Across eight visits, Ash* has spent over four years of their life in inpatient mental health hospitals. They are sharing their story as part of our Break The Cycle campaign as they think there are multiple missed opportunities for improving experiences for autistic people stuck in inpatient mental health units.

*We have changed our storyteller’s name to Ash to protect their identity.

Ash’s story touches on mental health challenges, personality disorder misdiagnosis and eating disorders. Please read with care.

Over the past seven years, I’ve been in inpatient mental health services eight times. Well, eight is my best guess. I wasn’t sectioned every time, but over the years I’ve been sectioned by the police, and nurses and I have had inpatient stays of up to a year at a time.

I've never been a risk to anybody else. Often, it happens when I’ve been completely overwhelmed and unable to function. They call it self-neglect, but I wasn't trying to neglect myself. I just couldn't cope.

Clinicians flit between diagnosing me with one eating disorder and another. None really fit. They’ll say it’s ARFID (which is common in autistic people). When they diagnosed me with ARFID I asked, “Are you just saying that because I’m autistic?” and they basically said yes. I don’t think that they know what’s going on.

I think there's this myth that if you go into hospital you'll get treatment. In acute wards, they might have occupational therapists or a psychologist, but it's very hit and miss if you see them, or when you see them, or how much. It doesn't usually feel like there's a plan.

I think genuinely anybody would benefit from knowing appointments ahead of time, or a plan to stick to, but even more so if you are autistic. Because it probably impacts us more.

I feel like a lot of people don't understand how hostile a space can be. The hospitals were often bright, potentially flickering lights, the fridge buzzing. There's always loud conversations and you’ll hear someone slamming the clinic door. You can half overhear what's going on in the nurse's office even though you're not trying to. That's before one of the multiple alarms goes off.

There's a supermarket near my home that I won't go to because the lights are so horrible that I can't get through a whole shop. When I do go, I come out of that space feeling drained from the energy sapped just to get through the experience. It will wind me up, so I'm just not a nice person to be with. And the amount of time it takes me to calm myself down, it's just not worth it. So, I don't go there.

Now add to that experience being forced to be in that space twenty-four-seven with maybe 20 other people who are also having a horrible time and can behave unpredictably. The items that usually help you to make it quieter, calm down or distract you might be confiscated from you for weeks at a time. In a stripped room they take everything off you except sometimes your phone and sometimes you are allowed the clothes you are currently dressed in and sometimes you have to wear strongwear. This is the environment you're put in a mental health ‘crisis’. Thrive? I could barely survive.

Things that are illogical stress me out. On one of the wards, there were two doors between my room and the communal area. Some patients were often very loud and would usually be in the lounge.

One night, I got up and closed the doors between my room and the communal space. You can't lock them, but it just made it a lot quieter. I got shouted at for doing this. When I asked why they couldn’t be closed, nobody could give me a reason.

There was a lot of emphasis on if you are in your room, you're “isolating”. And that's seen as a bad thing. People can't control what happens in communal spaces. It's going to be volatile and unpredictable. Sometimes it's healthier for anybody to remove themselves from that space. Particularly if you get overwhelmed. That's taking sensible steps to effectively manage and regulate yourself, and it shouldn't be used against you.

It seems like if you’re on a female ward, anything you do gets written down as signs of a personality disorder. Personality disorders are often stigmatised, and it’s not uncommon for autistic people to be misdiagnosed with one.

It shouldn’t be the case, but some professionals start treating you differently (and not in a positive or helpful way). If parts of your experience didn’t fit the personality disorder narrative, it didn’t get written down, but many of my actions were interpreted as signs of one.

One psychiatrist actually apologised to me saying, "We've made assumptions, and they were wrong.” Those assumptions meant I was in hospital a lot longer than necessary.

A lot of autistic people have a strong sense of right and wrong. But in mental health services, if you challenge any rules or policy, it gets written down as problematic behaviour.

If you're severely restricting someone's life and asking them to conform, you should be able to justify why it needs to be like that. I don't think it's unreasonable for somebody to ask a question or interpret any kind of questioning of authority as “deliberately obstructive”.

I have probably spent five years in mental health units if you combine my visits. Only once have I had a care and treatment review.

If you're autistic and/or have a learning disability, you're meant to have a care and treatment review. They bring together all the stakeholders in your care and treatment, an independent professional and someone who is an expert by experience with relevant lived experience to you, such as being autistic.

It's a big meeting that includes reviewing whether your needs are being met, whether being in the hospital is the best option, and if not, what the other options are.

In my experience, nobody seems to know about care and treatment reviews, including a lot of the services that should be doing them.

I think it’s because it puts services under the spotlight and because quite often, it's somebody external challenging them and asking why things couldn’t have been done differently.

For me, mental health challenges aren't a thing of the past. Being sectioned is still a very current possibility for me. I understand that I can be a risk to myself but people have this idea that hospitals are a safe place. For me, they're not. I think it's genuinely better for me to not be in hospital as it can cause extra trauma.

I don't want other people to have the experiences that I've had. It feels almost like things are so bad that there feels like there's so much room for change.

And because little things could make such a difference then it feels like a useful place to put my energy. Each little change could make a big difference and there are so many ways that you can make these changes.

If sharing my story helps lead to fewer people stuck in the system or not getting detained for way longer than they needed to and ending up more traumatised, then it's worth a bit of me revisiting stuff I maybe wouldn't otherwise choose to.