Autism Acceptance Month; The Journey
A member of staff in the North West has gratefully shared their story with us as part of Autism Acceptance Month. They speak about how their ADHD manifests in their daily lives, and the importance of diagnosis for both them and their daughter who is autistic.
I’ve been on the phone to BT for 21 minutes now. The first 16 were on hold. In that time I emptied the washing machine, got distracted half way through by a wet patch under the radiator valve, wiped, placed toilet roll to monitor the leak, put the kettle on, then looked around and remembered the rest of the washing.
Janet from BT answered the call as I hooked the last pair of socks on the leaking radiator. She asked me for my name and I had to take a breath and think about it. I must have got it right because she’s in my account, checked my phone line and agreed there’s an issue. We’re now in the process of ordering a new router. The phone now says 21 minutes and 32 seconds.
Janet from BT: “Sorry about this. The system is slow today.”
I can hear the odd click clack on the keyboard and frankly I think she’s going a bit slow as well but just as I’m about to voice this, the trainer box catches my eye. I walk over to them (I’m hands free, I never use the phone without earphones at home), take them out and admire them. White. Pristine. I put my foot into one and grunt a little. They weren’t this tight in the shop.
Janet from BT: “You ok?”
Me: “Yep, just putting my new trainers on.”
Janet from BT: “Oh. Ok.”
Me: “Do you grunt when you put your trainers on?”
Janet from BT: weird laugh “Maybe. Sometimes.”
Me: “They’re white. White as white.”
Janet from BT: “Nice.”
They are new Nike Air Force trainers. White. When I was young I had a pair with a red tick.
Me: “When I was about 16 I had a pair with a red tick.” I can hear the keyboard in the background clacking and clicking. “Do you think it will be okay to wear them to Aldi?”
Janet from BT: “Erm, I don’t know. What’s the weather like there?”
Me: “It’s raining.”
Janet from BT: “Then no.”
Me: “No? Why?”
Janet from BT: “Well, you don’t want to get them dirty. Wait until the weather is better?”
Me: “It’s January? That’s ages away.” This is how it goes. It comes into my head and travels and lightning speed, and Janet doesn’t know I have the patience of an angry wasp. “When I was young I had a pair with a red tick.”
Janet from BT: “That’s all ordered for you. Good luck keeping the trainers white!”
Afterwards I’m filled with self-loathing, why did I say that? What was I thinking? Will Janet send a dud router in protest?
Janet got off lightly. Last time I rang a call centre was to renew my car insurance. I rang in a panic believing I was driving illegally only to be told I already had two policies in place. Two? How? The internal motor took over and I spent seven minutes explaining what a glioblastoma multiforme was to a kid in his teens- horror story stuff. My Dad died three weeks later.
I’m an oversharer. I repeat myself. I get angry when I come up with ideas and no one else is moving at the same pace. I have pairs of shoes, boots and slippers scattered around the kitchen by the door- prime tripping territory. I get annoyed at everyone in the house that the place is a tip then realise it’s all my stuff. I constantly lose my keys, forget where I parked my car and whether I turned the straighteners off. I send long emails to teachers who are not following instructions on how to support my autistic daughter and I know everyone’s name in the local Co-op and they better always stock Daim bars. However, if I meet them outside Co-op I have no recollection of them.
I struggle to rest my mind. My only respite is sleep. I move at such a pace that I can suddenly fall asleep and wake up with a list. Friends and family think I’m organised and driven, but they don’t see the chaos. My report from my high school science teacher, who had a way with words, said that I was a “perpetual motion machine.” My primary school report says I talk too much and should concentrate, then I would do well. Better. But everyone’s says that, doesn’t it?
I always forget what I’ve gone to the shop for. Apart from Daim bars because they’re next to the till in the Co-op. I wonder if Janet likes Daim bars.
In 2019 I got my Mum a clutter fairy. She needed to get her papers in order and I just didn’t have any free time. When Sian the nice clutter fairy wandered into the study, she stood in the middle of the room (the only clear floor space) and with a gentle face, said: “Have I come to help you or your Mum?”
“Mum. I’m fine.” I replied.
Mum’s new house is lovely but has thin walls. After I’d stomped around the house and barged in on their tête-à-tête to demand where such and such was three times because I’d forgotten what she said as soon as I left the room, I slumped into the office chair. I heard the pair chatting in the room next door and Sian asked “Is she always like this?”. My mum responded “Always.”
In the 8th week, Sian told me she was ADHD-accredited from some society or other and offered me some extra hours. I wasn’t offended. I was busy. Then the pandemic hit and I was trying to support my autistic daughter navigate the new world while waiting for her formal assessment. I went into survival mode. I ate Daim bars and drank Corona.
After years of fighting, in 2021 the day finally arrived. It was a day of filling in forms I struggled to navigate and oh-so many tears. My daughter and I spent three hours separately being assessed and interviewed, flicking through years of forms and questionnaires and blue cord carpet with brown stains and look! Leaking radiator valves and grimy door handles… “Hello, yes I’m listening. I’m trying.” The psychologist asked if I was okay and if I needed a break. “We needed a break a long time ago. Sometimes I look at all this and think I’m autistic.” I replied. “You have to score highly in all areas of the pie to be diagnosed,” she said. “Well I don’t. I only scored highly on the ADHD chart!”
I laugh really loudly. I always do. I repeat myself constantly and never know why.
We got a phone call the day before Christmas Eve. She has her diagnosis. Nothing in the world acknowledges this momentous event other than the sudden sense that everything is calmer. Something settles. You can’t see it. Something just feels different. She is happy. She trawls TikTok for clues and to find people who feel like the friends she never had.
In January I have the chat with Janet. In February I listen to my friend Elsa who has been working with an ADHD advisor, who sits me down and says “You’re not crazy. You’re ADHD.” And there it was- every single question, everything slotted into place. Everything she knew about me she gently arranged in the correct drawer. And then she voiced my drift. My thinking face and intense eyes, my ‘not there’ moments. It’s the space where I go when I’m trying to think, to give me a chance to catch up with myself before I jump. The quiet space between two parallel universes. Doing two things at once and moving like a perpetual motion machine.
I always thought there was something terribly wrong with me, when all along I was just trying to squeeze into a star shaped hole.
It only takes one person to see you. I had been trying to rein myself in and I only saw the puddles, but I should have been looking up at the rainbow and dancing in the rain.
“Hello World. I’ve been trying to find you for a long time.”