I’ve already talked once about my amazing cat, Rye. The one who is deeply anxious but through the power of accepting her as she is and her own tenacity and bravery has achieved more than I ever thought she would. I am so very proud of her.
I am also anxious. I’ve had pretty deep anxiety for as long as I can remember. I am medicated for it now and really doing much better, but nothing can make it go away completely. I get anxious sometimes. Sometimes it’s social anxiety, sometimes it’s anxiety about trying a new thing, sometimes my heart just pounds and my breathing is fast and I’m shaking for no apparent reason at all – it’s just aimless, pointless anxiety about nothing. That last one is kind of annoying, honestly.
I’ve also been very frustrated with myself about my own anxiety. When I was growing up it was often treated with impatience or dismissal or anger, so I learned to be ashamed of it. My being fearful was being “bad” and when I hid my fear I was praised for being “good.” I have a few specific examples I kind of want to trot out, but I don’t want to be excessively depressing and I’m not actually looking to really talk about my childhood right now. Suffice it to say – I learned that being scared was “bad” which translated into seeing MYSELF as “bad” because I was so afraid and I wasn’t able to stop being afraid.
Enter Rye. While her foster mom* is lovely, potential adopters don’t want her because they see how scared she is and don’t want to deal with that. As though her fear is something to “deal with” or is a “hardship” in some way. Well, as I said in that previous post about Rye, I don’t consider her anxiety to be a hardship on me at all. And being a person with much anxiety myself, I know how to treat an anxious cat.
Over time, I started to notice something. The way I treated Rye and her fear was very different from how I treated myself and my fear. I never placed any demands on Rye, but I would make demands on myself that regularly ended in panic attacks or other unpleasantness. I had absolute trust in Rye to set her own pace, but no such trust for myself. I am always incredibly proud of Rye and every accomplishment she makes, but every step forward I take is accompanied by an internal litany of how I still fall short.
Now, I am one of those people who always has stricter standards for myself than for other people. I suspect many of us are like that. It’s not actually something I think a whole lot about, but eventually the double standard on how I responded to myself vs. how I responded to Rye was just too much to ignore.
I had a few ways available to me to resolve the cognitive dissonance. I could decide that I need to be harder on Rye. I could decide that we just need to have two different standards because Reasons. Or I could decide that I should be gentler with myself.
It probably goes without saying that the first option was no option at all. Not. Happening.
Option two was tempting, but I couldn’t quite manage to create justifications that satisfied me. I really tried, though.
Which left option three. Honestly? It’s kind of working. I really have gotten so much more gentle with myself and my anxiety. Maybe it isn’t bad of me to be afraid, maybe it’s not a moral failing on my part, maybe I’m not actually weak. I see Rye as phenomenally brave, the bravest cat I’ve ever known, because of her willingness to do things in spite of her fear. Maybe, just maybe, my accomplishments are worth praising without also belittling myself. Maybe, just maybe, I’m brave too. Maybe, JUST MAYBE, I can be proud of myself.
Ok, I haven’t actually made it that far. I’m not proud of myself yet. But I am far gentler with myself, and less inclined to judge myself harshly for feelings I can’t control. I’m better at being, if not proud, at least happy with myself when I do things that are hard for me.
And you know what? This works SO MUCH BETTER. Turns out getting angry with myself for being fearful didn’t actually accomplish very much. Rye taught me a lot about the power of accepting others for who they are. Now she’s teaching me about the power of accepting myself.
* If you’re wondering why her foster mom didn’t just adopt her if she was having so much trouble finding a home, well, I wondered that too. Apparently Foster Mom thought her home was too loud and chaotic for Rye to flourish in, and wanted to find a calmer, quieter home to be Rye’s forever home.
I’ve been really struggling for the past few weeks to get my brain in the zone for writing. There’s actually a pretty simple reason why – I’m getting surgery soon! And I’ve been REALLY preoccupied with All The Things that happen in the weeks preceding surgery. Sooo… I decided I would just talk about that. Want to get to know me better? Or possibly learn about what’s involved in getting a hysterectomy? Then read on.
Content Warning for medical talk.
Right. So I’m getting a hysterectomy – which is to say, I’m having my uterus removed. YEETERUS. In my case, it’s a trans thing. I’m a trans man, having a uterus causes me distress, so I’m getting it taken out. I kind of wish I could give it to someone who wants a functioning uterus, but as far as I know that’s not a thing yet. Also, while I never had it confirmed, multiple medical providers have considered it possible/likely that I have endometriosis, so my uterus might not be desirable anyway.
This has involved a lot of doctor visits. Step one was choosing a place to go through to get my surgery. At the time I did not have a PCP, so I was pretty much on my own to decide. Once I did that, step two was making an initial appointment. This was basically a consultation where we discussed my options including types of surgery available to me (laparoscopic vs. robotic), exactly how much I wanted removed (all of it, but some cis women who need hysterectomies keep their ovaries for hormonal reasons), what sorts of things I could expect, and the next steps to take towards surgery.
Next step was… basically a second consultation, this time with the surgeon who will be performing the surgery. And as I talked about in a previous post, this is where I really started to be conflicted about whether or not to disclose that I’m autistic. I genuinely get confused and a bit lost with this mix of straightforward and roundabout communication in healthcare settings, and I could tell I was missing cues and not responding the way an allistic person would.
Anyway, that appointment got far more specific, I had more question, there were things the surgeon wanted to know and… well…
TRIGGER WARNING I’m gonna talk about a pap smear and briefly mention sexual trauma. I do not go into detail on either one.
Apparently before getting a hysterectomy surgeons REALLY want to get a pap smear first, just so they have more information on what’s going on with those parts. This is a procedure that I find EXTREMELY distressing. It’s physically painful, induces a great deal of dysphoria, and I tend to get PTSD symptoms for at least a week afterwards with vivid and invasive memories of sexual trauma refusing to leave me alone. Technically there was a way to do it with me under anesthesia, but it would mean being put under twice, once for the smear and then AGAIN for the surgery, which isn’t a great option for several reasons. And they didn’t have the capacity to just sedate me, which also would have helped.
In any case, I consented to the pap smear, and it was painful and dysphoric and I basically had flashbacks for a week after, and I dissociated so badly I basically couldn’t walk when it was done. After, the surgeon asked me if I wanted water and all my brain came up with was ERROR. ERROR. ERROR. Point being, I was in a bad place. This part of things was HARD.
Ok, done with that part. You can pick up reading here if you needed to skip it.
Another lovely (/s, it isn’t lovely at all) thing I have going on is a hypertonic pelvic floor. This basically means that my pelvic floor muscles are too tight all the time and don’t know how to relax. I need physical therapy (PT). So my surgeon wanted me to get an initial assessment just to make sure my pelvic floor issues won’t interfere with healing.
That turned into yet another situation in which I wasn’t sure whether or not to disclose that I’m autistic, and the physical therapist was yet another person who mixed direct communication with indirect communication. My therapist (mental health, in this case) has suggested that if I’m uncertain about disclosing that I’m autistic but also struggling with understanding everything, I could just start out by directly asking for all communication to be extremely direct – to the point that it might feel rude to them – and just blame it on anxiety or something.
It’s not a bad idea, but I haven’t tried it yet. And one thing I have found is that people will readily agree to being direct, and even totally believe they’re being direct, while in fact continuing to be totally indirect. It’s just such a THING, and it can be so incredibly tiresome to navigate.
ANYWAY. I digress. The PT appointment went fine and nothing happened that caused significant dysphoria or any dissociation. (ok, I did briefly dissociate once while we were talking and was extremely disoriented when I “came back.” The physical therapist probably noticed that I suddenly looked a little confused, but I think she took it as not quite understanding the last thing she said. I did some grounding exercises to stay more present after that. No idea why it happened) The pelvic floor is a very intimate area, but to my benefit I know someone who knows someone who is explicitly open about treating pelvic floor issues in trans patients, so I jumped on that in a heartbeat. The exam was external, I only had to partially disrobe, and while I did get a little stressed, it really wasn’t that bad at all.
She also confirmed to me that I am doing this in the best order – hysterectomy first, then PT. Apparently she and her colleagues have anecdotally found (no studies on this as of yet) that a hysterectomy can itself greatly alleviate the symptoms of a hypertonic pelvic floor. It’s not a cure, but it helps, which means hopefully less PT will be needed once I’m ready to do that.
I have also spoken on the phone with my HRT provider, as there is a high chance my dose will need to be adjusted after I no longer have ovaries. So we have a post-surgery plan in place to track my T levels and see what needs to be fiddled with. Sadly, this is exactly the kind of thing that can’t really be predicted – it’s going to be blood tests and gradual adjustments, much like it was when I first started T.
Next up is an appointment that’s basically dedicated to signing consent forms and making sure I’m squared away, and then finally it’s the surgery itself.
Roughly around the time of the second consultation when I was getting things going for real, I had a bit over a week of a flurry of phone calls and emails and appointment making and getting my schedule arranged. I struggle to talk on the phone as the sound quality on phone calls is so low that I have to really focus hard to understand what the person is saying. This means that ALL of my processing power is focused on understanding what the person is saying and there is pretty much nothing left over for the conversation itself. I deal with this by anticipating as much as possible of what will be spoken about and what I will be asked, and then writing it all down so I can just reference my “phone call” notes. I mean, I even write down my phone number for every single phone call where I’m likely to be asked for my number.
And that’s what I’ve been doing! I’ve been a little bit too overwhelmed to actually feel excited about it, but the “overwhelmed” feeling is gradually decreasing, making more room for excitement. I’ll admit, though – I’m pretty proud of myself for how much I’ve done. I am apparently VERY motivated here.
Anyway, that’s what the process has been like for a trans man in the US. Thank you for reading. If you have any questions go ahead and ask. I’m feeling pretty open about all this.
ADDENDUM: I wrote this post yesterday. Today I got a package in the mail from my surgeon’s office with sterilizing wipes and instructions on how to use them before surgery. I believe I got the same basic thing before top surgery. So sterilizing my torso as much as I can is part of things as well.
I’ve been thinking a lot lately about accessing healthcare while autistic, particularly while less-visibly autistic (since that’s me). Some in more general terms, but also in very concrete, this-is-relevant-to-my-life-right-now terms.
See, I’m planning on having a medical procedure done (it doesn’t really matter what it is, and no, I’m not sick), which is involving a number of consultation appointments and appointments for paperwork, appointments for scans – all sorts of things.
I have not told them that I am autistic, and I don’t know if I should.
As it is, I am masking really hard during appointments and doing my very best to look and act in a way that people would see as “normal” while simultaneously gathering information, asking my questions, and generally just being mentally present for my appointments. This is an enormous amount of work and consistently leaves me completely exhausted by the end.
Of course, that on it’s own wouldn’t be enough for me to consider it a particular problem, but the fact that my mask is hitting limits and sometimes I’m having noticeable processing lag or not responding the way I realize later I’m supposed to IS enough for it to be a problem.
Communication with doctors has been an incredibly confusing blend of direct information and them (I assume) trying to be polite – except a large part of “politeness” is actually just being indirect. Then I take longer to respond, or I ask a clarifying question and the doctor gives me a funny look because from their perspective, they literally just told me what I’m asking about. The processing lag gets worse, I start to get flustered, it’s overall awkward.
So yeah, I think about letting them know I’m autistic so that maybe they’ll understand why communication goes a little funny sometimes.
Buuuuut… I worry.
I don’t actually know how they’ll respond. I’m sure that from their perspective, they will be supportive and understanding. But sometimes all that adds up to is immediately, drastically lowering their estimation of my intelligence or my ability to make choices about my own body. I don’t know what kind of latent assumptions they have about autistic people that will negatively impact our interactions if I make it known that I am autistic.
I mean, I once casually mentioned that I’m autistic to a person on a train, and he immediately asked me where my Carer is. I don’t have a carer. I was taking the train by myself. There are assumptions everywhere. Since they are assumptions, the people who carry them are generally extremely comfortable forcefully shoving their assumptions onto me. It’s one thing to explain how my autism works to a random stranger I’m never going to see again. It’s another thing entirely to explain it to a doctor who is going to be Doing Things to my body.
Most of my posts to my blog are because I have Something to Say about a particular topic, but this time it’s because I’m genuinely lost. Is it better to share or not? I really have no idea. I wish I did.
Ok, so I THINK I found this list of #ActuallyAutistic questions around 4-5 years ago on tumblr, but I seriously do not remember any more details of where I found it or who may have created it. I am really at a loss here. In any case, I thought it might make a decent way to ooze back into this blogging thing, and if any of the questions really strike me I can always note them down to make a proper post about them some other time. If anyone knows where they came from or who wrote them, PLEASE let me know so I can properly cite them.
EDITED TO ADD: Actually Autistic Blogs List found this source for the questions. Still unknown if it’s the original source, but it’s from a similar time period to when I probably found them.
Anyway, let’s go. A bunch of questions about how I experience my autism. Woo!
1: Did you discover that you are autistic early or later in life? How do you think it affected you?
So at the time of writing this I am 39 and rapidly heading towards 40, just to give my answer some context. I got my first inkling that I might be on the autism spectrum when I was 18. I was officially diagnosed when I was 30. I spend the 12 years in-between pondering, wondering, thinking, analyzing, and having random people occasionally say “do you think you might have aspergers?” to me. I think it affected me in MANY ways, which I know I’ve written about in the past but might be worth writing about more. In brief, I was spared ABA but also no one knew what was wrong with me and it was basically all chalked up to personal failings on my part.
2: Which terms and words do you prefer when talking about autism?
I am so very identity-first. English puts adjectives before nouns, so “autistic person” just makes linguistic sense.
3: Do you advocate for yourself and other autistic people?
Well, I used to have a blog I posted to weekly that I’m trying to get going again in some form. That’s about it, honestly. I mean, I guess I advocate for myself in my personal life (see: getting diagnosed as an adult, being trans, transitioning, etc) but that’s about it.
4: How did you find out about autism?
Honestly, I don’t remember. I think I first heard of it somewhere in the vicinity of 2000, pretty close to the same time the first person asked me if I might “have Aspergers.”
5: Do you have any autistic family members or autistic friends in real life?
Family members – not that I know of that are officially diagnosed, but it would not surprise me if certain family members were on the spectrum. Friends – yes.
6: What, in your opinion, is your best autism-related quality?
My capacity to see and focus on details.
7: Which autistic trait gives you the most problems?
8: If you could get rid of one and only one autistic trait, would you do it and which would you choose?
9: Any autistic traits that you don’t have but wish you had?
I’m honestly not sure. The past few questions have already been difficult because I’m not used to breaking down being autistic for myself into specific traits. That said, it’s something I’ve done in the past so I had something to draw on. This one, though… I really don’t know.
10: What do you think about support labels as an alternative to functioning labels?
Ok, so I definitely am against functioning labels. I could go on a rant about “what IS functioning, really?” but I’m pretty confident I know the answer at this point: “functioning” is simply a measure of how well a person passes for NT. This might be worth elaborating on in the future, but yeah. People who look at me see someone who is high functioning because I pass for NT in brief interactions, but I can’t hold down a job, conversation is ridiculously complicated, group interactions with as few as three total people feel hopelessly complicated, I get overloaded in public spaces ridiculously easily, I could go on.
ANYWAY. Support labels certainly do better at identifying something more concrete and practical than this idea of “functioning” but I worry about them also being used to separate autistic people into “respectable” or “not respectable” categories. I suppose that’s true for any label like that, though.
11: What, in your opinion, is the most ridiculous social protocol rule?
Ooh, this reminds me – I want to write a post about why small talk is actually useful and functional (oh no. now you can see that I don’t post in the same order that I write. In any case, I made that small talk post). I generally take the view that all social protocols are useful in some way, and my lack of understanding doesn’t say anything about the protocol itself. I know this sounds like I’m feeding into the deficit model of autism, so I want to be clear – I truly, sincerely wish that this was a stance that everyone took about just about everything. I am VERY TIRED of people using their lack of understanding something as a reason to state that the thing they don’t understand is wrong or bad. Like, you don’t have to understand why or how I’m trans or transness in general in order to accept that I am.
12: What are your hypo- and hyper-sensitivities?
I’m hypersensitive to sounds and food textures. And clothing tags. And clothing texture. And smells.
My sense of proprioception (the ability to tell where my body is in space) and my interoception (the sense of the internal state of my body – for instance, am I thirsty? Do I need to pee? etc) are definitely impaired.
13: What is/are your current special interest(s)?
Crafting. It’s always been crafting. I have other, more minor interests as well – for instance, I REALLY like bags. Hip bags, backpacks, purses, duffle bags, all sorts of bags, and I have very strong opinions on what makes a good bag. But mostly crafting.
14: What is your daily routine like?
Get up. Do hygiene things. Take care of the cats. Read stuff. Eat lunch. Do working stuff (this has meant different things at different times. Sometimes it’s crafting, sometimes it’s writing, I spent several years transcribing for the National Archives). Feed cats. Eat dinner. Craft while watching TV and hanging out with my nesting partner. Have alone wind-down time. Go to bed.
15: How do you stim?
I do some of the stereotypical ones like hand flapping and rocking. Sometimes I like to sorta snap my foot back and forth because I like how it makes my ankle feel. Other times I make popping or other noises in my mouth or throat.
16: Is there any media with canon autistic character(s) you like and would recommend to other autistic people?
OK, so there was this TV show called “Miss Fisher’s Murder Mysteries” which is a murder mystery (obviously) show which takes place in 1920’s Australia. Episode 8 of Season 2 was called “The Blood of Juana the Mad” and featured a one-off autistic woman character who was VERY well-done. I mean VERY. She is never explicitly stated to be autistic in the episode itself, possibly because they are staying true to the time and autism hadn’t been identified as a thing at the time, but it is made extremely clear in the episode itself. Seriously, it was fabulous. Now I want to re-watch it.
17: Which characters do you headcanon as autistic and why?
I recently wrote a post about the general idea of headcanoning fictional characters as autistic and now I feel weird answering this question. In any case, Tina Belcher from Bob’s Burgers, for sure.
18: If you could make one accommodation universally available and 100% accepted, which would you choose?
Specifically an autism accommodation? I’d make public TV’s less prevalent.
19: What, in your opinion, is the most ridiculous autism myth or stereotype?
Hrm. This is tough. Fair warning – I’m mostly answer these questions off the cuff, but some of them definitely deserve more thought than I’m giving them. In my defense – there are a lot of questions! Anyway, the first answer that comes to mind is the tendency of people to reduce all autistic people to a flat, 2D object. Now, that is not a myth or stereotype, and it is a thing that people do to any and all groups that are othered in society. Still, it’s the answer that came to mind first, so I’m going with it.
20: How would you describe autism to someone who knows nothing about it?
It’s like having a different operating system.
21: Do you have any happy autistic childhood memories?
I really enjoyed lining up my toys. Since no one pegged it as an autism thing, no one tried to stop me. It was just me being weird.
22: What, in your opinion, is the best thing about being autistic?
Even though I’m answering these totally off the cuff, I still skipped this one and am coming back to it. For some reason, the question itself is weirding me out and I really don’t know why.
In any case, I guess it’s the fact that I have a unique perspective that people close to me have come to really value. I think differently, which gives me my own, atypical viewpoint, and that in and of itself has value.
23: Do you think autism influences your identity, like your gender, sexuality, religious and political views or personality?
Just to nitpick part of this question – autism is absolutely part of my identity, along with my gender, sexuality, religious views, etc. Anyway, does autism influence those things? Absolutely, in that they are all enmeshed together into the entity that is Me. Also, there is a good chance that I will write posts in the future about the intersection of being trans and autistic, and see my old post about the intersection of being autistic and polyamorous.
24: Are there any internalized ableist ideas that you struggle with?
The idea that generating an income is what gives a person worth. (ooh, maybe this would make another blog topic)
25: Do you think we will achieve autism acceptance soon?
Maybe this could be another thing to elaborate on in a future post, but short answer? No, I really don’t.
26: Are you a no eye contact autistic or excessive eye contact autistic?
No eye contact.
27: Are you a “no food touching” autistic or “mesh all food up” autistic?
No food touching. One of the regular meals my family would make while I was growing up was a simple stew, and I always insisted on separating all the bits into their own piles, and then I would eat each pile one at a time. Once again, my family just saw it as me being really weird.
28: Are you a pretty rock collection autistic or soft stuffed animals collection autistic?
Stuffies collection. Can autistic people really be divided into this kind of binary? I like pretty rocks too, though admittedly I don’t really collect them.
29: Are you a get along with kids autistic or slightly afraid of kids autistic?
These binaries are getting weird. Also, I’m a ‘slightly afraid of kids’ autistic.
30: Are you a soft, gentle touches autistic or a deep pressure autistic?
LAST QUESTION! Oh boy, it’s another binary.
Deep pressure. I seriously cannot handle soft touch. It hurts.
So just to explain more of where I’m coming from when I talk about my cats – I have four cats. My nesting partner and I prefer to adopt cats that are struggling to find homes, which means we do tend to gravitate towards cats who have, shall we say, emotional issues. One of those cats is Rye, a cat I initially adopted purely because nobody else wanted her because she was just too scared for anyone to want to deal with. She’s just not the kind of cat who’s a little shy at first but then you win over within an hour or two of being nice. She needed a home, I know how to deal with anxiety and I didn’t need her to be friends with me, so I provided her with a home.
Now onto the bragging part. In the years she’s been with me, she has absolutely blossomed. Her foster mom warned me that while she is sweet and lovely once she feels more comfortable, there are some things she would just never do. And I was ok with that! Well, as it turns out she is both sweet and loving, AND she has absolutely blown away all of my expectations of things she would never do. I mean, she sleeps on my bed at night, often choosing to sleep physically on top of me. I could fill a whole blog post about how she has come so far in her time with me but that’s not actually the point of this post so I’m going to try to move on.
Sometimes I brag about her on facebook to my friends because of how proud I am of her, and sometimes my friends will comment back about how patient I’ve been with her. I try to just accept the compliment that I’m sure they are intending, but it always feels weird to me. It recently struck me as to why that might be feeling so weird.
See, it seems to me that “being patient” implies that I’m waiting for something. Or, if we go by dictionary.com: “bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.”
Which is to say – I haven’t been patient with Rye at all. Even a little bit. I’m not waiting for anything from her, and I never was. I’m not bearing provocation, annoyance, misfortune, delay, hardship, pain, or whatever else AT ALL. Or at least, not from her (let’s be real, it’s been a rough time, just in general).
Here’s the thing – I’ve never asked anything from her. I never wanted anything from her; not really. My goals for her, from the very beginning, were for her to feel safe and happy. That’s it. That’s all I wanted. I didn’t adopt her to be her bestie, I adopted her because I genuinely believed that I could provide her with a home in which she felt safe and happy. THAT’S IT.
I knew that she was afraid, and I wanted her to be less afraid. But thing is, I can’t force that. So instead, I made the conscious and deliberate choice to follow her lead. She would tell me when she’s ready to try something new, and if she’s never ready, that’s ok too. I made the choice both to trust her, and to accept her for who she was AT THAT EXACT MOMENT IN TIME. Not an idea of what I wanted her to be – exactly who she was, as she presented herself to me. That’s it. No more, no less.
And you know what? IT WORKED. Better than I ever imagined.
When she first approached me to ask for pets, I was beyond astonished. I legitimately did not think that would ever happen.
When I realized that she likes me, I was astonished again.
This list could go on for a very long time, so let’s skip to the end. I’ve learned by now that I can never assume that she will never do something. She’s stomped on that assumption more than enough times by now that I’ve learned better. I mean, I can’t apply my own timeline to her – she will do things in her time and in her way. However, allowing her the freedom to choose her own timeline is what has given her the freedom and safety to expand her boundaries as much as she has.
For years, I never asked ANYTHING of Rye. Literally nothing. Until recently, when she found a way to communicate to me that she likes me so much that she will do things purely because it makes me happy when she does them. (do you want me to go into what happened? I was about to write it out but then I remembered that this isn’t supposed to be a “brag about Rye” post) So now I will sometimes ask her for small things, specifically because it gives her the opportunity to show me that she cares.
She likes me. She trusts me. She feels safe and cared for with me. The reason for this is because I accepted her for who she is. I met her where she was, and I was willing and happy to stay with her there forever if that’s what was needed for her to feel safe. And because I met her where she was, because I didn’t need anything from her, because I trusted her to move at her own pace, she DID move. She has progressed so much more than I ever imagined, and I am absolutely certain that she never would have if I had demanded she be anything other than who and what she is.
She doesn’t have to meet any timeline to be valid or for her progress to be real. She doesn’t have to conform to anyone’s idea of what a pet should be like to be a sweet and wonderful pet. My patience will never run out because in the end, the only goal is her safety and happiness, and we met that goal long ago.
Everything else is just a bonus. And I love her for it.
Comments Off on The Power of Acceptance, OR I talk about my cat
I just recently read something about the Gruen Effect (or Gruen Transfer) that got me thinking about how I seem to work, and wondering if the Gruen Effect operates differently with autistic people.
So before I go any further, I want to ask you – what is it like when you go shopping? How well do you stick to your plan?
Ok, onwards to the post. First of all, let’s talk about this Gruen Effect thing. I actually remember learning about it (or, well, an aspect of it) in school back in the 90’s, but I guess until I was reminded of it I didn’t really think about it since. Basically, apparently when shopping, a fairly common thing to happen is to lose track of what one is shopping for, and grabbing extra things that one sees around. Stores now are often designed to encourage this and take advantage of it. When in school, the thing that my teachers talked about was specifically grocery stores – how they are designed in many different ways to manipulate your shopping experience and encourage impulse purchases. I don’t actually know how common it is for people to grab lots of extra things, but various things I’ve read seem to indicate that it happens a lot.
What I do know, though, is how I shop. And this Gruen thing does not seem to apply to me at all. AT ALL. When I go grocery shopping, I do need to bring a written list with me. However, this is because if I don’t, I just won’t get anything, or I’ll only get a very small number of things that I can remember we need, but anything I don’t remember I don’t get. And I don’t get extras.
When I do go in with a list, I ONLY get what’s on that list. I will, maybe, get some things not written that I simply know need to be gotten every week, so I feel less need to rely on the written list to get it. But otherwise, if we need something and I didn’t write it down, I don’t get it. This has actually happened to a fair extreme a few times. Sometimes we need milk, but I forgot to write it down. When going into the store, I might remember that I need to get milk, and make a mental note to get it. If I don’t write it down immediately, though, I ultimately won’t get milk. I will walk right past the huge, impossible to miss dairy display because I am so focused on my written list that I can’t remember anything else that I might need.
What’s really telling to me, though, is what happens when Nee and I go grocery shopping together, as opposed to me going on my own. When we go together, we wind up getting a LOT more than what was on the list. Nee will see things and go “hey, that looks good!” or “we could use this!” or “hey, let’s make a dinner out of that” or whatever else. Also of note, when I am alone I never, ever, grab myself impulse candy in the checkout aisle. When Nee is with me, I sometimes will, but generally only after Nee suggests it, or I watch Nee grab candy for themself.
Oh, and we do this in defiance of typical stereotypes, as I am female and Nee is male.
So that got me wondering if there’s something about me that means I operate differently. Maybe it’s an autistic thing. I couldn’t actually find anything in my initial googling, so I’m left to wonder. Which is why I’m asking you – how does shopping work for you?
As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.
Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”
But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.
A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.
Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.
This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.
Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.
I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.
I occasionally talk about autism and religion, but not very often. I tend to believe that religion is incredibly personal – my beliefs are mine alone, and I have no interest in convincing other people to believe what I believe. So while my diagnosis of Asperger’s Syndrome had a profound impact on my beliefs about self and soul, it kind of feels awkward to talk about it here. Nonetheless, I think I’m going to anyway.
So to go over the beginning – it all started with my diagnosis, then with my reading, as I do. I learned that autism is neurological – it’s in my brain. I read about a number of studies showing structural differences between autistic brains and neurotypical brains. To put it simply – autism is physical. It’s right there in the structure of the brain.
Then, not long after, I heard someone in my religious group talking about the (fairly typical, in my experience) religious belief of, basically, “you are your soul, you have a body.”
Suddenly I realized that this common belief, one I grew up with and did not really question, did not fit me anymore. I do not see my autism as something simply attached to me, like a body that a soul happens to be sitting in at the moment. Autism is intrinsic to who I am. Which means my body is intrinsic to who I am. I cannot separate the two anymore.
At first this just caused confusion and some level of angst. I looked for opinions from other people, but I was still struggling to put the concept into words. Also, I was friends with many atheists who simply didn’t believe in souls at all and took the questions as a “nature vs nurture” thing. That was not what I was trying to get at at all.
Now, just so I will hopefully not be too confusing – my beliefs are fluid. They have been ever since I went away from christianity and towards paganism. I have notice that many people find the fluidity of my beliefs confusing, as well as the peace I have made with the fact that what I believe now will change over time, not always in predictable ways. For me, a change in my beliefs is not painful, it is simply part of life.
One of the first major changes was moving from a transcendent view of reality – where the physical and the divine are separate, towards an immanent view of reality – where the physical and divine are together as one. Since I cannot separate myself from my body, perhaps I cannot actually separate my soul from my body either. Maybe that’s not how it works. Maybe I’m not some coherent soul going from body to body through rebirths, or into some kind of afterlife with a deity. But then, what am I?
Well, my body is almost like a wave of matter through time. I am made up of the matter and molecules that I consume (and convert), and those atoms and molecules and cells of my body are constantly rotating through. I am always losing molecules (for instance, the outer layer of skin flaking off, as it does, and my body generating new skin beneath, as it does), and I am always gaining new molecules through my food and drink. Yet while the matter itself is constantly coming and going, the structure of myself remains much, though not entirely, the same. My brain continues it’s autistic structure, my skeleton stays the way it is, my basic layout does not change.
So now I seem to believe that my “soul” (however much I believe in a soul) is much the same. It is simply the current iteration of “me,” made up of… well, I don’t know yet. The current collection of some small portion of all that is sacred and divine. What are souls made of anyway? I also seem to have some version of panentheism going on. Everything is god – including the gods (so yes, I am still a polytheist as well). Everything is sacred, everything carries a portion of the divine. The portion of me that is divine is, basically, my “soul.” And perhaps when I die, my soul will disperse into the greater universe the same way my body will decompose and return to the earth it came from.
All that change, from one little (huge) diagnosis.
As a quick refresher, a while back I went to the Franklin Institute on their Sensory Friendly Day. Long story short, it went badly. VERY badly. So I wrote about my bad experience and went on with my life.
Until, that is, Adrienne Kimball, listed on the website, emailed me about my blog post. You can read about that email over here. Basically, she addressed some points about the day, and invited me to go back to meet with her and talk about ways to improve the exhibits and better warn people about sensory-unfriendly areas. I thought this was pretty awesome, and decided to take her up on it.
But then… she ignored me. I tried to email her and set things up, and got absolutely nothing in reply. Since then I’ve felt… embarrassed, honestly. Like she lied to me and I was naive enough to believe the lies. I got my hopes up and thought that maybe, FINALLY, someone actually wanted to listen to autistic adults and hear what we have to say, but then it all turned to dust.
Now I feel like I’ve run out of gas. I’m just a foolish, naive aspie who has delusions of actually Doing Something Good. I’ve been trying to remind myself of the times when y’all have told me about how my writing has helped you, which is honestly WONDERFUL to hear, but I still feel really foolish about this whole museum thing. I’m trying to take a deep breath and keep going, but this feeling of being stalled isn’t going away. So I am doing what I do best, and writing about it.
The image above is of my latchhooking project. It’s the biggest one I’ve ever done – I’ve been working on it for a month, and have at least another month of solid work to go. The day the image was taken, I had done 7,921 stitches and had 8,010 stitches to go. It’s HUGE.
I tend to obsess over my crafting projects. I know that I do this; I am prone to obsessing and I find it very pleasant to get consumed by a project for a month or two until I finish it. That said, until yesterday I did not know just how obsessed I get.
I actually haven’t written much for my blog in that time. I have either written off-the-cuff posts about things that were pressing right then or relied on pre-written posts in my slowly dwindling pending folder. The reason for this is that I’ve been latchhooking. All my “creating stuff” time is spent on that project.
Yesterday* was supposed to be different, though. See, my hands have been hurting. Constantly. For days. I had decided that it would be prudent to take a day off to give my hands a chance to heal.
It didn’t work.
I fidgeted, I flailed, I twitched, I browsed the internet, I watched TV, and eventually I picked up my project and started working. Over 400 stitches later I realized that I had done the opposite of taking a day off. I realized that my obsession seemed to be a wee bit out of my control. I had even kept putting it down, talking about how I meant to take the day off from it, and then picking it back up again.
The reason I am writing this post instead of working on my latchhook more is that last night Nee took it away from me,** because seriously my hands need some time off. Even typing hurts. I washed the dishes today, and that was downright painful. Yet still, it’s challenging for me to think about doing anything else. Even the act of writing this post is kind of a cheat – I’m writing about doing latchhooking, and about thinking of latchhooking.
All of which is to say, apparently I will obsess to the point that it will become an actual detriment to my health. I am 34 years old, and I still sometimes need someone to help me take care of myself, because overcoming an obsession to do something is incredibly challenging. My desire to work on my project is greater than my desire to not be in pain.
This is really quite an interesting learning experience here. I guess at some point I’m going to need to think up some strategies for balancing an obsession to do a craft, and taking care of myself.
Follow up: Ok, today is Wednesday. I am still not latchhooking. My hands are mostly better, but there is still one specific spot on one finger that continues to be painful. I’m thinking I’ll start back up again tomorrow, and anticipate getting consumed by the project once again. Hopefully my hands won’t complain too much.
* I wrote this post on Monday, but am posting it today.
** consensually. Nee does not try to dictate what I do with myself.