The need to feel accepted by the establishment is probably the most effective way large charities and organisations abuse and silence the autistic community.
They collect us and willingly, we can adopt the role of ‘good autistics’ who fall inline with their policies and are silenced from criticising lest we lose our ‘good autistic’ role with them or the hope of future paid work. Sometimes, when we are included, our work is paid at a rate lower than non autistic people.
Parent led organisations often do not represent us in the ways we find helpful including language used to describe us, not including us as more than tokens and services they presume will be beneficial but are not meaningful. Sometimes, they do not acknowledge the stigmatisation we experience, such as relationships with social services.
Autistic advocates may not utilise the formal group structures of non autistic people. We may form informal networks and contribute skills to an overall goal. In many cases, it works for us, and is a legitimate form of working. Indeed, a reasonable adjustment to acknowledge our way of operating. Unfortunately, without formal structures, we may be excluded from joining ‘umbrella’ disability groups. Autistic self advocacy is predominantly not funded and that can be a barrier to us attending events and contributing on needs. Funding systems may be difficult for us to access or know how to access.
The work of Autism Women Matter is unfunded and is the financial cost of the person completing the work, sponsorship or host countries funding participation. The scope of Autism Women Matter’s work are commendable achievements for the women who are paving the way for others to follow in international advocacy. Women who are raising autistic children, women with varying difficulties relating to their autism and some overcoming fear of flying and sensory overload because they are passionate about making changes in the world. They do this so that upcoming generations of autistic girls fare better than they did.
The work of informal self advocacy structures may not easily fit within predetermined large charity mode of operation. That does not make self advocacy work less relevent. It does not negate the important contribution to creating the future rights of autistic people. When government and charities fail to acknowledge self advocate achievements and include our voices they are controlling part of the autistic history in the rights movement we are experiencing.
Validation must come from within us and our community. Without it, autistic advocacy will fail as we do not develop the mindset and skillset to operate independently and have our own voices heard.
Tokenism, the allusion of consultation as a form of silencing us must be stopped.