Tag Archives: personal

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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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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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.

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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?

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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.

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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?

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The Dunning-Kruger Effect

So I do a lot of thinking about my social skills. I think about where they are now, I think about where they were in the past, I think about what I want to learn and where I hope I’ll be in the future.

One thing I notice when I look back is that I seem to have been subject to the Dunning-Kruger effect rather a lot.

So before I go further, let’s talk a little bit about what that actually is. Basically, it’s a form of cognitive bias where a person is both really terrible at something, while simultaneously being unaware of how terrible they are at that thing, even to the point of thinking they are good at it.

Apparently there are four main points in play here. Basically, someone who is really incompetent at something will often:

  1. fail to recognize their own lack of skill
  2. fail to recognize genuine skill in others
  3. fail to recognize the extremity of their inadequacy
  4. recognize and acknowledge their own lack of skill, IF they have been exposed to training for that skill

And… yep. That’s me in a nutshell, at least when it comes to social skills. In the past, I honestly had no idea I was so clueless in my ability to socialize, related to others, make conversation, etc. I even, at times, thought I was good at it (I wasn’t. oh gods, I really really wasn’t). I am increasingly finding that the more I learn, the more aware I become of being so utterly clueless, at least of anything beyond the basics.

I am sufficiently clueless that I don’t even know what good social skills actually look like. I mean, I can see some people are obviously socially successful, but I don’t know how to learn from their example or apply whatever they are doing to my own life. I cannot differentiate between good advice and bad advice. Socially speaking, I am extremely vulnerable and I always have been, just because of how much I don’t know. Sometimes I worry about being taken advantage of, because as soon as I am criticized in a social arena I will back off and apologize, no matter what. Because often, I did fuck up somehow and I just don’t know how. But it means that there could be times where I don’t fuck up, where someone else fucked up, and they can blame me anyways because I don’t know the difference. This is something that worries me, because I cannot make myself any less vulnerable than I am.

That it is so possible, so probable, so be so clueless of my own lack of skill really does worry me. So now I try to offset this effect by being as aware as possible of my own incompetence. It’s a lot easier to learn when I know I have a lot to learn and can remain open to said learning.

I’m honestly hoping at least a few of you will be able to relate to all this. And if you can’t, remember that this Dunning-Kruger effect is actually a thing. Which is to say, try to be patient with me, and maybe with others who are like me. I am trying, but it’s super hard.

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All About Me, Part III

Me, very young.

Ok, final set of 12! Overall I would say these were the most difficult to answer. In fact, a few of them required some honest soul-searching before I could come up with the right words. I am so glad I was able to do this in my own time, instead of in person with lots of pressure to answer things right away.

  1. Make three true “we” statements each. For instance, “We are both in this room feeling … “

Ok, all my readers are my partner for this one. You can make your own “we” statements in the comments (and that would be awesome!).

We are all reading this blog right now.
We care about autism, mental illness, or disability enough to read or write about it.
We are mammals.

  1. Complete this sentence: “I wish I had someone with whom I could share … “

I wish I had someone with whom I could share crafting knowledge. I could teach what I know, and they would teach what they know, and we would both come out with more crafting power!

Actually, I kinda already do, but more would always be nice.

  1. If you were going to become a close friend with your partner, please share what would be important for him or her to know.

Much of this is on my blog already, but here goes. Anyone who is going to be a close friend of mine should know any number of things about me:

I struggle with depression and anxiety, and am much better with them medicated.
I always have cat hair on me. ALWAYS.
I am on the autism spectrum.
I am pagan.
I am androgynous.

  1. Tell your partner what you like about them; be very honest this time, saying things that you might not say to someone you’ve just met.

This is a tough one. My “partner” in this is all of you, and we’re not actually interacting as I’m writing this. Though really, how would you do this with a stranger, either? I guess you could reference the answers they gave to the various previous questions.

  1. Share with your partner an embarrassing moment in your life.

Just for the record, I am really glad I am writing these ahead of time instead of trying to answer them with a partner right on the spur of the moment. I do my best to forget my embarrassing moments, it’s not super easy to deliberately remember one.

Going with my usual thing of answering conceptually rather than specifically – I am very clumsy. *Very* clumsy. I am forever damaging myself by walking into walls, clunking my arms, legs, elbows, toes, hands, etc into anything that happens to be around.

I recently had a fairly embarrassing injury that involved walking into a wall (I was trying to go through a door, but I missed) while I was rubbing my hand through my hair, and my elbow went BANG! It took over a week before I could do things without pain again. All because I missed a doorway.

  1. When did you last cry in front of another person? By yourself?

I last cried by myself the night Genzi died. I was alone in my room, with only my thoughts and feelings to accompany me and nothing to occupy myself with. I cried for nearly an hour, getting my pillow all wet.

I recently cried in front of another person one night, when I was feeling the loss of a previous connection particularly acutely.

  1. Tell your partner something that you like about them already.

Wait, wasn’t this question 28? What’s going on?!

  1. What, if anything, is too serious to be joked about?

Rape. Ok, this is a little bit tricky (but not really). It’s ok to make jokes intending to laugh at rape culture, or the way people defend rapists or blame victims, and things like that. It is never ok for rape to be the punchline of a joke, or for rape to be treated like something funny.

The same can be said for any number of other things. You can joke about the surrounding culture, but don’t act like the thing itself is funny. Because it isn’t.

  1. If you were to die this evening with no opportunity to communicate with anyone, what would you most regret not having told someone? Why haven’t you told them yet?

I’ve been thinking about this for days and I’m having trouble coming up with much. I don’t have any secret loves that I have yet to confess or anything like that.

Part of me thinks I might regret not telling my dad about how I was in the hospital last year. He believes that poor people should not have/do not need health insurance, and when I – a poor person who lacks health insurance – wound up in the hospital, I just could not deal with him anymore. Especially given the financial aftermath involved and how utterly awful that was – I just cannot get past his politics of “no, let’s totally NOT insure all Americans” nor can I just “agree to disagree” because my own life and health are at stake here. I don’t tell him because I know it would wind up being more about my own anger and feelings of betrayal than any sort of reconciling, and I just can’t imagine any good coming from it. I don’t think he’ll change his mind, I am entirely uninterested in being the special exception among poor Americans, I am certainly not going to change *my* mind, and I’m pretty sure I would just end up even more hurt and angry than I already am. But if I died, and were capable of feeling regret after death, it’s possible I might regret not trying. I’m not sure.

  1. Your house, containing everything you own, catches fire. After saving your loved ones and pets, you have time to safely make a final dash to save any one item. What would it be? Why?

Hmm. My important documents are in a fire-proof safe, so I guess I won’t worry about those. We’ll say that my wallet is on me at the time, so I won’t worry about that either. In which case, I think that I would save my computer. It is hugely important in my life, is one of my primary vectors for communicating with the world at large, and contains many pictures and other things that I would not want to use. My back-ups are also in the house, so they would get burned up too, so it’s definitely worth saving the computer.

  1. Of all the people in your family, whose death would you find most disturbing? Why?

My mom or my brother. Both are people I’ve been slowly reconnecting with, mostly via phone calls which is not the best way for me to do things like that. They are both very far away from me which further complicates matters. I would be really sad that we never really managed to be closer.

  1. Share a personal problem and ask your partner’s advice on how he or she might handle it. Also, ask your partner to reflect back to you how you seem to be feeling about the problem you have chosen.

Ok.  A personal problem that is not completely private that I am open to advice on. This is a toughie. Let me think about this…

Actually, I’ve been talking a lot in this series of posts about my crummy relationship with my dad. Now, there is a lot more backstory involved than I’ve gotten into, but I am quite interested in outside perspective and “what would you do” feedback specifically about the hospitalization and insurance thing that lead to my refusing to speak to him anymore.

And there you have it. All 36 questions, so hopefully now you know (and like?) me better than you did before. Once again, I would super love it if you answered any of these yourself. Or even left your own problem that you would like my, or other commenters, perspective on.

Part I

Part II

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Conversation via templates

Something I hear sometimes from people on the autism spectrum is the idea that conversation is difficult. It isn’t universal or anything, but there does seem to be a bit of a trend that even those of us who are verbal and can express ourselves with words may not have an easy time with conversation (or in some instances, may not be able to converse at all).

I am one who has difficulty with conversation. It isn’t impossible for me or anything, but it took me a while and I’ve gone through a number of tools to try to help make it easier, some of which have worked better than others.

When I was younger I used scripts a lot. Not in the conventional autistic sense of having certain scripts that we like to use over and over and over again, but in that I would try to write out my conversations ahead of time so that I would be able to know what to say. This worked very poorly because no one ever followed their lines. Of course, I also did not tell people what their lines were, but I was pretty much always surprised when the conversation did not go the direction I had planned. Then I tended to wind up confused and caught off-guard, and didn’t know how to proceed. Sometimes my various thoughts would get all scattered, as though my script was the framework holding them in logical order and when the script failed, so did the logical order. How can I say the things I want to say when they aren’t in order anymore?

Clearly, I needed to find a better way to do conversations. Especially conversations that I was going into with Things I Wanted to Say. People often liked to tell me to just “go with the flow” which was very not helpful for me. Just winging conversations might work, sometimes, but it could just as easily (if not more so) leave me panicky and floundering in confusion. So what else to do?

I wound up settling on templates, which for me are distinct from scripts and do not have the particular pitfalls that trying to script my conversations beforehand do. One of my most basic, foundational templates is the ‘taking turns’ template. I say something, then you say something, then I say something, then you say something, etc. Ideally, we each listen to what the other person said respond to it or build on it in some way. This can be a good baseline for one-on-one conversations, but it does not translate to groups at all, and is no good for people who do not follow that basic, turn-taking formula. And in those situations, I am still stumped. It is yet another reason why groups leave me bewildered, and I cannot handle conversing with people who do things like regularly interrupt.

I have other, more specific, templates as well. For instance, the “small talk” template. Small talk is one of those things that I do not understand the importance of, but recognize that interaction goes better if I play the small talk game at least a little. I don’t need to have some deep understanding of it in order to participate.

When I need to make a phone call or talk to someone when I know I need to communicate certain things, I will often create a template for that conversation. Scripting was a way for me to order the things I had to say, and give myself a way to say them. Now, I do something kind of similar, but with flexibility built in. My usual solution is to take out a notebook and jot down all the things I know I want to say or ask about, as well as my answers to questions they are likely to ask. Even to the point of writing down my phone number so I can reference it if it’s asked for, just to make sure I don’t freeze or have a long, awkward pause while I try to grab that information. Because when it comes down to it, I have a really hard time accessing information in my memory while I am trying to navigate interacting with a person I don’t know. So to deal with that, I try to make sure there isn’t much I need to remember – instead, it’s all on the paper in front of me.

Then I can reference what I wrote, mark off what I’ve gotten to, and make sure I don’t leave things out. When things don’t go in order (and they never, ever do) I don’t risk forgetting something important, nor do I wind up so flustered that I can’t go forward.

Overall, using templates to help me talk to people has been immensely helpful. While it isn’t a perfect solution by any means, it’s the best idea I’ve had so far and it does what I need it to do.

Do you have difficulty with conversations or phone calls or such things? If so, what tools do you use to manage them?

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How empathy works for me

Picture by geofones on flickr

Empathy seems to be a fairly popular topic amongst autism bloggers, for reasons which include certain autism “experts” and their opinions on the matter, and certain unfriendly ways that autism is depicted in the media. I’ve written once before about problems in how we use the word and all the things it can mean, but I have yet to opine on autism and empathy directly. I am still solidly in the stage of thinking through how it all works for me and am not prepared to make broader statements about empathy and autism, but I can certainly blog about myself easily enough.

So I pose the question to myself: just how does empathy work for me? Rather predictably, the answer is not short and simple simply because empathy seems to mean so very many different things.

The simplest version is the ability to read facial expressions. I’ll be honest, I’m not so great at that. I can determine basic expressions, like smiles and frowns and furrowed brows, but I often seem to miss subtleties. The way I once put it is that when seeing cues and such from other people, I will often see 2+2=4. Unfortunately, it may have actually been 2.3+2.7=5 and I simply could not see that .3 and .7, so my conclusion was off. So this is definitely an area where it could be said that I struggle with empathy.

If empathy is about caring about the feelings of others, than I have no real problems. I care about people a lot. A whole lot. I am not always particularly good at expressing it (actually, I am often quite poor at it, sadly) and I rarely know what to do in response, but I do care. If empathy means caring, then I am quite empathic. On the other hand, if empathy means knowing what to do, then I am not particularly empathic at all.

If empathy means feeling what other people feel then… actually, this one is tricky. I’m not sure. I do not seem to automatically feel what people around me are feeling; at least not all the time. I can and do, however, imagine myself in the place of someone else, and imagine what I would feel were I in their position. This is not an infallible method, though, as what I feel is not always going to be what other people will feel. Of course, it’s not infallible for other people either, and I have had multiple unfortunate encounters with neurotypical people who seem to use this method, but got tripped up when I turned out to be different from them. It does not appear to be only autistic people who struggle with empathy in that way, it’s just that neurotypical people have the privilege of knowing that most people will respond to input similarly to themselves, while autistic people tend to be very much different. That said, I am able to see the world from the perspective of other people; I just have to work at it a bit. So I guess my answer to this one is “sort of” but I am more aware of it’s shortcomings than many neurotypical people.

There is another area that is rather more woo-like, so I’m a little bit hesitant to write about it. That being – that I feel the presence of other people as pressure. Attention of a person is even more pressure, like standing in a stream of water. When I’m in public, I feel all the people around me as though they are pushing on me. This was actually a significant problem when I was younger, and I spent years trying to figure out how to build walls around me to keep that pressure at bay, with mixed success. That feeling of pressure from people around may or may not actually convey useful information to me, and the amount and type of pressure can vary wildly from person to person and situation to situation. If I’m not careful, it can be overwhelming (and sometimes is even if I am careful). I have no idea if this would qualify as a form of empathy or not, or even if many people would be inclined to believe me. Nonetheless, there it is, and it is definitely one of the reasons I pull away from groups and crowds, and sometimes even individuals. It can get intense.

So if a person were to ask me if I experience empathy, the simplest answer would be yes, but after that I would need to ask them precisely what they mean by empathy. It is not actually a simple word.

To anyone who feels like answering a question: how would you say that empathy works for you?

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