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"I have massive sensory sensitivity. Especially to light and sound. My sensitivity fluctuates depending on how overloaded I am. If I’m not overloaded, then I can tolerate a lot more. "
My understanding has really grown over time about this. I didn’t always know or understand about my sensory sensitivity or how it impacts me. This meant that I didn’t always know what I needed to do to help myself, or what others could do to support me. I naturally did some things to help me cope, like walking or pacing, but I didn’t know how important they were until I was stopped from doing them.
"Patterns are a real problem for me. I get absorbed by them – they take all my focus and it’s really distressing."
When I’m overloaded, I can’t manage visual clutter, things on mantelpieces and walls, open fires, pattered carpets or clocks ticking. These are all things that would seem fine on a good day but become too much.
I grew up in a seaside town, so I’ve always been able to manage my sensory needs. I need to have space to walk and to exercise. I need space that’s quiet to do this.
When my daughter was born, she added a lot of noise and chaos. Babies are unpredictable. I was doing OK but I became unwell when my brother died. It all became too much, and I needed support.
I asked for help from mental health services – my biggest mistake. I was admitted to hospital and really struggled with the sensory environment and with the lack of understanding about my autism. I couldn’t tolerate the light and the noise and the lack of space to move away from other people. I didn’t always have access to outside space and was restricted from walking and running – things that help me to destress.
I was discharged from hospital a number of times with no support and no understanding. I was discharged to my family home which has colourful and patterned carpets, cluttered walls and other patterns. It was too much, and I would flee, then the police would pick me up and I would be returned to hospital.
Now I realise that I need a low arousal space. I think that everyone who is autistic and discharged from hospital should have time in quiet countryside away from other people and other demands so they can decompress."
When I left hospital the last time and moved overseas, I had nothing on the walls. It was a very plain environment. Then over time, as I settled, I could manage more, I added pictures to the walls. I was living on a beach and it was calm and quiet.
If I hadn’t had that environment I wouldn’t have got well.
It’s absolutely crucial to get this right for people.