On Being Autistic and in Mental Health Crisis Care

Introduction

Ihave known that I am autistic for only the last decade of my life, however, I have known of my crippling anxiety and fluctuating moods for much longer. Indeed, it was these difficulties that brought me to the attention of the professionals who would assess me and tell me I was autistic. I am not alone in my late diagnosis. Autistic women appear to be more likely to receive a diagnosis later, and this is more likely to come after diagnoses with other mental health diagnoses than it is for autistic men.¹ Regardless of gender, coexisting mental health problems in autistic adults are alarmingly higher than they are for nonautistic people,² as is the risk of suicidal behaviors too.³

I have been in and out of mental health services since I was 16 years, often feeling like a rectangular peg trying to fit into the circular, one-size-fits-all, hole that the NHS mental health services offer. However, although these were often unable to adjust to my needs, it is fair to say I would not be alive today without the support they did offer, particularly in times of crisis. But how much easier and more effective could they have been had they been able to adapt to my autistic needs? How much quicker would I have recovered? How much less likely would I have been to relapse? And crucially, how much less fear would I have had to carry at the thought of needing to reach out and ask for help again?

This piece explores my experiences of acute mental health crisis care, with a particular focus on my most recent acute hospital admission. I have written this piece not to evoke fear in others seeking help, but rather to raise awareness and prompt the action of those who have the power to advocate and make changes to the current system.

A Slippery Slope to Crisis

It is never just one thing that makes me slide into crisis, it is often the accumulation of many relatively minor changes and stressors. Initially I find myself entering a hypomanic state (a milder version of mania) to cope, where I take on new tasks and make new plans with a ferocious energy that seems to come from nowhere. Eventually the lack of sleep and the racing thoughts begin to turn sour, until I notice that I am completely numb. This is followed by a deep constant pain and feelings of despair and hopelessness. It is at this point I know I need urgent help and I am no longer able, or sometimes willing, to keep myself safe.

My most recent crisis did not seem to be budging, and I felt like I had tried almost everything that had previously helped before (a medication increase, therapy, and increased intervention from my Community Mental Health Team). It was a depression all too familiar, yet still felt like the first time I had ever experienced it. When my care coordinator, who is the mental health professional who oversees my care within the Community Mental Health Team, suggested I be referred to the Crisis Home Treatment Team, I was extremely reluctant. The UK's NHS offers a short-term intensive service, providing home treatment to support patients in crisis who would otherwise need to be admitted to hospital.

I usually avoid these Crisis Home Treatment Teams like the plague, fearful of how uncertain they can be, with new people coming to your home or calling you unannounced each day. For the short period of time you are with them (usually around 2 weeks), you are under their care and, therefore, cannot continue your usual appointments with the community team you have come to know so well. In a time of a crisis I find this especially unsettling, especially as Crisis Home Treatment Teams are usually quite large teams and you are never guaranteed to see or speak to someone you have met already.

During my last referral several months prior, it had taken me weeks to agree that I needed more intense daily support, which my Community Mental Health Team could not provide. My care coordinator had made the referral and I then waited to hear from them the next day. I waited and waited, lying in bed all day, unable to get on with my day until I knew when they would be arriving at my home to assess me, nervous at having to accept strangers into my home and tell them how I was feeling, something I find difficult to do even to those most close to me.

Finally, in the middle of the afternoon they called to say they were 5 minutes away, and in a panicked rush, I had gotten myself out of bed and awaited the knock on the door. Two people from the team arrived to assess me, however, the conversation had lasted little more than 10 minutes, and at no point did they enquire about how safe I currently felt or whether I wanted their support. They concluded that I should be referred back to my Community Mental Health Team and then left so swiftly I was not able to ask any further questions.

I immediately went into a meltdown, distressed that I did not feel I had been heard and feeling rejected from the help I had agreed I currently needed. My mental health continued to spiral and my hopeless despair grew, until eventually both my partner and my care coordinator felt I needed to be in hospital for my own safety.

However, the Crisis Home Treatment Team act as gatekeepers to inpatient hospital admissions, and so I found myself again being assessed by their team, although this time a little more thoroughly. I was put forward for a bed as a voluntary patient and sent home to wait until one was available. No one could tell me how long this would be, and given the bed shortage in the United Kingdom,⁴ I was warned it could be as long as a week, if one became available at all. The days waiting felt like the longest and most uncertain I had ever experienced.

I would have daily contact with the Crisis Home Treatment Team until a bed was found, which could have been anywhere in the United Kingdom. I found myself unable to function day to day, mostly lying in bed becoming more and more hopeless and depressed. I would feebly put some things together in a pile ready to pack that I would take with me, but the longer I waited the more I talked myself out of needing to go at all, and I found the courage I initially had when I agreed to the referral starting to wane.

Confronting Reality in the Ward

A bed did become available 4 days later, 30 minutes from our home on a 16-bed assessment unit. So I found myself at 7.15 pm on a Tuesday evening sitting in a stuffy family room, filled with gaudy wipe cleanable furniture, waiting for a member of staff to become available to admit me. There was shouting, not only coming from the agitated patients inside, but also from the staff as they left for the end of their shifts squabbling with each other. This was my first admission, and I did not know what to expect. I had warded off this day for long enough, afraid of what the environment would do to my sensory sensitivities and social anxiety, but it was clear that the risk to myself far outweighed my autistic need for sameness and routine.

I was scared and about to do the hardest thing I had ever done, leave my routine, family, friends, cats, job, and house to stay in an unfamiliar locked ward. I was not expecting the pleasantries and welcoming of a concierge checking me into a four star hotel, but neither was I expecting to be stripped of my belongings so suddenly, having my laces and belts ripped out of my clothes, with just a few harsh works barked at me to “stand there,” “spread your legs,” and “spread your arms” by the nurse and security man who had fetched me.

Eventually I was led to my room, which was surprisingly large despite only bearing a single bed attached to the floor and one chair. The bed had a blue plastic mattress covered in a thin white sheet. Over the next 10 days, I would regularly find myself waking up stuck to the mattress due to the constant heat coming from the radiator, which was set to the main hospital's thermostat and could not be turned down or off. There were windows but not to the outside world. They led into the rectangular concrete yard that sat in the middle of the building, and by turning a knob I was able to slide back the inner glass between two mesh panes.

I found they let in very little air but every single sound, magnified, from those chatting and playing music loudly in the yard and from conversations that echoed throughout the corridors. I had to decide between satisfying my heat sensitivities or my noise sensitivities, and neither particularly well. Once I was left alone, I stood at my meshed window and cried. How had I gotten here? How would I get out?

I had prepared as much as I could for this admission in the lead up; I had needed to know everything about “ward life” and what I could expect, and so had researched online others' experiences, a helpful advice page on voluntary admissions from the UK's leading mental health charity, Mind,⁵ and had also been given as much information as my care coordinator could find. However, none of it ended up being what I actually experienced. Many of the possessions I had packed to help me through my stay had been confiscated, including my sketchbook and pens, and the little possessions I did have left were sat forlornly on the floor. I was left with only my clothes, with waistband cords removed, a few of the toiletries I had brought, with all sharp objects removed, and my book.

I was allowed to keep my phone but the charging cable, despite it only reaching 15 cm in length, was taken along with my vape, and placed in a locker that I could only access through the security guard and use while being monitored. I found myself stuck in my room with no idea where anything was, how the ward worked, when I would see a doctor, or what exactly I was supposed to do. People would pop in to do my observations and check on me, briefly introducing themselves, but with so many faces I barely remembered a single name. The visiting rights, opportunities for leave, and phone charging cable I had been told I would have as a voluntary patient now appeared to be just a fantasy, I was on an assessment ward where all patients were treated with the same high-risk caution.

Nothing was predictable and yet there did exist a monotonous and basic routine that got me through the days and which, looking back on, I miss. Without this I am uncertain I would have made it through the noisy and chaotic experience intact. Staff handovers at 6.30 am were loud and insensitive to the patients' need for calm. Pots of pills were regularly handed to patients with no explanation as to what they were. At one point in a state of panic, I found myself running round the ward trying to find someone who could tell me exactly what the yellow pill I had just taken was. Sedation appeared to be the sole source of treatment here. I found myself having more meltdowns than I usually would at home, and on much larger scales.

The first one, the result of them not giving me my prescribed medicines on time (or at all the night before), was swiftly dealt with thanks to two more of the sedating blue pills. My next meltdown was met with confusion and surprise by the nurses. “Why are you crying?” They asked repeatedly as I banged my head against the wall, before handing me two of the even more sedating yellow pills. The next meltdown I refused the pills, insisting I was having an autistic meltdown and just needed someone to talk to and help me process the overwhelming feelings I was having. No one ever returned to talk to me. At one point my partner drove up to sit with me on the opposite side of the meshed window in the lounge, where she patiently waited as I sobbed. The other patients obliviously continued to watch their TV program in the background.

Initially, my biggest fear of entering hospital had been the social interactions I would have to have with the other patients, but it turned out that this was the hospital's greatest benefit. Because I was a smoker, I found myself frequently taking any opportunity I could to sit in the yard with my vape (smoking was not permitted). The other patients would introduce themselves to me and gradually we began to talk. We mostly shared our experiences of why we were in hospital and I found common ground with almost everyone I spoke to. Some shared very similar experiences to my own and were also “first timers” on the ward, having voluntarily admitted themselves after specific crises in their lives, others had been there a long time involuntarily due to serious mental illness.

Predictably the hospital food was rubbish, and so every day we would excitedly plan and place our take away food orders together. More and more I found myself stopping to talk to the other patients, we would check in on each other and provide comfort and support when one of us was having a particularly difficult day. It was clear that I was not the only one struggling with the chaotic and unpredictable environment, although being autistic did add extra layers of difficulty.

Although helpful at times I also found the constant social environment overwhelming and regularly needed to take myself off to be alone. I refrained from using the patient lounge or joining in with their film and TV nights or loud karaoke sessions because I so desperately needed to have my own space to process everything going on around me. I likened the experience to the first week of university, Fresher's Week, where the social demands are high as you are forced into joining new groups of people and activities.

However, by the end I found myself sad to leave the other patients I had come to know so well and who had supported me when no staff members had been available. It is the only place I have ever felt so free to truly be myself and express my true feelings, without judgement and with a great deal of compassion from others. It was normal to cry and show our distress; to not do so, given the reasons we had been admitted, would have been weird in itself.

The Transition Home

The other patients and I all waited with uncertainty on the days we were told our doctors were in. Owing to my increased intolerance to uncertainty, this wait would often fill me with nervous dread. Staff avoided telling us exactly what time we would be seen so we would not get distressed if it was delayed or cancelled. In most of these medical reviews, the plans were unclear, in fact, my discharge came rather suddenly. Ironically, despite being desperate to leave, I wished they had given me a couple of days to adjust to the news and my change of plans.

The transition to home was not easy. Just like the transition to hospital had not been easy. No one is prepared for, or has the tools needed, to help an autistic person adjust to these dramatic changes in environment. It occurred to me that I had been so busy trying to survive the chaotic environment of the hospital that I had barely had a chance to think about how poorly my autistic needs had been met. My autism was never taken into account, never adjusted for, and barely understood. I had left hospital not because I was better, but because it was starting to make me feel worse.

The benefit of hospital was being in a safe environment with a completely stripped back and simple routine, where my dark depressive thoughts had no oxygen to continue burning at the intensity that they had been. However, as an autistic person, that lack of oxygen also felt suffocating. Indeed, the environment would be suffocating and difficult for anyone in a crisis, but adding into that mix sensory sensitivities and an intolerance to change and uncertainty, the environment can become detrimental to recovery.

I returned home still in need of more intense support than my Community Mental Health Team could provide, and so I found myself under the Crisis Home Treatment Team again for the next 2 weeks. After the experience of hospital, I found this to be a welcome change of support. Despite my earlier misgivings of the team, I knew I would at least be able to have daily contact with mental health professionals who could help me process the overwhelming feelings and emotions that had been ignored in hospital. However, I was desperate to get back to the community support and the routine I was used to before my crisis, and after a while found the constant influx of new people in and out of my home every day more anxiety provoking than it was worth.

My recovery has not been easy or in any way linear. I have found myself not only trying to overcome the mental health crisis that landed me in hospital in the first place, but also the trauma that being admitted on an acute locked ward caused me. Rather than seeing it as a safe place I can turn to when things get bad again, I live in fear of ever becoming so unwell again that it is my only option.

Conclusion

I do not regret being admitted into the hospital or seeing the Crisis Home Treatment Teams that I have seen over the years, and I would consider these options again in the future. They are often staffed with amazingly compassionate people. However, resources in these services are lacking and I cannot deny that with each new mental health crisis I find myself filled with terror at needing to re-enter this system again, asking myself what pain it will cause me this time.

A fear of what harm a service might do should never be a factor when choosing to reach out for help or accept support offered, and yet for many of us it is one of the most important questions we must ask ourselves each time. Although these services pose the risk of traumatizing even nonautistic patients, there are aspects of the experience that make it even more frightening and confusing for autistic patients, in particular, the high levels of uncertainty and triggers to sensory sensitivities. Research has shown that intolerance to uncertainty, the regulation of emotions, and atypical sensory functioning may mediate the increased anxiety experienced by many autistic people.⁶

With this in mind, environments such as acute psychiatric wards may worsen symptoms for autistic people rather than treat them. Early evidence shows the importance of reducing anxiety for autistic inpatients in crisis by paying attention to triggers in the physical environment,⁷ as well as providing more autism awareness to staff (e.g., the use of sensory tools and ways of minimizing the exacerbation of stress in autistic adults in crisis).⁸

I chose to share my personal story to highlight how these environments can really feel to an autistic person, but of course we are each different and have different experiences and needs. I hope that by sharing more of our lived experiences that it may lead more researchers and clinicians to address these issues and help more autistic adults in crisis receive the care they so desperately need.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.