Awareness and the ‘autism’ label

World Autism Awareness Day

2nd April 2016

Public awareness of autism has no doubt improved in the seven years since the first ‘World Autism Awareness Day’ on 2nd April 2008. As a funder with more than a decade’s engagement with autism, we at Pears celebrate how autism is gradually becoming part of mainstream culture and language. We are also aware, though, that recognition of the term does not necessarily translate into deeper awareness of what it means to live with autism, or just how vast a range of experiences and challenges are all covered by that one label.

Over the years we have had the privilege to meet many children and young people and learned that once you have met one person with autism, you have, as the saying goes, met one person with autism.

That said, there is perhaps one common feature which is summed up as ‘Seeing the World Differently’, the title of a recent research project led by Professor Liz Pellicano and her colleagues at the Centre for Research in Autism and Education, UCL Institute of Education. Nevertheless, the one thing everyone we speak to emphasises is the need to be careful how we use, and what we understand by the label autism.

For many parents, securing the diagnosis of ASD (autism spectrum disorder) for their child can be the culmination of years of struggle. Having a statement of special educational needs means finally knowing what you and your family are up against. It also, importantly, promises additional resources to support their child in the classroom.

But parents also tell us how diagnosis means having to deal with how your child suddenly goes from being Danny, Laura or Matt, with a personality and set of characteristics all of their own, to somehow being defined by a particular label. I recently read a blog by a mum of a boy with Down’s who is also an SEN teacher,  who was very clear that SEN needs to be understood as something complicated, not neatly defined. I particularly like her recommendation that “… once we have the labels we need to peel them off the children and put them back in their boxes.”

Peeling off those labels and treating young people as individuals is exactly what our partners do. Ambitious about Autism aims to make the ordinary possible for more children and young people with autism. At the charity’s TreeHouse school, this can mean controlling the external environment and working to gradually desensitize students so that they are better able to cope with and process sensory stimuli. The Pears Special Resource Provision at JCoSS provides a base for students who will, over  time, spend more and more of their time in the mainstream secondary school. At the RNIB Pears Centre, a residential school for children and young people learning difficulties and disabilities and who are blind or partially sighted, an ASD diagnosis will add yet another layer of complexity to an already complex and highly individual set of challenges. Here, as at TreeHouse, students who are non verbal use ipads or other assistive technology to communicate but for each and every one of these students, living with autism means something different.

So having a UN designated day is great, but there are still many myths to dispel, labels to unpeel and barriers to overcome to make society more autism friendly, and all of us genuinely autism aware.