Being detained in an inpatient mental health unit can be a distressing experience for anyone. But if you are an undiagnosed neurodivergent teenager, it can be especially confusing and frightening.

Priya* was sectioned twice between the ages of 13 and 15, with four inpatient admissions. It was only on her fourth admission that she found out she was autistic.

She’s now in her mid-twenties and has kindly agreed to share her experiences as she wants to prevent similar things from happening to other young autistic people.

Content warning: This story eating disorders, self-harm and EUPD misdiagnosis, overmedication and suicide attempts.

*name changed to protect anonymity

I was first admitted to a psychiatric unit the winter before I turned 14. I had a dangerously low body weight, was regularly self-harming and had been making attempts on my own life. It got to the point where my parents couldn't cope. It was beyond their remit. I didn’t know this at the time, but my first stay ended up lasting for six months.

Back then, I didn’t know I was autistic. I wasn’t diagnosed until I was fifteen, on my fourth admission.

I remember having what I now know were meltdowns and reactions to the sensory environments or other patients having episodes. I would self-soothe with repetitive behaviours, but dangerous ones.

There was a time when the girl in the adjacent room was having an episode and needed to be restrained. Because it was so noisy, I took my duvet to the communal area to try to sleep on the sofa. They threatened to physically take me back to my room if I didn’t return. I was made to sit in my room and deal with the sensory overstimulation.

Once, I became so distraught I bit my favourite healthcare assistant. It’s not something I’ve ever done to anyone before or since. That's how distressed I was. It was just this horrible, overwhelming nightmare.

When I was sectioned, I was told that I could have three foods that I could say that I wouldn't eat. I have sensory issues around food so I’m a very fussy eater.

When I couldn’t comply, they threatened to give me a nasogastric tube. They thought I was disobeying them because of my eating disorder. Don’t get me wrong, I had eating disorder symptoms, but most of the time it was because eating certain foods made me feel sick. I had to have somebody right next to me, six times a day while I ate.

I was diagnosed with ADHD during my first admission. I don’t know how no one picked up on it before. I’m still on my meds now, and I wouldn’t function without them. It’s one of the few positives that came out of being in hospital.

At 14 and a half, they stuck me with the label of emerging EUPD [emotionally unstable personality disorder, also known as borderline personality disorder (BPD)]. It's a damning label. Many autistic women or people assigned female at birth are misdiagnosed with this, as autistic behaviours can be misinterpreted as EUPD ones. It went on my medical record and now it’s there, I can't get rid of it.

In my job as a primary care for the NHS, I hear colleagues say: 'That person's EUPD and you know you have to be careful around them. I meet some of them and I don't think that they are, I think that they're neurodivergent.

I was diagnosed with autism a few months before I turned 15. It was on my fourth admission. They must have thought to themselves: 'Why does she keep relapsing? What is going on here?' And someone must have made the connection.

If I had known I was autistic sooner, I wouldn't have necessarily needed to resort to something that gave me some sense of control. I would have understood more about who I was and why I didn't fit in with anyone, which led to bullying and all the stuff that paved the way for me to go into hospital.

I’ve wanted to work in mental health since I came out of hospital. I now work in community mental health and primary care. I'm quite fortunate, as I can use a lot of my lived experience to help people. I assess people with severe mental illness, support them, and connect them to resources within the community.

I think we need to support more people to speak up about their experiences in inpatient mental health units. In addition, more transparency about what really goes on behind closed doors.

Also holding clinicians accountable for the way that they approach and treat people. I've seen both personally and professionally that there is a lot of clinical arrogance. Because of their formal training, some people think they know better than someone who is living it and experiencing it.

I think part of the problem is when you use the medical model when you're thinking about things like autism, you miss things. You look at things through a very stereotyped lens and that's how people get missed, especially non-gender conforming people, people of colour, or those assigned female at birth.

I want to see more research into the proportion of individuals in inpatient settings who are neurodivergent or those who, like me, were given the EUPD label only to later find out they are autistic.

Research in this area needs to be done carefully, as you are dealing with a population who have gone through one of the worst things you can imagine. It’s important to work together with autistic people in research and pay them for their expertise.

I also want to see some more studies into what has helped autistic people in inpatient settings, to use this to educate and guide healthcare professionals so they can provide better treatment.

I was discharged once I reached the minimum ‘healthy’ BMI range. Over the year in total that I spent in hospital, I didn’t receive much in terms of effective treatment. There were small moments of clarity, but given how long I was there, it felt like so much of that time was wasted. Most of my recovery came after I was discharged, and from therapies I found myself, such as DBT.

It almost feels like my memories are separate from me like it happened to someone different to me. But it’s a part of me that I'll never escape from. But now I can use this experience to help other people.