Autism: My journey to diagnosis
I’m autistic. I still stumble every time I say it.
A friend of mine who has known he is autistic for years has recently begun teaching me the difference between saying I am autistic, and I have autism. The latter suggests my autism is something wrong that needs to be fixed; the former reminds me that it’s just part of me, one that doesn’t need to be fixed or changed. I’m just fine the way I am.
I’m one of the 0.2% of women in England on the spectrum. It isn’t surprising that it took years to get a diagnosis.
According to The National Autistic Society, many women and girls are never referred, as we are often able to imitate social cues, masking the problems we have in recognising them in the first place. I had never considered the possibility of being autistic before university. I had always been a shy, quiet child. I preferred to be socially-adjacent; wanting to join in and play, but not quite sure how.
During my first year of university, one lecturer tactfully tried asking if I needed any extra assistance or help getting to know my coursemates. It wasn’t until a friend told me he was autistic and he thought I shared a lot of the same traits that I thought to look into it. The more I read, the more it sounded like me. Things that had been dismissed as just the typical shy behaviour of a quiet child, then teen, then adult. Still, I hesitated. What if I was just over reading into things? I first went to my mum. A mental health nurse, I thought that if anyone would know, she would. Surprisingly, a lot of things just seemed to click into place for both of us. She agreed it sounded just like me, and was surprised she hadn’t thought of it sooner.
In 2011 together with my mum I approached our long-time GP with information I’d found on the NHS website, and how I met the criteria. She agreed completely, but didn’t know any way for an adult to be diagnosed through the NHS and wasn’t sure if there would be any benefit now I was in my 20s.
Trying to verbalise why knowing, one way or the other, if I was autistic, was one of the hardest things I’ve done. Inside, I knew exactly why. I just couldn’t translate those feelings into words.
It took me a while, but once I was able to write down the main reasons why, my GP agreed to look into it. Around 6-8 months passed without any news. Just before the year mark, she found a potential solution, and passed along a number for us to call. Unfortunately, the practice had closed months earlier. The only alternative my GP could suggest was going private. As a recent graduate mere months into an internship, there was no way I could afford the £500+ I was quoted. Over two years since the start of my search, and I couldn’t see a way to move forward. There was no NHS pathway for adults in my area, and I couldn’t afford to go private. There was nothing more I could do.
A year later, my GP contacted me. A new clinical pathway had become available. She warned it could be a long, slow process, but if I provided a letter explaining why a diagnosis would be beneficial, and my reasons were deemed suitable, I could join the waiting list.
18 months later, I finally received a letter for an appointment. It was late 2016, almost 5 years since I first went to my GP.
Along with my appointment, there were several questionnaires for myself and a close relative to complete. Many of the questions were clearly aimed at children rather than adults, focusing on early development. The assessment itself took just three hours with a psychologist whose expertise lay in autism. By the end of our single session, she was able to tell me that she believed I fell on the spectrum, but I would have to wait another four to six weeks for the official written diagnosis. After almost 5 years of chasing, I felt pretty numb.
It didn't really sink in for weeks. It’s a big relief to finally know some things aren’t my fault; I’m not just shy or awkward or not trying hard enough. It hasn’t fixed things, but it has helped lessen my own feelings of frustration with myself.
If you or someone you know is looking for a diagnosis for autism as an adult, the best advice I could give you is to be patient. There may be a quick, clear path for assessment where you live, but you should be prepared for a long, slow, emotional process. All I can say is don’t give up; it’s worth it in the end.