Autistic people are absent from the boards and guiding committees of many autism services and nonprofits, and their absence is felt in the work of these organizations. When autism services are guided by committees without any member having the lived experience of being an autistic person, that lack of expertise results in unsatisfactory organizational results. Services developed by autistics for autistics are sensitive to the holistic needs of our population, and produce better results. Autistic leadership can also help organizations steer clear of actions that would provoke a negative response from the community that they serve.
Consultation with autistic people alone is not enough to ensure that “nothing about us without us” is fully realized. Consultation comes after the initial idea and conversation about a new initiative that takes place in the board room. Lived experience self-advocates must be present for that initial idea and initial conversation in the board room, so that the idea has a competent direction from the beginning. Lived experience self-advocates must also be able to put forward our own ideas from the place of being a director, and influence the core principles and mission of an organization, in order to provide the best practices for the well-being of our community.
Autistic people need to see people with their lived experiences in positions of leadership in order to see themselves as capable of becoming a leader themselves. When neurotypical and allistic people hold all of the power over us, the autistic consumers of services, then that becomes our cultural image; that an autistic will never achieve what a neurotypical or allistic person can achieve. It becomes engrained in our minds that neurotypical and allistic people are destined to hold the power and the voice, and autistic people are meant to be the passive receiver of services and should not be seen or heard. Placing autistic people into positions of leadership, guiding our services, means that person can serve as a role model and show that autistic people are capable of being leaders in their community and around the world.
A minimum 50% representation of lived experience self-advocates should be the goal of any board of directors or guiding committee for an autism organization. To achieve “nothing about us without us”, the autistic self-advocate directors should be able to vote as a bloc to overturn initiatives seen to be progressing an ableist agenda or an initiative that would not be well-received by the autistic community. Placing this much power in our hands is a demonstration that these organizations believe in the power and competence of autistic people, and that we should be both seen and heard.