Autistics Speaking Day 2024: Defining Pop Neurodiversity

Discussing the current trend of neurodiversity-related information on social media and the ways it distorts the overall message of the movement

[image description: a bunch of rainbow infinity symbols against a black background]

Image courtesy of Skylemar Stationary & Design Co.

Around the year 1999, the word neurodivergent began circulating in the few online autistic spaces there were in the anglosphere. It was mainly used by Kassiane Asasumasu, and she intended for it to be a spin on the pre-existing terms of neurodiverse and neurodiversity. It is supposed to denote people with any kind of brain difference-be it Epilepsy, giftedness, Cerebral Palsy, Dementia, or Traumatic Brain Injury among countless other examples. Kassiane herself is multiply neurodivergent, not just autistic. Over time, it became accepted by many that neurodivergent largely applied to autism and ADHD. This is now especially true in many social media circles dedicated to autism and ADHD. The process in which terms like neurodivergent have been condensed and flattened to solely include autism and ADHD, namely to meet the demands of modern social media consumption, are emblematic of what I like to call Pop Neurodiversity.

The last official Autistics Speaking Day was last year. It was held for thirteen years starting in 2010 and was originally a protest to the AEIOU Foundation’s communication shutdown. While ASDay is no longer being observed in an official capacity by the originators of it, I did receive permission from Corina and Kat to still observe it in my own capacity. To that end, I am observing Autistics Speaking Day this year by discussing Pop Neurodiversity.

My basic definition for it is that it’s a term for neurodiversity concepts being condensed and simplified for social media consumption, much like pop psychology, which is where I got the idea to use this term. Just so I don’t end up being like Judy Singer, I should be clear that I don’t claim total ownership of this term and I actually saw a friend use it before I did, though it was something I was certainly thinking about beforehand. It’s a similar concept to Neurodiversity Lite, which is neurodiversity advocacy with all the right aesthetics and words but none of the actions to back it up.

Neurodiversity History is Internet History

The neurodiversity movement has largely thrived online since its beginning in the early 1990s. It has evolved alongside the internet. So naturally, as the internet has changed, so has the neurodiversity movement. With the movement continuing to grow comes growing pains. The autistic community-ergo, the autistic self-advocacy community specifically-used to be very small. It was comprised of a couple hundred people across a handful of email lists and webrings who often met in-person at conferences, namely Autreat. With the movement’s growth, in no small part due to the efforts of the folks in the early days as well as national organizations like Autistic Self-Advocacy Network, it’s hard to say that there’s a single autistic self-advocacy community anymore. This is why you will see me refer to what many may call “the autistic community” as “autistic spaces”. There really isn’t *one* autistic community.

Not everyone knows each other like they used to. The advent of social media has made it easier than ever before to find and engage with other people, and it’s also made a lot of information more far-reaching than ever before. In some ways, this has very much helped the cause of neurodiversity. More people know what it is than ever. In other ways, the design of social media has cut down on what was effective in the email and blogging days-particularly the production of longer-form writing like this. This particularly paired well with the advocacy of trailblazers like Mel Baggs, Bev Harp, and Kassiane Asasumasu. Everything now has to curtail to a social media algorithm that isn’t known for being particularly generous in order to get engagement. These apps weren’t made for coalition building, and while social media can be used as an effective tool for that, I would argue more is lost from it than gained.

The 2010s were a particularly critical turning point for the neurodiversity movement. ASAN gained nonprofit status and opened an office in Washington D.C.. More similar national organizations also started to crop up in the United States, namely Autistic Women and Nonbinary Network and The Thinking Person’s Guide to Autism. There was also the publication of books like the New York Times Bestseller NeuroTribes, books from ASAN’s Autistic Press like Loud Hands, as well as DragonBee Press. In-person demonstrations also started to grow, namely against Autism Speaks and protests outside the Judge Rotenberg Center and FDA Headquarters to ban the shock devices used at JRC. The early 2010s saw the end of Autism Network International, which was the first main organizing body of the neurodiversity movement. Alongside this also came a shift in how the community was communicating with each other online. Many moved from the email lists and forums to social media sites that were growing in influence. Among these was Tumblr. Blogging was still very prevalent, though the relevance of internet blogging slowly dwindled as the 2010s drew on.

Tumblr was particularly notorious for the irritability many of its stereotypical users had. This was conceptualized by some as the “triggered SJW (Social Justice Warrior) snowflake”. This was usually made in bad faith and targeted many LGBT+ folks on the internet in particular. The effects of this are still felt in many internet fandoms and in pop culture in particular. Many people on Tumblr are openly autistic and have related disabilities and many who were active on Tumblr had a significant presence in the greater autistic self-advocacy community. It’s Tumblr where the rainbow infinity symbol started to become the popular symbol for neurodiversity, despite existing well before the site was popular. It’s also where there started to be more “packaged” statements on a number of topics, so while the SJW archetype was exactly that, there were indeed bad actors doing things in the name of social justice and folks missing the nuance behind many topics, as there always have been. While long form posts are certainly doable on Tumblr, many opt to keep their content more brief on there. In a way, as far as internet history goes, Tumblr acted as a transitional phase between the longer form content of the blogosphere and listserv days and the shorter form content of Twitter and Tik Tok. None of this is to say that the pre-social media days were free of human indecency or bad faith arguments, they most certainly were not. What has changed is what is more readily visible.

After some divisive changes were made to Tumblr in 2018, many abandoned the site in favor of other social media. Chief among these was Twitter. Twitter is now known as X, but for the purpose of this essay, I will refer to it as its old, more recognizable name. Posts on Twitter, aka “tweets”, have a strict character limit. People have navigated around this with making Twitter “threads” as well as utilizing TweetLonger. In the late 2010s came Tik Tok, a social media app where you can only post with short videos. Tik Tok started as an app where people danced to songs and sometimes had their videos labeled to symbolize interactions or make a point about something. It soon became an app people used to hold conversations with their viewers, utilizing its bite-sized video format to do so. Autistic people found their way onto the app and eventually, an autistic community was formed on Tik Tok that used a lot of the same ideas used in previous autistic spaces. Their visibility grew as more people started using the app and these users began getting more press that led to more engagements that led to more followers and more visibility in the social media algorithm. The algorithm that social media uses has played a massive role in the proliferation of what I consider to be pop neurodiversity, along with similar concepts like pop science and pop psychology. Tik Tok’s popularity encouraged other social media platforms like Instagram, Facebook, and YouTube to redesign their apps to further resemble Tik Tok, much like they did in response to Snapchat in the early 2010s. Because of this, much of the content people will consume and have consumed related to neurodiversity has become watered down. The older days very much had folks who would “miss the forest for the trees”-ergo, focus on smaller, more irrelevant details rather than the bigger picture. However, the form the internet has now taken has only made this more prevalent than ever. This is exactly where neurodiversity loses its teeth and becomes pop neurodiversity.

Examples of Pop Neurodiversity

So as to not harass any specific people, I will not be naming names but rather trends and ideas. There are several common talking points that I think are prime examples of pop neurodiversity.

Emphasizing the name origins of Asperger’s Syndrome as the issue with the label

Asperger’s Syndrome was named after Hans Asperger, an Austrian scientist who conducted experiments in the 1940s. He was among the first people to publish about autism as a named condition. His work was written in German. Thirty-odd years later, Uta Frith translated his work into English. Lorna Wing, a UK-based researcher, was the first known person in the English speaking world to conceptualize autism as a spectrum. She conceptualized there being a higher functioning variant of autism that was separate from Leo Kanner’s autism diagnosis that she named Asperger’s Syndrome. Asperger’s Syndrome was later added to the DSM-4 in 1993. Twenty years later, it was folded into a single autism diagnosis along with PDD-NOS in the DSM-V, because research showed there wasn’t a sufficient difference between autism and Asperger’s, and that having them be different diagnoses led to uneven distribution of services. You can read more about what changes neurodiversity advocates proposed to the DSM-V to the American Psychiatric Association here. This change was actually quite contested among autistic spaces, even garnering a petition with more then eight-thousand signatures for the APA to reconsider the removal of Asperger’s.

What eventually turned many people against the Asperger’s label was not the same reason the APA nor the neurodiversity proponents in their workgroup decided to. It was later discovered that Hans Asperger was complicit within the agenda of the Nazi Party, sending autistic children that were deemed feeble-minded to be euthanized at Am Spiegelgrund while saving the ones he thought were autistic but still worth saving. Thanks to pop neurodiversity, this has become *the* primary reason many don’t like the use of Asperger’s or similar terms like Aspie/Aspies. There’s often the line repeated that goes something like “if you call yourself an Aspie, then you are choosing to side with a nazi eugenicist”. This claim can be very alienating to people who don’t know any better, and it isn’t the tool of persuasion many think it is. While it’s true that Aspie Supremacy is a very prevalent thing within autistic spaces and has been for a very long time, and the way Asperger treated his patients is quite emblematic of it, the Nazism isn’t the point. You can’t just buy your way out of Aspie Supremacy by denouncing the specific language behind it. It takes much more than just that. It takes actually seeing autistic people, and really all kinds of disabled people, as entire complete human beings with complex human thoughts and emotions AND treating them as such. Note the and. Judging by the way many people continue to act, it’s clear to me that they are not, in fact, excused from Aspie Supremacy. I think people like using the Nazi talking point because it’s punchy. They think calling someone a Nazi is an OHKO punch that guarantees them winning an argument. Going for the OHKO punch is a lot easier than constructing an actual thought-out argument.

Saying “neurodivergent” but really just meaning “autism and ADHD”

This is a big one. Something I really need to emphasize in particular is that the way people on social media even describe autism is typically a very specific kind of autism that they’ll only even be familiar with based on the other autistic people they interact with on social media. While anti-neurodiversity proponents like to point at these people and use them as an example of “not real autism”, and they especially like to go after people who are self or late-diagnosed, doubly so if they are active on Tik Tok, there are genuine issues with what the perception of autism and the autistic experience looks like within pop neurodiversity. I would wager the same goes for ADHD. There’s been a lot of particular use of “AuDHD” to describe having both autism and ADHD, and on the surface it’s a fairly harmless, if cheesy, description. Some have turned it into the new Aspie, even going so far as to propose AuDHD as its own autism subtype in the same vein. I would also argue that the trendy term “neurospicy” has a similar effect.

Kassiane herself has had to coach people not to be exclusionary with the term. One can argue that neurodivergent becoming this pigeon holed is a result of the makeup of the neurodiversity movement being autistic people-and that’s for a variety of reasons-but it still is no excuse.

Reducing neurodivergence to two conditions does so many people a disservice. The fact that it’s probably alien to many people in these social media spaces to even hear the term “intellectual and developmental disabilities” is not surprising, but is disheartening. There are in fact, autistic people who feel their autism is more peripheral to their other disabilities. It’s more likely you may hear high/low support needs (which is commonly just used as a synonym for functioning labels on social media) than you would I/DD and it erases a vital part of the disability community. More frustratingly are terms like “high and low masking”. Even reducing nonspeakers to their own subclass can sometimes be equally reductive. Many people who do this stuff will acknowledge that autism doesn’t have a specific look and that autistic people have a whole range of strengths and weaknesses, but won’t really do much to demonstrate that.

What this results in is a version of neurodiversity than only shows those of us who are conventionally attractive, and moreover, those of us who know how to game an algorithm that does not have our best interests in mind. Many (possibly most) people don’t know how to do this. I certainly don’t and don’t care to. The algorithm makes it more difficult to find autistic people with I/DD, Black and Brown autistic people, autistic people who may be more camera shy, and so much more. The emphasis social media like Tik Tok puts on faces is also a point of inaccessibility for many autistic people, something that wasn’t really a concern of the older internet. The algorithm prefers people and content that are the most digestible for the masses. It doesn’t prefer the content that actually matters.

You also see a lot of people on social media who market themselves as “coaches” who charge you money to get advice from them-regardless of whether they’re truly qualified to give you said advice or not. This is a greater issue within modern social media, but I’ve gotta say, the free content these “coaches” put out is not particularly accurate; I fear to think what their paid content has.

Neurotypical Bashing

This is absolutely nothing new in autistic spaces and frankly, similar antics are to be expected in any space led by a marginalized group in society. Not that this excuses the behavior, but I get why it happens. NT bashing goes as far back as the Usenet days. Mel conceptualized this as Autistic Supremacy, and later coupled that with the more troubling Aspie Supremacy. It’s made its way into pop neurodiversity and is quite commonplace. There are countless posts I’ve seen and that my friends have seen and discussed that portray neurotypicals as unequivocally inferior to people who are neurodivergent (as I established, usually people with autism or ADHD in particular). In these posts, people rant about how neurotypicals are so rigid and uncompromising, or how the way they socialize with people makes no sense. Don’t get me wrong, I think there’s some truth to it. It can be fun to poke fun at neurotypical social standards. The Institute for Study of the Neurologically Typical is a great way of doing this without portraying neurotypicals as inferior. However, the problem doesn’t boil down to “the way neurotypicals do things is bad and the way neurodivergent folks do things is good”. What I think these folks get wrong is that the problem isn’t that what they do is inherently bad-just like the way we naturally do things isn’t bad either-it’s that it can be hard to navigate a world where these differences exist, without an understanding that they do in fact exist, and are both in fact valid. That’s the very definition of neurodiversity, or at least should be. It’s been taken to the extreme that there are videos out there bashing the way neurotypicals dress and decorate their homes, and framing the way their narrow portrayal of neurodivergent people do so as superior. This alone wouldn’t be as big of an issue if it wasn’t also coupled with all these other reductive assumptions about what a neurodivergent person is supposed to be-and what they even think neurodivergence is.

There are many more examples I could list of pop neurodiversity-but really, I think this covers plenty of it. Anything that makes neurodiversity appear more saccharine that cuts out most of the nuance surrounding it qualifies.

How Does This Affect Neurodiversity’s Image?

The answer to this question depends on who you ask. If you ask people who have been involved with the neurodiversity movement for many years, or are cognizant of the movement’s history, they would likely agree there’s a difference between pop neurodiversity and more authentic neurodiversity advocacy. If you were to ask someone who doesn’t know much about neurodiversity and maybe has only heard about it from content creators and influencers, this is all they would know about it. To me, that’s a problem. It also affects how critics of neurodiversity see the movement, and not even just the bad faith critics.

Another way it affects neurodiversity’s image is something I find to be a lot more damning. Watering down neurodiversity to bite-sized messages can make it easier to co-opt. One could feasibly argue that neurodiversity becoming more co-opted means it’s becoming more widespread and culturally relevant. However, this argument doesn’t hold up well to scrutiny when considering that autism itself becoming more widely known led to a lot more harm than good, especially since it was accomplished through fear mongering, hype, and promises of “cures” that really just led to more stigmatization and mistreatment of autistic people. It becomes easier for those same people whose rhetoric was coated in scary statistics and a sense of urgency to “solve” autism to now use pro-neurodiversity language to accomplish the same things, this time with a nicer face. Is this solely the fault of a handful of well-meaning neurodiversity advocates? I wouldn’t say so, no. This was probably going to happen regardless of how social media evolved. It just becomes easier to superficially change hearts and minds when all you convince them to do is adopt different language and symbols. That’s a lot easier to do than it is to get someone to fundamentally reconsider the way they view and treat people.

So far I’ve made it pretty clear what I believe pop neurodiversity to be and why I think it’s a problem. It’s one thing to highlight problems, but what solutions are there?

Solutions

I can’t claim to know ALL the solutions to something of this complexity. The truth of the matter is that neurodiversity being sanded down to this extent in a lot of online and offline circles is much bigger than any one person. Much of it is a byproduct of what internet historians have labeled Web 2.0. I don’t think the internet is ever going back to that completely-especially not with the investment large corporations have made into how everyone uses the internet-though I do think it is possible to carve out a working strategy using the tools we currently have.

It would be difficult to ask people to revert to solely using email or NeoCities, unless you’re trying to do a historical reenactment of Web 1.0. As fun as that sounds to me, it’s better to look to the future than the past. Sites like Discord do a decent job of giving you that more decentralized, private community feel than most other social media, given that you can create your own server and maintain your own group. This doesn’t solve every social issue by any means, but it does make it so the focus is less on the algorithm choosing who to bolster and who to ignore. I have been using Facebook to hold discussions with relatively small groups, purely through text, about several disability-related issues, and they’ve proven to be very meaningful and productive discussions. In a way, they emulate the Usenet conversations of yore, and I kind of try to make it that way. You can also make groups on Facebook, though generally speaking, smaller and more controlled groups are better for meaningful conversations than larger ones are.

The solutions to this problem go beyond how to better curate one’s social media experience. There also needs to be more forms of outreach. Resource sharing has been a thing since the web was a thing. Sites like Autistics.Org and Neurodiversity.Net made it a lot easier to find information related to neurodiversity-whether it was historical resources, books to read, or essays about specific topics. My site, Autistic Archive, is meant to make a lot of older information (and even some newer) more readily accessible with fewer necessary clicks. Programs like ASAN’s Autism Campus Inclusion are an excellent way of reaching out to younger folks starting to do work related to disability rights or who would like to start. I can personally attest as someone who did the program a few years ago that it is very effective at what it does and a great way to learn a lot of stuff about the greater Disability Rights Movement, which of course includes neurodiversity. Not everyone is in college, grad school, or a related program, though. Thankfully, ASAN has begun sharing their educational materials from ACI with a broader range of people. I think one effective way of reaching out to autistic people or anyone interested in getting more involved with neurodiversity advocacy is to go places where you are likely to meet people with developmental disabilities like your state’s DD Council or local People First Chapter, as well as places that you may not expect to on the surface. One such place would be a fan convention. Tons of disabled people from a variety of demographics turn out to fan conventions, especially post-2020. Doing panels related to disability, or attending ones already planned, can be a good way of absorbing and perhaps relaying information.

How you do outreach matters, but it also matters what you provide. Personal biases aside, I think Autistic Archive is a good introductory resource, especially the video lessons, glossary, and the timeline. There’s also ASAN’s Welcome to the Autistic Community. Autistic People of Color Fund has resources tailored to the intersection of disability and race. Lead people to these resources, and later follow up with them about what they’ve found and talk through it with them.

There are a lot of things to discuss when it comes to the current state of the neurodiversity movement-both good and bad. Many things about pop neurodiversity can be said about the movement historically. It’s great to see more people learn what neurodiversity is, and to adopt pro-neurodiversity principles. The more people there are on our side, the more likely it is we can work to push the movement’s priorities. However, this won’t be accomplished through the condensed and watered down social media content that is currently rampant. We may not be able to turn back the clock and restore the neurodiversity movement to how it was before social media-and for many reasons, we shouldn’t-though we can certainly learn from the past, including what was done well and what was not so effective, to create a better future for the neurodiversity movement.

TL;DR

The Neurodiversity Movement has evolved alongside the internet. Because of this, the movement’s optics have changed to fit the mold of the changing internet landscape. This has come with some advantages but has come with many more disadvantages. Said disadvantages have changed the neurodiversity movement for the worse in many ways. To correct this, I think the best course of action would be to go back to what worked in the older days, and there are relevant social media platforms that can be used to this end, as well as the use of effective outreach that can encourage those newer to the movement to learn what neurodiversity ideally should be about.