Do I “Deserve” To Exist?

Have you ever noticed that it seems we need to justify our existence?

And by “we” I mean everyone. Literally everyone. It’s just that some people seem to have a head start and find it easier to make that justification than others. 

Ok, I think it’s easiest to explain what I’m talking about by starting with minority representation in fiction. The “default character” is a white, straight, cis, fully abled, gainfully employed man. The more a character deviates from that starting line, the more people will demand that the deviation be explained and justified. Sometimes this is extreme – there won’t even be a woman or a character of color unless the plot demands it. But even when it isn’t so extreme, it’s always there to some degree. Disabled characters are incredibly rare in fiction, and even MORE rare when the story doesn’t demand it. The more a character deviates from the default, the more people find it outlandish. “What’s next, a deaf lesbian Lebanese character?” I have even seen people say that they are ok with diversity in fiction, but not “forced” diversity. Ok, how do they define “forced diversity”? Apparently that is any diversity in the story that isn’t justified by the plot. 

I’m not even kidding.

So of course, then you have people saying that hey, maybe you don’t need to justify the existence of varying types of characters. Deaf lesbian Lebanese women EXIST. Disabled people EXIST. People just ARE, no compelling plot reason required.

Buuuut… I want to take this a step or two further. See, the attitudes people have about diversity in fiction extend to their attitudes towards people in real life. Not only in terms of the various forms of bigotry (I mean, totally that too, there’s just more) but in terms of people needing to justify their existence. Just in general. All the time. 

The example that first got me thinking about writing this blog post was how “contributing to society” is considered synonymous with having a job that earns money. Do you have a job that makes money? Well no matter what it is you’re doing, you are contributing to society. Do you not earn money? Then you are NOT contributing to society, no matter what else you are doing. It’s an incredibly toxic concept, but it’s absolutely pervasive. 

It shows up in other places too, though. Like the concept of having to earn our basic survival needs. People will say that we must EARN our access to healthcare, earn the food we eat, earn the roof over our heads, earn the clothes we wear. These are all things that we need to survive. When people say that we must earn those things, what they are really saying – the idea that is behind their words – is that we must earn the right to exist. That we must justify our existence in this world by being “worthy” of existing.

As I’m pretty sure is obvious by now, I disagree. I REALLY disagree. I firmly believe that everyone should have access to the basic necessities of living. I believe that this is what society is for. I’m not looking to go into detail in this post, so I’ll just mention that there is increasing amounts of evidence that this attitude is also extremely economically practical. In the end, when the poorest among us does better, we ALL do better.

…

You can stop reading here if you want. I mean… ok, you can stop reading any time you want, obviously you don’t need my permission. What I mean is we got past the bit that’s about me being opinionated and now is the bit where I get more personal. 

See, I really, truly believe all those things I said above. I apply those beliefs to everyone…….

Except myself.

Apparently I have internalized the whole concept of needing to justify existence enough that I really feel like I need to justify MY existence.

And I feel like I’m not managing it. 

I can’t justify or defend the space I take up in society, in my friend circles, hell sometimes even within my own home. I know, intellectually, that I shouldn’t HAVE to justify or defend my existence. While plenty of random strangers have acted like my existence isn’t worthwhile, those closest to me don’t act like that at all. In fact, they seem to like that I exist. 

And yet, it somehow doesn’t sink in. I don’t work. I don’t have a job. I’ve done other things, like transcribing for the National Archives or house/pet sitting for people or heck, even this blog, but I don’t earn money. 

And even though I don’t think this about literally anyone else, somewhere deep inside I think this makes me a burden. On everyone. 

The thing that’s saddest of all is that I am far from the only person who thinks this way about themself. We’re taught that we need to earn our right to exist. Even if it shouldn’t be that way, even if we don’t actually believe it, somewhere deep inside so many of us still think that about ourselves. 

Something needs to change.

Just a ramble about V-Day

(hearts represent love, right? right???)

So according to all the ads I’m seeing and various things my friends are posting on facebook, it’s Valentine’s Day. For the most part I don’t actually have strong feelings about V-Day either way, but as it turns out I DO have opinions and thoughts. Also as it turns out, I rather want to express those thoughts somewhere. As this is my blog and ultimately it is about me and my opinions, I am putting them here. If you’re purely here for autism stuff… sorry. This only relates to autism in that these are my thoughts as an autistic person. Of course, all of my thoughts are as an autistic person. Anyway. On to V-Day stuff.

I am on the aromantic spectrum. The best word that describes me is quoiromantic, which in my case largely means: “Being unable to pin down a clear understanding of romantic attraction, so being unable to say whether or not you experience it.” I have never in my life understood what romantic attraction or romantic love was supposed to be, and I have never had a clear idea of how it is different from love I have for my friends. The whole thing just baffles me. I experience love, I love people deeply, and I am in a romantic-appearing relationship. I just can’t really say how the love I feel for my nesting partner is quantifiably different from the love I feel for my friends.

For the most part, however, I am not romantically repulsed. I am fine with other people experiencing romantic love, I don’t mind romance or love stories in my media – I can even enjoy such stories to some degree or another. Sometimes I might end up confused by the things characters do or care about, but NTs often confuse me so that’s fine too.

What DOES frustrate me is the way romantic love is treated as somehow better or purer than other types of love. I don’t care for the way different loves are ranked, with romance love as being “above” friend love. That shit genuinely pisses me off. The love I feel is just as real and meaningful as the love romantic people feel.

And then there’s Valentine’s Day. A holiday that I’m told is all about celebrating romantic love. My own experience with V-Day is pretty meh, to be honest. I have tried to care about V-Day back when I thought I was supposed to, but somehow I never quite managed it. Romantic gestures mean nothing to me. (after I typed that sentence I froze for at least 10 minutes as I tried to figure out what “romantic gesture” actually means and what makes an action romantic or not. eesh)

I have friends who really hate V-Day. I respect that though I cannot entirely relate. I have managed to seriously shelter myself from ads, so if people are bombarded with ads to buy things as V-Day approaches, I am not aware of it. Since I don’t pay much attention to it, as romantic love is meaningless to me, I am also blissfully unaware of commercialization or commodification or whatever other unpleasant things that may have been attached to V-Day. I’m sure if you’d prefer to celebrate genuine and authentic romantic love, those things would be frustrating.

That said, there is something that frustrates me about Valentine’s Day, and you’ve probably already guessed what it is. That’s right, it’s the way it centers romantic love above other loves. I mean, yes, I’ve heard of “gal-entine’s” day or “pal-entine’s” day, but let’s be real. Even the people who do that see those versions as silly, less important alternatives to V-Day. I take V-Day as an opportunity to tell my friends that I love them because it’s never wrong to tell my friends that I love them. But I am also entirely aware that to my friends, my expression is a small, silly little thing that doesn’t really mean much of anything. (it suddenly occurs to me that they might see it as more meaningful if they knew I was aromantic, but it’s hard to say. I just don’t bother to talk much about my romantic orientation/lack thereof)

I want to celebrate the love I have for my friends and chosen family. I want to honor it and center it and have it be seen, really SEEN, as the profound and meaningful thing that it is.

Anyway, thank you for reading my rant. I’d love to hear about what you think or feel about Valentine’s Day. Is it meaningful to you? Or is the holiday that it has become feel like it cheapens romantic love? Do you, like me, also not feel romantic love or attraction? Do you just hate the holiday altogether? I’d love to hear what you think!

Being A Man – Complicated Feelings

Ok, I had a recent experience that I really want to talk about. But to be honest, this is really not an easy thing to talk about at all. Like, it might end up sounding like a humble brag or complaining about people respecting me or something. But it is a real thing, and I have since learned that other trans men have also had this experience, but it seems like we just don’t talk about it. Because again, it might sound like we’re complaining about something that “should” be good. So it’s hard to talk about. Well, I’m going to try anyway. Here’s hoping it works. 

Now, to be clear, I did not transition in order to gain male privilege. It was, however, something that I knew would come with it. And yes, no longer dealing with sexism or sexist assumptions about me when dealing with random men was something I was (still am, I’m still not always gendered correctly in person so I’m not actually there yet) looking forward to.

But there is another side to random strangers seeing me as a man that I actually hadn’t thought about. And I feel incredibly silly that it hadn’t occurred to me before because of just HOW MUCH I’ve experienced the female end of it all. 

OK, I promise I’m getting to the point. So while I am not always gendered correctly when people look at me, I am always gendered correctly on the phone because my voice dropped and it dropped hard. I have a Man Voice now. Which is great! I love my voice! But here’s the thing – women treat me differently now.

Women don’t treat me with more respect, exactly – they treat me with more fear. And… of course they do. So ok, I had to call my vet to make an appointment for my cat. Turns out they didn’t have any slots open for weeks thanks to the pandemic plus they lost one of their vets. And the poor lady on the other end of the phone was noticeably nervous to tell me this. Am I going to be ok? Or am I going to be, you know, one of THOSE guys, who yells and hollers as though that will make any difference at all? 

But see, here’s the thing – she sounded EXACTLY HOW I DID when I was talking to men I don’t know, particularly if I had to give them bad news. Her nervousness was my nervousness. My caution was her caution. Yet despite that, despite the fact that I have spent literal decades tiptoeing around men’s feelings, it still caught me completely off-guard to encounter a woman tiptoeing around my feelings.

I don’t like it. At all.

I’m not upset at HER, to be clear. Not at all. I know EXACTLY why she sounded like that because I sound like that. I probably still do; my vocal patterns are definitely still feminine and I have not put any effort into changing them. But knowing how she feels, knowing that I am causing those feelings, knowing that while one segment of the population will suddenly treat me with more respect another segment of the population will be nervous around me – it’s just really sad. 

There’s this youtube video I recently watched by Shaaba called “scary men being more than okay.” It’s just Shaaba reading lovely stories about men being decent human beings. Here’s the thing though – just about all of those stories started out with the woman being nervous because she isn’t sure if that man is going to be ok or be a jerk. She isn’t sure if she’s safe. She’s on her guard. She’s careful. She’s cautious. Because that’s just how it is for women. It’s how it was for me.

I wound up talking to my therapist about this (he is also a trans man) and he shared that he has had similar experiences with similar feelings. Women being nervous when needing to talk to him. Women crossing the street to keep their distance. We talked about how we can display respect and just be ok men, but in the end we can’t fix the problem because it isn’t really about us at all. It’s not about ME, it’s about the society in which I live and the gender dynamics and how male privilege runs deep. 

It also got me wondering how man cis men notice any of this. Or even – would I notice it if I had been born male? The thought that I wouldn’t notice it – that I would just see it as normal and unremarkable – is downright distressing to me. I know I’ve heard of cis men noticing the more obvious things. Things like crossing to the other side of the street or a woman walking faster if she’s alone at night and there is a man behind her. But what about the quieter things? Like that little tone of caution on the phone, or that extra bit of care when having a conversation? I can’t say I’ve ever heard any cis men comment on that – even the horrible cis men who get ANGRY when women fear them. As much as the dynamic makes me sad, I definitely prefer to notice it.

I have no good conclusion to this post. It’s just an unfortunate part of the world. I am crossing to the other side of a divide that shouldn’t exist in the first place. And while the side I’m moving to is the “better” side, I can’t say that I love it. I guess in the end, I just wish things were different. In the meantime, I’ll do my best to be an ok man.

Figuring things out “late”

This is something that I recently saw from a friend, and my mind just started chewing on it. I realized that I’ve seen this a LOT, about all sorts of things. 

That being, sometimes we figure things out or act on them “late” in life. Like how I was diagnosed as being on the autism spectrum at 30. Or how it was a few years after that, that I started on medication to help my depression and anxiety. Or how I didn’t start to transition until my mid-to-late 30’s. When I see other people talking about similar experiences, with figuring out neurodivergence or their gender or getting help, they often speak of their time before that as being “lost.” 

So before I start with my own opinion, I really want to emphasize that that is an entirely valid and understandable way to feel. To look back on ways that you were struggling and to realize that maybe you didn’t actually have to struggle like that – that there were solutions, there were things that could have been done – that’s hard. There is absolutely grief involved. I have felt that grief as well.

That said, I have found that at least for me, looking at my life before I knew what was going on as time that has been lost has never done me any favors. So, once I worked through my own feelings and was at a point of constructing how I want to view the story of myself, I took a different view as much as I could.

I am a trans man who spent over 30 years living as a woman. Those 30+ years are completely full of me wishing desperately to be a boy/man. Those years are also part of who I am now. They have shaped me in so many ways that to reject that part of my past would be to reject myself and who I am now. And honestly? I rather like who I am now. I’m pretty cool. 

I can say much the same about learning that I am autistic. Would it have been nice to have been diagnosed earlier? Yeah, definitely. Were those years of not knowing why I was different or why I struggled hard? Yes, yes they were. But I can also say with complete honesty that I did my very best with what I had and I still made progress and grew as a person. That time wasn’t lost or wasted. I was still me, I still made things and helped others and had friendships and did my best.

With my timeline of psychiatric medication this is even easier. Yes, I was reluctant to get on meds and refused to do so for years on end. I am also very VERY glad that I waited until after I was diagnosed as autistic and was able to get a psychiatrist who knows how to medicate autistic people. Because the fact is – my medication needs are different from neurotypical medication needs, and I need to have a psychiatrist who understands that. I also, on a personal level, needed to know that I had done EVERYTHING I COULD to manage my depression and anxiety on my own before I went and got medications that alter my brain chemistry. I know not everyone feels that way, but it’s how I felt. And it’s what I did. And when I reached that point when I knew that there was nothing more I could do on my own and if I was going to get any better I needed help, I went and found that help. 

If viewing that “before time” as time that has been lost genuinely works for you and how you conceptualize your life, I’m not going to tell you that you’re wrong. You get to tell the Story of You in whatever way gives you the most meaning. But if it doesn’t – if it leaves you with grief or pain that you struggle to resolve, consider that you don’t actually have to see your life that way. Time spent differently isn’t necessarily time that is lost. It’s still part of who you are. It has still shaped you, and how you respond to it will also shape you. You have some power as to the shape you take; don’t be afraid to use it.

Healing looks different for different people

Image description: panel 1: someone is stuck on a desert island. They have used wood to spell out the word “help” on the island.

Panel 2: The stranded person has used the wood that spelled “help” to build a raft.

Caption: Victim mentality will get you killed. No one is coming. It’s up to you.

I have not been able to figure out the original source. 

A while back I saw this on someone’s fb timeline. I gotta say – I had FEELINGS about it, and I want to talk about those feelings. 

Now, apparently this image and its accompanying message was very meaningful to the person who shared it. They talked about how their trauma left them with a victim mentality and an overall sense of helplessness. About how healing, for them, was about learning to take responsibility for themself and overcoming that feeling of helplessness. I do want to acknowledge and honor that message. I suspect that’s what the artist originally intended to convey, and it clearly worked for at least some people.

Buuuuut…

It hit me differently. A LOT differently.

See, MY trauma left me with a lot of difficulty allowing myself to rely on others. In fact, my current Goal in therapy is being able to tell people when I’m not ok, and let me tell you – that is a HARD goal. I’ve been at it for over a year and I still haven’t really achieved it (made some progress, but not there yet). My next Goal is being able to ask for help. So to be abundantly clear here – I am so far away from being able to ask for help that it isn’t even my current Goal. I need to hit a different Goal before I can even BEGIN to approach that one. 

So when I see an “inspirational” comic treating asking for help as “being a victim” and somehow bad… well, it’s hard. Because I’m inclined to agree! Screw asking for help! No one will help you! You’re on your own! 

And while the metaphor may be meaningful, the actual direct story those images are telling is not a good one. Sure, spelling “help” in the sand still depends on someone finding you. But if you’re stranded in the middle of a sea and you make a raft to set out an “save yourself” you WILL die. Or at least, survival absolutely depends on being found and rescued – just like it did on the island. Only being found is harder, and your probability of dying is higher.

And I AM that person who would construct a raft and set out like that only to die. Because it’s so much easier than asking for help. As I struggle with letting LITERALLY ANYONE know when I’m having a hard time (even my nesting partner. Even my therapist), getting the message that actually I shouldn’t do that at all, I should just keep on struggling alone even when it will inevitably lead to painful failure when asking for help would have honestly been better, it hurts. It hits me like a brick to the chest. 

My truth is just as valid as the person who shared it and found meaning in it. 

THAT is a truth that I personally find much more meaningful than any pithy little saying. The truth that everyone’s progress towards healing is different. My trauma left me in a very different place than the person who shared the image. As such, my journey is different. My healing is different. My needs are different. Neither one of us is wrong – we’re just on different journeys, so the exact same thing will have wildly different meanings to each of us.

I really think this is so important to remember. While I’ve calmed down about it now, at the time I was pretty angry when I saw that picture. It had nothing at all to do with me and everything to do with the person who shared it, but it FELT personal. It FELT like an attack. (in my defense, I did recognize that my feelings were not reality and I refrained from actually saying anything) It’s helpful to me (and probably to everyone) to remember that everyone is on their own path, and that path might look NOTHING like mine. 

Involuntary hospitalization, a response

I was perusing youtube, as I do sometimes, and stumbled across a video in which a psychiatrist talks about his approach to involuntary hospitalization, and makes some generalities about how the mental health profession approaches involuntary hospitalization as a whole. 

To put it briefly, he claims that involuntary hospitalization is only used in extremely dire cases of suicidality. Cases where the patient has immediate risk, and it looks probable that things will change in a week so it’s really a matter of getting them through that week.

And I have FEELINGS about this. Strong enough FEELINGS that I want to write about it. Now, I am going to go ahead and assume that everything this psychiatrist said is totally true for him – but it is very much NOT true for the mental health profession as a whole. 

So I’m going to go ahead and talk some about my history. I have been involuntarily hospitalized three times in my life. One of those times was honestly justified, the other two were not. None of them actually helped me. 

The first time was when I was in middle school, and I didn’t yet have any real concept of needing to hide suicidal thoughts if someone directly asked about them. I was in a special ed program due to being “emotionally disturbed” and one day my special ed teacher sat me and another student down to just have a casual conversation with us. At some point in the conversation, the teacher oh-so-casually asked us if we had ever thought about suicide. We both answered in the affirmative. Then she asked if we’d ever thought about how we would accomplish it. The other student looked a little surprised at the idea and said that she had not. I, being entirely too naive, said that I had and happily launched into an extensive explanation of all the ways I had considered of how to unalive myself and the reasons I had rejected each possibility or kept it as an actual possibility.

Now, I can certainly see this freaking the teacher out. It’s probably alarming to hear! I could definitely see recommending therapy or something in response. To be clear – I didn’t have anything resembling a plan or any kind of intent to act on it, just thoughts that, while alarming, were not immediately dangerous. In any case, maybe a day later I found myself in a hospital for “suicidal thoughts.” 

—

The second time was in high school. This time I really had tried to unalive myself, so it’s hardly surprising that after my ER visit I was whisked off to a psychiatric hospital for a while there.

—

The third time was in college. I was depressed and self-injuring (which was nothing new, I had been doing that since elementary school). That was apparently enough to wind up locked away yet again

—

I consider myself extremely fortunate that none of my experiences caused me significant trauma. There are many people out there who are not so lucky. I still had to deal with doctors and nurses who openly did not care about the patients, some who even had open contempt for their patients, hearing care providers loudly mock me from just past an open door, plus the overall dehumanization that seems to be part and parcel of psychiatric hospitals. 

While I can see how one of my hospital stays was justified, absolutely none of them actually did me any good. They taught me better ways to hide my pain, the importance of not actually telling people when I’m not ok, and that there are limits to how much I can trust the people who are supposed to be taking care of me. 

I am in therapy now. I am genuinely happy with my therapy and I like my therapist. But I will never, ever tell him if I’m suicidal or pondering being unalive. I have actually thought about how nice it would be if I could ask for help when I’m feeling like that, but the reality is that it’s not worth the risk. Because I will NEVER go to a psychiatric hospital ever again. I am so serious about that. Never ever ever. 

When a mental health professional says that they only consider involuntary hospitalization in the most extreme of circumstances, the primary thing I hear is that they consider involuntary hospitalization sometimes. They consider it a valid tool and they will sometimes use it. Which means that when it comes to suicidality, I will continue to go it alone. This is even more true now that I am transitioning, as I would definitely not call psychiatric hospitals to be safe for trans people.

The comments section of the video has quite a few people with experiences similar to or worse than mine. I am clearly not alone here. And I’m saddened to see that the youtuber did not appear to respond to any of those comments. This is clearly a serious issue that mental health professionals NEED to address.

I do want to add a final note that while all of this is my truth and extremely serious for me, I do know that there are also people out there who have benefitted from psychiatric hospitalization. Their truth is theirs, and I don’t intend to invalidate it. Nor am I trying to influence anyone on what is right for them. Only to say what is right for me, and to point out that regardless of what is right for any given individual, there is clearly a systemic problem going on and it needs to be addressed.

Prosopagnosia

(Image is of a series of faces lacking specific features. I was not able to find who made it)

Hey, want to read about another thing about me? Well… I certainly hope you do, because I’m about to write about it.

I have this thing where I am not so great at recognizing faces. One example – remember the Lord of the Ring movies? Remember two of the characters – Boromir and Aragorn? Well, I couldn’t tell them apart. I had to watch the ENTIRE trilogy more than once (and that is many hours of movie watching right there) before I could even begin to tell them apart. Let me tell you, that made for some confusing movie watching. Ok, rugged guy with a goatee is talking to someone, which one is he? I was actually pretty ok on recognizing the other characters. I could even (mostly) tell the hobbits apart. It was really only those two who looked indistinguishable to me. And with even that, the movies could be remarkably confusing at times because I didn’t know who was doing what. 

Another story. This time from middle school. A whole lot of the boys were long and lanky, with short brown hair and a goatee. I couldn’t tell ANY of them apart. School felt like being surrounded by faceless clones – a handful of people were sufficiently visually distinctive that I could recognize them, but they were by far the minority. Anyway, that’s not actually the story, that’s just the background. In gym class we had a bit where we had to run a mile, which had been judged as 8 laps around the parking lot. Either in an effort to keep us honest or just to give the runners one less thing to think about, we were paired off – one person runs, the other person watches and counts their laps. Sounds great, right? Well, I was paired with one of the dozen or so Long, Lanky, Short Hair and a Goatee boys. 

Oh no.

I tried going to the teacher to let him know that I could not distinguish my partner from the other boys, but he was not interested in listening to me. So… I did my best. Which wasn’t that good. I desperately tried to find SOME distinguishing feature so I could recognize him but did not succeed. I stared intently at the faces of the boys running past while the run was happening, trying to see if one of them would click as the one I’m supposed to be watching. Sometimes I would see one of them and think “ok, I think that’s him” but other times I was sure he must have run another lap by then and I missed him. 

This story has no solid wrap-up. I did my best. I called 8 laps when I figured it was probably right, and no one questioned it. I never was able to tell my teacher about my inability to recognize my partner. 

One more story. This one from just a few days ago. I like to explore music that is new to me, and since I live under a metaphorical rock there is a LOT of music out there that I’ve never heard or even heard of. I recently found a song that’s by two singers – Jessia and Bebe Rexha. Having no idea who those two ladies are, I went ahead and googled them and took a look at the image results. They… kinda look identical to me. I spent some time looking at the images REALLY HARD and making a point to check for typical distinguishing features (lip shape, cheekbones, eyebrows, chin shape, things like that) and eventually was able to tell them apart, but it was a very deliberate exercise I had to do. It does not come naturally to me at all.

Well, as I’m sure you have already pieced together since I titled my post after it – this is a condition called prosopagnosia. It is not at all uncommon in people on the autism spectrum. 

I’ve never really gotten better at recognizing faces. I’m honestly not sure that it’s something people can learn. I HAVE gotten better at recognizing people via other means – things like their clothing style, the way they move or stand, maybe something particular about how they do their hair. I am also generally able to recognize people if I’m around them enough. At some point enough about them becomes familiar to me that I can recognize them when I see them. Though maybe I’ll just leave out how long that has taken me at times, or for just how long two of my friends (who were girlfriends of each other, and so together a lot) were completely indistinguishable to me. I just spent that time trying to avoid assuming who was who and waiting until they said something that made my brain go “oh! It’s THAT one!” I can tell them apart now, but damn did it take a while.

It’s not so bad to live with now, but wow was it frustrating and painful while I was growing up. I’m pretty sure it would still be frustrating and painful if I had to exist in an office environment or something like that. Luckily, my life is constructed in such a way that this particular difficulty isn’t too disabling for me, but not everyone is so lucky. 

So consider this your reminder for the day that not all disabilities are visible. They aren’t even necessarily physical. And if you’re one of the allistic people reading this and you have a co-worker who never seems to recognize you? Well, maybe it isn’t their fault, and maybe it’s just as frustrating for them as it is for you, if not more so. I have many, many more stories of not recognizing people – I simply picked a few to share. I also have stories of recognizing people when others couldn’t – by silhouette. No features visible, but I could tell who it was by the way they walked. I process information differently than other people do. This means a lot of things, and one of them is that faces just don’t give me information all that well. 

But it’s part of who I am, and I’m ok.

The Gruen Effect

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?

How functional am I?

I’m told I’m high functioning.

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.

There is no wind in my sails

It’s about the Franklin Institute again.

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.

What do you do when you hit something like this?