Misdiagnosis & The Absence Of Trauma Informed Care

aka what it's like getting misdiagnosed with a psychiatric disorder as a queer, autistic teenager.

Content note: this article contains discussion of depression trauma, homophobia and references to self-harm and disordered eating.

It always felt like a cruel joke that National Coming Out Day comes the day after World Mental Health Day.

I think it’s easy to look at my confident exterior - the loud purple hair, the ability to share my story on stages, to write about my deepest truths on the internet and assume it has always been the case or even that it is the case at all.

The truth is, I’m a 24 year old woman living with the same insecurities I had when I was 14. In fairness to myself, nothing really prepares you for the experience of daily messages telling you to kill yourself, that you’re going to hell, that your parents want you dead. And those were the less graphic messages I got - most were much more instructive with regards to all the ways I should hurt myself.

Naturally, I became very depressed, started self-harming and my relationship with food and my body went - for want of a better phrase - tits up. Because I was always academic and because my grades didn’t slip, I flew under the radar. I was never confident in my body anyway so continued to hide in baggy hoodies and jeans. The weight loss was praised universally as self-care because no one cares how overweight teenage girls get thinner. Those images of people who become withdrawn have never aligned with my own lived experiences - when I’m most ill, I tend to be the most ‘acceptable’ within society. I’ve learned that’s not uncommon amongst the autistic women I know.

Attempts to get help from teachers went abysmally: from the compassionate teacher who thought she was helping but actually forced me out of the closet, to the teacher who just told me to get over myself, when I took her evidence of the online abuse I was getting. I stopped opening up and my brain started cannibalising itself. After all, the abuse I received was from the other girls at school, the content of the messages made that clear. They knew where I sat at lunch, could be any one of my friends. To this day, I don't know who it was.

When I found myself referred to my local mental health team aged eighteen - four years after my mental health problems began - they immediately realised something was quite seriously wrong with me. I was erratic, extreme, still self-harming and beyond self-loathing. I was also ridiculously successful and thriving in all the societally expected ways. I have come to learn that this is not an uncommon experience amongst the autistic women I know.

It’s ten years ago since I came out and five years ago since I was misdiagnosed with bipolar disorder and also correctly diagnosed with autism. I’m always apprehensive to talk negatively about my experience with misdiagnosis, in case it comes across as though I am berating those who have that (correct) diagnosis.

In my experience, it was easier for my psychiatrist to see a teenage girl with erratic, extreme mood swings, chronic self-harm and near-constant low-level suicidality as having bipolar. There isn’t really a medical term for ‘homophobia has completely destroyed her sense of self, self-esteem, well-being and all interactions with the topic of LGBTQ+ matters makes her have panic attacks.

It was only years later that I would get the treatment that I needed and only because I got misdiagnosed and subsequently referred through a psychosis pathway. I was fortunate to be given a Care Co-Ordinator who was a queer and trans person familiar with neurodiversity. I didn’t have to explain what it was like navigating the world, because she got it. She advocated for me to get the best care I could, eventually securing me a therapist who over the course of a year worked so hard with me on reprocessing trauma. I am not exaggerating when I say she saved my life.

I had never considered that homophobia might count as traumatic. Trauma, to me, was what people fleeing war zones or who had experienced abuse had. I had also encountered doctors who thought like this and being a teenager, I didn’t know how to argue. I don't think they were ever equipped to understand what homophobia does to a person’s psyche.

I always wonder what my experience with the mental health system might have been if that system was trauma-informed. There is no way I would have been given a bipolar diagnosis after spending only an hour with me and whilst I was also awaiting an autism assessment.

Autism was more than a diagnosis for me, it was a lens through which I could view my life and see them, for the first time, with clarity. It was a new perspective, one which considered my whole self rather than compartmentalising different parts of my life. Most of all, the diagnosis helped me understand why perhaps my responses to situations were alway a little bit peculiar.

From the earliest age, when other people were crying around me, I would just stand there and wonder why they were doing that. It’s not that I don’t have feelings, it’s that feelings are so hard to even recognise. I’m just so unaware of the feelings that I’m having it is as if they are not there. I’m not repressing them, they just don’t manifest; it’s like that secret folder of Facebook messages you never realised you’d missed because no one notified you. This inability to connect with my emotions, combined with an extreme psychological response to homophobia - internal and external - was the perfect catalyst for misdiagnosis.

My therapist realised very quickly that the standard CBT approach wouldn't work for me - asking me to identify thoughts and feelings was as useful as asking me to play badminton with a spatula and an avocado. Asking me as an autistic person to talk about my feelings is like asking me to explain the plot of the Hitchhikers Guide To The Galaxy to a five-year-old. We’re operating on completely different wavelengths, with completely different points of reference. At best, I’ll only ever be able to communicate in approximations, knowing full well I’m simplifying for my audience.

I really struggle with therapy in general because it takes so long to even establish a common language and outline my internal processes, let alone actually work on them. Initially the NHS gave me 6 sessions with the therapist I worked with; she fought to get me 32. And honestly? I’ve never been that bad since. Sure, there’s stuff I need to work on as a human being but I have never been in that darkest of dark places.

In all, I still consider myself one of the lucky ones. So many autistic and/or LGBTQ+ people I know have ended up with misdiagnoses, forced medication regimes or institutionalisations. In particular, I’ve seen more trans & autistic friends than I can count slapped with the label of BPD because told me they cannot be helped.

I don’t even know how to tell my own story anymore, or if it even matters. I guess it was easier when the narrative was linear, when I had a concrete diagnosis I could point to. Now it feels like I’m a list of treatments and approaches that have and have not worked, areas of improvement and places I’m still yet to begin work on.

My feelings on all of this are a messy work-in-progress.