First of all, I need to apologise for taking so long to post this. I hope once you have read through this post, you will understand why, and forgive me. The timing finally feels right to share my story now, what with it being Autism Awareness/Acceptance month. For the longest time I couldn’t write about it as my thoughts and emotions were swirling all over the place, and then it got to the point where it had been so long, that even getting started became almost impossible. But finally, this is my story.
As I mentioned in my last post, on the 21st October 2020 I had my Adult Autism Assessment. The day started as I’d expected it too, a night of no sleep followed by being up far too early, because anxiety wouldn’t let me rest. That morning was incredibly cold, so I had to be bundled up in my thick winter coat as well as wearing a scarf, neither of which I like wearing. They are too restrictive. I arrived in the town centre about half an hour early, so to give me something to do to use up some time, I treated myself to a hot chocolate from the coffee shop, which was still service for takeaway orders at that time. Not only did it give me something to do, it was comforting, calming, and warming…. both internally and for my hands. I wandered very slowly to the building where I was going to meet my psychologist, who would then introduce me to the 2 women doing the assessment. One was a clinical psychologist specialising in autism, and the other was a speech and language specialist. Both were friendly but calm, and were very good about trying to reassure me as much as they could. They knew that I was living in refuge and had PTSD, so I appreciated the fact that the very first thing they asked was what was the best thing they could do if I had a flashback or panic attack. The next question they asked, was if I wanted them to turn off the overhead lights. That helped too. The next 35 minutes are mostly a blur. I know that I rocked and leg bounced my way through it, and drank several glasses of water. The thirst from the anxiety was awful, my mouth felt like we were sat in the middle of a desert, rather than in an office building.
They read through my answers on the questionnaire and asked a few generalised questions. Did I think I masked? Did I have any “unusual” interests as I child? Did I have many friends? What did I think about my peers? Did I feel different at a young age? How did I feel when plans changed, or when I got angry or frustrated? I had to describe my behaviour as a child too, and listened to the recording I’d gotten from my mother about my childhood also. My mother lives 400 miles away, and obviously with it being lockdown, she couldn’t travel from one end of the country to the other. I recorded the phone call I had with her. I asked her the questions on the questionnaire, and she answered in her own words. It was completely unedited, and the best we could do given the circumstances. They listened to her saying about how when I was only a few months old, I’d repetitively bang my head with my fists and cry for hours. She also said how once I got to 6 months old and could sit up, when I was frustrated I’d have a “tantrum” (her words!) and bang my head against whatever hard surface I could, be it the floor, a wall or the bars on my cot. She mentioned how these would happen multiple times a day, and could be because of “Something daft like refusing to wear socks in winter because they “hurt”.” For the questions about how I was at playschool (now called nursery) and then full time school, she said about how when she left, I would scream and scream and have tantrums, so in the end as a distraction in order for her to leave, they would take me to the supermarket across the road to buy milk, so I didn’t actually see her leave. She said how I never interacted with the other kids, I’d either play by myself, or talk to the adults. I wanted proper conversations, not the stilted conversation from a toddler. It was much the same once I got to school, and then later college. I had nothing in common with my peers. She mentioned about how she used to send me to my Nan’s every weekend and school holiday from the time I was 3 (and my brother 5), because she “couldn’t cope with us both”. When asked to describe the “tantrums”, she described the time I was around 6 and had a tantrum because she’d put the tomato ketchup squirted all over my food, rather than in a puddle not touching anything, and how I sat half way up the stairs, screaming and crying and “carrying on”, rocking and slamming my head against the wall. Word for word she said “It went on for hours until you exhausted yourself, although I’m not sure whether you fell asleep or knocked yourself out from the head banging. I had to pick you up and carry you to bed. You didn’t even stop screaming when I threatened to open the front door so the rest of the street could hear you!” There was a question about my eating habits as a child, and Mother described how my foods couldn’t touch, and that whilst I’d eat a wide variety of food, I’d eat something repetatively until I got bored of it, and then moved onto something else which I’d then eat 3 times a day. These obsessions could go on for anywhere from a few days, to several months. I am still like that now at times, although not as often. I still can’t have food touching on my plate either. She told them that I’d “be a nightmare” during school holidays, and couldn’t wait to go back, and “God help a routine changing”. It was incredibly hard listening to her talking about these things in such a relaxed manner.
Then it was time for the speech and language part of the assessment. She started by explaining that there were no right or wrong answers, as her job was to see how I interacted with language in general, and how my brain processed the language. We played a few word games, “If I say a word, what is the first word you think of?” type games. Then there was one to see about short term memory. She read a short story and then asked questions about it. After that, she read it again, and asked me to repeat it back in as much detail as I could. At the end of the assessment, they told me they would both be meeting a week later to discuss their findings, and then I’d hear back from them.
The 28th October dawned after 7 very long days. I knew they were meeting at 3pm, so all day prior to that I could only think about what was going to be said in that meeting? Did they think I was autistic? Would I get the answers I’d been looking for, for so long? How would I feel if I didn’t get diagnosed? How would I feel if I DID get diagnosed?! Finally it got to 3pm, and my stomach was churning. I was expecting a fairly long wait, but it came as a surprise when my phone rang at 3.05pm. It was my psychologist, and I’ll never forget her words. As soon as I answered, she said “I know how stressful this has been for you, so I won’t make you wait. They’ve already called me and given me the go ahead and tell you that they ARE diagnosing you with Autism Spectrum Condition.” What else was said after that, I don’t know. My head was buzzing. Here was the final piece to the jigsaw that had been missing for so many years. I know a lot of people are against the puzzle piece image as far as Autism goes, because of the connection to Autism Speaks, but for me it represented exactly how I felt. How I still feel. For 33, almost 34 years…. I had lived with all these challenges, all these difficulties that had made my life so exhausting and demoralising, and finally knew why. I finally knew that it was because my brain was wired differently, not because I was broken or as my family always said, an “evil devil child”.
A few weeks after that I had the feedback appointment, which this time my psychologist was allowed to sit in on. One of the things I asked, was if it had been a difficult decision to make, seeing as no one in my life had ever even thought that Autism was a possibility. The diagnosing psychologist said that they had known in under 2 minutes that I was Autistic and that they’d be diagnosing me, the rest of the assessment had just been a formality. The rest of that session was mostly discussing the best ways for my psychologist to continue to help and support me. I was given a list of women specific resources, and that was pretty much that.
In the weeks that followed, my feelings were all over the place. While the feeling of relief was constant, the feelings towards my family were not. Whilst I’ve known for years that my family is “messed up”, I hadn’t realised the true extent of it. I’d known that my entire family had been emotionally negligent and mentally abusive, having heard my mother talk so calmly about my early childhood and the way they treated me was incredibly upsetting. We weren’t “just” talking about negligence now, both her and my Nan crossed over into physical abuse. You can’t call it anything else, when all they did was stand by and watch a defenceless baby in so much destress that they are hitting their head until they pass out. How they treated me as a child was not acceptable in any way. It has taken until now to not only process my diagnosis and accept myself for who I am, but to work through my feelings about my family and childhood. When I told my family that I had been diagnosed as autistic and had a very lengthy report explaining how they came to that decision, they still don’t believe it and think it’s wrong……because I can talk. Never mind the fact that when I get too overwhelmed, I always have and still do end up selectively mute.
So, this is my diagnosis story. This is my puzzle piece. Personally I prefer to refer to myself as Autistic rather than a person with Autism, and I am not ashamed to be me. I am not embarrassed about being Autistic. I wasn’t born to blend in, I was born to stand out, to be different.
The Broken Butterfly 