How Old is Autism? Is It a New Thing or Has it Been Around a Long Time?

By on June 10, 2010 in Autism

I’ve seen this question asked a lot around the internet, and have been asked by a lot of people “Why is there so many people getting Autism these days?”

Keep in mind, I’m in no way telling you that this is how it is, it’s just my take on what I know based on what I’ve read and come to my own conclusions…

A lot of people blame vaccines, if not for actually causing Autism in their child, then for at least triggering it or being the final straw that allows it to manifest and steal their child away from them. The reason I bring this up is that it, in my mind, distorts their perception of the origins of Autism. Naturally, no one knows what causes it exactly or how long it’s been around, but I’d venture a guess to say that it’s been around a lot longer than our vaccinations.

For example, just yesterday I was discussing with someone how, when we were children, we had a lot less vaccinations than kids do today. Which is true, but then I think to people like Temple Grandin who is now 60, which is near twice as old as I am and how little she must have had to endure in the way of vaccinations. Also, I know some people that are Autistic and never once been vaccinated. And Autism happens in countries where vaccination isn’t even available! So, perhaps it’s a reason for the spike in occurrences but certainly not the cause. So it’s safe to assume that Autism was around before vaccines became a big money grab for pharmaceutical companies.

My grandmother, who is 75, asked me why there seems to be so much Autism these days, to which my reply was… are you sure there’s more now? It was in that instant, as she asked me, that I started to really contemplate it. My first question back to her was “when you were in school, was there a ‘special education’ class where the ‘slower’ kids were put?” and she said yes, there in fact was. I think most of us can remember such a class or classes in our school.. some had a trailer which separated them from the building. She said that those children didn’t talk, or would scream a lot, or needed a lot of extra help in learning things. Hmm… that sounds familiar.

The whole notion of Autism wasn’t even around until 1910, and even then it was used to describe schizophrenia, until 1938 when Dr Asperger used it to describe a much more specific disorder, the one we know today. That seems far enough back but in fact, even then it was still considered just to be an anti-social thing that children had due to “refrigerator moms” not loving them enough.

In the meantime, people have said that Isaac Newton, Albert Einstein, Mozart, Van Gogh and more quite likely had some form of Autism… it’s impossible to be certain obviously, but if true, then Autism could date back hundreds of years.

Now, we come back to present day and ask, why is there more now? Well, I’m no scientist so I can’t tell you for sure that there is or isn’t more cases today just that, in my opinion, I think it’s mostly a matter of people becoming more aware. I know people right now who’s children are obviously Autistic, but they’ve never been diagnosed. The parents either are clueless, simply not aware of Autism at all or are in denial. I read all the time of children being diagnosed at 2, 5, 9… even 15 years of age.

Remember, the doctors give the official diagnosis that gets counted but it’s the parents that have to make the initial diagnosis. They’re the ones that have to recognize, accept and seek out the diagnosis from a specialist before their child is counted.

Going back 5, 10, 20 years ago, there were very very few doctors that could make that diagnosis, much less parents that could recognize it. I mean, it wasn’t that long ago that moms were told they were crappy parents and therefore the cause of it. Why would they go to a doctor to hear that?

Do I think that there are more cases now than 100 years ago? Sure, it sure seems like it. Do I think that there’s some force causing a huge fluctuation in the numbers? Not so much, and I’m probably mostly alone in this thinking but I think given it’s long history, given how parents are becoming more aware and seeking diagnosis more now than ever before, given that there are more doctors and facilities to make a diagnosis… the numbers will just naturally go up all on their own even if the actual number of Autistic children don’t.

The question is, if we could have every single Autistic person counted now, and count every single one 5 years from now, taking out all the variables such as parents who don’t know, the ones that have no way to get a diagnosis, the ones that are simply getting a diagnosis later in life…  would the numbers be that much different? And if so, how different?

I would love to hear what you think… did you have a special ed class where “slow” children were placed even though they were never “diagnosed” with anything? Do you believe that Autism is a new thing that’s just coming on due to vaccines or pollution in the air?

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Lesson Learned: Always Have a Parent Present

By on June 9, 2010 in Autism

Shortly after getting Cameron diagnosed, we quickly found ourselves in a world of waiting as programs and services were all under funded and over filled. Because speech was our biggest priority, we bit the bullet and forked out the $150/hour it took to get our son in for speech therapy right away… the condition was that my wife, his mother, was able to sit in for each session to not only be a part of it but to learn what methods to continue reinforcing once our son was home.

After a little while and some good progress, the free speech therapy program was available to us which, at the time, was very welcoming since we really were in no position to afford $150/hour. So we quickly shifted him into the new program where we quickly realized that not all therapists are created equal.

This lady would give Cameron a toy and a task to perform with it, if Cameron wouldn’t or couldn’t do it, she would take his hand and force him to do it. Now, I would have thought that lesson #1 with Autistic children would be to know better than to even make contact, much less hold them and position them in such a way. This sort of manipulation did not sit well with Cameron and he got quite upset.

Then, once the task was performed, she demanded that Cameron put the toy away immediately after. He had just started to use this new wonderful toy and was now being told, and then forced to put it back.

This kind of hand holding and give and take process with the toys was very counter productive and would ultimately set him back several weeks. Rather than learning how to speak, he was learning how to regress… to shy away back into his shell further.

Luckily my wife is very hands on, she stays home with him full time and was able to be there to witness this. After discussing it together, we felt that we had no choice but to speak up and insist that my wife be in the room during these therapy sessions… and that most of all, that some things are made clear, and changed.

I’m sure you can tell by my tone that we expected a struggle in getting this to happen but no, they were very receptive and even though they suggested that she not be in the room, they allowed it, and they changed how they approached our son.

We saw immediate results and Cameron did very well, so long as she never grabbed him by the hand and she gave him ample time to explore and discover the toys he was given.

The lesson we learned was that you can not just hand over your child to anyone, no matter how well trained, how well paid or how highly recommended they may be… ultimately no one knows your own child as well as you do and what they think will work for most children might not work for yours.

Since then, we’ve been to several other programs and are even getting started with some programs now and the first thing we tell them is that we insist that his mother be there during the sessions. If they truly want what is best for our son, then they won’t deny us.

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To Infinity… And Beyond!

By on June 8, 2010 in Autism

Toy Story is a pretty great movie in that, no matter what your child is like, they’re probably going to relate to either Woody (the funny, very nice, kinda quiet good guy) or with Buzz Lightyear (the loud, arrogant, strong, proud, no nonsense good guy). It’s almost a window into your child’s inner core as you watch them pretend to be one or the other.. you can see which they would like to be.

I’ve only recently introduced Cameron to these movies, since part 3 is coming out this month (there was always newer better movies coming out so I just never got around to them) and he loved them, as I knew he would… but what I didn’t know was who he’d pick to want to be.

Cameron, being very skinny, very tall and funny and quiet…. picked Buzz Lightyear! And for his friend Woody, he picked his little brother Tyler, the shorter, stockier, louder one. To look at them and to even know them, they were mismatched. Chances are, no one would expect Cameron to pick Buzz Lightyear.

What it boils down to is his simple wish to be able to fly and shoot laser beams. Not overly enlightening or heart felt as I would like to be conveying to you in an effort to get more readers but there you have it. After that first day of watching the movie, he was not overly eager to go to school because he wanted to watch it again but when I told him his rocket ship was coming, instead of his bus, he climbed right on.

A little while later I talked to him about it and asked him if he knew what infinity meant. Of course, he said no and so I described it as “as far as far can go… if you went to outer space and kept going, it would be the furthest you could go”. At which point, he got all excited and said that he could go that far and proceeded to run around the house.

It likely didn’t mean much to him beyond just being silly but to me it kind of meant something more… that he really could go “as far as far can go” if he wanted to. That if he really wanted to, he could fly. That if wanted to he could…. oh jeeze, I hope he never gets a laser beam.

Anyway, the end result is that watching him want to go as far as far can go and then go further… helped me to feel pretty good about his choice to want to be Buzz Lightyear.

Maybe it’s just me wanting to find the tear drop symbolism and all that mushy good stuff. I’m quite happy with him shooting for the stars rather than wanting to be a rootin tootin cowboy now that I look at it the way I do.

To Infinity and beyond!

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Autism, It’s What My Son Has. Not The Other Way Around.

By on June 7, 2010 in Autism

There’s a lot of controversy around this video that was put out in which Autism was made out to be a man, a predator, who was preying on our children… kinda creepy but for me, it really made me think about how those so disconnected with Autism must think. I know for many, it’s how they think of cancer, or other stranger issues like flesh eating disease. These are things that attack people, they move in, attack, grow and take over. I think for some people, it’s just easier to think of Autism in that way.

The truth is though, there is no growth, there is no outside entity moving in. It’s something you just have, it’s a part of you. For all it’s good (savants) and bads (violence, lack of communication), it’s just part of what makes you who you are.

I recently ‘tweeted’ a simple line that came to me after watching that video: “Autism, it’s what my son has. Not the other way around.”

And I couldn’t help but think to myself, why don’t I make more of an effort to convey that to people when I’m describing to them how my son is. He’s every bit the normal little boy that every other child they deal with is. He just has some foods he can’t eat, like other children with allergies would, he has some issues with being overwhelmed or over stimulated, I had the same problem as a child, I’m not Autistic.

Autism is something that forces me to have to give people certain ‘tips’ and things to look for when they get to know him. They don’t have to put on a breathing apparatus or wear rubber gloves for fear of catching it, and they don’t have to completely alter entire systems or routines to suit him. They just need to be aware of a few things and all will be fine.

Some parents are not so lucky, I know this… and truly, my heart goes out to you because I can’t begin to imagine what that would be like. But for those of us who can get our child to talk, to be a part of the things we do… remember, they have Autism, they have issues, the Autism doesn’t have them.

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The Hardest Part of Autism – Looking To The Future

By on June 4, 2010 in Autism

I’ve had some people ask me what the hardest part is of having an Autistic son is and I kind of want to smack them. Don’t get me wrong, it’s a fair question but really, it’s an extremely overwhelming question.

Let’s see, we’ll start with the basics like his refusal to eat most foods, he’s never touched meat of any kind and then add on the fact that the stuff he will eat, he can’t because it makes him out of control. Then there’s his constant temper tantrums, more so a year ago than now but still happen. There’s his constant sadness as he comes home from school telling us how he has no friends. There’s the fear we have any time anyone anywhere ever has to take care of him, whether it’s family, baby sitters, teachers, sunday school teachers… anyone. Please don’t enrage him, please don’t feed him! There’s the stress that goes into every outing… right now we need to go on a week long trip, we have no idea how we’ll feed him since hotel rooms and restaurants aren’t his best situations to be in. Then there’s the financial burden, not only is there $150/hr speech therapy sessions but simple things like gluten free food cost a lot more than normal groceries. Let’s not forget that we picked up and sold our house, at a loss, to get him to a city where there’s a school that is perfect for him. That’s a good start….

On top of all of this there’s one thing that is actually harder than all of that, one thing that my wife and I have sat down and discussed many times and laid awake at night thinking about…. Cameron’s future.

I think most parents think about their children’s future quite a bit, most dream of great things and have their worries. It’s safe to say that most parents simply wish for their children to have a better life than they did themselves.

However, when your child is Autistic, you have a whole other world of uncertainty added on… one where the dreams fade a little, one where the hopes of a better life become more a matter of hope than desire. When your child is Autistic, all you want for them, is to be normal.

I think some parents pray for a savant, a child who’ll find that one truly amazing and indescribable talent that will bring the media running and make your child a prodigy… but I think most parents, like us, only want for our child to be able to grow up happy, to be able to finish school, have friends, get a good job, have a family of their own and all those good things that many people simply take for granted.

I think, for me anyhow, the hardest part is looking to the future and thinking to myself, what if he doesn’t have that? What if his life only gets harder? I mean, having no friends is hard at the age of 4 but it can make a teenager suicidal. What if he never has a family of his own? No one to love, to care for him other than his parents?

We can sell our house at a loss, we can handle the craziness when someone slips him a cookie that he shouldn’t have, we can handle the tantrums and the sadness… we can even handle having to eat mr noodles for a while to make sure he gets the things he needs… but looking to the future is something I can’t really handle. It’s something I don’t like to think about.

I’ve learned that all I can do is put it out of my mind and focus on right now. I just have to keep eating those mr noodles, keep helping him through the tantrums, keep getting him into the schools and programs he needs and maybe, just maybe…. hopefully… the future will sort itself out. Because if I spend all my time dwelling on what’s hardest, I’ll miss what is the best…. and that’s here and now.

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