I decided that I had autism. Is that it? Can I just do that? The description of women with autism sounded like me. The women online who were sharing their experiences were different from the traditional, no eye contact, no empathy, mathematic loving, male version of autism but something that sounded more like my own experience.
I wondered if that was it. I could just decide I had it.
I spent hours checking that my hunch was right, I read and reread the descriptions online, to check that I hadn't made a mistake. Like when you have the flu then you check the symptoms and decide you have malaria or cancer.
I knew I was right, it just seemed to click. I wasn't worried. Just interested. I was pretty sure it wasn't malaria.
I was very excited to finally figure myself out. I wanted to tell people because I had finally understood my difficulties. Yet at the same time, I felt cautious. Would this change the way people saw me and what they thought of me?
I knew that my GP wouldn't believe me when I said I had autism. I had read that other women had problems so I found a way around it. You could self-refer to adult services. So I did.
I wanted to tell people the new changes in my life. I arranged a meeting with a friend and announced that I had autism. High functioning of course, probably Aspergers Syndrome. I explained the symptoms. My friend tried to make me feel better by saying that she felt similar in some ways. This made me feel confused.
I told another group of friends. They told me I didn't have it. I stopped telling people. I knew they were only being kind but it upset me. It was like they didn't trust my opinion and insight into my life.
There were several months to wait until a preliminary screening was available. The day of the screening appointment arrived. I was terrified. Suddenly I worried I had made a mistake or more likely that they wouldn't understand. Would they know that women are different to men? Would they see my struggles under the 'act'? Would they be aware that people on the spectrum can be funny, warm and friendly? Outgoing even?
At first, I struggled with the questions. Did I have an imagination? Did I take things literally? I was asked if I understood the phrase 'pull up your socks.' I said, "yes, like pull yourself together, work harder." Oh no. I understood it wasn't literally to put your socks on. I can't be autistic. Then I was asked if I thought of socks when the phrase was said. Oh yes. I had. I had the thought of socks first and then the translation. It wasn't a split second thing. I had been translating the meaning.
The sensory part of the interview was huge. I answered the questions with hundreds of examples. From daylight hurting my eyes to hand dryers hurting my ears. The person doing the interview said that much of what I had described had been exactly the same as other people even down to the exact wording. I then explained the moments of being misunderstood. Even the people who said they thought I didn't like them. I couldn't understand where they had got that idea from.
After the screening, I was put forward for the full diagnosis. I was happy I was believed and understood but the appointment was another year away. The wait was agony. I called a few times to check that I had moved up the waiting list and soon my time came.
On the day of the appointment, I waited at home as instructed. I had been cleaning the house for a full 24 hours when the time of the appointment came. The man didn't arrive. There had been a double booking. He was later very apologetic on the phone and rebooked.
The appointment was in a weeks time and it was like an eternity. The man arrived but due to the volume of questions it was done over two weeks and lasted roughly three and a half hours. Many of the questions I found difficult. I couldn't remember what I was like at three or even seven years old when I learnt certain things or even what I did now. Did I point? Shake my head? Some questions were a massive yes with loads of examples. Others were much more difficult.
I had heard that since 2013 that Aspergers Syndrome wasn't diagnosed anymore. The man explained that if I had the condition that the letter would say I had an 'autistic spectrum condition, formerly known as Aspergers Syndrome." I felt like Prince. I had never been formally known as anything.
I asked the man to send me the diagnosis before the report. I couldn't wait any longer. He did. The letter read that I had an autistic spectrum disorder.
Finally, I am what I always thought I was. I have a condition formerly know as something else. I am
something else but I haven't changed at all.