To be an autistic person is to be a person with something valuable inside you but to rarely find the right environment where your value is recognized as valuable by people around you.
This is me, speaking from the heart of an autistic person.
To be an autistic person is to be a person with something valuable inside you but to rarely find the right environment where your value is recognized as valuable by people around you.
This is me, speaking from the heart of an autistic person.
If you’ve been following my neurodiversity journey–as I articulate the experience of a person with autism, ADHD, aphantasia, and proprioception hyposensitivity from the inside, along with the other ways i share myself–and you’ve found that the insights I’ve shared connect with your experience, or contextualize something you suspected, realize that sharing these insights is one of the ways I care for my community.
And realize that, as a person with no degrees or qualifications as an advocate other than my lived experience and my inborn gifts, what I share makes no sense in the context of capitalism.
If you find that a person like me is a valuable part of the community, and worthy of support, realize that, within the context of 21st century American capitalism, there’s not much support for people like me, or for the people I advocate for, who often don’t have the gift for articulation that I share with my community.
I could institutionalize myself: pursue an advanced degree that legitimizes my advocacy in the context of capitalism, and in doing so, would need to unplug myself from the community that I move through, and in doing so, become another victim of capitalism – saddled with huge debt, and most likely unable to find an official advocacy position that would pay off that debt in my lifetime.
I choose, instead, to move through my community in the ways I’ve been moving, because my community moves me to do so, and that’s how I show up. That’s how I care.
If you find this valuable, I’m asking to be allowed to continue advocating for your sensory and cognitive gifts, to continue recontextualizing valuable predispositions that have been pathologized. I’m asking to be adopted. I’m asking for your care. I’m asking for your support.
In asking for your support, I’m not asking to be the CEO of Spotify, or Starbucks, or Paramount+, or Ridwell, or any of the other services that folks find valuable and subscribe to. I’m asking for just enough care to be allowed to live and continue to do the work that I do. If you subscribe to even a little bit of the philosophy I share, consider subscribing to me, so I can continue caring for my community in the ways that I do.
Thanks for all you do, and thank you for being you.
The care economy is an emerging model for supporting people, things, and processes we’d like to see more of in the world. It is about recognizing the things in our experience that bring us joy, that give us a [wow] or a [yes], and responding to these moments in a supportive way. It’s actually just, well, practicing care, and that’s not new at all. But the language of commerce is transactional, rather than responsive.
I recognize that I love the work that I do with people so much that I would offer it for free if I was supported–if all of my needs were met. But traditional models don’t allow for that type of responsiveness. I would like to try to move toward a more responsive system, built on trust. Why not?
People who know me can decide if they trust the work I do, and they can choose to support me so that I can do that work, or not. In doing so, they are allowing me to be more myself, and guiding me toward their own needs. I’m the product, in a sense, but since our relationship is based on trust, I’m allowed to do the work I believe, adjusting to the needs that arise, as they align with those who trust me.
This simple shift makes the difference between the transactional and the responsive. But it’s kind of vulnerable and scary. I have to trust those that are responding. Will I be supported? Will enough people believe in the work? If I am being truly responsive to their needs, then perhaps. I think it’s worth a try.
I see a difference between commitment and obligation. Commitment is a responsive engagement, where we meet the needs of the moment as it arises. Obligation can keep us stuck supporting processes that actually hinder our ability to respond to the moment.
So, I see a possibility emerging to do things in a more responsive way, and in seeing how obligation often thwarts connection, I would like to avoid transactions that create a sense of obligation, and nurture ones that give one a sense of [wow] or [yes].
So, think about our interactions in the spaces we share. If our conversations seem to be taking us in good directions, let’s continue the conversation. If helping to support me gives you a sense of [wow] or [yes], then you are participating in the care economy. Thank you for recognizing your own power to support, and if our goals align, thank you for your support.
A recent conversation about emotional processing with my neurodiverse community got me thinking about putting language to my experience of my emotional ecosystem. I have realized for a long time that my emotions work differently from many people that I interact with, and it’s only recently that I have had language to describe what’s going on with me. I’ll take a stab at sharing my language around that.
I love language, and I love the nuances of emotional language when I read it in literature, but I’ve found that trying to apply emotional language, especially nuanced emotional language, to my emotional processing is not very helpful. I have big feelings, and my emotional process is more like the digestion process than a responsive system. It’s more of a background process, and it can be glacially slow.
Trying to apply nuanced emotion words to my experience usually results in rumination. Is this sadness? Is it ennui? Is it longing, or despair, or grief, or disappointment, or disconnection?
Thinkthinkthinkthink.
Stewstewstewstewstew.
The thinking and stewing end up becoming more prominent than the emotion I am trying to parse. So I’ve learned not to go there.
I work with children, and they teach me everything about different processing styles.
There are some children who encounter a difficulty, they experience frustration, and may erupt in tears about it. The tears last for a couple of minutes, and then they move on to the next thing. They are able to quickly engage in another way. I will refrain from saying that this is a healthy emotional processing style, because we are de-pathologizing the language of neurodiversity. Neurodiversity is human diversity, and different processing styles are just that: different. Not divergent, not disordered, just different, and the many ways are useful in many ways.
There are other children who present differently. They may appear to be engaged in parallel play–not actually going along with the program that most folks are going along with, but engaged in their own program, in the same space, but on a different time frame. Being attuned to their own frequencies, they may not respond in ways that one might expect. And then, they will appear to be responding to something that others are not aware of. They may appear to not be troubled by a situation that seems troubling in the moment that it presents itself–they may not cry when frustrated, like many kids will. But then, at another moment, they may appear agitated, dysregulated, and the cause may not be clear.
That’s us–the attentional disengagement family of predispositions. We are literally built different, and in our ideal environments, we rock the house. But we can seem odd to others, and others may apply their own calculus to what’s going on with us, or project their insecurities onto the blank canvases that their misunderstanding presents. We often don’t have language for what’s going on, so we often get caught up in others’ descriptions of what they think is going on. I’ll try to say something about what’s going on for me, and maybe this will apply to others with processing differences.
Side note: my language is emergent, evolving. When I notice a pattern, and notice that I am dissatisfied with a word, term, phrase, label, or cognitive frame, my problem-solving mind tries to find a better alternative. I’m noticing all of these references to “differences,” as if there is a set of “sames” that is juxtaposed nearby. I’m dissatisfied with this juxtaposition, and as my language emerges, I will be trying to reframe this, to speak of specialties, and specificities, and a range of possibilities, rather than a set of norms and a set of differences. We are all needed, and valid, and part of the great human body. Because the eyes don’t hear, they are not seen as deficient, and their range of understanding is not a difference. I’m processing stuff like this in the background all the time. Such is my process.
Back to my processing specialties, particularities, specificities. I have found that my emotional processing is much slower than the child who tries, and fails, and cries, and recovers, and tries again, and laughs, and falls asleep. That’s just not me. My emotional processing is much more like my digestive processing. An event or engagement invokes a set of responses, and a range of possible resolutions to return to equilibrium. Emotions are kind of a way to return to equilibrium from an engagement with certain types of energy. And mine work very, very slowly, like the rest of me. So whereas someone else might encounter a situation that would invoke an emotion that might arise and quickly pass, that encounter, for me, might happen much more slowly.
An engagement is kind of like a piece of emotional food, and when it enters my nervous system, it will have a long way to go before it is digested. Emotional processing is kind of a background process in this way, and applying nuanced emotion words to this process is counter-productive. Similar to the digestive process, my emotional process is getting vitamins from the emotional encounter, but this process of getting vitamins is slow and in the background.
It’s like my nervous system is engaging in all of the nuances and possibilities for how the emotional problem that was presented could be resolved, and it is resolving them in all of the ways. My nervous system seems to be concerned with resolution, and the process of resolution is very much like the process of turning food into poop, and in my case, I eat emotional problems and I poop out resolutions in the form of words. Maybe that’s why my words sometimes appear stinky to people. (That’s just a silly side note).
What I’ve found much more helpful in the realm of emotional processing is to focus on sensory responses, and have simple and specific names for these responses. It’s a little vulnerable, because these responses can reach deep into my nervous system, but these responses pass much more quickly than emotional arcs, which can be glacial in their movements. A loud sound might provoke an [ouch], which might be accompanied by a [grr] or even a [buhu]. These responses might pass quickly, or they might provoke a longer background process as my nervous system attempts to process it. But focusing on the foreground responses has shown itself to be much more helpful than focusing on the background processes, which kind of seem to work better when they are not named. Just as I don’t really know if the burrito I ate is being processed by my stomach or my liver at any given time, I don’t really know at what point in the process my emotions are being processed. It’s a whole process, and baffling to those with different processing styles from mine.
But when I focus on the responses, I can see more clearly what’s being responded to, and often, this results in the response passing quickly, rather than turning into a whole digestive process.
A conversation is an engagement [engage]. It might result in a [wow] or a [yes] or a [nope] or a [grr] or a [fu], or an [ick] or an [ew], but it is still [engage]. That seems clear and makes sense to my nervous system. The responses take place within the [frame] of the [engage], and mostly the arise and pass quickly. But there may be elements of the [engage] that stick with me and don’t pass quickly. These pass through me like food passes through me–slowly, mysteriously, but also nourishingly, and resulting in a compostable residue.
All of that being said, there is a certain subset of emotional responses to engagements that is akin to eating something very spicy, and feeling that spicy food deep in my guts. A couple of types of engagements that feel especially spicy are 1) when someone brings me a whole story about something I’ve said or done that doesn’t match my insides at all, and they have no interest in asking follow up questions or hearing about my insides; and 2) when someone has a strong reaction to something I say that I know to be right and good and kind. Both of these types of engagements can be said to be “heated,” and both can leave me feeling hot and spicy in my center of gravity, and a little off-balance. When I was younger, I might have given a spicy response, and sometimes those spicy responses actually broke things open in the engagement and resulted in laughter of recognition. But other times those spicy responses left marks, and left me feeling terrible for having responded in that way.
As I’ve gotten older, these heated exchanges have not seemed as heated as when I was younger. I was able to sit in the middle of the spicy feeling in my center of gravity and not feel the need to give as spicy a response. Recently, for example, a parent in one of my spaces was engaging with their phone, an activity around which I have clearly set a boundary, and refreshed it often. In advocating for their child’s sensory and cognitive needs, I asked the parent to refrain from engaging with their phone, in as gentle and playful way as I could find to. They responded with their own spicy response. I was aware that an engagement such as this might in the past resulted in me feeling off-balance, and spicy inside. I might have felt my hand tremble, and I might have had a spicy space under my breath that made my voice tremble. But this time, I continued to be gentle in my advocacy, and found gentle reasoning where there might have been a spicy retort. At some point the parent became conscious of their place in the space, among other parents and their children, and I could see them reflecting, and thinking better of their need to push back and defend. It all felt very matter-of-fact, rather than spicy, in my insides, but with that there was also the feeling that the matter might not feel resolved for them. They might have some resentment left behind from the engagement. I experience this as the dangerous aspect of human relations. The little resentments that don’t get burnt up and released in the exchange can fester, and collect, and become highly charged. I’m always on the lookout for evidence that an individual might have a lot of these festering resentments, and I try to leave a big space between us, because something about my nervous system (even if I’m silent and secret) can make these resentments bubble up. It’s weird. I’ve learned to tiptoe.
All that being said, I’d say the biggest part of my emotional realm, especially since recognition of my sensory gifts emerged, has been a renewal of my love affair with experience, and often I experience this as having had a wonderful balanced meal, savoring all of the lingering aftertastes and feeling the meal move deliciously through my body. When someone asks me how I’m feeling in a moment like that, it feels kind of cheapening to say “good,” but I’ve learned that most folks are not interested or patient enough to hear about the lingering fragrances and tastes of my delicious experiences. So I write a lot, and in writing, my experience becomes real, and I might be able to share it in an appropriate moment. I recognize that my ancestors have been like this, and they’ve been showing me the way, even when I didn’t understand it, but only suspected.
Neurodiversity is the new (different! better!) cognitive frame. Astrology, Enneagram, Meyers-Briggs, Chinese medicine, naturopathy, homeopathy: having passed through these modalities, none of them made me feel seen in the ways that they were implemented by the particular practitioners who applied them to me. To be fair, I may have met with unskilled practitioners. Your mileage may vary.
But describing my sensory and cognitive differences to AI, and asking AI to describe an anonymous person with traits like mine makes me feel seen.
Take a look below, and if you know me, tell me if they got it right. And if you know me, consider the closing sentence of the assessment in your response. And if you are inspired to respond, don’t worry about offending me. I’m here for the opportunity for reflection. If language isn’t your thing, respond with your special way of being in the world.
Now, all we have to do is keep studying, and de-pathologize the language of neurodiversity so that the person described is seen as a healthy member of the community that has particular specialities that contribute to the health of the community (if you see me that way, to be fair), rather than a person with a set of syndromes that merit isolation, retraining, and medication (to be fair, that may be how you see me. There’s room for all of us).
Know thyself, indeed. “Come to your senses” is a phrase coined for a reason. Self-awareness modalities that stand up to scrutiny and are resistant to dogma are liberating.
Oh, and please reduce the energy needs of pattern-recognizing technologies, and keep them out of the hands of those who would use them to divide us. We need to know ourselves, and we need each other. Knowledge is power only if the power is in our own hands.
“Without meeting them, what might be inferred about a person known to exhibit autism, adhd inattentive type, aphantasia, and proprioception hyposensitivity?”
Understanding a person with these characteristics can provide insights into their behavior, preferences, and challenges. Here are some potential inferences:
These inferences can vary widely among individuals, as each person’s experience with these characteristics is unique. Understanding and empathy are crucial in supporting someone with this combination of traits.
My autistic traits are nothing to be afraid of. They are highly effective strategies in the environments for which they are adapted. If you spend time with me in these environments, a little of these traits may rub off on you, and your movement through these environments may be eased.
I have come to never doubt this.
I have also come to never doubt that people with autistic traits are not to be feared–whether we are nonverbal or highly talkative, highly energetic or profoundly still, highly organized or seemingly chaotic, hermetic or super social. If you recognize the environments for which we are adapted, and move through these environments with us, we often rub off on you in ways that make these environments easier for you to navigate.
We are connected to something, which sometimes makes us appear disconnected to you. If you connect with us, you connect to something, too.
We connect directly, which can sometimes seem off-putting, since we are not putting off connection or putting on appearances. Yes, we will likely rub off on you, but this rubbing off may actually make your way appear easier.
Please: recognize us. Recognize the environments for which we are adapted. Move through these environments with us. Let us rub off on you.
Despite appearances, it’s way easier than you think.
May all beings recognize their true nature.
Every day is neurodiversity awareness day.
We’re at a turning point: we are abandoning the need to evaluate the worth of a person by their ability to engage with capitalism, and adopting the wisdom to be inspired by those who, by their mere presence among us, increase our capacity to care.
Now that I am coming to understand my own neurodivergence, from the inside, (my punch card is getting full! It’s pretty clear I have autistic traits, in addition to ADHD, aphantasia, and proprioception hyposensitivity. Hurray!), I understand some of my differences as gifts. My inner blindness reroutes my visual processing through my language system–words are literally my way of visualizing. So whereas someone who visualizes might just enjoy the picture in their mind, I must make words, and I must share them for my inner world to become real. And although I do not have access to visual memory, I have a strong inner sense of space: I can feel inside myself places I’ve been, and tell you about the contents of those spaces–so if I point, and you can’t see what I’m pointing at, I’m pointing at something inside of myself, relative to my position in that space. I can smell these spaces, and tell you about those smells, and my reaction to them.
I share my language, from within the heart of my sensory and cognitive differences, exactly because people like RFKjr are spreading a dangerous lie: that autism is a disease, it is on the rise, and that it can be cured. And by association, because there is no magic data point that defines autism specifically and definitively (we are instead compiling lists of “tendencies” and comparing them lists of “norms”) people with other sensory and cognitive differences are in danger of being subjected to this cure as well.
Imagine: we could be living in a world free of Beethovens, free of VanGoghs, free of Newtons and Robin Williamses, free of Dogens and Temple Grandins and Einsteins, free of Soyen Shakus and Ryokans and Yayoi Kusamas, free of Greta Thunbergs and Hannah Gadsbys and Emily Dickinsons, free of Darwins and Joyces and Yeatses and Wittgensteins and Hans Christian Andersens and Susan Boyles and Blaise Pascals and Darryl Hannahs. Free of quirky-but-gifted people who connect directly with those they love, and are all around us, and always have been.
Humanity is not a collection of individuals: no individual ever did anything–we are a social species who has been so successful because we are so varied and so cooperative. People with sensory and cognitive differences are not diseased. In the vast, collective human body, we are specialists. Sometimes our specialties have us engaged in processing experience in ways that make us seem hard to understand and asocial, when in fact we are solving problems others are not even aware exist. Our affect appears flat because our nervous systems are wired for something else besides satisfying others’ need for affirmation through tone and facial expressions–we are wired to respond to a different set of impulses. We are the ones whose acute hearing warns the community of danger; we are the obsessives who figure out how to get nourishment out of a plant that is toxic until it is beaten and soaked and rinsed and soaked and mixed with ashes and soaked and rinsed and dried and cooked; we are the ones who create new language for the inner world of those who cannot speak, and in doing so make them human, acceptable, and hopefully valued in the community of humanity.
Hopefully you’ll connect with some of this language–it will remind you of something you already know. Hopefully you recognize that a world free of autistic traits would be a dismal place indeed. Hopefully some of this language will land with you, and hopefully you will spread it–it is open source and free to use, and it was created by observing you in action.
Thanks for listening. Having heard, warn the community of danger, in all of the ways you know how.
May all beings recognize their true nature.
Every day is neurodiversity awareness day.
TW: expletives
In my studies since diagnosis with ADHD, I have learned of my aphantasia and proprioception hyposensitivity. I have been participating in support groups with other ND people, and I have come to believe that I may be autistic as well.
So, I go online to take the Autism Spectrum Quotient test (created by researchers from the University of Cambridge) to see if I’m in the ballpark.
First question: I am [ ]male [ ]female
Fuck you guys. First question is a bad question. Right away, binary bias. Fuck that shit. That’s what got us where we are. These people don’t know anything. My child and two of their cousins are trans, and not everyone identifies as m or f. Fuck this test.
Second question: I prefer to do things with others rather than on my own. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
Fuck you guys. Was this test even written by a human? Do things? Who does things as a specific category? What the actual fuck are you talking about? Is square dancing doing a thing? Is pooping doing a thing? I definitely prefer to square dance with others. Fuck square dancing alone. I’ve tried it. It sucks. That being said, stay the fuck away from me when I poop. I hate pooping with others. When I was in jail I had to poop in front of 50 other people, many of whom were waiting to poop themselves. (That needed a comma. They weren’t waiting to poop themselves–they were actually trying to avoid pooping themselves: they were waiting to poop, themselves). You can shut your feelings down, but who wants to do that? Fuck public pooping. Fuck jail for making people poop in public. Fuck this test. What the actual fuck? Over.
Third question: I prefer to do things the same way over and over again. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
Here’s with the fucking “do things” again. Who the fuck thinks this way? What fucking things? Who decided “do things” was a thing? Oh, the things I would do to that person, the same way, over and over again. If something works, I will do it that way again. If something doesn’t work, I might try to do it the same way again, to see if it was the doing or the thing that was the issue. Did I make the perfect soft-boiled egg? Fuck yes, I will do it the same fucking way over and over again. The fuck? Did I fuck up in a social situation? You’d better believe I will not do that same thing over and over again. I will nope out before that fucking thing is allowed to happen again. Fuck these guys and their “do things”. Let’s see how you do things, fucker.
Fourth question: If I try to imagine something, I find it very easy to create a picture in my mind. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
Oh! Oh! This one’s easy. I have aphantasia. Definitely disagree! But you know what: if you would have asked me this question 6 months ago, I would have (subliminally) interpreted it as “can you describe something that is not in front of you this very moment,” and I would have answered, “definitely agree.” Because I have a plethora of words at my disposal, and languagey memories, I would be all over that shit. Because I have a paraphrasing mind, it would have made perfect sense to answer this way. So this seems like a kind of trap. Fuck traps on tests. Fuck whoever made this fucking test. Next fucking lame question.
Fifth question: I frequently get so strongly absorbed in one thing that I lose sight of other things. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
This is like asking, “do you poop?” Have you ever met a sports fan who gets absorbed in the game and forgets to take out the trash? Are all sports fans autistic? Now I want to cry. Because is there such a thing as a human that doesn’t listen to their favorite song and forget that the world exists? Fuck these fucking guys who made this fucking test and made me imagine a world where someone listens to their favorite song and doesn’t forget their problems for a moment. Fuck. You. Guys.
Fuck!
Question the sixth: I often notice small sounds when others do not. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
Ok. I’m a musician. It’s not fair to ask me this question. Thank you, next…
Question the seventh: I usually notice car number plates or similar strings of information. [ ] definitely agree [ ] slightly agree [ ] slightly disagree [ ] definitely disagree
When you were brought up with road trips and games where you had to spell a word using letters from license plates, this just seems like some kind of setup. What the actual fuck? We were trained as kids to parse fucking license plates, and to see the fun patterns that pop out. We were trained to respond to life, basically. What. The. Fuck. Are. We. Talking. About?
Seven questions in, and I am feeling nothing but white hot rage. Fuck whatever standard this test is supposed to be revealing. This is like Ouija Board level hocus pocus. Saturn return, mercury in retrograde, name starts with R-level ambiguous hocus pocus shit. Like someone whose basic assumptions have never been questioned-level bullshit. Like polo helmet as an everyday headwear category-level shit. Fuck! What the actual fuck!
Fuck. You. Guys.
People! What the fuck is going on? The person next to you senses the world differently from you because of the nervous system they were born with! Care for them, for fuck’s sake! What the fuck else do you need?
Fuck! We are fucked!
“Oh, come on Ryk, you’re being so persnickety with language again. Why don’t you just lighten up and hear what we mean, and not worry so much about how we say it?”
Why, thank you for being brave and vulnerable, and for speaking up when you feel the need arise. Here’s the thing: there are a lot, lot, lot of brave and vulnerable people who would speak up just like you did, if they had the language for it. Kids with autism. Neurodivergent kids. Trans kids. Immigrant kids. Kids with trauma. Grieving kids. All kids, really, but especially these kids. Kids whose experience on the inside doesn’t match the words they hear thrown around on the outside.
These kids cannot advocate for themselves, and often asking them to do so results in a painful cascade of expectations that can be paralyzing. Because they want to advocate for themselves. Believe me every part of their nervous system is doing its best to connect in nurturing ways.
If you’ve ever had the experience of “Yes!” upon hearing something expressed in a new way that aligns with your experience, you may be able to recognize the power of language to make one feel connected, in an instant. Like the whole world was waiting for this moment of connection of body, mind, and consciousness. A lot, lot, lot of these kids, our kids, have been waiting for a moment like this for their whole lives.
As we approach the end of Pride month, I recognize that I’ve been awash in a sea of colorful and descriptive language about identity from many angles, and I recognize that so little of it directly connects with my experience. Male is good enough, but only because I’m shy with my self-advocacy around gender. I don’t connect with enby or trans or agender inside, but you know who’s team I’ll be on in a bar fight. I just don’t want to take up all of the oxygen by claiming that space from someone who does feel that “yes” when they hear it.
And I know I’m not straight (damn straight), but bi, gay, queer, aromantic, pansexual (sorry if I left anyone out)–not quite feeling it on the inside, but definitely who I’m hanging with on the outside. And, not having that big “yes” experience when I hear them, I may seem like I’m not coming when I’m called to advocate or celebrate. It’s not because I don’t want to, but because I don’t always recognize myself.
And ‘othering’ is like that. A lot, lot, lot of people, not just kids, have a big loneliness inside, because as humanity is lining up for it’s various functions, they are not 100% sure about which line is theirs. Maybe they’d rather divide themselves up and be in all the lines. Because they want want want to connect, but the lines of connection are not always clear.
So, in being responsive with my language, I’m being brave and vulnerable, and advocating for that little kid inside who is experiencing life boiling and freezing and rumbling and flowing and ouching and aahhing inside, but hasn’t found the right words to express it. And is waiting waiting waiting waiting endlessly waiting for that moment of “yes.”
Happy Pride
Every day is neurodiversity awareness day.