The month of April has been designated by Autism Speaks as World Autism Month, and while it’s great to bring awareness about Autism Spectrum Disorder (ASD), Autism Speaks isn’t the organization to go to for that awareness or support.
The organization itself, which is one of the largest nonprofits related to autism, is nothing short of ablest, noted for how it’s primarily geared toward parents who want to “fix” their child instead of helping people with autism and their families who want better understandings in how to accept, advocate, and communicate with them.
At last check, there was a grand total of one member on the organization’s board of directors who has autism, John Elder Robinson, and he resigned in 2013. This means they’re making decisions about people with autism, and the future of autism, without really consulting anyone who has ASD.
Autism Speaks sees autism as a disease that needs to be cured, instead of seeing it for what it really is, a neurological and developmental disorder, and continues to promote harmful policies and so-called treatments like Applied Behavioural Analysis and institutionalization. The organization continues to fund biomedical research focusing on prenatal testing, like the one for Down’s Syndrome, and identifying the causes of autism, instead of research that aligns with the priorities of the autistic community and would help improve quality of life. Advocates have criticized Autism Speaks for this, claiming it has a eugenics-based mission.
Speaking as a neurodivergent person (ADHD), views like this are problematic at the very least. Yes, managing the symptoms of autism can sometimes be very stressful, but that doesn’t mean people with autism don’t deserve to exist.
While Autism Speaks is the most known organization for resources on autism, it isn’t the only one.
Cassandra Crosman, creator of the website In the Loop About Neurodiversity, has listed a variety of autistic advocacy organizations in its place. These groups include the Autistic Self Advocacy Network (ASAN), a nonprofit organization, a disability rights organization in the United States run by autistic people that advocates for public policies that benefit autistic people and other neurodiverse and disabled people, as well as organizing protests against those that do not; Autistics for Autistics Ontario(A4A), a Canadian affiliate with ASAN focused on improving rights and opportunities for autistic people and meeting the needs of the autistic community, particularly regarding school inclusion, employment, housing, and access to medical care; and Autistics United Canada, which has a focus on building connections and community of autistic people and fostering autistic identity and pride, and advocate for improving education and accessibility to healthcare for autistic people, as well as ensuring that autistic people are involved in public policy decisions made about them.
Crosman, who is herself autistic, has a Bachelor of Science degree in Humanities from Western Oregon University and is a current graduate student at the university, studying Special Education. She seeks to bring autistic representation and perspective to the education field.
Ableism has no place in the neurodivergent community, or anywhere for that matter, and an organization that holds views like the ones listed above should not be allowed to advocate for a community it disregards.