Praise

Sometimes the most powerful stories are the ones that emerge from our darkest moments. A Baker’s memoir “Patient A” is exactly that kind of narrative – a raw, unflinching journey through misdiagnosis, mental health struggles, and ultimately, self-discovery.

This deeply personal account follows the author’s 35-year journey to understanding her neurodivergent identity. What sets this memoir apart is its brutal honesty about the medical system’s failures and the devastating impact of misdiagnosis. Baker doesn’t just tell her story; she illuminates the systemic issues facing many neurodivergent individuals who are frequently misunderstood and incorrectly labeled.

The narrative weaves through various phases of her life, from childhood bullying to adult isolation, creating a tapestry that many readers will find painfully familiar. What’s particularly compelling is how Baker handles the intersection of autism, ADHD, and mental health challenges, offering insights that feel both deeply personal and universally relevant. Her experience with eating disorders and hospitalization is handled with sensitivity while maintaining its raw emotional impact.

The book really shines in its exploration of resilience. Despite facing devastating losses – including her mother’s tragic death – Baker’s journey toward becoming a yoga teacher and helping others adds a powerful dimension of hope to her narrative. This transformation echoes memoirs like Temple Grandin’s “Thinking in Pictures,” though Baker’s voice is distinctly her own.

This book will resonate deeply with anyone who has experienced the frustration of being misunderstood by medical professionals, as well as those seeking to understand neurodivergent experiences better. It’s particularly valuable for healthcare providers and mental health professionals who want to improve their understanding of autism and ADHD in adults.

‘A’s’ memoir manages to maintain a wry sense of humour whilst covering a range of topics that generally aren’t considered ‘acceptable’ conversation: Institutionalization, rape, suicide, episodes of ill mental health. Throughout ‘A’ avoids what would be well-deserved, anger, self-pity, and defeatism. Her recollections are astute, extremely honest, and frequently hilarious.

“Where do I begin? I’ll start by introducing myself. It’s only polite. I am A and I have autism.”

One reason ‘I’ was asked to review ‘Patient A’ was because of my own Neurodivergent identification (Dyslexic/Dyspraxic/ADHD/Autistic/OCD). I knew very little about the narrative other than that it detailed a female Neurodivergent journey through educational milestones; I anticipated overlaps between our experiences. However, I wasn’t ready for such dramatic synergy.

“All the stress of university and moving had taken its toll. My eating disorder had taken a grip of me…”

The beginning of ‘Patient A’s’ memoir focuses on her starting university and balancing this new life with her existing eating disorder. This ‘transitional’ period, which is difficult for many young people, can be shattering for Neurodivergent individuals who aren’t afforded appropriate support.

“I fell into a deep depression as again, I found myself being an outsider.”

At university I also struggled greatly with self-image and food intake (leading me to ‘drop out’). Attempting to ‘fit in’ and keep up exhaustive masks can involve frantic people-pleasing, internalising criticisms, fixating upon how we present, and hiding mental health difficulty. This, alongside the challenges of being away from home and living in shared accommodation, on top of the anxieties induced by assignment deadlines, can for many make starting university a time of chaos and extreme loneliness.

To make friends and pursue her passion in sport, ‘A’ joined her university running club, but, with exercise being a somewhat contentious passion for individuals with eating disorders, she decided to reach out to her Doctor to see if they could offer her any support acclimatizing; and this is where it all went wrong.

Instead of listening to her concerns, the medical authorities cornered ‘A’ into a surprise ‘section’. Thrust into yet another new environment ‘A’ was to experience the full force of an inflexible, uncompromising, uncompassionate, and ultimately discombobulated hospital stint. To protect anonymity, ‘A’ changes the doctors and nurses names to those of birds; a nod to ‘One Flew Over the Cuckoo’s Nest’, revealing that several medical professionals used their position to degrade, rather than help.

Counterintuitively, due to the presumption that “all anorexics lie” by understating the amount of exercise and food they are consuming, doctors, some of whom ‘A’ had never met, imposed bedrest, which she was seen to breach by ‘frantic texting’! They also began ‘starving’ her, prescribing her much less food than she had been eating at home. ‘A’ can’t abide breaking rules. After stealing a chocolate out of hunger, she turned herself in, and an uncompassionate nurse threatened to “write her up”. ‘A’ retorted, “Go on. I suggest the words you should write are ‘anorexic steals chocolate’. Read it back and realise how stupid that sounds.” Under the new scheme ‘A’ lost weight and became far more depressed. It was only after appealing her section and being ‘released’ that she began to get better.

‘A’ shared a number of childhood memories, one being that she had been labelled a ‘picky eater’, and began to experience difficulties soon after beginning school, leading to her eventual anorexic diagnosis. A common but overlooked autistic experience is that people can wish to eat specific food, and eat in a specific way, or place.

Many of us find mealtimes anxiety provoking, myself included. At a similar age to ‘A’, I developed an eating disorder, in part due to a new school rule stating that no child could leave the table until everyone had finished eating. I was an incredibly slow eater, with the pressure of everyone looking at me, angrily insisting that I finish faster so they could play, I developed a disorder surrounding food. The impact of thoughtless, uncompromising, and generally unkind regulations within educational facilities can have a lifelong impact.

Though I felt unity with several of ‘A’s’ early experiences, it was the second half of the memoir that really hit home. What are the chances, that two autistic women, of similar age, had both supported their mother through experiences of sexual assault, PTSD, and a developing bi-polar condition. ‘A’s mother’s abrupt, erratic behaviour, intense changes of mood, and long bouts of depression felt all too real. But, as I read, I hoped, that at least for her, the ‘end’ may have been different.

“I hit the floor, wailing on the gravel. Arms flailing around, shouting ‘I want my mum, I want my mum’ over and over again […] Mum was gone and life as I knew it would never be the same again.”

I was wrong; both our mum’s, neglected by rickety, callous, and ultimately ineffectual mental health services, in states of extreme unwellness died by suicide in recent years. The realisation that the book that I was reading contained a parallel narrative to my own did not offer comfort. It illustrated a realisation that what happened to my own mother wasn’t a ‘one off’, that could be learnt from, but rather, the system is fraught with a wider systemic ill-treatment of the vulnerable.

“Whilst encouraging me to ‘step back’ I was given the false illusion they (mental health services) intended on helping her.”

Something that was apparent in both A and her mother’s narrative, was that their kind, open, and trusting natures were taken advantage of. Autistic women can be very vulnerable to abusive relationships. Supporting a parent through their experience of rape is a relatively untouched subject. Having been in a similar position myself, it felt raw, but almost refreshing to see the manner in which another person had reacted. To read how someone else had stepped into a ‘parental’ role to support their mother, forced into regression by trauma, made me feel a bit less guilty for, at points, shutting off and feeling overwhelmed by the situation I was faced with.

As a society we are only just beginning to acknowledge the effects of generational trauma; ‘Patient A’, clarified how past and current treatments towards Neurodivergent Individuals can have a knock-on effect that pools out to impact family units. A’s mother was not supported through bouts of very ill health and trauma related to sexual abuse. She had been a lifeline to ‘A’, but unfortunately became too ill to support her in adulthood.

A’s aunts distanced themselves, unable to take some of the strain and emotional toll. Watching her mother fall more and more unwell, within a broken and unempathetic system, combined with ‘A’s’ own personal experiences of mental health institutions, goes some way in instilling rippling sentiments of despair and hopelessness.

Realising that you are struggling to keep a loved one safe, while also comprehending that, there might be nothing else, or, in a desperate bid to help, you might be sending them into the arms of a nightmare institution, with the potential to push them over the edge, is one of the worst predicaments a person can face. People are told to ‘reach out’… but to who? So few services offer specialist, sustained support. Many Neurodivergent individuals rely on close friends/family, and too many are forced to foster resilience in the face of overwhelming defeat.

Shame, stigma, and lack of support for Neurodivergent individuals and those with mental health conditions, has undoubtably led to several similar trajectories to ‘A’s (and my own) across the country. The autistic community experiences exceptionally high suicide rates, which considering extensive NHS wait times, the lack of empathy or understanding and lengthy periods of isolation, is really not surprising.

Something I really enjoyed about Patient A’s trajectory is that it demonstrated a multi-faceted, complex, human life. As well as being autistic ‘A’ presented with physical disabilities: Raynaud’s, a circulation difficulty making her appear ‘bluish’ (which was mistaken for worsening anorexia), as well as dystonia and hypermobility. Potential links or overlaps were not recognised or catered for within mental health units she attended. ‘We’ do not live in an autistic vacuum. More recognition is needed to the fact that we all have individual, intricate lives, and that many of us are both being supported and supporting other struggling Neurodivergent friends and/or family members and that ultimately this isn’t the life we want.

‘A’ went on to complete university and get a degree. She studied to be a yoga teacher and became a jog leader for her local LGBT running club. She also managed to travel, visiting New York City and Spain. She managed all this before being sectioned for a second time.

Currently many of us are either succeeding in the face of huge adversity (at the expense of our own mental health) or, simply ‘failing’, through lack of opportunity and exhaustion. This is not a narrative in which we are complicit.

“The stigma and attitudes of someone being ‘crazy’ or ‘mad’ for being admitted to a psychiatric hospital unfortunately still exist.”

Something that I related to in A’s memoir is that, at points, just putting one foot in front of the other (except when assigned ‘forced’ bedrest!), is the only way to exist, and, hopefully, move forward. ‘A’ felt that, after being ‘labelled anorexic’, it was really hard to get anyone to see her from a different angle (due to the assumption that all anorexics are liars!). In her writing ‘A’ highlights that there is currently a ‘one fits all approach’. Despite her efforts to ‘get well’, she was consistently undermined by doctors, nurses and other medical professionals.

‘A’ expressed that an earlier Autism diagnosis would have afforded her more comprehensive treatment and potentially lessened ‘misunderstandings’, but I contend this, having gained my own diagnosis at eight.

I experienced more rigid, further stigmatised attitudes based upon presumptions and stereotyping. An onus seemed to be to make me present ‘un-autisticly’ through invalidating my experiences. I sought to be ‘undiagnosed’ in my late teens, feeling that ‘autism’ was a dirty secret, and that the stigmas outweighed my personality. I battled to prove I wasn’t ‘that way’ autistic and teachers, untrained in AS nuance, accused me of faking autism for ‘special treatment’. I was also told I shouldn’t persue drama and creative arts due to their social implications.

If Institutions do not have accepting, compassionate approaches to working with people under their care, the act of being diagnosed (or not), is negligeable (and potentially counter-intuitive!). Having a diagnosis of autism, perversely, can be a hindrance when trying to access mental health services, several of which claim not to have specialised experience ‘with autism’, and will not cater to those with autistic diagnosis.

Likewise, services that do ‘specialise’ in autism often do not cater for ‘other’ mental health conditions, such as eating disorders. Meaning that, often, if you’re autistic and anorexic, you either need to ‘treat’ these elements of self as entirely unrelated, or keep one secret to access help. What is painfully obvious is that the ‘criteria’ for needing help does not accommodate the needs of a number of vulnerable, diverse individuals. ‘Patient A’ highlights how important it is to coordinate to provide flexible, versatile, multi-accessible services.

Reading A’s narrative triggered elements of my own rapid flowing OCD; the type of solidarity I experienced permeated past empathy and invoked more direct feelings of pain and desperation. Perhaps this is one of the true powers of autistic writing and solidarity. ‘A’ should not have needed to be excessively resilient. She should have been provided safety, support, compassion and understanding. Lived contemporary histories, like ‘Patient A’, draw attention to real autistic survival, joy, endurance, and enable more narratives to connect, perhaps they’ll even enable a few more to understand, and make changes.