Autism Speaks and the Controversies that Follow it

By Dalton Dahl

Bob and Suzanne Wright founded the organization Autism Speaks in 2005 after an autism diagnosis of their grandson. The organization centered its work on large scale biomedical research, national awareness campaigns, and policy advocacy [1]. Bob Wright's position as a former NBC Universal executive allowed Autism Speaks access to a large media platform and an influx of major donors from its genesis. Within two years, the organization merged with three established institutions: the Autism Coalition for Research and Education, the National Alliance for Autism Research, and Cure Autism Now. This merger quickly made Autism Speaks the largest private autism research and advocacy group in the United States [2]. 

Autism Speaks' early focus on finding a "cure" for autism drew criticism from autistic self-advocates and scholars. Many argued that all too often, autism charities like Autism Speaks, "spoke for" autistic individuals without including them in decisions, as well as framing autism as a disease to eliminate instead of a difference of understanding [3]. This was apparent even with leadership within the organization, which had no autistic representation on either the board or senior positions [4]. The public also took notice of these discrepancies, with campus newspapers and internet blogs accusing the organization of speaking over autistic voices and profiting from pity  [5].  

The organizations video titled I Am Autism posted in 2009 became a defining  controversy. The production portrayed autism as a threatening, malevolent force; the  narrator making claims of ruining marriages, splitting families, and "[Autism] will bankrupt you for [its] self-gain." Advocacy groups like the Autistic Self Advocacy  Network (ASAN) condemned the campaign as fear mongering and dehumanizing [6]. Although Autism Speaks later removed the video, it left a lasting mark on the organization's reputation.  

This sustained criticism created a feedback loop. Public pressure pushed Autism Speaks to defend itself, clarify its goals, and adjust its messaging. The removal of the I Am Autism video, the shift in mission language, and the publication of response pages all came after waves of backlash. 

In 2016, Autism Speaks removed the word "cure" from its mission statement, hoping for a shift towards improving quality of life rather than the eradication of autism [7]. Since then, the organization has emphasized inclusion by publishing new materials  on representation and outreach [8]. Continuation of the endorsement of Applied Behavior Analysis (ABA) as an effective therapy now comes with a warning against harmful or unethical practices. On genetics, the organization rejects claims of eugenic  intent and frames research as a way to personalize healthcare and support [9]. 

Autism Speaks size and influence quickly ascended after its establishment, making it a flag-bearer for research and advocacy, but also made its controversies intensely more public. The vocal outcry forced an evolution in the organization. Despite the efforts made by the organization, its critics remain cautious, arguing that its changes are incomplete and that doubt of their intent and questions involving its leadership persist. The history of Autism Speaks shows how advocacy groups can be reshaped by the public response. It also demonstrates the continuing tension between organizational power and authentic representation from the communities being served.

Bibliography 

Adam Rosenblatt. “Autism, Advocacy Organizations, and Past Injustice.” Disability  Studies Quarterly 38, no. 4 (2018). https://dsq-sds.org/article/id/1477/.  [3]  

 Autism Speaks. Autistic Representation. Accessed September 24, 2025. https:// www.autismspeaks.org/autistic-representation.  

[4], [8]  

Autism Speaks. Our Evolution. Accessed September 24, 2025. https:// www.autismspeaks.org/our-evolution.  

[1], [2]  

Autism Speaks. Research and Eugenics. Accessed September 24, 2025. https:// www.autismspeaks.org/research-and-eugenics.  

[9]  

Autistic Self Advocacy Network (ASAN). “Horrific Autism Speaks ‘I Am Autism’ Ad  Transcript.” September 25, 2009. https://autisticadvocacy.org/2009/09/horrific-autism speaks-i-am-autism-ad-transcript/.  

[6]  

Daily Collegian. “The Autist Papers: The Problem with Autism Speaks.” Daily Collegian,  May 3, 2023. https://dailycollegian.com/2023/05/the-autist-papers-the-problem-with autism-speaks/.  

[5]  

Diament, Michelle. “Autism Speaks No Longer Seeking Cure.” Disability Scoop, October  14, 2016. https://www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer seeking-cure/22939/.  

[7]