All this week we are discussing Samsung’s Look At Me App, with various viewpoints on eye contact being offered.
Julie Ellsmoor is a prolific autism blogger and mother to an adult son, John 26, who is on the autistic spectrum. During the week he lives in residential care with the Wirral Autistic Society. He has been a resident with them for over five years and requires round the clock, one to one support with all aspects of his care.
Back in 1986 when John was born there was very little provision for children with autism and not a lot of information on the condition either. For the first eighteen months I didn’t have a clue what I was doing. John screamed a lot and I screamed a lot. John didn’t sleep therefore I didn’t sleep. John didn’t want to be with other children and I didn’t want to be with other mothers, some who looked at me with pity in their eyes and some who tutted and nudged eachother if John screamed when their child came anywhere near him. I tried to ignore the tutting and nudging while attempting to calm John, drink cold coffee and eat a ginger biscuit without throwing up with anxiety. I think the collective mothers at the church playgroup were somewhat relieved when we stopped going.
Thankfully as awareness of autism has spread, things are very different today.
In the early days I was regularly given check lists by the various health professionals who we came in contact with. I was required to tick the boxes which best described John’s behaviour. I ticked most of them but all this achieved was to make me more anxious than I already was. What did all this mean for goodness sake? We had already established he was autistic from the first tick list and although I understood the need to collate information I felt that by continually ticking away it was just highlighting the differences between John and a non autistic child instead of helping us to better understand and support him in his world.
So what if he flapped his hands, loved spinny toys and refused to eat anything but fish cakes, baked beans and digestive biscuits? What difference would it make if he preferred to sit on his own in play group or god forbid wouldn’t or couldn’t give me any eye contact? I felt that there must be really good reasons why John did or didn’t do these things. It was clear to me that he was making choices which were important to him. Forcing him to go against his choices caused his anxiety levels to rise and usually ended in a meltdown. This was not about John being a naughty boy, on the contrary this was about John trying his best to stay calm and feel safe.