A ‘gentle manifesto’ – Autistic advocacy and representation

Until very recently, the prevailing view in society has been that autistic people are incapable of doing much at all and needed even the most basic decisions made on our behalf. Ideas of Autistic Pride and Neurodiversity would have seemed almost universally preposterous until quite recently.  Virtually all the discourse and thinking on autistic people was told by neurotypical  people. This is the background which still informs a lot of people’s thinking in our current world.

Along with countless autistic friends and colleagues and neurotypical allies, I stand against that view. I see that autism is more a difference than a a series of inherent deficits Many of the challenges we face are not intrinsically related to our autism but to our experiences intersecting with and trying to navigate what is often a very hostile world. We hear the stories of bullying, violence and victimisation and horribly they continue.

But this post is not about doom and gloom. It is about representation, about advocacy, about the need for us to be heard and to take our rightful place in the world. In recent years in a number of countries there have been campaigns, led by Autistic people to change the way we are viewed. An example is this blog. I am one of what is now a vast number of autistic commentators talking about autism and other things. However I do  feel that my autistic friends and colleagues, all the bloggers, vloggers, advocates and activists are still at a disconnect with the wider world. The job as I see it is to close that attitudinal gap.

It is vital to see beyond our borders to the experiences of people in other counties. What is true for Australia where I live is not in other places and vice versa. The task of autism advocacy is international.

The is my list of areas I really want to see changed:

  • One of the things we are up against as a community is what I call legacy attitudes. By that I mean the sorts of thinking of neurotypical people who have been ‘doing for’ Autistics since forever. They carry these views with them. Changing legacy attitudes can be very hard as they can be very ingrained and challenging them is like challenging the person’s core beliefs. I find some of the neurotypical people who are new to providing services to autistic people are actually way ahead in their views around Neurodiversity than some of the people who have ben involved for years who are holding on to views which are thankfully becoming discredited.
  • Organisations which provide services to autistic people – children and /or adults – need to consult with autistic people at every stage. They need to have autistic people on their board and those autistic people need to be actually have their views heard and taken on board. I have been the token autistic person in a lot of settings and it is useless in terms of making change and very frustrating and upsetting for me.
  • Attitudes around people who do not use verbal speech really need to change. The invalidation of people who use augmented and assistive communication needs to be addressed. Not having a verbal ‘voice’ should not mea the person has no voice.
  • There needs to be an understanding that autistic people are actually the most proficient experts in being autistic (I know. amazing hey?!!).
  • The information we get when participating in consultations and projects needs to be accurate and include everything we need to know to inform our decision to participate or not. A Facebook friend recounted being invited to consult on what seemed to be an excellent web design project. Then at the last minute she and her autistic colleagues were informed that the funding for the project was from an organisation known widely as being invalidating and damaging to autistic people. Information on the funding body should have been given at the outset.
  • Respect, respect, respect. I have friends from other demographic, intersectional type groups who experience similar sorts of issues that I see around Autism. Respect is the key to meaningful engagement and relationships. True respect I think comes from the point where people view me – or whoever – as having the same value as them.
  • An end to the assumptions of incompetence, infantilising and dismissing Autistic perspectives. An adult is an adult, regardless of their interests or presentation. As a speaker and author I am often on the receiving end of this. The classic is when my keynote presentation  is announced with ‘And now Jeanette is going to give her little talk…’ This paternalism might  seem innocuous but it goes to people’s basic attitudes around Autistic people.

I think  we are at a bit of a turning point now. There is more representation of autistic people in decision-making bodies, a lot of the research conferences and events have a number of autistic speakers (although it should be noted that there are some problems with representation and respect in a number of the events which need to be addressed).  Attitudes in wider society are beginning to change.  We do have a very long way to go still.  We need to address the underlying attitudes that drive the issues we face. We need to move past the ‘doing for’, the paternalism, the lack of respect for us and our experience.

I am not a revolutionary. If this is a manifesto it is a gentle one but these are my thoughts. It takes all kinds to make a difference. I am happy to do everything I can to help make our world a place where autistic people are valued and respected.

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