Neurodiversity strives to amplify autistic voices
People with autism, their families, and advocacy groups foster a more inclusive society
May 9, 2021
The last days of April mark the end of Autism Speaks’ World Autism Month, dedicated to spreading acceptance and delivering services to the autistic community and their families.
However, others view autism as an alternative perception of the world, a unique perspective to be celebrated rather than cured. These ideas have become the pillars of the neurodiversity movement.
“At its most basic level, neurodiversity says that all brains are neutral and that all brains are beautiful, regardless of their differences,” said Noor Pervez, the community engagement coordinator at the Autism Self Advocacy Network (ASAN). “We’re certainly not the ones who created the movement, it’s always been there, but we intentionally work to be an outgrowth of its ideas.”
Controversy within advocacy communities
The term neurodiversity was officially coined in 1998 by Australian sociologist Judy Singer, according to Steven K. Kapp’s book Autistic Community and the Neurodiversity Movement. ASAN has worked to weave this ideology into every part of their work, from policymaking to their motto, “Nothing about us without us.”
“A brain not functioning in the way that everyone else’s does is not an excuse for eugenics, a lack of human rights, or pushing people into institutions,” Pervez said.
As Pervez referenced, organizations have faced criticism in the past 20 years for vilifying autism spectrum disorder (ASD) instead of working towards acceptance.
Founded in 2005 by Bob and Suzanne Wright, advocacy group Autism Speaks’ revised mission aims to support people with autism and their families through increasing understanding and enabling access to screening.
Initially, the organization aimed to research genetic variants to find a cure or treatments for autism. They released a commercial entitled “I am Autism” in 2009. In voiceover, the commercial said, “I am Autism […] I work faster than pediatric AIDS, cancer, and diabetes combined […] if you are happily married, I will make sure that your marriage fails.”
A notable initial investor was Bernard Marcus, the co-founder of Home Depot. Marcus won the William E. Simon Prize for Philanthropic Leadership for his involvement with Autism Speaks in 2012. On an administrative level, Marcus, doctors, and family members of people with autism fill most of the leadership roles in Autism Speaks. As of 2020, three neurodiverse people had served in any of the organization’s executive positions.
“We’ve seen autism portrayed by different groups as scary and bad, but those narratives were coming from people outside the community. The global perception of autism needs to include autistic people because you can’t have autism without us”, Pervez said. “This starts by putting autistic people of all backgrounds into positions of power.”
In response to its controversial history, Autism Speaks is working to adapt its organization to best serve the autistic community.
“For the Record,” a page on their website, provides information on their opposition to eugenics and specifics on budget allocation and funding.
“Since Autism Speaks was founded, research has shown that there is no single autism. Science also tells us there will be no single cure. Today, Autism Speaks is not looking for a cure. In fact, in 2016, the word ‘cure’ was removed from our mission statement,” said Kelly Bertenthal, Autism Speaks’ senior area director in Northern California.
Additionally, Autism Speaks launched their kindness campaign designed for the classroom, home, and work environments. Its goal is to create a more empathetic and understanding society.
This starts with respect.
Terminology and the media
Just like pronoun usage helps people of all different genders feel seen, appropriate autism terminology is a critical ingredient in promoting neurodiversity.
Terms like high-functioning or low-functioning, commonly associated with the autistic community, are being abandoned in favor of more supportive language.
“These phrases were created by people who are seeing things from the outside in an effort to categorize what they perceive as being closer or farther away from normal,” Pervez said. “Someone may see a person that communicates atypically and categorize them as low-functioning, which is kind of saying that that person needs someone else to make choices for them and that their life is impaired by how their brain works.”
Educating the public about acceptable terminology and neurodiversity has created a need for media that portrays characters with autism in various ways.
Television shows like “Atypical,” “The Good Doctor,” and “Everything’s Gonna be Okay” are centered around autism with characters that have many traits in common, which often discounts the true diversity of neurodivergent people.
“We have a handful of portrayals of autism, and they all tend to be the same character subtype of the very smart white dude, or sometimes the very smart white lady, which is only representing a small portion of the autistic community,” Pervez said.
By omitting stories about people with different needs played by actors with autism, the public is consuming a stereotype that ostracizes people that do not fit that assumption.
“If you’ve met one person with autism, you’ve met one person with autism,” Bertenthal said. “Each person is different and has different experiences, which should be reflected in shows and movies.”
In addition to the inclusion of autistic characters on screen, actress and director Maureen O’Neill emphasized the importance of neurodiversity behind the curtain or camera.
“It takes a lot of nuance to create characters that are fully developed and don’t rely on stereotypes,” O’Neill said. “Having autistic writers, directors, and actors on the creative team would be a step in the right direction.”
O’Neills’ daughter, Charlotte, was diagnosed with autism around age three after receiving a recommendation for an assessment from her preschool teacher.
In total, Charlotte’s diagnosis took around six months, including waiting lists, interviews, and exploring schools. The journey provided O’Neill with a new outlook on ASD and insight into how communities can become more autism-friendly.
“There’s nothing wrong with Charlotte. She communicates differently, and she interacts with the world differently, but It’s almost like she’s a zebra and I’m a panda,” O’Neill said. “As a society, I think we need to stop looking at autistic people as if they’re wrong and slow down. The more mindful we are, the more space we have for tolerance.”