October 2012 Links

I'd hoped to post these before October was over, but Hurricane Sandy slowed me down a bit. Nonetheless, here are some interesting links I've run across in the past month.

In other news, we've received final legal approval for our autism app designed to help parents understand signs and symptoms. Hopefully it will be available in the iTunes store later this month (for free, of course).

Judged

Some of the looks we get:

  • "Why is your child still in diapers?"
  • "Why is your child screaming and writhing and not listening to you at all?"
  • "Why is your child talking nonsense and making weird sounds so loudly?"
  • "Why isn't your child acknowledging my child?"
  • "Why won't your child respond to me?"
  • "Why is your child lying in the middle of the floor?"
  • "Why is your child making that high-pitched screech?"
  • "What is wrong with your child?"

There we are, in the middle of a crowded cafe. Should've known better; C often has a hard time in group situations unless there is a quiet corner or other safe spot to which he can retreat. Still, we've been housebound for days because of Hurricane Sandy, and it seemed like a good idea to try to get out for a bit.

Wrong. It wasn't pretty. So, we pack it in before we even get our food or coffee, and carry a still-screaming (and hitting / kicking) preschooler back home. Once home, however, there's our little guy again. Bright-eyed, all smiles, humming his favorite song…peaceful and happy in our quiet apartment. And there we are, bedraggled and a little heartbroken…and feeling very judged.

I don't fault people for their stares. They don't know what's going on. They don't know why our son has suddenly and inexplicably gone off the rails, why his tantrums are so…weird, or why we look like we're on the verge of a nervous breakdown. They don't know that this isn't a normal toddler meltdown because it carries the emotional freight of fear and anxiety that Every Day Will Be Like This Forever.

In short, they don't know it's autism.

I imagine that once we've gone, they go back to their pleasant parental chatter while their little ones return to their joyful play. Maybe they think we're terrible parents. Maybe they know something is different and think, "I'm glad that's not me." Or maybe they don't really care.

All I know is that in the moment, when we're struggling to regain some semblance of normalcy, their looks bear down on us. I want to ask them to look away, to give us our moment, to leave us alone.

That's completely unreasonable, I know. It's not their fault; they're not doing anything wrong.

But neither is my son.

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Sleep, Please.

Like many children with autism, C has sleep issues.

Lately he's been waking up in the middle of the night, completely out of control and unable to settle himself. Getting him to sleep has also been more problematic than usual — and that's saying something!

After bath, I swing him in my arms to settle his vestibular system; it helps calm him, but since he's nearly 40 lbs, and he really likes to swing, it's no easy task. I give out at about 50 swings and need to take a break. (We're looking into a doorway swing.) We've also taken to letting his twin fall asleep in our bed, since C's nighttime freak-outs were frightening him.

If C wakes up in the middle of the night, S will often hold him across her knees and rock him back and forth, sometimes for 1-2 hours. Needless to say, we're pretty trashed most days.

Still, there are bright spots: hearing about our ongoing sleep issues, a good friend — who also happens to live across the street — sent me the following text:

"I will have my phone next to me throughout the night — if you and S would like a hand anytime, text and I will come to your pad."

I may not take him up on the offer — he has a family of his own! — but I'll sleep easier knowing we have friends like this.

Concerns About the DSM-V

dsm As always, Emily Willingham does a great job illuminating concerns about proposed changes to the DSM's criteria for diagnosing autism. With the goal of reducing false positives (people diagnosed with autism who don't actually have autism), the new criteria might actually exclude a not-insignificant number of people who actually do have autism. This begs the question, which is worse: false positives or false negatives?

I've read conflicting accounts as to the potential impact the new criteria might have on diagnosing autism, but one thing is clear: there's a lot of confusion. And where there is confusion, there are bound to be problems.

Wouldn't it be better to treat someone who has issues that may or may not add up to autism, rather than deny treatment to someone simply because the new criteria are vague and open to broad interpretation?

In her conclusion, Willingham makes a fascinating proposition: perhaps the goal of trying to affix a label or specific diagnosis is in itself problematic.

In her words, "We all have gaps that need mitigating. If we addressed specific gaps instead of wholesale labels, we’d all overlap with each other in some way, for anxiety, attention deficits, compulsive or obsessive or impulsive behaviors, depression, mania, intellectual disability or learning differences in specific areas, or addiction–and it would be a lot harder to stigmatize what we have in common, regardless of our overall neurobiology. Furthermore, we wouldn’t have to worry about applying lists of criteria that result in the wrong labels or therapies for the wrong people, or–worse in my mind–overlooking entirely the people who need help and support."

Well put. Read her full post here.

Fear Itself

Losing one's hair can have its advantages: in my case, it's been accompanied by the understanding that some emotions are mostly useless and often harmful. Here I refer in particular to regret and fear.

As parents of a child on the spectrum, we regret not noticing the signs earlier, or losing our temper, or feeling ashamed. We fear a future of loneliness and despair, of financial ruin, or simply the bullies lying in wait.

But that's no way to live. I try to learn from my regrets and move on quickly. As the Buddhists say, acknowledge the thought like holding onto a balloon momentarily, then let it float away.

As for fear, I can only do so much to control what could or might be, and dwelling in anxiety often means missing all the good that's happening here and now.

I was inspired by this excellent post. Give it a read.