Who should speak for autistic people?

Liz Pellicano

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.

Tagged with: , , , ,
Posted in Special educational needs and psychology
One comment on “Who should speak for autistic people?
  1. Bobbi Elman says:

    So pleased I was there to hear such brilliant speakers on such a fantastic debate.. Hope there are more to come

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

UCL Institute of Education

This blog was written by academics at the UCL Institute of Education (IOE), for anyone interested in current issues in education and related social sciences.
IOE Tweets
%d bloggers like this: