About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

Life is the key to decyphering Autism

By on January 26, 2011 in Autism, Autism Communication

A “cipher (or cypher)” is essentially a scrambled up message that requires a “key” to unscramble it. For example, if you used 1-26 instead of a-z to write out a message. You’d take that long list of numbers, change the numbers back to the letters they represent and presto, you’d have a readable message.

The reason I’m explaining this is that there’s a stage in Autism where a person goes from non-verbal to being very cryptic to being a person capable of appropriate conversations. Sometimes this “stage” happens in childhood, sometimes it’s adulthood, sometimes it’s for a year and sometimes it’s for many years.

What happens is that a person with Autism will likely think very differently than most “normal” people but not really realize that there is a difference. Therefore what they imagine is happening, or their ability (or lack there of) to explain it, often ends up in something that sounds like some sort of code and often leaves us parents having to crack it.

The good news is that we have the tools to do it. The bad news is that we’re the only ones with the tools to do it because the key to cracking the cipher is that person’s life.

I’ll give you two examples of what I mean, the first happened just tonight.

Cameron has been having it particularly rough the last couple of weeks, outbursts, crying fits, general bad behavior… so finally, tonight, I sat him down and had a talk with him.

  • Me: Cameron, what is going on? We need to stop and talk… we need to find out why you are doing more bad things than good things.
  • Cameron: …
  • Me: Does your tummy hurt? Does your head hurt? Are you sad because we changed your bedroom? Are you sad because a teacher left your class?
  • Cameron: When I do bad things… when… bad stuff… I have bad things dancing around in my head.
  • Me: You have bad things dancing around in your head? What do you mean? What bad things?
  • Cameron: bad things like… hitting… and pushing… and cutting…
  • Me: Those things dance around in your head?
  • Cameron: ya… and I can’t get them out.
  • Me: Who is doing the hitting and pushing and cutting in your head?
  • Cameron: <names another child at school>… he cuts… the teachers…
  • Me: I see, he does these things in your head?
  • Cameron: Ya… and I can’t get them out.

So at bed time, while putting on his PJ’s, I talk to him about it again.

  • Me: So what do you think we should do about these bad things dancing around in your head?
  • Cameron: We have to cut them out.
  • Me: Well, we can’t just cut things out of your head.
  • Cameron: Ya.. we have to make a hole… and cut them out and put it back again.
  • Me: Sorry buddy, but it doesn’t work that way.
  • Cameron: Why?
  • Me: It’s just not that easy. We can’t cut you and take ideas out of your head. We have to find another way.
  • Me: What do you do with food that you don’t like?
  • Cameron: Throw it in the garbage.
  • Me: So what can you do if it’s bad ideas dancing in your head that you don’t like.
  • Cameron: Throw it in the garbage!!
  • Me: And what is left if you throw the bad ideas in the garbage?
  • Cameron: …. uhmm.. good ideas?
  • Me: Right. Do you think that would work?
  • Cameron: Ya!!!

Do I think that will work? Who knows. On some movie set or episode of Dr. Phil maybe… but it’s a start. At least I have a good idea now that the actions of his lower functioning class mate are starting to wear on him. This gives me, and his teachers something to work with.

And it fits because this is very very similar to the outbursts we had with him when he first started school over a year and a half ago. He didn’t feel safe. Now it’s happening again.

My second example (I didn’t forget) was when his teachers wrote in his journal that he was complaining about a strange noise in his head. Again, close to bed time, I talked to him about it. He described it as a strange noise in his head, that he couldn’t stop and couldn’t get out.

After some world class interrogation skills and deductive reasoning on my part (ya right), I was able to determine that the “noise” was mooing and it was part of a song that he liked but hadn’t heard in a while. A line or two from that song was stuck in his head, playing over and over again. He didn’t know what song and couldn’t make it stop. We’ve all had that happen before!

So again, both examples show that not many people could have figured out what exactly was going on in that marvellously complex mind of his because you need the key to unscramble the messages… and that key is his life.

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Freeing the soul that is locked within

By on January 24, 2011 in Autism, Autism Awareness

Low functioning (severe) individuals with Autism are often referred to as being trapped in their own world or being in a body that simply doesn’t work the way it should. There is a new movie (Wretches & Jabberers) coming out that I think will illustrate this concept beautifully.

Most recently, there was a news article referring to how Autistics really do understand you even if they can not speak and you do not get a response. Honestly, Carly Fleischmann probably is the best example of this to date… a young girl that was unable to speak for most of her life until she approached a computer keyboard and began to type out full, coherent sentences.

There is a lot going on here that I think a lot of different people easily forget. Here is how I see the forgetting being broken down:

  1. Parents of children that have Autism yet are still higher functioning, or even with Aspergers, often forget that other parents have children that hurt themselves, others, have yet to be toilet trained or even speak.
  2. Individuals with Autism/Aspergers see it as a gift as well as a curse, sometimes simply as a gift.. I’ve even seen some go so far as to think they’re superior from everyone else. To these people, many times, they see no reason to do anything at all except welcome the gift for what it is. This can make some parents quite upset when their children are so bad off that they see it as nothing but a curse.
  3. Parents of the low functioning children sometimes forget that their children is likely very aware of what they say and do around them. Often talking to others as if they’re not there, when they are… getting upset at them for something beyond their control, for saying hurtful things out of frustration… they forget that they wouldn’t say these things if their child was listening… they are listening.

There are a couple of key points to all of this that I think are often missed as well, not on purpose and certainly not at all times… but from time to time, we let it slip out of our memories and thoughts.

As difficult as it is to have a special needs child, it is still just as hard or even harder to be that child.

We often get wrapped up in the stress that we forget our child is even a human being.. not literally, but figuratively. We forget their thoughts, emotions and own frustrations are in there… we don’t see it or hear it, but they’re there. They’re in a prison right there beside you and they can’t get out. You think you have it hard that they won’t give you a hug? Imagine how hard it is that they so wish they could… but can’t.

There could be brilliance struggling to get out.

I often say “No matter how severe, never underestimate a person with Autism. There could be brilliance struggling to get out.” I was corrected that I should say “is” as opposed to “could be” but again, we have to be realistic… not every person with Autism is brilliant. They are certainly wonderful, beautiful people with unlimited potential… but not everyone is brilliant, Autism or not.

But in the very least, there is an average person in there… brilliant or not, they’re amazing in their own right. Don’t expect there to be the next Einstein or Mozart in there that you have to release… they’re probably not. But they are still your children.. your perfect children.

And they don’t need the pressure of greatness pressed on them. They simply need to just be. They simply need to have your acceptance, your understanding and most of all, for you to never forget who they are. They’re in there.

This is where I feel there needs to be a cure.

Not necessarily a way to strip away Autism or even prevent it, but for right now, we need a cure to break the shell.. to let these children (and adults too!!) be able to not only speak but express emotions, function properly and become independent.

I don’t care what vaccines might do, or what living close to a highway may cause… all of those studies talk about risk. As in, percentage points. None of those studies mean that you do X and you’ll have a 0% chance of having a child with Autism. And until that does come to be, we need to be focusing on getting those low functioning individuals talking.

Cure the curse, leave the gift.

Comments { 5 }

A little about me, what you didn’t know

By on January 20, 2011 in General

The lovely @savvymum4 from The Trials and Tribulations of the Sav-ettes tagged me in her meme post here.

As such, I am to write 7 things about me that you may not know but I figured I’d open it up to Twitter/Facebook and see if there was anything specific you’d like to know.. so here are some of those questions. Sorry if yours got left out, I am only to use seven.

1. I have a college diploma from the British Columbia Institute of Technology in Radio Broadcasting. I have the voice for it, I have the talent for it but it wasn’t meant to be. Radio, by the way, turned out to be the most fun I’ve ever had a job as well. However, facing down many many years at minimum wage in small towns before even having a shot at getting a big break was not appealing so I abandoned it.

2. The first Christmas break of my 2 year program in college, I devoted my week to learning HTML so that I could learn the basics of making a website. After completing college, and a year at a radio station, I moved back to the city to take up a job as a full time web developer. I guess I really did learn all I needed to know in college because I’m still a web developer to this day.

3. I’ve travelled to most places in Canada between Quebec City, Quebec and Victoria, British Columbia. I’ve also been down to Florida, Pheonix, L.A., Las Vegas, Tijuana and most recently, Singapore and Bangkok Thailand. I would love to do so much more travelling as I really loved being to all of these places but family life has a way of tying you down.
For some pictures of Singapore/Thailand, visit here.

4. I spent the better part of my youth at my grandparent’s hunting and fishing lodge. Being a family business in the remote northern forests, certain laws weren’t always ‘necessary’.. for example, I was serving alcohol (sometimes) when I was 9, I could drive before I was 11, I was the supervisor of the trailer park by the time I was 15 and was awake and working from 10am to 3am almost every day.
My childhood dream was to work with a computer, no more manual labour… now that I am chained to my computer, I kind of miss that old lodge.

5. In grade 4, I took the CAT (Canadian Achievement Test) and scored a 100%. The top 5 students that year had to take an advanced test which I scored a 97.5% on. The top student was forced to go to a private school… it was not me. My friend, at the time, scored higher. However, because I had also scored high, I was given the choice to go as well.
This scared me… I didn’t want to be taken off to some school that would be really strict, really hard, really… scary. And so I declined and my mother respected my decision. From that day forward I was never able to study for a test again.
In fact, in college (the radio program I mentioned in #1), I finally decided that I had to put away my 4th grade self and really buckle down and study for the one big test that made up most of the class’s final grade…
it was the only test that I had ever failed.

duncan6. A typical day in the Duncan household is not really typical, almost every day is different lately, thanks to the additions of a new puppy, a new part time job for my wife and just the random dynamics that a family tends to have but, generally speaking, it goes something like this…
I wake up with my boys, any time between 5am and 7am.. why so wide a range? I don’t know. But my boys average it around around 6, it’s not too bad. I get up with them and feed them breakfast, get Cameron’s lunch cooking and put on their favourite television shows.

Around 7, I wake up my wife who picks out Cameron’s clothes and gathers up the rest of Cameron’s lunch (snacks and drinks)… then either one of us will help Cameron get dressed altho he does a lot of it himself now (he’s 5).

At 8am, I take Cameron out to the road to wait for his bus… when I come back in, my wife usually goes back to bed until 9:30, when I start work. If I didn’t get much sleep or if it’s been a long week, sometimes I’ll go back to sleep instead. The one that doesn’t sleep gets to play games with Tyler (3 year old) for an hour and a half.

At 9:30, I work until 5:30 while my wife plays games, does arts and crafts and other activities with Tyler… he usually naps around 1pm for an hour.

At 3:15, Cameron gets home.. I go out to the bus and bring in Cameron, talking to him about his day. When he gets in, he usually immediately wants to play video games but that’s up to his mom… I go back to work.

At 5:30, we all sit down for family dinner.. no tv, no living room even.. we sit at the table together. Afterwards, either the boys have a bath or we all gather in the living room to play a board game or just play.

Then at 7pm, the boys go to bed. They get a cup of soy chocolate milk, a bed time story and hugs and kisses.

After that, I choose between watching a movie, playing a video game or going back to work. Usually it’s back to work.

Then I go back to bed at 10… although lately it’s been closer to 12, due to work.

7. How my wife and I met…  not nearly as excited as how we “got together”… but here it is.

I’ve known Natalie since I was 14, working back at that family lodge. Her family stayed in the trailer park. They stayed there for quite a long time so I got to know them all quite well. She would often babysit for my uncle and even help out around the lodge any time any of us needed her. They were all good friends of my entire family.

When I turned 18, I moved out to Vancouver to finish school and begin my life.. the lodge was sold and most everyone went their separate ways. I continued to stay in touch with her though via email and instant messenger online.

It wasn’t until 10 years later that I finally convinced her to come go out to Vancouver to visit… you see, she’s a big nature buff, having her career in tourism for Northern Ontario… so when she agreed to finally come and see how beautiful Vancouver is, I told her to fly to Calgary instead.

The reason for this is that the highway between Vancouver and Calgary is considered one of the most beautiful highways in the world, going up and down the Rocky Mountains… at one point you can be quite warm, in the valley and the next minute you’re in clouds with snow on the side of the road.

I had a big breakfast and hit the road. It took me 10.5 hours of solid driving to get from one end of the mountains to the other where I filled up with gas, she got into the passenger seat and I turned around and drove back.

She spent a week in Vancouver where I took her on a horse carriage ride around Stanley Park, up Grouse Mountain, to the Aquarium, to the suspension bridge and so much more. I loved right down town on the beach… so each night was met with sunsets and seafood dinners.

By the way, until then, salmon was her favourite food ever but after a paddle boat dinner cruise around the city with fresh salmon caught that day… she doesn’t want to eat it anymore because it’ll just never compare.

She flew back home, we continued to stay in touch… and a few months later, my grandfather took a turn for the worse with cancer. I went back to Ontario to visit him and ended up staying with Natalie… literally. I never did go back to Vancouver!

I had a friend take care of my cat, I had another friend pack all my belongings and ship them to me! And Natalie and I have been together ever since (7 years ago).

I thought I’d include a few pictures of the drive and the first night sunset.

That’s a lot… but hey, you asked for it, some of it anyway.

Now its my turn to tag, these are some of my favourite people on twitter:

@bigdaddyautism blogs at http://bigdaddyautism.com/

@autismarmymom blogs at http://www.autismarmymom.com/

@ihave7monsters blogs at http://livingwithlogan.com/

@amandabroadfoot blogs at http://www.lifeisaspectrum.com/

@Lost_and_Tired blogs at http://lostandtired.com/

If you have any other questions, info you’d like to know about me, don’t hesitate to ask.. but also don’t expect that I’ll answer everything.

Comments { 9 }

The public vs private school debate. Has everyone forgotten it’s a spectrum?

By on January 18, 2011 in Autism

There has been a lot of talk lately, due to news stories coming out, about the pros and cons of having children with Autism pushed out there into public schools or secluded away into private schools. Quite frankly, I’m surprised this is even a debate.

Here is my question for all involved… how can you possibly debate one or the other when what we need is both?

Autism is a general term encompassing a spectrum of disorders in a variety of levels of severity… you know this, I know this… these people debating should know it.. right?

If you are debating this topic at a political or journalistic level, please listen to me very carefully.

We need both!

Children that are newly diagnosed likely need the extra hand holding… a child that is so severely low functioning that they’re unable to speak or be toilet trained, they should probably not be in a public school. No, I don’t think the parent has to choose between an institution and home schooling either. A school should be an option… an OPTION. They should not be forced into school and they should not be forced to send their defenceless child to what will likely be a very difficult and cruel time at public school.

Conversely, a child that is speaking, rather intelligent and capable of maintaining at least one friendship at a time will likely benefit from being in a public school. Here, their social skills are put to the test as well as their intellect… also, if they’re high functioning, they won’t be subject to the lesser desired behaviours of the lower functioning children around them in an all Autism school.

A spectrum of children with a spectrum of functioning levels requires a spectrum of solutions… not ‘a solution.‘

There is never one solution for all children when Autism is involved.

I understand there is seldom the money available when having to choose which services will get which funding but I’m afraid you don’t get to choose… there really is not a choice. Parents need both because our children need both.

This is where we need to step it up to another level beyond Autism Awareness and institute a policy of Autism Understanding and Acceptance.

Comments { 3 }

What you say and what they hear may not be the same thing

By on January 15, 2011 in Autism Communication

I’ve noticed for quite some time how my children often repeat what they hear in a movie or television show but what they say isn’t an exactly copy.

For example, in the Cars movie, one character says “What? did I forget to wipe my mud flaps?” to which Cameron immediately parrots “I think I wipe my butt wraps”.

Another instance is in a Mario Brothers game where Mario cries “help’a me!” and Cameron laughs and says “trampoline!”

There are many many examples I could give. This has been a common thing for him all of his speaking life but I never saw much point in blogging about until a mom on Twitter (@Calormom) commented that her son never answered the question “How was school today?”

Unfortunately, I don’t talk to very many parents that get an answer to the school question. Not very many children with Autism ever answer it.

This mom said that she had asked a teacher from the school and the teacher said that it’s likely that her son doesn’t understand her, or the question or just doesn’t want to answer.

This got her thinking and rather sad that her son doesn’t understand her. Understandable… I felt the same when Cameron would never tell me about his day too.

Miscommunication

Did he say what he heard?

Keeping in mind his strange inability to say what he had just heard from the television, I got to wondering what he might be hearing when I am talking to him. If I talk at regular speed about mud flaps… is he hearing “butt wraps” ??

Here is what I did when I realized that he wasn’t properly interpreting what it was that I was saying.

  1. Consciously slow down your talking.
    In the day and age of instant messaging, texting and so forth, we have even begun to talk faster without realizing it. Many of us really aren’t that good at it either. We slur things together, we abbreviate words we shouldn’t and we mumble stuff out more often than we realize.
  2. This brings me to speaking more clearly.
    I’ve had a few family members tell me how “funny” or “strange” I sound sometimes… which is sad because I’m sounding the way that an English speaking person is supposed to sound. However, our language has become so perverted these days, in the words we use and the way we say them, that people look at you strange for speaking properly and clearly.
    So be it, let them laugh… your child will understand you better… that is what is important.
  3. Try rephrasing the question.
    Children only have a limited vocabulary as it is, so don’t expect them to understand every word you say… and certainly combinations of words might throw them off as well even if they know what the words mean individually. If you ask what they did in class, but they only know of the place they go to as school… they might not have an answer for you.
  4. Talking about school, use words/phrases that the school uses.
    My son’s class has story time, but they don’t call it story time. They call it circle time. If I ask him what they did for story time, he will have no idea what I’m talking about. If he’s feeling confident, he may tell me that he didn’t have story time… even though he did have circle time.. but most likely, especially having Autism, that confidence will not be there and he’ll just have no answer for me at all.
  5. Emotions are an easier memory to recall than facts.
    My son has come a long way so now he can recall facts much better than when we first started but consider this… he can tell me every detail about what happened in a story or movie at school, but can’t tell me what the title was or who was in it.
    The reason he can do that is that he’s mostly recalling his emotions… how exciting the story was, how sad it was, how happy he felt… and those emotions have trapped the story within them.
    When Cameron first began talking, I would ask what story his teacher read, or what movie he saw and be met with a blank look..  he didn’t feel comfortable telling me that he didn’t know. However, if I asked if they had a good story for circle time, he’d answer yes or no. From there, I could prod for more information because I had him talking.
  6. Like all things, start slow.
    “How was your day?” is far too broad and confusing. Start with something like “did you do numbers today?” or “did you eat your lunch?”
    Yes or No questions are a great place to start and as I said, use words/phrases the child already knows. The less confused they are, the more likely they’ll talk. In time they’ll become accustomed to the questions and the type of information that you’re looking for. That’s when your child will start to catch on that “how was your day?” is just another way of asking all of those questions at once… but they have to work their way up to that point.

Don’t be discouraged if your child doesn’t understand you… they haven’t understood you for their entire lives, but they’re learning. This is no different. Also, it happens with all children, just maybe not to the same extent as a child with Autism.

You just have to keep all of these things in your mind, remember not to get frustrated when you don’t get an answer and to understand what may be going through your child’s mind.

Your child loves you and does want to tell you… they just need a little help from you.

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