On World Autism Day, Nicky Clark looks back on her experience of bringing up two daughters with the condition and pleads for public understanding.
If you are a person with autism or you love someone with autism you will know that the world is simply not built to accommodate difference.
It seems the more we learn about diversity and disability the less we know. It sometimes feels that many people really don’t want to know, as this is someone else’s problem it really isn’t their concern.
Yet all people affected by the condition or not can contribute towards promoting acceptance. Not staring at disabled people would be a good place to start.
Disability arrived in our lives as parents when Emily, our younger daughter, was diagnosed eleven years ago. Autism had actually arrived the day she was born but we didn’t realise because, along with many hidden disabilites, she looked fine.
The video Nicky Clark made about her daughters for World Autism Day 2008
She had hit all of her developmental milestones early but by three she was completely non-verbal.
After tests and meetings and assessments they told us. I’m very ashamed to tell you that I collapsed. Also I had Rainman perma-looping through my brain.
Many people when I told them asked me what skills Emily had. I have had to explain many, many times that autistic savant skills – so numerous in the brain of Raymond in the film – actually account for a tiny minority of people on the austistic spectrum.
Thanks to the work of Lorna Wing and Judith Gould,UK experts in the field, we now recognise that there is a spectrum of ability in autism and this became clear when at 10 Lizzy, our older daughter, was diagnosed with Asperger’s syndrome. This condition has the same need for routines and sensory difficulties but is accompanied with above-average – and often extremely high – intelligence.
Life can be extraordinarily challenging. As carers we are often exhausted and do feel isolated and alone. Trying to manage home/work balance is at times almost impossible.
Emily has now developed epilepsy and demonstrates extreme behavioural problems. This, of course is not her fault but it adds to the pressures we face as carers. Lizzy – though very high functioning – has massive anxiety issues and needs patience and understanding. The more high functioning you are the more the world expects.
There is much written about autism and many places you can research the condition, but what there needs to be much more of is acceptance of disability and difference. Bullying of children with this and many other conditions is routine.
My hope for World Autism Awareness Day – sanctioned by the UN in perpetuity as 2 April – is that it will take us closer to a world where my children and all people with autism can find their place.