Autistic self-advocates are changing discussions that, they say, have historically been “about us, without us.”
(Published September 19, 2019) An autistic “Sesame Street” muppet is caught in a conflict between the most prominent autism organization in the United States advocating for early intervention, and autistic adults who see the condition as a difference, not a disease needing to be cured.
Since 2017, a Muppet named Julia has given children on the spectrum a role model and helped parents and peers understand the condition. The red-haired, green-eyed 4-year-old flaps her hands when she gets excited, cries when loud noises overwhelm her, strokes her stuffed rabbit for comfort and communicates in her own way and her own time, sometimes using a communication device.
Autistic self-advocates, who were consulted in her creation, have applauded how she is not only depicted but also accepted by other human and Muppet characters on the show.
Over the summer, Julia became embroiled in a controversy over a partnership with Autism Speaks, an influential and well-funded organization that some autistic adults say has promoted ideas and interventions that have traumatized many people in their community.
The Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people, announced it had cut ties with “Sesame Street” after the children’s program partnered with Autism Speaks to make the Muppet the face of a public service campaign encouraging early screening and diagnosis of autism. ASAN has accused Autism Speaks of using “language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families.” It contends that resource materials from Autism Speaks encourage parents “to view autism as a terrible disease from which their child can ‘get better.’ ”
“I think part of why people feel so let down right now is that ‘Sesame Street,’ as a show, is very, very personal to a lot of our members and a lot of people in the autistic community,” said Julia Bascom, an autistic self-advocate and executive director of ASAN, explaining that many autistic people have relied on the show as a learning tool.
Autism Speaks denied ASAN’s characterization of its approach, or resource materials. Lisa Goring, Autism Speaks’s chief strategic initiatives and innovation officer, said the group’s job “is to empower families with the information they need so their child can be successful.”
Jeanette Betancourt, senior vice president of U.S. social impact at Sesame Workshop, said Sesame is “saddened” ASAN has ended its relationship with the children’s program as it has been “incredibly supportive of our efforts along the way and of contributing to Julia.”
The controversy touched a nerve for many autistic adults who say they grew up being taught to conform to the world, rather than being encouraged to find their place in it.
Many of today’s self-advocates were children when autism spectrum disorder (ASD) was being described by some researchers and educators as an “epidemic,” scaring parents, some of whom accepted fraudulent claims that it was caused by vaccines and pursued physically and emotionally painful therapies promising a cure.
Some children with autism were trained to behave more like other children — told to make eye contact, mimic common facial expressions and suppress repetitive behaviors called stimming, such as hand-flapping, bouncing and toe-tapping. They say it induced anxiety and made them believe there was something wrong with them.
Some were put on special diets and treated for heavy metal poisoning, without evidence the unpleasant and potentially dangerous treatments had anything to do with autism.
Some were forced to drink bleach — a quack treatment the Food and Drug Administration warned against last month.
Now, this rising generation of autistic adults is joining others in the movement to change autism discussions that, they say, have historically been “about us, without us.” More and more, they are influencing policies, leading protests against misleading anti-vaccine messages and the marketing of quack treatments, pushing for fair representation in media coverage, movies and TV shows, such as “Sesame Street,” and helping to reshape language and outdated opinions about what autism really means. (For example, many self-advocates ask to be called “autistic people” rather than “people with autism” because the latter implies a disability.)
More and more autistic people, such as 16-year-old climate change activist Greta Thunberg, are taking pride in their identities. This month, she called autism her “superpower.”
“There are a lot more us who are openly autistic and open about our opinions about the direction of autism research and services,” said Ari Ne’eman, an autistic adult who co-founded ASAN.
“The movement has a tremendous amount of visibility and legitimacy now,” Ne’eman said. “It is no longer as terrifying, or revolutionary a thing as it once was to simply be open about the fact that you’re an autistic adult.”
One leader in the movement, Lydia X.Z. Brown, an autistic attorney based in the Washington area and founder of the Autistic People of Color Fund, grew up at the height of the autism panic. Brown, who prefers the pronouns “they” and “them,” said they were diagnosed as autistic at 13 — the year ASAN was campaigning against advertising that used ransom notes to portray autism as an abductor stealing children.
“One of the first things I remember being told was that it would be a bad idea to tell other kids at school because then they just might bully me more,” Brown said. “So for a couple of years there, I internalized the most pervasive messages about autism and really all disabilities.”
Many autistic adults, even those who went undiagnosed for years, say they, too, grew up feeling alone and forced to conform to societal expectations.
Jillian Parramore, an autistic person in California, said she was diagnosed with autism when she was 4 and began therapies. One of the most common, Applied Behavior Analysis, is stigmatizing and traumatizing, self-advocates say, because it teaches autistic people to mimic neurotypical behaviors that are not natural to them. Parramore said providers would come into her preschool class to teach her how to “walk and talk and breathe like a human — one that they understood to be human.”
Parramore, who did not fully speak until she was 10, said trainers would also force her to practice facial expressions in the mirror to convey emotions, saying, “show me happy, show me sad, show me angry.”
“To this day, I get really freaked out when I see a mirror in public because I immediately want to go through the facial expressions,” she said. “I’ve even learned to put on lipstick without a mirror because it’s too much for me.”
Self-advocates in this rising generation say that they have found their community online — many using the hashtag #ActuallyAutistic to share such experiences, insights and frustrations, to make friends and to fight for change.
Rebecca Long, an autistic person from North Carolina who also prefers the pronouns “they” and “them,” said they were not diagnosed until age 18, “so it took me a while to find autistic spaces.”
“I didn’t really connect with other autistic people, except for online,” Long said. “I started finding other people who had some of the same experiences as me. And for a while, I thought of it as an experiment: If I was actually autistic and I acted autistically — maybe I stimmed, maybe I did something else — how did that make me feel? Did that make me feel more comfortable? And now it’s something that is much more comfortable to me.”
Steve Silberman, author of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity,” said this “rise in popularity of social media has also raised the profile of the autistic self-advocacy movement.”
“We can have a protest and we can have petitions signed and never leave our homes, which a lot of us have trouble doing,” Parramore said.
They advocate for services and support like occupational therapy, speech pathology, and augmentative and alternative communication, especially for those who are nonverbal or need assistance communicating. They also want better inclusion in schools and greater availability of supportive therapies in the general community.
“We are a generation that has experienced the harms of having autism policy research and services being something about us, without us, and we have sought to take our rightful place in the national conversation on autism with the goal of ensuring future generations will not have to go through what we had to go through,” said Ne’eman, who served as one of President Barack Obama’s appointees to the National Council on Disability.
Many self-advocates credit autism-rights activist Jim Sinclair for starting the movement, with a pointed open letter to parents in 1993 that criticized the culture surrounding autism and the emphasis on a “cure.”
The essay, “Don’t Mourn for Us,” steered the conversation from grieving parents to their children: “We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived.
“Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you.”
Self-advocates say Sinclair’s words planted a seed for what has become a worldwide movement advocating for neurodiversity.
John Elder Robison, an autistic person and neurodiversity scholar at the College of William & Mary, said it is important for autistic people to speak for the community, including those with intense support needs, to “show the world that we have voices.” He added, “By speaking for ourselves, we assert our essential humanity and human rights.”
What do autistic people want to say about autism?
“That the stereotype of autistic people being emotionless has done a lot of damage, that autistic people actually feel emotions really deeply and can feel a lot of empathy — maybe more empathy than a neurotypical — and that many of us grew up feeling excluded and were very aware that we’re not always welcome,” Long said.
“That it’s not a tragedy and that we’re not a burden,” said Courtney Johnson, an autistic person from Tennessee. “We just want to be loved and to be able to enjoy and experience life like anybody else. We’re not defective, we’re not broken, we’re just us.”
“That there’s no one-size-fits-all; it’s a spectrum. And that spectrum creates that beautiful neurodiversity that should be celebrated,” Parramore said. “We aren’t a negative. We have so much offer — if somebody just said, ‘What do you want to say?’ ”