Tag Archives: sensory

Not a Cure

The cure vs. not cure battle seems to be continuing to rage on. Ages ago I made a post with my take after someone accused me of not needing any kind of help, since I am against being “cured.” It seems that to some people, it’s a binary. Either we’re just fine as we are and don’t need help or treatment, or we need to be cured. The reality is, of course, more nuanced, with different individuals needing different amounts and different types of help and treatment.

So, looking at the cure stuff, it seems that there is a pretty big disconnect between the broader autism community, and how some parents think of it. See, to autistic adults, most of us see autism as an identity. As a neurology. To get rid of the autism is to fundamentally change who we are.

I gather, though, that to some parents of autistic children, they see it differently. See, autism is diagnosed by behavior. While scientists are slowly researching how autistic brains are different from neurotypical brains, it’s still an area that we don’t really understand, and we are very very far away from using that kind of information in diagnosis. Behavior is all we have. So “having autism” is, in a sense, synonymous with “being diagnosable.” Of course, there are problems with that logic, and one of the big ones – the one I am wanting to talk about here – is how some people use it for their idea of “cure.”

Basically, for some parents, “curing” their child only means making them no longer diagnosable. And making them no longer diagnosable means making them get rid of the behavior used for diagnosis. And when I think about that, well, it’s quite distressing.

See, I could probably learn to stop stimming. But it would leave me constantly tense and uncomfortable, it would eliminate a huge part of my body language, and I would have to keep a fairly significant portion of my attention dedicated to preventing stimming. Sure, it would reduce how diagnosable I am, but it would not better my life in any way. Quite the opposite.

If there were enough external pressure, I could probably succumb to not showing my sensory issues. I could choke down food that makes me gag (well… maybe. The gagging can get pretty bad). I could sit in silent agony as clothing tags dug their way into my skin. I could learn to not flinch at painful lights and noises (which, actually I did learn that one a little. It’s not a skill I particularly enjoy, and I am working on getting rid of it).

I could take intensive social skills classes. Which, actually, wouldn’t necessarily be bad. My social skills are way behind other people in my age group, and this is very much an area where I need help. As I’m pretty sure I’ve written about before, my ability to handle parties or similar forms of group socialization is approximately nil. I just can’t do it. So teaching me to handle stuff like that would be good.

On the other hand, not all ways of teaching “social skills” are about bettering an autistic person’s ability to actually interact. Sometimes they are about hiding our weirdness. Things like forcing eye contact regardless of the pain involved. Or forcing us to touch people even if it makes us feel sick or panicked.

So if my childhood had included all that kind of “help,” and somehow I learned to cope with that stuff without more or less constant meltdowns, I might have stopped being diagnosable. But the thing is, I would still be autistic. I simply would have learned how to hide my autism. And it wouldn’t even be able to last long term. As life continues, as the challenges of life increase, it would take more and more effort to maintain the facade. My ability to do anything else would diminish more and more. Eventually, the house of cards would crumble. Inevitably.

Making the autism invisible does not get rid of it. All it does is make it so neurotypicals can happily pretend it isn’t there.

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Museum day

So this sunday I went to the Franklin Institute. I greatly enjoy museums, and a friend of mine had found a leaflet from the museum proclaiming “Sensory-Friendly Sundays.”

The description on the front says, “The Franklin Institute is proud to welcome families, adults, and groups with members on the autism spectrum to Sensory-Friendly Sunday, a day to enjoy the museum in your own way and in your own time. All are welcome!”

I’ll repeat on bit here: “a day to enjoy the museum.”

It only occurs one Sunday every two months, which I thought was kind of dismal, but I was also heartened that they were having sensory-friendly days at all, and I wanted to try it. So on one of the days listed, we went.

Well, we got there in the early afternoon and started poking around. We didn’t see much different about it but weren’t too concerned about that as it was being an enjoyable time. There were various enjoyable things to look at and interact with and it was going fairly well.

Until we got to the electricity section. Then it all went horribly, horribly wrong. It turns out that on the ceiling in the middle of the electricity exhibit there is a fairly large tesla coil. A tesla coil that goes off incredibly loudly, with no warning whatsoever.

We were there in the room, looking at an exhibit, when an incredibly loud, deeply painful ROAR occurred. Nothing was going wrong or was broken (as I first thought must have been happening). Nope, apparently that is just part of the exhibit. No signs warning us of it (at least that I saw), no announcement or notice ahead of time, just a sudden, horrible noise.

Honestly, that pretty much took everything out of me. Once I could feel my limbs again I left the room. And I tried to keep doing the museum, I really did. I didn’t want that to destroy the day. But honestly, I just couldn’t. It had taken too much out of me. It had been too painful. It was not long after that I realized I really had to leave.

Which, of course, brought up the question – what happened to this sensory-friendly day the museum was supposed to be having? A loud, painful noise given without any warning whatsoever, so that no one in the vicinity has a choice whether to be subjected to it or not, is extremely far from sensory-friendly. I would call it downright sensory UNfriendly. Maybe a sensory onslaught.

Before we left we went back into the ticketing area and looked for another copy of the leaflet to look at. A task which proved somewhat difficult, but we eventually found one. Turned out carefully looking over it and reading all the details on the back gave some critical extra information. “Specially adapted exhibits throughout the museum from 8:00 am-12:30pm” (emphasis mine). Now, I will grant you that it is my own fault for not reading the fine print. However, I do not think it’s my own fault for thinking that “day” (as mentioned in their description) actually means “day” rather than simply “morning.” But apparently when they say “day” they mean “morning” and personally, I think I’m justified in being unhappy at their word choice. I find it disingenuous.

Even for an autistic adult there is aftermath to such an event (and if it had happened when I was a child, I can only imagine the meltdown that likely would have resulted). Somehow my friend and I made it back to their apartment despite the fact that I was shutting down and finding it increasingly difficult to walk. I wound up collapsed on my friend’s bed, wearing their noise-cancelling headphones, for I don’t even know how long as I slowly, gradually, came out of my shutdown and became able to deal with the general noise and chaos of the world again.

I also want to mention what my friend was pointing out – while that noise was particularly bad for anyone with sensory difficulties, even neurotypicals would find it bad. As they put it, “It’s just really fucking loud and completely without warning. Most people don’t go to the museum to have the crap scared out of them.”

I am extremely unhappy with the Franklin Institute and think what they did, what they are doing, in the electricity exhibit is wrong on multiple levels. Is it really so impossible for those already rare sensory friendly days to actually be, you know, a whole DAY? Is there no reason they cannot give warning when they are about to assault their guests’ senses so we can opt out if we choose?

This was not ok.

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An Experimental Sponge Bath

Quite a while ago I wrote and posted How Do I Adult: Showering. Some people responded with comments about difficulty in the actual sensation of water hitting them through the shower head. There can be possible solutions to this just by changing the way the water flows through the shower head, but recently I thought it might be worth looking into how sponge baths work.

There seems to be a general assumption out there that sponge baths are either for people who are bedridden or for people who do not have running water, and all of the instructions I could find out there are specifically directed for those groups. I took the information and modified it a bit, since I can move around and do have running water, and did an experiment. Here’s how it went!

The initial set-up wound up being more about what worked best in my bathroom rather than about any limitations my body had. I took a large aluminum mixing bowl, plopped a spoonful of baking soda in it, filled it with hot water, and placed it in the bathroom sink. I put a towel on the floor to stand on in order to catch most of my drips. Then I grabbed a washcloth, dunked it in the bowl to get it wet, and got to scrubbing.

Basically, I would get the washcloth wet, scrub a part of my body, and then re-dunk the wash cloth. This actually was a very quick process and only took a few minutes to scrub my whole body. After that I put the washcloth aside and leaned forward to dunk my head in the water in order to wash my hair. I got my hair nice and wet and combed it to get the baking soda through it.

Next up I dumped the used water down the shower drain and set the bowl aside. I got the water running in the sink again and stuck my head under it to rinse my hair. I also decided that I wanted to soap up the parts of my body that are most prone to being sweaty or smelly – namely, my armpits and my genitals. So I grabbed some soap and quickly soaped up those spots. Then I used my wet washcloth to wipe the soap bath off, wiping and rinsing the washcloth in running water in the sink.

I have read that it is not necessary to rinse after a baking soda bath, but I decided to rinse myself anyway. Keeping the water running in the sink I rinsed out the washcloth I had used, and then lightly rubbed myself down with it much the same way I did to wash myself. I got it nice and wet with the water, wiped down a part of my body, and repeated until I was done.

Now all the was left was final clean up! I dried off with a towel the same way I would after a regular shower. I used the towel on the floor to wipe up any water splatter on the floor, and I rinsed out the bowl I had used for the baking soda bath. Finally, I hung up the towels used and put everything away.

Alternatives

I did things the way that I did mostly because my tub/shower gets cranky when the water is switched from the shower head to the faucet. Another way to do this would be to get into your tub like usual and sit down – either right in the tub or on a shower stool. You could also skip the baking soda entirely and just scrub with water, though you’d probably still want to use soap on armpits and genitals. Yet another option would be to go ahead and soap up entirely. Since you would still have access to running water, you could use a cup to catch water from the faucet and pour it over yourself to rinse. Hopefully that would still allow for a thorough cleaning while avoiding potential sensory difficulties from the shower head.

I imagine there are any number of variations that are possible that I haven’t thought of at all, that could accommodate different people’s needs or bathroom arrangements.

Final Thoughts

Overall I am happy with this experiment. Both my skin and hair feel lovely and soft, and I still felt refreshed and clean once I was done. I am not always very good at showering quickly and especially have difficulty getting water a temperature that I am happy stepping into. This was much faster and water temperature had a lot more flexibility to it since I did not have to stick my whole body into it. Also, it is currently hot and sticky out, and my bathroom is not temperature controlled. Being able to just stand there wet, without anything hot (or even warm) beating against me was quite nice.

The bad part: I still got itchy! So itchy! There are a number of possible explanations I can see for this:

  1. I am prone to itchiness when it is hot and sticky anyway, particularly after a shower. It’s possible that my itchies were just typical post-bathing, hot-weather itches.
  2. I used a harsher washcloth than I usually do. In retrospect, I’m not sure why I did that. Probably something to do with thinking I should “scrub.” That probably made my skin unhappy. In the future, I will stick with my nice, soft, friendly washcloths.
  3. It’s possible I should have rinsed the baking soda better than I did. I am least convinced of those one as the part I rinsed the least (my back) is also a part that is not itchy. However, I may see if I can get my recalcitrant plumbing to cooperate with me and attempt another sponge bath experiment in my tub, so I can rinse with a cup instead of a washcloth.

I currently intend to continue my experiments given how well I think this one went. If it continues to go well, I may even write up a How Do I Adult post about it all. As it is, I do believe it is an experiment I can recommend to other people as worthwhile if showers are difficult for whatever reason.

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I have a business idea

Though honestly, I do not believe I will ever actually do it. I like to believe I could do it if I had help, but I do not see myself as capable of doing the whole thing on my own.

That said, I am excited about my idea so at the very least, I want to share it to see if other people think that it is nifty too.

It all started a little while ago when I was trying to shop for a keyboard. I wanted to try them in person because the amount of noise the keyboard I use makes is a huge issue for me. The entire experience was overwhelming. Loud music, confusing store layouts, echoey sounds, visual confusion, and I realized that shopping is always like this. It seems that sensory friendly stores just do not exist.

Which became my idea. A sensory friendly store! I want to be able to offer people a sensory-friendly shopping experience so that shopping can be as low stress as possible. I have a number of things I would want to make sure are included:

  • no background music
  • carpet and sound dampening tiles around to reduce noise and echoes
  • a simple layout to make navigating easy
  • a smooth ceiling with recessed lights so that it is visually easy to distinguish overhead signs from background
  • no fluorescents! This store would have lights that do not flicker.
  • Small time-out rooms with sensory friendly furniture and lights that can be turned off, in case people need a break.

I don’t think I would want it to be specifically for selling sensory-friendly items – it would be a more general store than that. However, I do think I would want to make a point to sell sensory-friendly items. Things like sensory furniture, weighted vests, compression clothing, etc. If I sold clothing, I have split ideas for how to organize it. I think that I would not want to organize the “normal” way, with juniors, misses, women’s, etc. I think I would like to organize either by fabric type or by color. Fabric type because many people have specific needs for what they can deal with wearing. For instance, I almost exclusively wear soft knits. If a store had a “soft knit” section where I could find shirts, pants, capris, skirts, dresses, etc, I would spend lots of time there! The color idea was more to emulate some thrift stores that organize their clothes by color first and size second. Want a black shirt? Just go to the black shirt section! This is good for people who wear very limited color choices – which happens to also be a group I fall into.

So in a nutshell, that is the idea. To bring people a shopping experience that they do not get elsewhere. An experience that will hopefully never leave anyone dropping everything they have and running out of the store because they just cannot handle being in there anymore.

So what do you think? If a store like that existed, would you shop there?

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Radio Sensory

So there’s this guy, by the name of Matthew Morgan. I don’t personally know him, though he did graciously answer a few questions I sent him regarding a project of his.

That project being, Radio Sensory. To put it briefly, it’s a radio station that you can play in your media player on your computer (and possibly smart device, though I cannot personally vouch for that), that plays various sounds meant to be soothing. It is specifically for those of us on the autism spectrum who may at times desire or need repetitive, soft auditory input. He himself is on the autism spectrum (mild autism disorder, specifically), and uses his radio station around once a week or so.

Honestly, I think it’s a pretty neat project. He says he originally got the idea from reading posts in places like wrongplanet and yahoo answers, and seeing people talk about autistic children having a difficult time getting to sleep. In response, he made an internet radio station! That’s so cool! Heck, all I would do is blog about sleep.

Apparently there is a website where he can find sounds that are in the public domain, and tries to add around an hour of new content every two weeks or so. As far as I know it’s still a fairly young project and while he does actively work on it, it is not a high priority for him as not many people use it.

The main downsides are:

1. You need to download something (I don’t really understand what) and then play it through your media player. Browser-based listening should happen eventually, but is not currently possible.

2. You have no control over what sort of sounds you get, as it is a radio station. I find myself hoping that at some point in the future, if it gets more popular, there will be a variety of channels with different types of sounds so people can choose what they find most soothing. As it is, you turn it on and you get what you get.

Personally, I have found that if I am feeling wound up, turning Radio Sensory on for a little while can help a lot in finding my equilibrium. And that’s pretty nifty right there.

(and after having just shoveled around a foot of snow, some nice, soothing noises sounds really good right about now)

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Touching

I posted before about things people can say that Aren’t Helpful. Getting a touch more specific, one of those pieces of not-so-welcome advice I’ve gotten is “let people touch you.”

Ok, I sort of get it. I know that most people like to have those little forms of social touch like shaking hands and whatnot, and it makes them feel more comfortable around strangers and such. It gives a sense of connection. I do know all that. I know that it’s expected in social situations, and I know that a refusal on my part can seem weird or rude.

All that said, NO. Even if I was totally ok with random strangers grabbing me, I have sensory issues. There are ways that are ok to touch me and ways that aren’t. The ways that are not ok to touch me are rather odd and not the sort of thing people can be reasonably expected to guess. This means that people generally need to be trained on how to touch me, and they need to accept my boundaries. If I don’t get those things then touching isn’t cool.

On top of that, I am VERY possessive of my body. It’s mine, dammit, and I get to say what happens to it. For the record, I am also against forcing children to hug people they may not want to hug, because all it does is teach them that they don’t have the right to say who gets to touch them and how. That is one messed up message. I say that I DO get to say who gets to touch me and who doesn’t, and if I’m restrictive about it, that’s my right.

Some of the problem is phrasing. If someone were to say “socializing goes more smoothly if you can or will let people touch you,” that would be unnecessary and a tad condescending (I know that already), but not horrendously bad. But when people simply say “let people touch you,” they are essentially giving me an order without taking into account the various reasons I may have to not let people touch me. They are, intentionally or not, taking steps to remove my body autonomy from me, and that is Not Ok.

It’s great if you want to be helpful, but please think about what you’re really saying and how your words might come across.

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Just Try Harder

 

Sometimes people say rather hurtful things to me, and I’m sure others, with the best of intentions. They’re trying to give advice and really believe they’re saying something helpful, and somehow just don’t understand how hurtful it can be to hear them. Many of them can be generally classified as exhortations to just try harder.

All we need to do is just put in more effort, or take these classes, or see that type of therapist, or avoid those foods, and if we just worked at it, we’d be fine!

Thing is, it always seems like it carries the implication that I must not be working at things already, and it definitely carries the implication that I’m not working hard enough. It also implies that whatever it is they are encouraging me to fix can be fixed, so the fact that my aspie-ness is showing is somehow my fault. As “helpful advice” goes, I find it insulting and hurtful and not helpful at all. Especially because that particular brand of advice almost never comes when I’ve actually asked for advice. It seems to reside almost entirely in the realm of unsolicited advice, from people who think they know what’s wrong with me better than I do.

Here’s the deal. I do work. I work hard. But I don’t necessarily work hard at the things people think I should work hard at. I work hard to be able to walk up to an associate in a store to ask for help. I work hard to remember to reciprocate social questions. I work hard to deal with my sensory issues. I work hard to increase my mobility so I don’t hide in my house away from the world all the time. I work hard to talk to people I don’t know.

I do not work hard to hide my stimming, even in public. I only sort of work hard to hide my awkwardness in social situations. I do not push myself to keep my ASD hidden away, as though it’s somehow shameful or wrong. Yeah, I will apologize and try to improve if I am unintentionally rude or make a legitimate social slip, but I will not apologize for being strange or quirky or sensitive or twitchy or any number of other things that make me odd, but are not actually wrong.

“Trying harder” will not make my social awkwardness go away. “Trying harder” will not magically let me learn all the social protocols I have yet to learn. “Trying harder” will not cure my sensory issues. I already try damned hard.

I refuse to “try harder” to pass for normal. I pass or I don’t pass. I won’t apologize for who and what I am.

All of which means that “just try harder” is both useless and insulting, and not something I should have to hear from anyone. I can appreciate someone trying to be helpful (sort of) but please pay attention to the sorts of things you say, and what they may sound like from the other side.

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Sensory Friendly

Sorry about missing last week, everyone. My life has been kind of weird.

For today, just a short thing regarding some cool stuff people are doing.  Basically, there are a few theaters out there who have begun showing sensory/autism friendly screenings of some movies or plays, specifically to cater to people or children on the spectrum.  Honestly, I think this is pretty nifty.

AMC Theaters have started having sensory-friendly screenings once a month at quite a few of their theaters. They keep the lights higher than usual, the sound lower than usual, and they lift their usual “silence is golden” policy, so it’s ok if children can’t stay silent.

The Theater Development Fund (TDF) has been working to increase theater accessibility for a while now, and recently started having autism friendly shows. They also are being careful about sound and light levels.

Over in the UK/Ireland, Odeon Cinemas are doing the same thing.

Overall, I give my commendations to these three groups, and any others I haven’t encountered yet that are doing the same thing.

Of course, this being my blog, and given one of the reasons I started this blog, I can’t let this go without at least a little bit of further commentary. It’s not always clear as to whether these shows are for anyone on the autism spectrum regardless of age, or only for children on the spectrum and their parents/family’s. It would be disappointing to me if adults were excluded. While I am capable of going to movies and such (which means these things perhaps aren’t for me anyway), it is a stressful and challenging experience that I can only do when I’m feeling up for it. The idea of going to a movie where I won’t have to deal with quite so much sensory bombardment is quite appealing to me. I intend to contact AMC theaters to see what they have to say on the matter. If they get back to me, I will post an update to let you all know.

Still, overall I want to say that this is a step in the right direction, and hopefully we will see more steps forward in the future.

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Core Issue?

In some of my reading about AS, I saw it mentioned that the “core issues” of AS are the social issues.  The sensory issues, while still important, were apparently of lesser impact.  I disagree with this take, and I feel like talking about it.

First of all, I think picking one category out of the various things AS impacts, and calling that category the “core issue” is somewhat of a flawed way of looking at it.  However, that is probably due to my own rather odd thought patterns.  I really need to accept that deciding on a “core thing” is something that people like to do.  So putting that aside for a bit, I don’t think that the social issues are the core issues at hand.  I certainly think they are significant, and I suppose they seem like the major thing from the outside because that’s what people are more likely to see.  However, from my subjective viewpoint, it’s the sensory issues that have the biggest impact.  (of course, the social issues are a huge deal too, and I don’t mean to say that they aren’t for me)

See, whether or not any given social issue is something I need to worry about depends on whether or not I’m actually trying to socialize.  And when it comes right down to it, I only try to socialize a minority of the time.  When I do socialize, I can learn patterns and ways of doing things, and then follow those patterns.  It isn’t perfect, but I am actually able to pass for normal much of the time.  However, I can never get away from my sensory issues.  They are with me all the time, and they affect my life in almost every area.  What I eat, what I wear, how I sit, what blankets I can have on my bed, and on and on and on.  I can never take a break from them the way I can take a break from people.  Not really.

Another big way I look at it is how the social and sensory issues interact.  My social issues don’t really have much of an impact on my sensory issues.  My sensory issues, on the other hand, have a HUGE impact on my social issues.  Sometimes I can’t deal with people touching me, and I have to say so.  I can never tolerate people touching or stroking me lightly, which has had an impact on some of my relationships with people.  I can’t handle parties at all due to both social and sensory issues.  While I may, someday, learn enough of the social dance to handle unstructured social occasions (I doubt it, but I suppose unliklier things have happened), that won’t change the problems I have with overwhelming sensory input.  I can, on a really good day, deal with one OR the other (I have had good experiences at concerts on rare occasions), but both?  No way.

Honestly, I don’t really like to prioritize one class of difficulty over another, but this shows that I can easily make the argument that sensory issues are “core.”  I wonder what other people think.

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