Category Archives: opinion

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. 

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Justice, Mercy, and Definitions

Sometimes I like to think about the concept of justice. Specifically, what IS justice, really? And related to that, what is mercy? I plan to get more concrete about these ideas in application to the real world at a later point – right now I just want to keep things more conceptual.

There seems to be an idea, at least in the US, that justice = punishment. We achieve justice by punishing the people who do bad things. I grew up in a conservative christian denomination, and punishment was a VERY big thing in that. Punishment and justice were words that were used practically interchangeably. 

In more examples that I can’t find the source for because it was all from many years ago, I used to occasionally read a blog by an autistic pastor. In one blog he posted a sermon he gave regarding two values that he considered particularly important to christians – justice and mercy. The question was could they coincide simultaneously. The conclusion was they could not. What really stuck out to me when I read it was that he never actually tried to define “justice” for his audience. Instead, it was simply treated as a given that justice means punishment. It was also treated as a given that mercy means refraining from punishment. Since mercy would mean less punishment, and punishment would mean less justice, they two must be at odds.

I’ve seen the same concept come from atheists as well. Even up to one atheist declaring “Mercy is, definitionally, the suspension of justice.”

Needless to say, I find these definitions VERY limiting.

So I say, let’s go to the dictionary! What does dictionary.com have to say about justice and punishment?

Justice:

  1. the quality of being just; righteousness, equitableness, or moral rightness:
  2. rightfulness or lawfulness, as of a claim or title; justness of ground or reason:
  3. the moral principle determining just conduct.
  4. conformity to this principle, as manifested in conduct; just conduct, dealing, or treatment:
  5. just treatment of all members of society with regard to a specified public issue, including equitable distribution of resources and participation in decision-making (usually used in combination):
  6. the administering of deserved punishment or reward.

Now all of this is absolutely fascinating to me. So many definitions! And despite the fact that (in my area of the world) people treat justice as simply being punishment as a default, it doesn’t show up on the list until definition six. SIX! 

Beyond that, justice seems to be about our conduct. Our actions. Our choices. So justice might be punishing a robber. But it could just as easily be making sure that robbery never happens in the first place. This is where phrases like disability justice, health justice, environmental justice, etc come in. 

And then there’s mercy. Once again, going to the dictionary:

Mercy:

  1. compassionate or kindly forbearance shown toward an offender, an enemy, or other person in one’s power; compassion, pity, or benevolence:
  2. the disposition to be compassionate or forbearing:
  3. the discretionary power of a judge to pardon someone or to mitigate punishment, especially to send to prison rather than invoke the death penalty.
  4. an act of kindness, compassion, or favor:
  5. something that gives evidence of divine favor; blessing:

The mitigation of punishment miiiight be seen in definition 1, but we only see it for sure in definition 3. Otherwise, going by these definitions, mercy can be seen as acting just compassion and benevolence toward people. Maybe those who are against us, but also maybe everyone. And by that way of looking at it, we can absolutely have mercy and justice coincide.

It is both merciful AND just to create accommodations for disabled people so we have the same access to things as abled people do. 

It is both merciful AND just to create a world where no one faces the choice of stealing food or going hungry. 

I feel a little uncomfortable bringing up examples because they could be seen as “political” and I’ve generally tried to keep politics off of this blog. In this case, though, it’s necessary. This is a topic that matters to me, and how we, as a society, conceptualize justice directly impacts how we make our laws. How we structure our society. The systems we put in place, and the systems we do not. 

That is why it matters so much. Thinking about what justice is on a conceptual scale is how we decide how we implement justice in the real world. Personally, I think justice needs to begin well before we reach the point of punishment. 

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Empathy 101 and 201

I have some Opinions on how I see some people talk about empathy and I want to talk about it. Of course, there are LOTS of things I could say about empathy, so to be more specific, I want to talk about some of how people conceptualize empathy – ways that I mentally call “empathy 101” and “empathy 201.”

Empathy 101 is where you imagine yourself in someone else’s position and think about how you would feel if you were experiencing whatever they are experiencing. The idea is that you should consider that they are likely feeling something similar to what you would be feeling and you can begin to empathize with them.

Empathy 201 is where you take in that different people react to situations differently, and not everyone will feel the way you feel in various circumstances.

The thing that seriously irks me when I see it is when people skip over Empathy 101 and try to go straight to Empathy 201. It might sound great in theory, but in practice it doesn’t tend to go well.

Here’s the thing – a major point of Empathy 101 as a deliberate practice (especially for children) is realizing that other people are just as real as you are. Other people feel things just as vividly as you do. Other people have just as rich of an inner life as you do. Small children sometimes need to be coached through this idea and in my experience, some adults still haven’t figured this out. 

Now, Empathy 201 is great. It’s super important. But it doesn’t really work unless you’ve fully internalized the concepts behind Empathy 101. And unfortunately, I’ve seen people use the basic idea of Empathy 201 to excuse their own asshole behavior. It generally goes something like this:

Derriere Hole: ::does a thing that is hurtful, mean, or otherwise unkind::

Random Observe: Wow, that was a mean thing to do. How would you like it if someone did that to you?

Derriere Hole: Well everyone feels differently about things, so how I would feel isn’t necessarily how anyone else will feel, so I refuse to even consider the question.

Derriere Hole has MISSED THE POINT. The point is to genuinely consider the impact your actions have on others – keeping in mind both how you would feel AND possible other reactions people might have. This can be a lot of work sometimes, I won’t deny it. But it’s also VERY important to do, particularly when interacting with others or doing things that will have a distinct impact on others. 

Having said that, I do feel the need to add that I have seen the switch side of things as well – People using Empathy 101 as a way to dismiss other people’s feelings that don’t line up with what they think people “should” feel. “If I were in your position I would be feeling X. You are clearly Wrong when you claim to be feeling Y.” Heck, my own dad has done that to me.

This is why I think it’s so important to keep both ideas in mind when thinking about what other people might be feeling. Empathy 101 on its own isn’t enough. It doesn’t get replaced by Empathy 201, though – only modified. 

Of course, the real problem is that some people just don’t care about what other people think or feel or experience. And those people like to have excuses for their lack of caring. Still, I find it particularly irksome when they use the trappings of empathy as their excuse. That’s just not ok at all.

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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.

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Ordinary vs. Not

Or maybe Normal vs. Not.

This has been on my list of possible topics for many, many years. It was on my old list, before I stopped blogging for several years, and it’s still there. It’s something I want to talk about, but it’s hard for me to find the words. So I’m just going to do my best and hope at least a few people hear what I’m trying to say.

The first problem is what even is “normal”? It’s a tough question. I’ve seen the concept of “there’s no such thing as normal” for years now and I’ve had a broad range of reactions to it. The first time I saw it, I hated it. It made me SO ANGRY, because “normal” was a dream for me. I wanted, so very badly, to be normal. To see “normal” be dismissed like that felt like a personal affront. Like it was just casually dismissing all of my deep and complex feelings around the basic fact that I’m NOT normal.

Time has, of course, since passed, and my view has evolved at least a little. If you asked me to describe what a “normal” person is I don’t think I could give you an answer. There’s “typical” but that’s different from “normal.” And there’s no such thing as a typical person. There are various traits that can be listed as typical (like neurotypical), but I’m pretty sure not a single person on the planet is entirely made up of typical traits. If there is, that in itself is pretty atypical.

Even so, I am Not Normal in ways that make me stand out and be on the receiving end of discrimination, hate, and other unpleasantness. There are, of course, the two that this blog centers around – I am autistic and I am trans. I didn’t choose either one. In fact, I spent years of my life desperately trying to be normal in both of those areas. All it got me was misery and failure. In the end, I am who I am and that cannot be changed. 

So another aspect of this is the different ways I’ve seen people view the concept of “normal.” For me, “normal” was something I longed for. I spent so much of my life ostracised because of my differences and my inability to fit in that normalcy really looked wonderful. I genuinely thought that the key to happiness was achieving some standard of normal. Of course, happiness has come from self-acceptance and self-love, but that’s a topic for another time.

But then there are people who view “normal” very differently. Which really shocked me at the time I ran into it. For instance, I once had a friend with a Ph.D. who really prided herself on her intelligence. We once had a conversation on our views of what “normal” is and it was a shock to both of us. Because to her, “normal” was something to be eschewed. Normal was bad, normal was less. Normal was beneath her. She had grown up with the idea that it’s important to be better than normal people, smarter than normal people. She presented me with the analogy of pens in a cup – you don’t want to be just an ordinary pen in the cup, you want to be the BEST pen in the cup, the one everyone wants to use. I responded by saying that in that analogy, I’m not even in the cup. I’m the pink glitter pen over on the side that’s maybe super great in situations that call for pink glitter but otherwise I tend to be overlooked. From my perspective, ALL the pens in the cup are normal. From her perspective, I don’t even exist to be compared to.

It was an interesting conversation.

Now let’s have yet another example from my life! I don’t even know how many years ago, probably from way back in my 20’s, when I was on a dating website and was still living as a woman. I got a message from a dude who used that classic line “you’re not like other women” as some kind of bizarre compliment. Of course, I’m not like other women in that I’m a man, but I was in heavy denial at the time so that’s not how I took the comment, nor was it how it was meant. I wasn’t about to accept a compliment that involved insulting an entire gender, and I said as much in my reply. He came back with something about how he had thought I could have been extraordinary, but apparently I just want to be ordinary (sorry, the messages are long gone so we’re relying on my memory here for the general gist of what was said). That was the end of the conversation but I must say, I found that last reply of his HILARIOUS. He obviously intended it as some kind of neg or for me to feel insecure about myself, with “ordinary” somehow being bad or undesirable.

At the time, I was definitely still wanting to be ordinary. I didn’t know I was autistic but I did know I was weird and different and struggled in many ways that other people didn’t. I didn’t realize that I was trans, but I did know that I hated being a woman, wanted desperately to be a man, and absolutely loathed certain parts of my body. Being “ordinary” sounded absolutely wonderful compared to that.

As I wrap this post up, I do want to acknowledge that I did not attempt to define “normal,” “typical,” or “ordinary” in this post. The words, while similar, are not identical and are not used in the exact same ways or domains. My partner wanted to point out that to them (thanks to their work) “normal” is a matter of distributions. However, no one bothered to carefully define normal or ordinary in these conversations or memes either. They are words that we have feelings about, and clearly those feelings can vary wildly depending on the person and how they personally relate to those words

I still don’t know what “normal” is. Maybe there’s no such thing (at least when it comes to people). Maybe “normal” is whatever we make it to be. If “normal” is a list of traits, then I’m normal in some ways and not normal in others. 

Ultimately, I’m me. And anyone who tries to pass judgement on me or make me feel things based on my adherence or lack thereof to some standard of normal is definitely someone I want nothing to do with.

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I figured out what “high functioning” means

Just to jump straight to the point here – “high functioning” just means “passes for neurotypical (NT).”

Ok, now the ramble about why I think that and how I reached that conclusion.

Non-autistic (and some autistic) people really seem to want to divide autistic people into two basic categories – high functioning and low functioning. The criteria, however, always seemed to be vague and undefined. Years ago I had found a website (maybe on tumblr? I really don’t remember) that was just a collection of what autistic people had been told makes us high functioning. Sadly it either doesn’t exist anymore or possibly I just can’t find it, but it was a fascinating smattering of things. Maybe it’s because we smile, or because we have a job, or because we talk well or write well, or who knows?!

We autistic people (or, at least, a great many of us) have been trying to say that this division isn’t actually useful or helpful in any meaningful way. For instance – I cannot hold down a job. I’ve tried, it does bad things to me. I can write eloquently enough, but I struggle with conversation and am lost in group dynamics. Usually I can go grocery shopping by myself, but sometimes I will get completely overloaded and end up huddled in a ball with my arms over my head while everyone else gives a wide berth to the strange person doing strange things. 

I am generally labeled as high functioning, even as people who are labeled as “low functioning” can do things that I cannot, like hold down jobs or make eye contact. So why am I called high functioning? Well, it’s simple, really. I am categorized as “high functioning” because during brief interactions, I will often enough pass for NT. Unless there is already something wrong (like I’m having sensory overload) I can mask reasonably well for short periods of time and people are unaware that they are talking to an autistic person. 

The strain of masking can be immense at times and take an absolutely incredible toll, but I do it anyway. Why? Because I fear how people will react if they can see that I’m different. That I’m “not quite right.” As I talked about when discussing whether or not to disclose my autism to my doctors, I worry about assumptions they may make about me. Will they still believe in my ability to have autonomy over my body? Will they be like that one guy I met on a train that one time and ask me where my “handler” is? 

Because that’s how it is. People make a quick assessment of you and then make a whole bunch of assumptions based off that assessment. That’s at least partly only to be expected – we can’t deep dive into the personality and abilities of every person we meet – we interact via shared social cues and assumptions. It’s the only way we CAN interact for basically any brief contact we have with another human being. And that’s fine… until it isn’t. 

Sometimes those assumptions are flawed down to their very core. Like the assumption that “high functioning” people don’t need support, and “low functioning” people just can’t do things. Or that time when someone took my saying that I don’t want to be cured as meaning that I don’t need help. Which just… what? How in the world did you connect those two wildly different points? Yet people do, ALL THE TIME. And one of the things people do is make an assessment of a person based on a few seconds of seeing or interacting with them, judge them to be high- or low-functioning, and then draw further conclusions from that regarding their abilities or their needs.

We need to stop using the terms. Still, when I had the realization that high-functioning just means “passes for NT” it really felt like suddenly things fell into place. Suddenly so many things that had been confusing just made sense. THAT’S why people say that. THAT’S what they mean. And that’s why they have no idea what they’re talking about when they try to use it to figure out what we can or cannot do.

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Income does not equal Worth

dollar sign image, creative commons, from Rareclass

I want to talk a little bit about a thing that I really, truly struggle with. I live in the US, which is an extremely capitalistic society. Here in the US, your value is strongly equated to your income, in some sectors to the point that your income determines your morality (rich people are good regardless of what they do; poor people are bad regardless of what they do). Disability is often seen as a moral failing, and being too disabled to work is seen as either shameful or lazy.

I have been very open on my blog about the fact that I do not have a job or do work for an income, as well as the fact that any time I try to do so I end up profoundly Not Ok. What I am less open about is the fact that I feel incredibly deep shame around that fact. Nor has everyone around me been understanding of my difficulties in work. I’ve had second wave feminists tell me (back when I was presenting as a woman) that I should get a job Because Feminism with clearly no understanding of why I wasn’t working. I once had a therapist spend months trying to push me to get a job until she saw me being Not Ok and changed her mind.

Now, intellectually I don’t at all think that income means worth. I believe that everyone has worth, just by existing. I believe that everyone deserves food to eat, access to healthcare, and a reliable place to sleep and bathe regardless of who they are or how much money they have access to. I believe the role of society is to support everyone. I believe that there are many ways to contribute to society that don’t necessarily involve generating an income. In fact, given that “generating an income” relies on producing something that other people are willing to pay for, I’d say that there are MANY ways to help and contribute to society that don’t involve getting paid.

Yet despite these beliefs of mine, I have strongly internalized the idea that worth comes from generating income, which means that since I don’t generate income I must not have worth. I am constantly bombarded by the message that I need to work for money to have value as a human being – both from society at large and from people I am or have been close to (not everyone I’ve been close to, but definitely some of them). I frequently wonder what kind of income work I could do that wouldn’t leave me Not Ok. Something like working all by myself in some dusty basement doing archival work or something (ok, that one is less a practical idea and more a fantasy. ANYWAY). 

I wish I had strong words of wisdom I could put out there for other people who feel like I do, but I don’t. All I have is 1) the firm belief that we all deserve to live, and thus deserve the things needed to live, regardless of our ability to produce an income, and 2) an internalized belief that because I do not generate an income I have less value than the people around me. It’s rough.

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If a diagnosis matters to you, then it matters

Image by Nick Youngson creative commons license

In the autism spaces I’m in, a particular scenario comes up pretty often. It goes roughly like this: A person, I’ll use the name Finley, is an adult who believes they may be autistic. Finley has looked into as much as they can – they’ve checked out the diagnostic criteria, compared it to their own behaviors and history, and something is clicking. It looks like autism might explain parts of themself that they have struggled with their whole life. Finley isn’t super comfortable with self-diagnosis and really wants to know for sure, which means going out and finding someone to go through an official diagnostic process. Then, the people around Finley try to stop them. The people say it’s pointless, there’s no use, Finley is an adult now so why bother, it’s an expense that has no purpose. Finley ends up in an autism space to ask about it. Is it worth getting a diagnosis? Are all those people right? Should Finley just give up on this idea of knowing for sure?

So to be totally, perfectly clear – Finley, if getting a diagnosis matters to you, then it matters. Period, full stop. You shouldn’t have to justify it to anyone, because the fact that it matters to you is ultimately all that matters.

That said, if you’re in the US, you’re probably going to have to pay for it yourself and it isn’t necessarily cheap to do. If you need financial help to access diagnosis, the sad reality is that you will probably need to find a way to justify your need to other people. You shouldn’t have to, I think it’s wrong, but this is the world we live in. So how to do that with people who really don’t see the point?

This can honestly be tough. When I first sought an official diagnosis I asked my dad if he would help me pay for it. To be clear – I didn’t ask him to pay for the whole thing, only if he would be willing to contribute some amount. His response was to compare it to an employee asking their boss for a loan for a job project, and demanded I justify it in those terms. I’ll be honest – I was pretty shocked by that and did not actually manage to comply with his demand. He did not help with the expense of diagnosis. Which is to say – I know extremely well that sometimes the people who are supposed to support us just don’t or won’t. 

So how DO you justify it to people who don’t see the point? Well, part of this depends on whether or not they are acting in good faith. If they don’t want to see the point, nothing you say will convince them. That is just an unfortunate truth. But if they genuinely WANT to understand, there are a few ways to approach this.

If you are in a situation where you need accommodations in your job or wherever else, an official diagnosis will really help you there. If they try to come back with the claim that you didn’t need accommodations before so why do you now, well… let me make an assumption here. My assumption is that you DID need those accommodations the whole time, and the fact that you weren’t able to get them has led to burnout, meltdowns, shutdowns, and other unpleasantness. You’ve reached a point where you’re running on fumes, and something needs to change. An official diagnosis will help you get the changes you need.

The comfort of certainty. If you’re like me, not being able to point to a diagnosis to say FOR SURE that you’re autistic just doesn’t feel good enough. Like, ok, I put literal years of time into looking into it and reading and looking at a variety of diagnostic criteria and I reached a point where I was able to be pretty expletive certain, but I just wasn’t comfortable with that. I wanted to know for sure. I’m fortunate enough that I had other people in my life who understood and supported that, even if my family didn’t.

To be clear – I’m not at all trying to say that official diagnosis should matter to everyone. Only that if it matters to YOU, that’s valid and real. I respect that and so should everyone else. It’s unfortunate that we live in a society where official diagnosis is often unattainable without social support. I’m sorry if your social support is lacking and you’re surrounded by people who are dismissive of you. I believe you, and it matters.

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No Shame in Bailing

I imagine many of you will recognize the title of this post as being from Steven Universe. I want to talk some about how this line hit me and what it means to me now.

When I first saw the episode when this line showed up (S:1 E:28 “Space Race”), the line itself kind of shocked me. My initial reaction was basically “what? No way!” because it is so very very different from basically anything I had ever heard before then.

For a little bit of context for those who haven’t seen it – in the episode, Steven (a child) is about to try riding a little hand-made cart down a hill, and his father (Greg) takes him aside for a few fatherly words of wisdom. Those words of wisdom concluded with (essentially, I might not be remembering this exactly) “and remember Steven, there’s no shame in bailing.”

Whaaaaat?

Since when does a kid’s show tell a child that it’s ok to quit? Don’t we tell children to always see things through? We say “winners never quit and quitters never win!” We say “don’t start something you can’t finish!” This thing, about it being ok to try something you aren’t sure of and just quit if it isn’t working was quite literally brand new to me. Needless to say, I was extremely sure that Greg was saying something bad and he was going to be proven wrong.

So imagine my surprise when shortly afterwards, bailing turns out to be exactly the correct thing to do. Not once, but TWICE! In an 11 minute episode? What is happening? How can this possibly be the moral of the story?

It’s been over six years since that episode aired and being the overly-analytical person that I am, I have spent a fair amount of those six years thinking about that episode and that line in particular. I am now firmly of the opinion that Greg is absolutely correct. There is no shame in bailing.

Here’s the thing – I have anxiety. I have sensory issues. I struggle in group social situations, because group social dynamics continue to elude me. Giving myself permission to bail has opened up so many opportunities for me to try new things that I’m not sure about. Knowing that I don’t have to see something through means that I can try something that might be great, but also might be too loud or too complex or just too much for me. It’s ok for me to take risks, because it’s ok if they don’t work out. I don’t have to risk harming myself by trying to force myself to continue to do something that’s hurting me, because I give myself permission to bail. 

This also means it’s easier for me to make an honest effort to really, genuinely try something new and scary. When I believed I had to see everything through, I didn’t try all that many new things. Because what if it didn’t work out? WHAT THEN? Well, now the answer is that I bail. And that’s ok. 

I really want this to become a bigger thing in our society. I want our children to be taught that it’s ok to quit – it’s awesome to try new things; that’s how we find new things we love, but not everything we try is going to be good for us. And sometimes we won’t learn that until after we try it. And THAT’S OK. 

Go ahead and try a new thing. Go ahead and take a risk. And if exiting turns out to be what you need to do to stay safe, then exit without shame.

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Let’s talk about spectrums

Let’s talk spectrums (no, not the book I’m published in, yes I am shamelessly plugging myself here). Autism is commonly referred to as a spectrum. So are many other aspects of humanity – gender is a spectrum, various mental illnesses are spectrums, lots of things are spectrums.

Now, the point about the autism spectrum not being a line is nothing new – I’m just adding my voice to the chorus here. I only want to add that spectrums in general are not lines. Looking at spectrums as lines is limiting us and giving some people some very incorrect ideas about what “spectrum” means.

Story time! Once, someone tried to explain to me why the phrase “everyone is a little bit autistic” is actually totally correct. See, autism is a spectrum, right? And spectrums are lines, right? And the autism spectrum goes from “not at all autistic” on one end to “all the way autistic” on the other end, right? So really, EVERYONE is on that line, RIGHT?

NO. WRONG. HOLY MOLY ABSOLUTELY NOT.

Ok, for the purposes of this post I am going to be using the color spectrum as an analogy, because I think it really works well.

So when most people think “spectrum” they seem to think something like this:

Image from wikipedia

You know, a basic line of color. And sure, this is a spectrum, but it really could be so much more.

I’ve actually seen some people just stop here and try to not use “spectrum” to describe things, because of how many people think that a spectrum is just this linear thing. I sympathize with that perspective a great deal, but I am still on the side of pushing back against the idea and trying to widen the idea of what a spectrum really is.

Of course, even here that person’s line of thought that I mentioned above falls apart. Because the color spectrum doesn’t go from “a little bit of color” to “a lot of color.” It goes through the range of colors that we can see. The logic! It is flawed!

Anyway. Let’s go back to colors, shall we? The color spectrum does not actually have to be displayed as a line. There are, in fact, other ways to show it that give us a broader range than the simple line.

Image from Wikipedia

Here we see a 2d color space, including both color range and saturation range. It’s a spectrum! Being more than a line!

BUT WAIT, THERE’S MORE.

We also have the RGB Colorspace Atlas books, co-designed by Daniel E. Kelm and Tauba Auerbach. They are 8x8x8 books going through the color spectrum, each page itself a small spectrum. The end result – a color cube. 3d color. A spectrum with depth.

Source

Now, color is amazing. Our eyes are amazing. But in the end, we’re talking about wavelengths of light interacting with our retinas. Yet we still need to move beyond the idea that a spectrum is a line in order to appreciate the range of color we experience.

How much more true is that when the spectrums we’re talking about describe PEOPLE? We deserve better than that – both as people who are on various spectrums and people who are thinking in terms of spectrums. Spectrums are incredible, just in general. The spectrum of human experience is vast and in no way linear. Spectrums in general are not linear. Seriously, let’s just ditch the idea of linear spectrums just in general and understand that when we see a spectrum in a linear way, we are seeing a drastically reduced version of it. One that loses all the richness and depth that could – and should – be there.

A side note about physics: Ok, I do understand that specifically in the science of physics, “spectrum” is a specific term that IS, in fact, linear. It is intended to be reductive in that it is also understood that a spectrum is showing the range of one specific thing. Important to note – there is no single scale or range to measure that defines autism – there are many facets and factors involved. We can either stop calling autism a spectrum entirely, or allow our concept of spectrums to grow. So too in color theory, where people refer to hue, lightness, and saturation – all of which could be shown on their own, individual, linear spectrum. Put them all together into the more colloquial idea of spectrum, and you get a colorcube. 

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