Controversies Surrounding Autism Speaks By Bob And Suzanne Wright

Autism Speaks, founded in 2005 by Bob and Suzanne Wright, has emerged as a prominent organization dedicated to raising awareness, funding research, and advocating for individuals with autism spectrum disorder (ASD) and their families. Despite its apparently innocent intentions, Autism Speaks has found itself at the center of several controversies that have sparked heated debates within and outside of the autistic community. This essay aims to delve into the controversies surrounding Autism Speaks, exploring its history, the criticisms of its approach to autism advocacy, and the perspectives of those directly impacted by the actions of this charity.

The first, and most long-standing, controversy of Autism Speaks is its absence of autistic individuals

This lack of representation results in a disconnect between the organization's objectives and the actual experiences of autistic people. Many autistic people condemn Autism Speaks for speaking over autistic individuals rather than amplifying their perspectives; as stated in a PROG article written by James Morales, “The group isn’t focused on making the world more accessible or producing a place in which autistic people are allowed to speak,” (Morales, 2022). The exclusion of autistic voices from these decision-making roles is most noted in the symbol Autism Speaks uses to represent itself, a puzzle piece. Criticism for this symbol had been perpetuated as Autism Speaks became more well-known. As stated in an article on Cross River Therapy, “... the puzzle piece implies that individuals with autism are ‘missing’ or ‘incomplete’ and need to be ‘put together’ or ‘solved,’” (Zauderer, 2024). Another glaring issue that proves Autism Speaks’ dismissal of autistic voices is their continued use of the term Asperger’s Syndrome. Asperger’s is a previous diagnosis that has long since been removed from diagnostic criteria due to Hans Asperger’s, who the disorder is named after, practice of

This portrayal perpetuates negative stereotypes and fosters a climate of fear and pity, rather than understanding and acceptance. “We don't want to be portrayed as burdens or objects of fear and pity,” (Ne’eman, 2009) famous autism rights advocate Ari Ne’eman states. By framing autism in this way, Autism Speaks reinforces the perception of autistic individuals as burdens rather than people. This stigmatizing narrative can have detrimental effects on the self-esteem and well-being of autists, contributing to social isolation and discrimination. The allocation of funds by Autism Speaks has also been a subject of scrutiny within the autistic community. They argue that the organization disproportionately prioritizes research aimed at finding a cure for autism whilst neglecting critical areas such as support services, education, and employment opportunities for autistic individuals. This skewed use of funding reflects a narrow focus on biomedical research at the expense of holistic approaches to addressing the needs of the autistic community. This emphasis on finding a cure perpetuates a