Of Sleep Experts and Atypical Sleepers

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There’s an infant and child sleep equivalent of Godwin’s Law:  As the online discussion on sleep grows longer, the probabality of someone mentioning Healthy Sleep Habits, Happy Child approaches 1.  It’s one of those parenting books that has devoted a loyal and hard core following ready to swear up and down on forums across the internet how it changed their lives.

As a young parent with a baby who liked to rock and roll and day and party every night, I figured I’d try a few of the ideas.  Not his version of sleep training, which is one of the harsher methods, but his ideas on sleep windows and super early bedtimes.  As soon as 6:30 rolled around and Frodo’s eyes began to look a little glazed, we’d whisk him away from whatever he was doing and put him to sleep, after which he’d sleep beautifully.  Until he woke up.  At 10 p.m., ready to party.

And then there was the whole putting them to bed drowsy but awake thing.  There was only one problem with that:  Frodo didn’t get drowsy.  He had two settings:

ON/OFF

So much for that.

And then he turned 6 months old and the experts declared it was time to set him down in his crib and let his cries sooth him off to a peaceful, 12-hour slumber.  Except that for Frodo, being left to cry is about as soothing as a Yoko Ono record (I found out later there is a name for people who get worked up by crying: tension increaser).  I already knew how that one would turn out-hours of crying himself hoarse and concerned neighbors calling the police.  So I passed on that one.

And then I’d read about how all you have to do is keep things calm at bedtime and toddlers will naturally wind down and fall asleep within half an hour and I’d walk into the bedroom after our soothing, quiet bedtime routine and there would be Frodo, turning on the radio and jumping up and down on the bed to KISS.

I still don’t have any answers.  While a lot of the basic stuff makes sense for everyone-calming bedtime routine, consistent sleep and wake times, no screen time right before bed, etc.-there’s a lot of stuff that just doesn’t seem to work for some kids-kids with sensory issues, kids with delayed sleep phase disorder, even just kids with spirited temperaments.

I think of my husband, who as a kid used to lay awake in the dark past midnight, unable to sleep. I think of my son, a sensory-seeker and intense, active kid who for a long time just couldn’t settle his body and mind down.  According to the books I should have just left him to work it out on his own, but my gut told me he needed more help.  And now, at two and a half, he is much calmer at bedtime.  He not only falls asleep in a quarter of the time he used to, he even falls asleep on his own (with me close by, but on his own).  I still don’t know if I’m doing it right-he still doesn’t sleep through the night, never really has.  But my gut tells me to go with his unique personality, not try to shoehorn him into a one-size-fits-all approach.

The one and only sleep book that did help me was Sleepless in America by Mary Sheedy Kurcinka (the same author of Raising Your Spirited Child, which is also fantastic).  Instead of developing a single method for all kids, she talks about how different temperaments affect sleep and how to modify your approach to sleep based on your child’s temperament (she doesn’t mention specific issues like ASD, SPD, etc., but a lot of the advice applies, since many of us fall into the spirited category-active, persistent, intense, etc.)

That’s not to say that the sleep experts don’t have valuable information and advice-they do.  But I think that when it comes to sleep, like so many other things, sometimes the best thing to do is know your child and trust your gut.

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Autism Speaks Fear-Mongering FAIL

My apologies for the prolonged absence-still settling in after a wonderful trip to visit with family.

And no sooner had I returned to the blogosphere than my mind was blown by this editorial from Autism Speaks.  Not the article itself, which is the usual drivel about how you must give us teh moniez or autism will devour your children, destroy your marriage, and change all your Arabic numerals to binary.  It was the comments-777 and counting, standing almost unanimously against the fear-mongering and dehumanizing negativity that has long been this organization’s MO.  And that was just the start.

Yesterday, close to 250 people contributed to the This is Autism Flash Blog.  Self-advocates and parents.  Speaking and non-speaking.  All sharing their gifts, their challenges, their unique perspectives, all painting a picture of autism far deeper and more complex than a blue puzzle piece, far more positive than anything Autism Speaks ever wrote.

And then there was an article in the Huffington Post.  And Forbes.  And BlogHer.

Autism Speaks still makes a lot of money and wields a lot of power.  But I think this sudden onslaught of voices is the sound of the tide beginning to turn.

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This is Autism

This post is part of the This is Autism” flash blog.  Be sure to check out some of the amazing submissions there. 

UPDATE:  Looks like I was a bit too late with this one to submit it, which is what happens when you wait to write it until the kids are in bed on the day of the flash blog.  But do check it out.  Powerful stuff.

I am:

A wife.  A mother.  Unwaveringly loyal.  Giver of hundreds of hugs and kisses.  Anxious in crowds.  A history buff, a Tolkien fanatic, a lover of maps and globes.  Not good at organizing despite my professed love of cleanliness and order.   Deeply empathic.  Prone to losing things.  Not concerned with status symbols.  Constantly asking “why?”  Often gazing upwards at the sky, or the light filtering through the trees, or the birds.  Euphoric from the smell of lilacs, fresh laundry, garlic and onions cooking on the stove, my baby’s hair.  Too overwhelmed when speaking to make eye contact.  A good listener.  Often laughing.  Trying to get better at talking about my emotions.  Happiest when spending time with family.  Constantly self-censoring so that I don’t offend or say the wrong thing.  Calmed by motion.  Compelled to learn new things. Here for a purpose.  Autistic.

This is me.  This is autism.

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Autism and Imagination

Art by an Autistic Child:  Saurus by T.T.  Photo courtesy of Yvonne Thompson on Flickr

Art by an Autistic Child: Saurus by T.T.  Photo courtesy of Yvonne Thompson on Flickr

When we picture a child with autism playing, we picture cars lined up across the room-all except for one, and it’s been turned upside-down so the child can watch the wheels as they spin, over and over again.  And so often we think that if these children had any imagination at all, they’d be driving the cars around the room, stopping for imaginary traffic lights and making parking garages out of old boxes.

But I wonder if this way of thinking shows a limited understanding of what imagination is and how it can be expressed.

Imagination is defined as the ability to form new images and sensations that are not perceived through the senses.  That’s a pretty broad definition that leaves a lot of room for different kinds of experiences and expressions.

We don’t really think of arranging and organizing and creating structure as an imaginative, creative act, but there is a certain beauty in structure and order, in a mathematical proof or the structure of a double helix or even in a piece of code, and discovering or creating such order is, in a way, an imaginative act.  That the play of children or the hobbies of adults on the spectrum often involve such structured activities as lining things up doesn’t necessarily preclude imagination or creativity.

And I think we should be careful in assuming that repetitive, sensory play does not involve imagination.  When I was little, one of my favourite games was to line up my hardcover picture books on the floor and tap my wooden blocks against them (the sound they made was exquisite, to my ears anyway) sometimes stopping to arrange them.  If you’d seen me doing this, it would’ve been easy to write it off as a simple, repetitive self-stimulatory exercise.  But if you observed very closely, there was more to it than that.  I was playing pretend, imagining that the blocks were people going to school.  The sound and the repetition was part of the play, but not the whole of it.

Even things like fixating on spinning objects or light can involve imagination. There was a room in the house I grew up in that had wood-paneled walls full of knots and whorls. I used to sit and gaze at them, but I wasn’t just staring.  I was seeing people and things in the shapes and making up stories about them.  Sometimes I would stare at ceiling fans and imagine I was riding on the blades.  Or spend a long time looking at light shimmering on the water or through the trees only to make paintings and drawings of it later.

And then there is the rich inner life that some on the spectrum have, to the point of creating entire imaginary worlds.  When I was a kid, I created an entire world complete with maps, travel brochures, and a newspaper (you can imagine how thrilled I was when I discovered that Tolkein had created a world complete not only with rich history and mythology, but MAPS!!).   This is not something that is easily expressed, and so it very easy to overlook.

As some have argued elsewhere, it is so important that we recognize the creativity and imagination of people with autism, which often appears in ways we might not expect.  This is especially true of those we consider “low-functioning”.  Artists and poets like Stephen Wiltshire (who started out drawing imaginary cityscapes) and Tito Mukhopadhyay, both of whom need support with daily living, are considered something of a rarity, but I wonder if they are just the surface of a deep well of untapped creative potential.  Even engineers and mathematicians and programmers-people we don’t really consider creative-can use their imagination in their work.

There definitely is a tendency on our part to prefer things to be concrete and literal, and everyone has varying levels of imagination.  But I wonder if it is like empathy, in that what appears to be a deficit is really just a difficulty with expression, or a different means of expression.

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I’m Just Going to Nod and Pretend I Heard You

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Some people on the spectrum have central auditory processing disorder, or as I like to call it, that moment when your teacher spends ten minutes giving detailed instructions on how to build a snowman out of cotton balls and says, “let’s get to work!” and it suddenly dawns on you that you have no clue about anything she just said.  I can’t say for sure that I have it, but some of the symptoms are uncannily like my life.

It’s kind of like being underwater.  Words take seconds longer to register and are sometimes distorted to the point where they make no sense.   Someone says something I can’t quite make out and then it’s time to figure out how many times in a row I can get away with saying “what?” (usually not many).   And sometimes in the time it takes me to say “huh?” and it suddenly clicks and now I’m waiting for the other person to say it all again and trying not to jump in with the response.

And then there’s those fast-paced conversations where everyone is making all these witty remarks and pop-culture references and my eyes are going back and forth like I’m watching a tennis match.   This is especially tricky when there’s music in the background (and heaven help me if it’s something with auto-tune, because then I’m too busy trying not to claw my ears out).  Every so often I come up with something good-five seconds after the topic has passed, but I bet it would have been mildly amusing.

And of course there’s those dreaded multi-step directions.  As if gym class wasn’t terrifying enough without ten-minute spiels that you don’t remember a word of about tortuously complicated games involving Nerf balls, scooters, and traffic cones (which were actually pretty fun once I figured out what the heck was going on, but I digress).

I still have trouble with all of these things at times,  I’ve working on a few coping strategies-because, let’s face it, conversations are tricky enough without not having any idea what the other person just said.

Using a generic response while I process what was said.  Sometimes I might say something like, “right, well” or “yes, absolutely,” or even just “um yeah” while I process what was said and think of a response.  Some people have had success with repeating the other person’s words.

Listening for key words.   I find this strategy helpful in fast-paced conversations where I only need a general idea of what the other person is saying, or when only one or two words are needed to make the meaning clear.

Asking for clarification when given instructions. The nice thing about this one is that it’s usually taken as a sign that you are interested and engaged, as long as it’s not overused.

Seizing an opportunity.  When engaging in lighthearted banter (nothing Aspergery about saying it like that), I find it hard to keep up with the pace, so when I do find an opening, I run with it.  I’m that quiet person who occasionally says something funny, and it seems to work ok for me.

Asking for help.  This is something I haven’t used, but wish I had.  There is much more help out there than there used to be for people with auditory processing issues, especially in school and university   Don’t be like me and quit things you enjoy because you couldn’t follow the verbal instructions.

Of course, sometimes I just like to nod and pretend I can hear the other person.  This is my favoured strategy when someone gives me unsolicited parenting advice.

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Vaccinate Your Children

Diphtheria was once known as the strangling angel of children.   What started off as a sore throat and cough would worsen until thick, grey membranes choked off the airways, leaving the sufferer gasping and struggling for air.  Those who didn’t suffocate might be seized by paralysis or succumb to heart failure.  It’s name evoked terror.   A 19th century account from the Lancet describes it this way:

“When the surgeon is summoned, he finds the throat and mouth covered with yellow or brownish leathery exudation. Within a few hours a hoarse, barking cough, and a change in the tone of the voice are marked; oppression of the breathing supervenes; then paroxysms of suffocation, more and more frequent; the cough is stifled, and the voice also dies out.” [1]

Because of vaccines, few people know what diphtheria is.   What was once so feared is now just a word in our history textbooks.  We think it poses no threat to us.

We are wrong.   Diphtheria is still out there and still capable of deadly epidemics.  Even with the most advanced treatment, 5-10% of people who get the disease will die.  If the victim is under 5, the death rate jumps to 20% or higher.  All it takes is for enough parents to leave their children unvaccinated.

As of now, the number of diphtheria cases in the developed world is still close to zero.  But other diseases are already making a comeback.  Whooping cough and measles were once so common that few escaped childhood without becoming infected;  untold numbers of parents watched as their little babies were seized by coughing fits, turning blue from lack of oxygen.  Or watched as their children writhed with convulsions that left them permanently deaf.  And now, because of declining vaccination rates, this horrible suffering remains with us still.

Vaccines are a victim of their own success.  Because we don’t remember the terrible toll these diseases took, the very small risks of vaccination loom larger than the far greater but more remote risk of disease.  But we should dread these diseases far more than we fear the vaccines.

Elanor got her final dose of the DTaP-Hib vaccine the other day. It was not easy to watch my baby cry from the needle.  There is always that moment of doubt when I wonder what is being put into her and whether it will harm her.  But then I remember diphtheria.  And pertussis and measles and meningococcal disease.  And I thank God for vaccines.

Protect your babies.  Protect the millions of babies who benefit from herd immunity.  Protect yourself.  Vaccinate your children.

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For more information:

What Would Happen If We Stopped Vaccines?

Vaccine Misconceptions
[1] “Report of the Lancet Sanitary Commission on Diphtheria: Its History, Progress, Symptoms, and Treatment.,” The Lancet 73, no. 1850 (February 12, 1859): 169-170, http://www.sciencedirect.com/science/article/B6T1B-49HF759-4GB/2/07561f0d20eec18ff9b1ab19c39e8524. (h/t: History Compass Exchange)

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Are Aspies Self-Centered?

In his latest post at Inside the Mind of an Aspie, Aspie Guy is up-front and honest about how having Asperger’s makes him uncomfortable with bad news:

I really don’t know what to say. I don’t want to brush the bombshell off like it’s nothing, but I also don’t want to dwell on the negatives and reinforce just how bad everything sucks for this person. So most of the time I just get socially paralyzed and try not to react at all, which makes me look wooden and heartless.

He is spot on here.  Expressing sympathy in a way that leaves the person feeling genuinely comforted requires tact and skill, and it’s not something you want to get wrong, which leaves us standing there silent as we rack our brains for the right thing to say.  And it’s our nature to want to fix things, so if we know the words we say aren’t genuinely helping the person, we  often don’t say them.   On top of that, many of us have trouble expressing emotions.  All too often when I try to express to someone how much I care, my voice gets all stilted and almost mechanical, and nothing makes “I’m here for you” sound hollow and insincere like saying it as though you’re reading an instruction manual.  

He then goes on to write:

Then, sometimes my Aspergers kicks in and I just don’t seem to care. It’s horrible to say, but it’s true – often, my first reaction is to figure out if and how the news will affect me. I may be self centered, but that comes with the Aspie territory.

I’m going to have to disagree with him on this one, if nothing else because my aspie husband is one of the least self-centered people I know.   To be sure, everything from our difficulty expressing sympathy to our pre-occupation with our interests to having poor executive function and forgetting people’s birthdays makes us appear self-centered.  On top of that, our difficulties with theory of mind mean can make it difficult for us to understand someone else’s perspective.

The problem is how he defines self-centeredness.  If someone were to define self-centeredness as simply being focused on oneself, I would have no objection to that, because, well, it’s true.  It takes a lot of mental energy to get through the day and we can get so absorbed in our interests that we forget to eat, let alone call our parents to see how they’re doing.  But he goes one step further and equates self-centeredness with being selfish and uncaring.  And there is nothing inherent to autism that would make someone selfish and uncaring.  

Like so many other traits, self-centeredness in the form of not really giving a rip about anyone but yourself varies widely among different people and different situations, and it’s something that as humans we’re all affected with to some extent.  I have a feeling his reaction to his co-workers illness is not that uncommon, it’s just that he is self-aware and honest enough to admit to it.  We don’t usually have a deep connection with co-workers; that we spend so much time around people we don’t really care deeply about is just an unfortunate reality of modern life.  But even the closest relationships are affected by this kind of self-centeredness.  It’s the reason why parents drop their sick kids off at daycare when they don’t really have to or complain on Facebook that they had to stay up all night with their sick child.  Self-centeredness isn’t an Aspie thing, it is, most unfortunately, a human thing. 

Now, I have absolutely zero beef with Aspie Guy and would highly recommend his funny, honest, and insightful blog.  But the characterization of Aspies as self-centered in the sense of being selfish and uncaring is not only inaccurate but perpetuates one of the most negative stereotypes about autism. 

Some Aspies are selfish.  Many are caring.  Most are some combination of the two.  Just like everyone else. 

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