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 Awareness Day – A few things to consider

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

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

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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Autism Numbers – Just how many people are being diagnosed with autism anyway?

surveyA recent survey just came out (March 19, 2013), although the news is calling it a “study” which gives it more importance. That survey is abuzz around the world as people are now telling each other that the autism prevalence numbers are at 1 in 50 school children.

Very quickly, people took to social media in shock and dismay at these new alarming numbers. Some were even more scared than before of their environment, some were mad that the numbers were so high and yet being ignored and others shouted out “I am not a number!”

Still though, it’s just a survey. A phone survey.

A margin of error

In this survey, they phoned some 95,000 parents and of those, only 25% actually participated. And even then, chances are that only those with children that were diagnosed were inclined to take the survey seriously. Oh and let’s not forget, not all parents have photographic memories or even know as much about autism as they may claim to, so there’s that.

The big thing to take away here is, it’s just a phone call to some parents. They didn’t ask for nor look at any medical records or talk to any doctors or officials. They didn’t compare what a parent said to actual facts or reports. It was all based on the honesty system.

Now, that’s not to say that the numbers aren’t still alarming or even worth taking note of but for the media to make a big deal out of it… not so much. The truth is, the CDC probably should never have released such an unscientific piece of info as this in the first place.

This places into question the other studies, such as the one that found that 1 in 88 children are on the autism spectrum.

This one was done using medical records and in talking to professionals. But still, how accurate is it? Certainly more accurate than a phone survey but still, it still has a rather large margin for error itself.

Consider this, many people (children and adults alike) still go undiagnosed or even misdiagnosed. I’ve had two people, just this month, message me asking about getting assessments. One person, an adult, said that they are trying to charge her $1400 to do it. She can’t afford that and will likely go undiagnosed.

Another person, a parent of a child, said something similar. Because of where she is, they want “thousands” to do an assessment on her child. Again, that’s just not feasible.

Where I live, very remote, it’s actually quite difficult to get an assessment and even harder to get services simply because of geography. There are no major centers nearby.

Then you have the, all too familiar, doctors that seemingly either diagnose every child they get with autism to help them get access to services or never diagnose any children because they don’t want to contribute to the mass hysteria and hype.

There’s also the issue of getting the referrals for the assessment in the first place. I vividly recall telling my family doctor not once but twice that I wanted an assessment for my son and both times he insisted that my son did not have autism. After I returned with the official diagnosis, I gave him a book on what autism is. He is a good man, he read it.

But these cases are quite common. And should be considered.

Yes, it’s far easier to get a diagnosis now than it was 20 years ago and yes, some doctors are all too happy to hand out diagnoses like they’re Aspirins but the fact remains that as much as it is easier, it’s still not easy.

Many people still face a multitude of hurdles and even if those are met, there’s no guarantee that the diagnosis is a correct one.

And so the CDC sends out a team to pour through the paperwork of this whole mess and make some sense of the numbers.

The result, as I said, is far more accurate than a survey with random parents but it still has it’s own margin of error.

On the plus side

So what good can come of wrong or even inflated (maybe even under-estimated) numbers?

Well, services for one.

Many times these alarming numbers can spur a person into action, giving them the drive and motivation needed to start a new program and provide a new service that was lacking before. They see this large number of children that need help and they decide that something has to be done.

Sometimes, rarely but sometimes, these numbers can even push autism up as a priority during government meetings and help in funneling a little extra funding towards the autism community.

One thing it most definitely does is raise autism awareness. Even if it’s very negative, in the form of fear, it still prompts new parents to find out more. And that can lead to an earlier diagnosis for their child and as we all know, early intervention is key.

A grain of salt

So keep in mind that when you read these news stories or “studies” that there is always a margin of error. There is always a certain portion of it that is inaccurate and that there is always a positive and negative side to these things being out there.

Shutting them down may prevent some services or information from ever being out there but promoting these things may also perpetuate unnecessary fear and maybe even harm, if it pushes more people to stop vaccinating or even from having children at all.

Think of it this way… it’s just a bunch of egg heads fiddling with numbers and proving… nothing.

And the media is doing its best to turn it into a news story that will get you tuning in.

When you see it for what it is, it doesn’t seem so bad.

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If 1 in 88 did NOT have autism

Let’s pretend a study just came out that found out that 1 in 88 people did not have autism. What would the media reports look like? What would be some of the early signs and symptoms?

I imagine it would look something like this:

What to look for

  • exhibits a tendency to push cars back and forth rather than perform basic geometry
  • eats everything
  • places blocks with no regard to shape or color
  • babbles incoherently at very early age
  • shows no real interest in any one specific topic, spreading attention all over
  • sleeps for excessively long periods at a time, sometimes 8 hours straight
  • smiles for strangers and has no problems with large crowds

Media reports would include:

  • Epidemic proportions as more and more children are being diagnosed as lacking autism
  • Government ill prepared, provides little funding and lack of services for those without autism
  • Company finds great community support as it has seems to have no problem hiring people without autism
  • Children without autism have trouble fitting in at school, constant disruptive need for socializing leading to lower grades
  • New medication being tested to help children be less “different” than those with autism
  • Brain scans show overload of electrical activity in those without autism
  • Parents insist that insurance covers therapy to help children regain focus and stop being such social seekers

Think about it

If everyone learned what they want to learn, and focused on it, and sacrificed social conventions to indulge their desire to immerse themselves in the fields and subjects they love… those who did not do that would seem quite bizarre. Even, outcasts. Some people would want them medicated.

Just consider, if a class of 30 children had one child that just kept talking while the rest felt a build up of anxiety and unease because of it, that child would be removed and put into a “special” class where they could be with other social seekers.

If a group of 87 people focused so intently on their subject of interest that they became experts in their field, the 1 remaining person that could never decide, that could never focus and could simply never give themselves 100% to one subject… that person would be considered a misfit, a failure and not functional in society.

Another way to look at it

A company seemingly comes out of nowhere actively looking for these “different” people. They need social people that can provide the customer service or sales expertis. And the management have made accommodations for them by setting up social areas for them go that would not disturb other workers. By allowing them breaks and leaves of absence if they really need it since they aren’t as dedicated and focused on their work as everyone else.

That company would be in the news and heralded… a bright light in an otherwise impossible society of ill equipped corporations that neither accommodate nor want anyone that doesn’t fit their mold.

On the internet, there would pictures of people around a water cooler, smiling and talking with inspiring captions about how they just do what they love, no matter what anyone thinks, no matter how much they don’t fit in, because we love them, no matter how society sees them. We’d be asking for people to just accept our children no matter how foreign they seem, no matter how bizarre they may look standing on the street talking away and waving at people for no apparent reason.

Role reversal

love hate reflectionAll of this and it’s only because there is 87 and then there is 1.

But if you are reading this and nodding your head, or any single piece of any of this has you chuckling or thinking “that’s true”, you have to realize that all it took to do that was reversing the numbers.

So let me ask you… what really is the meaning of “normal?”

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