I’ll be 45 at the end of this month and, two week ago, I was diagnosed with Asperger Syndrome. I’m still trying to wrap my head around it. I’ve spent 44, very nearly 45, years of my life walking round knowing that I saw the world differently to a lot of people, I knew that I was different. I just didn’t realise that I was autistic. It really is quite the mindscrew.
After the clinical psychologist put Moo on the NHS waiting list for an ASD assessment, she suggested that I read the Complete Guide to Asperger Syndrome. I read half of it before lending it to someone who needed it more. Alas, I can’t remember who that is so have lost the book. That’s by the by. While reading it, I started to recognise behaviours that I see in my father and some that I share with him. He has not been formally evaluated nor diagnosed. In the book, it refers to girls with Asperger’s being far harder to identify so I started reading books on girls with Asperger’s specifically. That’s when dominos started to fall in my head. The more I read, the more I recognised myself. There are traits listed in the back of most books. The most detailed list is in the back of I am AspienWoman. The table has 238 traits listed. I identified with 167 of them, 70%. So I went to the GP and asked for a referral. Apparently, the most common cause for self referral is a parent having a child diagnosed and realising they have the same traits. At this point, I thought that I would be borderline.
Now the NHS is overly subscribed and there are waiting lists for everything. If you want to get an assessment for anything, you have to jump through hoops. So needless to say, my GP quizzed me as to why I thought I had it. I listed the reasons and halfway through, he just said, “I’ll refer you”. Then I got a load of paperwork through with a million questions. I answered them all. Clearly, my paperwork raised red flags because I got offered an assessment which consists of three appointments, 1.5 to 2 hours long, where you are grilled in the kindest way possible. I cried a lot. I went into my first assessment physically shaking because I would have to talk about stuff that I have never talked to anyone about, ever. I still thought I was borderline. The assessor got to the end of the second session and she was convinced that I was nowhere near borderline, I am a full blown Aspie. I happen to be a very lucky one.
The reasons that it wasn’t picked up are several but the main one is my gender. Girls are far more driven to fit in, to connect with their fellow humans. They pay attention, mimic and learn to behave in ways that, although not perfect, mean that their difficulties are far harder to see. Also, like my father and my daughter, I have what is called a high social drive. Basically, we love being with people, even when social communication is confusing for us. My circumstances meant that I had a guide pretty much from when I was 4 months old. My cousin, Dominique, and I grew up together and were inseparable. She is a loud, gregarious character who often spoke for both of us. I then went to boarding school where it was easy for me to retreat into the library or my bedroom when I was feeling overwhelmed. My love of books and films pretty much provided me with the perfect escape everywhere I went.
So why am I telling you all this? Well, because I am not ashamed of it. I sought a diagnosis because I wanted to know. The label does not make me an Aspie, it does not define me. I would be an Aspie if I had a diagnosis or not. However, the thing that that label does is it explains a lot about me. It explains why I am never really sure if I am friends with someone unless they give me a gift, whether it be inviting me for dinner or a physical gift, or if they have stuck around in my life for a really long time. (Gifts are literally the cues in my life that people care. I am not materialistic, it’s just a language that I understand easily.) It explains why I have such dreadful auditory processing, why I avoid the telephone like the plague (I, literally, do not call anyone, ever). It explains why I avoid eye contact (although few people pick up on it because I lip read to help my ears and my eyes are so dark people can’t tell where my pupils are looking). It explains why I am so sensitive to light, dark and sound. It explains why I have such a hard time keeping in touch with people, I really can’t do it, why I find it so hard to initiate conversations (yes, you read that right. It is possible to be talkative, riddled with social anxiety and still not know how to do small talk). It explains why I am so loud, so full on in social situations and talk so fast. It explains why I am so rational, analytical and logical about everything, why I find it so hard to empathise with people who feel differently to me, yet empathise so deeply when I can. It explains my rigid thinking, I’m so black and white. It explains why I am so honest and, at times, blunt. It explains why I do take things literally and will never understand why people say horrible things just because they are angry then say that they didn’t mean it (why say something you don’t mean?). It explains why when I get really upset, I shut down (the amount of times I got accused of sulking as a child when I was in shutdown). It explains my obsessive nature and why I compulsively correct my poor mother and sister’s English. It explains my hyper focus and my ability to creatively problem solve. It explains my high intelligence and my relatively low academic achievements. It explains my synaesthesia and my misophonia, my depression and my anxiety. It explains why I can’t read subtle emotions on people’s faces, or label the ones that I am feeling. It explains my life long fascination with what makes people tick. It explains my profound sense of social equality and justice, my deep love for animals. It explains why I have never identified with the feminine even though I am definitely a woman.
I have missed out because of my Asperger’s. I missed a brilliant career opportunity because I misread my boss. I thought he was taking the piss, not giving me the chance of a lifetime. I have lost friends because they condemned me for not keeping in touch, even when I explained that I was trying really hard for me.
But I would not change a thing. I have a wonderful life. I have friends and family who accept me for who I really am, who know that I love them deeply, even if they haven’t heard from me for years. Social media is a godsend for people like me. We can keep in touch with so many without having to initiate the conversation.
I wouldn’t be where I am now if it wasn’t for my autism so I am so very grateful for it. My diagnosis has brought me peace. It means that I don’t have to maintain that exhausting social persona that I put on like a coat when I go out. It means that I inherently understand my daughter even though we have some different traits from the spectrum.
So, yeah, I have Asperger’s. I am autistic. I have absolutely no problem with that. Technically, it means that I have an invisible disability but I don’t feel disabled by it. My brain was my favourite part of my body before my diagnosis and it is still my favourite part of my body after my diagnosis. Nothing has changed. I think the more people share their stories, the more they educate. The more education, the more acceptance and that is a good thing for everybody, neurotypical or not.