Open Response to Philippa Perry

All my early memories are tinged with an unshakable feeling of being profoundly different. As a baby, I refused to eat food I deemed broken or misshapen. By the time I could walk, I'd already become incredibly socially anxious. If anyone came to the house, I'd refuse to speak, instead preferring to hide under the bed or in a cupboard until they left. I spent an unusual amount of time squirrelled away in some cramped, dark space or other; I found them oddly comforting. The world beyond the safety of my various hidey holes was a jarring cacophony of sensory overwhelm and unsettling unpredictability.

I couldn't for the life of me understand why people did what they did, especially other children. They were all so shouty and illogical. I was in constant discomfort; the neckline on all my jumpers itched, the fridge hum nauseated me, and fluorescent lights made the back of my eyes feel weird. This place, this life, made no sense at all. My feelings of otherness were so profound that by primary age, I'd convinced myself that I was an alien and that any day now, my people would arrive in a big shiny spaceship to take me home to the mother planet. School was excruciating. I'd lie awake every night in a state of panic, willing it to fall into a sinkhole.

My phobia became so intense that by age eleven, I'd started self-harming by forcing objects behind my eye sockets in the hope of being sent home. I was fully prepared to go blind if it meant I never had to return. My plan wasn't a complete failure; I was grateful to be allowed one afternoon off weekly to visit a warm and well-meaning psychiatrist. My doctor was a decent bloke with kind eyes and a salt-and-pepper beard. He was supportive, encouraging and generous with his time and words. Unfortunately, he completely ignored what I told him about my social anxiety and sensory struggles and pinned my anomalous behaviour on my absent father. In reality, my dad rarely entered my mind, and when he did, if anything, I was grateful that he wasn't around. He wasn't the most empathetic of characters, and it was one less person to mask in front of. Obviously, I didn't know what masking was back then; I just had an intense feeling that the person I was at my core was unacceptable and needed to be hidden. As my peers were learning to be social, I was learning to be ashamed of myself. I was hyper-aware of my differences and sensitivities. Even as a young child, I understood that being soft and weird weren't exactly considered virtues in the post-industrial northern sink estate I called home. So, I did my best to hide myself, often with humiliating ineptitude.

I developed complex strategies to avoid unwanted interactions. At school, I would forgo my free school dinner. Hunger was a small price to pay if it meant avoiding the sensory mayhem of the dining hall. Instead, I'd spend my break time briskly walking circuits of the grounds in an attempt to look too busy to stop and chat with anyone. As I got older, I would employ this same tragic strategy at nightclubs, festivals and social events until I eventually figured maybe the outside world wasn't for me.

Even as a small child, I always preferred the company of adults. On the whole, I found them slightly less erratic. Some would even feign interest in my encyclopaedic knowledge of dinosaurs and Egyptology or answer my unending questions about natural disasters and thermonuclear war. Despite my many academic deficits, I was generally regarded as bright. This was odd, considering I rarely completed any school work and got through the entirety of my secondary education without ever handing in a single piece of homework. It didn't seem to be much of a problem.

Like most council estate kids with complex issues, I eventually fell through the cracks. By fifteen, I'd been expelled; the ensuing years were a predictable miscellany of homelessness, hardship, violence and trauma.

I seemed to struggle with the chaos of poverty and homelessness more profoundly than most of my peers. After a few years of feeling very vulnerable and being on the wrong end of some ferociously violent attacks, I was eventually admitted to a psych ward.

What felt like a cursory assessment saw me diagnosed with bipolar disorder and PTSD, for which I was promptly medicated on a cocktail of antipsychotics, mood stabilisers and heavy barbiturates. The middle-class psychiatrists I'd seen had clocked my underclass swag, taken one look at my address and jumped to their default conclusion.

The assumption was that I was from a chaotic environment; therefore, I must be a chaotic person. I doubt it even crossed their minds that I might be an autistic person grappling with the challenges of navigating said chaotic environment.

Over the next twenty-five years, I was prescribed innumerable ruinous medications, each of which came with an array of side effects ranging from the bizarre to the life-threatening. Antipsychotics that can cause Gynecomastia (male breast development), and mood stabilisers that can cause aggression. On one occasion, I was rushed to the local hospital and told I might have to have my eyelids sliced off because it was suspected that my Lamotrigine had caused a life-threatening condition called Stevens-Johnson syndrome. After a five-hour wait in A&E, I was informed it was a false alarm. I have hundreds of similarly farcical stories that paint a picture of a shambolic mental health system populated by an overabundance of practitioners whose confidence far outweighs their ability. I spent decades informing an ever-changing team of psychiatrists, psychologists, crisis teams and support workers that my medication wasn't working and, if anything, made things worse. The response was always the same. Up the dosage, and when that didn't work, swap me over to something stronger.

A few years ago, I finally summoned the courage to go against medical advice and terminate my medication.

In many ways, I felt better. However, I still had lifelong symptoms that remained unaffected by the countless medications and therapies I'd been forced to endure. My wife pointed out that my symptoms were far more congruent with Autism and ADHD than bipolar disorder. She was right, and after a couple of years of research, I felt confident that a self-diagnosis would be useful and appropriate. It was useful because it would allow me to inform people why I was making certain lifestyle changes and requesting small accommodations. For example, if someone asked me why I was wearing ear defenders in a quiet workspace, it was easier to say Autism rather than offer some protracted explanation about noise sensitivity and waiting lists for formal diagnoses.  

Speaking of which, that formal diagnosis took three years to acquire. I could've received it within a week if I'd had the money to go private. This is one of many reasons I believe that self-diagnosis can be essential and why diminishing it feels elitist and exclusionary.  

For myself and many others, self-diagnosis was an essential step in a process of healing, leading us to understand ourselves better. It can bring us closer to finding alternative ways of navigating a world that isn't designed to accommodate us.  

Some people will read your statement dismissing self-diagnosis and question their knowledge and judgement. They'll put off managing their needs and employing self-care that could vastly benefit them because they value your judgment over their own.  

For me, self-diagnosis was protection; it kept me safe from a woefully inadequate mental health system. Without it, I could've easily ended up playing out my days languishing in a locked psych ward whilst being drugged into a waking coma for a condition I don't even have.

Whatever your thoughts and prejudices regarding neurodivergent TikTokers, the reality is that in a short time, that community has taught me more about practically managing my condition than three and a half decades of professional mental health interventions. Of course, there are grifters and phonies on social media. At least, with them, we have the option to scroll on. The grifters and phonies operating within the system do far more real-world damage than any self-diagnosed Instagram influencer. To deny the knowledge and integrity of experts by experience is laughable, given the general standard of practice that service users have to suffer. To imply that we can't possibly understand ourselves and our needs is patronising and arrogant. As someone who has spent most of my life being gaslit and ignored by mental health professionals, I would absolutely encourage people to seek out and listen to experts by experience as a useful addition to their professional treatment. I'd argue that the fact that peer support isn't already standard practice is yet another systemic failing.

I would also argue that self-diagnosing neurodivergent conditions helps far more people than it harms. It can point people towards a community that understands them, wants to help, and offers comfort, answers, and practical solutions. So, my question to you, Philippa, is, who does invalidating self-diagnosis serve? It certainly isn't neurodivergent people. I'm baffled by your position on this. You have cultural influence; your job title gives your words gravitas and validity. You have a broad reach. It's disappointing that you're using that power and reach to deny people agency.

Being neurodivergent has been the single most impactful element in my life. Yes, it's only one ingredient, but it's an incredibly spicy one. It's a Carolina reaper in a bowl of porridge.

My neurodivergence has informed every decision I've ever made. Everything from what I do for a living to which fork I eat with is dictated by my neurodivergent sensitivities. Furthermore, these neurodivergent parts of ourselves are parts we've spent most of our lives hiding under a veil of shame and social pressure; revealing them takes no small amount of courage. So, of course, our neurotype is part of our identity, and we wear it with pride. We've spent our lives being told in myriad subtle ways that we don't belong. Well, it turns out there are quite a lot of us, and we want to signal to each other that we exist. We want to create spaces that are sensitive to our needs and that celebrate our differences.

Most importantly, we want to share advice about how to cope in this perpetually exhausting neurotypical world. So yes, neurodivergence is a prominent part of my identity. I don’t really understand why that would be a problem unless you regard my neurotype as in some way lesser. Like many people coming to terms with a late diagnosis, I’ve experienced a gradual acceptance of my differences that has been both empowering and enabling. I’m only too aware of the fallibility of mental health professionals, so I read your statement, rolled my eyes and got on with my day. But then I saw the depth of feeling that your statements have stirred in my community, and I started thinking about all the times my lived experiences were dismissed. Medical practitioners can have authority over important elements of our lives. They have a duty of care. When they refuse to listen, there can be consequences that have a severe and lasting impact. I hope you at least take on board and attempt to process some of the feedback you’ve received, and I hope it helps you see the value of lived experience and appreciate the validity of self-diagnosis and its necessity when conventional services simply aren’t meeting people’s needs.