I’ve always known that I’m different. At school I remember a teacher shouting at me because I’m ‘not of this world!’ And she’s right. I’m a spectator looking in.
As a baby I cried constantly, 24 hours a day. My mother was exhausted, stressed beyond belief and it’s why I’m an only child. I did not have a language delay which is the main red flag for autism. In fact, I had a large vocabulary and was speaking in sentences by 12 months old. My mum thought that this must just indicate I was bright. I also had no problems learning to read or with self help skills. However, I hated nursery. My mum tried numerous times to make me go but I was kicking and screaming the entire time. I hated the unfamiliar smells and bitten plastic cups that I was expected to drink out of. Eventually she stopped taking me. When I started school, things were much the same. Except this time there wasn’t the choice for me not to go. So I just cried every day in reception and my classmates would offer me toys in exchange for me to stop. I panicked about all sorts of things that wouldn’t bother most children. And I had chronic emetophobia.
I’ve lived my entire life feeling that I just don’t fit. Rather than knowing I had a disability it felt like I couldn’t get anything right. Everything I do is out of sync with the neurotypical population. I don’t communicate properly with people. I need to hide in the house. Anyone coming to my house feels like a violation even though I WANT to see them. It is really not that I don’t like people. I’ve always done unusual things or experienced unusual thoughts which I keep to myself because ‘normal people don’t do / think that’.
Although I have a daughter with Autism, it never occurred to me that I myself might be autistic except for a friend of mine. He apparently knew I was autistic when I was admitted to a psychiatric ward with my youngest daughter when she was only a few weeks old. I had been having a bad few years of abusive relationships, self harming, little sleep and chaotic thoughts. I had various different psychiatrists try to work out what was going on. Some of them thought I had Borderline Personality Disorder and others that I had bipolar disorder. I ended up being labelled with both. Then I was stuck on Seroquel which just made me feel excessively tired. The time I had in the psychiatric ward was helpful. It was quiet, nobody could hurt me or shout me. I had a room with a label which said ‘Helen & Isabella’. The days ran according to a set routine. The food was very nice. I fed my baby, rocked her to sleep and read books. I didn’t have to do any adulting. The staff noted that I was a good and capable parent. They were not concerned about my children.
Later, when I got out I found a psychotherapist who worked with me for about 2 years. She was wonderful, and helped me to stop self harming. But I could never easily discuss my feelings because I can’t identify them very well. This is a condition known as Alexithymia which is common in autistic people.
The wrong diagnoses that I received have caused fractious relations and tensions with my parents because various professionals have tried to blame them for my difficulties. The final straw was when I discovered that one psychiatrist had written a report which stated that I must have been sexually abused as a child because of my passivity and inability to assert myself in relationships, and my ongoing pattern of abusive relationships. It was at this point that I decided the truth needed to be discovered because I knew that I had not been sexually abused. Something here was entirely wrong.
The fact is that Autism can present very differently in women from how it looks in men. A woman’s special interests can be typical of others but differ in their intensity.
When I was finally assessed, using the ADOS I knew without question that I was autistic. The test showed me why. The psychologist gave me a book with no words in at all. She asked me to construct a narrative. I couldn’t do it. I was preoccupied with the strange pictures and not being able to understand them.
l was asked some questions:
’Why do people get married?’
Because society expects it. People are expected to live in happy couples.
‘What scares you?’
The concept of infinity. The idea that everything goes on and on and on – it makes me panic. I can’t deal with it.
These were not neurotypical responses. I saw with clarity that my brain is wired differently. It was a relief. I am not the only person in the world who is like this. I just have Autism.
When I look back on my life now, it’s much more possible to make sense of the things that I didn’t understand before. My failure at healthy relationships has to do with the fact that I don’t choose a partner based upon sensible, neurotypical criteria. My ideas about who I should be with are based more upon whether I like the smell of them, or the words they use or the firmness of their touch. I can’t stand light touch. It’s enough to explode a lightbulb in my brain. If someone uses a turn of phrase that irritates me I will end a relationship over it. Not exactly reasonable but once my desire is gone, it’s gone.
Rudy Simone’s book, ‘Aspergirls’ is a great read for any woman on the autistic spectrum. It raises some of the issues which people don’t typically associate with Autism and that are quite specific to women. It can really be very damaging to receive the wrong diagnosis. One example of this in my case is that I find SSRI medication very helpful for my anxiety but no doctor would let me have it whilst I had the wrongly applied bipolar label.
If I had known from a young age that I was autistic then I do believe that my life would have been better and I could better have understood myself instead of feeling continual shame that I fail at everything. My parents are a little more patient with me these days and I think they also feel better knowing they are no longer blamed for my difficulties. I also realised that in my baby / childhood photos I hardly ever looked at the camera – go figure. The signs were all there from the very beginning.