When your child has cancer, physical disability, waiting diagnosis, waiting for cure, for medication to work, as a parent you receive a lot of support.
For my son who is now 16 the sympathy for his complex needs has ended a long time ago and any interest in his wellbeing gradually fading with his cuteness as he is transforming into a young man.
Living with disability becomes the norm for you as a parent and the one around you, and the assumption that you just get on with everything is common. You stop bean invited to family events and friends assume that you won’t be able to make it or that you are too tired.
The world around you becomes more and more deserted and if you are not in capacity to be part of an autism group and reliving and participating in ‘all things autism’, you find yourself alone, often unable to fit into the ‘normal’.
For me and my son, 15 years before covid pandemic challenged us all, our life was already isolated, restricted, restrained, limited, dictated and debilitating by the complexity of autism and associated conditions.
Watching everyone sharing the pain and frustration with isolation I couldn’t help to be reminded how horrible and lonely our life has been and how hard it was for anyone to understand what is like in the prison of autism.
Observing others expressing their frustrations allowed me to feel the pain for the first time. 15 years of supress emotions that enabled me to cope with my circumstances, came back flooding together with the associated anger that I have never permitted myself to feel – where was the support for us?
Years of visits to deserted playground that no one else attends, very early morning travel to avoid crowds, picnics in the most secluded parts of nature, lunch in hours most unattended by the public, Sunday’s mornings in empty cinema, learning to ride a bike at the cemetary…. I could go on.
No calls, no zoom, no visitors tolerated at any time.
But it gets worst. Been kicked out of a bus or café by intolerant people, shout at, spat at, assaulted, insulted, arrested… this is what leaving with autism really is for us.
The extent to which I have worked to help people understand autism and its presentation is relentless. From putting labels on my son’s jacket to cute t-shirts I designed, having sweet, brown autism assistant dog to soften the reactions from public towards us, I have tried it all. If there were people, there was a risk of having altercation. Leaving home was risky but staying was lonely.
For the first time ever, people find themselves in my shoes and year later, this is our new normal. For us lockdown made life a lot easier. London’s empty streets are easier to navigate, social distancing means personal space is not invaded, less noise, less visual stimulation, more reasonable space in que allowing for privacy and helped prevent incidents….. We have now got use to this and it is about to change again.
What awaits us is a massive change to our life and daily routines. Autism does not like that.
Where for most, the ease of lockdown is something to look forward to, for us the risk continues, now even greater, as my son is growing to be a young man, our autism dog is long gone, and no t-shirt will ever be enough to help people understand the complexity with which my son has to navigate the world.
April is Autism Awareness Month – now that you understand what is like to be in isolated and lonely, think more carefully about the people around you.