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 apples talk to oranges about steak

By on September 26, 2011 in Autism

I’m sure you’re aware by now of the dialogue going on over at The Thinking Person’s Guide to Autism, and if not… it’s probably a good time to give it a once over. Keep in mind that there are some very long posts and, depending on when you read this, more coming soon… make sure you set aside some time before popping over.

I’ve been biting my tongue through this “dialogue” for a variety of reasons. If you don’t want to go into it with any preconceived notions from yours truly, go there now before reading my post.

How this all started

Let’s just be clear on where this all originated. The “non-disabled parent” wrote a post (that you can read here) about an imaginary parent going to a movie that made rude remarks about Down Syndrome and used the R word and so forth… he imagined how that parent would feel if that parent had a child with Down Syndrome and had to hear this in the movie and all the rest of the audience laughing at it.

In response, the “disabled adult” (autistic) took great offense (you can read it here) to this in that he can’t possibly know what it’s like to be disabled and has no right to be so offended.

Obviously this is a very short summary and I’m paraphrasing, so please feel free to read those two posts to understand exactly what transpired.

But to reiterate… there is now a “discussion” about what parents can and can’t understand, can and can’t discuss and who the real “advocates” are… based on a parent writing about how another (imaginary) parent might have felt.

He didn’t imagine himself being a child with Down Syndrome… he wrote about how a fellow parent might feel.

Apple, meet orange… begin discussion about steak.

Where does this discussion lead?

Hopefully to a good place, hopefully some really good mutual understanding and maybe… if we’re really lucky, even teamwork toward the future will come of this.

However, there’s always different people who find different meanings from all things and therefore, there may also be some much more… well, I would call them “less positive” possible outcomes.

As one person linked to the discussions, I replied to their link saying that I’m biting my tongue.

A woman replied to me, this is what she wrote:

Me: Autistic parent of an autistic child
I’ll comment on this tomorrow

Person without a disability
Why can’t you just come out and say it?

I did not reply to her, I once again bit my tongue because I did not see any possible good outcome from a discussion that begins in that tone.

Still, I really wanted to ask… Is this how we are to address each other from here on out? Is this truly what it’s coming to? Are we, two groups who are fighting the labels that people place on us, going to now refer to each other using labels?

What’s better is… this woman has no idea if I have Autism or not. This was a completely presumptuous reply based on my “biting my tongue” comment.

Is this truly the road we’re going to go down? Is this going to be a benefit to anyone?

Communities?

Adding to the further separation and division, adding to the need to be labeling people in the effort to come together and abolish labels… we now have the Autism Community, Autistic Community, Disability Community and Non-Disability Community… and those who feel that some people belong in multiple communities while others don’t belong in any communities at all.

What does this all mean?

As a group, we’re asking society for acceptance of those that are different… yet we can’t even accept the differences in each other.

We fumble over ourselves declaring superiority, inferiority, privilege, rights, responsiblities and more… in an effort to separate and divide ourselves, to judge one another, label each other and “feel about” each other… all the while telling outside observers to simply accept the differences within us all: gender, race, income, special needs, etc.

You might as well get money management advice from a random homeless person.

Steak

The meat of the discussion, which everyone is discussing but few can seem to agree on, is that we need to listen to each other, talk to each other and work together.

There’s an old saying… “Believe in yourself and others will believe in you too“. In this case, we have to accept each other so that others will accept us as well.

And by us, I don’t mean “non-disabled parents”, I don’t mean “disabled adults”… I mean us. All of us. Advocates. People. Human beings.

Telling each other to shut up or to speak up or what to say or what not say is not the best message to send to the world, it’s not the lesson we wish of others to learn, it’s not the example we need to set.

We all have a vision of how best to educate the world, we all have a vision of how everything would work the best… we all have our own visions. That’s part of what makes us all unique. Those visions all come from having a different life, different experience, different education, different soul…

So long as our visions create conflict, none of them will ever come to life. And it won’t be society’s fault. It will be our own.

Apples and Oranges are different, but they’re both good for the world. They both grow, reproduce, respond well to proper caring and nurturing… and at the end of the day, they’re both fruits.

In fact, maybe they’re not so different after all.

I really hope for the best in these discussions so that we can accept each others differences, rejoice in our commonalities and find a way to work together in educating others how to do the same.

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Autism Study of the Month: Religious Belief Systems of Persons with High Functioning Autism

By on September 21, 2011 in Autism Study of the Month

atheist

Religious Belief Systems of Persons with High Functioning Autism

Source: http://csjarchive.cogsci.rpi.edu/proceedings/2011/papers/0782/paper0782.pdf

Abstract

The cognitive science of religion is a new field which explains religious belief as emerging from normal cognitive processes such as inferring others’ mental states, agency detection and imposing patterns on noise. This paper investigates the proposal that individual differences in belief will reflect cognitive processing styles, with high functioning autism being an extreme style that will predispose towards nonbelief (atheism and agnosticism). This view was supported by content analysis of discussion forums about religion on an autism website (covering 192 unique posters), and by a survey that included 61 persons with HFA. Persons with autistic spectrum disorder were much more likely than those in our neurotypical comparison group to identify as atheist or agnostic, and, if religious, were more likely to
construct their own religious belief system. Nonbelief was also higher in those who were attracted to systemizing activities, as measured by the Systemizing Quotient.

Translation

This study is pretty straight forward… the researches picked 192 individuals from an Autism website that discussed religion and also had 61 individuals with HFA (High Functioning Autism) fill out a survey.

The results showed that these people were more inclined to be atheist or agnostic in comparison to similar groups of NT (neurotypical) individuals.

The “Systemizing Quotient” is essentially a measure of how analytical a person is, or how likely they are to construct systems… rules, mathematics, abstracts and so forth.

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.

Personally, I’ve often wondered about this myself as the logical, analytical mind is often far more drawn to an area of science rather than faith… however, even in a study like this, even with over 250 people involved, it’s still highly questionable since the researchers are drawing conclusions from conversations about opinions.

Opinions are very difficult to measure to begin with, much less when it’s among random conversations that you’re not involved with… involving groups that you may not fully understand. There’s no mention of how much Autism expertise these researchers have.

There was a “coding principle” which is outlined in depth within the study but still, even “principles” have their faults via human interpretation.

Even if accurate, I’m not sure what purpose this study serves other than general curiosity.

 

“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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Autism blogging – pro tips from an amateur

By on September 21, 2011 in Autism

I thought I’d change things up a bit with this post, rather than writing about Autism itself, I’d answer a rhetorical question I get a lot. Yes, I know rhetorical questions aren’t really meant to be answered. But in this case, I think it makes for a good blog post.

What is so different about your blog?

blogThe honest truth is that I’m really not that great at writing, as some people continue to try to convince me. It’s just that I always try to keep some key things in mind as I write, which has come to serve me rather well.

Here are some basic rules that I try to follow:

Never assume the reader knows me or my children

I treat every single post as if it’s the first post that the reader has ever read of mine. I do have a lot of subscribers and other returning readers but I also have to keep in mind that every single day (hopefully), there will be new readers too. That means that this blog post right here is being read by someone that hasn’t read a single word from me before today. Maybe it’s you! Welcome.

I sometimes allude to a bit of my back story and will often put in links to previous blog posts that covers that back story more in depth. That way, if someone already knows it, they can skip it and if they don’t know, they can either go and read it for more info or they can just skip it, being satisfied with the small bit I shared.

It also means that not every single reader knows my boys… so I always make sure to add in a little about them each time I mention them. For example, Cameron (6yrs old, has Autism) and Tyler (3yrs old, without Autism).

This way, a very short and little burst of info and presto, people now have what they need to know as they continue reading from there… whether it just be the rest of this post or any new posts they may read of mine from here on out.

“Never” and “Always” are two words you should always remember to never say

It’s a funny sentence but in this case, an accurate one. In the world, especially the world of Autism, there is no “never” or “always.”

No thought, feeling, experience, belief or anything else is 100% consistent for all people that will read what you write. This is especially true when you hit hot button topics such as person first language or vaccines.

But it’s also true on even the most trivial and mundane of topics as well. You could write about something cute your child said or did and the moment you try to suggest that everyone would feel something, or no one would think a certain way…. you’ll find yourself being corrected.

It’s much easier to simply assume that absolutely nothing… and I mean nothing… is going to be a mold that everyone fits into. No treatments, no symptoms, no experiences, no thoughts… nothing.

Be careful to use “some” or even “most”… and when you do, add in “in my opinion” or “in my experience”… because, if you were to be honest, that is the truth. When you make assumptions for others, you do it based on what you know, in your life. So maybe, in your experience, most people would do or say something, but that doesn’t make it true of all people… right?

Also, keep in mind that people with Autism, especially children, are not all Aspergers or HFA (high functioning autism)… and likewise, don’t assume that all parents have children that are non verbal, unable to toilet train or other “more severe” effects. It’s easy to get caught up in our “own little world” but as we right, we have to ensure that other parents can either still relate to what we right or to understand what position it is that we’re writing from.

You’re not writing a book

This encompasses a bunch of tips… first of all, keep in mind that if you’re primary target audience consists of Autism parents, as mine does, chances are they don’t have a ton of time to devote to a blog post. In fact, yours is probably just one of several that they’ll be visiting today. So keep it to a reasonable length unless you’re writing something really really important.

You might not think you need chapters, since it’s not the size of a book, but that doesn’t mean that you shouldn’t section it out. Take this post as an example… I could have put all of these tips into bullet points and then plowed out a big wall of text to go over them, but sections just makes far more sense. A reader likely doesn’t have all the time in the world and will have to skim your posts quite a bit, so you might as well make the job easier for them.

Even if you don’t feel the need for sections, you should still keep in mind that as a blogger, you do have other tools at your disposal. Such as making important points bold and using italics sometimes as well never hurts. Most of all, if you do find yourself staring down a big wall of text, maybe you should try splitting up your paragraphs a bit more.

I like to split up thoughts into different paragraphs, even if they’re just sentences. If I read it out loud later and find that I take a breath and start a new train of thought, I break up the line so that visually, the reader will be able to do it naturally.

Other general blogging tips

Aside from the things I’ve mentioned, I also follow other general blogging tips that you will likely find on just about any blog about blogging… regular updates, lots of proof reading, writing about what I know… all that juicy goodness.

There’s 2 other things that I do that have been invaluable…

1. I tend to get ideas from other people, whether it be conversations, other blog posts, comments or just about anything… one idea I had was from an off topic remark on a home and garden show! When that happens, I quickly go to my blog and start a new post with the general idea of the post and save it to a draft. Having the WordPress mobile app on your phone or iPad is especially handy for this.

Chances are I don’t have time to write it just then and there… so a draft comes in really handy. This is especially handy when I find myself without ideas later… when my blog is needing a post, due to lack of updates, and my mind isn’t coming up with ideas, I can hit my drafts and find some good topics that I never got a chance to return too.

2. Sometimes as I write, I find that my blog post just isn’t turning out how I’d like or I’m simply not happy with how I’m wording things and know that it won’t be as well received as it should be.

When this happens, I hit the “Save Draft” button and call it a night. Not only have I found no harm in sleeping on it.. but most of the time, almost every time in fact, I find it hugely beneficial. When I return to it later and read it back to myself, it comes to me so much easier.

It may mean putting off a blog post a day, or maybe even a while if you just don’t get back to it for a bit… but that’s ok. It’s always there and it’s always usable.

For what it’s worth

Now, all of this I share knowing full well that it’s a take it or leave it post… I am not an expert, I have not been doing this for decades or anything. I don’t even have all that many readers, in comparison to many other blogs.

These are simply the methods that I use. They’ve served me well in the past.

If you have any more thoughts or tips that you use, please feel free to share in the comments. I’m always eager to learn and improve!

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Who has a right to talk about Autism?

By on September 17, 2011 in Autism

Recently, Rob from Lost and Tired wrote a blog post called “We’re on the same team….right?” which, the title pretty much speaks for itself. And I’ve often written about how it seems that no matter what you say, someone will object to it. Someone will be offended and someone will hate you for it.

Sadly, that’s just the reality of putting yourself out there. People have differing opinions, and the more readers you get, the more likely you are to find them.

However, more and more recently, I’ve been encountering people with Autism that feel that no one has a right to even mention Autism without having Autism themselves.

Who has right to talk about Autism?

no voiceIn the post I mentioned, one person commented, basically stating that if you don’t have Autism, you can’t talk about it. If you went to check it out, you saw my reply, which wasn’t very professional but as I wrote and wrote, I quickly realized that I couldn’t possibly fit all of my thoughts into one comment on a blog post.

The comment in question is this:

i have the exact same issue – to me – people who DO NOT have autism have absolutely NO RIGHT to OPEN THEIR MOUTH because they do not have it themselves – and do not know crap about what it is like to have the condition, the social rejection of it, and so much more that it makes my head spin. i have the exact same issue with people who go to college to teach special needs / special ed when they ARE NOT special needs themselves !!!

I don’t know if he was being serious or referring to how some people have been in the past, but I have encountered this sort of thing enough myself. So either way, I thought I’d write about it here.

While I do understand the sentiment, I do understand where this person is coming from, I also can’t help but think that this is extremely counter productive, hypocritical and even rude in a way. Now don’t take the last few parts and skip the rest, as I said.. I do understand where he is coming from and why he’d say it. I just want to be able to explain why that’s not a healthy stance to take.

Parents

First of all, to tell parents that they can’t speak for their children is likely to get you into a lot of trouble. Parents are very protective of their children, it’s an animal kingdom thing, it’s instinctual and no one had better tell a parent that they have no right to speak up or protect their child.

I want for my child to not be bullied, I want for people to accept my child for who he is, I want for my child to have a fair chance in school, work and life in general… I want the best possible life for my child.

To tell me that I can’t try to speak up for that, simply because he has Autism and I don’t, is a bit rude.

Am I to sit on my butt, let him be bullied at school, learn nothing and have no help…. and just hope for the best? Because I have no right to speak up?

Understanding and Acceptance

The whole goal of raising awareness is such that people that know nothing about Autism can not only understand it, but also come to accept the people that have it. Meaning more jobs, better services, less judgments.

But how can people be expected to do that if they have no right to ever discuss it? How can there ever be an understanding? If only autistics can understand it, then there’s no point in explaining it or raising awareness of it and if there’s no point in that, then there will never be acceptance.

True, most people will never truly understand and it’s also true that most people will never fully accept it… but is that really what is needed? Or is it good enough that people understand it enough to be more accepting, enough to stop judging those that are different… enough to stop bullying or denying them based on what they don’t have and may never fully understand?

No thanks, I don’t need your army to win the war

While I do rather hate the war analogy that some people make in reference to Autism (usually in reference to pharma companies), but in this case, I think it fits… in the war on awareness, understanding and acceptance.

I mean, think about it. At 1 in 110 (or so, depending on where you are), you have a relatively small portion of the population fighting for services, acceptance and a fair chance getting what others take for granted, such as less judgments, struggles, bullying and so forth.

But if you could recruit your parents, grandparents, other loved ones, friends, family, charities, teachers and others to help you, to fight with you…. wouldn’t you want that? In fact, wouldn’t that be exactly what it is that you’re fighting for?

Not for them to necessarily understand “exactly” what you’re going through but to support you, to back you up and to speak up to reach all of the people that you can’t reach yourself?

Neurodiversity

One time, a person with Autism suggested (more or less inquired really) if it would be a good idea to have two groups, one with Autism being self advocates and one for others, such as parents. Which, on the surface makes some sense as people with Autism feel as though they’re foreigners to us and we can’t possibly understand exactly what it means to have Autism….  however, I feel that it kind of defeats the purpose of neurodiversity.

The whole point is, I think, to bring different people, who think diffrently, together and be considered equals with differences. That we accept each other, without judgment, that neither is superior, neither is inferior… we’re simply the same but different, if that makes any sense.

So to split us up based on our differences, in an effort to unite us… seems counter productive.

Awareness for all

To achieve the goal of learning about Autism, in understanding how it affects people (quite differently I might add), how to reduce the bullying, judgments and struggles of people with Autism… we must all speak out.

Positive, supportive and unified. Working together toward a common goal.

If you have Autism, you have to remember… that special ed teacher that speaks up, that parent that fights for services, that charity that raises money… it’s for you. It may be misguided sometimes, it may be without a complete understanding and it may even be wrong in some cases, but it’s the best they can do, for you and for all with Autism… especially their loved ones.

We all have a right to want what is best for the ones we love. We all have a right to wish for less hunger, less war, less racism and all of the things that we, as humans should be over by now. That includes discrimination towards people with special needs.

Whether we are in war, starving or are disabled ourselves… we all have a right to speak, because if we don’t, we are nothing.

What I’m trying to say is…

While I do believe that we all have the right to fight for what we believe in, especially when loved ones are involved, what I’m really trying to say is…. please don’t shut us out.

Please let us help. Yes, we’ll falter along the way… we’re not perfect and, as is abundantly clear, we can’t possibly know what it’s truly like.. however, as parents and loved ones, we’re the closest thing you have for bridging the gap between two groups that really never should have been separate groups in the first place.

Don’t ask us to hope that our children will one day be able, willing and strong enough to fight for acceptance. It’s our greatest wish that one day, they will… but we can’t possibly put that burden on them… especially if we spend our time together on the sidelines. If we are unable to speak, that is what our children will learn from us. If we are unable to stand up for what we believe in, we can’t possibly force that responsibility on our children.

Autism is your world. My child is my world.. and my child has Autism.

Let us help our children. Let us help you. And forgive us our mistakes.

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Handheld devices and the benefits to children with autism

By on September 14, 2011 in Autism

I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.

So what is it about handheld devices that are so great for children with Autism? What are the downsides?

It’s all about control

handheld devicesHaving something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.

You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.

Doing what you love

My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.

When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.

Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.

Blocking out the world

The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.

If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.

Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.

These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.

Educational

Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.

And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.

There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.

If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!

The one big downside

There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.

The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.

I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.

But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.

It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.

We just had to endure the meltdowns for a while to get to this point.

Handheld devices such as books?

You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.

He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.

You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.

That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.

The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.

Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.

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