Building bridges: Collaboration across the autism community

Source: [Spectrum News, | October 24, 2023]

Illustration by Saiman Chow

Much attention has been paid recently to conflict within the autism community, between autistic adults and parents of profoundly autistic children — from a piece in Nature in May to a Spectrum article on the topic in January to a 2021 post on the “Today Show” blog about the “war” between these stakeholders.

Though it’s true that interactions across this fault line, particularly on social media platforms, can be extraordinarily hostile, it has been our experience — as an autistic adult and the parent of a profoundly autistic 24-year-old son, respectively — that the real world looks different. Many autistic adults and parents are dismayed by contentious online discourse and want to collaborate, and we know there are people in both “camps” who are invested in improving the lives of everyone in the community.

So we embarked on a totally unscientific experiment. Samantha (Sam), who is autistic, interviewed three family members of profoundly autistic people: Colin, 38; Jonah, 65; and Michelle, 55. Amy, who has a profoundly autistic son, interviewed three autistic adults: Karl, 67; Abe, 25; and Sarah, 32.

Our sample, we freely admit, was completely biased. First, the interviewees were either known to us personally or introduced through friends. But more importantly, we intentionally chose to speak with parents and autistic adults who are either invested in reaching across this divide or already doing so by volunteering their time working alongside diverse stakeholders for a range of state and national-level organizations.

Our goal was to understand and articulate the common ground that motivated those empathic interactions. As psychologist Adam Grant wrote in his book “Think Again,” finding commonalities is key to reducing vitriol, preventing dehumanization and shaping more productive conversation. (Unsurprisingly, when polarized groups launch attacks, it only exacerbates the problem.) And we did find several areas of alignment between our two sets of interviewees, despite their different perspectives and experiences.

Though this piece reflects the viewpoints of only eight people, we feel it is representative of many others. There is real suffering in the autism community, and most stakeholders are committed to ameliorating it, even if the fear of being attacked keeps some of us from wading into social media battles. We hope this offers a starting place for greater dialogue and collaboration.

The parents and other family members we spoke with were bewildered at the claim, found in some corners of the internet, that “there is no such thing as severe autism.” For these caregivers, their child’s intellectual disability, minimal language and challenging behaviors are not mere differences but part of a condition that, according to Jonah, “dramatically impacts function.” Colin reported that his nephew’s cognitive impairment is severe enough that he doesn’t understand what autism is, never mind having the ability to claim it as an identity. In fact, family members considered trait severity to be the key driver of quality-of-life outcomes — not just for their autistic loved ones but for parents and siblings. Jonah quit his job, for example, because his son required intensive, round-the-clock care.

Our autistic interviewees agree that there are qualitative and quantitative differences between the two ends of the spectrum. Karl, a retired electronics engineer, said, “How can I, with my two master’s degrees, compare myself with someone who requires round-the-clock attention for the rest of his life?” Abe, a life-skills teacher, echoed, “I don’t think that it’s fair to lump people all together … My story, on its own, doesn’t stand for the profoundly autistic.”

Importantly for future directions, our autistic interviewees’ position on acknowledging severity level — which Karl described as “common sense” — was shaped by their personal experience with profoundly autistic people. Karl’s girlfriend has an autistic and intellectually disabled grandchild; Abe worked with this population at a summer camp, where he had to “worry about campers ending up in the pool or lost in the woods.” Getting to know these campers taught him the dangers of taking “a one-size-fits-all approach to everyone on the spectrum.”

Sarah, an autistic therapist, credits her job working with autistic people with extreme behavioral disturbance at a state hospital with “open[ing] my eyes.” She described seeing people with aggressive or self-injurious behavior, “people who were in restraint and seclusion because they were a threat to themselves or other people,” although she was quick to clarify that she believes restraint should be used only in cases where nothing else works, and she is completely opposed to seclusion. “I think it’s pretty easy to dismiss those cases as rare, or beyond rare, one in a million, and I don’t think that’s true. It’s easy to say that you can love and understand someone out of self-destructive behavior — and you can keep thinking that, as long as you never meet anyone like that.”

All of our interviewees identified the development and accessibility of appropriate services as the most pressing need facing the broad autism community. And they referenced many of the same targets: interventions for challenging behaviors such as aggression and self-injury; communication supports; and medical treatments for seizures, gut issues and sleeplessness.

That doesn’t mean the concerns of the autistic adults and the family members converged completely. The family members we spoke with emphasized services that those on the other end of the spectrum would likely never need, such as guardianship, as well as adult day and residential programs.

The fact that this isn’t happening, that so many autistic people aren’t getting enough or the right kinds of support, may be amplifying infighting in the community.

And the autistic adults didn’t want the very different challenges their peers face to be ignored. “Sometimes parents dismiss some of the struggles that autistic adults have,” Sarah noted. “They’ll say, ‘You don’t understand because you can do this; you can do that; you can do all these things.’ They imply that our lives are very easy, and I would argue that they’re very much not easy. That’s why there’s a high rate of suicide in the autistic adult population.” Recently, vocational support has become a focus of her practice, specifically “how to make work more doable for autistic people.”

Karl concurred that increasing employment opportunities and support is of utmost importance: “10 on a scale of 1 to 10.” Grateful that he found a meaningful career in a field that celebrates his strengths while accommodating his lack of social skills, he reflected, “My story could have turned out very differently.”

Though we understand our sample size is small, we were still surprised to find our interviewees all share an impatience with the language battles currently raging on social media and elsewhere. “Even I have more serious concerns than whether someone addresses me as an autistic person or person with autism,” Karl said.

“To each their own,” Abe agreed. “Let’s get to the services; we can talk about this after we resolve the real issues.”

For Sarah, what matters most is the lack of consensus, even among autistic self-advocates: “I used to think of [language debates] as more important, but now I’m not so concerned. I work now with a ton of autistic adults who prefer to say they have autism rather than that they’re autistic … I don’t feel like I need to police people and what they do with their language.”

The family members we spoke with also consider the language battles the least pressing of the issues facing the autism community, and they framed these as yet another obstacle to the necessary conversations that should be happening between parents and self-advocates. “Censorship makes it hard to connect and share the relevant details in an easy way,” Colin said. “I hear other parents struggling to describe their child without using functioning levels.” Jonah reported that funders and researchers have reduced the scope of their efforts because they have been so intimidated over their language choices. Michelle is saddened by attempts to enforce rigid rules in such a diverse community. “We all should have the right to disagree without being considered disrespectful,” she said. “We should listen to each other’s perspectives without judgment.”

This is not to say that the infighting in the autism community will be easy to fix. But the focus on these battles has obscured the collective concerns of many parents and autistic adults alike. As Abe said, “We all share a common purpose,” which Colin clarified: “to provide the best support and resources for people with autism.” The fact that this isn’t happening, that so many autistic people aren’t getting enough or the right kinds of support, may be amplifying infighting in the community. “We’re both [parents and autistic adults] worried about our stories being minimized,” Abe said. Sarah agreed: “Everyone’s terrified.” But for our interviewees, it was important to frame this universal fear as another part of the common ground instead of a driver of competition and conflict. “There shouldn’t be another side,” Karl insisted.

We couldn’t help wondering whether our interviewees had any thoughts about how to begin to repair the rift in the autism community, especially online, because autistic adults and parents of profoundly autistic children both value digital spaces. All our interviewees agreed on the need for more nuanced and thoughtful conversations, on social media and elsewhere. And all identified a critical predicate to this change: the need to respect the limits of our own experience, and the acknowledgement that no one voice can speak for the entire community.

“No, I don’t believe my experience gives me any insight into profound autism; it’s very different,” Abe said. Michelle, the mother of two autistic children, made the same point from the opposite perspective: “I can’t speak for autistic people,” she said. “No one can really know what it’s like to be in another’s place.” And neither would dream of speaking over the other, they both said. “When people share their challenges, I empathize,” Michelle added.

“Questioning others’ lived experience is a form of gaslighting,” Abe cautioned. “I do not in any way, shape or form approve of the bullying. As soon as you resort to name-calling, you lost the argument.” Instead, these interviewees  asked that all stakeholders approach fraught online debates with humility. “That’s how we’ll make inroads,” Abe said. “By asking questions rather than insulting people. Not all roads are the same. That’s why we need to share our different stories.”

Samantha Easter is a senior communications specialist at Mountain America Credit Union in Salt Lake City, Utah, concentrating on diversity, equity, inclusion and belonging; personal finance; and professional development. Amy S.F. Lutz is a historian of medicine at the University of Pennsylvania in Philadelphia, vice president of the National Council on Severe Autism and the parent of a profoundly autistic son, Jonah, 24.

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