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

When raising Autism Awareness gets out of hand and becomes something else

By on August 25, 2011 in Autism

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

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Clinical Trials – Where are they? How do I get involved?

By on August 24, 2011 in Autism

Have you ever wondered how those clinical trials come to be? Where they are? How you can get involved?

Ya, me neither. But now that you are wondering, I have found the man that has the answer to these questions.

Mr. Sarkis Dallakian is the father of two and has come up with a way to give you these answers on an on going basis. What he has built is nothing short of genius, merging Google’s Maps technology with the clinicaltrials database giving you a visual and searchable dynamic map of your area with information on who is doing it, why they’re doing it and how you can be involved.
ClisMap

ClisMap

ClisMap is not just the best tool, but the only tool that I know of on the net to get detailed, easy to understand information on clinical trials anywhere in the world. Not only is it feature rich (allowing you search by many categories), it is easy to add it to your own site allowing you and your visitors access to this information as well.

Yesterday, I had pleasure of talking to Mr. Dallakian, I thought I’d share some of that with you here. Below the interview is an example of the ClisMap integrated right into this site, specifically targeting Autism trials!

 

1. Who are you and what do you do?

I’m a research programmer and web developer. I work at The Scripps Research Institute, in La Jolla, California, which is one of the world’s largest, private, non-profit research biomedical research institution. http://www.scripps.edu

2. Do you have children with special needs? Can you tell us about them?

We have two kids, my son is 5 years old and my daughter is 7. We had no special problem with our daughter. However, with our son, we noticed that he was having problems with speech when he turned 2. We were very afraid that he might have Autism spectrum disorders and that our worst nightmares might realize. We were fortunate enough to meet another couple who went through the same troubles. Long story short, my son is now doing good after we spend countless hours paying special attention to him. Now he goes to kindergarten and he is doing fine. 

3. How did you come up with the idea for ClisMap?

In 2008 Google introduced Google App Engine (http://code.google.com/appengine) and I started experimenting with that. I started building websites and learned web development skills. I was also watching many NIH webcasts (http://videocast.nih.gov/PastEvents.asp), in my spare time, and learning about different Clinical Trials. I also visited http://clinicaltrials.gov to see what kind of information is available there. This website is a great resource that many clinicians are using to find information about Clinical Trials. It has advanced search options including location based search. However, there was no options to search for clinical trials near specific location, similar to the one we use on Google maps. In general, clinicaltrials.gov is oriented more towards clinical investigators rather than patients. I started searching for a site that would let me find Clinical Trials based on my location. I wasn’t able to find one after searching hours on Google. That’s why I decided to create ClisMap as it’s useful for both me and the community. 

4. How often is ClisMap updated? Where does it get it’s information?

ClisMap updates its database daily. It takes this information from http://clinicaltrials.gov RSS feed and stores it on Google App Engine. 

5. How can people best use ClisMap? How do you get the most out of it?

People can best use ClisMap for searching for clinical trials nearby. For instance, one can search for smoking or obesity related clinical trials to see if there is one available nearby. You can also browse for clinical trials by conditions, interventions or sponsors to see who are conducting these clinical trials and why. 

6. What other projects do you have?

I also run a website called Food Prints (http://food-prints.appspot.com). This was my first Google App Engine project and it has been one of the top 5 projects featured in Google App Engine Gallery for 3 years in a row.

7. Do you have anything else that you’re working on?

I’m now spending most of my free time (besides family and G+) working on Heritage Health Prize Competition which offers a US $3 million Grand Prize. I’m not expecting to win this prize but rather learn new things from best data mining and machine learning specialists around the world.

Once again, thank you Mr. Dallakian… and now, here is an example of his ClisMap in action:
(If it doesn’t show up the first time, just reload the page. This isn’t a Clismap issue, it’s a wordpress+iframe issue.)

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If I had Autism

By on August 23, 2011 in Autism

questionsAs I see parents writing articles on what Autism is, or how to describe it, I wonder how many of those people ever asked themselves what it would be like if they had Autism themselves.

Have you thought about it?

I have.

These are just some of the questions I asked myself:

  • Would I see the sounds I hear?
  • Would it be beautiful? Would it be painful?
  • Would I feel the ridges of my finger prints when I rub my hands together?
  • Would I feel anything at all?
  • Would people expect me to have special skills?
  • Would people expect me to have no skills at all?
  • Would I speak the same language as everyone yet still not understand anyone?
  • Would I be unable to speak any language but understand everyone perfectly well?
  • Would I require constant control over myself and my environment?
  • Would I lose control easily?
  • Would I really need hugs?
  • Would I really not want to be hugged?
  • Would I notice the flicker of a fluorescent light?
  • Would I not notice the dangers all around me?
  • Will I be loved for who I am?
  • Will I be hated for who I’m not?

Even though some of these pairs seem like opposites from each other, would I still answer yes to both? Would my answers change from day to day?

Would I be able to explain these things to other people? Would I want to?

Would I be me? Would I be less than me? Would I be more?

There’s so many more questions…. I quickly find myself becoming overwhelmed by it all but strangely, as much as I’ve thought about this a lot, it never really hit me like this until I asked myself…

If I had Autism…

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The life of an autism parent advocate

By on August 21, 2011 in Autism

In one way or another, all parents that have a child with Autism will become an advocate… whether they are just explaining to fellow family members why their child behaves how they do, or if it’s fighting for their rights in schools and other services or if it’s speaking out to the world on behalf of all people with Autism… we all come from the same place, we all do our best with the best of intentions.

In some ways, it sounds glamorous… putting up the good fight, speaking to the hearts of others… but at the same time, it sounds like quite the struggle. A constant, tireless battle requiring a love filled heart surrounded by a skin of steel.

I can’t speak for everyone, only myself, but one could imagine that the stories of most people aren’t far off from what I’m about to tell you.

What you already know

If you’re reading this, you’re likely a parent. Which means you already know all about the cost of parenthood, the constant running around, the constant illnesses, the constant battles at bed time and so on and so forth.

This includes the unexplained rashes, heart break over bullying and more.

What you might not know

With Autism comes a host of other issues, including no sleep, irregular diets, regular therapy appointments, battling the education system, having to fight with the government for coverage and assistance and a whole lot more.

Bullying is far more likely as well as far more frequent. Friendships are far less likely and less frequent.

Regular clothing can be painful, bike riding can take 2 to 3 times longer to learn, special equipment may be needed such as trampolines or Lycra(stretchable) bags or bedding. Some children even need weighted vests.

The diets aren’t just stressful to keep on top of, but in some cases can be quite costly. For example, I can buy a loaf of bread for $1.80 at the store…. or I can buy a loaf of gluten free bread for my son for around $8. A small bag of gluten free pretzels, containing about 12 pretzels, costs $5.

The cost of success

So it turns out that I’ve been doing rather well at being an Autism Advocate…  but the question is, what does “doing rather well” mean?

Well, no parent becomes an advocate for the paycheck.

I have been asked by several blogs, even charities, to write for them. I’ve done several radio interviews, been in the paper a few times, even had CNN call me once. I have almost 10k followers/fans/circles across the various social networks and I get between 5 and 10 emails a day with questions or just to share their story.

All in all, I call that a success and am quite proud. However, there is an inherent problem with all of this.

As it adds up, I find myself spending 1-3 hours a day on Autism advocacy… that’s my own personal time.

When you consider that I have a 9-5 job just like everyone else, plus a family of 4 which I love to spend my time with and then various other responsibilities and commitments…  let’s just say that the 24 hour day gets used up pretty quick.

On top of that, as I said earlier, therapy, diets, special supplies and more really begin to add up when being a parent tends to cost a small fortune as it is.

The cost of success being an Autism parent advocate is that you get less hours, more bills and even greater stress.

It’s not a thankless job

The one saving grace is that it’s not a thankless job. I often hear from others how grateful they are and for that, I myself, am grateful. If money wasn’t a problem, that’s all I’d ever need. A thank you means everything to me.

Welcome to the crossroads. That’s where I am now. I love being an Autism advocate. I love hearing from people… their good stories, bad stories… I love writing the articles, reading articles from others…

The problem is, I simply can’t keep devoting hours of each day while the bills pile up and begin to fall behind.

I come across twitter account after twitter account, facebook fan page after facebook fan page… inactive. And I can’t help but wonder if they ran into the same crossroads. Did they lose interest? Or did they find that they simply couldn’t commit to it any longer?

Autism advocacy: it is glamorous, it is a struggle… it is all those things to different people.

The good news is that the numbers keep growing. Awareness keeps increasing. With every person that has to hang up their hat to focus on their family, there’s another 2 people there to take their place.

No matter what. Stay strong. Stay positive. And remember, support is where you give it.

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What does Pikachu have to do with Autism? Allow me to explain.

By on August 19, 2011 in Autism

My son has recently gotten on board with the Pokemon craze that many of us parents so desperately try to avoid. It’s costly and annoying and the effect it has on children borders on an addiction.

Still though, I find myself strangely compelled by it myself as I found myself having a lot of questions about it. The answers, I’ve discovered, are really quite inspiring.

pikachuWho is Pikachu?

In the cartoon world, Pokemon are essentially the animals of the planet. Water, fire, plants, bugs, sky… you name it. Where we have living creatures on Earth, there are living Pokemon in their universe.

Pikachu is one such creature… he’s a cute little mouse like Pokemon that is an electric type, meaning that he can create thunderbolts and other such electrical attacks.

In the cartoon, trainers capture these Pokemon and train them to do battle. The Pokemon battle each other but are all generally very friendly. They battle, one wins, one loses… they celebrate after and go on their way.

What makes Pikachu the special one?

Well, to start with… Pikachu isn’t very powerful. In fact, there’s another Pokemon called Raichu that is actually an “evolved” version of Pikachu… a level up, if you will. And even Raichu is not very strong compared to many others.

In fact, there are some Pokemon that are believed to have created life, the universe and the rest of the other Pokemon. Some of them are deities over dimensions such as space and time.

So why does Pikachu get all of the attention? Well, he has one quality that the rest of the Pokemon do not have… a never quit heart the size of the moon.

Repeatedly in the cartoon and especially in the movies, you really get a sense of just how tenacious Pikachu really is… how he really would do anything for his trainer, for all people and for all living creatures. Over and over again, there are situations where all hope seems lost and this little mouse like creature just never gives up.

In one movie, Pokemon were pit against each other… not just to battle for the sport of it, but to hurt each other… and this one lone Pikachu refused to fight. He took hit after hit…. never once attacking back.

The truly amazing thing, once you get into the series, is seeing how this brave little guy with such a big heart influences his trainer… Ash. Ash is an egotistical little kid who thinks he’s the best… who thinks he can do no wrong… can never lose… and as the series goes on, you can see him become the human equivalent of Pikachu… a very brave, very determined, a very modest  boy with an over sized heat.

Wait, so what does all of this have to do with Autism?

Well, first of all, did you know that Pokemon was created by a man with Aspergers?

On top of that, I can’t help but feel a connection somehow… when I picture this modestly little, somewhat weak Pokemon besting some much stronger adversaries, becoming the most loved out of all of them, all around the world…. being a source of inspiration and wisdom for the one that is supposed to be training him….  I see a bit of that in my son.

My son might not be the strongest, fastest or smartest in the world… in fact, he might have a lot going against him, what many would see as weaknesses, but I know that he can over come any adversary or beat all odds so long as he never gives up and keeps his heart full of love.

My son isn’t Pikachu and I’m not his trainer, but he is my source of inspiration and wisdom… he is the one that has shown me how to be a much better person by being more like him.

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