Tag Archives | Autism

Do Unto Others – Or in other words, if it would hurt you, it would hurt them

By on October 12, 2010 in Autism

This week-end was a big family week-end, there was a lot going on at all times. To cut right to the chase, my boys were playing with their cousin and while wrestling, Cameron jumped and landed with his butt on his poor cousin’s head… while she was laying down on the floor.

My son is not small. He’s only 5 but he’s about the size of an 8 year old. His cousin is 12.

Suffice to say, it hurt her quite a bit and the playing promptly came to an end.

The boys came to find me and told me that she was crying but didn’t tell me why. We had to track her down and find out what happened.

I don’t think anyone ever questioned it but I could just tell that if anyone else had put much thought into it, it would appear that Cameron had no remorse about it at all, he just went off and played with something else.

But I could tell, because he was in the opposite end of the house on a different floor, playing by himself. You wouldn’t know it just to look at him, but he felt bad about it.

A little while later, when I was alone with him, I tried to talk to him about it. The only way I could think of to get it through to him, which is what I’ve always done with him, is to ask him how he’d feel if it was someone jumping on his head.

It seems that, for the most part, he does not understand nor realize in the slightest just how much his actions will hurt someone else, but he does know what would hurt him.

And so the only way I can make him understand how to be careful or avoid certain things is to think first about how it would feel if it was done to him. Naturally, when playing, there simply is no way for him to stop and think about it like that. He just does what he thinks is fun.

I mean, this is a tricky enough topic for any child to learn but when you have Autism in the mix, there’s just no way for a child to understand how their actions will affect the person they’re doing it too. Especially when it comes to another person’s 5 senses, such as touch. Pain is just too foreign a concept to know how others would experience it.

But like everything, this is a learning experience and he felt really bad about it. So even though he likely doesn’t quite get the whole concept of what happened, he does know what he did wrong.

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Understanding Autism: Autism Life Histories

By on October 8, 2010 in Research

Yesterday I received an email asking that I help spread the word about a study on Autism. Not just Autism itself but on life histories of those involved with Autism. This is the email:

Dear Stuart Duncan,

We are researchers at Columbia University's Institute for Social and
Economic Research and Policy studying autism. We are currently
collecting life stories from parents about their experiences in
recognizing their child's autism, seeking professional help and
navigating the available service systems. We think participation in
this study would be of great interest to your readers, and we would
like to invite you to write about our survey on your blog.

The goal of this project is to gain a better understanding of the road
to diagnosis. Parents have different experiences and observations of
their child's development and they have different personal resources
with which they access care and services. Parents also differ in the
type and extent of their support networks and social relations. And
finally parents make different decisions in their quest for obtaining
the right diagnosis and care for their child. We would like to give
parents the chance to tell their stories. Participation in the survey
may help us understand the heterogeneity of autism as well as how
children develop over time.

We are collecting life stories of parents of children who have autism
through an online semi-structured survey at our website,
http://www.understandingautism.columbia.edu. You could help our
research tremendously by encouraging parents to participate in our
study. 

We thank you in advance for taking the time to read through this
invitation and considering writing about our survey on your blog.
Please feel free to contact me via e-mail at
understandingautism@columbia.edu or telephone at 212-854-3440 with
any questions that you may have.

Sincerely,

Peter Bearman, Principal Investigator
Cole Professor of the Social Sciences
http://www.understandingautism.columbia.edu



Please give them a visit and get involved if so inclined. Information gathering is so important and sharing our stories is what helps others live out their own stories.

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The boy who couldn’t say “good-bye”

By on October 7, 2010 in Autism

People tend to have a lot of questions about “feelings” when the topic of Autism comes up, the most obvious topics covered are the temper tantrums, the lack of eye contact and the refusal to hug or show love.

The questions range from the simple “why” to the more absurd “do they even feel love?”

Cameron is a very special boy who’s overcoming the odds, going from mild-severe Autism to… well, many people question if he was ever Autistic in the first place. However, he still is extremely reluctant to hug anyone, kisses are even more rare, temper tantrums still get the best of him…  in short, he still has Autism. But he’s doing so well.

One thing that has remained constant and I suspect always will for the rest of his days, is that he absolutely refuses to say “good-bye” to someone when it’s someone he loves and someone he knows he won’t see again for a while.

If he knows he might see you in a day or two, or if you’re just some random person, he might say it… more than likely you’ll get a “thank you” or a quick “bye!” to get him out of there.

But if you’re someone he knows, someone he cares about… there’s a very good chance that he won’t even want to be in the same room with you. And it’s not because he’s mad, or sad, or scared. And it’s not because he doesn’t feel it.

It’s because it hurts too much. It’s because he feels it all too well, on a scale you and I will likely never even imagine. He doesn’t say “good-bye” because he can’t say “good-bye”.

I have yet to hear him say it to someone and mean it… to someone he cares about. I doubt I ever will.

Do they feel love even thought they don’t hug you, or kiss you, or look you in the eye? In my opinion, if you were to put the amount of love Cameron feels into a scale and the amount of love you feel into a scale… an observer would be more inclined to ask you that question instead of him.

And you know what? Those that know Cameron, they get it. And they know they’ll never hear him say “good-bye” and they are just fine with it.

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Hooray for the Tooth Fairy!

By on October 1, 2010 in Autism

Cameron lost his first 2 teeth in the month of September… that’s 5 years and 2 months old for those of you keeping score. Both were the front bottom two teeth.

Now, the reason I’m writing about this is not that it’s been an issue, it’s that it’s been an unissue! Yes, I just made that word up.

You see, as parent of a child with Autism, it’s just such a wonderful feeling when everything just goes so.. normal! His teeth fall out when you’d expect them too, he’s excited about leaving them for the tooth fairy, like you’d expect him too, he loves getting money that he can spend on anything he wants, like you’d expect him too… it’s just… it’s normal and it’s wonderful!

Pulling his "CHEESE!" look with 2 less teeth

That’s not to say that his life is so bizarre or out of the ordinary that this is a completely unique feeling, but it’s still wonderful all the same. A lost tooth was definitely something that we thought could have lead to quite the meltdown or possibly some anxiety anyway. Sometimes you just crave those moments where you’re not thinking about the screaming fits, the therapy sessions, the talks with the teacher…. and so on. It’s just another day in the life of a child, as it should be.

And so here we have this toothless wonder, super happy that he’s getting to be a big boy, super excited that the tooth fairy comes just for him and gives him something super special that is just his own.

It’s pretty fun for the parents, any parents… but when most things are either delayed or don’t go as you might expect, it’s just that much more fun for me and that much more wonderful.

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Autism is not an excuse for failure, it’s a reason to try harder to succeed

By on September 30, 2010 in Autism

This is something I tell people all the time and my wife summed it up rather well the other day: “Autism is not an excuse for failure, it’s a reason to try harder to succeed!”

Too often I hear about people not going out because they don’t want to deal with the meltdowns or judging glances, or I hear about them just never trying to feed their child anything but what they will eat without a fight, or even worse… they let them get away with being rude or even bad behaviour because it’s easier than dealing with the backlash from discipline.

This child is still YOUR child! Your child is still YOUR responsibility. And no matter how violent, non-verbal or even how incredibly smart they may be… you are the parent and should be parenting your child. No it’s not easy sometimes, especially with Autism in the picture but no one said it would be.

I’ve written before about a comfortable rut, where you just continue along with what is easiest but in this case, I mean more than that.

I cringe every time I hear “sorry, he’s Autistic” come out of the mouth of a parent as an excuse as to why their child does something wrong or rude. It’s fine to explain that they’re Autistic and may be attributing to their behaviour, especially if it’s due to sensory overload or something of that nature, but it’s still not an excuse.

Practice makes perfect

The simple fact of the matter is, if you never take your child out because you don’t think neither of you can handle it, then your child will never go out… ever. How can you expect your child to develop coping mechanisms, or to learn how to process all that information or learn how to deal with it within themselves… if they’re never exposed to it?? They can’t. They won’t.

Avoiding the problem does not solve the problem.

So your child hits others, maybe a sibling… do you just accept it? Put oven mits on them so it doesn’t hurt as much? Or do you sit at your computer as long as it takes to find some possible solutions? Do you pound the pavement looking for doctors/therapists that have possible solutions of their own? Do you work with your child to find other outlets? Do you take them aside every single they do it, or just once in a while?

Being tired is not a reason for giving up.

Autism is not easy, even for the most gifted savants, they have issues that you and I couldn’t dream of… and life is not easy. But that’s not an excuse for failure. That’s not a reason for an apology in place of dedicated determination.

You have to try harder. Your child has to try harder.

I give my son no exemptions. He needs to be told every single bath time not to put the water in his mouth, so I tell him every single time. And every single time he gets disciplined. One day, he’ll stop.

He is not allowed to hit, no matter what his sensory processing disorders may be telling him. It’s simply not acceptable and no matter what his mind is telling him, I won’t allow it. It makes things hard and probably interferes with what his mind is telling him but that’s just a reason to try harder at finding a way to stop it.

There are always exceptions to every rule, there are times when circumstances mean removing your child from a situation instead of disciplining… also it’s important to note that when I say ‘disciplining’, I mean anything ranging from time outs to simply talking to them about it.

You don’t have to be the bad guy (mean parent) all the time, you just have to realize that you can’t allow yourself to be a pushover and let your child get away with things they normally wouldn’t… just because they’re Autistic.

No matter how severe or high functioning your child is, there’s no easy ways out. You have to go into the public and face the meltdowns so that you can both learn how to handle and even avoid them better in the future. You have to stop them from hitting, whether it means constant talks, time outs or doing more research than you ever thought possible.

You have to do more, your child has to do more. No one ever got further in life by giving up. Autism is not an excuse, it’s a hurdle. A much bigger hurdle for some than others but a hurdle just the same. The bigger the hurdle, the harder you have to try to succeed…. it’s not fair, but the alternative is to accept failure, for now, for always.

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