Blog
As part of the I-RAP study, I find it both useful and validating to see information emerging about how many people might be having experiences similar to mine. I wanted to write this to share what it feels like to navigate the world with a stigmatising label, not knowing you’re autistic. This impacts how you see yourself, how others perceive you, and the narratives this creates.
Earlier Years
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In primary school, I was often called bossy for trying to structure play. This likely stemmed from a need for order in a chaotic playground. I struggled socially, and school reports highlighted my "strong sense of justice”—something I later referenced in my autism assessment. My experiences with bullying weren’t overtly violent or prolonged, but peers often reacted negatively to my perceived "weirdness."
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In secondary school, I was dysregulated, unhappy, and moody. Teachers scolded my peers for comforting me when I cried, staff rolled their eyes at me, and my distress went unacknowledged. PE lessons were particularly challenging: the loud, chaotic changing rooms and unstructured outdoor activities were overwhelming. A school nurse suggested I was experiencing "psychogenic, non-epileptic seizures" and referred me to CAMHS. I now understand these episodes as autistic shutdowns—a state of overwhelm where the brain can’t process more.
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CAMHS diagnosed me with dysthymia and offered Cognitive Analytic Therapy (CAT). At the time, CAT didn’t work for me as an undiagnosed autistic person. It seemed to reinforce the narrative that I was overly emotional and needed to control my moods. Reflecting now, I see how much of my distress was due to autistic dysregulation—difficulty predicting events, navigating social dynamics, and masking all day. Staff interpreted this as me creating drama or being too sensitive, which created a barrier to empathy and understanding.
Finding My Diagnosis
I discovered I had been diagnosed with borderline personality disorder (BPD) by accident at a GP appointment when I was 21. The doctor mentioned it while seeking advice from a colleague, and I was left to Google the term. It turned out BPD had been on my record since I was 16, added by a CAMHS psychiatrist who decided not to inform me.
That evening, reading the BPD diagnostic criteria felt like a revelation. Phrases like "unstable mood," "intense relationships," and "unstable sense of self" seemed to explain everything I was experiencing. This new label dominated my understanding of myself, overshadowing other potential explanations like autism.
When I was 22, a second psychiatrist re-confirmed the BPD diagnosis. However, the assessment didn’t account for my living situation at the time: I was in a controlling environment that significantly impacted my mental health. This context was overlooked, further entrenching the narrative of BPD.
Carrying the Stigma
After leaving my precarious living situation, I moved into temporary and then supported accommodation. The staff in temporary housing lacked mental health training and held negative views about personality disorders, which affected their support for me. While supported accommodation offered some stability, it was specific to those in mental health services, leaving me questioning what my housing options would have been if I had been diagnosed autistic instead.
During this period, my CMHT provided limited support. The stigma surrounding BPD persisted among professionals, affecting how I was treated. This environment made it challenging to rebuild my self-esteem.
Recovery and Reassessment
I eventually joined an emotional regulation skills group, which introduced tools from dialectical behavioural therapy (DBT) and cognitive behavioural therapy (CBT). This group was invaluable, teaching me strategies for managing emotions and building resilience. I still use some of these tools today, such as maintaining a wellbeing box with sensory items and reflective worksheets inside it.
After completing the skills group, I moved onto trauma-focused therapy. My therapist diagnosed me with Complex PTSD (C-PTSD), attributing my symptoms to past traumas rather than BPD. This shift allowed me to begin reframing my experiences. However, it became clear that much of my distress stemmed from being an undiagnosed autistic person in a world that didn’t accommodate me.
Recognising Autism
During my second attempt at university, I began to realise I might be autistic. This awareness grew during the 2020 lockdown when I started engaging in stimming behaviours—self-regulatory actions common among autistic people. Initially, I thought these behaviours were new, but they were actually a reduction in masking due to increased fatigue and chronic pain.
Friends and peers—many of whom were autistic—began to point out traits they saw in me. At first, I resisted the label, wary of accepting another diagnosis imposed by others. But over time, I re-examined my memories through the lens of sensory and communication differences. Autism is not a mental illness; it’s a neurotype. Accepting this shifted my perspective and allowed me to understand myself more fully.
Eventually, I sought a formal autism diagnosis through the Right To Choose pathway. Knowing that trauma can complicate autism assessments, I chose a practitioner experienced in both areas. This diagnosis has been life-changing, providing a clearer understanding of my identity and needs.
Moving Forward
Since my autism diagnosis, I’ve embraced my neurodivergence and adapted my life accordingly. I’ve transitioned from mental health-focused work to exploring queer neurodivergence, incorporating creative workshops into my practice. Recognising and accepting my autistic identity has been a liberating process, enabling me to navigate the world with greater authenticity.
Understanding my experiences as both autistic and someone who carried the BPD label has been complex but empowering. It’s a reminder of the importance of accurate, compassionate diagnoses and the profound impact they have on our self-perception, as well as how they shape the way we navigate the world and seek support.