The Misdiagnosis of Autistic Distress in the Mental Health System
When I am asked why I wrote Girl Unmasked, I say that I was angry. Which is true. I was angry at finding myself sectioned on a psychiatric unit at the age of 16, at the doctor there telling me I just had high social anxiety not autism, at the fact they described my autistic meltdowns as ‘hysteric attacks when she doesn’t get her own way’.
My anger only grew when I discovered how many other autistic people were struggling like I was with being autistic in a world which doesn’t accept us very much, ending up stuck in a mental health system where our autism wasn’t being recognised or understood.
80% of autistic people experience mental health problems at some point in their lives. There are sadly such high rates of mental illness and suicidality amongst us. But far too many of us don’t even know that we are autistic until we have reached rock bottom, if even then.
80% of autistic girls don’t know that they are autistic by the age of 18 and are diagnosed on average 6 years later than their male counterparts.
Justice for Black Girls state that many Black autistic women and girls aren’t diagnosed as children, if ever, because they don’t fit the white male-centred profile of autism.
For those who are diagnosed, 1 in 4 believe they were misdiagnosed before their autism diagnosis, and 17.9% of autistic women feel they have previously been misdiagnosed with a personality disorder. Myself included. I was discharged from the CAMHS unit at the age of 16 with a diagnosis of Mixed Personality Disorder - Emotionally Unstable and Obsessive Compulsive Personality Disorder, as well as Generalised Anxiety Disorder. Worse still, the traits of EUPD and OCPD so clearly describe a distressed neurodivergent young person.
The diagnostic lists of EUPD/BPD and OCPD versus autistic traits which could look similar. This isn’t to say an individual can’t have either of these conditions as well. Some autistic people identify as having both, which is valid. But so often these diagnoses are given to autistic people without even considering that they could be autistic, or how their autism or trauma might present similarly.
The Royal College of Psychiatrists say that unadapted therapy for autistic people is ineffective at best and harmful at worst. So if our autism isn’t recognised, how are we going to get the right treatment and the right support?
When we are trapped in the system, in what feels like endless cycles of crises, we are asked why we aren’t getting better. But how do we get better when so often we are trapped in a cycle of no understanding, receiving inappropriate treatment, for conditions we might not even have?
I was lucky to escape the cycle, through my autism (and later, ADHD) diagnosis, a strong family and friend support network, and receiving therapy from professionals who did understand. Every autistic person deserves that.
I am now a mental health nurse, a Trustee of Autistic Girls Network charity, and author of ‘Girl Unmasked: How Uncovering My Autism Saved My Life’. Life is now good. In a way I could never have imagined. Finding the autistic community has been healing. Meeting people you can relate to, having role models to look up to who you can see yourself in, and being given the language to understand yourself and your brain can be life-changing.
There is power in understanding your brain. I will always be grateful to have that privilege. I hope that more and more neurodivergent people are also granted it.
I gave the above blog post as a talk recently at An Alternative Perspective event in London. Thank you for inviting me to speak. Check them out on social media @aapnetworking.
GIRL UNMASKED (The Sunday Times Bestseller) is available to order from Amazon and all major bookstores! Available as a hardback, eBook and audiobook. https://linktr.ee/girlunmasked
References
Autistica. (undated). Autism and mental health. https://www.autistica.org.uk/downloads/files/Mental-health-autism-E-LEAFLET.pdf
Justice for Black Girls. (2024). https://www.justiceforblackgirls.com/
Kentrou et al. (2024). Perceived misdiagnosis of psychiatric conditions in autistic adults. The Lancet, 71, 102586. https://doi.org/10.1016/j.eclinm.2024.102586
McCrossin, R. (2022). Finding the true number of females with autism spectrum disorder by estimating the biases in initial recognition and clinical diagnosis. Children (Basel), 9(2), 272. https://doi.org/10.3390/children9020272.
Royal College of Psychiatrists. (2020). The psychiatric management of autism in adults. https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2020-college-reports/cr228
Thomas, A. (2022). Autism diagnosis six years longer for girls, research finds. BBC News. https://www.bbc.co.uk/news/uk-wales-61553150