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

How many beautiful lives will go unlived due to Autism studies?

By on August 17, 2011 in Autism

The latest Autism Study of the Month is about the likelihood of a younger sibling having Autism when there is already a child in the family with Autism.

I had already discussed how important it is to make family decisions with your heart, not your fears… and how there is always some risk no matter what, even for your first child.

But seeing Google News explode with story after story about it… approx 700 at the time of this writing… I have a new concern.

No FearSpreading Information or Paranoia

At 700 articles, I have to wonder just what message it is that is being sent.

Most studies are negative in nature, focusing on what may be increasing the risks of Autism, but in this case, it’s outright telling people that their next born child will likely be Autistic.

With headlines such as “Parents with one autistic child more likely to have another”, is it really any wonder what the message is?

These studies are important because it brings experts a little step closer to finding real answers but in the general public and in the media, it’s a tool for fear and paranoia.

How many parents will these 700 articles reach?
How many of those parents will make a conscious decision to not have another child based on this study?
How many parents will have their family forever impacted by fear?

The Result of Fear

So you’ve decided to cut your family short for fear of having a child with Autism… let’s discuss:

  • The study found an 18.7% chance of having a child with Autism when you already have a child with Autism. That means that you have an 81.3% chance of having a child without Autism.
  • Is the child you already have beautiful? Amazing? Wonderful? Your next child will be as well.
  • If you only have one child, will you be improving that child’s life or robbing them of a loved one that they can love, cherish, grow with, protect and depend on?
  • Would your child have had the potential to be brilliant? A leader? Inspirational? An artist? A parent?

Lost Potential

I’m not trying to tell you that you have to have another child. If you were already debating/discussing it prior to this or other studies, that’s perfectly understandable. My wife and I did the same thing.

But basing these decisions on the fears created by studies in the news saddens me.

I can’t help but think of the lives that will never be lived, due to fear. The people that could have been presidents, doctors, teachers, parents or even, if they did turn out to have Autism, would have been beautiful people regardless of the titles they could or could not obtain.

My child with Autism is wonderful, he’s amazing! Why would I choose to not have another child when I have such a beautiful life growing before my eyes?

Children, all children, with or without Autism, have limitless potential. Even those that are non-verbal can sometimes surprise you. You just never know what can happen.

Let’s Talk Odds

Since we’re discussing odds, let’s look at some other odds for you and your children:

  • Odds of being the victim of serious crime in your lifetime: 20 to 1
  • Odds of having your identity stolen: 200 to 1
  • Odds of dating a millionaire: 215 to 1
  • Odds of finding out your child is a genius: 250 to 1
  • Odds of being considered possessed by Satan: 7,000 to 1
  • Odds of becoming a pro athlete: 22,000 to 1
  • Odds of winning an Academy Award: 11,500 to 1
  • Odds of becoming president: 10,000,000 to 1

These are some great reasons to be living in fear, to be living a goal, to be optimistic, to be pessimistic and simply… to be alive.

You can’t beat the odds every time, you won’t be a victim of the odds every time either.

The point is to live your life, to enjoy your life and to do with your life what you can while you can.

Don’t snuff out the potential of your children before they ever even have the opportunity to be conceived.

If you want another child, if you want to fill your family, if you want our child to have a younger sibling… do it.

Do not replace potential with fear.

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The risks associated with having another child

By on August 15, 2011 in Autism

Why did I leave Autism out of the title?

Well, that’s because there are far more risks to every childbirth than just Autism. There’s the chance of a still birth, cancer, down syndrome and a whole host of other disorders, illnesses, ailments and can have a child growing up in a hospital somewhere. In some cases, a death sentence. Some children are born with cancer that kills them 2 or 3 years after birth.

What a harsh way to start a blog post right? I know. But I think that sometimes we Autism parents can forget the realities of our situation… there are people out there who have it so much worse.

The reason for this post is that many people have concern over recent findings in a study that I covered earlier today on this blog: Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

riskThe risks of any younger sibling

That being said, that there are a large number of risks, you have to realize that any and all of those birth risks are possible in all births. That means, the first child you have has a risk.

Knowing that, any child you have afterwards has an increased risk.

How do I know that?

Well, if there’s a 10% risk of a disorder at childbirth… then having 2 children means you have a 10% chance and a 10% chance.. a 20% chance.

That’s actually not quite right, satistically but for the argument of this article, it’s close enough.

You essentially double your chances by having a second child because you took the risk twice. That increases every time you have another child.

That’s for anything and everything… not just Autism.

What does it say when you don’t take the risk?

So you don’t want to take the risk of having a second child with Autism? Have you ever asked yourself: “Why is that?”

Let’s not pretend that having children with Autism is not hard and it certainly does cost a lot… we all know that.

But is that the real reason? Or is there something more to it? Let me put it this way: If you did have get pregnant a second time and discovered the child would be born with Autism, would you have an abortion?

Take some time to really think about it… is there some level of denial there? What does this say about your acceptance of your child with Autism?

Conclusion

For me personally, I love my son with Autism, not despite Autism. I think he’s amazing and has taught me a lot more in 6 years than I did in the 30 years prior.

Having a second child with or without Autism just does not seem like a risk to me.

I’ve had a few people on Twitter ask me what I thought of the recent findings… they asked me if I would take the risk or avoid the risk.

My response was this:

Decide whether or not to have another child with your heart, not your fears.

Ask yourself if you love your child. Ask yourself if you love your family. Ask yourself if you want to add another beautiful child to your family. Ask yourself what you heart is telling you.

Weigh the pros and cons, I’m not saying that there are no financial responsbilities or unforeseen risks that may arise but be aware that those finances and risks are always there, regardless of siblings or studies.

If no one had children for fear of the risks.. there would be no children.

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Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

By on August 15, 2011 in Autism Study of the Month

the_warner_siblings

Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

Source: http://psy2.ucsd.edu/~kdobkins/O,2011.pdf

Abstract

Objective: The recurrence risk of autism spectrum disorders (ASD) is estimated between 3 and 10%, but previous research was limited by small sample sizes and biases related to ascertainment, reporting, and stoppage factors. This study used prospective methods to obtain an updated estimate of sibling recurrence risk for ASD.
Methods: A prospective longitudinal study of infants at risk for ASD was conducted by a multi-site international network, the Baby Siblings Research Consortium. Infants (n=664) with an older biological sibling with ASD were followed from early in life to 36 months, when they were classified as ASD or Non-ASD. An ASD classification required surpassing the cutoff of the Autism Diagnostic Observation Schedule and receiving a clinical diagnosis from an expert clinician.
Results: 18.7% of infants developed an ASD. Infant sex and the presence of more than one older affected sibling were significant predictors of ASD outcome, with an almost three-fold increase in risk for males and an additional two-fold increase in risk if there was more than one older affected sibling. In contrast, the age of the infant at study enrollment, the sex and functioning level of the infant’s older sibling, and other demographic factors did not predict ASD outcome.
Conclusions: The sibling recurrence rate of ASD is higher than suggested by previous estimates. The size of the current sample and the prospective nature of the data collection minimized many limitations of previous studies of sibling recurrence, including
ascertainment bias, stoppage, and over-reporting. Clinical implications, including genetic counseling, are discusse

Press Release from Source

You can read here: http://www.ucdmc.ucdavis.edu/newsroom/newsdetail.html?key=5594&svr=http://www.ucdmc.ucdavis.edu&table=published

Translation

Researchers studied 664 participants in the US and Canada, finding that 132 infants met the criteria for an Autism Spectrum Disorder.

54 children received a diagnosis of “Autistic Disorder”.

78 children received a diagnosis of PDD-NOS.

80% of all children with an Autism Spectrum Disorder were male.

The over all rate of Autsm was 18.7%.

The rate in which there was one older sibling with Autism was 20.1%.

The rate in which there was more than one older sibling with Autism was 32.2%.

In My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

This study does not assume any “causes” which means that, even though many people will pull a genetic association out of this, it could still imply a common environmental element to the siblings.

While a much larger study than previous studies, it is still a fraction of all families and even still, the numbers are averages. Which means that the risks will be higher than 18.7% for some families but also less than 18.7% for some families.

As I always say… there is always a risk, no matter what you do or what you know. There’s never a 0% chance.

These are studies on the risk of Autism, there are other risks such as being still born, born with cancer and so on and so forth. To add up all of the risks of all the possibilities could lead to insanity. If no one ever had a child due to risks, there would be no children.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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When Autistics Write About Autism

By on August 14, 2011 in Autism

There’s a very unfortunate bit of irony happening within the Autism community that is far more disappointing than ironic… we encourage Autistics to speak up and to not be afraid to say what is on their mind but then when they do, we attack them for not saying what we want to hear.

This has happened quite a few times over the years but even more so in the last week as autism.about.com had a series where adults with Autism were asked to submit a piece about themselves and what they stand for.

Repeatedly, these people would put themselves out there only to be met with some scathing comments from people. Several people have written about this as it really does have a big impact on the Autism community… and here’s why:

Autism Introverts

Autism itself is defined as a social and communication impairment which means that speaking out about something probably doesn’t come very easily. We encourage our children as well as all people with Autism to speak up.. especially about Autism.

Only an Autistic can describe what it’s like, how it affects them. We parents can give secondary accounts, how it affects us and how we perceive it affects our children but when it comes to first hand accounts, we need Autistics to break through their shell.

More so than that, we just want people to be who they are. Autistic or not, don’t be afraid to say what you have to say. Being who you are is one thing that only you can do. But many Autistics are either afraid, uncomfortable or just simply not interested in putting themselves out there.

As a result, Autistics make the best Autism Advocates but because of the nature of Autism itself, it also makes them the worst advocates.

arguingDisagreeing is hard to do

In society, not just the Autism community, it’s not uncommon to see people attack others that they disagree with.

On the internet, people don’t have to look you in the eye to say something hurtful. That makes it a lot easier. You don’t have to deal with their unease, their obvious fear, their expressions… you can just say the most hurtful thing you can think of and leave.

This happens far too often and it’s not just limited to hot topics like religion or politics. It happens far too often in the Autism community as well and not just between parents.

I’ve seen Autistics write about themselves, how proud they are of themselves. Often they write about how they advocate on the higher functioning end of the spectrum only to be attacked by parents that have children on the lower functioning end of the spectrum because they didn’t say what they wanted to hear. The parent disagrees so adamantly that they attack the Autistic person because what they say doesn’t mesh with the parent’s experiences.

It happens with many other topics as well… sometimes they get attacked for the most simple things too, seemingly random things. They can just be positive and be attacked for it, or negative and attacked for it. There’s no rhyme or reason. Nothing is safe.

On the surface, it appears that simply stating “I disagree with what you’re saying because” has become impossible to do, instead becoming a verbal attack of some kind on their intelligence, their logic or some other personal aspect of their being.

No Free Pass for Autistics

All of this is not to say that Autistics can just say or do anything they want without judgement. Autistics still have to abide by the same code of ethics, etiquette and behaviors as the rest of us. Autistics can’t just make their own attacks on people or be rude and not expect some backlash.

If we are to be fair and wish for equality in acceptance, then those that behave poorly should expect some anger in response.

Not all situations are uncalled for… in some cases, an Autistic will be rude or do things that are simply unacceptable and the response from the people is not entirely unexpected. Perhaps some would call it over board but certainly not unexpected.

I Am So Disappointed

In most cases, I am simply disappointed. I’m not sure I can put it any other way than disappointed.

Many times people say things I disagree with and most often times, I don’t say anything. If it’s blatantly wrong however, I may speak up but I’m always careful to be respectful. I don’t know those people, I don’t know what drew them to their conclusions.

I respectfully disagree and state what I think and why. It’s always been my experience that this is the proper way of civil discourse.

What I see most of the time, however, is people calling each other idiots (or other derogatory names) and question their intelligence, or upbringing or something along those lines. Usually they state what they think and don’t even provide a reason for it… they just make their attack, their stance and that’s it. Giving people no recourse but to attack back since there’s very little to either understand or make a case against in rebuttle.

It is so very hard to take something you’re passionate about and disagree with someone respectfully. It’s even more difficult to be civil with someone that so strongly contradicts your beliefs.

But it’s not impossible.

Acceptance… We’re Not Ready

I really want for society to be more understanding… I really want for people to be more accepting of the differences in people, especially when Autism is involved.

But I think it is very clear that we’re just not ready…. as a society, we’re simply not there yet.

Until we can put aside our own hatred, our own anger, we can’t expect those that don’t understand Autism to do it.

We encourage Autistics to come out of their shell, to speak up despite their anxiety and fear and then, when they say something we disagree with, we immediately lash out and bully them back into their shell.

We do this to our own community, we do this to our own children… and yet we expect others to be more respectful?

There is something fundamentally wrong and I am so very disappointed by it.

The Autistic Me has a great post about all of this, some others have discussed it on Facebook and Twitter and in response, Lisa from Autism.About.com has since taken down the 2 most recent posts that were written by adults with Autism.

If it was your child

My advice is, when you see a post by a person with Autism, imagine that person is your child. Imagine you’ve encouraged you child for many many years to speak up and to be brave… to not worry about what people say and just share who they are with the world because who they are is beautiful.

If you and everyone could do this, the responses would be vastly different. Even if you disagree, you’d respond with respect.

Disagreements do not need to be charged with anger or hatred. Disagreements can be made without assumptions of the person. Disagreements can be made without attacking the person.

If that was your child that spoke up proudly, you might still disagree but you’d disagree in a very different manner.

If you are an Autism Advocate, then perhaps you should consider that all people with Autism are your children. For we speak for all, not just our own children. And we encourage all, not just our own children.

Don’t be so quick to hate. Don’t be so quick to assume a person’s history or intelligence level just because you disagree with them.

Speaking out is hard. Be proud… even if you disagree. Be respectful, even if you disagree.

If you won’t… how can you expect others will?

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Autism blogs are not news!

By on August 12, 2011 in Autism

I’m finding more and more of a disturbing trend lately… where Autism blogs, by parents, are deeming themselves news media and submitting their work to Google News and other sources.

The media, especially aggregators such as Google News, make it especially easy these days for average people to be heard… not just heard, but to be included in with the other news stories.

Many news sources allow “reader opinions” or even let them write in as “editorial pieces”… which is good, to a point. However many people don’t differentiate these stories from actual, fact checked and verified news stories… not that actual journalists are a whole lot better these days, but you get the point.

fact or opinionWhen the news isn’t the news

There’s a code by which journalists go by, or at least should go by. That is that they reports facts as facts and opinions as opinions. That means that they need to get on the phone, go to the locations, talk to the people and verify that facts are facts.

The news agencies have a very real obligation to the public to bring current, accurate and fact checked information… obviously this doesn’t happen very well, especially with recent events in the media but in practice, this is how it’s supposed to be.

Blogs are a way for people to share their opinions, to add commentary to what they find in the news and to share information that they have acquired. Bloggers can do a fair amount of fact checking but for the most part, the fact checking involves what they read from the media, from other bloggers, from other websites that have random information and some people even use Youtube.

Two wrongs do not make a right

Many bloggers find that the media is slanted or even lie to tell their own versions of stories… so those bloggers write their blogs to combat what they find in the media, to argue their side of the story.

Eventually, they discover that they can submit their own stories as news sources as well, thinking that their own slant will help to balance the system but this couldn’t be more wrong.

First of all, two wrong opinions, event if opposites, have no guarantee of being right. Also, even if one is right and one is wrong, who should the reader believe? Because most people will believe one and not the other, rather than find middle ground or seek more information.

Worst of all, most people won’t even read information from both sides in the first place.

No room for a second opinion

People don’t read the news from various sources to get a second opinion. If they get their news from one source, they depend on that source…. and will rarely go to another source. Especially if it’s the same story.

Which means that they won’t fact check it themselves, they just believe what they read and take it as fact. You see it all the time when you talk to people that argue with you on current events… they’re so sure of something that you believe differently… it’s because you got your news from different sources.

If a person believes your blog posts to be their dependable news source, good for you…  bad for them. I feel bad for them because they now think your opinion is a fact. And whether you are right or wrong… no opinion is fact.

When the solution only adds to the problem

I see these blogs in the Google News lists and I cringe. Actually, I see red. It really upsets me.

These people, upset that the media is deceiving them, go out of their way to deceive people. What kind of messed up logic is that??

It’s even worse when I continue on to read them and it’s so blatantly obvious that it’s an opinion, and more so, a wrong opinion… that is so blatantly obviously slanted to their own views…. that’s what really upsets me.

Now, there’s nothing wrong with having a blog, there’s nothing wrong with even getting hundreds of thousands of readers… if people like your reading, like what you’re saying… great work! Good on you.

But your blog is not news!!!

I wish there was a way to “report” these sites or people such that they’d be de-listed because there’s just no way that they should be included with other news sources.

But as it stands, there is no way to do that. We have to filter ourselves and just hope we can recognize a blog post from a news source.

If our community isn’t messed up enough with the conflicting messages we send the public, do we really need to make it worse by doing this?!?

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