I think we widely recognize the silos of information and perspective we now live in, as a society and as individuals. Hopefully, even given the benefits it sometimes has of fostering identity and a certain kind of community, we also recognize and acknowledge the injury this siloing causes—the disconnection between communities and people, the lack of dialogue and understanding, the judgment of others, the pervasive deficits in generosity of spirit and even basic kindness.
But still we choose it.
We choose to keep to ourselves—to our own group of whatever kind—what we have to share and teach, what we have to give. We only learn from people who largely share our own worldview, even as we judge others who do the very same thing while lacking our perspective. And so often we find them, too, at the very least, lacking.
We mostly don’t hear much of anything other groups and people outside our own circles have to teach or say, other than through the prism of ridicule or disdain in what’s shared by our group’s information gatekeepers. We are, then, at least, lacking.
We lack the attitude of and ability for perspective-taking that is a requirement of the most important kind of learning, as well as of genuine empathy and, ultimately, decency.
neurodiversity for all
We are blessed to live at a time when autistic adults teach about neurodiversity and inclusion, and when organizations made up of and driven by autistic adults are doing incredible advocacy. Many—not enough—families of autistics and professionals who work with autistic people do the same.
The best-known and most amazing neurodiversity advocates became such because they are passionate and smart. It’s not surprising, then, that as they grow in this work, as their voices reach out further and mature, they engage the political.
How could an autistic advocate not do so? Politics is deeply personal. Legislation, policies, and rhetoric regarding access to and quality of healthcare, housing, transportation, nutrition, and education, regarding civil rights and equitable treatment, and regarding what does and does not constitute disability, abuse, or hate speech are just some of the ways in which government representatives and officials affect autistic lives. And individual and collective stories regarding such things and their impact are vital to a meaningful politics.
Still, we all have choices to make and responsibilities to consider.
I did a podcast recently, and afterward the host asked for a list of online platforms through which people can better learn about neurodiversity and connect to resources. I thought about the leading relevant organizations and sites and their social-media feeds.
And I realized just how integrated much neurodiversity advocacy is with progressive political ideology—and how that is exclusionary, sometimes self-indulgently and unnecessarily so.
Now, as it happens, these political views are often more in line with my own than not. But an existential question needs to be asked by every content creator, curator, or aggregator about that content: why are we writing or streaming video or sharing cartoons or whatever it is we do?
If it’s simply to share—to express ourselves authentically in every aspect, to make diary entries or share random thoughts or heartfelt beliefs or wild passions of whatever stripe, and to receive affirmation of our beliefs and identity—that’s wonderful. Everyone has the right to do that kind of creation and writing, or collecting, reflecting every aspect of their full selves and to create or participate in communities that do so, as well. In no way do I wish to suggest otherwise. I’ve done that myself sometimes with the current iteration of this site, albeit with some regrets.
People who for a long time were denied voice are finding voice. That’s amazing and essential.
But Republicans have autistic children, too.
What I mean by that shorthand is: where else are non-progressives going to get information about neurodiversity other than from neurodiversity advocates?
Most parents and families of young—much less newly diagnosed—autistic children aren’t going to learn about neurodiverse perspectives from mainstream medical practitioners, therapists, educators, or organizations. The idea of neurodiversity very likely won’t even occur to them, then. (If you’re unfamiliar with my writing, for context please read Autism 101: Hating Your Autistic Child from 2014 or, even more relevantly, Accept or Reject: Part 1 of a Talk on Autism from 2015.)
And there they will be, raising their autistic children lacking neurodiverse approaches as an option or possibility.
And there their children will be, later, writing or speaking about how they were parented with rejection and the harm done to them.
We can choose to make that less likely.
I believe hearing about neurodiversity from the perspectives of autistics, family members, and professionals means parents will be more likely to accept their children as they truly are, as whole selves, with autism being a descriptor that makes them no more or less or different, but something that is understood as simply an integral aspect of their identity. In turn, those same parents will have a far greater likelihood of setting parental intentions and seeking out appropriate supports—working with and guiding therapists and educators—that actually support their children as full human beings rather than trying to turn them into other people and, in so doing and in the most fundamental way, rejecting them.
These parents will also be far more likely to listen then not just to the voices of and lessons shared by autistic adults, but far more closely to their own children, hearing them, facilitating their communication, whether those voices come in words or wordlessly with picture communications or in their actions, feelings, choices, or changes.
Might some people be more open to such perspectives and approaches than others? Sure. But I’ll be honest: on the whole, I have observed politically liberal parents to be at least as likely to seek out the most intensive “interventions”—the “cure” approaches decried as most abusive by adult autistic writers—as politically conservative parents.
As well, I believe it’s as easy to persuade a parent with conservative politics to accept their child and love them fully as autistic human beings as it is to persuade those with liberal worldviews. They’re all parents who want to do the most loving thing. And if I’m wrong, and there are fewer politically conservative parents open to that shift, so what? Those fewer ones—or even those few—still need to be reached.
Asking them to enter into and gather information in an information ecosystem in which their political beliefs, as well as party and political representatives—all of which are growing aspects of personal identity in the contemporary social-media age—are ridiculed and condemned is unrealistic.
So, that’s a choice autism and neurodiversity platforms get to make.
allies and echo chambers
I have a correlate to share. North Carolina schools are badly underfunded and underperforming compared to the rest of the country, now ranking between 40th and 50th by most educational metrics. Republicans took over the legislature in 2010, and funding and those metric outcomes—which were previously mostly mid-range nationally—fell dramatically.
In 2013 my son, Nicholas, and I participated in Asheville in the March for Teachers held statewide. The event organizers and participants conflated a host of progressive issues into the march, in rhetoric, chanting, and signage, reflecting the alliance between the teachers association and the Moral Monday marches being held across the state during this period.
Again, I personally likely agree more than not with that broader agenda. But the event was ludicrously self-defeating. I wrote to the organizing teachers group afterward: Most Republicans send their children to public schools. Some of them are the often conservative religious people who, say, volunteer their time on weekends to support disabled children like my son in therapeutic recreation leagues. They want good schools and a quality education for their children no less than liberal parents. They were equally jarred and concerned by the decline of public schooling that was occurring in the state, regardless of what policy notions and preferences they had beforehand.
But Republican parents had no place at this rally without compromising their own broader beliefs and sense of identity. They wouldn’t—even couldn’t—participate in a rally with signs and chants condemning Republicans (that is, themselves) and championing a host of progressive policy and social perspectives with which they passionately disagreed.
A rally that focused clearly on the organizing issue—funding increases for public schools, including increases in teacher pay—with explicit welcome and inclusion for people of all political persuasions could have been consequential. Republican legislators might have paid greater attention to marchers with signs saying things like “Republicans for Public Education!” than to a teachers march teeming with liberal parents and activists who would never vote for them anyway and who weren’t even involved in their primaries.
I wrote all this to the organization, which, as expressed in a very terse reply, disagreed.
The rally was well-attended. It got big play on news media and social media. Everyone at it felt pretty good about themselves.
Republicans still control both chambers in North Carolina. Public schools in the state are still badly underfunded and underperforming. It’s six years later.
Someday, no doubt, that will all turn around. In the meantime, especially in economically disadvantaged areas of the state, good teachers will continue to leave or simply not enter the profession and children will grow up less well educated than they ought to have been.
But, hey, we have our allies.
Why are we doing what we do?
The contemporary progressive notion of “allies” commands purity. Otherwise people are enemies or, at least, lacking. Political lines are drawn, allies defined, included, and celebrated and enemies defined, excluded, and vilified.
Most people and most issues are far more complex than that. People come from different backgrounds and have different experiences and understandings. People learn. People change, and they change their minds. People have nuance and even what others might view as inconsistencies. And people make mistakes, personal and political, and sometimes recognize them and sometimes don’t. We all do. But we learn and grow best when fully informed, and to be fully informed we need to talk with one another and hear one another—and do so with consideration and respect, with perspective-taking that prioritizes outcome over outrage.
People in change movements are frequently intellectually arrogant and even elitist. They think everyone has moved forward with them—or if they haven’t it’s due to their failings—and they take as an agreed-upon societal good something that was revolutionary a short time before. Frequently, they’re only listening to themselves, in echo chambers of agreement with disdain for outsiders.
For autistic adults engaged in autism and neurodiversity activism, people and organizations who support autism awareness campaigns receive such disdain. Enough of that messaging, we’re told: we’ve had too many years of it—often with messages declaring autism as bad or evil and needing to be defeated. We have enough awareness now. What we need is acceptance—in a society that generally is poor at it. Let’s have a movement for that. “Light it up” red, not blue, they say.
But of course this is a false choice. The truth is part of the reason autism isn’t as accepted as it should be is because of a continued lack of awareness, which can only be improved with education about what autism is and isn’t and about neurodiversity as a valuable contributor to society, not something to be feared.
It’s hard to get people to accept what they don’t understand. Awareness and acceptance are complementary, and these approaches need to be integrated, with differences addressed and resolved, for either to be truly successful.
Light it up purple.
perspective-taking and purpose
Why are we doing what we do?
Is it to effect meaningful change or simply to be pleased with ourselves? While pleasing ourselves can be valuable, I’m suggesting we all become more thoughtful about the difference and make choices accordingly.
Should autistic adults and other neurodiversity advocates be silent on the political, then? Of course not. We all benefit if they are fully engaged. But those voices might be more effective and better heard if platforms for expression are distinguished and selected with intention. We all benefit, too, when purpose, audience, and rhetoric are well considered.
That means we don’t always indulge ourselves in all spaces, but in appropriate ones.
I hope this idea isn’t heard as disempowering. I mean it as empowering.
I think better consideration of space and audience will lead to more purposeful and powerful work being done and then delivered more effectively, in spaces where it has greater consequence. Language and rhetorical approaches being chosen more consciously will matter deeply, as well.
Better choices mean the vital work of neurodiversity education can reach a wider audience and that the dialogue about, and understanding of, neurodiversity will grow.
Such dialogue may not always be easy or comfortable. But that’s really the only way a fuller understanding can develop for everyone.
This dialogue will make the voices of neurodiversity activists and autistic adults more important to and present in the broader societal conversation.
And for that effort, which may include some sacrifice, the lives of more autistic children—and we hope many—will be better. So, by the time they become adults, maybe neurodiversity and autism acceptance really will be concepts that can largely be taken for granted in our society and world.
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Excellent post, thank you. I look forward to following your blog. I am an adult woman diagnosed on the spectrum a few years ago at age 28. I recently started blogging as well and hope to serve as a voice to not just raise awareness but offer insight into how many autistic women experience life and how loved ones can support them. What’s funny is that since really starting to dig in and educate myself on the research and especially reading personal stories and memoirs a few years ago, I’ve never seen the neurodiversity issue as political and have not noticed that side of it. So this was enlightening to read.
On the issue of awareness vs. acceptance, I think this may be an area where self-advocates like me and the parent/professional community are talking past each other. We tend to use “awareness” as shorthand for “outdated ideas that mainly stoke fear about autism and/or encourage parents to pressure their children to superficially conform to the neurotypical world without regard to the effect it has on their emotional well-being.” But of course we need more awareness– it’s just that our definition of “acceptance” would encompass accurate and positive awareness campaigns.
The bottom line, however, is that “awareness” which does not include acceptance front and center is incomplete at best and actively harmful at worst.
On the issue of the March for Teachers– I guess without knowing exactly what the organizers said in their reply and what other issues were being brought up at the march, it’s hard to know whether I agree with you or not. Some issues like racial equity, LGBT acceptance, and even hunger and health care issues are just so intertwined with a truly safe, appropriate public education that I don’t think it’s fair to expect the organizers to water down the message on those issues. On the other hand, if they’re just gratuitously doing things like bashing the coal or oil industry or pro-life activists or evangelicals as a whole, or things like that, then I would agree you have a point.
At the same time though, I can’t help but think if there really had been a groundswell of Republicans wanting to participate in the march but for its divisive, partisan nature, the organizers probably would have been more willing to work with them. And while clearly in a perfect world they wouldn’t have to do this, there wasn’t and isn’t anything stopping “Republicans for Public Education” from having their own march, if there are actually enough of them to matter. I don’t think that 5 or 6 or even 100 “Republicans for Public Education” marching in the main rally would have changed anything, though. They would have just been dismissed as RINOs and out of touch with the conservative moment.
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I’m fairly new to autism and disability activism. (I was diagnosed last October.) But I think it’s usually expected that an oppressed group may be angry, and allies are expected to pick up the work of peacemaking when we can’t.