Personal hygiene has never been my boys’ strong suit. For one thing, they have yet to accept the premise that “wet” does not mean “clean.” If I want them to wash their faces, I have to specifically mention a cloth, warm water and soap, and even then they might wipe only the parts they think are dirty. Many times, my kids claim to have washed despite never having turned the tap on.
Kids with Asperger’s really struggle in this area, as it’s just not something they care about. If you can get Justin into a routine, he’s generally good. But it has to be repeated enough that he does it by rote, cause he certainly doesn’t stop to think about why he needs to brush his teeth or wash his hair. It’s not about getting things clean; it’s about getting me off his case.
In that way, he’s not much different from his father. In our pre-kid days, Chris and I would eat our meals in the dining room, and he would wipe the table as part of the clean-up process. Once we had babies, we started eating in the kitchen — but Chris continued to wipe the table in the dining room, cause that was his routine. He wasn’t focused on cleaning anything; he was just wiping cause he’d been told to wipe. Argh.
When Justin first went to summer camp at age seven, the camp gave us a list with all the items he’d need. I diligently packed it all. I even threw in a facecloth, despite the fact that Justin had never used a facecloth and would be hard pressed to identify what it was for. I figured the counselors, who were used to dealing with kids with disabilities, would have some magical way of getting him to stay clean.
I’ve been sending the exact same bottles of soap and shampoo every year since. He’s now 11 and those bottles have never been refilled. I’m thinking of having them bronzed.
I sent those same bottles on his school camping trip a few weeks ago, except this time we forgot to pack his toothbrush. He never noticed, because he never took his toiletries out of his bag. He did manage to lose his towel, though.
I pity the fool who tries to get my son to explain anything.
Justin has the phenomenal memory that comes with Asperger’s, which you’d think would make it easier for him to relay the facts of a situation. But he also has the perspective-taking problems that come with Asperger’s (he often acts like if he saw it, you must already know about it, even if you weren’t there), which means he tends to leave out key details.
Take yesterday. Justin came home from school and said something about the “theme assembly.” I asked what that was.
“You know, the theme assembly,” he repeated. “We have one every year.”
This is his seventh year at that school. Not once has he ever mentioned a theme assembly.
After some more prodding, I came to understand that it’s an assembly wherein the entire school chooses a theme for the way they will behave in the coming year. It’s basically a forum for agreeing to a code of conduct. This year’s theme is love. Ah.
Back to his original story. “So at the assembly I got to sit on the benches…” (a privilege reserved for the sixth graders; here he looked at his younger brother in a neener-neener kind of way) “…and then we watched a pig rescue a goat.”
I waited for some context, but he had already moved on.
Brayden took pity on me. “We saw a film where a pig saved a baby goat from drowning,” he explained. “It was illustrating the love theme.”
It’s going to be a long year.
You never really know how Justin is going to react when it’s time to go home after being away at camp for a week. It can’t be easy going from camp (where he can stay up late, eat buffet meals and do whatever he wants) back to home (where he has to follow a curfew, make his own breakfast and listen to his mother.) The first year he went, when he was seven, he burst into tears and ran off to hide in the dorm when I arrived to pick him up. Feel the love.
But this year, pickup went exceptionally well: his bag was all packed, he smiled when he saw me, and he managed to wait almost a full 10 minutes before bickering with his brother. He even broke with tradition and brought his towel home for the first time in five years. Miracles do happen.
One of the reasons he loves that particular camp so much is because they hand out awards for just about everything. Seriously, everything. They’re all about making the kids feel like superstars.
Justin, for instance, was totally stoked about a pile of Styrofoam balls he’d colored and brought home. This seemed odd for a kid who rates doing arts and crafts somewhere below going to the dentist, so I asked him about them. He told me they were Pokeballs. I should’ve known.
“And guess what? I broke the camp record by making 27 of them,” he said proudly.
Then he paused. “Actually, I think the previous camp record was zero, so…” he shrugged.
Hey, everyone likes to be the best at something.
At bedtime the other night, Justin had a question: “Mom, how did you know I have Asperger’s?”
Caught off-guard, I mumbled something about how he’d always been a little different from other kids, and how eventually we talked to some doctors who helped us figure it out. Then I wondered why he was asking.
“Like, how do I prove that I have it?” he wanted to know.
It turned out that the topic came up at lunchtime one day because one of Justin’s classmates has a more severe form of autism and requires special attention at recess. When Justin mentioned that he also has autism, the kids didn’t believe him.
Justin does not have the classic kind of autism that comes with severe language delays and a withdrawal into an inner world. And he doesn’t have the Rain Man kind that comes with genius-level abilities in certain areas. He has the invisible kind.
Asperger’s is called an invisible disability because most of the time, you wouldn’t know it was there. Yes, Justin takes language very literally. And yes, he tends to miss obvious social cues. But on the surface, the gap between him and his peers is narrow enough that he doesn’t really stand out. Much to his chagrin, apparently.
Rather than hiding from his diagnosis and trying to blend in with his classmates, my son was actively looking for a way to demonstrate that he was different.
How cool is that?
We have frequent fashion fights in our household. Justin will generally insist on wearing whatever happens to be on top when he opens his dresser drawers. He will insist on wearing that outfit even if the pants are black and green, the shirt is orange and the socks are blue. When I suggest that he try to find clothes that match, he claims it doesn’t matter.
“You’re the only one who cares, Mom,” he’ll tell me.
Mismatched colors aren’t even the worst of it. My boys frequently end up with their shirt and/or pants on backwards and don’t even notice. (I can see getting a shirt turned around, but pants? Seriously?) After swimming lessons the other day, Justin came out of the change room with his track pants on inside out. Somehow he didn’t notice that the pockets were flapping around on the outside. Huh.
I realize that the total lack of fashion sense is a hallmark of Asperger’s. To Aspies, clothes are literally just fabric on a hanger. Their purpose is to keep us warm and keep our private parts covered. That’s it.
If he’s just hanging around the house all day, I let it go. But if he’s going out in public, I tell him he has to change. I try to explain that while he doesn’t care, other people will judge him based on how he looks. Even while I’m saying the words I know it’s ridiculous–why can’t he wear whatever he likes, fashion be damned?–but I also know I have a responsibility to help him adapt to societal norms. He won’t figure this out on his own; I have to show him how it works.
Which is hilarious, because I’m hardly one to follow fashion trends. I’ve been known to keep the same clothes for 20 consecutive years. I despise shoe shopping and never notice what people have on their feet. I own no makeup and wear no jewellery. I am the last person who should be giving fashion advice.
But even I have standards, and those standards include not wearing striped shirts with plaid pants. Or anything inside out. Or backwards.
Set the bar low…
What’s the right time to give a kid their own cell phone? When they start going places independently? When they reach a certain age? When they’re capable of paying for it?
More to the point: can there ever be a right time to entrust a $500 device to a guy who can’t even keep track of his water bottle/gym clothes/day planner?
I realize Justin’s organizational challenges are more than a character flaw; they’re part and parcel of having Asperger’s. His brain tends to misfire when it comes to managing resources in order to achieve a goal. (The irony is that he spends much of his free time making lists. Go figure.)
That doesn’t mean he’s completely irresponsible. I trust him to walk to and from school, to stay home alone, even to cook a simple meal. But I’m not sure I could ever trust him not to lose an item in his possession.
To be fair, it’s not just him. My older brother never leaves the house without coming back at least once for something he forgot, routinely buys two pairs of glasses at a time because he knows he’ll lose them, and cannot use his Apple TV device because he can’t find the remote. Yet he somehow became the director of supply chain management for a multinational company. So there is hope.
But back to the phone issue. Brayden recently mentioned some of the older kids at school have phones, and I said getting a phone depends on a combination of being old enough and being responsible enough. He thought about that for a second, then announced, “I’ll probably be less responsible when I get older, so you better give it to me now.”
One of the first things I learned about Asperger’s was that kids who have it generally see and remember details that other people miss. That’s a polite way of saying they zero in on completely irrelevant facts. They are human databases of totally useless information.
And they often miss the big picture. Justin is famous for missing the forest for the trees. A few years ago I repainted Brayden’s room while Justin was away at summer camp. The walls changed from yellow to blue — a dramatic difference. When Justin came home, he immediately noticed the 3×3 sticker of a new Pokemon character on Brayden’s dresser, but failed to pick up on the fact that the walls were a different color. Classic.
And while I know that hyperfocusing on details can be a useful skill, it can also be a huge pain in the butt. Years ago, when someone would ask him what he did on the weekend (just making small talk), he would say, “Jack came over at 1:26 pm on Saturday the 13th and we played until 3:42.” It took months of therapy to get him to understand that yes, everything he said was true, but that was way more detail than anyone wanted to hear.
It’s been a battle at school, too. Last year he was supposed to make a personal timeline of important events in his life — things like when his brother was born, when he started school, when he went to Disneyland, etc. He had all that — but he also noted the “birthdates” of 18 of his favorite Skylander characters. (We could argue about the definition of “important events in his life”, but that timeline was so full of what I would call irrelevant info that you could hardly read any of it. Ugh.)
Things are getting better, though. This year he was given a blank map of Canada and was told to label and color the provinces, territories and capital cities. He did all that — but he also added a couple dozen other cities, labelled every waterway, and even filled in the names of the bordering U.S. states and their capitals. It was still way too much detail, but at least it was on topic. I call that progress.
Now to see what his teacher calls it…
Lots of kids develop serious interests in a certain area, but kids with Asperger’s give new meaning to the term “obsession.” Justin gets so intensely interested in a subject that it colors every thought and conversation that he has. The fact that the people around him are all bored stiff by that same subject makes no difference.
His obsessions have ranged from his classmates’ names to Pokemon characters to sports figures. His latest one began when he was assigned a family tree project at school a few months ago (curse you Mrs. McAndrew!)
The kids were supposed to document at least 12 names on their chart. Justin is currently at 762 names and counting. He knows every detail of every marriage, birth and death in our family for the last 400 years, and he never hesitates to share that information. If I hear him talk about one more long-lost cousin, I will throw up.
I should also note that Justin writes lists. Endless lists. Piles and piles of lists. The kid is a serious threat to our nation’s forests. Early on we tried to redirect him by hiding the scrap paper, but he scribbled on his own arm, on his walls, even on my blank cheques. He used his finger to “write” on the carpet. He made letters out of PlayDoh. The guy needs to write.
So today I noticed a few lists of animal stats next to a book of facts about wildlife. A little while later Justin sat at the table with that book and read random facts out loud to me. I thought the tide might finally be turning. Could we really be over the whole family tree thing? Please God?
“A sperm whale can live up to 70 years,” Justin announced. Then he paused and looked up as if a thought had suddenly struck him. I held my breath.
Then he reached for a piece of paper and added, “Let’s put that on a family tree.”
You would think that after years of living with Mr. Literal, I would have learned not to assume he instinctively understands what most people instinctively understand. That I would realize he takes me at my word, not my meaning. That I would know to explain all those truths that seem self-evident.
But sometimes even I get tripped up.
The other day I was talking to Justin about the cruise we’ll be taking next winter. I showed him the deck plan of the ship and pointed out where our cabin was on Deck 2. Then I showed him pictures of all the cool things on the ship: the mini golf course and basketball court on Dec 12, the waterslide on Deck 13 that goes off the side of the ship and through one of the funnels, the freely available ice cream bar on Deck 11.
I thought he’d be thrilled, since he loves all that stuff. But he just looked glum.
“So is there anything cool on our deck?” he asked.
Then it dawned on me: he thought we weren’t allowed to go to any other part of the ship. He thought we were stuck down on Deck 2 while all the fun stuff was way up on top. Fair enough — he’s never been on a cruise ship. He doesn’t know how it works.
“Dude, the ship is like a hotel. You can go anywhere you want,” I pointed out.
His face immediately brightened. Then he stood up, wagged his finger in my face and said with a smile, “You didn’t tell me that.”
The things you don’t think you have to explain.
We’ve always been up front with the kids about Justin having Asperger’s. Justin knows he’s wired differently. He has even accepted that Asperger’s is considered a disability.
Early on, when Justin was in a special program to help him learn social skills, Brayden wondered why he didn’t have to go to the same program. We explained that Justin needed extra help to learn some things that Brayden already knew how to do (talk to people, make friends), just like Brayden went to speech therapy to get extra help with some things that Justin already knew how to do.
Later, Justin would say something brutally honest, not out of spite, but because it simply didn’t occur to him that someone would take offence. (“Not every honest thought needs to be expressed” was a tough lesson to teach.) So we’d have to explain to Justin that the words we say actually do affect other people, and then we’d have to explain to Brayden that his brother’s brain just works differently.
Sometimes that means cutting him a little extra slack. Like the time we were in a restaurant in Disneyland and a guy was going around making amazing balloon animals for the kids. Brayden LOVES balloon animals, but balloons make Justin anxious, so Brayden knew he wasn’t getting one. Them’s the breaks.
But there’s more to a person than some label. Just because Justin has Asperger’s doesn’t mean he never behaves like a typical kid. He’s perfectly capable of pushing Brayden’s buttons and acting like the big brother he is.
Brayden explained his perspective to his teacher the other day:
BRAYDEN: Did you know my brother is really annoying?
TEACHER: (amused) No, I didn’t know that.
BRAYDEN: He has Asperger’s. That’s a form of autism.
TEACHER: So what does that mean?
BRAYDEN: It means he’s more annoying than most people.
Because he has Asperger’s? Or because he’s your brother?
As if it matters.