April is autism awareness month. Autism Jersey helps support adults and children with autism to cope with everyday life. There are some adults in Jersey who require support 24 hours a day. Others may need only an hour or two a day. Autism Jersey assists with life skills such as cooking and cleaning to help people to live independently. The charity also runs an adult social club every week to help people meet, make friends and relax in a welcoming environment.
Here, artist Juliet St John Nicolle describes what it is like to be an adult living with autism.
I was about 50 (I am 53 now) when my autism was diagnosed and it came as a huge relief. To be finally recognised as the individual I am, instead of the many claustrophobic boxes people had tried to fit me into throughout my life.
I always knew I was different. I was born with it, it’s not like a disease, you can’t catch it.
Huge sensory overload became apparent very early, crashing like cars on a busy highway all going in different directions. I mean everything, the noise the world around me was making and it was like pure chaos, no way to find the end of the thread to untangle the strangling web, which I could find no escape from, I was penned in, in what felt like a world which was foreign and to which I did not belong.
I had and still have my own language, and when I speak it, it is like a comfort blanket to me. The clatter stops, it is silent and I am in my own time zone.
Each day, I have to arrive into a world that I do not belong to. I am a visitor in an alien world. Over the years I have created an ‘earthling manual’, which I use to operate through the day as to what society wants me to do. Because I arrive, new every day, I need to look up ‘events’ in the manual, hoping I can find the right page, to then understand what is required of me.
I have found ways to create a river flow from my world to the ‘earthling world’, through art. My world is in colours and sounds, I don’t see like you do. Sounds form colours, shapes and movements which have no boundaries. They can merge and morph.
I see autism as a gift, not a hindrance. Autism is individual, this I really want you to understand, no two people are the same.
I want to ask you to go beyond what you see with your eyes and look inside the person. Being open, patient, respectful, not judging is reassuring for me and is like being given a hug by your very presence without the need for physical touch.
Sometimes I have a meltdown, which happens when I cannot process information quickly enough. They are not a childlike tantrum. For me a meltdown is crumpling up and withdrawing, shutting down, like the plug has been pulled out of me. Or I may run away, to try and find my own world, for safety.
In meltdowns I don’t want to feel abandoned. I like non-contact, (touch is like an electric shock) voice reassurance helps me. The voice filters in and eventually I can follow that back to you. I may not be able to answer for a while.
I now have support with Autism Jersey. Before having support it felt very dark here and unlivable. With the support, there is hope.
To go about my day with a member of the team enables me to not feel a freak, to feel a sense of pride in myself as I slowly learn to believe that I am worth it.
My main dream is to get my art exhibited and into the mainstream. Through my art I am inviting the viewer to come for a cuppa in my world, hoping that I can give them a gift, to take back into their world.
www.autismjersey.org
