Having more than a vested interest, I tend to keep track of autism news. Two recent articles - here and here - have shown a genetic link to autism-like symptoms. There's still some controversy over what 'causes' autism but more and more evidence shows a common factor is in the genes.
Which, for better and for worse, means autism is part and parcel of our son. It is in him, a inseparable and fundamental fact.
That doesn't have to be a reason for mourning, and it certainly isn't a reason to celebrate. It just is - part of him from the ground up, so to speak.
And while it has to define who he is in many ways, I want his main identification to be whatever he wants it to be - reader, dancer, flirter (oh yes. He can work a room in a way that Valentino would envy and take notes on) or his apparent current one of 'raiser of daddy's blood pressure'. He is a fill in the blank who happens to be autistic, not an autistic person who happens to be fill in the blank.
I've said it a lot, and I will continue to say it: My son is very, very smart and very, very cunning.
Now, cunning may have a negative connotation to it - someone who sneaks, who cheats, who cuts corners and does barely-legal or just-barely-illegal things to get an advantage. And, don't get me wrong, there may be some of that in what he does.
Take school. Just yesterday, one of his teachers was telling him how much better he was doing in her class, even talking a bit to her. I went and got him and we were walking down the hall and he was sort-of chatting to as he does. He has a thing, where he will answer some kinds of questions if you cue him with the sound of the correct answer. This may, sort of kind of, be a bit of a cheat for him, but he usually answers the question with the correct answer out of a bunch of possibilities with the same start so I'm really not sure.
He was doing that with me on some stuff and that teacher heard him, and said, "Xander! You've been holding out on me! I'm gonna make you talk more to me!"
This may or may not be to his liking. There is a possibility he had been underdoing what he could do, so he wouldn't have to do more. I'm not ruling it out.
BUT - it may also simply be a survival mechanism.
Autistic people have a huge problem with sensory issues - I used this example to a friend a few nights ago. We were out in a parking lot after tae kwon do, and I was talking/bragging about my son and how well he did things with all the assaults on his senses. I pointed to the parking lot lights and the florescent lights back in the classroom, and said "You know we see these lights as solid, but they're really flickering super fast, too fast for us to see. But some autistics can tell that. It would be like almost continually living in a strobe light, every second." Add to that the flickering on a computer screen - which is why when you see a computer screen on a TV during a news broadcast interview you'll see diagonal lines skittering down the screen over and over.
Imagine trying to work on something like that. Or be in a place with continual strobe lighting. The agonizing headache, the eyestrain, the jitteriness.
Now I don't think Xander has that issue, or if he does it's to a much lesser extent. But I think he does have pressure sensitivity, where holding things that dig in - like the ridges on a pencil, or the edges of a zipper or a button - dig in more and hurt, because the times he's tried to hold those things, he's jerked his head away like you or I would if we grabbed a hot pan off the stove. Or with talking - perhaps the teacher's voice, as pleasant as it is to you and me, may have some frequency that hits him hard and odd. Or the room full of chairs and tables make the sound bounce around, so one ear hears the words a beat after or before the other, like a CD playing the same track at different speeds through different speakers. (I seem to recall a recent report that showed nerves impulses did travel oddly in autistic people's brains, but can't recall it for sure.)
If that's the case, why not fake being unable to do something that hurts to do?
Now of course, sadly, I can't know. He can't tell me. And many things that may be troubling him is simply things he has to learn how to do, if for no other reason than to find OTHER ways to accomplish that things. Say, pens instead of pencils.
What I call cunning may be survival, or even intelligence, a necessity to getting through a day. The challenge is figuring out which box he's in - won't because he can't; won't because it hurts; won't because he doesn't want to. Given he has already showed some flashes of cunning - taking out papers he thought would get him in trouble, like I talked about earlier - it's even more difficult, since I know he's smart enough, but is he capable enough, to do certain things?
Smart AND cunning. (Like he needed any more advantages!)
One of the books I've read recently had a line in it that stuck with me. It was about getting into running, and that inevitable time when you go out and do something you've done so much before - but this time it hurts bad, and it's a struggle to finish something you've gotten through with no trouble before. It said, "Sometimes the hard is easy, and sometimes the easy is hard."
That really struck a chord with me. I think, with a little modification, that may be the perfect description of handling an autistic child.
Of course, for parents of autistic children, our easy doesn't equal most other people's easy. Since Xander's nonverbal, an easy time might be, say, if he runs out of his room screaming "ARE YOU OKAY ARE YOU OKAY?" and rubbing his back. Means he was probably bouncing on a ball in his room- see the blog entry Weightless, on the first page - and managed to scrape his back on the dresser, or the bed. A fast mystery, easily solved.
There have been other times when he's come out from his room in that upset mode we've come to recognize as "I did something wrong and know I'm going to be in trouble." A search then ensues, with the fever and zeal of DeLeon's search for the Fountain of Youth, and more often than not the same success as well. Times like those, we can only be thankful it wasn't something as obvious as a broken ceiling fan or scribbles on the wall (check and check) and wait and see wait we find later. (Of course, then I have to wonder if when I punish him for a past action he really understands that or he feels I'm just mean...)
Other moderately easy times - once again, Xan banged his head at school this week. But this time it appeared to be a flat-out 'I don't want to do what you say' moment, since when it happened his teacher said "I'm telling Daddy" and he immediately said "Gonna calm down gonna calm down." (And then, in an example of the cunning I often write about, when I picked him up he went to his lunch box, opened it up, and got out some papers that had been stuck in there and put them aside, thinking one of them was a note to me about this) Didn't work, but I gave him points for slickness.
This week I was unfortunate enough to have a migraine. For those of you who never suffered from these agonies (and there's a precise reason people 'have' headaches but there are migraine 'sufferers'), a woman I knew in my teenage years who also suffered from them told me it was the closest pain a man could get to natural childbirth. Yeah. Roll that around in your mind for a minute.
Anyway, I got nailed by one and was fortunate enough Tracy was able to come home after I got Xander so I could go to our room, crank all the fans on high, and huddle in bed while waiting for the pain to pass. There have been times I've had to handle Xander while suffering from a migraine, and while many of those times have been easy and he's been awesome, there's been the flip side as well.
Times like that make it hard to do anything, much less decipher a cryptic clue. Much as I hate to admit it, there's often been times when I've forced to just tell him to wait until Mommy gets home and see if she could figure it out. We've been lucky these times were either not too important, since he didn't repeat it for Mommy, or he worked it out for himself.
These things, and a lot more, tend to make having an autistic kid like always having to parent while having a low-grade headache and on occasion a full-blown migraine - those times when you have no idea what's going on and feel helpless you can't help and sick your child has to suffer because you can't understand him. The easy isn't always easy, and the hard can be unbearable.
Then again, these hard times do make me cherish every step he does make towards being his own person. It makes every accomplishment wonderful and something to be proud of, and respect it so much more because I know it's harder for him to do that.
That's some silver linings you won't ever get in a migraine.
Is head-banging pretty common in autistic kids? I think so, based on all my personal experience, reading and researching, volunteering with autistic kids and talking to people. It may not be a 100% correlation - autistic = head banging - but based on all I know it seems to be a usual thing.
I wonder why? I understand Xander getting frustrated for many reasons and not being able to express it, or not understanding why something only bothers him (imagine being in public and only you being able to see or hear something that drives you crazy), or just getting fed up with something that would bother anyone and having to express himself, but I wonder why it takes that form, slamming the head down.
There is one benefit - as anyone who has witnessed this will say, it's very effective at getting attention. Perhaps you imagine head-banging as some old 80's-punk-rock/heavy metal thing, where kids would bang their heads up and down near - note that word - the stage. Yeah. From what I've seen, there's rarely contact, and when there is the banger usually takes pains to not have it happen again.
Not the way Xander can do it. It be can "gentle". I've had some times when something's happened to him and he's just overwhelmed by pain, or anger, or frustration, and he'll pull me down to him and tap his head to mine. One time he had his hand slammed in a door, another time he was really sick, things like that. He takes care to be gentle, for a head butt, and it's usually not too bad. It hurts a touch, and the more he does it the more likely I'll get a bruise, but he can control himself and I can live through it with usually nothing more then a dull throb while he calms himself down.
But there are times...I wrote he banged his head on concrete getting out of the pool. Hard, no pulling back at all. All the adults around him were shocked and scared, half expecting blood to shoot out of his skull like a hose. That time at Barnes and Noble in another post, you could hear the thunk of the skull on the floor, like a soft watermelon being thumped and I felt vibrations through the floor. I saw a young child slam his head into a long table so hard everything on it jumped, from one end to the next.
It gets its message across.
People who aren't used to this can be shocked and may panic when it happens, which if you only see it now and again makes sense. It's already happened a few times at school this year - once in computer lab and once in his therapy. Both times the teachers let him stop work.
Which, I'm fairly sure, was his main goal. And hey, if it works...
(I did something like this once, doing a fairly harmless yet effective faint. I had just been diagnosed with hypoglycemia, low blood sugar. It was found that a sudden large influx of sugar combined with a equally sudden action would make me faint. In middle school, a place I hadn't exactly set afire with my intellectual prowess, I had forgot about a history test. Failing it would have dragged my grade down to single digits. LOW single digits. So at lunch, I chowed down a whole bag of Red Hot candies, and when the test was handed out stood up to ask a question. For a second, anyway.
Got me out of the test.)
Xander is both smart and cunning, a dangerous combination. He knows that freaking some particular teachers out will equal stopping some assignment he doesn't want to do. I was told about it, and checked out the rooms it happened in to see if I could see anything that might have caused him problems with his sensory issues. I didn't. Doesn't mean there's nothing there but...
This tactic loses its impact with most parents, some sooner, some later. I don't remember the exact date this happened with me, but I remember it had been a long, hard day and he was banging his head on the couch arm. I sighed and told him, "If you're going to do that, go ahead and knock yourself out, 'cause I'm tired of it all and could use a break." Now I only notice it for punishment purposes, as in if I see you bang your head and I can tell it's because you're mad, now you can be mad and in trouble as well. He's mostly stopped - it still happens and he still gets in trouble for it, but it's almost always a sign of anger or frustration. Naturally, if it happens for pain reasons, we don't punich - but we also don't freak out, just checking it out and seeing why it happened instead of being shocked or scared.
The impacts have lessened.
But there are other, less obvious ones we still have to lessen.
If we hear about a head butting incident, we tend to investigate and see if there was some cause besides stubborness or not wanting to do something. Since we can't see or feel what Xander feels, we're pretty wide open in our guessing. We've been pretty lenient too, giving him the benefit of the doubt every time we could - the 'kicking the puppy' feeling being avoided. The problem with that is he may get away with stuff a lot.
So now he's been warned we're going the opposite way, only giving him credit if it's an obvious problem. We're doing this for several reasons, not only to get him to understand the get-out-of-jail (by headbutting through a wall) card won't work anymore, but more importantly, we're trying to get him to explain what's happening. Instead of using the head butt as a catch-all reason and leave it to us to understand, we're trying to get him to make us understand by telling us what's going on.
This will lead to misunderstandings, guilt, and more than likely some trouble sleeping for me, because I know I'm going to get some things wrong. But I'm doing it anyway, trying to get him to do more, to grow some, to get a glimpse into him and give him a chance to help himself AND us by telling us his problems. We hope the impact from his head butts will be replaced by the impact from his words.
However, I fully expect some more bruises on my forehead - this time from self-impacts.
Having a nonverbal autistic child - which, really, Xander isn't, since he CAN talk, but he isn't as adept as he should be for good, or even nominal, communication - is a challenge for many reasons I've posted about before. It's kind of comparable to having a baby who isn't old enough to talk - but in some ways, much harder and worse. You don't expect or need a baby to have a give-and-take conversation with you, but with a older child you do and need to.
The hardest thing I've had to adjust to with Xander is the hurting knowledge that much of his inner life will be a mystery to me, and that ranges from the superficial to the deep.
His birthday and Christmases are not fun times for me. To be honest, I've never been a Christmas spirit man. If I'd have been a Who, I would have taken vacation every December or gone crazy from all the cheer. That precedes my little guy. But with his autism, it's gone deeper.
You want to get your child things he likes. (And of course some socks and underwear style gifts, just to be a parent.) Other parents gets hints, clues, or outright demands for what their kid wants. With Xan, it's not so easy. Probably over half of the gifts I've tried to get him are metaphorically shrugged at, maybe politely tried for a minute, and then forgotten or ignored. Unless it's obvious, I'm probably going to be wrong.
Some things can be guessed at. He liked the first Tickle-Me-Elmo, so when the next version came out I got it. But the voice was just slightly different, a bit higher, a bit more obviously electronic. If I could tell that, to Xander it was probably like the difference between a cat's meow and a snake's hiss, and it just didn't fit. I was wrong, but at least I knew why. We thought he'd enjoy riding a horse at one summer camp, but a helmet was required and anything on his head bothers him immensely.
But other things I could have sworn he would like, he doesn't, and I have no idea. Same character or same kind of game or same kind of activity or whatever.
Because he can't tell me, all I have to go on is his reaction after the fact, and a guesswork game of why. Too loud? Too hard? Colors too bright? Figure not exactly like the character on television?
But even that, as annoying, painful and frustrating as it is, is nothing compared to the fact that I don't know my son like I want to.
Does he like football? He'll watch it with me, but wil leave a lot. Baseball? Soccer? Does he want to PLAY football, or baseball, or soccer?
I know he likes How To Train Your Dragon - who's his favorite character? Toothless, Hiccup, Astrid, Gobber? Why? I don't expect deep psychological bonding or identification, but I can't even get 'I like the color black' or 'He talks funny'.
Other parents can build a mental image of their child from their likes, their dislikes, what they want to do or be and what they don't want to do or be. They can use this for the most basic things, like ruling out gifts because of a wrong color or character. Or it can be used to shape their child - since he likes to read, let's discuss his favorite book; or since he enjoys this martial arts movie let's try them out on Tae-Kwon-Do. Or it can be used to know their child - he's going to be a athlete, a scholar, good with girls.
It's harder for us to get any information like that for the easy things, and often the things we do get to know aren't the fun kind.
Most of all, I miss the chances to have a give-and-take conversation with my son, where I can learn about him and know about him more and can explain what I know and feel. To have a chance to dig deeper and get something straight from him, instead of guessing at things. To be able to get the things I can use to help him, from getting the right gift to doing things he likes to perhaps getting him into things he'll resist but love later. And having him get me more too, of course - but I really want to get to know him.
He's my son, and I love him totally. But he is very much unknown to me.