3 years ago I had an autistic burnout, a combination of masking, sensory overload and, loss of regulation and lack of self-identity. I have masked since childhood as an attempt to avoid standing out and being picked on, and although I did find some friends I was able to unmask around, it was detrimental to my wellbeing and it shouldn’t be that children have to learn to hide themselves like me and many others had to. Masking feels like trying to play a piece of music that isn’t written for your instrument, and you can feel that it’s wrong but everyone else is telling you it’s the correct score. Looking back, there were so many sensory stimuli that bothered me, but I suppressed those feelings whilst unconsciously suppressing myself at the same time. At around 12, I began noticing things that weren’t quite right: my bedtime rituals (which I had had since the age of 5) were becoming much more time-consuming and distressing, I was getting frequent episodes of nausea and fatigue after coming home from school, and I had self-harmed for the first time with little clue as to why. I was looking at every diagnosis under the sun, but nothing fully resonated with me, so I assumed I must be overreacting.

Living with a neurotype that isn’t understood can take its toll on so many aspects of a person’s life, and when I was 14 my difficulties with food began. I had always been protected somewhat by having a stable routine of exercise with my football team and eating with my family, but I was entering my teenage years and a lot was changing so I decided to try and take more responsibility for my health. I was successfully stopping myself from going too far into one extreme (overweight), but I was completely naïve to the other end of the scale and ended up becoming very thin and malnourished very quickly. After an unsuccessful referral to CAMHS and my parents becoming more distraught about my physical health, my GP suggested that A&E might speed up the process. Turns out I was in a very dangerous physical state so I was told I would have to stay there for a while- I wouldn’t be discharged from hospitals for another 3 years.

The things I have experienced and want to talk about could fill a book and each deserve their own post, however I still wish to summarise what happened to me, even in the broadest terms:

I was diagnosed almost immediately with anorexia nervosa, despite my parents arguing it didn’t get to the root of the problem. Over 2 months, I was given one chance at home to eat and one brief admission to an adolescent MH unit 20 mins away, but since they were unsuccessful it was concluded the only option was to send me 100 miles away from home. I realised, when I saw the other girls, that I was different and didn’t struggle with eating like they did, so I masked and became obsessed with that identity as if it was my own. I wasn’t making much progress and the staff were unsure of what to make of me, so when I was diagnosed as autistic it became an excuse to why I wasn’t fitting with their treatment model. They began arguing this to my community team, who,  after hearing how ‘complex’ I presented, weren’t keen to have me either. I became the centre of this battle between hospital and community, where I was being told by the hospital that I would never get better there, whilst being told by my own community team that I wasn’t safe to live at home. All the while, I was still an inpatient and was gradually losing the will to live. My parents were the only ones who never gave up, and they fought hard to get whatever home leave they could and get me involved in life outside of hospital. My mum had immersed herself fully into researching autism and discovered there was a lot more to autistic people than is mentioned on the DSM-V. I began to understand my neurodivergence and I grew away from the identity I had created in order to survive in the environment. I was viewed as less of a risk and allowed more time alone, which I used to unpick what I had become. A few months later and I was discharged and back with my family.

For almost all of my hospital admission, I was sectioned, lived with an NG tube and was mostly restrained to be fed. It was the same routine every time, but apparently the staff couldn’t help with that or make any changes to the environment, so it was down to me. I became completely dehumanised and treated as a process, having people shout at me and a few finding my behaviour amusing. It didn’t matter that I had nutritional liquid on my clothes and in my hair, or that I was constantly nauseous, fatigued and bloated from my feeds, because I wouldn’t have to go through them if I just ate. Even my frequent episodes of vomiting were interpreted as self-induced and I was made to clean it up afterwards. My intolerance to the feeding regime led me to lose a fair amount of weight, however this wasn’t restored as the hospital said that my levels of distress if they changed the feed would be too much for their staff, so I stayed underweight for a large part of my time there.

Hospitals are sensory hell, the unit I went to being a constant nightmare of shoddy lighting, alarms, screaming, and crying, artificial inconsistent heating, and the TV being used as background noise. I would have shutdowns and meltdowns, but these weren’t understood and my behaviour was attributed to autism, not the environment. I got into routines of self-harm, but after a while people stopped talking to me about it or trying to change it because they presumed it was something I did to soothe myself…because I was autistic. The things I actually did do to soothe myself, such as shaking my legs, weren’t allowed since it was seen as a way to burn calories. I was put on medication and given it against my will, which made me even more upset, which they used as a reason to increase the dosage more. I was placed under a service specifically for autism, which turned out to be based on behaviour modification with no intention of acknowledging my autistic identity, and social services as a ‘child in need’ when all I needed was my family and home. I had no privacy which probably impacted my mental health the most, however I am still viewed by services as having had ‘anorexia with autism’.

When I was discharged from hospital, it felt like I was being praised for this incredible journey I had been on, constantly being told how ‘resilient’ and ‘clever’ I am and how I’m going to accomplish amazing things in my life. I don’t know how genuine these comments were, thinking back to their shock when I told them I wanted to start eating again, but nevertheless, I was given no warning on how hard it would be to adjust after years of institutionalisation. I’m constantly on edge and things that used to bother me slightly now provoke panic. I’ve been living such an artificial life for so long that has sheltered me from everyday occurrences, and my gut has been permanently damaged from my ordeal so that any stress will be instantly noticeable in my stomach. I’ve had to lay off certain food groups after realising I’ve gained a fair few intolerances, and I’ve still not restarted menstruation due to the constant stress and being kept at a low weight for a very long time.

Trauma from hospital admissions is something that services don’t like to acknowledge because it highlights a flaw in their system, so it may be quickly brushed over or attributed to another diagnosis. Placing all the blame in the person can protect the mental health trusts, sure, but it isn’t very nice for the individual. Although I am obviously so glad to be home and feel so lucky that I’m out of hospital, I was traumatised, not treated, and I want to raise awareness to help people who are in a similar situation to myself. ~Josie