Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.
It’s not your fault.
Some days I feel like I should get this tattooed on my forehead.
When I withdraw into myself and fall silent, it’s not because of anything you did.
When I blow up over some inconsequential thing you’ve said, know that the real trigger happened hours ago.
When you do something that unexpectedly makes me feel trapped or panicked, there was no way you could have known until I told you.
When I zone out in the middle of a conversation, it has nothing to do with how interesting the conversation is.
When I ignore you because I’m engrossed in writing or reading, it’s not a reflection on how I feel about our relationship.
When I twist out of your embrace or push your hand away, it doesn’t mean you’ve done something wrong.
When I forget to call you, it’s not because I’ve forgotten you.
When I don’t look at you during a conversation, it’s not because you’re boring me.
When you suggest doing something together and I say no, it doesn’t mean I don’t like you.
When I can’t explain my feelings or actions, it has nothing to do with how hard you’re trying to understand.
Because I didn’t mean to hurt you doesn’t mean it doesn’t hurt.
I say these things, but the sting of my actions isn’t lessened.
To bridge all the gaps would be a full time job.
Understanding helps, as does lowered expectations for everyone involved, but ultimately I know that I’ll keep running up against these unintended hurts that I see only in retrospect.
This is who I am, how I am.
It’s not you. It’s me?
I told myself I’d get back to blogging the Monday after I moved into my new apartment. I figured a week to recover from moving, ten days to get over the jet lag and fatigue from my trip–that sounded like more than enough recovery time.
Six days past my imagined deadline, I’m finally opening up a new doc. Six days of staring at a blank page in my head (because I refuse to stare at an actual blank page). Six days of idea fragments running amok, refusing to settle. Unchecked, that could go on indefinitely, so I’m gonna do what Gertrude Stein advised:
“The way to resume is to resume. It is the only way. To resume.”
Here I am. Resuming. Filling up the page with words.
I’d like to say this is going to be a post about something but mostly it’s just me looking for a way back in, decompressing.
My executive function has been on the fritz for weeks. Wonky EF makes it hard to write because it messes with my organization and regulation–two things that are pretty fundamental to producing coherent writing.
I’ll spare you the gory details. No one wants to read about a writer moaning about not writing, yes? Yes.
After much backspacing in search of a theme, I think what I need to do before I can begin writing again is to clear my cache. So in no particular order, some of what’s rattling around inside my head this past week:
Self-care is a necessity, not a luxury. I’ve been lenient with myself these past few weeks. In the past, I’d considered “going easy on myself” an indulgence. That was a mistake. It led to a lot of unnecessary emotional and mental angst, sometimes even to physical illness, much of which could have been avoided if I’d been paying more attention to what my body needed and giving less weight to how I thought things should be. This deserves its own post.
I’m getting better at being okay with things. There have been a lot of events recently that I’ve had little control over. I’m learning how to struggle less with that lack of control, how to just be with it and how that can be okay.
The Scientist and I have come a long way in one year. We’re both better at understanding my autistic nature, at knowing when to push and when to give way. He does a lot of seemingly-little-but-actually-big-for-me things. I couldn’t ask for a better partner in life.
When I don’t exercise for a stretch of time, I forget how exercise stabilizes my moods. It’s only when I get back into my routine that I remember how much better I feel on the days that I exercise in the morning.
Somehow, even when we’re undiagnosed, we recognize each other. For years I wondered why I always felt a particular kinship with my nephew who is physically and developmentally disabled. Now I know. We have something very fundamental in common.
I can be mindful, but it won’t always work. Sometimes my discomfort rises to a detectable level and sometimes I can only spot it in retrospect.
Mindfulness works when I’m being hit with a sensory 2×4: On the fourth day of our trip, we went on a family picnic. We’d been with people 24/7 for four days and when we arrived at the picnic site, I suddenly felt an intense wave of toomuchtoomuchtoomuch. Recognizing that I was getting overloaded, I told The Scientist I needed to go for a walk. We spent about an hour walking around the park, just the two of us, and when we returned to the family gathering, I felt ready to enjoy the rest of the day (and did). Disaster avoided!
Not so much when sensory ninjas attack : On the flip side, one day soon after moving, I experienced a series of minor discomforts. They accumulated slowly, stealthily, until at dinner I had what The Scientist later characterized as a kind of meltdown. It took both of us until the next day to sort out what had happened and why. In the interim, we both felt that icky sort of remorse that makes you wish life had an “undo” button.
I need to rediscover how to make myself vulnerable enough to write. Some parts of me have closed down over the past few weeks; I need to tease them back open again. The closing down is a defense mechanism, the emotional armor that allows me to get through challenging situations. It’s kind of like living with the rest of the world on mute. If I don’t intentionally shed that armor, I can get comfortable in it.
Change is hard but I’m getting better at it. Better self-care + being mindful + learning to be okay with things = less stress when things change. I still feel disoriented by change. I still perseverate on pros and cons, what’s good and bad, and better and worse. I still find change exhausting. But I’m learning to like it too, to lean into the adventure and newness and discovery and give myself over to the process without needing to know and control everything. Which isn’t the same as not needing to know or control anything. Not the same at all.
I’ve been thinking a lot about what comes next here. We have two more weeks of survey questions. After that, I’m not sure what happens on Tuesdays. I think I’ve covered most of the tests but I could be wrong.
There has been so much good stuff happening in the comments. A reader and frequent commenter has developed and released a cool “to do” list website for folks on the spectrum and others who need some extra help with executive function. Look for a detailed review in my next regular post.
It makes me so happy when someone asks for help or mentions in a comment that they’re struggling and other people leave them some encouraging words. Y’all are awesome.
Also, the developer of the RAADS-R read our comments on the Take-a-Test-Tuesday post and left some comments of her own. How cool is that?
I have lots and lots of ideas for posts. I’ve been thinking for a while now about doing a series on being self-employed/freelancing. Is that something anyone is interested in? It’s a topic I have a lot of knowledge about and one that I think is applicable for aspies because we tend to prefer doing things our own way, often alone. Yeah? No?
I’ve also been toying with a novel that I started writing years ago because I miss writing fiction. Not sure if that will impact my posting frequency. I need to find my writing rhythm again. At least I’ve finally stepped back out on the dance floor.
In Ten Things Every Child with Autism Wishes You Knew, Ellen Notbohm talks a great deal about the difference between “can’t” and “won’t.” Often for children on the spectrum, behaviors that appear defiant are actually a result of the child’s developmental deficits. It’s not that Johnny doesn’t want to clean up his toys and get ready for bed. He literally has no idea where to begin so he does nothing.
Understanding the difference between can’t and won’t feels huge to me as an adult. So much of what I struggled with as a child was treated by the adults in my life as a simple refusal to try. I was endlessly prodded to do things like have more friends and participate in class. While my parents and teachers seemed to think I just wasn’t trying hard enough–after all I was a smart, likeable little girl–to me it felt like I was making a superhuman effort.
Raising my hand to answer a question in school required overcoming all sorts of fears: the fear of being wrong, of being ignored, of being teased, of not being understood or heard, of being asked a follow-up question that I didn’t understand or couldn’t answer.
Like so much of what I struggled with as a kid, I’m not sure whether this was a case of can’t or won’t. There were certainly elements of can’t–particularly when it came to being able to express my thoughts clearly and respond spontaneously to follow-up questions. But there was a large measure of won’t born from the can’t.
If you fail enough times, it’s inevitable that trying becomes too costly.
As an adult, I don’t think there is anything I can’t do because of my Asperger’s. I’ve learned enough hacks and workarounds to navigate life on a daily basis.
Won’t is another story.
The older I get, the more resistant I’ve become to activities that are going to have a high emotional cost. There is a long list of things that I don’t want to do–that I won’t do–even if I can.
Notbohm defines can’t as a lack of knowledge, ability and opportunity. Won’t, she says, is about backing away from difficulty and challenge.
Middle age has become the season of won’t for me. I can go to every social event that my husband gets an invite to, but I won’t. I can seek out more opportunities to practice social skills, but I won’t. I can try to make friends, but I won’t.
The gulf between having the ability to do something and wanting to do it has widened as I’ve grown older. I no longer see as much value in toughing something out. I’m no longer as eager to grit my teeth and just get through an event. My desire to fit in lessens with every passing year.
I’m sure there are people who would tell me this is unhealthy and limiting. It may be, in the sense that I’m missing out on potentially enriching experiences. Perhaps at some point I’ll find some of those experiences attractive enough that I’ll want to give them a try. My won’t list isn’t set in stone.
But right now I’m at a point in my life where I’m not interested in enrichment so much as peace. There are days, a lot of days, when I’m content just to be left alone, to not have to deal with the confusing muddle of social interaction that is constantly scratching at the door to my mind.
As I grow older, I find myself becoming more and more okay with my list of won’ts. They no longer feel like the failures they once did.
In fact, it’s no longer a matter of everything coming down to the deficit-based can’t versus the failure-to-try-based won’t, as Notbohm frames the childhood paradigm. As autistic adults, we have the option to step beyond the deficit/failure-to-try model and simply decide that there are things we prefer not to do, just like everyone else.
This weekend I decided to buy new running shoes. Normally I go to a store like Kohl’s where I can just pull the boxes off the shelf and try on as many pairs as I want and stare at the choices for endless minutes without the distraction of a salesperson wanting to chat me up.
But I’m living in a new city–one without a Kohl’s nearby (yes, change is hard)–so off to the mall I went. After some bitching and moaning about not finding exactly what I wanted in the few stores I grudgingly walked through (it’s not like Kohl’s! everything’s different!), I discovered that Under Armour sells running shoes. I always wear Nikes but in the spirit of being less rigid, I decided to try something new.
The first pair of shoes I tried on weren’t right but I was determined to give this trying-something-new experiment a fair chance. I was studying the other choices when the salesdude came over to see if I wanted to try another pair.
salesdude: Did those not feel good?
me: They felt too stiff.
salesdude: What are you looking to do?
me: [slight pause while I try to process this apparent non sequitur then give up and go with the obvious] Buy shoes?
[nervous laughter: salesdude because he’s not sure if I’m joking, me because I know by his reaction that I’ve missed something obvious]
salesdude: I mean, like, are you going to use them for crosstraining, running–
me: Yes! Running! [and off I went on a dissertation about what I like in a running shoe]
The pause, the uncertain answer, the literal interpretation of an unexpected, off-script question–these are things that unmask me to strangers. One minute I’m the average customer and the next I’m the oddball who can’t answer a simple question and cares a little too much about how the soles of her running shoes are constructed.
But overall, in spite of the mall-induced crankiness, the shopping was a success because I got a new pair of these and I love them: