Tag Archives: opinion

5 Simple Driving Tips

Ages and ages ago I wrote out a few simple driving tips for myself and people who (like me) are maybe not super comfortable driving. I then proceeded to not post or share it anywhere. Well, largely due to… ::gestures at everything:: … I’ve barely driven at all in over a year. What little comfort I had with driving is now long gone, which means I’m going back and reviewing those old tips. So I figured I might as well post them here as well.

  1. Keep as many things as possible “always” or “never.”

When I was growing up, my dad had this fairly complicated set of personal rules he used for whether or not he was going to use his turn signal, that even he couldn’t keep up with. I’d write it out to share, but seriously, it was a lot. Having that complicated ruleset was, I think, was not actually good. 

There is a lot of multitasking in driving, and part of being autistic for me is that I am bad at multitasking. So I reduce what I need to think about by simplifying what I can. If I’m turning, I ALWAYS use my turn signal. Even if I’m in a parking lot, even if I’m turning into my driveway on my tiny little road and no one else is around. Always use it, so that I don’t have to process whether or not to use it, which would be far more complicated for me and take much longer.

Of course, that one is obvious, because you’re supposed to always use your turn signal anyway. Some others I have are

  • Never pass someone who is driving in front of me
  • I am never in a hurry
  • Always drive with my right foot (another legal one, but I’ve seen people break it).

2. Stick to a routine as much as you can.

I need routines. I also like routines. What other people call ruts, I call comfort. But really, sticking with a routine helps keep me stable and functional. It’s a thing.

I keep my driving in a routine as much as I can too. Which, in my case, mostly means doing the grocery shopping on wednesdays. I do my driving on the same days, at roughly the same times, for the same tasks, going to the same place, every single time.

3. If you have to break the routine, plan ahead as much as possible.

Some people do impromptu stuff. Some people like being spontaneous and just… going places. I am not one of those people. If I am going to have to do something that is not part of my weekly routine, such as taking my cat to the vet, I try to plan it out as much as possible. Yeah, I’ll be driving outside of my routine, but I’ll know it’s coming, I know the route, and I’m not surprised by it.

4. Find routes you are comfortable with.

There’s still a lot about driving that really stress me out. Things like highways and merging. One thing that is a huge deal to me is planning out my route to be as comfortable as possible. Again with grocery shopping – there were two routes to the grocery store that I could take. I was fully capable of driving either of them (and had done so, when I had to), but I was much MUCH more comfortable with one of them than the other. So that is the one I made sure to learn as well as possible, and is the one I used.

5. Keep extra spoons in your pocket – and be prepared to use them.

Sometimes a road will be closed. Maybe a tree fell right across the road and now you can’t go. Sometimes the store might turn out to be closed. Sometimes something will go wrong with your car. The point is – stuff goes wrong. Do your best to be prepared for contingencies, plan out possibilities as you think of them, and be ready for stuff to go wrong. Because once in a while, it will.

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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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What is society for?

Humans, nearly universally, live in societies. We get together and live cooperatively and interdependently. Humans are profoundly social animals; it’s our primary survival strategy. There are a number of benefits this confers such as skill specialization, resource sharing, and cooperative breeding, but I really want to focus on the disabled aspect of this. What is society for in terms of disabled people?

I think that people have two wildly differing ideas regarding what society is for, and that is where a lot of conflict comes in around how to care for disabled people (or, and this is terrible even to say, whether to care for disabled people at all). Personally, I call these ideas the goose model and the wolf model.

So ages and ages ago, I lived on a sheep farm for around a year. That sheep farm happened to have a flock of geese that lived there too. Those geese had pretty easy lives. Food and water was plentiful, shelter was close at hand, and the dogs made sure that they didn’t really have to contend with predators. Nonetheless, geese will always be geese. Geese are also social animals, preferring to hang out together in a flock (with the exception of breeding season, but anyway). However, they do not in any way take care of each other while they are in this flock. I got to witness one goose get sick (not terribly sick. Like a goose cold or something) and the rest of the flock turned out that goose absolutely viciously. They drove it out, wouldn’t let it get close, and closed ranks against it. That poor goose tried incredibly hard to be as close to the flock as they would let it get, and otherwise just tried to spend it’s time hiding since it was alone and didn’t have the safety of its flock.

To the geese, the group is about protection from predators and a hostile world. Even if the world they live in isn’t actually hostile, that’s still what the group is for. A weak member of the group drags everyone down, and thus is undesirable. This is what I call the “goose model.” This idea of society is fear-based, constantly worried about attack from outside threats, and considers it best to get rid of anything that might be seen as “weakness.” 

(Disclaimer: I don’t know if all geese act like that or just the breed that I was around, which I believe was a particularly vicious kind of goose. Regardless, it’s still where I got my metaphor for this part of my model)

Then there’s the wolf model. Wolves also live in groups, but their treatment of the sick or injured or weak is wildly different from what I saw in those geese. Wolves actually care for their weaker pack members. The weak, the injured, the sick, the elderly, the disabled – the rest of the pack takes care of them. I’ve seen this behavior in cats as well. Cats are not as aggressively social as wolves or humans are, but they still can form bonds with each other and I’m sure we’ve all seen stories about a cat taking care of an injured friend or refusing to leave an injured cat’s side. 

In this model, a society is for taking care of each other. The strength of the group comes from the assurance that the members will always take care of each other. There is no need to judge anyone’s individual contribution – we’re a family, and family takes care of family. 

It probably goes without saying that I am in the wolf model camp. Humans are cooperative and interdependent, and I strongly believe that our strength comes from taking care of each other. It’s about the entire group lifting each other up, and everyone being better off because of it. It’s about recognizing that everyone deserves to live and thrive regardless of what they may struggle with.

As far as I can tell, human societies have been all over the board in regards to how they treated the sick or disabled. Since I’m not actually trying to write a term paper here, I chose to not dive into that mire. I did, however, find some interesting articles about prehistoric societies. Apparently there is a growing body of evidence that prehistoric societies also took care of their sick, injured, etc. Here is an article going over a few cases of archaeological finds showing disabled individuals thousands of years ago, living far longer than they would have been able to on their own. They absolutely had to have been taken care of – meaning the people around them did exactly that. It seems that at least some ancient humans viewed the role of society as being for taking care of each other. 

Personally, I think that’s pretty cool.

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Ramble on Stimming

This post might be a bit unfocused. We’ll see how this goes.

I’ve seen some disagreement in some of the autistic spaces I’m in around the idea of “stimming is communication.” Apparently some of us are really against that idea. It’s rather made me want to weigh in with my take on the matter.

And my take is – stimming is communication, in the same way that other forms of body language are communication. Some of the arguments against stimming being communication is that sometimes (or many times, or often) stimming is done without the intent to communicate. Apparently to some people, that means it’s not communication.

I disagree. Humans communicate all the time without necessarily putting intent behind it. Over on the neurotypical side, people generally agree that body language is communication. And sometimes NTs will put deliberate effort into their body language, so that it communicates something that they choose. However, many times body language just happens, without forethought explicit choices involved. And when that happens, it’s still communication. NTs like to talk about how up to 75% of communication is nonverbal – and they’re meaning that for themselves. Their own communication is dominated by nonverbal cues. Facial expressions, body language, tone, things like that.

I am firmly of the opinion that stimming is (among other things) body language. When an NT laughs, they are probably not thinking “I wish to communicate my amusement, so I am going to make this particular sound to convey it.” Laughing is simply a natural result of amusement. Same with stimming. Whether I’m flapping my hands because I’m excited or rocking because I’m overstimulated, they are natural results of my mental state. They are also expressions of my mental state, and, among the various things they do, they serve to communicate that to others.

When I say that stimming is communication, one of the things I mean is that NTs should learn to pay the same kind of attention to it that they do to other forms of body language. I am saying that all behavior is communication, and stimming counts too. I’m saying that stimming is another form of body language, and that is one of many many reasons why we should stop trying to stamp it out.

When I stim, I am generally not thinking about communication. I’m excited or happy or stressed or overstimulated or maybe just needing to rock. Frequently I’m alone, so communication doesn’t make any sense. However, I still say that stimming is communication, the same way that facial expressions are communication. I say this because intent or not, they can communicate information to others, if there are others around who know how to read it.

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That sympathy vs. empathy video

Ok, so I finally watched that video that I’ve been seeing everywhere.

Here it is, by the way:

I’ve been a little trepidatious about it because I was worried it would approach empathy and sympathy in a way that I find icky.

I was right.

So ok, the video made some really good points. The actions they are labeling as “sympathy” really are harmful actions that lots of people engage in, but shouldn’t. It’s true that people shouldn’t try to make it better or point out a silver lining or similar sorts of things.

Regarding empathy, I also agree that it’s true that people should do their best to be with you in your dark place. I mean, I wrote about this.

But then there was that part when Bear goes down into the hole where Fox is, and says “I know what it’s like down here.” And the video lost me right there. I HATE it when people claim they understand. Really. It’s awful. Because most of the time they DON’T understand. Not really. When Bear joins Fox in the dark hole, he’s being a good friend. He’s joining the fox and sharing his experience. That’s awesome. But Bear has a ladder. And a lightswitch. And went down there of his own free will, while Fox had the ground just fall away. And that FUNDAMENTALLY changes the equation. It’s like spending a day in a wheelchair and then claiming to totally understand what it’s like needing a mobility aid all the time. You may be able to temporarily share the experience, but you can always leave it behind and go back to your life where all this, whatever “this” is, is not a thing. Honestly, I really hope you get why this is not a good thing. When you have power over your circumstances, and you can leave whenever you want, it is not the same as it is for a person who is stuck there.

Now, maybe at some point in the past Bear had a similar experience. Maybe he was in a hole with no ladder or lightswitch, and can draw on that memory to have an idea of what the fox is going through. But even then, his experience was different because it was HIS EXPERIENCE, and not Fox’s experience.

Then there was “Ooh… um… want a sandwich” Giraffe. Another thing I’ve talked about over on my blog is the fact that we CANNOT assume that a person’s ability to express themselves is equivalent to a person’s ability to think. Or feel. For all we know, “want a sandwich” lady is, in fact, feeling all of those empathy feelings. She could very well be struck deeply by what was shared, and care a lot. And maybe she just doesn’t know where to go from there, and out comes something awkward. I know I’ve been in that position. I’m sure lots of people on the spectrum have been in that position (look up autism and hyper-empathy if you want to read more on that). All that video did was demonize the awkwardness, and push a bunch of assumptions about her connection or lack thereof based on a few words. So not cool.

Though I also want to add – maybe that wasn’t awkwardness at all. Sometimes when I’m getting really wobbly, a sandwich is exactly what I need, and my bf has “check to see if she’s eaten” high on his list of things to look at if I’m doing badly. And in some situations – not all of them, but some – doing some “at least’s” can be helpful in terms of perspective taking. I mean, if a person is struggling with depression, they might lose perspective. Their time horizon might be really short (this happens to me). For those people, in those situations, giving some perspective can be VERY useful.

I actually like to use the word sympathy (or similar) in these situations. Because I’m not going to go claiming I understand, as though my experiences are the same as someone else’s. They aren’t. So I can say “I have been through something similar and I can sympathize with your experience. I know how much it sucks. I am here for you, and I care.”

But then, maybe I haven’t been in a similar hole. I’ve never personally experienced racism. Occasional bigotry, sure. Sexism, definitely. Ableism and… um… mental-illnessism, totally. But racism? Nope. My ability to understand the experiences of a person who is experiencing racism is far far less than my ability to understand the experiences of another autistic person, or another person who deals with depression or anxiety. I can, however, draw on my own experiences of oppression, believe their experiences, and connect that way. All the while admitting that no, I don’t really understand. I can’t really understand. I can believe, I can sympathize (yep, the dirty word again!), I can care, and to whatever degree I can attempt to connect, but that’s pretty much as far as it goes. I also like it on the other end. The first comment in this here post started with the commenter sympathizing with me, and it was exactly right. It was wonderful. Sympathy is NOT some icky thing embodying harmful behaviors.

So yeah. This video bothered me. I agreed with most (though definitely not all) of the commentary on the basic behaviors, but I hate how it used the word “sympathy” as something dirty and bad. I also hate that it’s supposed to be good to claim to understand. Plus, the fact that it contrasted one person’s actions to another person’s feelings was rather problematic.

People sometimes claim to understand me. They usually don’t. They are drawing from their own experiences – which are different from mine – and then trying to make a connection. Which is fine and good, but it usually comes with assuming that my experiences are like theirs. Which they aren’t. So yes, connect with me. Yes, bring up similar experiences that lead you to be able to sympathize with me. But STOP saying you understand.

Finally – that video never did stop to mention, even briefly, the idea of just checking in with the person to see what THEY need or want. I hate it when people say “I understand.” Maybe someone else loves it. Asking me if I need a sandwich can be incredibly helpful to me, but maybe someone else would find it insulting. Some people find assistance getting perspective really helpful. Other people do not. There is no one right answer, and just finding out from the person in question what they need should be considered very important. That the video didn’t even bother to mention it was downright disturbing.

If that’s what empathy is – pretending to understand when you honestly don’t, and doing what you think is “empathic” rather than actually checking in with the person – I want no part of it.

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OneRightAnswerItis

There is a condition I want to warn you all about. It’s as old as humanity – for as long as people have had a concept of answers, there’s been a concept of right answers. And as long as there’s been a concept of right answers, there’s been OneRightAnswerItis, or ORAI.

What is OneRightAnswerItis, you ask? Well, let me tell you about it!

What is OneRightAnswerItis?

ORAI is characterized by a person’s narrow, limited thinking that any problem can only have one solution, any question can only have one answer, that there is only ever one right choice. ORAI is usually accompanied by an odd lack of confidence around one’s own choices. A person suffering from ORAI will feel personally challenged or attacked whenever someone makes a different choice than they made. Even more so if the different choice was the result of significant thought, or if the different choice had a positive outcome. This is because they believe there is only one right answer, and if someone else’s choice was good or correct, it must mean that their choice was bad or wrong. ORAI seems to make a person blind to nuance, context, and the simple truth that different things work for different people.

What are the symptoms and warning signs of OneRightAnswerItis?

ORAI expresses itself through speech and behavior. A few examples would be:

Responding defensively if you decide to not do a thing that they do. “Why, is my way not good enough for you?”

Insisting that you try the things that worked for them, regardless of context, personal history, or actual need.

Confusion and denial when presented with the idea that different people have different needs with different solutions.

ORAI can also be insidious, and is rarely presented universally in any person. ORAI is very common when it comes to religious choices, yet very rare in regards to job choices. A person can be very open-minded to multiple choices when it comes to treating the flu, yet present severe ORAI when it comes to treating or helping autistic people.

I think I or a loved one might have OneRightAnswerItis!

Not to worry! ORAI is very treatable and with the right approach can be eliminated! The first step to treating ORAI is by far the most difficult – recognizing that you have it. Unfortunately, ORAI comes with firm (if oddly fragile) conviction of one’s own rightness, so it can be easy to say “oh, I don’t have ORAI, I really AM right!”

However, if you see other people making different choices than you are, and doing so with apparent forethought, consider that maybe they are also right. Consider that maybe there are actually multiple right answers.

The underlying emotional triggers to ORAI will stick around even after admitting the problem, but they are much easier to address when you recognize it. After that it’s a matter of learning to feel good about your own choices because they were right for you – not because other answers or other people are wrong or bad. Some people can find this a difficult way to think, but it is very rewarding once achieved.

Be on the lookout for OneRightAnswerItis. It can be a sneaky thing, but it is very disruptive when it takes root.

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Temple Grandin

I recently went to a talk by Temple Grandin while she was in my city. There seem to be many divided opinions about her, but I found the talk interesting enough to talk a bit about my impressions of her.

I have seen some people accuse her of being ablist, because of her focus on getting autistic people working. I am not entirely sure where I stand on this issue, but my sympathies are leaning towards Temple, despite my own lack of a job. Her attitude is, basically, that being on the autism spectrum is not a good enough reason to not work. The basic stance she seems to take on the matter is that a person should find A Thing that they can do, and make a job or career out of doing that Thing. Yes, sometimes it will be boring and just work, but other times it will be awesome, and the more you do it the more likely it will be that you will get to do the awesome.

She talked a little bit about the need for accommodations, though I would have liked more focus on how to get those accommodations in when dealing with bosses who think you are simply being unreasonable, or in the face of disbelief or uncooperativeness. As far as I can tell, she definitely believes that accommodations should happen to make it possible to work, but she did not say anything about how to actually get them.

Interestingly (to me), she rather explicitly stated that simply opting out of office politics or work social events or such things is a definite option for those of us who simply cannot handle it. That we should be able to do Our Thing, and not worry so much about chatting by the water cooler. In theory, I definitely agree with her. However, I would have liked to see an acknowledgement of the impact refraining from politics and socializing can have on a person’s career, and some talk on how to deal with that.

I was off in a side room for this talk (which, by the way, was awesome. I am so glad that divided people up like that, so I had to deal with a minimum of crowds of people), but if I had been in the main room she was in and had processed quickly enough to come up with questions on the spot, I think there are some questions I would have wanted to ask her:

Having a job consisting of The Thing that I do is a great thought, but how can I do that while dealing with a world in which jobs are increasingly generalized, asking people to do a wide variety of tasks? Specialization seems to be becoming less and less of a thing, at least in terms of hiring.

What is the best way to ask for accommodations, especially if one is dealing with unsympathetic bosses or coworkers?

How should we navigate opting out of socialization and office politics in a world that is demanding so much networking and socialization in jobs?

Moving back into my own impressions, she also stressed the importance of getting children talking as early as possible. I’m honestly not sure I agree with that one. I definitely believe finding a way for children to communicate as early as possible is important, and I can see the argument that talking is the method of communication that most people are familiar and comfortable with, but I think things like tablets or typing  or picture boards and such are also viable options. I am inclined to say that speech should be our first choice, but it should not be the only option. However, while I see people accuse Grandin of focusing on speech to the exclusion of other things, when I looked at her website to find verification, I instead found encouragement to find some way, any way, to communicate. “If a non-verbal child is frustrated because he/she cannot communicate, he/she should be given a means to communicate, such as a picture board or picture exchange.  There are many new apps available for iPads and other tablets for communication.” So perhaps I took her encouragement to speech in her talk too literally.

More generally, she used gestures while speaking far more than I was expecting. That actually threw me for a loop at first. She quite direct in how she spoke, but she still spoke with quite a lot of humor. I noticed that she touched and smoothed her hair rather often, and she also frequently touched her face around her eyes. I found myself wondering if those gestures were a stim for her.

I also took note of a few points of how she spoke. When I watched Temple Grandin, the movie, with commentary on I noticed that her speech sounded rather stilted and almost a little forced. Her speech was smoother in her talk than I remembered from the movie. From both the movie and from the talk I noticed that Temple seems to have various phrases and sentences that she says the exact same way, word for word, every time she says them. I realized that I am accustomed to people finding new ways to say the same things, but not Temple. It gave me the impression that she makes some limited use of scripts in her formulation of sentences. Finally, when she answered people’s questions, it seemed to me that she often did not actually answer the question that had been asked, but answered something related to the topic that had been asked about. That lead me to speculate if it might be related to her extreme visual-based thinking, and if the answers she gave were more about the images the questions put in her head, rather than about the literal interpretation of the words said. Similarly, I noticed that sometimes when answering questions her answers drifted a bit, in an associative kind of way.

Overall, I found the talk interesting and I am very glad I went. My general impressions are positive, but I do wish she spoke in more depth about some things, with more acknowledgement of how much of the world I live in does not seem open to her solutions and some talk about how to deal with that, and the intersections between autism and other issues.. Still, I think I’d be interested in going to another of her talks if she’s ever in my city again.

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Lieutenant Barclay

Lieutenant Reginald “Reg” Barclay

Fair warning – I am about to get my geek on and talk about Star Trek yet again. What can I say, I like Trek.

Not too long ago I read an article on startrek.com that was Jordan Hoffman’s rather negative take on the character Lt. Reginald ‘Reg’ Barclay III, or just Barclay for short. For those of you who perhaps aren’t quite so obsessed with Star Trek (ST) as I am, Barclay was a character first introduced in the Star Trek: The Next Generation episode Hollow Pursuits. Barclay is a very different sort of fellow from what we had gotten used to in ST. Unlike the legions of perfect people, Barclay is flawed. He is shy, he is anxious, he has phobias. He is awkward, he stumbles over his words, he is deeply unsure of himself especially in terms of interacting with other people.

Hoffman views the Barclay character as a Mary Sue; not as an authors wish fulfillment character, but as the writer’s idea of what sort of character ST fans could or would relate to. “whether it was true or not, the whole endeavor seemed like a network exec was making fun of me. By which I mean us – the Star Trek fans. “Oh, those dweebs who never get picked for the soccer team, man, they’re gonna’ love this guy. A holodeck addiction? He’s one of them!” “ He views Barclay as an insult – especially early Barclay, in his first introduction.

As will probably come as no surprise, my take is rather different. Though I will initially admit – I could, right away, identify with Barclay and his troubles. I, too, am shy and anxious and awkward.

A good, though brief, explanation of some of Barclay’s troubles, and mine, can be found in a conversation Barclay has with Chief Engineer Geordi LaForge:

BARCLAY: Being afraid all of the time, of forgetting somebody’s name, not, not knowing… what to do with your hands. I mean, I, I am the guy who writes down things to remember to say when there’s a party. And then, when he finally gets there, he winds up alone, in the corner, trying to look comfortable examining a potted plant.
GEORDI: You’re just shy, Barclay.
BARCLAY: Just shy… Sounds like nothing serious – doesn’t it? You can’t know.

I know what it’s like to feel those things, and I know what it’s like to have people judge me for them. While he was certainly a rather extreme characterization of these things, it was still nice to see something like this amidst all the hordes of Perfect People we had gotten so far. This is a point I will return to later.

Hoffman comments, regarding the first time he saw Hollow Pursuits, “I instantly knew that the episode was going to end by, basically, everyone giving Barclay a big hug and letting him feel good about himself.” While the episode can certainly be viewed that way, I see it as an over simplification. Throughout the episode we also follow the rest of the crew and how they react to Barclay. Mostly, the react with derision and mockery. They call him “Broccoli” behind his back and at one point, Captain Picard accidentally does so to his face. Clearly, no one knows what to do with this guy, so they treat him as beneath them. As lesser, as unworthy of the basic respect and decency they extend to everyone else. If we are going to talk about character flaws, that sort of behavior definitely qualifies. They are being cruel and at some points, outright bullying.

Much of the episode is also, therefore, devoted to various members of the crew needing to overcome their own prejudices, and learn to look at other people with more compassion and empathy. This is shown beautifully in a conversation that takes place between Guinan, the ship’s bartender/listener and the aforementioned Geordi. (If you’re feeling particularly obsessive, you can read the entire conversation here, scroll down to section 14A)

GEORDI: Maybe I didn’t make myself clear… Barclay, he’s always late… he’s nervous… nobody wants to be around him…
GUINAN: If I had the feeling that nobody wanted to be around me, I’d probably be late and nervous too.
GEORDI: *frowns* Guinan, that’s not the point…
GUINAN: Are you sure?

I think that particular bit of conversation really exemplifies what is going on here. Geordi is looking for reasons to judge Barclay. To take his personal dislike of the man and make it “right” and that Barclay is “wrong,” and Guinan is pointing out the problems with that. So while the episode certainly did show Barclay struggling with and overcoming certain select parts of his own issues, it also shows his crewmates struggling with their own biases and reactions to him. And yes, the episode does end with the crew basically giving Barclay a big hug, but the journey to get there took place on both sides and everyone, even the esteemed Captain Picard, had to take a look at themselves and see the harm that they were doing.

Overall, I like this look at anxiety and social awkwardness. I like the open admission that the blame cannot fall entirely on the person who is anxious, that it is only good and right to meet people halfway, and that even “perfect” people can have prejudices that they need to overcome.

And speaking of Perfect People, at the end of the episode Barclay has made steps forward, but he is not “fixed.” He stays anxious and shy and awkward, and while he matures and improves throughout his future appearances on The Next Generation and Voyager, he is always different and somewhat apart from everyone else. He is also, importantly, brilliant at what he does and whether we like it or not, a valuable member of the crew. I appreciate the nod ST gives to the fact that you do not have to be a Perfect Person to be able to meaningfully contribute to society and those around you. You can have a strong society, a strong crew, without it being made up entirely of those Perfect People. There is room for all of us, and we do not necessarily have to be forced to Be Like Everyone Else.

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labels, yet again

stock image by littledarksprite on deviantart

Will I ever be done with talking about labels? Probably not.

I want to talk about the autism vs. aspergers label again. I did once before, mostly to talk some about the arguments in favor of everyone on the spectrum calling themselves autistic, and why I disagreed with those arguments. Well, I’ve had some more thoughts on one point in particular that I want to get into more.

“They serve to alienate those of us who do not use that kind of terminology, and those who have never received the “Asperger’s” diagnosis, by separating one group of Autistics from another.”

This was one of the arguments that I talked a bit about. Or rather, I admitted that I did not understand what she was saying. I actually still don’t, but I think it might have something to do with solidarity and/or unity. Which is a worthwhile thing, even if I think the logic showed is flawed (assuming I’m interpreting it correctly). I mean, why are those who use the word “Asperger’s” alienating those who use the word “autistic” but not vice versa? It makes no sense to me.

Jumping a bit (you’ll see why soon), one of the discussion questions on the Asperger’s Support Network facebook page was someone asking for opinions regarding merging autism and Asperger’s into a single “autism spectrum disorder” diagnosis in the latest edition of the DSM. I found some of the replies interesting.

I am not happy. Aspergers has a slightly less negative stigmatism[sic] than the word Autism. It may be out of the DSM, but I will continue to use the term. There are a lot of ignorant people out there who are too quick to slap an overly negative label on a child sight unseen once the “a” word (autism) has been used.

 

 This is tragic. I am now 50. When I was in third grade I was diagonsed[sic] with “a touch of Autism” Everyone wigged out over the word Autism. This can not possibly be useful.

So apparently while some people are possibly seeking out a diagnosis of autism for the services they’ll gain access to, other people want to avoid the word due to a stigma attached to it. I find this unfortunate but understandable – people do react in different ways to the different words. I also find it interesting because it’s very different from how I’ve been finding myself thinking about it all.

Confession time – I have been finding myself increasingly wanting to simply call myself “autistic” rather than an aspie. This is not because of any thought-out logical reason, or for reasons of solidarity or to try to avoid alienating those who use the word autistic. No, this is because I keep feeling that I could gain more legitimacy this way. I keep fearing that by using “Asperger’s” people will think that I don’t really need help, or must not really struggle. And there are the “oh, you have Asperger’s? Well, you’re not REALLY autistic” people. Maybe they’re trying to be supportive when they say that, but I just wind up feeling alienated. And even in my tiny corner of the internet, I’ve run into people who tell me that since I’m “only” an aspie, my voice does not really count among autistic voices. So I want to claim the word autism as a way to claim my place. As a way to not be alienated, to legitimize myself, to say “I count too.”

Additionally, I struggle with feeling worthless kind of a lot. Sometimes I wonder if maybe it would be easier if I could claim the label “autistic.” That maybe it would make it easier to say “I have overcome x, y, and z obstacles to get to where I am now and that is awesome” instead of saying “I have not achieved a, b, or c. That is pathetic.” Rationally speaking, it’s fairly unlikely that a simple word change would make an ingrained thought pattern go away. I mean, getting my Asperger’s diagnosis ranks among the most validating events of my entire life, but the thought pattern is still there.

Once again, I do not actually have an answer to any of this. Only thoughts and rambles. I do, however, think that we would be better off if we worked to overcome the stigma of autism, rather than simply avoided the word because it’s ooky or something. Though I say that, but I must also admit that people need to decide for themselves where their energy should go. If someone is using all their energy just to try to get help and overcome whatever obstacles are in their life, I’m not going to judge them if they haven’t any energy left over to combat other people’s prejudices and biases about a word. If they choose to use a less loaded word because it makes their life easier, who am I to tell them that they’re wrong?

Then, of course, there’s this view:

Although my son has Aspergers the specialist put his diagnosis as high functioning autism so he would get easier access to services than with an aspie diagnosis so this should actually really benefit people x

Autism means better services. This is also sad, but unsurprising given the all too prevalent attitude that Asperger’s shouldn’t or doesn’t really count.

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