"A Recent Autism Referral"

Throughout my whole life, I've struggled every day with many symptoms of autism. It has been noticed by adults around me- including my mother- but due to family issues, I was never tested as a child. As I grew older and started to ask those around me if they thought I could be autistic (including family members, teachers and friends), the answer was always a resounding yes. My AQ-10 score is 10/10, and I experience all except one of symptoms listed on the NHS website as signs of autism in adults.

 Now that I've moved out and am at university, and after years of researching autism, particularly in adult women, I decided to finally reach out for help. I have written a notebook, filled with my personal experiences of autism and all of my symptoms and how they impact me daily. I called my GP Practice who arranged an out-of-hours telephone appointment for the following Saturday.

My experience started out on a bad note, as I waited the entirety of Saturday for a phone call that never came, and then again on Sunday, hoping I had misheard the date of my appointment, even though I had written it down. I can.t explain how paralysed with anxiety I felt, I physically couldn't move from my desk, waiting next to my phone for a call, despite having lots of other things I needed to do.

I called the Practice on Monday morning when they opened, and the receptionist explained to me that it was done by a contracted company and that someone had probably forgotten, but she could arrange a telephone appointment with a GP for that week. I was incredibly thankful and was looking forward to finally getting to speak to someone after years of struggling.

When the GP called me, I could tell straight away that they wanted the phone call to be over as quickly as possible. They asked me why I was calling and when I began to explain that I think I'm autistic, they cut me off, saying very shortly that I am 19. I then tried to explain that while I hadn't been diagnosed as a child, symptoms have been present from a very young age, and my older brother also wasn't diagnosed until adulthood. The GP cut me off again, saying that they think I'm just shy. I hadn't mentioned anything about me being shy.

At this point I was starting to get very upset- I had been waiting for so long to get help and now I was being shut down. I again tried to explain to this person that my issues go much further than just being socially anxious/shy but I knew they weren't listening. They asked if I had ever had a boyfriend, and when I said yes they said "Well then", as if that was the one defining factor of whether or not I was autistic. They then proceeded to ask me more very limited questions, at one point they even said they were going to reword a question and ask me again because they thought my answer "wasn't right". 

This GP didn't give me a chance at all to explain my situation or symptoms and was very hasty in deciding that I couldn't be autistic because I hadn't been diagnosed as a child and went to university. I had to keep repeating myself because they weren't listening to me and every time I said something they immediately shut me down. After only five minutes of being on the phone to me and cutting me off the entire time, they said they were going to refer me to mental health services for social anxiety. 

I stood my ground and explained no, I know social anxiety isn't the root issue and I wanted to be referred for ASD. They agreed to refer me but said that they really don't think I'm autistic. I was frustrated because this person hadn't allowed me to speak about my symptoms or let me explain how much it impacts my everyday life at all. 

The conversation lasted 7 minutes in total.

After getting off the phone I cried for hours, I felt completely ignored and disregarded, and I had no idea how to move forward.

I got a letter today telling me that my referral had been rejected, which I was deeply hurt about but not surprised given the rush the GP had been in to diagnose me with social anxiety. I also received another phone call from the same doctor today telling me that I should self-refer for social anxiety. They told me one of the reasons I hadn't been referred for autism is because I had never failed a class in school. 

With all the research I've done into autism, I know there are many stigmas around what autism looks like, who can have autism and how autistic people act. I know that adult women find it particularly hard to get diagnosed and are frequently not taken seriously when asked about their symptoms and struggles. It's upsetting that this experience of going undiagnosed or refused treatment is so widespread, and while I knew this before going into my appointment, it's still incredibly disheartening to experience first hand. 

I want to make it known that I am incredibly grateful for the NHS and I don't know where I would be without free healthcare. However I feel incredibly let down by this experience and feel like my issues were brushed off before I even got a chance to share them.