Tag Archives: coping strategies

Mindfulness in Miniature

This is my first attempt at writing a post using voice recognition software. For the past week I’ve been “training” Dragon Naturally Speaking. Or maybe Dragon has been training me.

You would think that voice-recognition software would be as simple as speaking (although that statement in itself may be an oxymoron for many of us). But the software is sophisticated enough that there’s a fairly steep learning curve–both in learning the commands and in learning to “write” by speaking. So far, I’ve primarily been using it for work tasks, which are straightforward and often scripted in nature.

Curiously, I’m finding that voice-recognition software makes the writing process both faster and slower. Faster, because my typing and in particular my ability to spell is hampering my writing considerably. Slower, because before dictating each sentence I have to pause and compose the words in my mind in a way that is very different from typing.

There’s always been something about typing that has felt like a direct connection between my brain and the words. Now, something is short-circuiting that connection. I’ve reached a tipping point where the effort to put the words into speech in order to create text is less than the effort required to type those same words. And this new process–both the relative ease and the slowness of it–has me thinking a lot about things like mindfulness and intentionality.  Continue reading Mindfulness in Miniature

Changing Seasons and Sensory Sensitivities

These past few weeks I’ve had a sensory comfort zone the size of a postage stamp. There are a few things playing into my increase in sensory sensitivities* and one of them is definitely the change of seasons. Transitioning from summer to winter or vice versa is surprisingly demanding.

I think the biggest factor is the constant sensory adaptation. During the winter and summer, the days are pretty consistent from one to the next. It might be uncomfortably hot or cold, but at least my body knows what to expect each day and dressing appropriately doesn’t require a lot of forethought.

Spring and fall, on the other hand, are filled with unpredictable days. Yesterday was t-shirt weather. Today I have on sweats and a thermal shirt. Three days ago I left all of the windows open overnight because it was uncomfortably warm in the house. This morning I dashed out of bed to close the kitchen window, which was open two inches and letting a cold draft in.

With each temperature fluctuation, I find my body struggling to adapt. Too hot. Too cold. Over dressed. Underdressed. It’s hard to find that sweet spot–a consistent, comfortable environmental and body temperature. For the average person, this probably isn’t a big deal. I imagine things like dressing in layers and putting on or taking off clothing as needed is a good solution.

The problem with that strategy is that thanks to wonky interoception I often don’t notice when I’m too hot or too cold until it reaches a level of mild to moderate physical distress. At that point, doing something about it requires not just taking off or putting on a layer, but lowering or raising my body temperature to a comfortable level again. Simply putting on a sweater isn’t a complete solution to whole-body shivering. Continue reading Changing Seasons and Sensory Sensitivities

Conserving Spoons

If you aren’t familiar with “spoons” in the context of disability, take a few moments to read Christine Miserandino’s landmark piece on Spoon Theory before reading this post.

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Spoons, by nature, are a limited resource. They’re replenishable, but not on demand. Sometimes we get a new supply each day and sometimes we have to ration out spoons over many days before our supply is restocked. And there’s no spoon store, so forget going out to buy some if you unexpectedly run out.

Conserving spoons is an essential skill. The most obvious way to conserve is simply to ration. More things to do today than you have spoons for? Eliminate some stuff!

That works fine when your day has lots of padding. It’s relatively easy to cut out things like “go out for lunch with officemates” or “participate in 500-comment Facebook conversation.” You probably won’t miss them much. But what happens when you’ve got your daily schedule down to only the most essential items–literally just the things you need to do to make it through your day without getting fired, flunking out of school, or starting to grow exciting new cultures in the kitchen sink?

Not only do you have to start choosing among cutting out essential activities, but life can start to look pretty grim. Extreme rationing is not a viable long-term strategy.  Continue reading Conserving Spoons

What Acceptance is Not

Parent A: I love and accept my autistic child just as she is.

Parent B: So you’re just giving up on her?

Acceptance is not giving up.

 Parent A: I love and accept my autistic child just as he is.

Parent B: How can you just do nothing? My son gets at least 30 hours of behavioral therapy a week plus all-day preschool and adaptive sports and OT and PT and . . .

 Acceptance is not doing nothing.

 Parent A: I love and accept my autistic child just as she is.

Parent B: I love and accept my child too! After 5 years of ABA, daily social skills training, and a star-chart-sticker-reward-gummy-bear-timeout-management system validated by an elite team of MIT scientists you can’t tell she’s any different from the other kids in her mainstream class.

 Acceptance is not what happens after you’ve fixed someone to your liking.

 Parent A: I love and accept my autistic child just as he is.

Parent: You mean you’re fine with raising a feral child who runs wild through the streets in his underwear, smeared in the remains of the chocolate bars he eats for breakfast, lunch and dinner?

 Acceptance is not throwing away all rules, manners, education, skills and coping strategies.  Continue reading What Acceptance is Not

At the Intersection of Autism and OCD

This morning I got my triathlon race number: 336. My first thought was, “yes, okay, good” because 336 is a pleasing number. If I’d gotten 337, I would have had the opposite reaction. 337 is not a pleasing number at all. I don’t even like typing it.

What’s good about 336?

3 + 3 = 6

6 / 2 = 3

3 + 3 + 6 = 12 which is divisible by 3 and 6, also; the digits in 12 added together = 3

337, on the other hand, is a prime number. Some people love prime numbers, I know. I’m not one of them. I find primes frustrating rather than interesting because I can’t do anything with them.

The strength of my reaction to seeing 336 printed beside my name surprised me a bit. I’m still getting used to this latest eruption of OCD traits and how relieving or unpleasant they can make otherwise meaningless everyday occurrences feel.  Continue reading At the Intersection of Autism and OCD

Coping Strategies Survey

This week’s questions are all about coping strategies. Traveling, panic attacks, aging, job hunting, emotions, obsessions – it’s a great mix and I think we’re going to come up with a great big pool of potential strategies that we can all draw on when needed.

You know the drill–if you’re on the spectrum, either formally diagnosed or self-identified, you’re welcome to join in. Answer as many or as few as you like. Do it here or anonymously at Survey Monkey.

 

1. I am wondering if travelling is hard for all Aspies as they age or if it is just me?  I like my home at night and my own environment. I prefer to be as close to it as possible…and I get sick or upset if I stay away…my tolerance is two days from home max and two weeks to recover…Does anyone else feel this way? Does it get worse with age or in certain decades? more details here

2. Is liking or disliking foreign travel related to ability to pass for NT at home?

3. Do you experience problems with long flights? If yes, which aspects are most problematic? (which travel stages: e.g. planning, navigating airports, flying, unfamiliar surroundings at the destination etc – and which problematic factors: e.g. sensory overload, executive function issues, anxiety / panic attacks etc) How do you cope with long flights? (what are your coping strategies)

4. How do you cope with panic attacks in unavoidable situations that you can’t leave, such as during flights?

5. Do you find yourself getting more autistic as you get older? Did your coping strategies improve with age due to experience or psychological assistance (I shy away from the word ‘treatment’) or did they deteriorate over time because of a decrease in overall energy?

6. How do you cope with strong emotions, especially strong negative emotions, especially if you’re also alexithymic? How do you support someone going through a very difficult time emotionally (nothing practical to be done)? How do recognise what the feelings are, and how do you respond in a way that comforts the person?

7. How do you motivate yourself to job hunt? more details here

8. A question that is specifically for people who menstruate: do you notice changes during your menstrual cycle. With changes I mean changes in sensory perception, abilities to cope and/or compensate, EF, etc.

9. If you’ve been heavily obsessing about an interest for a while do you find you have to have a short break from it because it has got too intense?

10. Has anyone taken concerta/ritalin/other stimulant drug prescribed to help ADHD type symptoms and reacted very badly to them physically? What effect did it have on you in the short and long term?

 

Backstopping: Supporting the Autistic Person in Your Life

The Scientist and I moved cross-country a few years ago. We made the drive In four days and by the middle of the fourth day I was on the verge of shutdown. It was way past lunch time, we were out of snacks and we were driving through Middle of Nowhere, West Virginia.

When we finally came upon a place to eat it was a McDonald’s. Just the thought of eating fast food made me feel nauseous. I said I would walk the dog around while The Scientist went inside to order. When he asked what I wanted, I said “Nothing.” By the time he came out with a big bag of food, I was sitting on the curb by the car with my head on my knees, wishing I could teleport myself the final four hundred miles to our new home.

The Scientist sat down to me and said,”I got you something.”

Even though I was so hungry that I was light-headed, I couldn’t imagine being able to eat a burger or fries.

“I don’t want anything,” I said.

Undeterred, he reached in the bag and took out a container of oatmeal. When he opened it, I saw it was topped with fresh blueberries. He’d found the one thing on McDonald’s menu that wouldn’t totally repel me. I was so happy, I nearly cried.

What’s the point of this rather boring and uneventful story? It was the first memorable instance of something I’ve come to think of as backstopping.  Continue reading Backstopping: Supporting the Autistic Person in Your Life

Asking for Accommodations

Accommodations make life easier, but as Otterknot pointed out in a recent comment, asking for accommodations often sounds simpler than it is.

Why is that? Why are we so reluctant to ask for something that will improve our quality of life, our relationships or our ability to succeed at work or school?

The biggest obstacle is often disclosure. Asking for an accommodation or support means disclosing that we’re disabled. Accommodations are for disabled people, after all. For those of us who have spent a lifetime instinctively trying to pass as nondisabled, it can be hard to make the mental shift to being openly or even semi-openly disabled.

There is also the question of whether the other party will understand the nature of hidden disabilities. Unlike a visible disability, a hidden disability carries a certain burden of proof. So we hesitate, wondering whether the other person will believe that we really need this particular accommodation or perhaps dreading the amount of explaining and/or convincing that will be involved.

Finally, there is the specter of self-doubt. Do I really need to ask for this? Can’t I just continue to suck it up and power through like I always have? Maybe if I work harder, I don’t really need any supports.   Continue reading Asking for Accommodations

The Importance of Play

This morning as I was lying on the floor wrestling with my dog for her tennis ball–complete with fake growling on my part and some real growling on her part–I realized how important play is in my life.

Still. At the age of 45.

Since childhood, I’ve enjoyed playing board games and card games, solving puzzles and competing at (some) sports. Basically if there’s a game and I can potentially win at it, or at least enjoy trying, I’m there. But I’m also a huge fan of spontaneous, unstructured, completely pointless play.

Play in its purest form.

Play that arises in the moment and leads to unexpected, unbridled fun.

Which is probably why the assertion that autistic children don’t play “right” is so offensive to me. Why have autism researchers and therapists and clinicians forgotten the meaning of play? Worse, why are autistic kids so often described as not understanding how to play?

In reality, there is no wrong way to play. According to that bastion of knowledge known as Wikipedia, play is “a range of voluntary, intrinsically motivated activities normally associated with recreational pleasure and enjoyment.”  If a child is engaging in an intrinsically motivated activity and they’re enjoying it, then they’re doing it right!

The activity could be socially-focused, like having a tea party or goal-focused like disassembling a toaster. It could be something that appears to be completely pointless like watching a bug crawl on a stick or running in circles around the perimeter of the playground or studying the way the wind blows leaves around as they fall from a tree.

dogplay

Educational Play

But, the experts say, play should be educational–it should promote cognitive, social and physical development.

Kids are little sponges, absorbing knowledge every moment of the day. Filling their growing brains with new and important skills, many learned through play. But does play always have to promote a child’s development? Of course not. Much of the play that typical kids engage in is pointless fun.

But those poor autistic kids, the experts intone somberly, with their delayed development and clueless approach to socializing–they need to suck up every possible ounce of learning from every waking moment.

Thanks to this attitude–to the experts who have forgotten not only what play is supposed to be but what it’s like to be a child–autistic kids get social skills training disguised as play and developmental activities disguised as play and behavioral interventions disguised as play and occupational therapy disguised as play . . .

Except that these things aren’t play at all, because they’re not intrinsically motivated. The child is not directing the activity. The child is not choosing how to fulfill their needs or create enjoyable recreational activities. The child isn’t exploring the world around them in a way that suits them. They’re not discovering their passions and likes and dislikes.

They’re being led by an adult in a structured activity that has the goal of producing desired outcomes for which the child will receive extrinsic rewards. That’s the opposite of play. In fact, that’s the dictionary definition of work.

It’s commendable that clinicians and therapists want therapy to be fun for kids, but interventions disguised as play are a poor–if not a dangerous–substitute for actual play. Autistic kids have the same rights to a childhood as other children. Therapies and supplemental educational activities should be done in addition to playtime, not in place of it.

dandelions

More Than One Way to Play

Somewhere along the line we’ve taken the notion that play is a valuable educational activity and twisted it to mean that one specific type of play is valuable and all play–especially all play engaged in by developmentally disabled children–must be educational.

This is bit like saying “doctors are valuable to society therefore all adults should be doctors.”  If that were the case, we would all quickly starve and/or freeze to death because we would be homeless, hungry, and naked, among other things.

Society needs all kinds of people. It needs the kids who play house and school and tea party. And it needs the kids who take apart their toys or categorize their toys or couldn’t care less about conventional toys. It needs the kids who enjoy staring at clouds and the kids who would rather figure out the iPad by themselves than ask a parent and the kids who are content to spend their recess period digging in the dirt with a stick.

Notice that I didn’t say we need the kids who play in social ways but we also need the kids who play in other ways. I said and. This is an intentional word choice. The kids who play in goal-oriented, atypical or apparently pointless ways are equally valuable members of society. They are not the “but also” group, tacked on to the end of the sentence like second class citizens.

I was the kid who spent hours organizing her toys. I was the kid who wandered aimlessly in the woods. I was the kid playing board games alone in her room. By all accounts, I spent my entire childhood playing “wrong.” The funny thing is, nobody told me. My parents encouraged my interests, no matter how odd they were for my age. I learned to follow my passions and I learned to approach the world with curiosity.

That’s true to this day and that’s far more important to me than whether I make small talk properly. I wouldn’t trade my intrinsic motivation, my passion for self-directed learning or my love of discovery for all the social skills in the world. As a child, I intrinsically knew what I needed to learn; through play I built up the skills that have seen me through adulthood.

Because autistic children perceive the world differently, they need to learn different things through play than typical children do. All those hours I spent organizing my stamps and coins and baseball cards and Barbie clothes taught me about pattern recognition and rules–two things that I rely heavily on to navigate the world. Time spent alone in the woods taught me that quiet solitude is essential to surviving in a world that is unnaturally noisy to my senses. Hours of board games played against myself taught me about options and strategies and roleplaying and the countless ways a situation can be approached and still turn out okay.

We are born with an incredibly strong intrinsic motivation for exploring and adapting to the world around us. Forcing an autistic child to play in a certain way not only takes aways their intrinsic drive for exploration, it prevents them from discovering their strengths and finding ways to cope with the complex and often confusing world around them.

 

Sensory Sensitivities: Understanding Triggers

This is part 3 in a series about sensory sensitivities and atypical sensory processing. Read the other parts: Part 1  |  Part 2  |  Part 4

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While atypical sensory filtering is related to sensory sensitivities, not all unfiltered sensory data will trigger sensitivities. Remember the sounds I described hearing as I’m typing this? I’m not especially sensitive to any of them. I hear them and it’s hard to tune them out, but I don’t have a biological stress reaction to them. They’re just there and over the years I’ve grown used to having a lot of irrelevant aural data constantly pinging around in my brain.

In fact, I didn’t know until a couple of years ago that other people don’t hear all of those distinct ambient sounds when they’re engaged in an activity.

I suppose what’s happening in this case is my sensory gating is failing, letting the irrelevant sounds in. They get routed to an area of my brain that says, “oh, right, traffic, dog, sirens, rain, typing, closer traffic, harder rain, actually two dogs, footsteps upstairs” and on and on.

What should happen when I hear those repetitive background noises is something called habituation. The first time the dog down the hall barks, my filtering system might kick it upstairs to my decision making brain and say, “hey boss, is this something we need to worry about?” The decision making region would analyze the situation, decide that the dog is neither a threat nor any of my business, and say, “nope, ignore that from now on.” The filtering system would then flag that gate for closing, eventually tuning out the repetitive barking until I stopped noticing it.

Because that doesn’t seem to happen reliably, my conscious brain gets tasked with repeatedly  ruling out these sounds as unimportant. That’s distracting, but it’s not unbearable.  Continue reading Sensory Sensitivities: Understanding Triggers