Throughout my life, I’ve always felt that I was different. A square peg in a round hole. Someone without a place. At school, in work, and – more recently – with my mental health diagnosis, too.
In 2020, after living with borderline personality disorder (BPD) for four years, I was told that I’d been misdiagnosed and that I’m actually autistic. And so my journey to understanding myself started again.
I’ve never fitted in. I’ve always been called ‘weird’ or ‘odd’ or ‘quirky’, but not in a good way. It started at school and continued until I got my first job. Work was difficult because the sector I went into was fast-paced and pretty cut-throat – I was neither of these things. Working quickly made my brain shutdown. Understanding instructions for five different clients at one time led me to meltdown. Ruthless people made me cry. I was even asked, ‘Do you think this is the career for you?’ Which felt like acknowledgement that, yet again, I didn’t fit in and that meant I was a failure.
Work continued to be a struggle and I ended up going from job-to-job not fitting in, not coping with the environment or not being able to do the work on time. All the while, my mental health was in rapid decline. I was crying in the toilets at work and I was always on edge, wondering if that day would be the one where I’d get fired. Despite hiding my struggles under a thick layer of enthusiasm and excessive working, I still didn’t fit the professional mold I was supposed to.
In September 2017, I had a mental breakdown which shocked my fiancé. He rang the GP and took me straight for an emergency appointment. The GP was kind and referred me to a psychiatrist. In October 2017, I was diagnosed with borderline personality disorder (BPD). I wasn’t sure what BPD was but from what the psychiatrist said, it explained my behaviour – unstable moods and not really knowing how to handle the whirlwind that was my emotions. Everything started to make sense. I felt like I was on the way to understanding the square peg in me.
“Everything started to make sense. I felt like I was on the way to understanding the square peg in me”
I’ve been seeing a counsellor since September 2010, and initially went because I couldn’t stop crying. Talking to her over the years has really helped me to navigate difficult situations and emotions. During this time, my counsellor questioned the BPD diagnosis and mentioned that I might be autistic instead. This came as a surprise as a medical professional had officially diagnosed me and surely, she couldn’t be wrong? My counsellor suggested I have a private autism assessment, so I took her advice and booked it. The assessment happened across two long sessions, and then a session with my mum and sister.
When the psychologist called with the result, I was so anxious. She broke the news that I wasn’t autistic because I didn’t fit the criteria. She wouldn’t provide further explanation and when questioned, said that her findings were final. I felt so dismissed and deflated. I really thought that this would provide me with an answer for my square peg-ness. After a lot of crying, I decided to leave it in the past and not to pursue it any further.
In April 2020, during the first lockdown, I was struggling with my BPD. My moods were erratic, the crying had started again, and I was feeling really overwhelmed and burnt out. I reached out to local mental health services but because of how stretched these teams are, they said they couldn’t help. They also said I wasn’t a danger to myself so wouldn’t warrant help. My GP said she wasn’t happy with the response so re-referred me. I had to keep chasing them in order to find out what was going on. In August 2020, they finally assigned a counsellor to me and I spoke to her for a period of six weeks. Both she and I continued to be persistent and managed to get an appointment with a psychiatrist in November 2020.
The appointment took place over Zoom. I find video calls overwhelming at the best of times, but this was a whole new level of anxiety. I kept thinking this was my one and only chance to be seen and heard as someone who was struggling.
We chatted for around an hour, and near the end of the appointment the psychiatrist said, “I think you’ve been misdiagnosed and I’m 99% sure you’re autistic, and always have been.”
I went from having a stigmatised mental illness and the negativity surrounding that, to being neurodiverse and having nothing ‘wrong’ with me.
The psychiatrist praised my persistence and said I needed to self-refer to the local NHS autism service for an assessment. 24 pages later, I submitted the form. Like waiting on a job interview, I anxiously waited to see if I’d been accepted. In December 2020, the letter came to confirm I was on the list for assessment.
“The road to this has been a long and difficult one and, when speaking to other women my age, they say it was the same story for them”
The road to this has been a long and difficult one and, when speaking to other women my age, they say it was the same story for them: being diagnosed as having BPD but actually being autistic. Many of these women, because it’s so difficult to get a formal diagnosis, self-diagnose and identify as autistic that way. And that’s what I’m doing until my assessment.
If you think you might be autistic, I’d recommend a book called I Think I Might Be Autistic by Cynthia Kim. It’s a practical book where you can go through and tick off the traits and behaviours that sound like you. You can then use this when contacting your GP and asking about having an autism assessment. Before speaking to my GP, I wrote down the traits/behaviours that affected me the most. For example, difficulty with executive functioning (following instructions, processes), not knowing how I feel, and special interests that turn into obsessions if not closely monitored.
When chatting to them, ask about how you can access an autism assessment. Different health boards in the UK have different processes so it’s always good to check what your local area provides. The waiting lists can be long, but, once you’re on them, it’s worth it. You can also go down the private assessment route, but it can be quite costly – or there is the Lorna Wing Centre in England, which specialises in female autism assessments.
I would recommend, while waiting for your assessment, to talk to a counsellor. Verbalising how you feel can be really helpful in the lead up to the assessment. It can help you to understand how you’re feeling and the things you need to tell the assessor about when the time comes.
Since my misdiagnosis, I’ve felt in limbo. I’ve felt more of a square peg than I ever have before. People have told me that “labels don’t matter”, and that “you’re not your diagnosis”, but I am. It’s part of me. It’s part of my identity. But, thanks to being so persistent, I’m on the road to getting to know myself better. It’s empowering to know that there’s nothing ‘wrong’ with me and that I just think differently.
I might forever be a square peg in a round hole but going through this experience has helped me realise that it’s OK. It’s OK to be different and stand out instead of being like everyone else and disappearing into a sea of ‘normality’.
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