Tag Archives: ASD

The Domino Effect

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IMG_1729 See that? That’s my Little Guy being as silly (and ADHD) as ever. Not a dinner goes by without him doing something completely and engagingly out of the ordinary. From running around the kitchen table twenty times to dancing in place on the bench to ceaselessly tapping his spoon on the table, he can’t sit still to save his life—and it bothers his older siblings immensely. You know, the ones who are particularly sensitive to noises, extra activity, and anything out of the ordinary. One or another of them will end up shouting at him at every dinner, but he just keeps on keeping on, happily expending his energy.

That’s the fun of having multiple children on the autism spectrum. Some are ultra-sensitive to their surroundings while others are completely oblivious. That usually leaves Katie and me with the unenviable task of trying to mediate between the two factions. It’s not always easy, as the two most averse to noise and other sensory excitement also tend to be the most emotional ones. So they respond with a level of anger and frustration that far outstrips the gravity of the situation—that is, the gravity that we perceive. For them, their younger brother’s acrobatics are thoughtless, careless assaults on their frayed nerves. But for him, being hyperactive is his default position.

And so begins the Domino Effect. Child Number Six’s hyperactivity sets off Child Number Four’s aversion to the unexpected, then Child Number Four begins yelling at Child Number Six, which sets off Child Number One’s aversion to noise, which causes Child Number Two to cover her ears and yell louder, which causes Parental Unit Number One to try to calm down Child Number Six, which only causes Child Number Six to increase his jumping, which . . . well, you get the idea.

A Wild Rumpus.

I wish there were some way to solve this, but for the moment I’m baffled. We could, I suppose, have dinner in shifts, with two kids at the table at a time. But that can eat up a lot of time. Plus, how will they ever learn if we don’t help them work through this stuff? So we’re left trying our best to keep the little jumping bean from pushing too many buttons while also trying to help the older ones practice self-calming and emotional regulation.

Of course, some days are better than others. There are those times when the Little Guy is more subdued, or the older ones are more forgiving. But then there are the times when all Katie and I can do is raise our wine glasses to each other and smile wearily as the wild rumpus unfolds.

And then there are the worst days: when we unthinkingly rush into the fray and end up fanning the flames instead of extinguishing them. That never ends well. We’re getting better at checking ourselves, but there are times when you just can’t help it—or when safety concerns demand a forceful intervention.

Welcome to the Vortex.

This, I think, is one of the hardest things for ASD parents—keeping calm in the midst of a swirling vortex of emotional outbursts. We love our kids so much that we hate to see them upset. But the one causing the upset is another one of our kids, whom we love just as much and who we know has a hard time sitting still. So we’re torn. Plus, as parents, we want to see our kids get along, or at least be civil to each other. That’s kind of hard when they all see each other as threats to their well-being.

So we try the best we can, dreaming of that magical day when all eight of us will remain at the same dinner table for longer than our average of five minutes. Seriously. It’s not uncommon for them to run out of the kitchen not long after dinner has started. Either they’re giddily chasing each other or they’re desperately trying to get away from the noise or they’re taking advantage of the chaos to sneak back to their video games.

Collateral Blessings.

As challenging and dispiriting as this can be, the Domino Effect does have one positive side effect. After the peeling-off, there’s usually one kid still hanging out at the table, and it’s quite common for a conversation to develop. It’s not much, and it’s not long, but it’s real contact. And in a big family like ours, those moments are important.

It never ceases to surprise me the kinds of topics that come up in these impromptu encounters. From our oldest girl’s questions about two girls in her class who seem a little too affectionate with each other (this is 8th grade) to our nine-year-old telling us about the math teacher who yells at his students, we learn a lot, and we can share a little. Sometimes we laugh together, other times we offer advice, and other times we commiserate. But we always try to listen.

As I said, it’s not a lot. But it’s something, and it’s precious. Even our most sensitive kids are able to hang around for a short time—even if there’s full-on chaos in the next room. When they know they have both their parents’ attention, the other stuff recedes into the background. They know we’re listening. They know we’re on their side. They know we love them. And love always wins.

So keep on jumping and stretching and dancing, Little Guy. You have no idea how much good you’re doing!

A Wibbly-Wobbly Ball of . . . Stuff

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Wibbly-Wobbly Ball

Before we start, take a look at this very short clip from Doctor Who, in which The Doctor explains the true nature of time. Trust me, it does relate.

That was pretty good, wasn’t it? Now for the explanation.

In a recent blog post, ASD guru and Aspergers role model John Elder Robison tackled the use of terms high-functioning and low-functioning when it comes to describing people with autism. Here’s what he said:

Much has been written about calling people high functioning or low functioning. With all respect to you and your situation, I don’t do it anymore and I suggest you don’t either.

It’s not accurate, and it’s degrading. . . . Suggesting that “you’re a real high functioning autistic” feels to me a lot like “you talk pretty good for a retard.” People say the former to me all the time today, and they said the latter to me quite a bit 50 years ago. I didn’t like it then and I don’t like it now.

Robison then goes on to talk about how dividing people up based on their “functioning” status misses the point of how autism works:

We now know that our functional level changes with time and other factors. As bright and capable as someone like me can seem, I can have meltdowns during which I become essentially nonfunctional and have no more usable intellectual capability that someone with an IQ of 70. It’s true that is not a lasting condition for me, but it happens, and when it does I would just as soon not be stigmatized for it.

As I said in my last post, my kids are showing me that autism can shift and swirl over time. Not for nothing is it called a developmental difference. It’s a matter of how and when a person develops social, cognitive, and communication skills. Some people develop more slowly or more unevenly than others. Some have persistent, nagging glitches in their development that affect them throughout their lives, while others overcome some challenges as they mature—only to find new challenges crop up. For many, it’s a mixture of both permanent and emerging attributes. So it’s awfully simplistic to reduce such a complex thing as autism to a question of high or low functional skills.

Forget the Spectrum.

But I want to go one step further. I want to suggest that along with abandoning the high- versus low-functioning distinction, we should scrap the image of a spectrum altogether. When we use this term, we evoke a kind of linear gradation, with some people lower down, or farther back, on the scale than others. But one problem with this approach is that people are assigned their place on that spectrum according to different criteria. Is it IQ? Is it verbal communication? Is it eye contact? Social skills?

Someone with limited verbal skills may well have an off-the-chart IQ. Or someone who can appear gregarious and outgoing in public may be masking significant social struggles, only to melt down in private. Where would you place each of these people on the spectrum? How would you decide? And most important, what purpose does it serve?

The Autism Ball.

Rather than talking about a spectrum, I’d like to suggest we talk about a sphere—a big ball of wibbly-wobbly, autism . . . stuff. There’s no low or high end. There’s no up or down or forwards or backwards. You just happen to be somewhere on that sphere, and your fellow autistics are somewhere else on it. No one is farther along than anyone else. No one is of greater value than another because he or she is “higher functioning.”

This is why I like the Doctor Who clip. It paints the picture of time, or in this case autism, as something that isn’t static but full of life and energy. And that makes it unpredictable: wild and mysterious, wonderful and dangerous.

So let’s imagine a ball that contains all the possible symptoms and manifestations of autism, all wibbling-wobbling around. Things like hand flapping, mind blindness, rigid thinking, sensitivity to loud noises, toe-walking, perseveration, narrow focus of interest. Imagine that ball also containing the comorbid conditions connected to autism: OCD, depression, ADHD, ODD, etc. Finally, imagine that this ball contains the positive traits of autism: laser focus, attention to detail, unflinching objectivity, a quirky imagination, a strong sense of justice, and an innate innocence.

Now, imagine your own ASD profile as a line running through the ball in one end and out the other end. As that line travels through the ball, it intersects with the various ways your autism manifests itself—not all of the traits, just the ones particular to you. No two lines are in exactly the same place, and no line is in a better position than another. They’re just there, marking out their own individual quirks and challenges, strengths and gifts.

High? Or Low?

All of this theorizing has a point. In an earlier post, I described how misleading the term “mild autism” can be. I gave some examples from my own kids of how difficult things can be for them, even though they would be considered high-functioning. As Robison said, people with high-functioning autism still have autism, and it still affects them profoundly.

We recently went through a rough patch with one of our kids, in which we saw just how much he keeps things hidden inside of himself, especially his awareness of how different he is and how hard it is for him to feel like he fits in. But on the outside, he presents as a clever, quick-witted, amiable boy. So while he seems very high-functioning, a lot of “low-functioning” stuff is going on underneath the surface: depression that can keep him in bed for two days straight, lack of empathy, misunderstanding of other people’s emotions, learning glitches, and an inordinate need for physical stimulation. He can navigate the outside world, but only for a time. Then he shells up when he’s home or alone. Where would you place him on the spectrum? Is he low-functioning or high-functioning?

Then there’s another one of my boys. You need only five minutes with him to “see” the autism: his odd gait, his lack of eye contact, his unusual speech patterns, his stimming, and his tendency to disappear within himself for a time. But hidden behind all of these quirks and tics is a very intelligent, sensitive child with keen insights into his own behavior and the people around him. Where does he fit on the spectrum? In the higher-functioning part of the line? Or the lower? Why?

Get on the Ball!

Mind you, most of this is irrelevant to me. I just look at them as my kids, with all of their strengths and weaknesses, their beauty and awesomeness, and work with each of them based on who they are. But it does make a difference in the universe outside of our home. It makes a difference when I attend IEP meetings or when I have to explain some unusual behavior to a friend or neighbor. It also makes a huge difference in the way society treats people with autism. If you’re a Bill Gates kind of autistic, you are given as many opportunities as you want. But if you’re nonverbal or if you’ve got some other trait that people might call low-functioning, you’ve got fewer chances to show just how awesome you are and what you can accomplish. And that’s sad, because you risk accepting a bleaker narrative about yourself and your potential than if you were given the opportunity to shine.

If we can get away from defining people based on their so-called levels of functionality, we can get closer to seeing each person as a precious individual with his or her own unique set of talents. We will stop assigning each person a value based on what he or she “contributes” to society. Each person is a gift, and you don’t assign a value to a gift based on its usefulness. You treasure it for what it is: a token of love from the One who gave it to you.

So get off the line and get on the wibbly-wobbly ball!

Serenity Now!

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As my kids are getting older I’m finding myself in an unexpected position. You see, five years ago, when the diagnoses were coming fast and furious, I went through somewhat of a crisis of faith. So many challenges were cropping up. Fears for my kids’ futures began to loom large. I grieved the loss of my vision for my family. But then came a period of relative calm. I came to a clearer understanding and acceptance of our situation. I resolved to fight for my kids’ rights at school. I determined that nothing would come between Katie and me as we took up the challenges that we faced. I had, to a large degree, made peace with it all. Yes, it was going to require extra work to help our kids be successful, but by gum, we were going to do it. We were going to be the autism family!

But there’s something about this autism thingy that took me by surprise. It shifts and swirls. It’s never the same thing year after year—or month after month. I’m finding myself surprised at some of the challenges my kids are facing as they get older. Some are completely new, while others are just more intense versions of what we saw a few years ago.

So while I honestly have made peace with a number of aspects of our family’s make-up, I’m also feeling more at war with others. Not war as if I’m fighting against my kids, mind you. More like a war within myself in terms of embracing our latest “new normal.” Let me try to explain.

Serenity Now . . .

I’ve made peace with the fact that my kids are going to be different. In many ways, I enjoy their differences—their quirky take on life, their brutal honesty, the innocence with which they approach life. I’ve also made peace with the fact that I’m going to be advocating for them and teaching them to advocate for themselves for quite a few years to come. Even though it sounds like a cliché, different, not less really does describe our kids as well as the way we look at them.

I’ve made peace with the fact that my family is going to stick out, and not just because there are so many of us. For instance, on those rare occasions when we go out to eat, I’ve come to expect the unusual. Like one kid will get up and start wandering around the restaurant because he or she can’t sit still. Or another will have to go stand outside halfway through the meal because of sensory overload. Or a third will end up curled up on his chair or under the table to avoid the noise. People will stare, but it doesn’t bother me anymore.

I’ve made peace with the fact that members of our extended family, well-intentioned and big-hearted as they are, won’t always get it. It doesn’t bother me that I’ll probably be explaining things until the day I die. It doesn’t bother me, either, when one of them offers unsolicited advice based on what works for his or her neurotypical child. It doesn’t even bother me that our kids aren’t involved in all the extracurricular activities that their peers enjoy. That’s probably because I’ve also made peace with the fact that we’re going to be spending more time in therapists’ waiting rooms than on soccer fields and tennis courts.

Finally, I’ve made peace with the fact that money will always be tight. With therapies and related health problems, our expenses are more than the average family’s. Plus, we’ve got six kids!

Insanity Later . . .

I haven’t made peace with the thought that our kids still have a long way to go. Now that our oldest two are well into adolescence, I’m getting a sense of the wild ride that comes when you mix autism with hormones. I’m also getting glimpses of the difficulties they’ll face as they lurch toward independence. I don’t know if I’ll ever be ready for those. Schools have behavioral counselors. Churches usually are welcoming, understanding places. But employers—well, that’s a completely different story.

I haven’t made peace with the other diagnoses that have come attached to our kids’ ASD. It’s bad enough that they have social and communication deficits. Do they really have to deal with crippling depression, intense mood swings, OCD, and emotional dysregulation? Does it really have to be so hard for them?

I haven’t made peace with the fact that many of my kids will find it hard to establish and maintain relationships in the real world. The thought of them being alone kills me—even more than the thought that some of them may never leave home. It kills me to think about all the people who will overlook how cool and kind and sharp and loveable our kids are. Our kids deserve to be loved!

Finally, I haven’t made peace with the way I let our ASD-dominated life close in on me. We don’t often do things as a family, because some of our kids will have a hard time. We don’t live too far from Washington, DC, with sites like the White house or the National Air and Space Museum. But a few of our kids simply cannot handle crowds. So we don’t go. Our hometown is surrounded by mountains and woodlands. But a few of our kids become very anxious when exposed to the sounds and smells of nature. So we don’t go. Just the idea of taking some kids to the movies makes me break into a cold sweat. I know there are ways to help them through all of this. I also know which ones might do well in a museum and which ones might do well in the woods, so I can always divide and conquer. But I just don’t have the fight in me. I’m often too worn out by the daily challenges of ASD life to even consider trying something new.

Dammit!

I know, I know. I’ll probably end up making peace with these things, just as I did with the others. I know, too, that God isn’t finished with me or my kids yet. But dammit, wouldn’t it be nice to catch a break every now and again? Does everything have to be so difficult?

I guess in some ways I’m like every other parent. I want the best for my kids, and I hate it when they struggle. The only difference is that my kids have more struggles than the average kid, so I have to be stronger to help see them through it.

And believe me, I will. Just let me catch my breath first.

Have Yourself an Aspie Little Christmas

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Welcome to the Most Wonderful Time of the Year! For the next month or so, front porches will be festooned with twinkling lights. Santa Claus will hold court at the local mall. Candles will glow at the table. Carols will resound at the spinet. And families will gather for feasts that will make all the Whos down in Whoville green with envy.

It’s that last one—the family gathering—that has me a little nervous this year. For the past twelve years, Katie and I were living in Florida while the bulk of our siblings were living in Maryland. But this summer, we moved back up North. Now, more than 32 relatives live within a one-hour radius of our home. Some are as close as the next neighborhood over.

Believe me, I love being back home. I’m so glad my brothers and sisters, as well as most of my in-laws, are nearby. They’re all good people, and we get along really well. But it’s been years since we’ve been part of a major family gathering, and a lot has happened in those intervening years. Mainly, we had a lot of kids who just happen to be on the high-functioning end of the autism spectrum.

If you know anything about autism, you know that people on the spectrum can have a hard time with sensory overload. Noises and crowds can make them shut down or act out. Changes in routine are unsettling. The smells, tastes, and textures of a holiday meal can be overwhelming. Even when they’re surrounded by people they know and love, they’re still surrounded. And that doesn’t always feel good.

All of this got me thinking about how different our family can be—and how different we may appear to people who come to visit. Mind you, most of our relatives are familiar with our dynamic, but there are a few outliers. Not to mention, new friends may end up dropping by. So, with no malice or prejudgment intended, I decided to come up with a few random guidelines for visitors to our home over the holidays.

A Field Guide to the Zanchettin Holiday Home.

  • Please remember that the Hallmark Channel is a mendacious purveyor of myth. No one’s dining room looks like that, and certainly not ours. We’re too busy running to therapy sessions and prepping for IEP meetings to dust every other day. Or every other month. Or ever.
  • No, the mini-trampoline belongs in the hallway, where we can keep an eye on it. And on its users.
  • If you find yourself trapped in a heavily one-sided conversation with one of the kids, remember that nonverbal clues don’t work. Use your words. Find some hook that you can use to change the subject. Unless, of course, you enjoy lengthy discourses about the relative merits of water type Pokémon versus grass types in the Kanto Region.
  • Please try not to make any references to Frozen. Not even oblique references. Don’t even say, “Let it go” in casual conversation.
  • Yeah, he spins around like that sometimes. Or hops. Or planks. He’ll be fine.
  • Don’t be offended if one or more of the kids disappears without notice. It isn’t you; it’s her. She’s probably getting overwhelmed and looking for a quiet place to unwind. Just shrug your shoulders and move on to another child. We’ve got six of them, so there should be plenty to go around.
  • Yes, that probably is the 75th time you’ve heard the theme song for the video game “Five Nights at Freddy’s.” It makes him happy, so we’ve learned to block it out.
  • Don’t be surprised if, when you ask one of the kids what extracurricular activity he’s involved in, he replies, “Therapy.” He’s being honest.
  • Yes, he often sits upside down like that, with his head near the floor and his feet in the air. Or athwart both arms of the chair. Or draped over the back of the sofa. And yes, he’s very comfortable doing it.
  • Yes, I know he’s taking a bath right before dinner. That’s his safe place when things get too noisy. He’ll be out in about an hour.
  • All compliments about our parenting will be graciously accepted by the management. All advice will be graciously ignored.
  • Why yes, I’d love another glass of wine. How did you know?

Aspie on the Verge

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So here I am, sitting in our local Music and Arts store, typing away on my iPad while my son spends the next thirty minutes in heaven. He knows we’re not going to buy him an electric guitar until he gets a lot better at his acoustic, but he still likes to come here to try out the electrics and to dream.

The thing is, by most calculations, he shouldn’t be here at all. He was rude to his mother. He was verbally abusive to his little brother and sister. And he hung up the phone on me this afternoon when I told him I didn’t want him playing a particularly violent online computer game. He didn’t come up from the basement for dinner, and he gave us some serious lip when we told him that he had to clear the table after he finally did eat.

So why am I giving in to his request? Why am I not withholding this highly desired activity as a consequence for his negative behavior?

Because the rudeness isn’t the whole story. In addition to being obstreperous, he was also jittery, depressed, and anxious. Even the dog, whom he always loves, gave him the heebie-jeebies. Just one whine from her, and he clenched his fists, hunched his shoulders, and covered his ears. “Roxie!” he barked back, “Stop it!” When his little sister turned on the TV just a little too loud, he jerked his head back, winced, and yelled at her. His eyes were red-rimmed and darted back and forth. His breathing was shallow. He paced back and forth around the kitchen, his muscles betraying the tension of a hunted animal waiting for the arrow to pierce him through. I knew that if I didn’t get him out of the house, he’d explode. And that’s never pretty.

I sometimes wonder if I’m just enabling his bad behavior when I do this. After all, it’s possible that he’s manipulating Katie and me. But this isn’t a nightly pattern. There are many evenings when he’s generally okay, evenings when he participates in dinner, does his chores without complaining, and shows at least a little bit of tolerance for his younger siblings. There are also plenty of times when he doesn’t get his way, whether he likes it or not. But still, every time this happens, I wonder if I’m being a bad parent.

I don’t know if I’ll ever get used to this. When your kid is on the autism spectrum, you have to be ready all the time for God only knows what. You never know what’s going to set him off. Maybe he had a tough day at school. Maybe one class was a little too rowdy, and it set him on edge. Maybe a classmate said something mean, and he kept it in, letting it fester, or maybe it was an innocent, joking comment that he misinterpreted. Maybe he was overly tired from staying up too late (which he does on occasion but rarely admits to). Maybe it was nothing special at all. Maybe the ordinary challenges of living in the world have finally gotten to him. Of course, we know some of the things that definitely will set him off, but there are so many unpredictables in everyday life that just about anything could trigger a melt down.

Fast Reset, Slow Reset.

By the time we were ready to go to the store, I was pretty much done. I had been home for a little more than an hour, but that was enough, after a long workday, to wear me thin. This kid’s aspie-on-the-verge shtick had drained me of what little reserves I had left. It was all I could do not to unload on him when he asked me to take him to the store. “Keep it together,” I told myself. “He didn’t mean half of what he said. Just give him this time to reset himself, and it’ll be okay.”

Sure enough, the reset began as soon as we got in the car. Away from the noise and triggers of the house, his mood shifted, and he became the chatty, relatively chipper kid he often is. I, on the other hand, was still rattled from trying to keep the peace at home. I never stop marveling at how quickly our kids can shed their symptoms, oblivious to the effects they had on the people around them. It’s just another example of the social challenges they face–not really “getting” the feelings of other people. So there he was, chatting up a storm, while I was trying mightily to cool down!

So now I’ve got a half-hour to regroup. That’s how much time I’ve given him at the store. I hope it’s enough. For both of us.