Sam talks about Mental Health Awareness Day

Mental Health Awareness Day is a poignant day for me. As a late-diagnosed autistic person who was caught up in a vicious cycle of a wrong mental health diagnosis and frequent psychiatric inpatient admissions, this day is always bittersweet. 

When I was 18, and after a 50-minute session with a psychologist, I was diagnosed with Borderline Personality Disorder (now EUPD). I now know that this diagnosis went against all diagnostic criteria, but I believe that because the psychologist saw extensive trauma, self-harm and coinciding that I was female, they automatically assumed I had a personality disorder. Despite my not believing that this diagnosis was correct, I was caught up in trying to 'fit in' within the criteria of this particular mental illness. A classic sign of autistic masking.

Little did I know how much additional trauma this diagnosis would cause me. 

Unfortunately, the treatment for BPD at the time was Cognitive Behavioural Therapy, then Dialectical Behavioural Therapy and then Structured Clinical Management. After trying CBT and it actually making my symptoms worse, the self-doubt and feeling like a failure only exasperated. During this time, I was frequently admitted to the hospital, which spans over a period of 7 years, although I now can reflect back and know that being in the hospital was the worst place I could have been as an autistic person, especially with no reasonable adjustments.

My meltdowns and shutdowns were seen as behavioural, and physical force was often used against me, which again only heightened the distress I was in. I was transferred to a Psychiatric Intensive Care Unit (PICU) where I would receive multiple IM injections daily, all against my will. I was heavily sedated for many, many years, and there is a large portion of my time in hospital that I simply can not remember due to the effects that the medication had on my brain.

Due to my personality disorder diagnosis, I was placed into a long-term secure rehabilitation unit, specifically for females with a personality disorder. I did not belong there, but due to the misdiagnosis years previous and with my not responding to conventional treatment, I was admitted there against my and my family's desperate pleas. Again, restraint was used against me many times, often due to an autistic meltdown. The constant alarms going off within the unit, the very noisy environment and with no reasonable adjustments it was the perfect cocktail for my meltdowns. It was a scary place to be. I was incredibly lucky to have a supportive family that fought to get me out of the secure unit and back home to an environment that was better suited to my needs.

I often wonder what my life would have been like if I had received a correct diagnosis on that initial meeting with the psychologist. Would I have spent most of my 20s in and out of psychiatric hospitals? Would I have spent time in a secure rehabilitation unit for people with a personality disorder? Would I have endured more trauma from restraint holds? Would I have spent Christmas in a PICU? And the honest answer I give myself is no, probably not.

It was in 2020, at the height of the pandemic, that I was diagnosed as autistic. My life finally made complete sense to me, and the vicious cycle of hospital admissions became less and less as I began to learn more about my triggers.

It was only earlier this year, after 14 years of receiving the initial personality disorder diagnosis, that I was reassessed correctly, and I did not meet the criteria for diagnosis. It was clear to me that I did not have BPD, but to finally have it written down on paper was a huge relief. My trauma was also recognised, and I was diagnosed with Post Traumatic Stress Disorder with complex trauma.

Mental Health Awareness Day is for one day of the year, but this simply is not enough. Those who live with mental illness, like myself, live with our illnesses day in and day out. More needs to be done to support neurodivergent people who live with co-occurring mental illness. Conventional therapy isn't the correct treatment for autistic people. It was only since accessing autism-affirming therapy through the Autism Wellbeing Project that my life truly transformed. I am no longer just existing; I am living, and I am thriving due to the support I have in place.

A note to therapists when working with autistic clients: Please look into further training to ensure you are meeting the needs of all your clients. Remain curious about what is going on for your client, and please do not allow our voices to be silenced by ways you believe we should respond to treatment.