19 November 2018 – Ten years ago Paula Jessop entered the world of autistic communities and autism self-advocacy to promote the disability concept of ‘nothing about us, without us’.
IN OUR MINDS, as autistic advocates, it felt that frequently we were the objects spoken about, not with.
Advocates work in many ways to promote our ‘lived experience’ as autistic people, the true experts in autism due to our experience living in the world as autistic people. One of my goals as an advocate, was to help change a dynamic where organisations that support autistic people and their families seemed to be failing to positively connect or consult with autistic people. We felt excluded.
I’m not sure we’ve solved this problem yet, but it is true much has changed in the last 10 years. Autistic people are increasingly seen, heard and involved in the autism sector.
At Altogether Autism we are on a continued journey together, as passionate autistic people, professionals, and parents who care deeply about the lives of autistic people. We see this as a journey. We desire to be a part of the solution of a past of where autistic people frequently were unseen, and unheard within the autism sector. We make mistakes, we don’t get it right all of the time. We have challenging conversations. We sometimes fail in our attempts at inclusion of autistic people. We endeavour to confront challenges and conflicts in our journey to truly put the concept of ‘nothing about us, without us’ into practice.
We began by having autistic people speak at our conferences. By putting together a consumer reference group that contained myself and John Greally, to represent the views of autistic people. But along the way, I noted a problem.
Autistic people’s lives and stories from their perspective, were being shaped to a non-autistic audience.
Showing our stories was being done is a way that would enhance the understanding of people who were not autistic, but was potentially providing little assistance to actual autistic people.
The idea of ‘By autistics, for autistics’ was born.
With this journal we hope to begin a new journey.
A journey where we bring stories from those who have autism, to others who have autism.
Stories that are not shaped to help those with autistic people in their lives understand autism, but to help those who have autism.
This is beginning, to find ways to help actual autistic people learn about their own autism, from other autistics.
In our journey to forming greater connections with actual autistic people, to making our organisation one that truly includes autistic people in every way possible, we are inspired by Ta Himi Henare who said:
“Kua tawhiti kē to haerenga mai, kia kore e haere tonu. He nui rawa o mahi, kia kore e mahi tonu”.
“You have come too far not to go further, you have done too much not to do more”.
– Ta Himi Henare (Sir James Henare) Ngati Hine elder and leader.
To my fellow autistic people, these stories are just the beginning. We will do more. We will do better.
- Note on language: Paula Jessop is an advocate who chooses identity first language, as a way to represent autism as an identity, not just a part of a person. Some use person first language, ‘person with autism’. We recognise that it is the choice of individuals to use whatever language they personally prefer.
- This article appeared in the Altogether Autism Journal, Issue 3, 2018