn't come across autism in women at all, not even when I was doing special needs work in school. It was all new to me. The more I read about it, the more I realised how it existed in women the more it made sense to me and my life.

The only person in the anorexia ward who wanted to eat

I had always had problems with eating, but I think my eating had gotten so crazily bad that they wanted to put me into an eating disorder unit. But that didn't work. I couldn't cope with it. They didn't know I was autistic then, but I couldn't cope with the environment at all. I couldn't cope with the other people around me, or when someone new came onto the ward. It was bizarre because I was the only one there who actually wanted to eat. My eating has always been about set habits: set times, set amounts and all that. And if I couldn't get particular foods or certain ways, I didn't have it at all. So, my weight plummeted in the end.

How to break the cycle

I think people in mental health units should be screened for autism and staff should be educated to watch out for signs of it. There's no harm in doing an assessment on everybody. I think they could do this in eating disorder units too. Because a large proportion of people in eating disorders units are autistic. It would be so much better if staff could be properly educated about autism and could talk to you differently and be a bit more on your side rather than against you all the time. Because I just felt they were against me and punishing me. And there's no point in punishing us. It wasn't going to get anywhere. I’d really like to see facilities in hospital to be more sensory aware too. That would make a big difference.

Better mental health in the future

I now have an emotional support puppy. She massively helps with my mental health. My GP has given me a letter to carry to say that she is my emotional support dog. She’s got a little uniform and everything. I also have a support worker. She's brilliant! She takes me out and about if I want to go to the shops. I see her twice a week. My GP's is really understanding, I don't have to go for appointments or anything, I can just email him when I need to. And I'm not on any medication anymore, so for me that’s quite good. Because I was on medication for years. So yeah. I'm okay, I'm doing alright. I have my anxiety days, and a bit of depression here and there, but I'm better than I was.

I hope research can help autistic people find better coping strategies for things like anxiety and depression. I have a lot of problems with anxiety, and I think that there should be more out there to help us cope with everyday life.