The question of who can best represent autistic people is deeply contested. Last week at the IOE, the Centre for Research in Autism in Education (CRAE) brought together journalists, headteachers, clinicians and campaigners to debate and discuss this issue. Although, unsurprisingly, there was no complete consensus, three main themes emerged from the discussion.
First, despite ongoing improvements in service provision for autistic people and their families, all of our contributors powerfully reminded us that all too frequently they struggled against authorities of various sorts to ensure that their own, or their children’s, needs were met. Guardian journalist John Harris spoke movingly of the battles he has endured to secure support for his young child in the West Country. He also described the anxiety it provoked as he had to decide how hard to push his case. Everyone involved in autism therefore needs at some point to acquire skills in personal advocacy, whether they find it easy or hard.
Improving personal advocacy, however, is not enough. The second theme was the need to develop effective collective representation of autistic people. Russell Stronach, Co-Chair of the Autistic Rights Movement (ARM) UK, reminded us that autistic people too often are represented in high-level policy debate predominantly by those with an indirect relationship to the autistic community itself. The diversity of the autistic experience – from those who can easily communicate their needs to those who struggle to speak for themselves – can make such collective representation difficult but Russell emphasised that this diversity is no reason to negate the fundamental democratic principle of “nothing about us, without us”.
This combination of the need for personal and collective advocacy took us to our third theme: the need to train individuals and groups in the skills necessary to advance their own cause. One member of the audience told how her son was given the confidence to develop ways of expressing his own requirements during a brief period of primary school education in the US and of the way in which this had transformed his educational experience.
Empowering individuals to speak for themselves – even for those without language – emerged from our discussion as a critical way forward for everyone in the autism community. Educators of all sorts have a vital role to play in enhancing these capacities.