Neurologic
Neurologic is a podcast produced by autistic Leo Jones about autism, autistic advocacy & self-advocacy, issues of importance to autistics and the autistic community, and much more.
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Episode 30 - Trust, Goodbye and Farewell
03/24/2024
Episode 30 - Trust, Goodbye and Farewell
After five years of production, I will be shutting down this podcast. I have no regrets - it's been a journey of creativity, advocacy, and discovery, exploring various topics and individuals all along the way. I kept my word that the content would be freely available, and tried to ensure it was accessible within my limited means. Most importantly, I answered and realized my utmost question - is this, for me, even possible? And, for 5 years, it was. However, all things must come to an end. Everything, eventually, must cease. Neurologic is no exception. While I am contemplating and considering future prospects for audio-visual advocacy, at this moment I am taking a sabbatical of indeterminate time. Hopefully, I can start something new - and with some luck and perserverance, invite other autistics and/or neurodivergent folks to join me. As the profound baseball player Yogi Berra once said, it ain't over ‘til it’s over. I also want to thank you for listening; words cannot convey how important, how crucial it is to know that someone, somewhere is listening. It expresses value and importance, that you're not just shouting into the void, that someone does understand - or, at the very least, wants to understand. I'm glad you're here, and I hope I was able to articulate our struggles - not with being autistic per se, but with the systems and societies that we are required to navigate; challenging obstacles that rarely come with any kind of guidance or instruction. I hope the insight I provided was useful, boosted your confidence and resolve, and, perhaps, was also amusing and fun at certain moments. I hope that all of your dreams are beautiful, and that you find your Neurotribe, no matter who you are or where you are - and that you are able to trust in those around you to genuinely and authentically accept, include and welcome you....not in spite of being neurodivergent, but as a unique and joyful part of your whole identity. But before I finish packing up this podcast, I wanted to discuss...Trust.
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Episode 29 - Neuroqueer Heresies: An Interview with Dr. Nick Walker
12/20/2021
Episode 29 - Neuroqueer Heresies: An Interview with Dr. Nick Walker
Over the past few years, the notoriety of the term Neurodiversity, as well as its siblings - Neurodiverse, Neurotypical, Neurodivergent, among others - expanded and transformed what it means to have a mind that differs from the subjective sociocultural norm. Yet despite a rise in adoption, many both inside and outside autistic spaces are unable to accurately define Neurodiversity, leading to confusion and misunderstanding. In her latest book, Neuroqueer Heresies: Notes On The Neurodiversity Paradigm, Autistic Empowerment, And Postnormal Possibilities, Dr. Nick Walker explains the Neurodiversity Paradigm, Neurocosmopolitanism, Neuroqueer Theory, and so much more. She joins Leo Jones on this episode to discuss why she wrote this book, how it came to be, how she came up with the name, and what possibilities await in a future that recognizes and accepts the Neurodiversity Paradigm. For more information about Dr. Walker, visit their website: You can find their book through the Autonomous Press website: Or at IndieBound: Also, check out their work on the fantastic urban fantasy webcomic Weird Luck:
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Episode 28 - Scrubbing The Record
09/18/2021
Episode 28 - Scrubbing The Record
What's “next” for autism seems to be a rising trend in the autism community: removing potentially problematic content, connections to extreme organizations, and giving painfully vague explanations while passively denying such actions - and even the very existence of what is being erased in the first place. In this episode, Leo Jones highlights clandestine efforts by prominent autism charities, events and even researchers to wipe away a divisive past, putting us in danger of repeat it.
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Episode 27 - Time To Face The Music
04/12/2021
Episode 27 - Time To Face The Music
After covering the controversy over the movie ‘Music’, watching the movie itself and posting a real-time review it, Leo Jones finalizes the last word on Sia and her movie ‘Music’. Discussing Sia's apology - and how she failed to live up to her post-apology promises - this episode tries to explain why neurotypical people in the autism community (like her) have a difficult and painful time accepting the unpleasant consequences of their actions, especially when their intentions are supposedly good.
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Dissecting Sia's movie Music, one timestamp at a time
02/26/2021
Dissecting Sia's movie Music, one timestamp at a time
This past week, I obtained a copy of Sia's movie Music, taking her up on her tweeted request to watch the film before judging it. Released clips aside, I went into it with expectations based on its description and promotion. Below are real-time notes with time-stamps as proof of screening. This dissection cannot and does not cover everything, with selections focused on specific and problematic depictions of autism, autism treatments, parents and caregivers, ableist tropes and other issues I felt could not be ignored. I watched this with a friend whose insights are included with my own. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 00:00:51 - Music starts its first shot of Music (played by Maddie Ziegler) in her underwear, getting dressed. It's an...odd way to start the film considering the descriptions and trailers that have been released. Not a sexualized shot, but...uncomfortable. Why is this the opening shot? What purpose does it serve? Music puts on her pants and then starts hitting her thigh with a closed fist; why? Does she not like the clothing? No answer. 00:01:20 - First music video (song performance) and the imitation of autistic stims and behaviors begins, with twitching, blinking, and hand motions/stilted fingers; wide eyes and open mouth with upper teeth jutted out. Overwhelming colors and strobe light effects (not as intense as your local haunted house, but very much there). Not sure what this performance at this time is supposed to represent, but the song at least gives context clues; something about how her mind isn't in control of her body. 00:03:26 - aaand suddenly Music is back in reality, but also back in bed!...wait, wasn't she just getting dressed and standing up? Maybe we're doing the whole ‘Chicago’ route with musical numbers representing what the character is thinking? Humming and the same upper teeth jutted out. Not Ziegler's fault, but you can tell it's not natural. 00:05:30 - After a non-contextual scene with Music and what appears to be her....mom...?, Music has breakfast, has her hair braided and then leaves on her own accord. Not great, but so far not terrible. 00:05:34 - Toe walking! Starting to think that I should've brought my Autism Bingo card from Giraffe Party, because I have a feeling there's going to be an awful lot of autism tropes in this film, with a focus on infantilization. Man running newspaper stand gives Music pictures of dogs (assorted). Normally this would be kind of sweet, but likely this is a not-so-subtle hint at one of Music's ‘special interests’. Who's this guy in the green and white striped polo paying for the watermelon slice that the vendor hands to Music? I applaud the coordination here but this doesn't feel right. ...wait, is the entire neighborhood in on watching her? So she wasn't just leaving of her own accord on her own? NEED CONTEXT. 00:06:00 - Music visits the library, and if the newspaper stand guy's torn-out dog pictures weren't enough of a clue, Music explores a book about dogs on a shelf. So far, all we know about Music is: - Girl - Interested in Dogs (What kind? Favorite? No clue) - Lives with parent? - Has headphones and wears them, but no idea if she's listening to anything 00:07:07 - Entire veneer of ‘autistic girl’ is dropped as Music seems to stare off into the sun. No jutting teeth, mouth closed, eyes no longer wide, a very calm and almost meditative expression. Why is th-OPE NEXT SCENE! Back to the ...mom...?, where we find out that her conversation topics come from popsicle sticks. Okay, but is this implying that Music cannot read? We just came from the library, but was she just looking at pictures? Maybe the next scene or two will enlighten us. 00:07:47 - Music is no longer staring at the sun, but the ...mom...? is having trouble! Something is wrong! Back and forth between Music and her mom, with Music performing all the autism tropes as she walks down the street. The same neighbors are there but at least they're not giving her baby-talk; talking AT her, yes - but no baby-talk. MOM IS HAVING A STROKE....I THINK! 00:09:06 - The ‘mother’ has fallen down and looks at the very least unconscious. Music doesn't seem to notice this at first, taking her seat at the kitchen table as though nothing was out of the ordinary. Yet another autism trope that seems to indicate autistics don't ‘read the room’, which is at best incorrect. A few seconds later as the building landlord comes in, Music indicates she IS aware something is wrong with her ‘mom’. Music seems to be at the beginnings of a meltdown and starts hitting herself. 00:09:43 - “Don't worry Music, she's just sleeping!” More infantilization. 00:10:10 - ‘Mom’ is dead, being hauled out in a bodybag on a gurney. Music seems upset, which is expected. What's NOT expected is this neighbor saluting her body as it passes by his door. Why is he saluting? Is he former military? Was she? Can we get some context please?!? No one is talking to her, just at her - and now no one is talking to her at all. A police officer and the landlord talk about her in front of her like she's not in the hallway. Okay so now what hap- 00:10:40 - Scene change! It's Zu (Kate Hudson) in smiley-face knee socks snoozing in a folding chair! Might be AA or rehab, but we again don't quite know. Takes a phone call - her grandma died. I assume that's Music's motherly figure that just died, so that's her grandmother as well...? 00:13:39 - Zu's character arc begins as she enters Music's apartment, having a coarse conversation with George the landlord. Clearly the movie is trying to make us hate Zu so that we can watch as she is...transformed...by Music. 00:14:19 - “I'm goin' home. Rough day.” Probably the most enjoyable line in the movie so far. 00:14:52 - Hard to criticize because I assume this is supposed to demonstrate how NOT to treat an autistic, but still cringey watching Zu take off Music's headphones without permission and try and force eye contact. OOOHHHH ZU IS MUSIC'S OLDER SISTER! 00:15:15 - Zu calls L.A. Dept of Mental Health and asks “Do you do pickup?”, starting an exchange which is slightly funny, especially due to the unfortunate fact that it's highly likely social services in multiple states has had this same conversation. The realism splits away when the person on the other end of the line hangs up on Zu, which is very much against Dept of Mental Health rules in any state. 00:15:28 - Her name is Kazu. Her NAME. IS KAZU. MUSIC and KAZU. Is this some sort of nod to Frank Zappa's children? Is Frank the father? (sighs) Well at least we see the will - excuse me, The Big Book Of Music, with glitter and stickers. The letter written to Zu isn't much better, apparently with no information about Music's schedule, accommodations and needs. No case worker, no service coordinator - Music is left in the care of her sister and...that's it? 00:17:10 - That guy with the green and white striped polo is shining a flashlight into Music's window from across the street as she's settling down to sleep. Another music video starts; a sad song but...happy face?? Is he her friend? Who IS this guy? Why is he doing this? Music is faced away from the window, he can't see her reactions, so why does he shine a flashlight into her window? Strobe effect as he turns it on and off. Again, no context for this. What's with the dog? Does the dog represent the special interest or someth- 00:19:10 - Scene change, keep up audience, it's morning! Second underwear shot, but Zu this time. Music comes in to a sleeping Zu, and says quietly, “make you eggs” twice, then YELLS it - more echolalia but not explained to the audience. Was the breakfast routine not mentioned in the Big Book Of Music? Zu cooks some eggs, then Music says “braid your hair”. Zu replies, “I don't have hair” - which doesn't follow the context clue of “make you eggs”, so either Zu isn't listening, or is just being a jerk. 00:20:15 - Music goes from saying “braid your hair” to full-on autism imitation meltdown in literal seconds, a clear attempt by the movie to scare the audience into thinking Music is violent and unstable. Zu was responding, talking to Music, but that doesn't seem to prevent it (which is not in line with actual autistic meltdowns). Now, if the eggs were done incorrectly and other factors weren't taken into account, a meltdown would make sense - but we don't get that context. Instead we get Music hitting herself, throwing off her headphones (which goes against assumptions made about Music and...well, music being a calming stim for her) and hitting Zu. Third underwear shot, Zu again! Why, pray tell, do we get a butt shot of Zu in her underwear in this scene? What purpose does it serve? We already know she's only wearing it. No need for this shot. 00:20:43 - Saluting neighbor (Leslie Odom Jr.) makes another appearance after knocking on the door of the apartment, and Zu just letting him barge in. Uh, hi, who the hell are you, and why did Zu just let you in? We're not told, but he immediately walks in and grabs Music, picks her up and then pins her to the ground. Odom: “I'm going to compress you and make you feel safe” Zu: “You're hurting her!” Odom: “No I am not, I am crushing her with my love” Zu: “...oh okay” Wasn't this one of two scenes of restraint that were supposed to be REMOVED from this movie, Sia? Wasn't there an outcry about how WRONG and UNETHICAL and HARMFUL it is to portray this kind of restraint as an autism treatment to audiences? “Crushing her with my love” is how autistic kids get hurt or even killed, not comforted or de-escalated. This is NOT - I repeat, NOT - help an autistic child become more calm; on the contrary, restraint ESCALATES the meltdown. 00:21:30 - Ah, Leslie Odom's character is named Ebo. Finally we get a name after traumatizing Music with restraint, and all she wanted was her hair braided, not to be aggressively pinned down. And now we know grandma's name - Millie. Ebo's not a case worker, not a service coordinator - just a neighbor that tackles her and pins her down. At least the film isn't depicting a trained professional doing this. 00:23:13 - Apparently we've gone back in time, as meltdowns are called ‘episodes’ by this film. I wonder what other widely-used terms in the autism and autistic communities have been swapped out for what Sia has written in? Great research, Sia. Even Autism $peaks uses the term meltdown. Also another underwear shot of Zu - number four. 00:23:55 - Zu: “Her whole life's a schedule” Uh, everyone's life is a schedule; this isn't a new concept - most people schedule their lives, either through a to-do list or a calendar. At least Ebo seems to expect Music to have autonomy, despite admitting that, yes, the entire neighborhood coordinates around Music every day. Ebo then reveals he had a younger brother who he also restrained the same way when he was having a meltdo- excuse me, ‘episode’. 00:24:31 - BEST UNINTENTIONAL JOKE OF THE FILM: Ebo: “He liked to be held to feel safe” Zu: “Where is he now” Ebo: “...He is dead now” DID HE SUFFOCATE WHILE BEING PINNED DOWN? Ebo: “Special needs are not well-understood by my country. In fact, in my village, it was considered a curse” I feel like I need to apologize to Ghana for this borderline xenophobic line. I don't know the level of care for disabled persons in Ghana, but I'm sure this is a gross simplification at least. This writing is seriously godawful. 00:25:26 - Bed-wetting reference, yet another autism trope. Zu confesses to wetting the bed four months prior in comparison to Music not wetting the bed in over two years. People do this to autistics all the time, so while it's not surprising to see in the film, it's disappointing. “Oh, you have [issue]? I have that too! We're all a little autistic!" 00:25:56 - SERIOUSLY WHO IS THIS GUY IN THE GREEN AND WHITE STRIPED POLO FOLLOWING MUSIC AROUND?!? 00:27:00 - NOW HE'S CHANGED SHIRTS?!? 00:27:15 - This is the first time I've heard the term ‘people pound’. Is that actually a term people use? At least Odom's reaction is the same one I had in response. 00:27:58 - The green/white striped polo guy finally gets some focus; apparently he works with his family at the dry cleaners. Yes, his parents are Asian, and yes, we've once again flirted with borderline racism. The dad wonders aloud why they adopted him. Found out his name's Felix, but that's only after turning on the subtitles. When would the movie have told me otherwise? It's a mystery. 00:30:06 - We're back at the apartment and it's nighttime. Zu digs through a closet and finds some childhood stuff (toys, clothing, etc), and in the excitement runs back in and bothers Music - who's watching a show. Zu immediately turns it off in a demand for Music's attention, with little regard to Music's time, preferences or even consent. I know it's just a TV show, but try doing this with your friends or someone you love and see how they take it. 00:30:39 - Music apparently has seizures! Zu, recalling her dead dog Raindrop, mentioned it had seizures ("Just like you, Music"). Adding to the list, along with echolalia and other symptoms. So the flashlight and the whole ‘crushing with love’ thing are even MORE dangerous than initially perceived. 00:31:02 - More backstory. Apparently their (Zu and Music's) mom was a drug addict and carelessly left the door open, and the dog Raindrop got hit by a car. Music, sticking to her schedule, leaves to go to bed, but Zu fails to recognize the time and again respect Music. The film makes Music look disinterested, not listening, not caring instead of framing Zu as the problem here. 00:31:30 - Zu's at a wig shop...? OH my mistake, it's a drug dealer's place. A creepy drug dealer that refuses to acknowledge boundaries, but with good intentions and half-assed flamboyance. This is where we also find out what Zu does for money - she deals prescription drugs. Yet another underwear shot. We're at 5. 00:34:07 - LOOK EVERYONE, A SIA FILM IN A SIA MOVIE - SIA-CEPTION! 00:36:02 - Ebo is shown on the phone desperately trying to procure some sort of medication; apparently he has some sort of medical condition, but we don't get to know or find out. Is he...diabetic? Does he have...MS? Surely whatever he has won't be a stereotype of his skin color! Next day Music and Ebo are seen, with Music learning to utilize an AAC tablet. She hits “I am sad”, which prompts Ebo to respond with dismissal and instructing her to hit “I am happy”. This isn't how you teach such usage. 00:36:15 [roughly] - Finally get to a scene that's used in the trailer - the kiddie pool scene. Ebo to Zu, leaning out the window: “What are you doing, sister?” ...seriously, this is some dogshit writing. Zu to Ebo: “I'm CELEBRATING!” What are we celebrating? Why? No idea, and the film wastes none of its time explaining the details. But at least Music finally gets the chance to communicate her wants/desires/feelings. Progress, right...? 00:37:07 - In a rare moment of autonomy and respected decision-making, Music's given a choice, and Ebo not only addresses her directly to ensure consent - he also defends and reinforces her decision against Zu's unceasing persuasions and requests. It took over 30 minutes, but there it is: a tiny, tiny bright spot in this film. 00:40:39 - FELIX IS IN THE BOXING GYM! Another disability trope: pretending to put the disabled person ‘in charge’ or, in Music's case, “sit here and let the fighters know what they're doing wrong”. 00:41:34 - Poster of Ebo's boxing days hangs on the wall. We finally learn what his last name is. Odom. Ebo's last name is Odom. You know, like the actor...Leslie Odom Jr. If this is the only main character in the film that shares the same name with the actor, it's going to be very hard to not see this as vaguely racist. Was it that hard to not give him a different last name? 00:42:01 - The film continues to bait & switch on acceptance/understanding and ableism, where it will get SO FUCKING CLOSE to understanding, but each time takes a hard turn just before getting there. Ebo states Music may want to change, but “can't change”, as in being autistic. An acknowledgment of the fact that Music is and will always be autistic, but doesn't differentiate disability from personal growth. Ebo: “Each change comes with a barrage of new stimuli." YES! Correct! This is true! “The headphones. It's called audio filtering” *facepalm* No it isn't, no one - not autistics, not academics, not even Autism $peak$ calls it that. Seriously, not part of the terms they use. “Her hearing is so sensitive she can hear whispering up to two rooms away." Ooookay, this may be true but is devoid of context that would explain that, as an autistic with such hearing, you pick up EVERYTHING - even stuff others cannot hear. For many of us, we can't just pick and choose what comes through. “She can understand everything you are saying to her.” Again, yes! Thank you! Presumption of competence! “Maybe not right then. How it works is she hears it, she files it away, and then sometimes it is returned to her main system three weeks later.” WHAT THE FUCK ARE YOU TALKING ABOUT?!? No. Incorrect. That's not how that works AT ALL. Where the hell are these definitions and claims coming from? I'm not a fan of Autism $peak$ but even THEY don't spew this level of bullshit. “You know how she looks at you, and then looks away quickly?” Oh no, where is this going? Please be about eye contact, PLEASE be about eye contact... “She has taken a snapshot.” OH COME ON SERIOUSLY “If she didn't look away, it would totally overwhelm her.” Right conclusion, absolutely wrong reasoning. 3 years of research and this is what Sia gives us. 00:44:00 - Hey, remember that restraint scene in the park so many of us were justifiably upset about? Yep, still in the film. You know, despite the fact that Sia said she was removing it. Music is overwhelmed by a group of noisy kids running past, and starts hitting herself, taking off her headphones and tablet. Zu: “Come on Ebo do that thing.” That thing, by the way, is what was done at 00:20:43. Ebo: “I'm not climbing on top of a small screaming white girl in the middle of this park." Oh, so Zu's going to be the one ‘crushing’ Music with her love. Zu pins Music to the ground, face down. Despite the fact that they're in a park, there's room to move, and letting Music move through being overwhelmed would be a safer alternative. Ebo:“Tell her she's safe” No, that's not how this works. Watching this just makes me feel exhaustively sad. The technique used by Zu isn't safe, it wouldn't make ME feel safe, and the way she's wrenching her arms, it's likely causing damage. There's a major difference between feeling safe by being confined (squeeze boxes, weighted blankets, etc) and being pinned down. 00:45:30 - After the restraint Music is given a snow cone and apparently everything is just fine. Now back at the apartment, we get more of the ‘playful’ flirting, with Ebo telling Zu she's closer to her autistic sister in emotional age in contrast to actual age. How old is Music? How old is Zu? If this film mentions either, they've both been forgotten. Zu then calls Raindrop her spirit animal, because of course she does. 00:47:42 - Apartment gets hit by a blackout. Ebo tells Zu about his failed marriage and how his wife is marrying his brother (not the autistic one, he's dead, remember?). There's apparently more, but despite a blackout, Ebo's holding the rest for later. Hey, where's Music? Oh, just chillin' out on the couch with her tablet. It's a wonder she was visually even in this scene, like an accessory of Zu. 00:51:04 - Next morning, Zu is at a pawn shop...
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Episode 26 - My Heart Has Always Been In The Right Place: Good Intention Gaslighting
12/20/2020
Episode 26 - My Heart Has Always Been In The Right Place: Good Intention Gaslighting
Good-intention gaslighting has been used frequently - regardless of intention - against autistic self-advocates and activists for decades. It's a way of deflecting fair and valid criticism of neurotypical-led autism charities, segregative housing, stigmatizing symbolism, and more. But what, exactly, is good-intention gaslighting, and why is it so pervasive among supposed neurotypical autism advocates?
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Episode 25 - Why This Happens
06/01/2020
Episode 25 - Why This Happens
Earlier this month, the social media app TikTok was host to the ‘autism challenge’,which encouraged people to display mocking autism behavior, including stimming and seizure-like movements on video, which was then shared with the hashtag autismchallenge. It's obvious that this was a hateful trend, and while TikTok as a platform has since appeared to have deleted the hashtag and condemned the challenge, there are significant numbers of people that are stymied, shocked and in disbelief that this happened. But haven't we seen this before? Are the people creating these videos and perpetuating the challenge, the ones at fault? The ones to blame? In this episode, Leo Jones discusses the origins of these disparaging and bigoted trends, the continued impact of them, and how to make it stop.
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Episode 24 - Care During COVID
05/07/2020
Episode 24 - Care During COVID
In this episode, Leo gets a bit personal, talking about how he's managing during the COVID-19 pandemic - discussing hobbies, games and coping strategies during this time.
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Episode 23 - The Lucrative Autism Industry
04/01/2020
Episode 23 - The Lucrative Autism Industry
In this episode, Leo finds out about the Autism Industry, a healthcare sector that has seen significant private equity financial investment - and is stunned at what he discovers. CONTENT WARNING: this episode begins with a parody that may include words or phrases that some may find offensive and/or traumatizing. To skip the parody, please jump ahead to the 3 minute 15 second mark to listen to the episode.
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Be Kind (to us), Don't Rewind (the past 15 years)
02/13/2020
Be Kind (to us), Don't Rewind (the past 15 years)
On February 11th, Autism Speaks celebrated its 15-year anniversary, as well as kicking off their ‘Year of Kindness’ campaign, describing a new, more inclusive and diversified organization. Yet many autistics still retain heavy aversion and avarice regarding Autism Speaks, precisely because of their actions over the past 15 years. What's the history behind this conflict? Is Autism Speaks changing, and if so, is it enough to heal the trauma and bridge the divide between the autism and autistic communities? In this episode, Leo Jones covers the basic history of Autism Speaks, their actions, the current pseudo-re-branding, and six actions Autism Speaks can take that would truly make 2020 a “Year of Kindness".
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Questions
01/26/2020
Questions
How do adults find out if they’re autistic? Why is it more common for boys instead of girls? I wonder if I have autism...? In this episode, Leo Jones answers questions from local middle school students about autism, ranging from general information to the very personal. With this episode is a copy of the questions as well as the script. -- Resources mentioned: Welcome to the Autistic Community! - Autistic Self-Advocacy Network This handbook, written in plain language, welcomes newly-diagnosed autistic people and autistic people who have just learned of their diagnosis to the Autistic community. It addresses the most common questions that people may have about their diagnosis, emphasizes that they are not alone, and celebrates their new identity. This booklet is available in two versions for two different age groups: Adolescent and Adult.
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Visions for 2020
12/31/2019
Visions for 2020
In this brief episode, Leo Jones covers the absence of content from the past five months, some personal issues, and hopes for next year.
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A Letter to Jeanafer
11/01/2019
A Letter to Jeanafer
Disclaimer: This piece does not apply to all parents nor all my friends. If you're worried it might, you can e-mail me at [email protected]; I welcome such conversation, and the willingness to examine one's self after reading this letter is a significant sign that such worries are misplaced. I've wanted to write this for at least five years, possibly more. It has harbored a place in my mind, changing shape but inherently being the same message. Even now it took over four months to finalize, and I'm still aching to tweak it. Unfortunately it's hard to articulate that message in a way that is listened to, accepted, understood. I know the reaction will be so insecure, so angry, so emotional, that before it's processed, it gets rejected. But I have to get this out. I have to document this, expunge it from my system, at least once. Jeanafer, I do like you. I think you're a quality human being whose heart is in the right place; you work way harder than what is expected, and often are not paid more than lip service for it. You care deeply for your family, and you put them first. I have learned from working with you, and despite what I write here, I would be willing to do it again. But I need to set some things straight first. You and I keep hitting the same repeated arguments when it comes to autism - more specifically, autistic civil rights, neurotypical parents of autistics, neurotypical-led autism charities, and the issues that surround these topics. While we don't always agree, I keep on thinking that if I explain it well enough, describe it well enough, parse it down enough, that somehow that will be..well, enough to have you understand. On some topics this has changed - but mostly, it ends up devolving to an online screaming match, and I end up walking away feeling worse, feeling like I have failed both you and the autistic community. What sticks with me is not the issues themselves, but what you've said and written. “I wish my kids could be as expressive as you are and do half the things you can do, but at this point in their life they cannot.” “I think some parents wish their kids were like you and it is hard for them because they are not at where you are at.” You've told me why you left Autism $peaks - not because of their terrible, bigoted stereotyping of autistics, not because there was no one autistic on their board of directors, not even for some of the more callous, abysmal and exaggerated propaganda pieces (I Am Autism, Autism Every Day, etc) - but because they centralized all funds raised by local chapters instead of keeping the money local. And while you've gone on to state that you definitely do not agree with them based upon the above, I cannot be sure where you would stand today if the funds raised local had stayed local. But I bring up these two specific quotes not only because of their emotional impact, but because they are commonly repeated to me by other parents - often used in conjunction with words like ‘inspiration/inspiring', ‘well-spoken’, ‘put-together’, or some semblance of not being able to ‘tell’ that I'm autistic. When someone says ‘I wish my kids were like you’, does this make you feel good? Are you complimented, does it come across as flattering? I’m seriously asking because for me...it never, ever feels that way. I know that the intentions may be good by the person stating this; it's why I work to avoid responding in a negative or hostile fashion, eke out a smile, and either ask them ‘why?’ or redirect the conversation elsewhere. It has never felt like anything but a punch in the gut for me. It makes my stomach drop, as though I were standing on the edge of a bottomless pit with no railing or safety. And then comes the realization that the person I'm talking to clearly doesn't know me at all - and instead of wanting to, has decided that they have me figured out; that they ‘get’ me. No matter what is discussed afterward, this thought stays prescient in my mind. It's not that they don't WANT to know more, it's just they have seen enough, and anything beyond that doesn't apply or fit their personal narrative of the individual they view in front of them. Worse yet is when I think of their kid, and how they're being compared to an adult. What child would be able to rise to such impossible standards? Does the child even know they're being judged by a clearly faulty comparison? Unfortunately, instead of coming correct and chewing the parent out for this pseudo-compliment that demeans their child, I end up not saying anything. What good would it do?, I think. Should I tell them about the struggles I had growing up, how they mirror their own child's issues, and how - even as an adult - I still have difficulties in daily life? That last question is an easy one to answer - absolutely not. It's bad enough to get treated as some sort of ‘miracle’ autistic, as the idyllic autistic offspring the parent wishes they had - but can you imagine how I'd be treated if that mask dropped? Well, I know. And it would be silence. Massive amounts of silence. And not the soothing silence of one's home or headphones - no, the uncomfortable silence that comes from an abrupt end to communication, socialization, inclusion. No longer given responsibility for significant or important tasks, not taken seriously when expressing an idea, thought, or opinion, and relegated to a shallow acquaintanceship that never establishes bonds of legitimate trust. But Jeanafer, I'm exhausted. I'm tired of just sitting or standing there and taking this gut-wrenching, so-called compliment. And though I maintain a job, pay my bills, cook my food, save money, have lasting friendships with people who truly care for me as much as I do them - referred to in common slang as ‘adulting’ - I still face difficulties as an autistic adult. And even though you have an autistic child, the fact that you compare them to me truly reinforces the fact that you don't know what my life is like. You don't know the days I've taken away from work because I just don't have the spoons to leave the apartment. Or when I'm so unable to function I can't even put on a fucking sock - not a pair, just one goddamn sock. Or the days that I'm so depressed I consider suicide. You don't know the days where I spend hours thinking that I don't truly have friends, but people that merely tolerate me. Or the days where I can't remember anything, especially people's names or dates or events, etc. Or the days I have literal trouble speaking and socializing, coming across as silent when I don't want to be. You don't know the days where I have the overwhelming urge to clean everything, draining me of spoons to where I can't do anything for days afterward. Or the days where my adrenaline levels are so high I can barely string words together in a coherent fashion, trying to come across as calm and factual, while my brain speeds on, my hands and my body shaking as it courses through my veins. Or the days when I physically stim because I'm incredibly happy and pleased with something, especially an accomplishment - even when it's something minor, like successfully trying a new recipe or getting all the tasks on my to-do list done in a day, or just enjoying something fully and in the moment. And you don't know every single day, wearing my mask so much that I honestly am unsure as to who I really am or what I would be like without it. Honestly, I'm afraid all you've ever seen of me is that mask. I know you've heard of masking, and I want you to know it is a seriously real thing. I knew about it before I heard the term; taking each social situation and conversation and piecing together the unwritten rules, guidelines, taboos, norms, rituals and embedding them through practice and application. Years of this created a much more accepted person based on the restrictive society, at the cost of my own mental health. As a child, I was desperate to be accepted, to have friends, to be included - because to do otherwise meant isolation. I forced myself to learn to behave like others behaved. Early on this resulted in a lot of trial and error - more error, because imitation and replication come across as mockery, and some people's behavior only works for them. It was hard, tedious and at times I never thought I'd figure it all out, at least not to the level I'm at today. I spent my college years getting an education in social relationships this way; and despite taking twice as long to earn a two-year degree, I'm glad I was able to learn how to make friends. But it comes at a mental cost. Do I let my autistic tendencies out? Do I even know, truly, what they are? Will they be accepted/accommodated in all areas of my life? What I do know is this: you do not know me. At least, not nearly as well as you think you do. And the fact that you refuse to acknowledge the person behind the mask - beyond your assumptions, beyond even the passive jealousy you have regarding my independence and advocacy - is increasingly eroding our once respectful and platonic relationship. You admire and cherish the mask rather than the autistic behind it, and I'm weary of wearing it. So I'm not going to, at least not around you, anymore. Maybe one day you will learn to accept me at face value; but considering the reality of masking that autistics deal with on a daily basis, I don't have much hope. Unmasked regards, Leo Jones
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Episode 18 - Autism, Sex and Relationships - Part 2
06/26/2019
Episode 18 - Autism, Sex and Relationships - Part 2
"People with autism don't have sex." "People with autism just aren't interested in sex." "People with autism can't maintain relationships, especially complex ones." These are just a few of the blatant myths that surround autistics, sex and relationships. Joining Leo Jones is 'Ruby' and 'Bloodfox', two autistic individuals in an ethical, consentual, non-monogamous relationship, to discuss different types of romantic relationships, BDSM, and more. This is part 2 of 2. ***Warning*** This episode has content that some might find offensive or obscene. As promised in the podcast, here's a small reading list recommended by my guests: - Shibari You Can Use: Japanese Rope Bondage and Erotic Macram - Complete Shibari Volume 1: Land - SM 101: A Realistic Introduction - Screw the Roses, Send Me the Thorns: The Romance and Sexual Sorcery of Sadomasochism
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Episode 18 - Autism, Sex and Relationships - Part 1
04/23/2019
Episode 18 - Autism, Sex and Relationships - Part 1
"People with autism don't have sex." "People with autism just aren't interested in sex." "People with autism can't maintain relationships, especially complex ones." These are just a few of the blatant myths that surround autistics, sex and relationships. Joining Leo Jones is 'Ruby' and 'Bloodfox', two autistic individuals in an ethical, consentual, non-monogamous relationship, to discuss different types of romantic relationships, BDSM, and more. This is part 1 of 2. ***Warning*** This episode has content that some might find offensive or obscene.
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30 Days of Autism Acceptance Challenge - Day 7: Favorite Autistic Blog(s)
04/09/2019
30 Days of Autism Acceptance Challenge - Day 7: Favorite Autistic Blog(s)
I am switching day 7 and 8, as the day 7 topic - The Autism Community - is not as easy to write about, and frankly, I've got a lot to discuss. In the meantime, enjoy! Below is a decent list of great blogs and pages to follow, but by no means complete nor in any order. I cannot pick just one favorite. AbledsAreWeird #AbledsAreWeird offers a brilliant taste of the everyday crap people with disabilities deal with. The Accessible Stall Podcast The Accessible Stall is a podcast that keeps it real about disability. Hosted by Emily Ladau and Kyle Khachadurian. Autistic Lincs - Lincolnshire Free Press (Based in the UK) The go-to place for all things Autistic Lincs including discussions on local and national issues, live video sessions, as well as the featured Autistic Lincs articles. Neurodivergent Rebel Rebelling against a culture of assimilation over individuality. #OpenlyAutistic writer, speaker, & artist. Want to know about #autism? - try #AskingAutistics! Radical Neurodivergence Speaking An abrupt, blunt, clear and direct blog that is very poignant and to the point. Autistic Hoya Excellent blog that started out focused on autism but has grown to include diverse perspectives and ways of being. Unashamed Voices of Autism A blog project where autistic adults & adolescents have a “mic” to say something uplifting & empowering to the autism community. Growing Up Aspie A comic about the struggles/benefits of growing up Autistic in a Neurotypical world. The Neurotypical Wife “I'm the autistic and otherwise neurodivergent wife of someone living with neurotypicalness. I treat him the way that some of you people treat your kids and it's totally okay!” Giraffe Party Created by an autistic writer in her mid-30s who lives in Southern California, as a way to give non-autistic people insight as to how she processes, why she is the way she is, how to help their kids/students/friends, as well as networking with fellow autistic individuals. Agony Autie 31 year old Autistic presenter & advocate. Diagnosed Ehlers Danlos, POTs, Endomitriosis & PCOS Videos, Interviews, Speeches, Lectures and Talks on Autistic Identity, Advocacy, Health, Wellbeing, Culture & Pride #stimdancing WE ARE HERE: a collection of autistic voices We are here. We have been here all along. Autistic people are a natural part of human biodiversity, and we are here to express ourselves in our own way. NEUROCOSMOPOLITANISM Nick Walker's notes on neurodiversity, autism, and cognitive liberty
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30 Days of Autism Acceptance Challenge - Day 6: Supports and Appreciation
04/09/2019
30 Days of Autism Acceptance Challenge - Day 6: Supports and Appreciation
There are so many people in my life that are extremely supportive, but for privacy reasons I'm leaving out their names. But I genuinely and deeply appreciate them, more than words can express. For the time being, I just want to briefly cover the supports that started me on the path that I find myself today: My parents - and especially my mom - I credit for so much support growing up, and ensuring that my life was a good one. I wrote a lot about my mom in my first blog post of the year, so if you want to know more click . I am also thankful for getting my diagnosis the way I did, instead of the usual doom-and-gloom lectures given by most medical professionals. My doctor at the time told me what I and my parents needed to hear most: “You have autism. You will be able to grow up, get a job, live on your own, get married if you want to, have kids if you want to. Autism is a part of who you are, and you have always been autistic. There are some things that you may need help with, but having autism in no way means you cannot have a life you choose.” But what permanently set me on a path of advocacy (self and otherwise) and activism was the Forum. Shortly after I was diagnosed, one of my teachers recommended me for the Forum, a 4-day camp in my home state that revolved around disabilities, the disability civil rights movement, self-advocacy, and more. I'll be honest - our country's view of disabled individuals had influenced my mind, despite the best efforts of my parents and others; I was averse to attending, simply because I thought all the other attendees would be so disabled I would be alone...the r-word did surface in my head at one point. It's not something I like to admit - but the fact that I held this bias despite my own diagnosis is clearly an example of just how much this bigotry has permeated our society. The Forum changed that - permanently. I was around other people my age with a variety of disabilities, coming from various financial backgrounds, ethnicities, etc. For the first time, I didn't feel left out or isolated in a group of people, which is what I often felt in school. The bias was eliminated, and in its place a core of advocacy and a strong sense of belonging. The forum taught me many things, most notably the disability civil rights movement and its leaders; up until then, the ADA was just an act kindly signed into law - instead of something we fought for literally on our hands and knees, chained to buses and buildings. Too often we overlook programs like the Forum for individualized treatments, because insurance won't pay for a few days at a summer camp. Yet the Forum has had and continues to have positive, proactive consequences for attendees. Being around others with disabilities different from your own, while learning about the disability civil rights movement and other forms of advocacy was life-changing. I feel that I am a better advocate and subsequently that has allowed me to successfully be the person I want to be. You can find out more about the Forum . - Leo Jones
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30 Days of Autism Acceptance Challenge - Day 5: Special Interests
04/08/2019
30 Days of Autism Acceptance Challenge - Day 5: Special Interests
My special interests change over time, but here's a few that have stuck with me for years: - Yo-Yos While I don't throw much anymore, I am still fascinated and enjoy yo-yos. I even still have a Hyper Yo-Yo case with nearly all of my yo-yos in it; my favorites include the Spintastics TigerShark, Henry's Viper, Yomega's Raider, and Bandai's Hyper Russell (a copy of the original Russell yo-yos, great at looping with a wooden axle). I still keep up on maintenance for them, and when I have the time and the inclination I will explore the current state of yo-yos and might even pick up some new ones. - Linux and FOSS (Free/Open-Source Software) This was borne from a frustration with Windows and the unacceptable amount of maintenance one had to do to prevent problems and avoid major disasters, and it specifically came about while running Vista. I first learned about Linux when I was in college, and was first introduced to Red Hat. With some research and a few live distributions on DVD (Linux isn't a monolithic operating system - there's literally thousands of adaptations, called distributions, created for a variety of tasks and purposes, even just for fun), I eventually migrated over to using Linux full time on all my devices. What I love about Linux is the control it gives me; I can literally change everything about the operating system if I so choose. I am not locked out of anything, and it stays out of my way. Currently I'm running Linux Mint on my main computer, Peppermint OS on my portable laptop, and I've got a simple NAS box running OpenMediaVault on a Raspberry Pi. At some point I might move to an Arch-based distribution, but for now I will stick with what I know. - Assistive Technology Even though I'm not nearly as involved as I used to be, I'm still very passionate about affordable AT devices, at one point advocating for such in the FOSS community. AT devices are incredibly and unnecessarily expensive, with costs ballooning to four figures and more, for what the specifications amount to a smartphone from 3-5 years ago. It's part of what I described as the Confinement Cycle, where a disabled person wants to live independently - but needs a job. So they need assistive technology in order to do the job; but the job refuses to pay for it, and unless the disabled person sues, that's highly unlikely to happen. The disabled person has to pay for it themselves - but depending on insurance, they may not be able to afford it. So how to get the money to pay for a device needed to obtain a job for the cash to get the device? No one seems to have an easy answer, and it's become even more difficult as government programs have been cut. Mobile devices can be an answer at times, but due to the way apps are handled by the two main smartphone/tablet OS providers, the cost is still significant - and in a number of cases, if the app stores deem the app to be in violation of their terms and conditions (or the just feel the need to pull the app), they can remove the app from the person's device. It's happened before, and I have no doubt it will happen again. FOSS and Linux are great foundations for future assistive technology, in terms of customization and in cost. Making that case - and changing the AT industry - will take monumental efforts. - Leo Jones
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30 Days of Autism Acceptance Challenge - Day 4: Reactions to “coming out”
04/05/2019
30 Days of Autism Acceptance Challenge - Day 4: Reactions to “coming out”
Day 4 and I've fallen into a pattern of answering these late at night - this one will get posted a bit late. My apologies; I will get back on time by the weekend. To be honest, I never called it “coming out” because I associated that phrase specifically with the LGBTQIA+ community, and as an otherwise straight white male, I assumed it wasn't my place to co-opt it. To do so, in my opinion, would be an appropriation that was unacceptable. When I was first diagnosed, I didn't really tell a lot of people - how do you actually tell them? How do you respond to their questions, namely “What is it like to be autistic”, when you have no comparison to draw it to? That question always bothered me, because I truly didn't - and in some ways, still don't - know what it's like to be autistic....at least in comparison to neurotypicality. I've always experienced the world this way, so asking is an assumption that autism is some sort of condition that you contract rather than begin life with. Like most autistics, I've had a narrow variety of responses to disclosure - “I'm so sorry”, “You are so brave", “Wow, I never knew you were autistic! I couldn't tell", and the one I abhor the most: “You're an inspiration!”. Often people just don't know what to say, and in that regard, I would recommend saying “okay” or “how can I support you?" Especially in autism communities with professionals and parents - but seldom anyone autistic - I am definitely treated differently when I disclose; my opinions, advice, wisdom are all checked and often regarded as secondary to those who aren't autistic but work with autistic individuals. Over time I've heavily moderated and controlled who gets to know my autistic status; unchecked outing of being autistic has caused detrimental effects in my life, so now I often wait to tell people I meet for the first time. I find out more information about who they are, what they do, their stance on issues - and if I feel safe enough to tell them, I will eventually. Unfortunately, this has combined with heavy attempts at ‘masking’ or ‘passing’; for such a long time in my life, I wanted legitimate friendships with people, to be able to date, to be taken seriously and valued just as much. But those don't come naturally, despite what most people believe - it requires you fit a certain paradigm, act a certain way, conduct yourself to a strict and contradictory set of societal norms, mores and taboos that are hardly ever written down, stated clearly, or even explained. Accessing the societal rule sets is nearly impossible to do, and requires years of practice to emulate. Depending on the scenario, masking does consume a lot of my spoons; at times I will cancel or refrain from taking part in an activity because I simply cannot handle it. I get exhausted to the point where I can no longer hold the mask - and bowing out is easier than risking permanent damage to relationships and social standing. This sounds depressing, but what's the alternative? Loneliness, isolation, unemployment, homelessness? From where I stand, the psychological cost of masking is incredibly high, but it's the only way to survive as an autistic - that is, if you do survive in the first place. Even I have, at times, contributed to the pressure forced upon autistics to conform; it's not something I'm proud of, and I am trying to avoid doing so now and in the future. This is not to say I've had nothing but negative consequences from my disclosure; on the contrary, I have genuine friendships with people who do not view my diagnosis as something bad but rather an integral part of who I am, and embrace it as they do with my personality. However, at my stage in life I've masked for so long that I'm not even sure what being without the mask would be like. Can I even tell the difference anymore? Have I passed so long that it's now hardwired into my brain? Perhaps as I age I will find more freedom in disclosing - but for now, the consequences are simply too costly in my personal life to be “out” on a public scale. - Leo Jones
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30 Days of Autism Acceptance Challenge - Day 3: My diagnosis/discovery story
04/04/2019
30 Days of Autism Acceptance Challenge - Day 3: My diagnosis/discovery story
So I kind of covered most of this in Day 1; I'll elaborate a bit more, but there's not much else I wish to disclose for privacy reasons. If you read Day 1, it's pretty much the same here. I was diagnosed 17 years ago, at age 17; growing up I felt the most secure by myself, but had a lot of trouble fitting in, reading other people, making friends, and some executive function issues, along with sensitivity to being in claustrophobic spaces and around loud noises. As a kid, autism was not a word tossed around a lot; in fact, aside from the errant Rain Man reference, autism wasn't brought up. The image conjured up in most people's heads was a non-speaking white male child who rocked, hummed, hit themselves and generally was treated more as an NPC (Non-Playable Character for those unfamiliar) than a human being with thoughts, dreams, wishes. So when my family and I considered being diagnosed, the first couple of trips to psychologists and psychiatrists for my diagnosis didn't go as planned. The first doctor declared that it wasn't me, but my parents who were the problem - a welcome endorsement for a then-13-year-old. However, this was not the case; even at that age, I knew my parents were not the cause of my difficulties, my issues ‘fitting in’ or making long-term friends, among others. They loved me, worked to provide for me, and always had my back. The second doctor, honestly, probably needed to go back to college. After describing issues I had, he declared that what I needed wasn't medication, nor some sort of therapy, but BOOT CAMP. Why? Well, because it worked for his son. Apparently bias and control groups were not something he learned while getting his degree. Fortunately, my dad considered this to be a non-starter and a clear indicator of what he called “sub-standard bullshit not worth the co-pay”. He made it clear that while I had difficulties, my behaviors didn't warrant something as drastic or radical as being sent off to boot camp, and found such a suggestion completely unacceptable. Finally, the last doctor we talked with diagnosed me as Autistic (at that time, I fell into the DSM-IV category of Asperger's Syndrome), and instead of the usual doom-and-gloom lectures given by most medical professionals, he told me what I and my parents needed to hear most: “You have autism. You will be able to grow up, get a job, live on your own, get married if you want to, have kids if you want to. Autism is a part of who you are, and you have always been autistic. There are some things that you may need help with, but having autism in no way means you cannot have a life you choose.” Afterward, my mom took us out for ice cream - this was a time of joyous discovery, finally an answer to the questions that lurked around me my entire life - why do I feel so different from other people, and why is it so difficult to understand them? Why am I different? Is there something wrong with me? We had something to research, to explore, a major facet of who I am to seek out and study. Despite societal pressures, the way my doctor and my parents handled my diagnosis made a major positive impact on how I viewed autism, and how I viewed myself. We had something to research, to explore, a major facet of who I am to seek out and study. Despite societal pressures, the way my doctor and my parents handled my diagnosis made a major positive impact on how I viewed autism, and how I viewed myself. Nearly two decades later I realize I was incredibly fortunate to get such a diagnosis; imagine how we would be treated if this was the way most diagnoses went! - Leo Jones
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30 Days of Autism Acceptance Challenge - Day 2: What I love about being autistic is...
04/03/2019
30 Days of Autism Acceptance Challenge - Day 2: What I love about being autistic is...
...the perspective and view being autistic has granted me in my life. This one is hard to answer, because I've never known what it's like to NOT be autistic - it just is who I am, similar to my eye color or the way my earlobes hang. My mechanical and technical ingenuity I've always associated with family, but looking back it's highly likely they were also autistic, and passed such traits down to me. I don't always like to associate various skills or interests or “superpowers” with autism, mostly because there are a lot of autistics like myself that are not savants. We generally are not experts at playing instruments, or creating artwork, or singing, or coding or even building things. While I do excel in some areas, it's not something that I would consider newsworthy - or social media worthy. Not everyone is the same, and that goes for autistics as well. But what I love about being autistic is that I am able to recognize discrimination, racism, bigotry, and hate. Allow me to explain. Sometimes I wonder what I would be like if I were never diagnosed, if I just...existed. No clear understanding of who I am, no community to share and belong to, just an awkward and often painfully lonely existence, with only a diagnosis of depression to guide me. Would I still feel lost? Would I ever become comfortable with who I am? And much more importantly: how would I view persons with disabilities, neurodiverse individuals, and non-cis human beings? Who would I be - the person I am today, or someone much more fearful, closed-off, unrepentant, possibly inept and refusing to recognize their own privilege? Would I ever have had the opportunity to truly grow as a person into someone I actually like? I honestly don't know. Being able to embrace others that are not like me, that don't follow strict social norms and mores, that are expressive and engaging and knowledgeable and have bodies & minds that aren't typical - that's something that I try to hold onto as hard as possible. Whether or not my autism is a key part of that, I am unsure; however, my activism and advocacy would most likely not exist if I was not autistic - at least, not as much. Being autistic is something no one can ever take from me. And I embrace it, with all aspects, both positive and negative, because it is an inseparable part of my existence. Perhaps that's what I love most about being autistic. - Leo Jones
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30 Days of Autism Acceptance Challenge!
04/02/2019
30 Days of Autism Acceptance Challenge!
As a part of Autism Acceptance Month, Neurologic is participating in the #30DaysofAutismAcceptance challenge! I found the image above last year at along with some excellent prompts - I wasn't able to do it last year, but this year I'm committed to completing the 30 Day challenge. You can also participate, no matter what social network, forum, or other site you use - just make sure to include the hashtag #30DaysofAutismAcceptance - and if you can only do certain days, that's fully okay! For those who cannot view the image, here's the topics for each day: Day 1: Intro post Day 2: What I love about being autistic is... Day 3: My diagnosis/discovery story Day 4: Reactions to “coming out” Day 5: Special Interests Day 6: Supports and Appreciation Day 7: The Autistic Community Day 8: Favorite Autistic Blog Day 9: Favorite Autistic-Owned Business Day 10: Sensory Life Day 11: Stims Day 12: Favorite Autism Charity Day 13: Family Day 14: Routine Day 15: Everyone Should Know... Day 16: Work/School Day 17: Accomodations Day 18: Someday... Day 19: I hate it when... Day 20: Communication Day 21: One thing other people don't understand Day 22: Dispel a myth Day 23: Can't live without... Day 24: Political Issue Day 25: Symbols Day 26: Favorite Autism Book Day 27: Identity Language Day 28: Dealing with meltdowns Day 29: Famous Autistics Day 30: Acceptance Means... Join Neurologic in celebrating ourselves and our fellow autistics during Autism Acceptance Month! Day 1: Introduction Greetings, everyone - my name is Leo Jones, and I'm in my mid-30s as I write this. I was diagnosed 17 years ago, at age 17; growing up I felt the most secure by myself, but had a lot of trouble fitting in, reading other people, making friends, and some executive function issues, along with sensitivity to being in claustrophobic spaces and around loud noises. The first couple of trips to psychologists and psychiatrists for my diagnosis didn't go as planned. The first doctor declared that it wasn't me, but my parents who were the problem - a welcome endorsement for a then-13-year-old. However, this was not the case; even at that age, I knew my parents were not the cause of my difficulties, my issues ‘fitting in’ or making long-term friends, among others. They loved me, worked to provide for me, and always had my back. The second doctor, honestly, probably needed to go back to college. After describing issues I had, he declared that what I needed wasn't medication, nor some sort of therapy, but BOOT CAMP. Why? Well, because it worked for his son. Apparently bias and control groups were not something he learned while getting his degree. Fortunately, my dad considered this to be a non-starter and a clear indicator of what he called “sub-standard bullshit not worth the co-pay”. He made it clear that while I had difficulties, my behaviors didn't warrant something as drastic or radical as being sent off to boot camp, and found such a suggestion completely unacceptable. Finally, the last doctor we talked with diagnosed me as Autistic (at that time, I fell into the DSM-IV category of Asperger's Syndrome), and instead of the usual doom-and-gloom lectures given by most medical professionals, he told me what I and my parents needed to hear most: “You have autism. You will be able to grow up, get a job, live on your own, get married if you want to, have kids if you want to. Autism is a part of who you are, and you have always been autistic. There are some things that you may need help with, but having autism in no way means you cannot have a life you choose.” Afterward, my mom took us out for ice cream - this was a time of joyous discovery, finally an answer to the questions that lurked around me my entire life - why do I feel so different from other people, and why is it so difficult to understand them? Why am I different? Is there something wrong with me? We had something to research, to explore, a major facet of who I am to seek out and study. Despite societal pressures, the way my doctor and my parents handled my diagnosis made a major positive impact on how I viewed autism, and how I viewed myself. Nearly two decades later I realize I was incredibly fortunate to get such a diagnosis; imagine how we would be treated if this was the way most diagnoses went! Nevertheless, I'm pleased that you're reading this, and hope you will enjoy the next 30 days of posts. Warmly, Leo Jones
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Episode 17 - Unashamedly Autistic
04/01/2019
Episode 17 - Unashamedly Autistic
Too often, autistic voices and perspectives are dismissed, ignored, or admonished in our world, especially when we try to assert ourselves in matters of policy, governance and culture. Frequently in news stories and social media posts, we are forced to take a back seat, as the focus is often on parents, siblings, relatives, friends, or even co-workers and classmates. Countering that chronically persistent narrative is the , where autistic adults and adolescents have an open mic to broadcast their own story to the autistic community, and can safely describe what autism is like from their own perspective. In this episode, I'm joined by Alison Knight, creator, who started Unashamed Voices of Autism last September. -- Links: Unashamed Voices of Autism Project Website: Unashamed Voices of Autism Project Facebook Page: Unashamed Voices Talent & Quirk Show Facebook Page: Unashamed Voices of Autism e-mail:
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Episode 16 - Autism License & Registration, Please
03/05/2019
Episode 16 - Autism License & Registration, Please
Good evening - please hand over your autism license & registration. You have informed the DVLA of your autistic status, correct? I hope so; if not, you're facing a $1,000 fine and possible criminal prosecution - in addition to your insurance refusing to cover your claim or cover your damages in case you got into an accident. Calm down, I'm just doing my job; driving while autistic is only a crime if you refuse to disclose your autistic diagnosis, regardless if you passed your driving test or not. Take it up with the DVLA if you disagree. Now, have you been doing any....stimming...this evening? -- Sources: Guardian Article: Ann Memmott's Article:
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Episode 15 - Drones, Databases and Divided Communities
02/24/2019
Episode 15 - Drones, Databases and Divided Communities
Seclusion, segregation, surveillance, registries - what do these things have in common? They're all current efforts to quarantine, separate, record and monitor autistics living today, and in the future, implemented in the name of safety and security for autistics with high support needs. In this episode, Leo Jones discusses autism registries, intentional communities, seclusion rooms and 24/7 tracking - and illustrates how these teach autistic children that they have little to no autonomy, little freedom to make their own decisions, and no semblance of privacy, which creates further problems for them as adults. -- Sources:
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A Time To Be Alive
01/12/2019
A Time To Be Alive
I've tried to write this post countless times, but haven't really found a satisfying way to begin or end it. So I'm just going to lay it all out here, and hope it makes some sense at the end. Last year finalized, at least for me, in a cacophony of heartache, depression, foggy numbness, triumph, annoyance, surprise, joy, and an overall feeling of being absolutely and utterly drained. In September, I hit a road block. Between a lack of satisfaction with recent episode recordings and tension over a new contract at work that was long overdue to be enacted, I had to walk away for a bit. I considered starting to blog in addition to recording episodes as a way to make more meaningful content on a more frequent basis while also manipulating my time so that there was more resources for episodes to be created, recorded, edited and published. Looking towards other autistics who record and write, it seemed like a smart idea that would also adapt with my functional needs. -- October came and went in a flash; the work contract was approved, but due to a significant number of persons quitting, my schedule ended up getting temporarily changed. I do not do well with change - in my personal life I can cope okay, even sometimes thrive; but at work, it ends up causing major difficulties that impact outside the workplace. So, with a temporary schedule of a few nights followed by some days (I chose this as a compromise so I wouldn't be stuck on the night shift permanently), most of my activities outside work were derailed. Neurologic was put on hold until I got used to the new schedule, using whatever time I could to write down topics, rants, ideas for future episodes and try to work out how I wanted to schedule blogging and recording for better consistency. -- My regular schedule returned in November as work hired people and quickly brought them up to speed; things were looking up - I got a raise, my old schedule back, and Thanksgiving was approaching. It felt like it was going to be a better holiday season, even with the cold weather I absolutely despise. A new holiday episode started to form in my head, even as I ran out of time to write or record something about Autistics running for public office. Then, I got the phone call. It was my Dad - my mom had fallen down in the bathroom and he couldn't get her back up. I left work and headed straight for the hospital, thinking about what might have happened, how long would she be out, knowing her absolute avarice towards doctors and nurses would shorten her stay regardless of any professional recommendation. Turns out, she had suffered a major stroke - a stroke that took out her entire left side. She could no longer talk or move about without major assistance; swallowing and even breathing was extremely difficult. I went into advocate mode, immediately telling others what to do, asking her what she wanted, having her respond by grasping my two fingers in accordance to a number - 1 being “no” and 2 being “yes”. I argued with my dad about her DNR order that she had stated many, many times throughout her life (and also had placed in her will) and dealt with the nursing staff. I held my tongue and my rage when a nurse talked to me about my mom “going to god”, which lit up so many emotions in my brain - but I knew if I lashed out at her I would most likely get thrown out of the hospital. I'm still quite bitter about that, but the nurse that took over the next shift was much more appropriate and considerate. Despite years of conversations about her end-of-life choices, it was still despairingly difficult to be at that hospital. But our discussions allowed me to cope better with her being there; I knew exactly what she wanted, when she wanted it, how she wanted it. No guessing games, no perpetual arguments, just clear guidelines and steps to take. My emotions were rocky and unstable, but I had that clarity I could cling to even with the torment of my grief. My mom lasted through Thanksgiving, but unfortunately we couldn't bring her home for the holiday; we spent it in hospice - better than a hospital room but not really the way she wanted to go out. My last memories of her were telling her what I had learned, that I would take care of dad, and that I loved her very much, and that I was thankful for my life. She told me - as best she could - that she loved me too. -- I haven't really discussed my mom much with many people, but I credit her with a lot of my development as a person, and even as an Autistic. My diagnosis (only given after visiting three different psychologists, with one recommending boot camp because it worked for his son) was seen as a moment of discovery, fascination, understanding, a new frontier of exploration of who I am. We went out for ice cream that day. I don't think mom ever understood the neurodiversity movement, but she wasn't against it - and it was difficult to explain it when I was learning about it myself less than fifteen years ago. She did teach me to work on controlling my stims, be more social, learn how to engage in conversation, and make eye contact, all of which could be considered beneficial in surviving the socio-economic world we live in. It has paid off in some ways, but in others, I had to forge my own path, learn on my own, figure things out my way. One of her favorite memories of me that she would always bring up when I was feeling lost or defeated was from my time at the local two-year college. At the time I was making decent grades but they began to slip; I was skipping classes to hang out on the quad and in the student union, staying out late at night with people I met. We were arguing about it one day when I finally just turned to her and burst, “Mom, I want to learn to make friends!” She backed off, supported me, even as my academic performance suffered, and I sometimes made questionable choices regarding the friends I was making. What she learned, she told me, was that I knew what I wanted, and I was going after it - and being able to see that certainty, that drive, was more important to her than the grades I made. There is no college for understanding relationships, platonic or otherwise, but after twelve years of feeling left out, forgotten, made fun of, and in general never truly feeling like I belonged....to my mom, my actions made sense. I don't think my mom was wrong to push for my “normalization” as it were, mostly because she just didn't know any better, she didn't have nearly any of the information and resources that are available today. I'd also like to think my existence challenges the stereotypes that plague Autistics across the globe as being incompetent, incoherent, violent, lacking in empathy, etc, etc. Not to show that we're like everyone else, but that who we are is much more diverse than most anyone can understand, deserving in equality, accommodation, and a voice that is heard louder than those who claim to speak for us. Would she have raised me the same way, had I been born closer to this period of time? No, I don't think so. With the wealth of autistic authors, speakers, and professionals accessible to the public, she would have definitely taken notice and tried to learn as best she could for my benefit. She wanted to be a better parent than her own were, and I'm confident that had she the resources of today, I would still be who I am - just more aware and embracing of my Autistic self. My mom was a complex, bright and tenacious woman, who treated others with kindness and generosity, a friendliness that was somewhat disarming and uncommon. She had a genuine passion for the arts, specifically theater, impressionist artists and a distinct taste in music. I will miss our conversations, her hugs, the food she made, and her creativity that came out in a multitude of ways. She will be deeply missed. -- December was a bit like November, but in reverse - with the bad before the better. My grief and lack of meaningful bereavement time (work gives only three days for an immediate family member) took its toll on me psychologically, which then turned psychosomatic in painful sensory and anxiety issues. My skin became severely oversensitive to any cloth - sweaters, pants, jeans, even the sheets on my bed; it was as though my nerves were exposed to whatever I wore. Typically warm temperatures were suddenly not enough, as I was constantly cold; I frequently drained the water heater from how high I had it set during showers. My anxiety went through the roof, and it was like I was piloting my body but no longer had control. Sometimes I would get dizzy and feel like I had a sinus infection, with a combination of pressure and vertigo that some days never seemed to relent. I came down with an actual sinus infection shortly after attending an important sports game, trying to be around some friends and seek out some fun as a way to de-stress and relieve some of my grief. Being out sick from work, oddly enough, helped me to feel better. Though at times, when I hear, or see, or smell, or taste, or even touch something that meant a lot to my mom, these physical manifestations of my grief sometimes come back. It can be very frightening and disorienting to try to hold close the memories of someone, yet have them cause such harm. I worked Christmas Eve and Day. Major holidays are usually quiet, pretty relaxed, and any problems are seldom numerous or minor. Also, the holiday itself just seemed less important, less meaningful, with a loss of whatever ‘spirit’ I assigned to it ever since I was a child. Boxing Day, however, has become more to me, especially after recent events. See, back in 1914 during World War I, there was an unapproved and informal Truce held along the Western Front. Opposing soldiers exchanged gifts, food and drink, and even played some soccer with each other. They buried their dead and sang together, celebrating a holiday that was universal to all sides at the time. While it didn't last (word of the Truce eventually spread to commanders, who quickly rotated those soldiers off the front lines), it marked something unique - a brief period of time in the middle of horrific violence and death where peace, camaraderie, and humanity bloomed. Where I live, there is an annual soccer tournament called The Truce, and it includes 3 vs. 3 matches, a buffet of breakfast foods, and English Premiere League soccer matches played on multiple TVs (and even on the main theater screen). It's fun, pressure-free, and is not constrained with postmodern messages about any reasons for a season. Attending this year was especially important, as I got to take Dad with me, along with a couple of friends who were able to get the day away from work. Creating our own tradition, I think, has and will do much to help us cope as the years continue. -- So now it's January, and I'm finally able to get around to posting something to Neurologic. Fortunately, there's not a lack of ideas - there's a stack of episode topics, including: intentional communities and registries, media representation and stereotypes, net neutrality and online autistic culture, why autistics should run for office, advances in neurodiversity, ABA therapy, etc. All topics that Neurologic will attempt to address this year, at a hopefully more consistent rate. 2019 is definitely looking to be an interesting, if not stressful, year for autistics. Now more than ever, it's truly a time to be alive. Thank you for reading, for listening, for sharing. - Leo
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From The Desk of Neurologic
10/26/2018
From The Desk of Neurologic
Truly, what differences and changes a year makes. Over a year ago, I started Neurologic as an outlet for my advocacy, a way to remain an autistic activist while exploring issues and topics that surface among the autistic and autism communities. Podcasting seemed to be the less traveled road, with very few autistic podcasters broadcasting their shows (at least that could be searched) and the format itself consistent in its growing popularity. However, between learning how to edit audio recordings, securing interviews, researching topics and issues for episodes, and dealing with life obligations (school, work, etc) - it's definitely been a challenging endeavor.....but it's worth it. Between learning more about neurodiversity, the autistic community, and the accomplishments - as well as trials - of autistics across the world, Neurologic has become something of a conduit to not only transmit what we as autistics are advocating for, but also to gain knowledge and understanding of why. Starting this month, Neurologic will begin blogging to supplement episodes, improve content and more frequently post about issues that are very important to us as autistics. Adding this visual component will hopefully also improve the accessibility of content produced and make it easier to share with others. Does this mean fewer podcast episodes? No. I'm not planning on recording less; however, securing guests for interviews and episodes has recently become more difficult due to scheduling conflicts, which also hurts the timeliness of the topic they're joining me to discuss. After all, conversing about Autism Acceptance Month in August would be quite odd and not very timely. Blogging will enable the space to be more consistent with Neurologic's content and free up more time to record better, in-depth episodes with unique guests that have a variety of perspectives in the autistic and autism communities. Where Neurologic has focused on trying to release at least 1-2 episodes a month, blog posts will be more frequent - but also less scheduled than the podcasts. But don't worry; all blog posts will be available here, and also shared on Neurologic's facebook page: As always, I welcome any questions, comments, concerns, recommendations and more; you can reach Neurologic through the facebook page above, in the comment section below, or via e-mail: [email protected]. Your host, Leo Jones
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Episode 14 - Autistics Can't Be Astronauts
09/02/2018
Episode 14 - Autistics Can't Be Astronauts
Is it true that Autistics can't be astronauts? Sure, there are possibly a few autistics who have applied, but is such a dream....realistic? Leo Jones discusses a recent interaction with a post from a parent of an autistic child who persistently reaffirms their conviction to one day visit the moon, as well as touching on the malevolent implications of "intentional communities" and more. Sources: NASA Astronaut page: NASA Astronaut application: Information regarding "Intentional Communities": The Ford Foundation's Intentional Community Plan: PDF citing term 'inclusion zealot': Information about the Judge Rotenberg Center and their electric shock devices:
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Episode 13 - Just Another Token Episode
05/22/2018
Episode 13 - Just Another Token Episode
Even when engaging in activism and advocacy, it's not entirely obvious when one is being genuinely valued, or being stigmatized and admonished. How can one tell when they're tokenized? In this episode, Leo Jones discusses autistic tokenism, signs that you might be an autistic token, and ways to fight it.
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Episode 12 - A Dark Past, A Brighter Future
05/01/2018
Episode 12 - A Dark Past, A Brighter Future
Closing on Neurologic's first Autism Acceptance Month, Leo Jones reviews April's episodes, discusses a new claim that Hans Asperger - of whom the term Asperger's Syndrome was named - was a Nazi, and asserts that the new rate recently released by the CDC (1 in 59) is a positive shift for the autistic community.
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