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How Did You Know Your Child Was Autistic?

By on May 21, 2010 in Diagnosing Autism

We get this question a lot, which is wonderful. It means that people are interested in knowing what to look for and ultimately, that’s what ‘awareness’ is all about. I’ve said it before and I’ll say it a million times, the only person who can diagnose your child is you. It’s up to you to recognize the signs and then and only then will your child have a chance at getting an official diagnosis and then the help that they need.

Autism signs are tricky because on the surface, they seem like childhood quirks… funny little things that some children do. However, if you add up all the signs… you may come to realize that they’re not quirks at all… especially if they persist longer than just a typical ‘phase’ should.

Since all children tend to exhibit different signs, or sets of signs, you can’t really go by my list as an exact set of signs to look for but it should give you a pretty good idea.

First was something we thought was natural, and I guess it still is. But now we realize he liked it a little too much, and that is swaddling. The idea is that the child feels held and confined as they did in the womb. That it comforts them and keeps them warm. Many babies love it, some do not. It doesn’t hurt them, or have any ill effects. However, in our case, Cameron seemed to like it a little too much and for too long. We, of course, never questioned it. It wasn’t even considered a sign… but looking back, I think it truly was our first sign… and it came at a very early age.

From the moment Cameron was able to sit up on his own, we’d catch him moving his toys from one side of his body, to the other and back again. This would happen for hours. Rather than play with a car, or flip things or examine them… he would simply move them from his left, to his right, one at a time. If he had 5 cars, he’d move them individually to his left side… then once all 5 were there, he’d move them individually to his right.

Eventually this turned to blocks where he’d position himself into a pile of blocks and then move them all to one side of his body. Then, individually, he’d move them all to the other side yet again. For a while, he’d even separate the blocks by colour! He’d end up with 3 or 4 piles of blocks all around him, separated by colour! We thought he was a child prodigy, doing this before he was 1.

After a while, he singled out the purple blocks as his favourite. He would actually dig through a pile of blocks in search of the rare purple ones. We just assumed that purple was his favourite colour.

Soon he moved on to cars where he’d pass them in front of his face, doing his ‘Practising Thai Chi‘ moves. If the car was big enough, he’d much rather flip it over onto it’s back and sit for hours spinning the tires, or even spinning the entire car around. Friends bought him big Tonka trucks, he found the wheels the most exciting, spinning them for hours. We got him a wagon, he’d flip it over and spin the wheels.

For the first 8 months, people thought we had the best baby ever. He never made a sound, never cried. In fact, we had to keep our baby monitors at full volume because when he woke up, he didn’t make a peep. No crying, no nothing. He even made a rather huge mess in his diaper one time and no complaining. He could be hungry, tired, waking up… it made no difference. As a newborn, he’d wake up every 3 hours for feedings in the middle of the night. Think he cried? No, I had to listen for small foot and hand movements.

This brings us to his first birthday where we were really hoping we could get him to dig into a chocolate cake and make a huge mess and get some great pictures. The problem? Cameron hated to be dirty! He didn’t really want to touch it and didn’t like having his hands covered in anything. So we put his hands into the cake for the sake of the pictures and he didn’t get upset but he sure wasn’t happy. We had no idea why.

After, we were hoping for his first word to come at any time but we waited and waited…. and waited. He was finding alternate ways of communicating instead, such as bringing us his cup, pointing at what he wanted and ‘humming’ to indicate he was hungry. It was a very distinct kind of hum, which many family members found funny and often imitated.

For a while, in between 1 and 2, we would find Cameron lining up all his toy cars or trains into a perfect circle around the living room, or making perfectly straight lines. I mean, not exactly perfect but way better than a 1 year old should be doing. He didn’t even know his shapes yet but he was doing this with some crazy precision. He would even go back to adjust some toys to make sure they lined up just right. Again, we were so impressed and thought he was brilliant.

As Cameron‘s second birthday approached, he became more and more secluded, shying away from hugs and kisses. He was also less willing to play with friends or even with us… being quite happy with just doing things on his own off in a corner somewhere.

From the day Cameron was off of baby food, he was a vegetarian… not by our choice, but his. He absolutely refused to eat any meat, even before having tried a bite. The same is true for fast food. He has yet to try a french fry or pizza. He simply knew, even at that young of an age, that he did not want anything to do with any of it. His diet has always been extremely limited by his own choice and no amount of forcing can make him eat the things he doesn’t want to eat. Eventually he even stopped drinking milk on his own, but he loves soya milk… especially the chocolate.

It turns out that even at the age of 1, he knew that the GFCF Diet was what was best for him. Some say that those proteins can act like a drug in Autistic children, much like heroin acts in adults. So at some point, he decided he didn’t like that feeling and just stopped eating the things that gave him those feelings. Even to this day, some ‘scientists’ are saying that the diet really doesn’t help and in some cases, it’s true. But it made a huge difference for us once we cut out bread and other wheat products from his diet. He knew before we did. Read the comments, you’ll see that parents don’t agree with every ‘study’ that comes out.

Finally, the biggest of them all is repetition and routine.  All of these things can be viewed as just quirks that kids have but these things lasted months, years…. still happening! And routine is huge as well, because all children need routine but Autistic children especially. The best example I can give is when we had to change our clocks for daylight savings time and Cameron‘s bed time was an hour later. He wanted to go to bed at exactly the time he knew it was bed time and not a minute later, much less an hour. He was 1, he couldn’t tell time. But he was so set in his routine that when we said no… it’s not bed time yet, he literally hit the floor in the middle of the living room and through a tantrum. He was so upset that we were breaking his routine.

It’s a lot to take in, there are a ton of signs. Chances are, if your child is Autistic, you may recognize some of these, all of these and maybe even some signs that I haven’t mentioned.

Recognizing Autism is not easy…. it’s particularly not easy if it’s not your child and this is why I say, only you (as the parent) can make that first diagnosis.  You’d be very lucky if someone else recognizes it before you… either that, or you weren’t looking for it.

The sooner you can get that diagnosis and start getting the help you need, the better the life your child will have later. So do not put it off, do not dismiss signs. Who knows, maybe they are just quirks in your child, but if not, you owe it to them and to yourself to be sure.

I can’t emphasize it enough, do not let anyone convince you that “it’s nothing” or “sometimes they just talk later” or “it’s just something cute he/she does” because it’s not their decision, it’s not their child. We heard it all from a lot of people, even our own family doctor… he told us he thought Cameron was fine, going for a diagnosis is a waste of time. You MUST LISTEN TO YOUR INSTINCTS. If you read any of what I said here and think it sounds familiar, get your child looked at. Don’t be afraid of the doctors being wrong, don’t be afraid of what it might mean… just get it done.

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The Lessons We Learn the Hard Way

By on May 20, 2010 in Autism

Parenting is one of those things where you can’t help but share your experiences and insights with other parents, especially if they’re new parents. It’s one of those things where, even when you know you shouldn’t, you still speak up when you see them doing something you don’t agree with. It’s one of those things where, when you take care of their child, you ‘sneak’ in some of your own brand of parenting because you think they’ll be better for it. It’s… well, it’s really quite invasive, isn’t it??

We all do it and we all mean well, it’s always done with the kindest heart, even when you just want to scream at them to just shut up… please just shut up! But you don’t, because you know they’re not wrong, and they’re just trying to help… it’s just that, they don’t know your child as well as you do and their methods, although they may not be wrong, may be a bit dated.

Let’s take grandparents as an example because I think we can all agree that they can be some of the worst in this department. They raised you and you turned out just fine, right?  And they are a great source of wisdom, so it’s only natural they’d have the most to ‘share’ with you.

But sometimes, it can be a bit much for the young parents who just want to do things for themselves, right or wrong… they need to be their own kind of parent, not someone else’s.

Now, this brings me to Autism… let’s face it, even if they had an Autistic child, they didn’t have yours… and they’re all different. But chances are, they didn’t. And they haven’t done all the research you have nor spent the same amount of time with your child as you have and therefore, they keep giving their same old advice and it really doesn’t even come close to applying to your situation now. But they still mean well and you still listen with a smile knowing full well that you can’t do what they did.

What I am trying to say is that it’s up to you to educate, even the most stubborn “I did it and I know what I’m talking about” kind of advice giver… you can’t just smile and nod because they don’t know. They don’t understand. They haven’t been in your shoes.

I’d like to share with you one example where we didn’t educate enough, we didn’t make ourselves clear enough or… we simply never would have been able to but after the deed was done, the lesson was definitely learned.

We took my wife’s mother with us to a pasta restaurant where we knew full well that our choices would be extremely limited since Cameron (my son) is on a strict gluten free diet. We got him some pasta but never intended for him to eat much of it. Just a little… and we’d pad that with other food, even deserts if we had to.

Well, being a good grandmother, she disagreed with filling a child with deserts or ‘other food’… she knew full well that he was on the diet, and knew fell well that we’d object. However, she didn’t know just what the gluten did to him. She didn’t understand the full extent of his condition. As I said, we tried to explain but really, who believes that a little pasta will set off a child like a grown man on heroine?

So, as my wife and I went off in search of food for him (at a buffet), Cameron’s grandmother took it upon herself to feed him some more of his supper before we got back. As I said earlier, she wasn’t really wrong in doing it… it’s what I would expect a grandmother to do. However, as I also said, in the case of Autism… we failed in educating her properly.

We got back to our table and protested what she did, she argued that he’d be fine… damage was done, what can we do.

So we returned home afterwards where the monster quickly revealed itself… and when I say monster, I mean it. He was screaming, going wild, jumping off of furniture… to say he was bouncing off the walls is quite a literal expression. He actually got a big bruise under his chin from hitting a wall… under his chin!!

He finally went to sleep some time after midnight (his bed time is 7pm) and woke up very sluggish, very slow and proceeded to spend the entire day on the couch, in a ball, rocking back and forth apologizing to us, telling us he loves it, saying sorry…  just, so secluded, so alone.

I swear to you, it was like watching a drug addict go from a major high to a very extreme low and it all happened so very fast. Even other family members that were around that day or the day after commented on how bizarre he was acting, how different he was. They were shocked that a few bites of pasta would cause such a huge change in him.

His grandmother felt terrible (I really hope she doesn’t mind me sharing this story) and she realized then and there that despite her good intentions, she really needs to take what we say seriously. That when we say he has extremely bad reactions to gluten, we mean it.

It’s a lesson I wish we could make really clear to those around us without them having to see it first hand… but I have yet to find what works. Parents are proud people and they raised children successfully. Plus, Autism is still very foreign to many people, especially older people. To some people, they just see wild, disobedient children and some even go so far as to dismiss Autism entirely… they figure it’s just the parent’s fault these days.

What ever the case, it’s hard to convince more experienced parents that they really don’t know better than you. But for your sake, for your child’s sake, you have to.  Don’t wait until they learn the lesson the hard way. Sit them down, show them videos, show them information, make them understand.

You have to prepare your child for the world as best you can but you also have to prepare the world for your child.

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Practicing His Thai Chi

By on May 11, 2010 in Diagnosing Autism

From the moment Cameron was able to sit up on his own, he would pick up one toy in each hand and begin to move them from side to side directly in front of his face. And I don’t mean just little movements, he would literally extend his arms as far out as he could, move them from one side across his face over to the other side until his arms were fully extended again and then back again. This motion would be repeated far more times than I could count.

He wasn’t just moving them in front of his face, he was moving them passed his eyes. And he wouldn’t watch them go by, his eyes would stay straight ahead as his toys would pass by.

At first, people would comment and joke and we, not knowing any better, would tell people that he was practising his Thai Chi, because that’s exactly what it looked like. Over the course of a year, however, we began to realize that this was a symptom of something that wasn’t so funny.

Since then, we’ve come to learn that it was the gluten in his food which was acting like a narcotic in his brain, causing his toys to blur and leave trails as they went by. Imagine a one year old, high on drugs, getting spaced out and watching objects go by leaving trails in their wake… that’s how it was for Cameron.

A doctor suggested that even though there was no concrete proof of it, that sometimes a gluten free, casein free diet can really help when dealing with Autism. We had tried several different things and so we tried this diet as well, cutting out his pasta and no more sandwiches. Within 3 days, we saw a radical difference in Cameron, he just seemed so much more aware of his surroundings and cut down on his Thai Chi movements quite a bit.

Do I now recommend the diet to other parents dealing with Autism? Absolutely.  Do I guarantee it’ll help. No, there’s no guarantees.

But our house is mostly Thai Chi free. We still see it if he’s very stressed or overwhelmed, but it’s rare these days. And even though it’s still no joke, the progress makes us happy.

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