chronicle

neurodiversity journey: recognition

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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.

neurodiversity journey: autism spectrum

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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!

Waiting for yes

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“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.

💕

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As I recognize that my child has moved beyond the range of my radar, my only comfort is in knowing that the last thing I said to him was:

“I see you and recognize how your body and mind are working things out in their own way. I’m sorry for the unhelpful and unrealistic expectations that I put on you. You will try and fail according to your own particular set of circumstances, and you will always get another chance. I love you. You are perfect.”

It’s not a condition – it’s a predisposition

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Me: It’s not a condition – it’s a predisposition.

Friend: What is?

My particular nervous system processes my experience through language. I have experiences, and some part of me chews and chews and chews and digests and then out comes a word (this didn’t start as a scatological reference, but here we are).

Much of the language around neurodiversity is pathologized. We “have” ADHD, like we “have” the flu. It’s a condition, like rheumatoid arthritis.

I believe that differences in our sensory processing are just that: differences. Like moods. Or characteristics.

So, being someone who cannot imagine visual imagery, and who has limited fine motor coordination, and who experiences frequent emotional dysregulation (has big feelings), and who is hyperaware of certain sensory environments and hypoaware of others (that all describes me), and in connecting with other people who have similar-but-different experiences, I’m highly dissatisfied with a lot of the language that’s out there to describe the traits of people like (yet unlike) me.

It’s Pride month, and on this day, the Supreme Court of the United States voted to allow parents to disenroll their children from classes that include language around LGBTIA+ identity. This is, in effect, re-pathologizing a predisposition (a predisposition is a tendency, a particular personal expression style: so-and-so is predisposed to snarkiness; that dude is predisposed to making puns; this person is predisposed to process their grief through artmaking).

If we don’t have safe language to describe people-as-they-are-predisposed-to-be, then people not only get left out, but they get isolated, shamed, and ‘othered.’ So my ever-chewing brain is always trying to poop out new words to celebrate difference – the collective variation that makes us such a successful species in the first place.

So no, I don’t have a condition, I have a predisposition.

Remember, it was only in 1973 that homosexuality was removed from the Diagnostic and Statistical Manual of Mental Disorders, and only in 1987 that language around gender dysphoria was removed. So those are the dates that those predispositions were ‘officially depathologized.’ But those actions were not accompanied by a corresponding shift in the language around these predispositions, so they are still existing in the language as if they are ‘conditions,’ (subtly implying that they might eventually go away, like eczema). (Which also describes me, and which comes and goes).

The Supreme Court’s action today is akin to the Catholic Church making heresy of the discussion about heliocentrism in the 17th century. And as someone speaking from the future, I’m telling them: you are idiots who condemn your own people to eternal suffering with your stupid-ass amplification of old-ass outdated viewpoints. F**k y’all.

So yes, depathologize language around difference. Does that answer your question?

Thanks for coming to my TED talk.

🛒

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You see an old man in the parking lot, losing control of his cart, and you’re right there, and your hand instinctively reaches out and stops the cart from rolling, and you pause, just long enough to show safety with your body, and say:

“it’s fine,”

and move on.

And then, a second later, you are standing across from a young woman screaming at her wailing child:

“chill tf out!”

And your body is frozen, except for the heart that pumps as if it is trying to put out a fire. Which it is.

And as you bear witness, you wish that it was this cart your hand could instinctively reach out and stop from rolling.

super weird arbitrary common sense neighborhoods

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I post a lot about politics on Facebook and my personal blog, and I have many strong and specific opinions. I also have joined many special interest groups on social media. It would never even occur to me to share my political opinions in these special interest groups, but I understand why some might.

I’m also neurodivergent, and I post a lot about that. Again, if I wanted to start a hyperlocal neurodivergence group, I feel empowered to do so, and wouldn’t consider posting in my local community group (though I might introduce myself there and invite folks to join my group if they like).

As a neurodivergent person, I have a lot of practice stepping on various boundaries that I did not understand intuitively. And, I understand a wide range of reactions to being reminded of a boundary.

Boundaries are social constructs, like gender and sexual preference. They may seem simple and obvious to some, but for others, it’s complicated, and the lines are not bold and defined. Social groups have a lot of unspoken codes that most people follow without necessarily even recognizing them until one of them is violated. When that happens, sometimes the group responds by adjusting the code to include the new behavior (again, often without even recognizing that it’s happening). Sometimes the group responds in a defensive way to reinforce the code.

People have a wide range of responses to being made aware of or reminded of a code. For some, they actually find it helpful, and they are able to contextualize the reminder as a frame for understanding the group’s character. For others, boundary reminders are always to be pushed back against, because boundaries are the enemy of freedom and a means of exclusion (which sometimes is actually the case).

As part of my particular neurodivergence, I experience something called Rejection Sensitivity Dysphoria (RSD). Because I understand this, I can be accountable for my feelings when it arises. But before I understood it, I experienced a lot of defensiveness when I was reminded that I had crossed some boundary I hadn’t intuitively been aware of. Hearing the reminder, I would feel rejected, isolated, and judged from without, and ashamed, embarrassed, and frustrated from within, knowing that my intentions were good, but now feeling like I will never be seen and have my needs met by the community. And all of this can happen in a fraction of a second.

Until I learned to understand this phenomenon, I would often either become defensive, or just disappear so that I didn’t have to feel like my presence was a reminder of my shameful act. It’s a rough spiral if you don’t understand it.

Having unraveled this to a certain extent, I can feel and understand how people can experience a boundary reminder as a personal rebuke. It sucks to feel that way. It also sucks for the person exercising the boundary to receive the kind of response that a person who feels shamed can give.

Because nobody asked, here are some unsolicited helpful tips for people on both sides of this type of online boundary issue.

For the person reminding someone that their behavior/language/tone/content has overstepped a boundary:

  • Remember that the person may not be aware of the boundary in the first place. Although to many, coloring within the lines seems obvious and uncontroversial, these social constructs are not clear to everyone. Always lead with love. Is the person violating the boundary out of clear defiance and disregard, or are they expressing a valid sentiment in a forum that is not habituated to accepting and including that sentiment? Don’t take the codes for granted and assume the worst. If a person walks into your flower shop looking for disinfectant, don’t right away make them feel stupid for having come to the wrong place. Let them know that you understand what they are looking for, and that it is available right across the street. Be willing to walk them there.

  • If a person is expressing fear, isolation, or rejection, try to remember what these feel like, even if you don’t agree with the way the person is expressing them. When a person is in that place of fear, it can be very hard to hear that they have also done something wrong. So try to let the person know that you hear them, see them, accept their feelings (because they can’t just turn them off to fit into the group’s code), and gently try to redirect them as in the example above.

  • Remember that boundaries are social constructs–a set of unspoken assumptions about the nature of reality that not everyone holds or conforms to or is even aware of. Telling someone they have crossed a boundary can be received as if you were telling them that they don’t conform to the gender presentation that you expect of them, or that the sexual preference they are expressing is shameful or inappropriate. Social constructs are super weird: obvious to some, and completely a mystery to others. Realizing this, we can avoid pitfalls by examining our own assumptions, listening deeply to what’s being expressed, and understanding what is needed in the situation for everyone to feel safe and heard. Because we all deserve to feel safe and heard.

For folks feeling rejected, isolated, or defensive for having been reminded that their behavior/language/content crossed a boundary:

  • Try to understand that the person enforcing the boundary or code may not even be aware that that’s what they are doing, because to them, they are just exercising common sense, that they believe everyone understands, except for people who are uneducated or who are willfully violating the boundaries. They think they are doing the right thing and you’re doing the wrong thing (notice that I said may, because not everyone is coming from this place). They may not have experience with including different views relative to the code. But understand that they are basically responding to your idea, and not your person (unless they are making it personal, in which case, it’s not going to be easy to educate them, so maybe disengage for a moment, because they’re lost too).

  • Try to be aware of the way shops are arranged in a town–there’s the flower shop, the candy shop, the drug store, the grocery store, the record shop (I’m old). While there is some overlap, each shop has a vibe and a range of products. If you keep asking for disinfectant in the flower shop, the shop owner is likely to become frustrated, and perhaps enraged. Know that if they are expressing that they don’t have disinfectant, that’s not about you. It’s just the limitation of their shop. Social media does have a town square: it’s the main platform, outside of the groups. The groups are like specialty shops, so that people entering those shops can have their expectations met. They are not necessarily trying to exclude people, they are just trying to limit the expectations to focus on a particular product. For some of us, this seems super weird, because all of the boundaries seem arbitrary, and we feel like we’re not being met where we are. But try to understand that the boundary they are showing you expresses their limitation, and not yours.

  • If you are finding that your language/behavior/content is causing people to react negatively, again, try to step back for a moment and not take it personally (super hard, I know). Consider whether there is another forum that might be more accepting of your expression, and more willing to meet your needs. If you are not aware of a place, and your desire is to post on social media, know that you are empowered to create forums like the one you are posting in that can meet your needs. For example, if you are wawnting to connect with folks around the issue of neighborhood safety, you can start a group specifically for that purpose, and then invite folks from the first group to join you. I have done this, so I am speaking from experience, and it can be a game-changer in terms or feeling heard and appreciated. You have options. Even though it feels like a fight-or-flight situation, you have options, and you can create the kind of community you envision–it just takes some extra work. But people may end up being grateful for that extra work, and that’s a win for everyone.

Lead with love. Listen deeply. Don’t take it personally, but respond personably. Kindly redirect. Read the room and feel empowered if the room doesn’t hear you–make a new room.

Be safe out there! We really do need each other.