On the 3rd November 2020 I underwent an Autism Spectrum Condition assessment. A few weeks later I received a letter confirming that based on standarised measures and structured behavioural observation, I met the criteria for a primary diagnosis of Autism Spectrum Condition.
I was 20 years old.
When I initially received my diagnosis I experienced a very common phenomena for people who have been diagnosed with ASD – a moment of realisation. All of a sudden my mind began to make sense of all the situations and difficulties I had faced growing up that just seemed ‘off’. Coming up to three years later, I am still processing what my diagnosis means for my past, present and future.
My past
Although I was diagnosed at 20 years old, I was born with autism. ASD has permeated every aspect of my life regardless of whether I had a diagnosis or the relevant knowledge to understand its impact.
For me, one of the biggest tasks post-diagnosis has been making sense of my past experiences, specifically my time at secondary school and in higher education, with the knowledge I now have. As tends to be the case with most autistic people, I experienced relentless bullying whilst navigating my teenage years. This, combined with a lack of pastoral and educational support, reduced my school experience to a case of surviving, rather than thriving. As a result, I fought with various mental health issues – anxiety, depression and an eating disorder – mental health conditions which similar to my ASD went undiagnosed and untreated for years longer than they should have. At the time I struggled to make sense of why I was experiencing these things, and why I felt so overwhelmed. Looking back now it is clear to me that being autistic had a part to play in my deteriorating mental health. But to be clear, my autism never caused my mental health disorders. The bullying I received as a result of being different, combined with the general difficulties autistic people face in navigating a neurotypical world, and the lack of support and compassion around me, caused my mental health problems. And I am not an anomaly. Autistica, a research charity focused on autism, estimates that 7 out of 10 autistic people have a mental health condition. Furthermore, autistic women are 13 times more likely than non-autistic women to die by suicide (Royal College of Psychiatrists, 2021). These statistics are harrowing, but a true reflection of a hidden crisis ASD people are facing nationally.
My present
To this day I am still learning what it means to be an ASD adult in a world not designed for me. Autism is an incredibly unique and personal thing, and no two autistic people are the same. We all have our own difficulties and more importantly our own strengths. Every day I discover more about myself and more about what it means to be autistic. Before I never understood myself and I could never make sense of my feelings. With my diagnosis and the power that comes with that knowledge, I can now make sense of why I feel the way I do. And as a result, I can meet my needs better and communicate them to others. I know when to set boundaries and I know when to rest. And that didn’t happen overnight. It took years of hard work in therapy – experimenting with psychoeducation, integrative therapy and mindfulness. Having a non-judgmental space to talk openly about my thoughts and feelings made a significant change to my mental health and more generally, my understanding of reality. Everyone deserves to have a space to talk about what’s on their mind, but this is especially true for autistic people. In a world which seems upside down, surrounded by people speaking an entirely different language, counselling can provide us with an hour to just take a deep breath, slow down and exist without judgement and ostracisation.
My future
So what’s next for me and for my future? Honestly, I have no idea. No one can ever know what their next chapter will look like. Regardless of where life takes me next, therapy has taught me that as an autistic person I have the capability to not only survive it, but thrive.
If you think you or someone you know may be on the spectrum, the first thing is often to consider obtaining a diagnosis. In fact in order to open up the provision of care that is available, this can often be essential. There are many online tests that may give some indication, but these are by their nature non diagnostic.
Non Diagnostic Autism Assessment: https://www.hopefulminds.co.uk/autism-self-assessment/