My criteria for Autism organisations is pretty simple. They have to put Autistic voices at the forefront. Even beyond “nothing about us without us”, the priorities of the people who the organisation purports to serve need to be absolutely central to the organisation.
I have two Autism organisations that I am particularly fond of.
The first is ASAN, the Autistic Self Advocacy Network. This is an Autistic disability rights organisation – that is, it’s been developed and is being run by Autistic people, to advocate for and with Autistic people, and to help develop the capacity of Autistics to advocate for themselves and others. The group provide a media presence, a hub and actual support to support people’s self-advocate, which may include training, funding .
In their own words:
“ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us.
Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism.
Our activities include public policy advocacy, the development of Autistic cultural activities, and leadership trainings for autistic self-advocates. We provide information about autism, disability rights, and systems change to the public through a number of different educational, cultural, and advocacy related projects.”
The ASAN website includes a Resource Library, which includes tools and resources to assist with self-advocacy. It provides guidelines for some of the issues that come up again and again, including supports, health, law and political policy, although these are directed mainly at an American audience.
It also has a list of Position Statements, outlining the position that ASAN takes in regard to many of the most pertinent issues it deals with on a regular basis,
The Australia & New Zealand group (ASAN AUNZ) has a the same role to play here, supporting and bolstering Autistic people in their self-advocacy, and is the peak body for Autistic Self Advocacy, as well as the primary public voice of Autistic people. The site links to the resources on the ASAN site, and also provides local advice, guidance and commentary on issues affecting Autists in Australia and New Zealand.
My other favourite Autism Organisation is quite different in style and purpose from ASAN.
The Autism CRC (Co-operative Research Collaboration) is a national (Australian) research cooperative group, focusing on autism, and is the result of collaboration between the autism community, research organisations (mainly universities), industry and government.
Reading that, you would expect it has the potential to be dry, and possibly follow a medical and deficit model of Autism (as most research institutions, industry leaders and political departments do). But this unique collaboration have done something few other large organisations do, and incorporated Autistic people across the entire organisation at many levels.
Before any research projects can be supported by the CRC, they are assessed by Autistic reviewers with training in collaborative research practices to ensure that the project leaders have really engaged with the Autistic community. This means everything from the determination of research priorities to the presentation of the completed research, and each step in between, need to be in line with the goal of being co-produced with Autistic team members.
It would be very easy for an organisation to claim this without having to do the hard work to make it so, but I am constantly and pleasantly surprised with every interaction I have with the ACRC. They have a real respect for Autistic culture and people, and a commitment to making their research relevant, practical and inclusive, even down to providing “Autistic space”.
I spent a week at the Autism CRC Research Academy last year. It was not the first time I had been in Autistic space – my monthly women’s group provides that, too – but it was the first time such space had been deliberately and formally crafted to put Autistic comfort at the centre of a workshop-type experience.
The provision of a highly satisfying and satisfactory physical environment, incorporating a variety of seating and lighting arrangements, sensory tools (i.e. ‘stim toys’, although the word ‘toys’ was rejected to avoid infantalisation), and most importantly, the ability to participate in whatever way was most comfortable, to the degree you were comfortable, and to leave if you were *not* comfortable; freedom to stim openly, time given for reflection and for written as well as spoken feedback addressed the next day. I am quite sure that none of these provisions would be considered unwelcome by the allistic majority (except perhaps open stimming, which is ‘different’ and therefore feared).
Liv, Cheryl and the team (a mix of Autistic and non-Autistic team members) made the experience simply remarkable. It’s hard to define how Autistic space is different (apart from being full of Autistic people), but I think the crux of it is true respect for people which does not gloss over difference, but embraces it and works it into the space.
Since completing the Research Academy, the other participants and I have been invited to contribute to several other CRC projects requiring Autistic voices, and I have never felt the taint of tokenism in this involvement. I am always reliably and happily surprised at how well they ‘get it’.