This is an insight into my journey towards a formal diagnosis of Autism Spectrum Disorder, which I received in December 2019. Although this is only one example of a route taken to get a diagnosis, I hope that some readers may find it useful to see how I went about it!
Although I was diagnosed late last year, my quest for a diagnosis actually started almost 18 months before this. I had a very surprising conversation with a close friend who admitted that they were autistic and we discussed some of the ways in which this affected them. This was the first time I had ever noticed similarities between my experiences and another person’s, and I was extremely relieved to discover that I was not alone. However, at this time I did not know any other young women who were openly autistic, and some research into diagnoses brought up the issues around difficulties in recognising autism in girls and women.
The First Small Steps
After some further research and lots of deliberation I decided that I did want to pursue this further and I arranged a meeting with the support staff at my university to ask for advice on how to proceed. This resulted in an additional meeting with a Disability Adviser, followed by a super informative and enlightening visit to one of the One Stop Shop Centres for Scottish Autism to discuss the process of a formal diagnosis. I was incredibly nervous at the prospect of not being taken seriously, or not being “autistic enough” to get a diagnosis, but I was never met with any disbelief and the university staff were incredibly supportive of my decision.
I then booked an appointment with my local GP to ask them to refer me to a clinical psychologist for a formal diagnosis. Fortunately, the doctor agreed to refer me, although I waited just over a year before finally receiving an appointment with a psychologist. Part of my assessment included filling out two questionnaires; the Autistic Spectrum Quotient (AQ), and the Empathising Quotient (EQ), which were created by Simon Baren-Cohen and Sally Wheelwright. These are commonly used as a way to quantify autistic behaviours and identify people who meet the criteria to be diagnosed. These scores combined with questionnaires filled out by my family and close friends and meetings with the psychologist all resulted in my formal diagnosis of Autism Spectrum Disorder.
Based on my experiences, my advice to anyone searching for an autism diagnosis is:
- Do some research into the diagnosis process in your area and who to contact
- Make lists of any symptoms or difficulties you believe are linked to autism before meeting with any professionals
- If you can, talk to friends and family for support and also for any signs they may have noticed during in the past or present
- Do not expect this process to be quick, especially if you are seeking a diagnosis as an adult
Do I Have Any Regrets?
Although it took 18 months (well, technically 21 years) for my diagnosis, I do not regret my decision at all. Being able to explain why I live, think and cope so differently from other people has taken so much pressure off my shoulders. I am much happier and more secure in myself now that I know what makes me different, and I am very proud to be autistic. Our way of thinking is so unique and beautiful and complicated, I can’t imagine viewing the world in any other way. I hope that my story will encourage someone to seek a diagnosis for autism or for anything else which may be affecting you, as long as you believe this will help you in some way.
I know that being autistic comes with many struggles, but receiving a diagnosis is One Small Step step towards helping yourself.