R. JONES
R. Jones of Aylesbury, England loves creating music, watching British sci-fi hit Doctor Who, and being autistic.
The genderqueer musician, 21, is a vocalist, guitarist, and songwriter all at once, and has been performing around their area for the past few years, often singing and recording original songs.
“I write too, but that's more of a hobby than a career...though you never know. I've always kind of liked the aesthetic of sitting at a desk writing stories on a clunky old-fashioned typewriter with a little windowsill garden...but I can't even remember to water plants, so I don't think that's ever going to happen.”
Fanciful aesthetic or no, writing has been a part of Jones’s life for years—and was actually how they discovered they were autistic in the first place, at age 16.
“I was writing a story with a friend and decided to write a character as autistic, then looked up the symptoms write it more accurately, then realised that so many of those symptoms described me.”
A few minutes pass, and the “ro is typing…” message at the bottom of the Discord chat window we are talking through drifts in and out. “These days, I think of them as ‘traits,’ rather than ‘symptoms,’ but I thought differently back then.”
In those early days, Jones identified with common autistic traits like difficulty with social interaction, lack of eye contact, intense interests, touch aversion, and food sensitivities.
But they dismissed that initial recognition—only to come back later, do more research, talk to other autistics, rule out other possibilities, and discuss it with their parents.
As it turned out, Jones says, “My mum suspected I was autistic when I was very young, but doctors told her I was ‘gifted.’”
Because there wasn’t much information about autism available at the time, she decided it wasn’t worth pursuing.
And so life went on, until years later Jones began to suspect the same thing themself.
After eight months of research and self-reflection, they self-diagnosed as autistic—and then, just before they turned 18, a professional diagnosis from the Child And Adolescent Mental Health Services (CAMHS) confirmed what they already knew.
Minutes pass as Jones takes care choosing the right words to talk about their experiences.
“For difficulties with social interactions, it's hard to give specific examples. It's more of a feeling that I don't quite fit in. I've described it before as being similar to visiting a foreign country and only understanding half the language—you know enough to get by, you can have conversations with people, but you feel like you're missing out on the subtleties, or that there are cultural differences you aren't aware of.”
The difficulty’s multiplied by their auditory processing issues, which cause them to sometimes mishear or completely miss parts of what people say.
Eye contact is nuanced, too, they say. Over the years, they’ve taught themself to look just below people’s eyes, “because people tend to find it rude if you don’t, which seems silly,” but they can’t do so when they’re speaking, unless it’s with someone they’re very close to.
And then the conversation wraps back around to music, which they list as one of their major special interests—a term the autistic community uses to describe their intense interests—alongside other things like Doctor Who and anime.
There’s a misconception, Jones says, that all autistics are walking encyclopedias for their special interests, like the stereotypical little boy memorizing dates while he plays with a train set. And while that’s true for some—“I could tell you a hell of a lot about Doctor Who, for example”—the more important thing, for Johnston, is the passion involved.
Their own shines through as they talk about their current interest—Pokémon. “I've been playing the games constantly, I've watched over 200 episodes of the anime in about four weeks, and I'm working on a cosplay for an upcoming convention.”
That kind of limitless enthusiasm, says Jones , “is one of the most important things about us.” And it runs counter to another stereotype—that autistics are emotionless.
There are a lot of stereotypes like that, largely due to “awareness campaigns” which, as Jones explains, “spread fear and misinformation, and act as though autism is a terrible disease that needs a cure.”
Such campaigns are particularly loud and common during April (commonly designated Autism Awareness Month), ostensibly to benefit autistics.
But in reality, “April is a month of puzzle pieces and blue lights and constant hatred and vitriol from the likes of Autism Speaks, and it does absolutely nothing for our cause, because it's not done for us; it's done for the neurotypicals who don't want the ‘burden’ of ‘dealing’ with us.”
When asked how they feel about the campaigns, Jones responds simply: “I do not like them.”
A moment later, though, they confess that they’d like to be more explicit, “but your boss probably wouldn’t like that.”
When I give them the go-ahead to speak freely, my screen is full of expletives within seconds: “I want to set a cactus on fire and shove it up the *ss of every single c*nt that organizes these hate-filled fear-mongering bullsh*t campaigns so they finally know what it feels like to get f*cked over by a flaming pr*ck.”
Instead of supporting those, Jones says, “I wish people would support us. I wish people would listen to us. We don't want a cure, we don't want your abusive ‘therapies’ and early intervention, we don't want to be made normal. We want the right to exist exactly as we are, and we want your acceptance of that.”
In addition, Jones advocates for increased accessibility for all disabled people, for accurate information about autism to be more readily available, and for people to support actual autistic people’s causes.
“There’s a motto in the autistic community,” they explain: “‘Nothing about us without us.’”
It’s the foundation of all autistic self-advocacy efforts, and the root of all problems in neurotypical people’s efforts—media representation as well as “awareness.”
Other than sitcom Community’s Abed Nadir, written by autistic Dan Harmon, no mainstream autistic characters have been written by autistics—and so nearly all fall into the same stereotype: a young, white, straight, upper middle-class boy genius who blurts inappropriate things for audience laughs.
“The worst offender I can think of right now is Sam from Atypical,” Jones says, referring to the Netflix original series.
Additionally, Jones notes the lack of intersectionality is inaccurate. “Autistics are all different.”
And so are the community spaces—which most TV shows, with their solitary autistics, never portray—that autistics create. “There's lots of subsections of the community—I as a queer person tend to stay in spaces that are intersectional, as I find them the safest—so no two spaces are alike.”
So much so, Jones says, that it’s hard to define the autistic community beyond “people who are autistic”; although allies are important, “they’re not members of our community.”
They personally define the community as “a group of people who are proud of our differences and work to be our best selves and make the world a better place for people like us” and “a space where we can be ourselves, discuss things that are important to us as a group, support each other, and celebrate our lives as autistic people.”
Jones types for several minutes, contemplating what they celebrate most about themself as an autistic person.
“I'm not sure, to be honest. Music is definitely a big part of it; I don't think I'd be as good a musician if I weren't autistic. My ability to see things differently to other people. My lack of care for social norms. Stimming! Connecting and befriending other autistics. Being passionate about social issues. Finding new and different ways to communicate. Getting absorbed into a new interest.”
Jones pauses.
“I think my favorite thing about being autistic,” they conclude, “is being autistic.”