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

Autism advocacy of the future – our children

By on April 6, 2013 in Autism

megaphone-300pxAutism has been around a very long time. It’s definition? Not so much. But even in the last 60 years or so, awareness has and even the definition of autism itself has changed quite dramatically over time.

It started with one doctor, then a couple of doctors and eventually a medical community that would dare to write about it and so on until today, we have parents and even autistics themselves emerging as, not really the dominant voice but certainly a loud and powerful one. At least, it’s getting there anyway.

It’s encouraging but I know that there is still a long road ahead. With constant battles between whether or not the “low functioning” or “high functioning” groups should get the more prominent voices, whether those that want a cure or those who want acceptance should be heard the loudest or most often… progress will surely still be made but there is no solution to the fights or even societal acceptance/understanding any time soon. There is obviously still a lot of work to do.

I have two children. One with autism and one without. I do not know if they’ll continue to advocate for autism in the future but if they do, I’d like to think that no matter which approach they take, that they’d be listened to.

One as a self advocate, one as a sibling, one as an autistic parent maybe and one, possibly as an autism parent. It’s in their genes, this I know. So the future is ripe with possibilities of any scenario.

I’d like to think that, if my advocacy has meant anything at all today, that one day in the future, no matter what their role, no matter which end of the spectrum or what their goals may be, that no one ever try to silence them.

If they’ve learned anything from me at all, then they will know that their own hard work, their own message, their own passion… that is what will drive them in the future. That is what will make them heard. That is what will move people to listen.

And most of all, no matter what, no matter who and no matter how much they try… never ever, not ever, let anyone tell you stop.

Both of my boys have a lot to offer and they still have a lot of growing to do. Should they decide to, should I do my job effectively, I can only hope that they would advocate together, as a team… an unstoppable force, instead of against each other.

Because that’s the kind of advocacy I want for my children, for all of our children and for the future.

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Autism Awareness of a different kind

By on April 5, 2013 in Autism
Cameron and Tyler - Brothers

Cameron and Tyler – Brothers

I would like to take a moment to tell you about my son. Not so much for you to get to know him but to simply be aware of how hard it can really be sometimes.

My boys started indoor soccer this year. While my son stood there, shoulders up beside his ears and tears in his eyes, he’d repeatedly run to the bench where I sat for a big hug. He wasn’t afraid exactly, but he felt extremely uncomfortable. Meanwhile his brother ran up and down the gym, worked with his team and even got himself a goal!

At a friend’s birthday, my son refused to go and play with the others. It was laser tag, in the dark with a few bright lights and lasers and lots of loud children running around. It was all too much. For his senses and his fears. He chose to sit it out. While the children all laughed and talked over presents and cake, my son insisted on sitting with me at the end of the table where he didn’t interact with anyone else except to nod his head when asked if he wants cake.

When I drop my boys off at school each morning, my son stands there, begging to stay home. Begging to stay with me. Begging to “no school”, as he phrases it. As other children say hi and ask him to play, he ignores them. Not so much as a head shake or a shrug. He cries, his gaze focused on me. As I go back to my car, he ventures out of the school yard, to the edge of the road… this morning, he inched his way onto the road until I finally went back to him to insist that he needs to be there, that he needs to finish this one last day before we can spend the whole week-end together. It fell on deaf ears. As I leave once again, he trudges towards the school, head down, crying his eyes out and ignoring his classmates as they ask him if he’s ok or if he wants to play.
Meanwhile his brother barely sticks around long to get his backpack over his shoulder, running off as quickly as he can to soak up every available minute to play before the bell rings and summons them inside.

The son I’m talking about? His name is Tyler and he does not have autism.

His brother, the one that plays great soccer and is eager to laugh and play with friends is his brother Cameron, who does have autism.

Autism isn’t always as obvious as you might think.

Aware?

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Autism Awareness Day – A few things to consider

By on April 2, 2013 in Autism

World Autism Awareness DayAs you are likely already aware, April 2nd is World Autism Awareness Day, or, WAAD for short.

To be aware of something is to “have knowledge of”, according to the dictionary. I think a more accurate description would be “to be conscious of the existence of”, especially when it comes to autism.

The reason I say that is because just about every parent I’ve ever talked to, and I even have to include myself in this, was aware of autism, in that they knew it existed, but really didn’t know anything about autism at all until they had to. That is to say, they had seen the commercials and were told that children were hurting themselves or unable to go to school… but they really didn’t know how autism affected people. They didn’t know the signs to be able to recognize it in their own child.

They were aware. It didn’t help.

So to shed a new perspective on this, I thought I’d lay out some observations, some concerns and even some suggestions in moving forward with this “autism awareness” thing.

Facts and Figures

Autism statistics usually come in the form of ratios, such as how many kids out of how many kids will be diagnosed with autism. But they don’t stop there.  There is complimentary information that goes along with that such as the likelihood of having autism if your family has a history of it, of having a second child with autism, the added probability if the baby is a boy, the chances of autism going up if the mother or father is of a certain age, proximity to a highway, birth information such as c-sections, premature birth, underweight babies, jaundiced babies and the list goes on and on and on.

There was even one study that suggested that countries that get more rainfall are going to have higher autism rates.

Many people dedicate their social network activity on Autism Awareness Day to sharing these tidbits of information in an effort to do their part in raising awareness. Copying and pasting every piece of information from every autism fact website that they can find so that anyone that views their activity that day will become increasingly aware of autism.

This method really only has 2 possible results.

1. You reduce every single person, mostly people with autism but even those without, into a number. You strip away all humanity from these people and leave, in their place, a number on a research paper. People stop thinking about people out there struggling, coping, doing well or not and they start thinking, I hope my child doesn’t become the 1 in the 88.

2. You scare everyone half to death. There is absolutely no reason what so ever to be sharing all of this information except to scare people. And for some people, that’s exactly the point because they’re looking for donations or people to buy their shirts and bumper stickers. Others are so afraid of autism themselves that they are looking to rally more people to their fight. Either way, scaring new parents or potential new parents is not cool. Which leads me to…

Awareness takes two paths

Ever since the day I discovered autism myself, I’ve firmly held the belief that awareness is simply not enough. In fact, I even got the Facebook url, http://www.facebook.com/AwarenessIsNotEnough

The reason for this is that awareness needs to be accompanied with educational material to be effective. And I’m not talking about just numbers, as in the last point about facts and figures. I am talking about thorough, well rounded and well articulated information. This is what leads to understanding. Which is extremely important.

Awareness is quite literally the first step towards understanding and acceptance. You can’t possibly begin to understand something that you are not yet even aware of and you certainly can’t accept it. So awareness needs to happen. There is no denying that.

However, left alone, it takes an altogether different path.

Awareness, all by itself, especially in the case of something such as autism, will lead to fear.

Consider this, if you are not aware of something, you can’t possibly fear it. But if you do become aware of something’s existence, but do not know anything about it, the natural reaction is fear. You can watch any sci-fi movie or talk to any psychologist to see that. It’s called “fear of the unknown”. It’s really quite powerful.

And any autism parent can tell you, most people, like all except a few, were aware of autism but didn’t know anything about it at all until it came time for their own child to be diagnosed. And in between the time when they became aware of autism and the time that they began to research it, they feared it. They wished and prayed and begged that autism would never enter their lives.

Because they read the tweets, they saw the nicely crafted images and they were all too aware of the scary facts. But it was still something they knew absolutely nothing about.

The Choice: Acceptance or Fear?

After a child is diagnosed, most parents feel a sense of guilt, or remorse or even anger as they are forced to come to terms with this thing they’ve been aware of but hoped would never happen to their own child.

At some point though, for all parents, eventually they’ll come to a point in their lives where they’ll be forced to make a decision. It’s not a conscious decision, it happens entirely without them realizing it sometimes, but ultimately, they’re going to find that they’ll have to decide between putting the fears and doubts and grief and anger behind them and accepting their child for who they are or not accepting any of it and embracing the fear.

What I mean by “embracing the fear” is that some parents fight against the autism and thus fight against their own child, pushing them to not be themselves, to not be autistic at all and take that fight outward as they try to find someone or something to blame and forcibly share more and more information that they find in an attempt to perpetuate the fear onto others so that they can fear autism as well.

The Consequences

Awareness is mandatory. It has to happen and it’s been happening for a good long time. But it must coincide with good information.

I use this example when I talk about awareness:

Imagine your very first day of camping. You’re in a tent and it’s very dark out. You hear a noise just outside your tent, going through your stuff.
You’ve heard about just how many dangerous animals there are. You’ve been told about how often campers encounter those dangerous animals.
You immediately become aware. You know something is there. But you don’t know what.
The fear of the unknown grips you as you are all to aware that it could be one of a million things in the forest.
The feeling takes over and you decide it’s best to just pull the sleeping bag over your head and hide rather than look out to see what it is.
That’s awareness without information.

Now imagine you begin to hear little feet scurrying. And then you hear a noise that you know is the sound that a chipmunk makes.
You recognize the signs and your tension releases as you realize that you left the lid off of your jar of peanuts.
That’s awareness with information.

This is how life is for many people when all they know of autism is what they see in bullet point lists from the media or awareness day campaigns.

When a new parent reads “more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined“, they’re not only scared because that must be one really huge number but also because you’re just associated autism with stuff that would kill them. Even if a person tries really hard not to, they can’t help but look at that sentence and think “oh no, I hope my child doesn’t have that, that, that or that!” and suddenly, in their mind, autism has become a terminal disease.

And that is beyond scary.

Autism awareness is not a copy and pasted bullet point list. It’s stories, it’s faces, it’s names and it’s real human lives. It’s tales that are told of how things used to be and how you wish they could be now and hope they can be tomorrow.

Autism awareness is about a community working together and supporting each other to relieve the tension and to ease the fears, not add to them.

No, no one is asking you to try to paint such a wonderful picture that people start wishing their next child could be lucky enough to have autism but I am asking that you try to not paint a picture that has people fearing autism more than aids and cancer combined.

I’m asking that you stop and take a moment and question to yourself, before you say or share something, what is it’s purpose? Will it inform a person or scare them? Will it help them when they have a child or will it make them not want to have a child at all? Will it make them want to hide or will it make them want to look outside of their tent to find out more?

I can honestly say, I’ve read far too many emails and private messages from young potential parents that are hesitating  as they make the decision to have a child. I’ve also read far to many messages from people that actually made the decision to not have children. And all because of the awareness they’ve been given without the information to know what it is they’re really basing their decision on.

Awareness has to happen. And I commend you for doing your part. But please don’t stop there.

Tell your story. Tell a tale. Show us a real human life.

Because I don’t want great people to not have great children just because they’re afraid of what they don’t understand.

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The reason we cry when someone is nice to an autistic child

By on March 29, 2013 in Autism

kiss cheeseburgerRecently a photo of a girl kissing a cheeseburger went around the internet like a lightning bolt, shared by millions and adored. I won’t get into the whole story but you can read about it here.

Most people loved the story while some others questioned, why is it that we cry just because someone is nice to an autistic child?

Stripping away our desire to have this happen with our own children, it’s a fair question. No one cries when someone does this for just any child. No one even makes it into a story and it certainly doesn’t go viral.

Is it because we’re supposed to feel pity or sorrow for autistic children? Is it because autistic children are poor little defenseless lambs in comparison? Is it because autistic children are viewed as the underdog and thus needing special treatment and we just love to hear that they get it?

Or is it because it simply does not happen? At least to us.

When you have a child with autism, you feel the stares as your child behaves in ways that others may not understand. We feel the judgments as people think we’re terrible parents while our child suffers a meltdown.

More so than that, we know full well just how cold people can really be when we ask for something as simple as an uncut burger and they huff, roll their eyes, refuse to appease us or do appease us but do it with an obvious amount of disdain for what we’re putting them through.

It’s because we know what it’s like to have to just up and leave a nice lunch out because someone refused to simply do something we needed and our child erupted into a complete and uncontrollable meltdown.

It’s because we know just how powerless we are against bitter, unhelpful and even rude people who simply do not care about you or your child.

So when we see someone, not just someone but their manager and other co-workers and an actual group of people who go out of their way to not just be understanding but to do something special, no matter how small, or how big, but to just do something they never had to do at all… it’s a tear jerker. It’s a shot to the gut… because we want so bad for someone, anyone to just be kind enough to do that to our own child. Just once.

Because trying and trying and trying to find someone who’d simply show us and our children just a little bit of compassion… we keep coming up empty.

And in this one photo, this one story, this one simple act… we find it.

In that instant, we have renewed faith. In others. In ourselves, that one day we’ll find someone like that too and should never give up. And most of all, in humanity.

There are kind people out there. People who won’t ask me to leave. People who won’t judge me. People who won’t grunt as I make a small request of them on behalf of my child. People who will not just accept that my child is there but actually make an attempt to make my child happy… no matter how silly it may seem.

There are people out there, who care.

Today, right now, in this world, that’s a nice thought. It’s comforting. There’s hope.

They’re happy tears.

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Don’t fear autism and certainly do not fear your own child

By on March 26, 2013 in Autism

autism fearAutism awareness, I think, comes at a price: Fear.

Don’t get me wrong, there is a very real need for awareness. New parents that know what signs to look for can get a diagnosis for their child early enough to begin therapies in the very earliest stages of life which, as we all know, is the best shot that the child will have at growing up to be fully independent.

However, awareness also makes new parents afraid. It gives them reason to question whether or not ever even have a child. It brings them great sadness and despair as they look towards the future with more uncertainty than ever before… and all because of autism. Many parents are even afraid to vaccinate their child, risking exposure to debilitating or even terminal illnesses rather than risk the possibility of autism.

I just recently received an email from a new mom, her 2 year old being recently diagnosed with autism and another baby on the way, is scared to death as doctors throw %’s and other facts at her about what the likelihood is that her second child will also be autistic. She hasn’t even had time to get over the grief, the guilt, the feeling of being so alone… and she’s thrust into the uncertainty of what may or may not happen with her new baby.

Having a child, it’s the most magical thing there is! It’s that happiest moment of a person’s life. It’s the biggest cause for celebration and elation. It’s something to be excited about, enjoyed and savored.

Instead, this mom and many like her are afraid. They fear the %’s. They fear the risks. They fear the uncertainty. And worst of all… they fear who their new baby may be. They fear their own, unborn child.

I can’t even begin to tell you just how wrong I feel that is. I can’t even begin to put into words just how much it hurts to think of parents feeling this way when it should be the best moment of their lives.

It’s because of autism awareness. That great deed we’re all doing by making people aware.

Sure, it’s mostly the media to blame, in making autism the most feared “epidemic” since polio. Even the charities, the ones that are supposed to be helping people, aren’t helping much by supporting studies that try to find some cause and furthermore, some way to prevent it. Those dollars could be better spent in educating new parents and in reassuring them that help will be there for them when and if it turns out that their child does have autism.

How many children were never born because their would-be parents were afraid? How many laughs were never laughed? How many first steps were never taken? How many lives that should have been… weren’t? And because of what… fear?

It’s our duty to not just make people aware but to support them in advance. To let them know that whether their child has autism or not, whether it feels like it or not, they are most definitely not alone.

Don’t just “light it up blue” and think you’ve done your part. Don’t just write a blog post spouting facts and figures. Don’t just share a tweet or a Facebook status and call it a day.

This April, for autism awareness month and Autism Awareness Day, don’t just be content with the same old stuff that everyone else is doing.

Instead, picture a friend or a family member or even just some random person out in the world somewhere that is considering having their first child and then think about what you would tell that person to reassure and comfort them, not scare them.

I’m not talking about only sharing ‘feel good’, uplifting stories or trying to paint everything with a rainbow glitter brush but rather to not just paint everything black. There are risks and there are facts and figures. But that doesn’t have to be all a person hears. It doesn’t have to be all gloom and doom.

Think about what you would do if it was “Autism Acceptance Month” instead. You would still share the numbers but your over all message might be a bit less scary than if awareness was your only goal.

The reality is, a child is a child, beautiful and innocent, with or without autism. And that’s cause for a lot of happiness. With or without risks, embrace that new life and rejoice in all of the happiness it will bring.

And if your child is autistic, I can tell you that, yes, it will be hard at first. But you won’t love your child any less. In time, your child will show you a whole new perspective on the world that you never dreamed possible. And one day you’ll look back and understand why you were afraid but tell yourself at the same time that you made the right, and best, decision of your life. Because your child really will be that important to you.

Please don’t fear autism and certainly don’t fear your own child. 

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