an interesting consequence of being both autistic and adhd is the push-pull, fast-slow, act-ruminate, interplay between these two processing styles, that beget strong long-arc themes: pattern-recognition, justice sensitivity, rejection-sensitive dysphoria; and also tolerance for ambiguity, conflict resolution, and a need to articulate the awkward unspoken paradox.
looked at as a snapshot, i can appear to be by turns reactionary, quick to judge, and disruptive; or emotionally flat, ruminative, or disengaged. It is this paradoxical dynamic that causes me to crave nuance, and reject binary paradigms; to love deeply and also feel hurt easily; to rejoice in a graceful solution, but also to be the first to point out the inconsistencies in that solution.
i make a lot of mistakes and missteps, but i process the consequences of those mistakes in granular detail, sometimes for decades. i will find myself advocating vociferously for an idea which i may have previously rejected; or stopped in my tracks, hearing a word, and becoming lost in contemplation of the moment that that word was formed in the mouth of the person who hadn’t heard it before, but deeply needed to articulate something that had not before been articulated.
i have a strong desire to connect with people directly and deeply; and yet, even after a moment of deep connection, that connection will not translate into immediate trust, which i only experience through myriad moments of connection over time, if at all.
what’s fascinating to me now is that the language for a person like me–autistic and adhd–are quite new constructions for qualities that have always been part of the human experience. they come to us from the mouths of scientists, who, to their credit, look at things for a long time and talk about them; but to their detriment, these terms arose as descriptions of difference relative to a norm, rather than as healthy human characteristics. this paradox is just information to be articulated and, hopefully, digested in the great body of human understanding.
love your neighbor, kill your idol, consider the consequences, and have a nicely nuanced day.
As someone who has worked with children and their parents for 25 years, I would say that I have had more than my fair share of positive human interaction. I know there are many people who love me, and I know that I am a good person and that I am lovable.
(In Christian summer camp in Oregon in the 70s, we even made pendants out of slices of wood and gimp {plastic lanyard cord}, in decoupage, no less, {we used shellac}, with the letters IALAC: I Am Lovable And Capable. Why am I sobbing right now? Those letters never did sink in, really. But I always loved camp, and always cried on the last day.)
(don’t worry, that’s not code. i’m just having a moment)
That being said, I have to work to remember all of this positive human connection, and sometimes I feel utterly invisible. Today, for example, when crossing the street on a green light, a car with tinted windows (I couldn’t see the driver at all to make eye contact) turned left when I was well into the intersection. I put my arm up (I’m not a small person) and had to take 4 full steps backwards, fast, (I don’t do fast), and I could feel the draft from the car that missed me by an inch, and slowed down not at all. It was like I didn’t exist.
Or at the store this evening, standing literally in the middle of the entrance waiting to put my cart away, and people moved around me as if I was not there. And when I did sense an opening and moved forward the slightest bit, someone surged by me and glared as if I had tried to ram them. I had moved about an inch at that point. I then waited even longer until there was a moment to act. Moving with care (and with dyspraxic, intentional motor planning) or any hint of hesitation was not an option.
Somehow these moments of invisibility effect me more deeply than when people are outright rude or hostile. Somehow, hostility makes more sense to my nervous system than not being seen. Living, as I do, in a big giant man disguise, I’ve become familiar with the ways that it makes sense for some people to show hostility. I try not to take it personally. But I seem so obvious, at least to my self. I can’t be invisible in the times when I want to be, so when I am, it’s unsettling.
(Sorry, I’m just falling apart, here, remembering when I was about 7 years old, and I called my Uncle Keith on the phone, and I had never heard an answering machine before, and when I heard his voice on the line I kept trying to get his attention: “But Uncle Keith! It’s me! Ricky!” My auntie and my Naná tried to explain it to me, but I was inconsolable for a while, kind of like now)
(Some of us don’t grow out of it)
Then there are the times (this hasn’t happened during the holidays, when it would make sense), when I run into someone I haven’t seen for a while, and we have a nice conversation, and they say “let’s get a coffee sometime,” and then I’ll follow through in a light way so as not to trigger obligation: “great to see you. I’ve got some time next week if you’re free, otherwise, let me know a good time for you,” and then I never hear from them. This actually happens fairly often. Sometimes I even summon the courage to try again months later, and crickets.
I do my best not to take it personally, because I know everyone is time-poor and every interaction creates an obligation and an offset that must be recouped at some other time in the week. It’s like running into a friend in the car next to you on the freeway, but their lane is moving faster than yours. And then you text them the next day: “so cool to see you!” and get no response (true story).
Ghosting, or non-response, has become normalized. For someone whose nervous system is wired for connection, and who builds his schedule around being available, I have never felt more invisible. It’s like we’re living in a post-relational world.
(It’s like I was wired for a particular purpose, that appears to be no longer purposeful)
I know I am extra sensitive, because of my particular nervous system. I also know that there are many people with nervous systems like mine who have not been blessed with all of the warmth and positive interactions that I have been so privileged to experience who are having a hard time these days.
(or maybe I actually am neither lovable nor capable, which would be a simple explanation for the whole shebang, so there’s that)
All of this just a long-winded way to say be kind to one another, and I hope you have the wiggle room to text back the friend you see in the car next to you on the freeway.
as an autistic person, who is highly competent in certain environments, and near disabled in others, I’ve found that I can do things that are normally quite difficult for me if they are related to my field of interest–parsing seemingly arbitrary lists of conditions to fill out necessary forms, for example. I’m doing this a lot lately, in setting up services that would supposedly allow me to better be of service.
But lately, I seem to have hit a wall. 5 different services that I’ve tried to sign up with have denied access, with cryptic and seemingly arbitrary error messages, and no path to a human to rectify the problem, and no response from the non-human contact form provided. for someone like me, sometimes just having another human to walk through the steps with makes all the difference between failure, disconnection, and simple connection.
I’m not generally a conspiracy theorist, but I must admit that the thought has occurred to me, “maybe these connections are failing because I am on an arbitrary list called the autism registry.” conspiracy theorism is the result of a certain kind of isolation. someone like me, who thrives on connection, and who is competent in environments based on nurturing human connection, but who withers in isolation, these missed connections feel highly personal. it’s easy to see how the short hop to the rabbit hole could be an obvious choice for some. the fact that an autism registry has been mentioned on the national stage makes that hop feel more like a logical step.
especially when finding a simple hand to hold is so expensive.
take care of each other. volunteer to sit with a friend while they fill out a form. ask a friend for help if you need it. what if a livable world depends on such a small gesture?
It’s been very emotional for me to reemerge from the darkness of lockdown to return to building community through music-making. In my conversations with folks, it becomes clear that a younger generation of families don’t know about some of the ways we connected before, and don’t necessarily remember many of the ways things were different then.
In going through my instrument collection to decide what to bring to my family music classes, I brought out the box that contained the EBCMP banner. For those who don’t know, EBCMP was the East Bay Community Music Project, the organization I founded in 2012 to cultivate community music-making opportunities for people of all ages, ethnicities, faiths, economic access, neurotypes, and abilities, and any other way one might sort people into categories. I now continue that work as imeetswe, for reasons I won’t cover here. But I believe at this point in history, part of my job as a facilitator and advocate is to remind people of what once was, and what is possible again, and this banner is a powerful reminder for me.
We used to meet on second and fourth Sundays, and at this particular time we were meeting in the multi-purpose room at Malcom X Elementary in Berkeley. My mother would often drive over from the Peninsula where she lives, and join us. She was usually the oldest person in attendance, just because not so many older folks would join us often, but she did. Our second gathering in August of 2014 coincided with my mother’s 70th birthday, so we planned a ceremony to honor her entry into the crone realm (which, whatever your association with the word might be, is an honor and a privilege, and an important place in the community).
We got together in the morning, and ate potluck breakfast. We had asked folks to bring pieces of colored fabric that could be torn or cut into strips, and some of us had taken some time in the morning to cut the many colors and textures of fabrics into strips. We sang some songs together as usual. Then, we had my mother sit in a chair in the middle of the space. As my mother sat in the middle, on her chair, each family in attendance, in turn, approached her (her name is Susan, or Grandma Sue), and gave her a kind reflection, and handed her a piece of the torn fabric. She had been instructed to tie the strips together as she was handed them. I don’t remember exactly how many families were in attendance, but there were enough that when each family had shared their kind reflections, she had a long, long rope of tied together fabric strips.
Then, as she held one end of the fabric, all the rest of us sang Que Sera Sera, a song that my mother loved (it was originally sung by Doris Day, and my mother was about 12 when it was on the radio, in a time when we were all connected by the songs that came over the radio).
My mother stood. We all sang, and wound the fabric around my mother, until she was all wrapped up in the kind reflections that folks had given her. And then, we unwound her, still singing, and then she walked around the families gathered and wound the fabric around the community, and it was long enough to encircle us a couple of times.
I wonder how many people remember that crone ceremony for my mom, or any crone ceremony for anyone’s mom, for that matter. She still remembers it, I’m sure, and I do too. For some, becoming a crone, or welcoming one into the community, is an important rite of passage–a recognition of having lived life fully, and of having a certain kind of wisdom that only comes from living a long time, and the importance of that wisdom to the community.
And what, then, was done with the fabric? Was it discarded? If you know my mom, you are fairly certain it wasn’t discarded. No, my mom proceeded, over the course of several months, (when she was also consumed with the many sewing and knitting and crocheting projects that she’s always consumed with) she turned the fabric strips into a quilted banner to represent the community. We used to carry it in front of us in our annual Spring Parade (you participate in an annual Spring Parade, don’t you? Doesn’t everybody?), and it was draped over the donation/announcement/signup table at our Sunday gatherings.
So as I uncovered the box that contained this emblem of a certain moment in a certain community of people who had chosen to gather because they loved to sing and move in community and recognize the cycles of the seasons and the ways people change, I admit, I cried. I had a moment. And because of how my particular brain is wired, it just made sense to share this moment with the community of people I find myself within now, who may or may not understand what I’m sharing, or what I think is important about a moment like this. I think about all of the moms in my community, and of all of the moms who might have moms that are moving toward the crone realm of their lives, and I wonder if they would appreciate being recognized in ways like I’ve described.
A crone represents a certain type of neurodiversity, and this community is organized to recognize the value of all of the different ways our brains are organized or disorganized, or differently organized. It used to be that to be old was a certain type of neurodivergence, because it was rare for people to live past a certain age. To be older is not so rare any more, but still worthy of being recognized for the value of simply having lived through many cycles of seasons, and styles of communication, and changes in hormone balance, and attitudes toward difference.
I share because I see something of value that I’m not sure the people around me see, and it’s just my brain’s wiring that makes me think that’s what I’m supposed to do.
In a neurodiverse community, all are welcome, all are recognized as having a unique perspective, and something of value to offer to the community. And we can, if we pay attention, and if we show up, recognize uniqueness within a community as having value, especially in a time where sameness is centered and strived for.
Thanks for listening. Thanks for showing up. Thanks for recognizing the value in the many ways of being a human being in the community we find ourselves in.
