Alexis Quinn is an autistic author whose book ‘Unbroken: Learning to Live Beyond Diagnosis’ shares some of her experiences within mental health institutions in the UK.
Published in 2018, this book uncovers some of the harrowing experiences Alexis endured during her 3 and a half years trapped within the mental health system. Effectively incarcerated following a period of grief and uncertainty, Alexis was misunderstood and mistreated by the institutions in place to help and support her. Her autism diagnosis was only given after she had been misdiagnosed with 6 other labels, and was ultimately ignored by the plans and professionals in place to provide her care.
Alexis’s tale demonstrates how grossly mental health care can fail an individual. Sadly, in her experience, there were no real therapeutic solutions for her when she was in crisis. She describes an all too familiar medicalised model, where there is merely the ‘illusion of getting help.’
By sharing her story, Alexis advocates and becomes a voice for other autistic people trapped within the mental health system, whose needs fail to be met and recognised by the officials in charge of their care:
‘I’m telling my story on behalf of the thousands of people with autism and/or learning disabilities who are inappropriately detained in hospitals for assessment and treatment.’
Alexis argues that these inadequate services and institutions ‘rely on the silence of people inside who cannot speak for themselves,’ and as such she has shared her own experiences in the hope of giving a voice to the many silenced victims of similar unacceptable practices. In this book, Alexis describes how uncomfortable and threatening many of the facilities she stayed in were:
‘We went in there and it was like a scene out of ‘One Flew Over the Cuckoo’s Nest.’ The corridors felt narrow, nowhere to move, and dimly lit. When you enter the ward, you face a large glass office that faces on to the corridor door. I approached the desk, but to speak to the nurse, I had to bend down, open a little hatch and talk through that. It was undignified. I felt I couldn’t be trusted to have a normal conversation. It made me cross when I first went there.’
The ‘aesthetically pleasing bedlam’ Alexis describes certainly does not sound conducive to a therapeutic and comforting environment for people in crisis, especially when you add into the equation many other distressed individuals:
‘My first few days were disturbing, to say the least. I was scared. Not only of myself and my own dysregulation and vulnerability, but also because I was suddenly locked in with other people in conditions of such distress I had not known existed. The airlock was a space of about 10 metres with a set of locked double doors at each end. There was no escaping our madness.’
Herding distressed people together has never been advocated by Studio 3. In response to the Whorlton Hall abuse documentary released by BBC Panorama in 2019, Professor Andrew McDonnell, Clinical Psychologist and CEO of Studio 3, published an article called ‘Bring People Home,’ commenting on individuals living in in-patient units. Whilst it is widely acknowledged by professionals that this is an unsustainable and untherapeutic method of caring for vulnerable people, we lack both funding and support for alternative interventions:
‘We criticise people for the large number of individuals in this type of care, yet we do not adequately resource specialist community resources to support these people. In my opinion, there needs to be both a top-down and bottom-up approach to changing these services.’
At Studio 3, we believe that support within the community is essential to give people the individualised support they need, that cannot be provided within hospital settings where large numbers of distressed individuals are grouped together and essentially detained. Alexis describes on many occasions being detained in centres sometimes as much as ‘a two-hour drive from [her] family home.’ Isolating and removing vulnerable individuals from their families and support networks cannot enable these people to flourish. Professor Andrew McDonnell has recently commented on this, stating, ‘We are spending huge sums of money supporting people with very complex behaviours quite literally miles from their homes and communities.’ He has advised that, when people do require behavioural or mental health support, it should be close to their homes and within a community setting:
‘Sending people hundreds of miles away from their family and supports places them in a form of isolation. This reduces the likelihood of visits, which is an important factor in the external monitoring of abusive practices.’
In one of the few placements that seemed to be genuinely helpful, compassionate, and therapeutic to Alexis, there was a community-based system in place by which residents ‘had influence, and … control over how [they] lived and ran [their] community.’ It is so important to empower individuals in crisis, and to give them a sense of control over their environment. This an essential component of the Low Arousal Approach used by Studio 3 practitioners (McDonnell, 2019):
‘This need for control is a common coping mechanism for any stressed person. A high perceived sense of control gives a person some sense of safety. Removing too much of that control will almost inevitably lead to behaviour of concern.’
Enabling distressed people to advocate for themselves and communicate their needs in a way that will be heard with compassion, respect and understanding is key. This is where positive therapeutic relationships come into play, and are essential for building stability, safety, and trust so that individuals feel seen and supported. Alexis reported that, amongst many professionals who showed no compassion to her plight, there were individuals whose kindness and empathy were extremely powerful agents of change. One such individual is Robin, whom Alexis describes as ‘one of the few staff who bothered to get to know me.’ The power of positive relationships should not be underestimated, and reflective practice, empathy, and compassion are essential for any care worker.
As Professor McDonnell states in The Reflective Journey (2019) that, when building positive relationships is the goal, ‘restraint is an obvious barrier to this.’ Alexis describes witnessing instances of restraint and seclusion on other patients, as well as being restrained, secluded, and chemically restrained herself on many occasions. Alexis reports that ‘restraints are a ‘normal’ part of life in a psychiatric hospital,’ and describes witnessing her first restraint within 24 hours of being on an acute ward:
‘All the alarms went off. The staff went running. I heard a distressed person screaming and the staff shouting. I saw everything because they wrestled the person to the ground in the social area. I was shocked and very tearful. It’s rare that things affect me that way.’
The traumatising experience of witnessing restraint is a nearly daily occurrence and the sad reality of living on a ward like this. Restraint is a traumatising experience for those experiencing it, those witnessing it, and the staff performing it.
The use of alarms to signify the beginning of a restraint in institutions only serves to insight fear amongst the staff and residents. Alexis describes may occasions where staff would appear to the call of the alarm, and how this often served to escalate an already highly arousing situation, stating, ‘When you have four to six people running at you, it’s flight or fight.’ When restraint is part of the toolkit, it will be used, often without any attempt to de-escalate the situation first. Individuals are powerless to resist restraint or seclusion once an alarm has been pressed and staff flock to the scene, unaware of what has transpired, and too scared and dysregulated themselves to give the distressed person the space and time to calm down on their own. In The Reflective Journey: A Practitioner's Guide to the Low Arousal Approach (2019), Professor McDonnell advises avoiding gathering staff in a crisis, and instead having one staff member interact with the distressed individual in order to avoid over-stimulation. Support staff should remain out of the line of sight of the individual, and where possible onlookers should be removed from the area:
‘In crisis situations, carers can find it supportive to have other people around as it tends to make them feel safe. The paradox is that it will often increase the stress level of the individual. The more people who are witness to your actions, the greater the likelihood that your stress levels will increase.’
Stress, like many other emotions, is contagious, and we must be aware of what onlookers bring to situations such as these when they too are scared and stressed. When onlookers cannot be moved to a different area, facilitating planned escape is often a calmer and safer alternative to restraint or seclusion.
Many of Alexis’s own staggering 96 instances of restraint could have been avoided by a simple policy to allow planned escape. As a keen runner, Alexis reported feeling overwhelmed and panicked within the confines of the locked wards, and needed to escape to open areas to exercise and expend some of her pent-up energy. In many cases, this was not allowed, which only led to overstimulation and what is commonly referred to as a ‘meltdown’ by the autistic community. Alexis describes how she ‘panicked because [she] was stuck in this oppressive unit with too much going on,’ leading to an eventual state of hyperarousal and panic:
‘I was like a balloon that had been pumped up too much. The ward was a place where no air could escape the balloon, so even the faintest puff of breath could cause an outburst.’
Practitioners of the Low Arousal Approach will understand the need for large open outside spaces to be available in moments of crisis, or arousal levels and the situation itself can escalate. In The Reflective Journey, Professor McDonnell explains the benefits of allowing planned escape:
‘Planned escape will often increase a person’s sense of control over their environment. This does not just apply to people in care and school-type environments. It can be argued that most of the readers of this book will have used their own planned escape strategies from difficult or uncomfortable situations.’
Planned escape should be seen and encouraged as a coping mechanism for an individual to firstly recognise when they are becoming dysregulated, and then to remove themselves to a safe quiet space to calm down. In addition, this enables individuals to feel more in control of their environment and their emotions, which is extremely important for individuals to thrive in community environments.
Restrictive practices often flourish in highly punitive environments, where cultures of coercion and control have been allowed to propagate. In many cases, restraint and seclusion are used as punishments for behaviour that is misunderstood or sought to be controlled by staff. It is often the most vulnerable members of society who are victimised by these regimes. Alexis describes the pervasive feelings of oppression within such institutions:
‘Restraint isn’t always used to manage violent incidents. It’s most often to enforce detention and treatment. In an inpatient unit, people are continually restricted; doors are locked, clothes can be removed, jewellery taken away.’
Removing all control and power from distressed individuals succeeds only in making them more distressed. Alexis reported that in some settings, ‘If you don’t do exactly what they say, when they say, you’re in trouble.’ Our care facilities should provide therapeutic support on an individualised basis; not strip people of their human rights. Of course, the individuals who enjoy exerting control over vulnerable people are thankfully in the minority, but we must call out bad practice and restrictive cultures when we see them. Alexis has shared her horrific experiences in the hopes of shedding light on what many vulnerable people experience, and may never have the opportunity to express. Cultures of coercion and control can range from environments where ‘bad’ behaviour is reprimanded with many rules and sanctions, to environments were restraints (chemical and physical) and seclusion are used regularly.
Seclusion and restraint are not separate issues; they often go hand in hand. In his new book, Freedom from Restraint and Seclusion: The Studio 3 Approach (2022), Professor McDonnell discusses the need for alternatives to restrictive practices, and addresses the issue of defining seclusion as a separate issue:
‘It is always a challenge for Studio 3 practitioners to point out that seclusion is indeed a restrictive practice. My friend and colleague Steve Allison, who is a Principal Trainer at Studio 3, asks services how they think a person gets into a seclusion room because, in his experience, they rarely walk in. Secluding individuals will nearly always involve some form of restraint to get the person into the room, and we must be careful not to view this as a separate process.’
Alexis sadly has experience of both being restrained and secluded, and describes various traumatising instances of seclusion in Unbroken. Whilst many may see seclusion as ‘the lesser of two evils,’ Alexis’s experiences show them to be equally barbaric:
‘They grabbed me by my arms. That was so much pain. They pulled me out and put me in the calming room. There’s nothing calm about the calming room. You go into the calming room when you’re not calm. They pushed me to the floor… Then they injected me.’
Here, the seclusion room has been renamed the ‘calming room,’ a technique often employed to attempt to disguise the brutal reality of its purpose. It is, as Professor McDonnell says in his new book, ‘a rose by another name,’ and when there is a door with a lock on it, a room such as this can only ever be a place to contain distressed individuals against their will. Alexis was both physically and medically restrained in order to be safely maneuvered into this room: people do not enter seclusion rooms willingly.
In Alexis’s experience, seclusion was often used in lieu of individualised therapeutic support and de-escalation:
‘It’s much quicker and easier to lock somebody in a room than to talk things through, identify triggers in the environment, and make some adjustments. I have been secluded 17 times. Seclusion is a constant threat of extreme punishment hanging over your head. It’s wrong. There’s nothing therapeutic about the force that comes with the act. The aggressive removal of my clothes, other belongings, and the forceful injection of medications is inhumane. I was powerless.’
In another horrific instance, Alexis describes being secluded in a freezing room for hours, with attendants refusing her desperate pleas for a blanket or the temperature to be adjusted. Alexis describes feeling ‘an overwhelming sense of desperation’ as she begged with the people outside her door - the people who are supposedly there to care for and support her.
At Studio 3, we do not sanction seclusion in locked rooms, and instead focus on equipping staff and supporters with Low Arousal strategies to de-escalate situations without the use of coercion and control. Hospital environments where distressed individuals are herded together, far from their families and community support systems, are often where restrictive practices thrive, as Professor McDonnell discusses in Freedom from Restraint and Seclusion (2022):
‘My own personal experience is that seclusion rooms are primarily a product of herding distressed individuals together in overcrowded environments. My experience also tells me that once you have a functioning seclusion room, they are incredibly difficult to decommission.’
Facilitating support in the community for individuals is perhaps the most effective way of eradicating restrictive practices in our care settings, which Professor McDonnell discusses in more detail in this article. Flipping the narrative in highly controlling settings is more difficult, but not impossible, as can be seen in many settings in the UK and abroad where Studio 3 trainers and practitioners have made a significant difference in the practices of staff teams. For help eradicating restraint and seclusion from existing care settings, do not hesitate to contact the Studio 3 team for advice. Alternatively, Freedom from Restraint and Seclusion: The Studio 3 Approach outlines theoretical and practical steps individuals and organisations can take to address cultures of coercion and control.
Unbroken describes Alexis’s endurance throughout all her hardships, and is an inspiring tale of an individual breaking free from the cultures of coercion and control that sought to subdue and change her. Sadly, Alexis’s experience did not end with understanding and compassion; she absconded from her care setting and sought refuge with a friend. Far too often, people who find themselves in the care of the mental health system struggle to escape it. Hospitalisation is not the answer if our goal is to enable distressed and vulnerable people to flourish in their lives. The harmful medicalised model of treatment hung over Alexis’s experience, as she struggled to advocate for own needs within an institution that failed to see her behaviours as distressed and involuntary. As Alexis states, ‘There are ways to think of distress besides illness, faultiness, diagnosis, and treatment.’ Supporting individuals outwith a medical model means recognising and understanding their distress, and doing whatever is possible to support them and minimise this distress. Behaviour support should focus on changing the behaviour of supporters so they can be more compassionate carers, and focus on de-escalating distressing stimuli in the environment. This involves becoming more reflective practitioners, and being aware of how our own behaviour can impact the arousal levels of the people we support. Co-regulation is key; how can we expect a distressed person to calm down in a punitive environment where sirens signal the beginning of a traumatising event, almost every single day in some institutions?
Since being diagnosed with autism, Alexis, like many others, has found great relief and support in the community of autistic people who continue to bravely advocate for one another, and educate people who, like many of the professionals Alexis encountered in her plight, misunderstand autism and are ignorant of certain adjustments that autistic people may require. Alexis states, ‘I no longer felt alone in my struggles. There was this online community, and I learnt from them.’ At Studio 3, we often find that autistic individuals can answer the questions that many non-autistic professionals cannot. Listening to and amplifying the voices of autistic individuals is so important, and we hope that readers of this book will learn from Alexis’s experiences – particularly of restraint and seclusion. Alexis now works with the Restraint Reduction Network (RRN) and the Care Quality Commission (CQC) to improve outcomes for people receiving care.
You can find 'Unbroken' here to purchase. We'd also like to draw attention to a recent interview with Alexis where she describes her experience, and emphasises that she is not the only one – there are currently over 2000 autistic individuals being detained under the mental health act.
Written by Rachel McDermott
Studio 3 Information and Social Media Coordinator
Comments