Challenges of autism
Autistic life is hard. It’s like swimming against the tide, all day, every day. It is exhausting. To protect ourselves against this we rely on routine, structure and a support network. We build a life around our needs and try to get through day to day.
So, what happens when a new challenge comes our way? Life doesn’t always stay on the rails and things happen that aren’t part of a routine week or month.
The pandemic has meant things are pretty consistent. This week as I came across a new challenge, I was reminded just how much it throws me out.
I signed up for ‘Walk for Autism’. This requires me and my partner to do 10,000 steps every day for 8 consecutive days. Now, bearing in mind I lost the ability to walk in 2018, I new this would be both a huge autistic challenge as well as a physical one. On average before this challenge, I would walk under 1,000 steps a day.
As it looks likely we will be able to re-enter the world soon as restrictions lift, I was keen to push myself to get out more and walk to get my 10,000 steps. The thought both terrified and excited me. But one thing was for sure, I was determined as hell to hit these steps and raise some money for ‘Walk for autism’.
I have recently worried about the stability of my support network and researched into what support I could access. Trust me the government and councils were very far down the list, the ones offering help were charities. These charities rely on financial support. As much as it sucks, they need money to function. They need money to support autistic people and their families through the challenges we face.
The first ‘Walk for Autism’ day was Friday. I was off work, but my partner was at work. After walking someone part way to school I was determined to wrack up some steps and get off to a good start. A few minutes in I began to get overwhelmed by all the noise and movement around me. It has been a while since I was solely responsible for crossing a road for example or noticing if someone was talking to me. I phoned my brother in an attempt to settle my sensory overload. It worked, for a few minutes, before the wind picked up and I couldn’t hear him. It all became too much, and I went back. I was frustrated but still determined. I would head back out later.
I did head back out at around 10:30am. Upon texting my brother as I left it became clear he was busy at work. I felt alone and scared but set out to try and get some steps. Again, a few minutes in I became overwhelmed by the sensory attacks around me. As I fought back tears I headed back. I felt shaken but proud of myself for trying. I went back and busied myself around the house, walking back and forth, while waiting for my partner to get home. When she did, we headed out and I got the last steps I needed. With her by my side walking was a completely different experience. Not an attack on the senses, but a safe walk. Autistic people depend on a support network for a quality of life. When friends and family can’t be this, charities can.
I was not only pushing myself to walk all day but coping with the weird feeling of change as I was in the house and my partner was out (she has only just started her new job). I was doing tasks I hadn’t done before to help with the house, I was alone all day and worried I wasn’t eating right. I was studying instead of working. It all felt off.
Day 2 of ‘Walk for Autism’ would be done with my partner. I felt a lot more reassured at this prospect. We went into town to visit a shop and then grabbed a drink on our way back. Both pushed me mentally, I haven’t been in busy shops in a long time. Someone’s phone ringing beside me, the tills beeping, the smell of the coffee shop. It was all a lot. But, as always, I pushed through because I am stubborn and determined to rebuild my tolerance to public spaces.
As we walked back through the door, we noticed our steps were low and we should get some while we had the time. We set off and walked a few thousand steps around town.
A few minutes after getting back I came over faint and dizzy. I sat down with my back against the counter and told my partner I felt faint. I then had to lay down back on the floor as I thought I was going to pass out. After a couple of minutes my partner helped me get upstairs to lay down. As I stood, I swayed and she supported me, then guiding me up the stairs.
Half an hour I spent led in bed. I felt weak and exhausted. My hands felt strange and my mind numb. My partner talked to me, but I said nothing back. I had gone nonverbal and weak. Exhaustion had got the better of me.
I had spent the last couple of days pushing myself too hard. I say on here about taking things slow and not pushing too fast, but my reality is I’m too stubborn to slow down. People say of ‘beating autism’ and ‘fighting anxiety’ like if we were determined enough or resilient enough, we could come out on top. It’s a load of rubbish. You can’t outfight either. You have to respect both and work with them. To know your boundaries.
I recovered yesterday and was at just 7,500 steps by 8pm. Still determined to reach the 10,000 steps daily goal I walked up and down the house for the remaining 2,500 steps. Sometimes you just have to work within your means and take the sensible, safe, option.
Today I continue my ‘Walk for Autism’ journey as determined as ever. But a little more aware to do it sensibly. I have a disability. I cannot run out of the gate and drill through everything to achieve a sponsored challenge. I will hit my 10,000 steps a day, even if it means pacing the lounge.
Huge thankyou to those who have sponsored so far, it really does mean the world. This is a huge challenge for me and one I am extremely proud of. At the same time, it raises much needed funds for autism charities that support autistic people and their families – often when they have no one else.