Friday, February 4, 2011

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Bubbe's Seeing Red

I was reading a thread the other day on a group for families dealing with Aspergers, and I was astonished at how some things, sadly, don't change. Or at least change slowly. Ten years ago, they were putting kids in braces and casts to stop them from toe-walking. And apparently, they still do. Actually, things do change. Nowadays, when this technique fails to break them of their habit quickly enough, doctors use botox to help loosen the shortened ligaments. Yet another therapeutic use for controlled botulism.

Now, you're probably wondering why I'm upset to hear this. Well, other than the botulism thing. I'm upset because toe-walking has very little to do with the legs.

Now, don't accuse me of not knowing how to type. I've been typing since before you were born!

For kids on the autism spectrum, in the vast majority of cases, toe-walking has very little to do with the legs. It is more likely related to their eyes.

Imagine what life would be like if your visual perception went wonky and all of a sudden, instead of seeing a flat floor, the floor looks like a physioball. A small physioball. Or maybe it looked like you were walking down a steep hill all the time. Or maybe it simply shifts so you don't know WHAT you're going to be putting your foot down on with your next step.

How would you walk? On tip-toes? Probably. That way you won't fall off. You'll feel more stable, more secure in the knowledge that you only need a small bit of space to step on.

Believe it or not, this happens often for kids on the autism spectrum!

Other symptoms that are often vision-related include:
  • Running (not going out for a jog, but the kind that's sort of like pacing at top speed)
  • Finger-flicking
  • Compulsively turning on or off lights
  • Water and sand play, such as pouring the water from one cup to the other and back again for hours
  • Poor eye contact
  • Looking through their eyelashes or their fingers
  • Poor balance
  • Clumsiness
  • Awkward gait/robotic movements
  • Clinging to walls, especially corners, in unfamiliar or crowded areas
  • Tracing lines in the environment
  • Temper tantrums in public places (obviously, this could be a lot of things, but fluorescent lights and unfamiliar, unpredictable settings are vision-related triggers)
  • Flinches when you toss a ball to him, doesn't attempt to catch the ball. Ever.
  • Toe-walking (yes, I know I said that already, but I'm catering to people who want to cut and paste the bullet points)

Bubbe's getting old, so I'm probably forgetting some, but I think that gives you a good smattering so you get the idea.

We all know by now about SPD, sensory processing disorder, and we know that OTs have a whole range of great tools to work on many of the sensory issues. But vision is an area OTs typically don't touch, partly because the eyes are left to the traditional ophthalmologists, and partly because so often, people don't understand the role vision plays in these seemingly unrelated behaviors.

Okay, so if the OT doesn't deal with eyes, and the doctors are missing the boat, and leg braces are not the answer to toe-walking, what are you supposed to do?

First, go traditional. Make sure your child doesn't have any sort of eye disease. Let an ophthalmologist test his vision if he's able. Your ophthalmologist may diagnose a lazy eye and prescribe muscle-building exercises. The most common one is practicing crossing your eyes. Seems crazy, but this is actually a skill worth having! For a young child or a child who doesn't follow directions easily, just hold a favorite treat at the distance your doctor prescribes and when he looks at it with both eyes, you give it to him. (Just a tiny bite so you can get the most out of a gummy bear. It's no good fixing his eyes, only to rot his teeth!)

Next, have your child tested for Irlen Syndrome. This is so incredibly common for people with ASD and SPD. Well, to be honest, it's just common. WHAT?! You never heard of it?? That's okay. Not many people have. And yet, at least -- at least -- 50% of kids on the autism spectrum have it…one-third of all kids with learning disabilities have it…and approximately 15% of the general undiagnosed population have it! Yes, this does mean you have a one in six chance OR MORE of having it!

What is it? It's when your brain processes one or more colors of the spectrum wrong and you end up with distortions. They can be minor, non-annoying ones like the bright white paper of a textbook seems to twinkle and sparkle, but you can still read. Or, they can be severe, such as when you look at the textbook, you can't read it because the letters are boogying on the page like it's a disco nightclub. Oops! One fell off the page!


Here's the truly cool thing, though. It's corrected with colored glasses. Put the glasses on, the distortions disappear. Take them off, they come back. Just like when I take my glasses off, everything's blurry, but with them on, everything's clear. The only difference is that the color is the prescription. You can read more about Irlen Syndrome at

If you have your child tested for Irlen and that's not the issue, there is another very effective treatment available: prism lenses. These glasses are clear, but they're cut differently and cause the perception to shift… a bit to the left, to the right, up, down, whatever direction is needed to force the eyes to work properly and in sync with one another. This blog post has personal before and after prism lenses stories. Make sure you read the post and the comments.

When the world is flat (I know, Christopher Columbus, world is round, blah-blah-blah) and you can see people coming up to you from the side, and understand that there's a curb and that means step up (or down), and you can see an entire shop at one glance instead of item by item, and you can't see the strobe-like flicker of the fluorescent lights, and you can see your mother's face as a whole, instead of a series of parts, and the 40 watt bulb doesn't seem as bright as the sun, and you understand that the ball is not going to hit you in the face, and you no longer see the teeny, tiny details in the carpet or each water droplet reflect the light as it pours over your fingers, or every single grain of sand,
Life … calms … down.

Now, do you see what I mean?

Here's looking at you, bubbelehs!


RacersMommy said...

We've actually had my sons eye checked a lot, with our local Regional Center that was the first thing they tested. They sent us to a eye specialist, with the school as well. When they tested him again for kinder they tested his eyes. Though I've never heard of Irlen syndrome that is something to look into.

My 3rd child has a funny gait to her step and they found out its because of her eyes. She's got like three conditions that battle against each other that she needs thick (for her age) glasses.

Good blog Bubbe!!! Glad ur back at the monster house!

Tam said...

There are many reasons for toe-walking that have nothing to do with Asperger's.

This happens with the most prevalent hereditary peripheral neuropathy, Charcot-Marie Tooth disease (which I personally have, along with ASD), that is almost always overlooked in children unless they're in a family with adults that have already been diagnosed. The toe-walking in this case is caused by nerve damage which causes atrophy of some of the leg muscles. If it is not corrected it causes massive foot deformities, so the braces and the botox are absolutely needed in some cases.

Mild CP can also cause toe-walking, and stretching those tendons is absolutely warranted. And those are just two examples.

Besides, if someone has toe-walked exclusively for a long enough time certain muscles will atrophy, and the pull of the Achillies can actually cause a good deal of pain, which just adds to a child's problems. Even in the absence of other problems, PT and/or braces are warranted in such a case just to get those muscles working again and lessen pain levels.

I don't know what program you were watching, and your theory about kids choosing to walk that way because it feels safer hay has warrant, but assuming that everyone on the spectrum that's toe-walking is doing it just because of their eyes is a bit of a stretch. There are situations where the bracing and the botox is needed, necessary, and in the child's best interest (though botox is used as an absolute last resort by any Dr worth his salt).

Big Daddy Autism said...

Thanks Bubbe. I'm going to look into this Irlen Syndrome.

Bubbe said...

RM, Standard tests don't uncover these visual distortions! It's important to start with them so you can catch things like in the case of your 3rd child, but then if there are still problems, it's time to go to the "other" eye specialists.
Tam, you're absolutely right there are many physical causes of toe-walking. My childhood neighbor had muscular dystrophy and the first sign was toe-walking. I think you'll see that I'm writing about sensory issues for people on the autism spectrum, here, though, since this site's focus is SPD and ASD. Thank you for sharing additional information.
BD, you always were such a good boy!

Megs said...

I am so glad that there are other people who get irritated with all of the "treatments" out there for toe walking. I STILL walk on my toes at 30, no it hasn't really hurt me. Occasionally my heels hurt, I stretch them regularly, it goes away. Growing up the school nurse sent for me EVERY year, watched me walk, attempted to get my mother to do something about it. My doctor was full of a lot of common sense though, and realized it wasn't hurting me in any way, so showed me how to do an excersize while walking up the stairs to strengthen and lengthen my Achilles tendon. I do wonder about that Irlen Syndrome because some of the other things you mentioned I have issues with as well (books are almost always sparkly and the ground does not always seem flat, when I know it is). I have seen some of those braces and such, and I think a dose of common sense would be more useful... just my two cents.

Bubbe said...

Megs, Irlen screeners are everywhere, plus there's a self-test on the site. Check it out. You may discover that (I'm making guesses here, since I don't know you) you have less headaches/nausea, read for longer, sleep better, feel calmer, enjoy new outdoor activities that seemed horrifying before, etc. The person who first taught me about Irlen Syndrome became an avid hiker after she got her orange glasses because she could finally see the contours of the ground.

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