The Denver Autism Wheel

Posts Tagged ‘autism

It’s a pet project of mine to learn more about the creative writing process (I’ve been a journalist, a blogger and a technical writer many years, but I have not tried my hand at fiction), so I got a book on writing believable characters based on personality profiles, and amongst them, I found a profile for a person with autism and nearly swallowed my gum when I read some of the assumptions (the book was written by a writer who is also a psychologist, BTW).
Now, before I elaborate on these assumptions, it is worth noting that the copy of the book I have was published in 1999. This was the year before Chris was born, and I say with some pride that a lot has changed in that time, regarding theories of parenting children with autism, psychological approaches to autism and our medical and scientific understanding of what it means to live with autism in a predominantly neurotypical world. However, there is a long history of research into autism which has confused the lack of ability to communicate effectively with the lack of desire to communicate effectively. These are historical misunderstandings about autism, and history is tough competition.
Assumption 1: the person with autism dislikes social rules, behaves disobediently and defiantly. It has long been my experience that it is quite the reverse. Individuals with autism appreciate social rules and try very, very hard to follow them. Rules make unpredictable social moments more predictable. And it’s that effort to adhere to social rules that often makes teens with autism the target of abuse and bullying because they don’t know that their peers expect them to follow adolescent rules that dictate they defy the adult rules. My retake on the assumption is this: the person with autism relies on social rules to help establish context but can behave unexpectedly if the rules he understands come into conflict with one another.
Assumption 2: the person with autism is not deterred by fear. Studies have established that a staggering majority (over 80%) of adolescents with autism also suffer from anxiety and/or depression. A lot of the anxiety I’ve seen 12 year old Chris display has to do with misunderstanding context or nonverbal cues. He has always hated attracting negative attention to himself, and that includes becoming a spectacle because he’s having a tantrum. It’s humiliating to him to lose control of his emotions in front of others. So again, it is my experience that the standard is actually the opposite of the assumption: the person with autism is routinely deterred from expressing himself or engaging with others because of fear.
Assumption 3: the person with autism is mistrusting and untrustworthy; lies. Chris does not lie. There are really good reasons for it. 1) Lying is breaking social rules, 2) Lying requires an understanding of what makes a plausible lie, and he lacks that skill (he tries to lie sometimes, and it’s completely apparent that he doesn’t know how to make a lie work), 3) Lying does not make logical sense; it requires a moral flexibility that is way too much work to be practical for him. And as for trust, he has to trust people to be honest and kind to him. It takes an act of deep betrayal to teach him not to trust a person, and most people don’t have the heart to do that to him. So, again, the observation that belies (hee hee) the assumption, is this: the person with autism is genuine, trusting others even to his own harm.
Of course, it was telling to read this profile, offered by a mental health professional over a decade ago. Keep these facts in mind:

  1. 1 in 88 children is affected by autism
  2. Boys are 4 to 5 times more likely to be affected
  3. If you know 7 people, the odds are that one of them is personally connected to autism

Part of the revelation to me was that these assumptions might still sound reasonable to the other 6 people who aren’t personally connected to autism. Considering the coverage of a recent school shooting, where reporters bandied the idea autism was a contributing factor, misinformation still abounds. Fortunately, our community of self-advocates, parents, providers and educators stepped up to dispel those myths. Individuals with autism are far more likely to be the victims of premeditated acts of violence than the perpetrators. Period. One of the reasons I keep writing and posting and acting as an advocate for Chris is to try to change these mistaken assumptions. We are all on a similar path, and the more we are able to reach out to others, the greater our understanding.

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I just read an article that states once again that parenting is a full-contact sport. Not only is it important to sign your kids’ report cards and drive them to soccer practice. It’s also important to look at their beautiful faces once in a while. Here are some of the benefits of eating meals with your kids.
1) You stand a better chance of being able to talk to them about what’s important…to them. The other night, I got to hear all about the advantages of playing Minecraft in “survival mode.” Who knew? It’s not that I’m going to go play the game or anything, but Luke wanted to tell me about what he’s up to, and paying attention to him means he understands he’s important to me.
2) You stand a better chance of putting something nutritious in their mouths. The article I mentioned at the beginning of this rant is in US News and World Report today. It explained that kids mimic their parents’ eating habits. OK, that makes sense, and it benefits two generations: parents, who eat better foods to set a good example for their kids, and kids, who base their eating habits on what they see their parents eating.
3) You get good food into everybody. I’ve written about this before, but the grownups eat the same thing the kids eat at our house. In one context, it sets the bar for me to make sure everybody gets their fruits and veggies and lean protein. In another, it keeps me away from processed, pre-packaged meals because, while they’re easy, Karl makes faces at them. Because they tend to be high in fat and preservatives, they aren’t healthy for his middle-aged adult body. If he doesn’t want it, I don’t feed it to any of us.
4) You get to look into their beautiful faces during the whole meal. I don’t know what your house looks like, but mine has people working, doing homework, playing musical instruments and sports, going to meetings, going to sleepovers…there’s not a lot of face time. Except at dinner (and most breakfasts). These moments are phone-free and distraction-free. We talk about our day, we talk about our meal, whatever. But we’re all there, face to face. I know the kids don’t see it this way, but as a mom, I cherish these times because Chris is 12, and I only get him for another…gulp!…6 years. So, another benefit is…
5) You know where they are during that meal. Not just physically, because, yes, we’re all sitting around the same table. But mentally, too. We get to hear about science projects, homework assignments, the gossip in the fourth grade classroom or the sixth grade hallway. That’s priceless intel when you want to get a picture of your child’s world when you’re not around. And: it sows the seeds that you’re approachable, in case they need to talk about something worrisome or bad. You’ve already established that their world is interesting.
6) You establish the expected behaviors for the kids when they are at the table. Social cues are not organic, particularly for Chris, but also for Luke. And manners count at the table. This is an important place for both the autistic and the typical kid to learn social skills together. And sure, they graze when they get home from school (a mouthful of cereal here, a handful of grapes there), but mealtimes are for sitting down, sitting still for the whole meal, eating with utensils, speaking clearly and quietly, and keeping your elbows near your body. That way, we are in better shape if we visit relatives for dinner or go to a restaurant. They already know how we expect them to behave when the food arrives.

ImageBy way of explanation, this is not a current situation in the AutieMom Kate family. But I’ve answered some questions lately about how to get an AutieKid good with the potty, so I thought I’d revisit some of those memories and share how we got here from there.

The typical age when kids train is 2ish. There is a LOT of wiggle room in that. Typi-kid Luke trained himself in one week, just before he turned 2. He and I had a deal: he could wear his Superman costume all day once he wasn’t in diapers (Superman doesn’t wear diapers, you see). That was all he needed: the right motivation. He was so excited about going to the grocery store or the library in his super suit, he was willing to learn to use the toilet.

AutieBoy Chris, on the other hand, didn’t learn until he was 4. Why? Didn’t have the motivation until then. I’m pretty sure he thought the rest of us were chumps, stopping our activity to go into a small room for a couple of minutes and then having to pick up where we left off.

So how did he get the motivation? The same way he learned to walk. We made him 🙂

There are 3 important facts to keep in mind when approaching toilet training:

  1. Kids get to it when they get to it, regardless of adult schedules or expectations.
  2. Once they get it, they get it. It seems like a big mountain, but you only have to climb it once for each kid.
  3. Unless there’s a significant medical reason for it, no kid wears a diaper to prom or high school graduation.

A couple of books were pretty helpful: topics like “potty training in a week.” The key there is the same as it is for a lot of milestones. Consistent expectations and taking the time to make a new activity a habit. A bit of a caveat: I was working from home at that time, so I was able to dedicate the time to this project. This method would be very difficult to complete successfully in a daycare setting without a dedicated adult, so keep in mind that it requires face time for several days (yes, days) to get this done. But again, once it’s done, it’s done forever.

One other qualifier in this explanation: Chris had very few sensory sensitivities or ritual behaviors. While it took him longer than Luke to get used to the new policy about the toilet, we didn’t have to contend with a rigid adherence to his established expectations, and he wasn’t skittish about the sounds or feelings associated with the process. We did have a calm and positive environment for toileting and took our time getting there, and I think that helped. There were no negative consequences for accidents; we just started the timer again and put the wet underpants in the wash.

The books advised putting the potty in a common area (I chose the kitchen: tile floors for easy cleanup if necessary) and spending most of the day around toileting activities. I got a stopwatch and some “big boy” underpants for Chris. I also got him a good supply of apple juice and water, and finger food snacks. 20 minutes off, 5 minutes on. That went on most of the day. Yes, it was boring, but it was necessary. Yes, we had some accidents. When that happened, we started over. It took until the afternoon to hear the little sound in the potty. We celebrated and started the timer again.

Part of the process is associating fresh air on the body parts with relieving oneself. Chris was used to going while the diaper was in contact with his skin. It was a new concept for him, and it took some time to realize that it was OK.

By Day 2, we were up to 35 minutes off, 5 minutes on. He got better at it, and I’d lengthen the time by 5-minute increments. This process went on for about 3 days.

Once he got used to the idea, he was OK with it, and it became a routine. By about Week 2, we’d taken the potty top and put it on the big toilet with a step stool, so he could climb up. From then on, he was golden. He didn’t have accidents, he didn’t look back, and in retrospect, it seemed like a much bigger deal than it actually turned out to be.

You might know (well, you might not, but I do, so I’ll tell you) that the age difference between the boys is a little over 2 years. Luke hit toilet training at almost 2. Chris at 4. Coincidence? Doubt it. There’s nothing like a little sibling rivalry to git ‘er done sometimes, and this AutieMom isn’t averse to using whatever tools are available. Yes, it’s likely that part of Luke’s motivation was to train himself at the same time as his brother. And yes, it’s also likely that Luke’s success niggled Chris enough to get his rear in gear, so to speak.

The secret of my success so far: I just stick my big ol’ head in the door and introduce myself.

Hi: I’m Autie Mom Kate.

So we went to visit the middle school last week. I’d been there before, to talk to the SpEd coordinator and staff and otherwise stick my big ol’ head in the door. But this was Chris’ first visit.

I’d hesitated to really talk up middle school. I remember it as one of the most unhappy times of my childhood, and to read some of the popular fiction in the libraries lately, I’m not alone. My desperate prayer is still, “Please, don’t let him get locked in his own locker. Please, please, let the kids be kind and compassionate. Please don’t let him come home crying.”

But Chris ate it up with a spoon. He followed the tour, asked questions, cracked jokes. Granted, it was our first visit, so it was after hours, and not as part of a big group. He told me afterwards he’s looking forward to Art, Computer and Math. Not a big shock there. But he’s also looking forward to something very important: standing on his own two feet.

The school district has made it clear to us that Chris won’t have the constant one-on-one para support he’s had as an elementary school student. And, as much as that’s intended to sound ominous, he’s really excited about the idea.

Ambivalent Autie Mom isn’t so sure just yet that his anticipation is well founded. But I’ll give you this: he deserves the right to try. I asked him a while ago if he thought he could finish his schoolwork on time if he didn’t have an adult reminding him to get back on task (he can start assignments, but it can be hard for him to keep his focus all the way to completion). I was very impressed that I didn’t get the “automatic yes” he thinks will get people to stop talking because he said “yes” already. He thought about it, and then said, “I don’t know.” For him, that’s not adolescent dismissal. That’s a considered response. And it’s honest. He’s never had to do it on his own, so he wouldn’t know. That’s why I want him to find out: he deserves to know.

I’m pretty sure he won’t be good at it at first. It’s like any new skill: riding a bike, swimming, finishing a whole book. When he started on any of these skills, frankly, he was pretty wretched at it. But he had to do it. With the bike, we insisted. He doesn’t have balance issues, so we figured he would get exercise and mobility out of the deal. And yes, he was dismal at first. Didn’t want to, it was too hard, didn’t like falling down or being sweaty…but he had to do it, so eventually he did it. And now: he rides, he swims, he reads. Just fine. He deserves that kind of…what, motivation? stubbornness? inflexibility? insistence? when it comes to his schoolwork. He’s just got to do it because he’s just got to do it. It’s not going to get easier as he moves through middle- and high school (hopefully college, grad school…).

And the kicker is this: now, he wants it, too. It’s not just us pushing. It’s him pulling, too. So my prayer has grown a little, to “Please, please let him get this, too.”

It’s hard enough just being a preteen (tween…whatever…see??), but then you have to go and add in autism and a bunch of your peers suddenly acquiring a social/emotional awareness around you, and you have a perfect stormof hormones, velocity and increased demands on your attention, perception, ability to think abstractly, and figure out what the heck is going on that makes an autiemom’s teeth rattle.

Eustacia Cutler (Dr. Temple Grandin’s mom) once opined that adolescence and autism are the stuff of the devil (see me quote that in my last post, too: think it’s been on my mind??) but no matter what you call it, Chris is in it, and now it becomes my job to do my best to see him through Transition #2.

Transition #1 (preschooler to elementary school) wasn’t fun. Chris didn’t speak much until he was about 4. His Kindergarten class had its “bridge” ceremony at the end of the year (which is a whole other kind of brain damage), and the teacher asked each member of the class what they might want to be when they grow up. Chris told her “a typer or a writer.”

I was there. I heard him clearly. I worked from home when he and Little Brother Luke were preschoolers. I am a writer. It warmed my heart that he wanted to follow in my footsteps. But he didn’t like hearing his voice amplified over the microphone, so he didn’t speak up. His teacher “translated” for him: “He says he wants to be a typewriter!” The parents all chuckled. A typewriter. Ha ha.

Aside from the absurdity that any child born after 2000 would even know what a typewriter is without checking Wikipedia on his mom’s smartphone first (feel free to roll your eyes, too), that was just one example of why Chris didn’t talk much. It took a long time for him to formulate his thoughts in the first place; then to have those thoughts mangled by an adult who wasn’t listening particularly carefully…well, it just wasn’t worth it.

Enter Transition #2 (elementary to middle school). Where we live, elementary school is K-5. Middle school is 6-8, and high school is 9-12. Chris talks a lot more now than he did as a Kindergartner. He has some “friends,” who know he likes Big Ben, history and science, and scary Halloween stories. He doesn’t know much about them, though. When most of his classmates gossip or play basketball at recess, he still likes to swing on the swings. He’s definitely at a turning point with his peers when “play” turns into conversation and there is a much higher emphasis on small talk than expertise.

He turned 11 back in December. He’s currently 5’ 4” and weighs about 105 pounds. His voice changed over the summer (so he now sounds like my adult brother, which freaks me out). He’s a good foot-and-a-half taller than the shortest kid in his class, and he’s as tall as his teacher. Puberty: meet autism.

My goal for sixth grade for him is to peel back the para support at school and let him get as much work done on his own as possible. Also: that he not get locked in his own locker. We started the transition process when school started up after the new year, and so far, things look good. His middle school staff understands that “it’s not cool to hang around with grown-ups,” so they fade para support as much as possible. Hopefully, that’s a step toward my first goal.

My second goal is a bit more complicated. I have a lot less control over whether it works out kindly for him. A big part of this transition is for me, too. Chris isn’t my little boy anymore. I can’t fix all of his problems anymore. I can’t get between him and the bullies.

And, of course, that wouldn’t be good for him, either. I shouldn’t solve all his problems for him any more than I should do his homework for him. Yes, it’s going to be a bumpy ride. Yes, we’re going to have some uncomfortable conversations in the next couple of years. Yes, he’ll probably be called into the principal’s office to explain himself.

But it’s not a race to adulthood. It’s a process. Transition #2: he’s going to learn to stand on his own two feet. It won’t be pretty at first. But it isn’t pretty for anyone, and keeping the bad guys away for him just teaches him to rely on me instead of himself. The (probably ugly) lessons he learns now will help him become more self-reliant and confident as an adult. My challenge is to back off a little and let him learn.

Nyhavn in Copenhagen

Karl and I took the Chris and Luke to Denmark in Summer 2009. We chose Denmark for several reasons. It was the first time the boys were going overseas, and we wanted them to see something different from what they knew in the Denver Metro Area. We wanted them to eat new foods, see new places, interact with new people. We wanted them to hear people speaking a language other than English. BUT! We wanted them to be able to get help in English if anything happened.

Imagine it: my 6YO NT and my 8YO HFA in a foreign country for the first time. What could possibly go wrong? Well, off the top of my head, they could get lost or hurt. They could behave inappropriately and start a fight with another child without knowing they violated a cultural norm. They could miss a train or a ferry boat and end up on the wrong side of a large city without somebody to look after them…the list of things to fear is fairly long. BUT! The alternative is to stay home. Never venture beyond our own porch, never taste new foods or see new places, never TRY. And that’s not an alternative I’m willing to entertain.

But why put yourselves through that, I hear you say. Didn’t Chris pitch a total fit on the plane with the change in air pressure and the length of the flight, or lose his mind the first time a train whistle blew too loudly for him, or lie awake all night because he wasn’t in his own bed? Autistic individuals crave the predictability of routine and ritual, you remind me, so why did you open him and yourself up to the potential for a 2-week stay in Tantrum City, Denmark?

It’s just exactly because of that, actually. Human beings, typical and autistic, love those old routines, the habits and patterns of day-to-day life. The unpredictable can be intimidating for all of us, but we learn to adapt. We all learn to adapt. Some learn to dive in with a sparkle in their eyes, and some learn to scream and flail until somebody takes them home. We have raised Chris to be OK with change because change is life. If he is to become a productive and confident adult someday, he has to know how to handle change with grace. Period. And as his parents, we have to teach him how to do that.

So. They got their passports. We made a fuss about that. Not many children in the United States even have passports, much less use them. We were going to use them: how exciting!

We read books and visited websites about Denmark to help establish context: there were castles and boats and Vikings (show me a boy who doesn’t like a good Viking story!) and trains and…bicycles! Fun fact: Copenhagen, Denmark, is the world’s most bicycle-friendly city. They have separate bike lanes everywhere they have streets. They even have separate traffic lights for cyclists in town.

We got Chris an inexpensive digital camera. He was really into taking pictures at that time, and we thought it would be a nice way to show him 1) that we trusted him to take care of a piece of electronic equipment that adults use, and 2) that we value his perspective of things. He took lots of pictures of staircase railings and restaurant table legs and sidewalk cracks and the fronts of trains. It was all good: he captured what he wanted to (and didn’t lose the camera, BTW).

We also brought along an iPod Touch with his favorite movies and music already loaded. Lordy love Apple for creating such an awesome, useful, pocket-sized device because it gave both boys something familiar to do on long train trips after they’d watched their hundredth quaint village slide by. It also helped us adults orient ourselves with the mapping and translator apps.

We stayed up late, we rode bikes across the city, we ate hotdogs and ice cream, we visited castles that were older than our country and spent an entire day in the original Legoland. And now, Chris and Luke have those memories forever.

Next stop: probably Grandma and Grandpa’s house in Washington State. Not every adventure has to be grand, but we do have to keep pushing the comfort zone and letting Chris get a feel for new experiences. And he gets to learn to handle new situations with us as his lifeguards, there to help if the water gets a little too deep. Sooner or later, he will be an adult. Autism doesn’t wear a sign, so he will look to all the world like a strong, tall, capable man. We want him to know how to act like one, too, and the only way to do that is to practice.

I had never paused to parse daily classroom tasks until I was faced with the news that my autistic son was underperforming and noncompliant in the classroom. It was an ongoing struggle at his first school, to figure out how to meet the odd gaps in ability he struggled with. He had loads of ideas but had difficulty expressing them. He understood facial expressions but reacted unexpectedly to them. He knew his times table back and forth, but he flailed every timed test in the classroom (“flailing” a test is “failing” but with additional arm-waving caused by distress and helplessness).

It wasn’t until we got to a school with good Special Ed support that we realized the problem was in the complexity of regular classroom tasks. Chris *knows* his times tables and can recite them till the cows came home. But. When he has to write them down, he has a whole laundry list of disparate physical and mental tasks to perform, in addition to remembering the right answers. He has to grip the pencil tightly enough that it doesn’t fall out of his hand but not so tightly that his hand hurts by the end of the test. He has to read and interpret each problem accurately. He has to remember how to form and then draw the numbers that make up the right answer. He has to remember to move on to the next problem after he answers the current problem. All of these granular tasks are constraints on his overall test performance because they are not automatic. He has to keep each task in mind the whole time.

Lumping these separate tasks into what, for typical students, is a single activity produced horrible results on those tests, not to mention a lot of frustration and anxiety on his part. He hated timed tests. There was too much to remember and coordinate. He would either freeze, staring horrified at the clock (picture Dorothy watching the hourglass in the Witch of the West’s castle…) or would simply put his head on his desk and refuse to participate at all. His teachers, who expected that a writing or math exercise couldn’t possibly be *that* difficult, would explain to us at conferences that his noncompliance in class was causing him to fall behind his peers, and no matter the *consequences* of his failure to perform, they still couldn’t get results.

What we saw were the consequences. His lost recess time meant extra fidgets when he did homework. His extra work meant longer intervals of sadness and anxiety. The problem was that the two sides of this situation weren’t playing by the same rules. Neither the teacher nor Chris had a concrete notion of expectations. As a result, both were flying blind, and of course, it was frustrating.

His current school staff gets it right. They administer the same test, let’s continue to use math as the example, in two ways. First, they test for subject knowledge. They do this by reading him the problems and having him answer orally. In this way, he can demonstrate that he knows the material. Period. The second time, they test for reading comprehension and writing ability. They have him read the problems and write down the answers. They can observe a variety of trends in this test: his ability to manage his time and complete the work, understand and follow directions, maintain his pencil grip and write legibly…but all of these observations are separate from determining whether he knows the subject.

The real key to Chris’ success is in his teacher and staff’s ability to analyze a given classroom activity and determine what part of Chris’ knowledge they want to assess. They then translate the results of their analysis into a concrete set of expectations which they give him. He knows what they want from him. They know what they are measuring and what they will receive from him. It has made all sorts of difference in his ability to experience success, demonstrate his knowledge, and also work toward strengthening his deficits. His ability to manage his own time has improved markedly, as has his confidence in expressing himself in writing. That means he writes more, and he writes more easily: working to his deficits through his strengths.

Was it easy? I have no idea; I’m not a teacher or a special ed specialist. It took dialog with us as parents to understand what we saw and knew about Chris. It also took planning and thoughtful deliberation to implement the changes. I can tell you that it was the right solution for Chris, and it has helped him learn to like school and trust his teachers and support staff. It has also helped foster his academic curiosity and willingness to learn and participate. And that’s huge.


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