Oh, how I would love to talk about ideas…

sunrise behind clouds over the oceanSo, this trip has been interesting. I have 11 hours to go (and yes, I am counting), till I get to leave the office, get in my car, and drive to the airport. Then, I’ll have yet another bite to eat, board the plane, and fly home.

I can’t wait. I’m done here. I was supposed to have dinner with an Aspie friend, last night, but I ended up having to do a work team-building thing — going out to dinner with my coworkers, and then having ice cream afterwards. It was a good time, and I enjoyed hanging out with them. Just like I’ve enjoyed spending time with other folks, discussing work and other subjects, and everything that goes along with networking for work.

Sure, I enjoy spending time with these people, but when do I get time to decompress? All this peopling has been incredibly taxing. It’s exhausting, no matter how much I enjoy it. There’s too much to take in, too much to process, and all of it’s happening in an environment that’s inherently hostile to me and my sensibilities on a profound level. Everything around me is too too loud, too bright, too frenetic, too superficial, too political, too… everything.

And not an in-depth idea in sight, from what I can tell.

I’ve spent the last four days skimming the surface of life, and it’s about as much as I’m prepared to indulge. Everybody’s saying I should stay longer. I should spend more time. I should even move out here. They like me. I like them. We get along. There’s a fair amount of love between me and my coworkers here, and they enjoy working with me.

But it’s a one-way street, social and mentally speaking. I’m the one working overtime to fit in and adapt to their ways. I’m the one putting out the effort to blend and be a responsible individual who cultivates positive social interactions. I’m the one who’s bending over backwards (metaphorically) and putting a cramp in my back (literally) to adapt to their schedules, their food choices, their priorities, their values.

Very, very little of what goes on here and what people care about appeals to me. Living a classic American conspicuous hyper-consumer lifestyle in ways that support and further the dominant paradigm (as well as  the economy), and structuring your life around your popularity, social standing, and political connections are about as far from my main priorities, and you can get.

It’s just so vacuous… I feel like I’ve been living at an extremely high altitude for the past week, with very little oxygen, no trees, and no signs of diverse life to be found.

And nobody around me seems to notice, which worries me.

I mean, I like the people I work with. But at some point, I need to talk about more than office politics, as well as their mainstream lives. I need to discuss more than what people had for dinner the night before, or what the school schedules are. I’m out of  place, but I’m the only one who notices, because I follow other people’s leads, and I play to their strengths. It’s much easier to interact with people, when I make them the center of attention. They love it. They love to talk about their lives, their cars, their kids, their hobbies. But very, very little of it has anything to do with queer little ole me.

Which is pretty much the story of my life. Not much around me has anything to do with me or my values, my priorities, my interests. Never mind what I would have talked about, if I’d been able to go to dinner with my friend last night. We would have riffed on abstract concepts for hours. But alas… alack… All I have to show for dinner last night is a dessicated, intellectually barren experience, where I’ve worn myself out interacting with people nothing like me at all, doing things that don’t interest me… and there’s always the chance I’ve insulted someone without intending to.

Ah, well.

I get to go home today. Back to my books, back to my routine, back to my regular eating and exercise schedule. Back to my house, my partner, my queerness, my nonbinary, noncompliant ways, and the life that I’ve structured exactly the way I want it. Back to my quiet, my peace, my steady cadence. Back to my ideas. Back to a place where I can actually think, instead of being rushed and pushed and cajoled and coerced into meeting someone else’s cookie-cutter social needs, on someone else’s time, according to someone else’s idea about how things should be done.

Well, I’m sure I’ll get some insight from this trip, on down the line, but for now, I’m just really relieved to be finishing up my stay here and going home this afternoon. I’m sure I’ll be back here, sometime in the not-so-distant future, but for now, I’m looking forward to getting my life back to how I want and need it to be.

The day is starting. Let the games begin. Again. For the time being.

“Old School” Autism Adjustment

school building in snow on film strip

I’ve been thinking a lot lately about how I structure my life. And I’ve been thinking about how I handle myself, regardless of what comes along.

Because I do. Of course, it falls down, here and there. Of course it does. I’m human. I have finite resources, and like a high-performance race car, I need to pull off the track, every so many revolutions, and get tuned up. I’m no different than a Formula-One race car, in that respect. High-performance vehicles, including my body and brain, need more specialized care on a more frequent basis.

That doesn’t make me disabled. It makes me high-performance with specific needs.

Interestingly, nobody’s calling F-1 race cars “disabled” because their tires need to be changed more frequently than your everyday family sedan.

Please.

And here’s where my New Year starts out a little early. I’ve got this new resolution to really “reframe” (much as I hate that word) the way I talk about Autism. Hmm… let me think of a much better word than “reframe” — okay, let’s use “redefine”. Because that’s essentially what I’m doing. The words I use add shape and texture to the concept of my Autism, and by using different words and different mindsets to talk about that central part of me, I can literally change the quality of my life and the thoughts/concepts that guide it.

If others “get it”, then great. If my example helps them to redefine their own experience (whether it’s Autistic or not) and create a more self-aware and self-directed way of life that’s got less pain and suffering, then great. But my redefinition isn’t for the sake of anyone else. It’s for my sake. I am Autistic, after all. 😉

One thing driving this shift is my experience of looking through my library of images I’ve used in blog posts over the past year or so. I’ve been actively blogging here for nearly two years. I started this blog back in June, 2008, then had to tend to other things, and I came back in February, 2016. Some days, it seems like a lot longer than two years, and other days, it seems a lot shorter.

I’m alexithymic like that.

Anyway, I noticed that so-so many of my images have really negative connotations for me. There’s a lot of suffering archived in my media library. And while searching in vain for some really uplifting images (or just some pragmatically strength-inspiring pics), I came up with nothing, time and time again.

sunflower

Oh, here and there, I found an image or two. But on the whole, things look pretty grim. I’d have to say the ratio of gloomy:gleeful is about 9.24:1.

So, that’s gotta change.

I’ve talked before about how we need more Autistic Joy, and I still believe that. But it’s not enough to mention it now and then in a blog post. It’s got to be the main theme in all my blog posts. And if not outright joy, then at least some discussion of how I’m managing my Autistic life — and doing it successfully.

Oddly, I feel as though I may be failing “the cause” as I write this. Because Autistic people are supposed to get support and resources for our difficulties. Yes, when appropriate, I absolutely believe that. If I am completely and totally unable to help myself, then I do need extra help.

The thing is, I’m rarely, if ever, completely and totally unable to help myself. I may have lost track of all the ways my system was being slowly eroded by circumstances beyond my control. I may have allowed myself become so run-down that I lost my normal capabilities. I may have gotten so wrapped up in what I was doing, I forgot to eat, drink, sleep, and empty my bladder, and that’s making my life a lot more “interesting” than I’d like it, as I gingerly wobble across the house to get to the bathroom.

But those things are on me. I may be Autistic, but I’ve helped to create those conditions. I didn’t properly manage my life — which I’m perfectly capable of doing. I didn’t take good care of myself — which I know I need to do, so what’s my excuse? I didn’t set a timer (which I know I sometimes need) to eat, drink, sleep, and keep track of my bladder’s state. Self-created suffering is not the sort of thing I can use to demand more services for my situation.

It may sound like I’m being too hard on myself, but I’m not. I was raised to know better, and to do better. And I was raised in a world where I was expected to take responsibility for myself, even for the times when I struggle. Especially for the times when I struggle. Because everyone is dealing with something pretty Big, and they don’t have extra time and attention to devote to my own self-created issues.

If I’m capable of discerning my difficulties (which I am, more than anyone else), and I’m able to learn from my experiences (which I can, and do, regularly), then it’s my responsibility to make provisions for my situation. Manage my issues. Restructure my life so that I’m not suffering, if it can at all be prevented. And make the damn’ effort to not get myself into taxing situations that I know, from experience, are going to make life worse for me — and everyone around me.

Yeah, I’m old school. That’s for certain. My approach isn’t for everyone, but it most certainly is for me. And as one contingent of Autistic folks focuses on the disability side of things, I’m focusing on the “Autistic ability” side of things — because our lives are different and shouldn’t be expected to be exactly the same. And because I’ve figured out how to live my life as an actually successful (and yes, I’m using the word in its true sense) Autistic adult. I was as a successful Autistic child, teen, and young adult. I just didn’t realize it, thank you alexithymia. Turns out, the very thing that makes it possible for me to function effectively in situations that freak other people out, actually hides that effectiveness from the rest of me. So, I’m a heck of a lot more successful and happy and content than I realize.

Damn… I need to write a whole post about that, sometime. Or maybe I already have… Anyway, that’s another idea for another day.

So, with the New Year just around the corner, it’s time to get some more positive pictures in my media library. And get some more pro-active, pro-Autism posts in my blog. Staying stuck in how horrible everything is… well, that doesn’t serve anyone. Least of all me.


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A “Sample Sensory Diet” of Common Sense

a picture of a number of cherry picker lifts in a storage yard

Some years ago, I found this:

A Sample Sensory Diet

The following guidelines represent a kind of sensory diet for one particular child. Keep in mind that every child has a different regulatory and sensory profile, and that these activities are not appropriate or useful for every child. You should get guidance from an occupational therapist or other individual who is experienced with sensory integration.

In this particular example, the child would become disorganized on a regular basis. Although this has meant different things at different times, this child shows disorganization primarily by:

  • being extremely silly and unresponsive
  • laughing uncontrollably
  • losing control of his body–getting extremely limp and/or clumsy
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way
  • humming and clicking while wandering around aimlessly

Engaging this child in sensory activities on a frequent, regular basis seemed to help him to remain engaged, focused, and in control more often. When this child does get disorganized, these activities help him to find himself again.

Great resources for sensory integration information:

Kranowitz, Carol Stock. The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction. 1998. New York: The Berkley Publishing Group.

Ayres, A. Jean, PhD. Sensory Integration and the Child. Western Psychological Services: Los Angeles, 1979.


At the critical times during the day, plan on activating the child with these activities.

NOTE: Spin the child at every activation phase. Spin him in the swing 10 complete revolutions each direction, with a 20-30 second pause in between. Spin firmly and quickly. Do not repeat.

Warning: For some children, spinning is not useful, and can be overstimulating and dangerous. Before engaging in any of these activities (and spinning in particular), please consult a professional who has a solid understanding of sensory integration principles.

Chase Games

  • Tag
  • Follow-the-Leader
  • Obstacle Courses
  • Red Light/Green Light
  • Running Races

Exercise Games

  • Simon Says
  • Obstacle Course
  • “If You’re Happy & You Know It”

Incorporate:

Jumping Jacks
Stretching
Situps and Pullups
Tumbling/Head Stands
Balance Beam
Standing on one leg
Wheelbarrow

Swinging/Bouncing

  • Inside swings
  • Trampoline
  • Hang-bar
  • Tire Swing
  • Outside swings
  • Outside trolley
  • Exercise ball

Squeezables

  • Nerf balls
  • Gak, floam, flubber, silly putty
  • Play catch with any ball

Incorporate those activities plus others listed in the box below into as many of your games as possible. Be sure to work in a sensory activity at least every half hour.

EVERY HALF HOUR AND ANYTIME

Other Sensory Stimulation

Everything on the other list plus:

  • Smelling Scents Game
  • Rubbing/Brushing (brush firmly and consistently–avoid stomach)
  • Rolling Up In Blanket
  • Crawling through a “caterpillar” (long tube of stretchy fabric)
  • Dragging/Sliding Around Room
  • Silly Walks (e.g., crab walk)
  • Ball and Bat
  • Imitating Songs
  • Hand Games
  • Stilts/Roller Skates
  • Jump Rope

CALMING ACTIVITIES

8:30AM Bath, Brushing, Deep Pressure

3:15PM Child’s choice (e.g., biking)

6:30PM Supper, Bath, Deep Pressure, Free Play, Stories, Bed

Now, a bunch of things come to mind, when I read this.

The first is, Why is this considered a “sensory diet” that needs to be specifically detailed to parents? I thought that’s just how kids were/are supposed to occupy themselves when they’re kids!

I mean, seriously – why is this a plan of action that is called out as something special, something artificial? Why is this something that is seen as out of the ordinary? When I was a kid, this is just what we did — we played plenty of “Chase Games” like tag, follow-the-leader, obstacle courses, red light/green light, and running races. And we played plenty of “Exercise Games” like Simon Says, creating and running through obstacle courses, and singing “If You’re Happy & You Know It”. And we didn’t need a trained expert to “instruct” us how to do it.

Am I the only one who thinks that this “professionalized” approach is a bit silly? For people who are too busy to tend to their children and are eager to plop them down in front of the television or the DVD player or the computer, it might be necessary to detail exactly why kids need to play games like this, but it’s a sad, sad commentary on modern American life, when parents and adults need to be explicitly told to create conditions in which their kids can play tag, follow-the-leader, and red light/green light.

I really think there’s something in kids that instinctively knows what they/we need, in order to mature and grow up strong. When I was a kid, we instinctively did jumping jacks, stretching, situps and pullups, tumbling/head stands, balance beam, standing on one leg, and wheelbarrow. We didn’t need “guidance from an occupational therapist or other individual who is experienced with sensory integration.” We just did it. We ran around and played. We raced each other and tested our physical limits and worked our tumbling and balancing into the course of our play. We skipped rope. We climbed, we jumped, we did all sorts of things that kids apparently don’t do anymore, unless they’re specifically ordered to do so by trained professionals or parents who have been coached by experts.

How did we get to this place? How did the domain of child’s play become the exclusive domain of qualified and certified professionals? I have no doubt that the work authors who describe in detail (for overwhelmed adult minds) the tangible benefits of kids just being kids has made a contribution to the developmental health and well-being of lots of challenged kids. But what the hell is up with parents, that they need to be explicitly told that their kids need to play at, physically and socially, in order to develop properly?

WTF?

The next thing that comes to mind is, Holy smokes, the top part really describes me to a “t” when I was a kid. I wonder if my parents knew/noticed any of this stuff.

It’s really interesting to think back about how I was when I was growing up — really hyper and hard to control, and sensitive on top of it. And when I look at the list of issues kids can have:

  • being extremely silly and unresponsive – CHECK
  • laughing uncontrollably – CHECK
  • losing control of his/her body–getting extremely limp and/or clumsy – CHECK
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli – CHECK
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way – CHECK
  • humming and clicking while wandering around aimlessly – ??? could very well be

All of this stuff just fits me so well, except for maybe the last one, which I don’t really recall. Not that it would have been unlike me. I was an “unusual” child, to say the least, and I probably would have considered wandering around aimlessly while humming to myself to be quite a useful and productive use of time – no joke.

When I look at the list of Sensory Processing Disorder symptoms over at http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html, I’m really struck by how well a lot of them fit me, and how well they fit my mother. Whoah. This puts Mom’s behavior in a whole new light.

The problem when I was growing up was that she was on the opposite end of the spectrum than I — she was hypo-sensitive and sensation-seeking (like the proverbial bull in a china shop, always loud and high-contact and rough and not very good at figuring out physical boundaries, etc., etc.), while I on the other hand was hyper-sensitive and I had really bad reactions to touch and being pushed and pulled and treated like some rag doll.

It’s so wild to think about this, now — it really puts things in perspective. And it makes me a lot less angry with her.

It puts my whole family into perspective, in fact. My siblings had issues. I had issues. We all had issues.

And my parents made sure we grew up in an environment where we had a “rich sensory diet”. But I’m not sure they were consciously aware of all this. I don’t think my mother really understood the nature and the impact of her behavior — she still doesn’t, from what I can tell. My dad did things, too, that tied in with “sensory richness”, like building a hanging bar for us kids to play on, and always encouraging (and pushing) me to test my physical balance limits, like with my skateboard.

Mom and Dad did appear to do things instinctively to address my issues, such as spinning me around and making sure I was always physically active and encouraging me to do lots of things that developed my balance and coordination. I was a dorky kid, with a lot of problems balancing, and I have distinct memories of my parents — especially my mother — going to great lengths to get me to participate in activities that would help me develop those. But I’m not sure they consciously chose or planned to do these things. It wasn’t like they had a formula for making sure we kids developed adequate proprioceptive and vestibular viability. It wasn’t like they consulted with experts about how best to address my sensory processing dysfunction.

At least, I don’t think so. It could be that they did talk to child psychologists and what-not, and they just hid their methods from me (which wasn’t hard to do, when I was an innocent and all-but-clueless kid). Mom did have a copy of “Dr. Spock” around, and she consulted it a lot, but so much of what my parents did, other parents in our area did for their kids, as well. It was just how things were done in the world I grew up in.

This part of my post dovetails nicely with the first part — that is, what is up with parents today, and why do they need to have these things explicitly told to them?

This really, really puzzles me. Is it because there has been so much emphasis put on “professionalization” in the past 50 years (since the USA rose to a position of global domination and the parallel veritable explosion of higher education and proliferation of specialists), that we as a society are invested in our experts? Is it because we as a society have put so many of our eggs in the basket of developing “professional expertise” that we’re now obligated to dip into the pool of professional knowledge, in order to do anything, anymore? Have we become so enamored of our “advancement” that we’ve made it all but impossible to live our lives? I smell the scent of another extended blog post, for another time… but the burning question with regard to this issue within the context of this post, is, are parents so dependent on professionals for guidance, that they are afraid to just parent? And are they so distanced from the varieties of life (sitting in their homogenized cubicles in their standards-driven office environments), that they fear even the slightest deviation from “normality”, as it’s defined by the qualified professionals of the day?

Seriously, when I look at the organizations dedicated to stamping out the “autism epidemic,” I’m struck by the corporate backgrounds of these individuals. How many of the folks sitting on the boards and doing the research have actually experienced what it’s like to be outside the acceptable range of “normal” behavior and human experience? Where’s the diversity? I wonder. The unfamiliar makes people afraid. Fear makes people do rash things. Fear makes people start and/or send money to organizations and initiatives that promise to relieve their fear.

I think one of the big reasons that my own parents could create situations where I was active and had the chance to develop coordination and balance, was that they themselves have sensory processing issues, themselves and they grew up in an environment where sensory issues and autistic spectrum behaviors and tendencies were/are actually a “regular” part of life.

Anybody who says that autism is a “new” epidemic has never spent time with my family, my extended network of relatives, and the insular communities of faith in the neck of the woods where I grew up. Most, if not all, of my relatives (including third cousins twice removed, whom I actually did grow up around), as well as most of my friends and acquaintances and people I went to church with, could easily be placed somewhere on the Autistic Spectrum. Where I grew up, all you have to do is go buy a quart of milk at the local convenience store, to bump into people who — in private or unguarded moments — exhibit plenty of signs of “autistic spectrum-ish” behavior. I’m serious about this. We’re built differently, where I grew up. If you head into that neck o’ the woods (and I do mean woods), I can all but guarantee any aspiring student of the autistic spectrum will find a plethora of examples of folks all along the autistic spectrum and/or with significant sensory processing issues, who are “recovered” or at least sufficiently rehabilitated to function fully as mature adults in the big, bad world. (I won’t say where that neck of the woods is, for the sake of privacy and retaining the human dignity of possible targets of “autistic diagnosis”.)

Does this mean that the land where I grew up is chock full of behaviorally challenged individuals who need special intervention, just to get along in the world? Hell no. It just means that this so-called “autistic epidemic” might, to some extent, be a fabrication of people who have become so distanced from the flow of natural, organic life, that

A) they don’t realize that their kids actually need to run around and play, in order to grow up capable and strong and well-adjusted to the social and the physical world,

B) they can’t make a move without consulting with a trained professional expert, and

C) that the phenomenon we call “autism” may, in some cases, actually be an extreme and underdeveloped expression of what may be perfectly normal part of life — a part of life that certain folks know how to integrate into their daily lives, over the course of their constantly evolving life experience.

Now, I can sense that I’m drifting off-track with this post. And I may be courting a great deal of controversy (even wrath from the “autism epidemic” proponents). I’m finding more tangents, and my associational mind is going wild, here, and I’m sure I’m not being very diplomatic, so I’ll get myself back on track and speak to these issues more, later on. For now, let’s return to the “Sensory Diet” web page.

Under the Activities, I find even more “regular and normal” parts of my childhood experience:

Swinging/Bouncing

  • Inside swings — we had a front porch swing that we kids often sat and swung on. It wasn’t “therapy”, it was fun, and it was what we did on summer nights.
  • Trampoline — our town had one at town hall for us kids to jump on during summer vacation. I think they may have removed it, due to safety concerns, but it was one of the best parts of summer, to head over to town hall and jump on the trampoline, while the Bee Gees were playing on the radio.
  • Hang-bar — my dad installed one in our back yard, and we played on it constantly. It was just something that we had. I don’t think a doctor or expert told him to put one in. It was just seen as something that was an essential part of growing up.
  • Tire Swing — my grandparents had one of these, and when all the cousins would gather, we would all just achingly pine for our chance to get on that swing. It was one of my favorite parts of visiting my grandparents, and it was a really vital element in me keeping my cool, during visits. My grandparents’ house out in the country was full of strange and strong smells that my city nose didn’t recognize. It was easy for me to get sensorily overwhelmed, so I spent a lot of time on the tire swing.
  • Outside swings — see above. Also, I and my siblings and my best friends, loved to swing on the playground swingsets, long past the time when we were supposed to “grow out of them”. We’d head over to the park and sit in the swings and twirl and spin and do all sorts of things that “normal” people would probably consider aberrant. But we were by ourselves, and we didn’t get crap from anyone, because no one was watching us. And if they had been, we would have told them to “shove off!” anyway.
  • Outside trolley — ?? what’s this?
  • Exercise ball — This is a newfangled thing, so I can’t speak to its place in my childhood development.

Squeezables like nerf balls and silly putty were a really important part of my childhood experience. No trip to the pool was complete without a nerf ball to throw, flinging water in all directions. And nerf footballs were the only acceptable kinds of footballs to have. I remember many a game of football, with all us kids squishing and pressing and worrying the nerf football, till it started to literally fall apart in our hands. We loved our nerf footballs to death, picking absentmindedly at the surface, squeezing and pressing and throwing and catching.

We really played catch with any ball we could find. Soft squishy balls, hard softballs, tennis balls, baseballs… Run-down was a particular favorite, as we could play it in limited space and race back and forth between the bases, coordinating our motions and actions.

And we didn’t need to have trained experts show us how to do it, or tell our parents to allow us to do all this.

We just did it ourselves. Our parents expected it. And they created space and opportunity for us to do it.

This wasn’t all considered a “special sensory diet” — it was just the process of growing up. It was The Way Things Were Done.

This being said, the last thing that comes to mind is, What is up with this web page, with the “scheduling” of these kinds of sensory diet activities? How contrived — and artificial — is that?

I mean, come on, people — You have seriously got to be kidding me, that you’d actually “work in a sensory activity at least every half hour” as though it’s some part of an official agenda. What’s wrong with just spontaneously allowing these things to happen? What’s wrong with just creating an environment where kids are allowed to do all this on their own, at their own pace, in their own ways? I firmly believe, from my own experience — and my own fully functional nature — that even the most impaired kids (if given half a chance) have the innate capacity to identify the activities and the pastimes that will strengthen their weak points.

They/we just have to be allowed to do so. Without being ridiculed. Without being pitied. Without being considered “abnormal” or “defective”. Without being bullied and tortured and treated like freaks.

Maybe I’m being overly negative-Aspie and insensitive to the needs of SPD/Autistic kids, but to me that having adults organize and participate in these sorts of activities with special needs kids seems a little dumb. Adults just don’t have the imaginative range or the endurance or the flexibility (in terms of time and attention) that kids have, and they’re (in my opinion) much too “temporally bound” — as in, too aware of time schedules and deadlines — to give kids the quality of attention and activity that they need.

Why not just turn off the television and unplug the DVD player and computer, and get the kids to play? Why not just “chase ’em outside” like my mom used to do all the time, and create places where they can indulge their every SPD-rehabilitory activity to their hearts’ content? Why not just gather a bunch of kids together and teach them to tolerate differences and recognize each others’ strengths? Teach them to let the kid who can’t hit the ball to save his life keep score and organize the league. Teach them to be patient and not tease and taunt just because one of the kids picks his nose or flaps his arms when he’s agitated.

Why not just let kids be kids — and teach them to let other kids be… other? Without sanction. Without punishment. Without shame and ridicule. That seems to be a more fitting solution, than contriving all these carefully scripted and scheduled and choreographed and adult-driven activities that are poor imitations of the “real thing.” And it might just train the emerging generation of NT folks to tolerate diversity and not be mean-spirited bastards to those of us whose worst, most heinous crime is making others nervous.

How about just not treating developing kids like we’re abnormal… simply because they’re still developing?

We are all works in progress, and the sooner we stop pathologizing diversity and learn to let each other just be (and give us ugly ducklings the time and the chance to become the swans we truly are), the better off the whole planet will be.

That’s just my opinion, but I don’t think I’m wrong.

Armed to the Teeth – Coping strategies for dental procedures

Armed to the Teeth

Coping strategies for dental procedures for highly sensitive individuals


Introduction

When it comes to health care, few aspects are as problematic for individuals with heightened physical sensitivities, especially those on the Autistic Spectrum and with Asperger’s Syndrome (“AS”). I, myself have had considerable sensory issues, from childhood into adulthood, and I’ve “been through the ringer” many times with the dentist. Fortunately, I’ve developed a number of coping strategies and mechanisms, and by trial-and-error, I’ve figured out how to visit the dentist successfully and persevere through even the most trying procedures.

I have written this work in hopes of shedding some light on the ubiquitous and mysterious conundrum of ASI’s and their extreme difficulties with the dentist. The coming pages explore this issue through the lens of my own personal sensory and social experiences, as a 43 year-old woman on the Asperger’s end of the Autistic Spectrum, who has both experienced and overcome lifelong difficulties with dentists.

It is my hope that this work may shed light on common (but often unrecognized) sensory issues which are often particular to AS, show the significant part these play in further complicating what is already a difficult process (whether you’re autistic or neurotypical). Believe me, you/we are not alone! And NT parents of AS kids, please note: We’re not deliberately trying to thwart your attempts to get us the best dental care possible. We’re just very special people with extreme sensitivities which aren’t (yet) particularly well understood. And those issues can make going to the dentist nothing short of torture.

Personal Background

I am a 43-year-old Aspie woman with lifelong, chronic sensory issues, who has always had real problems with the dentist. Fortunately, I tend to be pretty obsessive-compulsive, when it comes to my daily dental care. When I’m nervous, I soothe by brushing my teeth. And I’m very careful with how I brush (I used to work with a guy who was even more OCD than I, and he brushed his teeth so hard, he wore the enamel off and had to have them all bonded — the thought of that doesn’t appeal to me in the least, so I’m very careful when I brush!). I also chill out in the evenings by flossing while I’m relaxing after a long day. So, I manage to soothe my frazzled nerves and take care of my teeth at the same time, which is great for avoiding painful dental procedures.

I absolutely detest getting my teeth cleaned and worked on. I can be so phobic about it, I go to great lengths to avoid the dentist, both by canceling my dentist appointments, and by being so conscientious about brushing and flossing that I get the seal of approval from my dentist every year. They are continuously amazed at how well I take care of my teeth, and they begrudgingly tell me that I probably don’t need to come every six months to get my teeth cleaned. They hate telling me that, but it’s the truth.

When I do visit the dentist and I need to have a tooth filled or a crown put on, I’ve developed some coping strategies that let me stay in the chair for however long I have to, and keep from losing my mind. It wasn’t always that way. I used to really “lose it” and suffer for hours afterwards, even days. Going to the dentist used to exhaust me so terribly, I’d be in shock and all I could do was sleep, after I got home. Now I have my ways of dealing with it, and I’ll share them with you shortly.

Others are not so lucky to have good coping skills, unfortunately. A close friend of mine is so sensitive and so phobic about the dentist that she neglected her teeth for years, and she’s now paying the price. She’s got to get lots of fillings replaced, have multiple root canals, and she may lose some of her teeth to a bridge. She’s also missing a tooth in the back of her mouth, which she hasn’t had replaced by a bridge or an implant, and now her teeth are “floating” out of position, which is not good, because she’s a voice actress, and she needs to have good enunciation to get work.

Bad teeth are a bad problem for her, and her problems have their root in her sensitivities, her fears, and her history of trauma with the dentist. The thing about your teeth though, is that — like we imagine about other problems — if we ignore them, they’ll just go away. But if you want to keep your teeth (or you want your kids to keep theirs), figuring out how to go to the dentist is an essential coping skill that you really can’t avoid cultivating — unless you don’t care about bad teeth.

Why It’s So Hard for Some of Us
Going to the dentist isn’t pure living hell for everyone. I don’t know anyone who enjoys it, but not everyone sees it as the life-and-death situation that some of us dread. I’m one of those people who, for years, had a terrible time even thinking about the dentist. But there’s a reason for everything.

Those annual visits were particularly hard for me because:
The sounds of getting my teeth worked on was very hard to take. I think it’s safe to say, everybody hates the sound of a dentist drill. I can’t imagine anyone who does (other than the drill-makers who delight in the sound of their products being used). It wasn’t just when I was in the chair, that it bothered me — it was hearing the drill in the background, while I was sitting in the waiting room, dreading the thought of being the person in the chair.

I never knew for sure, if the drill would be used on me, which was nerve-wracking. It’s one thing, if I knew something horrible was going to happen. Then I could prepare for it. But not knowing was probably the hardest piece.

One of the other problems was, not only the drill made noise. Everything in the dentist office made noise. The cleaning apparatus, the little spittoon that had the blue water that swirled my spittle and blood down the drain, the x-ray machine, the sound of implements being arranged and re-arranged. The cleaning apparatus sounded a lot like a drill, too, when it got going, so I had a lot of bad associations with it, even though I knew that getting my teeth cleaned was not the same as having them drilled and filled.

One of the other sounds that really bothered me was the sound of the cleaning pick on my teeth. The scratchy grinding of the metal against my teeth…. well, put my teeth on edge. I hate the sound of hard things scraping against my teeth (including wooden popsicle sticks), so the sound of the cleaning pick was pretty distracting and troublesome. Imagine having someone sit you down, forbid you from moving, and force you to listen to fingernails on a chalkboard for an hour, and you’ll get a little bit of an idea of what it’s like for some of us. But I had to put up with the sound, so my teeth would be clean.
Another problem I had was with sitting still for an extended period of time. When you have sensory issues, it can be next to impossible to sit still. I personally need to move to relieve the sensory agitation, and “move the energy” that gets “blocked” like a flowing river stopped up. I was pretty hyper when I was a kid, which I believe was sensory in nature — directly related to my surroundings. Being assailed by the noises of the room and not being able to move, to calm my nerves, was just torture.

Now, I was actually able to keep still, when I was a kid. But the only thing that did it was the fear of being cut or nicked by a sharp implement. It wasn’t pleasant, feeling like I was under constant threat, but it did the job. Also, I grew up in a time and a place that was very discipline-oriented, and most adults had no problems with correcting badly behaving children. So, my dentist was often stern with me and insisted I sit still. I think that a more lenient approach would not have worked with me. And operating in a parented environment like today’s, when permissiveness and acceptance is much more widespread, would not have helped me to sit still.

I could also never tell exactly when the cleaning would be over, which made me crazy.
I could sit still for a while, if I knew when I was going to be able to move, but being locked in place for an indeterminate period of time was torture. Again, I was reprimanded by the dentist or hygienist, if I moved, so I knew what I was supposed to do. And I did my best to do it.

Blood in my mouth and blood on my clothing made me very uncomfortable. The experience of spitting out blood into the spittoon made me really nervous. It defied my logic. In the first place, my mind told me that blood belonged inside your body, not outside. Bleeding was a sign that something was wrong. And if I was spitting out blood, then something was wrong, and the dentist/hygienist was doing something bad to me.

Bleeding was bad.

People who made you bleed were bad.

People who made a living from making you bleed were not to be trusted.

People who brought me to the people who made you bleed for a living were punishing me for something, but for exactly what, I was never sure.

It was pretty rough to sit there and submit to what I perceived to be mistreatment at the hands of people my mother handed me over to.

Ultimately, I learned to differentiate between intentionally making people bleed for fun, and having bleeding be incidental to a necessary procedure. Eventually, I learned about necessary evils and how to tolerate them for the sake of long-term gain. But it was pretty rough, when I was a kid, trying to get my head around the experience of dentist visits. It just didn’t make sense that my mother, who loved me, made me go to them.

Only when I was in my teens did it occur to me that bleeding while getting dental work done might be good. I learned that bleeding is the body’s way of cleaning out wounds, and I came to associate some (but not all) types of bleeding with a positive physical action. So, that helped me cope emotionally with the normally distressing experience of spitting out blood.

One thing that was really troubling for me, too, was getting blood on my clothing. I couldn’t always hit the spittoon properly — I was disoriented and dizzy (which I’ll talk about in a bit), and I would sometimes get blood on my clothing. I hated that! The little red specks on my clothing made me so uncomfortable, both as a reminder of what I’d been through, and because they could stain. Blood spots were messy. Messy made me nervous.

It took me years to figure out how to keep the blood off my clothing. I was a real klutz when I was a kid, but as I matured, my balance and coordination improved.

The taste and texture of the toothpaste was a problem for me. I hated the feel of the grainy texture on my teeth, and the taste of it bothered me. Eventually, I came to associate the taste with clean teeth, and it became actually agreeable to me. But years later, when they started having different flavors available for kids, that made me nervous, because I associated sweet flavors with a) sugar and b) artificial flavorings, both of which I was convinced were “bad”.

I had a strong fear of swallowing the toothpaste. In my young mind, I associated the toothpaste with medicine, and I got it into my head that swallowing the toothpaste would be a very bad thing. I was so on-edge when the toothpaste would come close to the back of my mouth, where I might swallow it. But I couldn’t move to rinse it out, because the dentist/hygienist had to work on me. It was so nerve-wracking!

Years later, it occurred to me that a dentist probably wouldn’t have toothpaste that was toxic or poisonous, or that couldn’t be safely swallowed, at least in small amounts. If that were the case, I reasoned, a lot of people would be dead, and dentists would be put out of business by lawsuits. So, I convinced myself that swallowing toothpaste would not be the end of the world.

I didn’t deliberately swallow it, but taking the pressure off made it easier for me to relax — and avoid ingesting any of the paste.

I was desperately afraid of choking. I always have been. Some Aspies have real problems with swallowing, and I had some issues when I was a kid. When I went swimming, I often accidentally inhaled or swallowed water, and it completely freaked me out. So, I associated having a mouth full of uncontrollable liquid with the feeling of drowning.

Being in the dentist chair, I had a hard time coordinating all my senses, to begin with, so controlling my swallowing reflex was even harder. Sometimes, I literally couldn’t feel whether or not the rinse was going down my throat, and that really frightened me. When you’ve nearly choked often enough, you start to get a complex about possibly having something go down the wrong pipe.

The lights were too bright. Of course, dentists have to have enough light to see what they’re doing, but for me, it was too much light. That spotlight was supposed to be bright, but it was blinding, and it made it even more difficult to keep my balance and keep from choking on the rinse.

I hated having that overhead light lowered down to point right in my face — very glaring! I can get sensorily overwhelmed even more quickly, if bright light is combined with loud sounds and strong smells, so the dentist chair was not a friendly place for me. It was just so overwhelming. There was no escaping it… Bright lights overhead, the sound of equipment and drills and machinery, the smell of toothpaste and medical supplies…

It was almost too much at times.

Being injured for days afterwards completely threw off my everyday sensory experience.
Having nicks and cuts in my mouth complicated things, because it distracted me from my daily sensory experience. It was a new physical sensation my mind has to “parse” each moment of each day, until the injuries heal up. It’s bad enough that I get nicked and cut and bloody while I’m at the dentist, but then to have to go through days of this “sensory background noise” of constant sensitivity and pain, is disorienting and agitating. I’ve since learned to deal with this… it’s really been a learned thing for me, as I’ve gained life experience with having a sore mouth after dentist visits, and I’ve learned how to handle it. But when I was young, it was so hard for me to handle the feeling of cuts in my mouth.

I was afraid that I’d infect them, or they wouldn’t heal. It really hurt me! But I didn’t let on, because I didn’t want to worry my parents. I’d made their lives difficult enough with my problems. I didn’t want to burden them with more.

I hated being leaned back in that chair. Sitting absolutely still in the chair was hard for me. The longer I was in the chair and the longer the cleaning or procedure lasted, the harder it got. I felt like I was going to fall over, and I was afraid I’d be cut by the dental implements. I was intent on holding still, but I was so distracted by the feel of my teeth being worked on, that I often felt nauseous. I literally felt sick, whenever I was leaned back in that awful chair, forced to look into the light.

When I’m off balance, to this day, I have to hold my head a certain way in order to feel right again — but moving my head this way and that was definitely not what the dentist wanted me to do. I remember many an exclamation of frustration and consternation, when I would move at just the wrong time, and the dentist would lose his/her angle and would have to start again.

It also made taking x-rays tough, when I couldn’t hold still long enough for them to position the film or take the shot. I remember some times when I messed up the shot and they had to try again… or I’d be in such pain and discomfort from the film holder digging into my sensitive gums. It couldn’t be over soon enough, and I dreaded the thought of getting x-rays.

Nobody seemed to understand what I was going through. Indeed, if you don’t have balance and/or sensory issues, it’s probably next to impossible to grasp the impact that such instability has on your head, your attention, your stomach. Just imagine what it would be like to ride a tilt-a-whirl for three hours, then get off and have someone tell you that you have to sit up straight and hold absolutely still for half an hour, or you’ll be cut with sharp scissors and/or end up looking really awful. That’s what it was like for me. But whenever I tried to adjust my head to regain my balance, I’d get out of position, and whoever was working on my teeth would get very upset with me. I couldn’t help it — I was just trying to stay upright. And not throw up.

I also had trouble coordinating my physical position with a mouth full of liquid — that was very troubling. There was something about having to concentrate on not choking on what was in my mouth that made it hard for me to sense the space around me, which threw my sense of balance off.

The talking made me nervous.
First of all, I couldn’t respond well, if my mouth was numbed. And second, I couldn’t really understand what was being said, because my thinking was so focused on keeping my sensory experience together. It took me a while to figure out a) that someone was talking to me, b) what they were saying, c) what it meant (I had to translate into pictures in my head), d) how I should respond, e) what I should say (I had to translate the pictures in my head back into words, and f) if what I’d said was the right thing.

Talking was usually at a minimum at the dentist, but when it happened, it was important, so the pressure was even greater for me to communicate, which I couldn’t do very well. It was all I could, to just sit still, let alone come up with a coherent verbal response.

And that, dear reader, is a relatively brief overview of the sensory challenges this Aspie kid had with going to the dentist. There have been times when I’ve toyed with the idea of having all my teeth extracted and just having dentures, but in reality, that’s the last thing I want to do!

Fortunately, I’ve figure out some ways to deal with the dentist, and I’ll share them now.

Dental Coping Ideas from Aspie-Land

Getting through even the most “routine” dental procedure takes a pretty strong act of will with me, but I can do it. I have to do it.

I’ve developed a set of specific, deliberate physical actions with my tongue, and I have a special breathing technique that really works. It suppresses my gag reflex, keeps me from choking, and (perhaps most importantly), it keeps my mind off the sounds of the drill and/or the cleaning pick. It also lets me feel that I have some control in the situation, which is an important psychological aspect of each visit.

How do I do it?

Basically, I position my tongue, so that it’s pressed against the back of my throat and flat on the floor of my mouth, I breathe loudly through my nose, and I make a conscious effort to either relax specific parts of my body, or I hold onto the arms of the chair and “stim” along the seams of the upholstery.

Here’s a picture of what I do, with my mouth and my breathing:

Mouth and Tongue Positioning to avoid choking and breathe during dentist visists
Mouth and Tongue Positioning to avoid choking and breathe freely during dentist visits

Using my Tongue to Suppress my Gag Reflex and Gain Control
The specific, deliberate physical action of pulling my tongue to the back of my throat and pressed to the floor of my mouth not only keeps my mind off the whine of the drill and the scraping of the cleaning pick, but it also gives me a greater sense of control in the situation.

How do you do it?

Pull your tongue to the back of your mouth, pressing it against your epiglottis (that little dangly thing that hangs down in the middle of your throat). You should feel a “wad” of tongue against the back of your mouth. Now, at the same time, press your tongue flat to the floor of your mouth. You should feel the tip of your tongue making contact with the thin line of membrane that runs under your tongue, connecting your tongue with the bottom of your mouth.

It might seem simple, but this basic action achieves a number of important things for me when I have to endure a trip to the dentist:

First, it blocks off my throat and blocks the way for any liquid to go into my airpipe. Remember, some Aspies have problems swallowing, and with me, I’ve always had an intense fear of drowning and/or choking.
Second, it keeps my tongue away from the machinery, so I don’t get nicked or cut. It also keeps my tongue from interfering with the sharp implements, so I’m not getting in the way of the hygienist or dentist while they’re working. Again, the more my tics and physical responses get in the way of the people who are working on me, the longer my agony lasts. So, keeping my tongue pulled to the back of my mouth lets me participate in the procedure as an equal partner who is involved, not some poor dweeb who is just being put upon.

Third, it gives me a single point of physical focus, on which I can put my full attention.

Lastly, and perhaps most importantly, it gives me the sense that I am in control of my situation, and that I am able to keep myself from gagging, even choking or drowning in the “runoff” from the cleaning/procedure.

Holding my tongue firmly against the back of my mouth and blocking off the fluid runoff from entering my airpipe is probably the most important thing I can do to relieve the anxiety of being in the dentists chair. If I do nothing else through the course of my visit, if I can manage to do this — and if I do it well — I can get out of the office in one piece without being completely wrecked.

Try it and see how it makes you feel — maybe you can try this with your sensitive kid and practice it with them… when you’re driving in the car, or a trip to the dentist comes to mind. You might also want to practice doing it with your sensitive kid(s)… maybe when you’re on long car trips and you’ve run out of things to do. Make it into a game, make it fun, and help them practice this move. It’s a simple thing, but like I said, it offers me a whole lot. Like sanity.

Nasal Breathing
The other part of this is a technique I call “nasal breathing” — it basically makes a lot of noise in my nasal passages while I’m breathing. While my tongue is pulled to the back of my mouth, pressed against my epiglottis, and held down low, out of reach of the cleaning/filling tools, I focus my attention on breathing through my nose. I breathe very slowly and I do it in such a way that it’s actually quite loud. Remember, I have constricted my tongue in the rear of my mouth, and I also constrict my nasal passages.

When I usually breathe, most of the “action” takes place inside my nose, and it’s quiet. When I inhale, I feel and hear it in the front of my nostrils. When I do nasal breathing, I focus my attention on the breath at the back of my nose, and in my nasal passages, and I breathe slowly while “constricting” (I don’t actually know if it’s possible to do that or not) my nasal passages and causing the air to make a rasping, rushing sound as it passes through.

I also count my breaths and take them very slowly — 1 – 2 – 3 – 4… and release them very slowly — 1 – 2 – 3 – 4.

This nasal breathing gives me something else to hear (that’s closer and more immediate) than the drill or pick, and it’s totally controlled by me. If I do it right and I put my full focus on my nasal breathing, I can all but block out the sound of the drill.

Conscious Relaxation

While I’m focusing my attention on my breathing and keeping my tongue in position, I can still get tense. My body has a mind of its own, sometimes, and no matter how engaged my mind is in keeping my tongue and breathing “just right”, I can still become physically uptight, so I need to consciously address that, too.

I focus on specific parts of my body to relax, like my feet and legs. My feet are good candidates for relaxation, because I can actually move them a little without making the person who’s working on me slip and injure me. I wiggle my toes to remind myself they’re still there, then I consciously relax them… and work my way up my body, from toes to feet to ankles to shins to knees to thighs… I’m usually so focused on my tongue and my breathing that I don’t have a lot of attention left over for my feet, but sometimes I have to focus on relaxing them, because I’m getting so tense, and I have to do something else with my brain for a while.

Stimming Relief
In a pinch, if all else fails, I find it helps to hold onto the arms of the chair and “stim” along the seams of the upholstery. I run my fingers along the bumpy edge of the seams, and I press my fingertips against the very end of the arms of the chair. Sometimes it alarms the hygienist or the dentist, but I reassure them that I’m fine. Also, they can see, from whether or not I’m stimming on the chair arm, if I’m getting agitated and taxed, and sometimes they’ll take a break. That’s a relief.

The Bottom Line
Visiting the dentist can be particularly difficult for highly sensitive folks and people on the Autistic Spectrum. But there are ways that I’ve found I can mitigate the effects of dental trauma, and keep my teeth in fine working order. My approaches are based on the assumption that even with hyper-sensitive sensory faculties, my brain can’t necessarily do everything at once, so if I deliberately focus myself on a sensation/experience of my choosing, I can “block out” the necessary evil of dentist visits. It’s taken me 40+ years to figure this out completely, but I now know that if I’m totally, wholly focused with all my undivided attention on one specific set of experiences, I can get through a trip to the dentist in one piece.

This approach has worked for me, many times. I continue to improve (and I continue to procrastinate and cancel dentist appointments, which is a really bad habit of mine that I need to break). But when I cannot avoid the dentist anymore, at least I have some coping mechanisms that help me get through that odious experience in one piece.

In Conclusion
I hope this brief work has given you a sense of what some of us Aspies go through at the dentist. I hope it heightens your sensitivity around what drives us over the edge, and what may help you and/or your Aspie kid to visit the dentist as regularly as possible.

In the end, I believe that we all have our “stuff” we need to get through… our challenges, our shortcomings, our foibles, our hurdles. Just because some of us have traumatic difficulties with the dentist doesn’t mean we’re crazy or deliberately trying to sabotage our health and well-being — we’re just really, really sensitive and we require different strategies to be successful.

Acknowledgments

Tremendous thanks goes to Temple Grandin for her amazing contributions to our understanding of sensory issues on the Autistic Spectrum. I’ve never met her, but her work has truly changed my life.

Olga Bogdashina deserves a big Thank You, as well, for her groundbreaking work on sensory issues among Asperger’s and Autistic individuals. She’s done us all a tremendous service in helping us understand the physicality of the Autistic Spectrum.

Thanks also goes to my friends and family who have persisted in loving and accepting me, through all the ups and downs over the years — many of which I can directly trace back to sensory issues.

Thanks also goes to N and Dr. R, my hygienist and dentist in the Big City, who was the first individual sensitive and sensible enough to not rush me through my dentist visits. I’m forever grateful to you both.

But most of all, thanks Mom, for hanging in there with me and making sure I visited the dentist regularly, when I was in your care. Thanks for being as resourceful and dedicated as you were, dealing with a conundrum like myself. I know it wasn’t easy, but it did pay off!

Note: This paper was begun in response to a post over at Aspergers World.

This paper is freely available for download at visualvox.wordpress.com. No payment is required.