ASAN Challenges Autism Speaks on Superficial Board Inclusion Moves
Author: Ian C. Langtree - Writer/Editor for Disabled World (DW)
Published: 8 Dec 2015 - Updated: 31 May 2025
Publication Type: Announcement
Contents: Synopsis - Introduction - Main - Insights, Updates - Related Publications
Synopsis: This article presents a statement from the Autistic Self Advocacy Network (ASAN) critiquing Autism Speaks' 2015 appointment of two autistic individuals to its Board of Directors, highlighting concerns about the organization's historical lack of meaningful engagement with the autistic community. ASAN argues that these appointments, while a step forward, are superficial without substantial changes to Autism Speaks' practices, which have often disregarded autistic voices and focused on curing autism rather than supporting neurodiversity.
The article's authority stems from ASAN's leadership within the autism self-advocacy movement, drawing on the lived experiences of autistic individuals and their allies. It is useful for people with disabilities, advocates, and families seeking to understand the tensions between autism advocacy organizations and the need for authentic representation. The clear, critical perspective offers valuable insight into the neurodiversity movement's push for inclusion and respect, making it relevant for those navigating disability rights or policy.
Introduction
On December 7, 2015, the Autistic Self Advocacy Network (ASAN) issued the following statement regarding Autism Speaks' recent appointment of two Autistic people to its Board of Directors.
Main Content
On December 7, after 10 years of widespread criticism, Autism Speaks announced the appointment of two Autistic people to its Board of Directors.
The criticism from the self-advocate and broader disability community has focused on Autism Speaks' persistent and fundamentally flawed lack of regard for the voices of the autistic community, including:
- Profoundly harmful language and rhetoric in their advertising, fundraising, and "awareness" campaigns.
- Systematic exclusion of Autistic voices from places of leadership throughout the organization and its chapters.
- An imbalanced budget which allocates the majority of their finances towards biomedical research and fundraising, taking money from local communities yet investing little towards services and supports.
The appointment of two Autistic people to their board does not rectify this damage, nor does it signal an appreciation of the damage done, or a recognition of a need to fundamentally transform organizational priorities moving forward.
Unless and until Autism Speaks makes significant changes to their practices and policies of fighting against the existence of autistic people, these appointments to the board are superficial changes. Barring such changes, Autism Speaks will continue to fail to be an organization that can create real, positive change for the Autistic community.
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people.
ASAN's supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.
Insights, Analysis, and Developments
Editorial Note: ASAN's statement underscores a pivotal moment in autism advocacy, where token gestures toward inclusion are no longer enough to satisfy a community demanding real change. The critique of Autism Speaks' board appointments reflects a broader call for organizations to move beyond performative actions and embrace the principles of neurodiversity - valuing autistic people as they are, not as problems to be fixed. This article challenges readers to consider what true representation looks like and urges advocacy groups to prioritize the voices of those they claim to serve. For the disability community and its allies, it's a reminder that progress requires accountability, not just applause for small steps.
Author Credentials: Ian is the founder and Editor-in-Chief of Disabled World, a leading resource for news and information on disability issues. With a global perspective shaped by years of travel and lived experience, Ian is a committed proponent of the Social Model of Disability-a transformative framework developed by disabled activists in the 1970s that emphasizes dismantling societal barriers rather than focusing solely on individual impairments. His work reflects a deep commitment to disability rights, accessibility, and social inclusion. To learn more about Ian's background, expertise, and accomplishments, visit his full biography.