Value the Input of Autistics on Autism Policy

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[Image description: twelve people in casual clothing sitting around a board room table]

“Nothing about us without us” is a creed in the disability world meaning that all policies affecting disabled populations must be subject to substantial consultation with the affected population before they can be enacted. Autism services, nonprofit organizations, and policy makers have a duty to consult with autistic people before launching initiatives, and when reviewing and auditing the impact of autism services. “Substantial consultation” means that the pool of disabled people consulted must be high in volume and diverse in background. We feel the need to differentiate “substantial” consultation from “token” consultation as we continue to face tokenization in the consultation process.

Token consultation occurs when the number of abled people consulted on a policy affecting disabled people outweighs the number of disabled people consulted on the policy, and/or the input of abled people reaches the final product to a higher degree than the input of disabled people. An autistic self-advocate is tokenized when they are “consulted” on policies affecting them, but their input is not valued and their advocacy is not apparent in the outcome of the policy. Token consultation is not appropriate or acceptable in spaces that work to be inclusive of disability.

Token consultation is an important issue in autistic self-advocacy because there are funding dollars for nonprofit organizations attached to consultation. There are organizations that want that extra funding, but do not want the trajectory of their initiatives to be impacted by autistic self-advocates. During the consultation, many self-advocates are silenced during the process, we face bullying from abled people on the consultation panel, and in many cases our contributions are not valued and barely reach the final report if at all. But because the final report can honestly state that lived experience advocates were consulted, the organization receives the dollars that they are applying for.

To combat tokenization, we require a commitment from all people who donate to autism organizations, and all people on funder panels who distribute funding for autism organizations, to be critical of what degree an autism organization consults with autistic people. When an organization releases a consultation report prior to the enactment of a policy or initiative, ask questions about what autistic self-advocates had to say during the process. Ask for the names of self-advocates who were consulted, and reach out to us. And if an organization cannot produce a consultation report before launching an initiative or policy, take your funding to an organization that can.

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