The United Nations Convention on the Rights of People with Disabilities (UN CRPD) gives disabled people a right to be represented in decisions made about us, through representative organisations. Article 4.3 states:
In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.
It enshrines in international law the established principle:
Nothing about us without us.
Disabled people are too often talked over and spoken for by people who may or may not have the best intentions, but do not have the lived experience of being disabled: that is, being different in ways that mean we are excluded from full participation in society if people do not make reasonable adjustments.
When people who don’t actually understand what it’s like to be autistic are left in charge of deciding things about people who are, they make all sorts of mistakes. This is not necessarily their fault, and doesn’t indicate any real personal failing. It’s just that the people most affected by decisions are generally the ones best-placed to make them, because they’re the ones who understand the implications.
Many disability organisations have transformed from charities for disabled people to organisations of disabled people – for example, the RNIB and Action on Hearing Loss (formerly RNID) both reformed as Disabled People’s Organisations, with disabled majorities guaranteed on their boards, and a membership that they are accountable to and can claim to represent.
Autism charities have not done this, so the organisations that journalists, governments and companies overwhelmingly ask to comment on matters relating to autism have no claim to represent autistic people at all. Most have few autistic people in decision-making roles, if any. Many have a history of alienating any autistic people who do work with them, one way or another. There is a need for Autistic People’s Organisations, set up to represent autistic perspectives and connect autistic people with each other, to ensure that the priorities of the autistic population are heard.
Autistic people empowered to work on things that are meaningful to them can achieve great things. Autistic communities allow us to share strategies, perspectives and ideas. Without that connection, too many of us feel like we’re struggling on our own.