Partial representation might be seen as far back as the birth of the neurodiversity movement. In 1993, at the International Conference on Autism in Toronto, Canada, an autistic person named Jim Sinclair took the stage to deliver a presentation. Sinclair’s speech, titled, “Don’t mourn for us,” is often credited with kicking off today’s self-advocacy movement. The speech began with the statement that “parents often report that learning their child is autistic was the most traumatic thing that ever happened to them,” and Sinclair went on to describe the “grief” parents felt as the loss of “the normal child” they hoped for but who “never came into existence.”
Yet a child did come into existence — an autistic one — Sinclair said, reminding the audience that that child is “here waiting for you.”
It was a watershed moment, and in the nearly 30 years since that conference, the neurodiversity movement has swelled. But if there is a fly in the ointment of that speech, it is the reality that some autistic people lack even basic verbal communication skills, never mind the gift for prose Sinclair showcased while addressing a crowd and speaking about “us.”
McCoy said that to avoid partial representation in autism, a group would need to interact with those who are able to articulate their own interests, but also those with the “most profound autism” and “patients and caregivers,” as well as doctors and others. If a group relies solely on “engagement with autistic self-advocates to understand the interests of the broader autistic population,” then it “carries a risk of bias,” the paper states.
The paper also suggests that partial representation has long been a part of the broader autism community. “At least in its early days, Autism Speaks failed to engage appropriately with autistic self-advocates,” the authors wrote, “while ASAN [the Autistic Self Advocacy Network] has failed to engage appropriately with parents raising concerns on behalf of their children.”
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oe Gross is director of advocacy at the Autistic Self Advocacy Network (ASAN). She is autistic and has worked in advocacy for more than a decade, including with the American Association of People with Disabilities. She also founded the Disability Day of Mourning in 2012.
The day is meant to commemorate people with disabilities who were killed by a parent or other household member through direct action — or sometimes inaction, such as neglect. The group behind it has archived hundreds of names, going back as far as 1980. The event that spurred the founding occurred on 6 March 2012, when a woman named Elizabeth Hodgins, in Sunnyvale, California, shot her autistic son George, 22 years old at the time, and then committed suicide herself. The husband came home to find the bodies.
This of course made the local news, and given that the mother was already dead, reporters tread lightly, carefully avoiding blame as they tried to explain how such a horrific thing could have happened. Newspapers relayed that George was “low functioning and high maintenance,” and had limited use of language. Reporters wrote that he had formerly gone to an autism center but for a few months had been at home full time, often alone with his mother. Neighbors speculated that Hodgins was exhausted from this new, constant caregiving, and that she’d had a nervous breakdown.
Yet no one interviewed an autistic person. If they had — if they had spoken to Gross, for instance — they would have gotten a different view of things. They would have heard that the tragedy here was not that George was autistic, as the reporters seemed to suggest, but that he was murdered. They would have heard that George’s disability did not somehow make that murder more acceptable. And they would have heard that George’s death would be mourned by those who knew and loved him, that his life had value.
That line of thinking was nowhere in the media coverage. And it is exactly this kind of blindness from the mainstream majority that makes self-advocates as tenacious as they are. For decades in the medical arena, autistic people have been studied “in an extractive way,” Gross said. Scientists asked for genetic material, or a brain donation upon death, but wanted no input from autistic people on what to “do with those things.” The relationship was all take and no give.
This imbalance is partly what drew Gross into advocacy. ASAN has worked forcefully, often collaboratively, for change in the world of autism. The group has official positions on applied behavior analysis (ABA), genetic research and discrimination in health care, among many other areas, but ASAN understands that a key to advocacy is compromise, and that toxic behavior makes it easy for policymakers to ignore you.
So it is not ASAN that is comparing autism researchers to Nazis. That comes from legions of individual Twitter handles, Facebook accounts and online warriors whose power lies in their outraged tone and sheer volume. Many of these people are young, autistic and not particularly interested in hearing the nuances around scientific terminology or explanations on why all genetics is not eugenics. They have gathered online to fight against a world they feel has callously swept them aside for decades, and that sometimes includes non-autistic trolls and the parents of autistic children.
With good reason, for autistic self-advocates have countless moments in history to point to: the Willowbrook scandal; the use of “aversives” in ABA therapy; the ties between autism research and eugenics. Given that these things occurred within the past century, autistic self-advocates are correct in continuing to sound the alarm, said Ari Ne’eman, disability activist and ASAN co-founder. And anyway, there are technological advances today that need careful scrutiny. It’s possible there could be a prenatal test that “speaks to probabilities” for autism, he said, which could lead parents to abort autistic children. And, he said, if one considers the possible use of CRISPR technology to modify heritable genetic conditions, then the concerns of autistic people around eugenics are “legitimate.”
Autistic people and advocates are also keenly aware of where true power lies, and it’s not on Twitter. Shannon Des Roches Rosa is senior editor of Thinking Person’s Guide to Autism, a neurodiversity advocate and the parent of an autistic child. She said it is the biomedical community and its funders who hold the key to the future of autism research, leaving the “disenfranchised” autistic community with just its voice. It is unreasonable to expect that the voice will always be diplomatic, especially given that autism can be considered a social disability. “And sometimes,” she said, that voice will “come out as bullying. Because what other power do they have? I mean, they’re furious. But that doesn’t mean they’re wrong.”
Often what they are furious about boils down to money. Ne’eman said that the greatest return on investment for autistic people comes from services and quality-of-life studies, and those areas are “dramatically underfunded.” Indeed, the greatest portion (44 percent) of autism research dollars in 2018 went to questions around the biological aspects of autism, as tabulated by the U.S. Interagency Autism Coordinating Committee. The second-largest portion (about 20 percent) was “risk factors,” which encompasses both genetic and environmental concerns. That is more than 60 percent of funding dedicated to the causes of autism. Meanwhile, services and lifespan issues were allotted just 6 percent and 3 percent of funding, respectively.
Perhaps most angering for neurodiversity advocates, there has been little change in the pie portions over time. In 2008, 55 percent of autism research funding ($123 million) was pointed at risk factors and biology questions, whereas only 6 percent ($11.5 million) went to services and questions around the lifespan of autistic people. After a decade of shouting from neurodiversity activists, 63 percent of funding ($247 million) in 2018 went to risk factors and biology, but services and lifespan issues had moved to just 9 percent ($36 million).
Much of this imbalance comes from the existence of specific funders such as the Simons Foundation (of which Spectrum is a part, though editorially independent). The Simons Foundation Autism Research Initiative gave out more than $44 million in grants in 2021, aimed solely at understanding, diagnosing and treating autism. Neurodiversity advocates would like to see more going toward services and quality-of-life issues, but the portions of the pie are unlikely to change unless the U.S. government increases its funding or organizations such as the Simons Foundation reimagine their mission.
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et even the differing goals for research do not fully explain why neurodiversity advocates and researchers (and some parents) are so dug into their positions. That also comes down to matters of the mind.
Damian Milton is autistic, a senior lecturer in intellectual and developmental disabilities at the University of Kent in the U.K., and a consultant to the National Autistic Society. He’s also the father of more than one neurodivergent child. He is outspoken and active on Twitter, and for these reasons has faced his share of criticism — even from neurodiversity advocates, some of whom find him “not activist enough,” he said.
But he’s maybe best known for his paper on the double empathy problem, published in 2012. It has become a central tenet in thinking about how autistic people interact with the rest of the world. The paper states that whereas autism is often “defined as a deficit in ‘theory of mind’ and social interaction,” the double empathy problem posits that the communication and social difficulties of autistic people are “a question of reciprocity and mutuality.”
Milton wrote that although “it is true that autistic people often lack insight into [neurotypical] perceptions and culture,” it is “equally the case that [neurotypical] people lack insight into the minds and culture” of autistic people.
Neither group truly understands each other, he told me, and both cultures are more at home interacting with people like themselves.
He thinks this dual misunderstanding is partially responsible for tensions in the broader autism community. These two groups have “a totally different set of experiences and way of making meaning from those experiences,” he said, and added that “what’s bullying to one person is righteous anger to another.”
Miscommunication caused by the double empathy problem makes de-escalation harder. But so can the nature of autism itself. As Des Roches Rosa pointed out, autism is categorized as a social disability. And researchers have long suggested that inflexible thinking is a component of it. They are loath to point that out publicly when discussing today’s tensions, but some suspect that the logjam in dialogue has something to do with the characteristics of autism.
But there is another theory, too. Both sides openly acknowledge the online bullying. Yet neurodiversity leaders and social-media accounts with large followings have done little to curb it. That might be partially because muffling the anger seems pointless. Botha doesn’t believe “there is a tone that will particularly be accepted.” Autistic people are forever dismissed as too angry, too irrational, biased — easy excuses researchers use to “discount what autistic people are saying,” Botha said. So what is the point of trying for a more acceptable way of speaking? It won’t matter.
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t might be tempting to view the autism community as three distinct warring factions: autistic self-advocates, non-autistic parents and non-autistic researchers. It is not that simple. There are non-autistic researchers aligned with the neurodiversity movement; there are autistic applied behavior analysis therapists (see Divisions over ABA); there are parents of autistic children who support a mix of views. The messiness of the dynamics might make it seem even harder to come together.
Yet Milton believes a good first step toward better relations would be requiring young researchers to be trained on language use. If principal investigators are sending their Ph.D. students out to recruit participants or present work without knowledge of the current controversies or language sensitivities, then they are “setting that student up for quite a traumatic experience,” he said.
Experienced researchers agree with this. Anagnostou said it is up to the lead investigators and lab leaders to educate neophytes on language, what the current controversies are and what to expect from conference audiences. “As senior people, we owe our young people a little bit of a more sophisticated conversation about the implications of their work,” she said. It isn’t fair for young scientists to arrive at a conference and not know that neurodiversity advocates might shout from the audience or that “there are different points of view” about the words used in scientific presentations.
If these younger researchers were better educated, that could take some of the sting out of the room. Mostly, however, the feeling is that autism research is caught up in a moment, and the tension isn’t going to go away any time soon.
Boyd, the University of North Carolina researcher, is non-autistic. But he’s also a gay Black man, and he’s more than familiar with the ways in which minority communities fight oppression. He knows that without upheaval, nothing changes. “We’re going through a disability rights movement in autism,” he told me. “And I think those of us who are neurotypical are going to have to do a little bit of acceptance that we’re going to feel uncomfortable in this space right now. Because there’s a marginalized group who’s asking, rightfully, for their voice to be heard.”
In social and political movements, activists have a range of tools at their disposal. Collaboration is one, and groups like ASAN have used this to great effect. Confrontation is another tool. Social media has been a boon to communities of all kinds, including to the neurodiversity movement, but it has also made confrontation an easy tool to deploy. For some advocates, it can be as quick and simple as logging on, “metaphorically throwing rocks” for the cause, and then logging off, Gross said.
This article was originally published by a www.thetransmitter.org . Read the Original article here. .