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

By on March 20, 2013 in Autism

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

By on March 18, 2013 in 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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A life taken away

By on March 16, 2013 in General

take a chanceI was talking with a friend about cancer, how it may take her life. It reminded me of my grandfather who’s life was taken by cancer. It’s… not a fun subject.

But I got to thinking about what exactly that means, “take a life”. Because, the more I think about that friend, the more I realize, that phrase does not mean what I think it means.

Life is so much more than a breath or a heart beat. It’s the culmination of all things experienced, affected, impacted, touched and shared from the moment you came into existence until… infinity.

You probably thought I was going to say until the day you die, didn’t you? But your life doesn’t end there, does it? Do people suddenly forget who you are? Do they suddenly forget the times you had together? Do people who learned something new from you suddenly unlearn it? Do they ever stop missing you?

Life isn’t breathing, it’s being.

Your first kiss, your first point in sports, your first risk, your first love, the first smile on your parents face when they see the pregnancy test results, the heartaches, the successes… all of it. And not just for you but for those all around you. Those who shared in those smiles, the person you kissed and all those lives that were enriched just by you being a part of it.

Yes, your future, the things you have yet to do can be taken from you. But that’s not your life either. That’s a bucket list. And it is tragic. I can not lie. But it can not, in any way, diminish the life you’ve lived nor the life that will continue to live on in others, in time and in space by you having existed and hopefully, being the best you that you can be.

Think of the butterfly effect. The theory that, if you go back far enough in time and kill a butterfly, that it could spark a chain reaction through time through cause and effect that completely and totally changes the way things are now.

That’s fine for the past. But today, right now, you are that butterfly. And your life, you, you have affected all there will ever be for the future.

Your breath and your heart beat can be taken from you. But your life can not.

Don’t ever let the thought of your life being taken away from you get you down.

Because so long as your life has been, it will always be.

And that makes you pretty spectacular.

So live your life, while you can and do all that you can with it. Because no one and no thing can ever take that away.

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The Story of Luke – The autism movie you have to see

By on March 13, 2013 in Autism, Autism Review

The Story of Luke is a movie that I’ve been following closely for some time. Even while they were filming, I was already a fan of their Facebook page and eager to see the end result. I’m very pleased to report, I was not disappointed.

Synopsis

95min. A comedy about Luke, a young man with autism who is on a quest for a job and a girlfriend. Starring Lou Taylor Pucci, Seth Green, Cary Elwes and Kristin Bauer.

The Story of LukeReview

The first thing the synopsis tells you is that it’s a comedy about Luke, which while true, is such a very small part of what this movie really is.

First of all, while it will make you actually laugh out loud in a few places, in others it’ll simply have you smiling and thinking “I totally get that.” While in other places, it will make you want to stand up and shout “You tell’em!!” and then shortly after have you crying your eyes out. And I’m a dad. I’m not supposed to cry. I did.

While this is the story of Luke, hense the title,  it’s also the story of those around him. Because in this film, even though almost everyone around him is “normal”, no one around him is really all that normal either. There’s the sometimes crazy, sometimes wise grandfather who even manages to be crazy and wise at the same time in some instances. There’s the depressed aunt, the midlife crisis uncle, the rebel son/cousin and then the doesn’t fit in with society daugther/cousin. There’s many more that Luke meets along the way as well.

I think the closest movie/story you could compare this to is Adam. I don’t know if you’ve seen that but it’s about a lonely man with Aspergers and his relationship with a girl. In Adam, the movie is very much about Adam, he’s always the focus. But it does give you a very real world glimpse into the life of a person with autism/Aspergers.

In The Story of Luke, while Luke is obviously the main focus, there’s so much more going on. His family evolves, his grandfather evolves, the people he starts to work with all evolve. His efforts, his honesty, his quirkiness and his mere presence makes the lives of those around him change. And it all feels very real. You never get the sense of there being a script or that someone had written this. It all feels so natural, as though it’s a true story.

One big difference I’d like to point out, between Adam and The Story of Luke is that, in Adam, it can be quite painful to watch because you envision your own child as Adam, later in life, living these struggles. It quite literally hurts to imagine your child growing up to be Adam and having a difficult life. It’s very well done in that sense. With Luke however, you never quite get that sense of your child being in his place. And it’s not a bad thing!

As a man on the autism spectrum myself and having a son with autism, I never once got the sense Luke was trying to be me or that my child could be Luke some day. I did have a few dozen “that’s just like my son!” moments though.

Luke stands apart and while very perfectly representing life on the spectrum, he never comes off as representing all autistics, only himself. And that’s quite powerful when you think about it. To relate to him, to see so many similarities and yet, seeing him as being his own man and not just a future version of your own child, is a feat not easily accomplished.

The movie is very much in your face with a lot of swear words, which are very cleverly done actually, very in your face boldness and off the wall terminology that will clearly make little sense to Luke but it’s never done to an extent that you feel it’s vulgar. Still though, it’s probably best to not have the little ones sit in to watch with you if you don’t want them hearing that language.

The movie truly is the story of Luke trying to be a man. Not just to “get a girlfriend” as in Adam but to walk out the door, get a job, get a girlfriend and, as his grandfather would say, “get his $hit together”.

I’ve watched The Story of Luke twice in one day and I still want to watch it over and over again because it’s just so well done. Each and every character is so perfectly portrayed and real. Luke is just so lovable, you really can’t help but want to be there, in the movie, to tell him how awesome he really is. Also, not many movies can shock me with what it says and then make me want to stand up and cheer at how the protagonist responds and then make me want to cry just a few scenes later but this movie does all that and more. And it always feels natural. Like I’m watching real life unfold in front of me.

The Story of Luke is not a movie to put in place of other movies about autism but it’s definitely a movie that you absolutely must include in your autism movie list. You’ll relate, you’ll learn, you’ll adore, laugh and cry.

I guess what I’m trying to say is, I highly recommend that you see this movie.

Awards

  • Audience Choice Award for Best Feature Film at the 2013 Omaha Film Festival
  • Best Film (shared with “Missed Connections“) AND the Audience Award for Best Narrative at the San Luis Obispo International Film Festival
  • Best Narrative Feature Award at Festivus Film Festival
  • Audience Award at SF Indie Fest  (The San Francisco Independent Film Festival)
  • People’s Choice Award for Best Film at The Saint Augustine Film Festival
  • Best Film, Best Actor (Lou Taylor Pucci), Best Director (Alonso Mayo) & Best Trailer at the Irvine International Film Festival
  • Audience Award at the Bahamas International Film Festival!
  • “American Indie Audience Award” from Fort Lauderdale International Film Festival
  • “Best Film” at the San Diego Film Festival

When/Where to see it

The Story of Luke comes out on April 5th in select theaters but it will also be available on iTunes as well.

Check out the trailer here: http://trailers.apple.com/trailers/independent/thestoryofluke/

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Parenting a child with autism is hard, being chastised for saying so is harder

By on March 11, 2013 in Autism, Parenting

Parenting is hardI’ve been an autism blogger for a while now and as such, I’ve also been an autism blog reader. I love to read the experiences and lessons from other parents, other autistics (I was diagnosed with Aspergers myself) and even from others such as care givers and “experts”. It’s all information for the learning.

One aspect of reading those other blogs is that it hurts to see a parent that just isn’t coping well. For what ever reason, they’re reaching or have reached their breaking point. It’s not that their child is bad, or impossible to handle, it’s just that the struggles have become to heavy to hold any longer. The “little things” have added up and the parent is reaching their nervous breakdown point.

I know that they’re reaching that point because they write about it. Which is good! It really is. Because that release combined with what should be support from other parents and people in the community may just be what holds off that nervous breakdown for one more day or week or month. Getting it off their chest or hearing from others, it’s a big part of why we write. Not just to share but also to reach out for help sometimes, or just to get something out there when there’s no one else close by to listen.

Most often times, that is exactly what happens. People come in to support them. But it’s not always like that.

Sometimes that parent comes under attack for making public the struggles they have with their child. Sometimes they’re made to feel much worse.

Here’s why: When you write, as a parent of a child with autism, you’re writing about autism but you’re also writing about your child. Publicly.

That means that all of the things you say about your child is out there, for the world to read, forever. Including your child when they get older. Including your child’s friends and peers as they get older. And when they do, will they see themselves as a burden on you? Will they think that you just always saw them as some broken kid that made your life hell?

These are all fair points and in many cases, parents choose to write anonymously, either never using names or by using fake names. Some parents just try their best to never “air their dirty laundry” and some parents are simply afraid to put themselves out there because they know that the attacks will be coming if they do.

The ironic thing is though, that when I visit parenting blogs, the ones that are just about parenting with no special needs people in the family at all, there is all kinds of complaining going on. Late nights, early mornings, long car trips, horrendous trips in a plane, toilet training, troubles eating, weeks of being sick and on and on and on.

And when I think back, the very first memories I have after telling people that I’ll be having my first child is of family and friends that are already parents telling me to kiss my sleep goodbye and that I’m going to lose my hair (faster anyway) and the grey hairs will be coming in full force now and on and on and on… again.

Of course, those people had no idea just how right they really were going to be since they didn’t have a child with autism… but I digress.

The thing is, parenting is hard. And parents need help sometimes, even if it’s just to vent or to tell other parents how hard has been or it’s going to be. That’s why there are parenting support groups! And they don’t have children with special needs!

Sometimes it seems as though it’s ok to whine, cry and complain and even make light of how incredibly difficult parenting is but if the child has any special needs, then it’s no longer ok to ever say anything about the struggles ever. That you’re going to damage your child for life by talking about how hard it is to be their parent.

I am not saying that it’s ok to make your child out to be some monster on the internet for all people to see for all time. You do need to choose your words carefully, even when emotionally driven, to ensure that it’s the situation that frustrates you, not the child. To help people understand that there is no love lost and you do not blame your child but that the lack of sleep or the frustration in failures is driving you to reach out for support… it’s not your child to blame.

Remember that what you say can be read for many years and have effects later on in life that you can’t foresee now.

But at the same time, if you’re reading something from someone and they’ve reached the edge of the cliff, a push is not what they need. They need you to pull them back up.

If you see a parent turning their child into “the bad guy” for all to see, that’s not ok and they need to be educated on the ramifications of their words. But educate them, don’t attack them.

If that person’s child is whom you are trying to protect, will pushing their mom or dad over the cliff really help them? Will making them too afraid to ever reach out again help that child? Will pushing a butt load of guilt on them for ruining their child’s future in one little blog post really be the best way to help that child out right now?

Parenting is hard. Period. Autism makes it ever so much harder. Even when the child is doing amazing, parenting is still hard.

Try not to make it harder, even if the good intentions are there.

Educate, not attack.

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