The Impact to families of Autism
David Preece, Associate Lecturer in Education talks about the world-wide aspects of autism to mark Autism Awareness Week 2018
World Autism Week starts today, and I have been thinking about the world-wide aspects of autism a lot recently. I am running a project developing parent education about autism for families living in south east Europe and spent all last week working in Cyprus, where I met many parents and professionals. I’ve also recently been working and talking with families and professionals in Croatia, Macedonia, India and Brazil.
Two things have really struck me in all the conversations I’ve been having as I’ve travelled. The first is the universal nature of autism. No matter whether it’s in Skopje, Limassol or Bangalore, the challenges that parents face are similar. Although autism is now known to be much more common than was previously thought — with over one in one hundred having the condition — parents and families are still, everywhere, facing stigma and social isolation. Children’s behaviours are misunderstood not only by the public but often by grandparents and the wider family. Teachers and professionals don’t understand how children with autism experience the world, how they think and learn, and blame children’s behaviours on ‘poor parenting’. And when they go onto the internet to try to find how to help their youngsters, they are confused by the array of claims of ‘miracle cures’ and conflicting approaches that are offered, and often do not know where to turn or what to do.
At the same time, I have been overwhelmed by the depth of knowledge that parents have about their children, and the love and acceptance they show towards them. I believe that it is incumbent on professionals working in the field to acknowledge that though they might be experts on ‘autism’, the parents are the experts on their children. Professionals should approach families with humility, and it is their responsibility to be aware of what is ‘good practice’ so that the advice and support they give to families is helpful and based on evidence of what works (not what’s marketed effectively). Autism is a spectrum condition, and there is no ‘one size fits all’ approach that is going to help everyone. But as the families and professionals I’ve been meeting with have shown, when parents and professional work together in positive relationships, they can achieve great things.
