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

Dear HP, I have a proposal for you

By on September 2, 2011 in Autism

I have an idea for HP and their TouchPads, but first…

First, a bit of back story

HP-Touchpad-TabletRecently, HP found that their sales of the TouchPad tablet were less than satisfactory and decided to scrap the whole project. Not just the tablets, but their entire computer making efforts… computers, tablets.. the works. To prove their point, they dropped the price of the TouchPad from $399 to just $99 to get them out of the stores.

Not only did they go out of the stores, they left burning trails behind them (you know, because they left so fast). People scrambled like mad to get themselves some discount technology.

As a result of that, plus, some rumours of a need to use up remaining inventory and parts and such… HP announced just a couple weeks later that they’d make some more TouchPads for sale in the last part of this year.

My Proposition

One would assume that HP is going to be selling these for $399, or at the very least, higher than $99. They can’t possibly be intending to run all this manufacturing to churn out tablets that will make less money than it costs to make.

If that’s true, and keep in mind, I have no background in business or marketing or anything but, wouldn’t that be some really bad business thinking? To take a tablet that couldn’t sell, drop the price insanely low so that the people that did want one got it… and then to put more out there right back at the same price that they were before and didn’t sell?

My idea is this… donate them to special needs programs/schools. Or at the very least, sell it to them at a great discount.

Did you know that Apple used to market their computers to schools? They even donated (and still do) old computers that were used or no longer current to schools that could use them.

Not only is it great for public image, not only is it great for the company (donations are always beneficial) but when you think about it, how brilliant is it?

Well, think about all of those students using those machines for several years… when they need something similar at home, what are they going to use? When they graduate and need to use a computer.. what will they want to use?

Granted, that’s not really the focus for HP since WebOS probably won’t be around much longer nor will HP’s computer/tablet devices. But still, the idea is sound.

Special Needs schools, teachers and students need your help

Special needs schools have very little funding… certainly less than colleges. There is simply never enough money to get all of the supplies they need, sometimes they even can’t take as many children as they’d like.

And if there’s anything we’ve learned since the release of the iPad, special needs children can work miracles on a tablet!

They learn quicker, more easily and generally have more fun doing it when they have a device that they can touch and interact with.

I believe the number of apps on the iPad makes it the best choice but not the only choice. Any tablet would work.

If a school was given tablets, they could even hire developers to make what they need… since they could divert some funds from other supplies which would no longer be needed due to the tablets.

Please consider it

You’d be helping the special needs, helping the future and best of all, putting these devices to the best possible use they could ever have.

Don’t put them on a shelf where they’ll sit until you’re forced to drop the price again.

I’m not asking for me, I don’t need one. I’m asking for the community, for many communities… for the future.

Do something really great with this. It’s your moment to really shine.

 

If you work at or are involved with HP, thank you for reading.
If not, can you help me in getting this message to HP? I’d like for them to at least consider it. Thank you! 

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Does person first language indicate a lack of acceptance?

By on September 2, 2011 in Autism

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.”

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism”

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

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What is Autism Advocacy to you?

By on August 31, 2011 in Autism

You would think that a question, such as “what is autism advocacy to you?”, would be pretty straight forward. However, if you ask a few thousand people that question, you’ll very quickly realize that it’s most definitely not straight forward.

Advocate

verb
1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

noun
2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of peace.
3. a person who pleads for or in behalf of another; intercessor.
4. a person who pleads the cause of another in a court of law.

I think everyone can agree that, even though there is an official definition, there is no one way to be an advocate.

Autism Advocacy

So I asked what Autism Advocacy is to people on various social networks and thought I’d share some of the responses with you:

#empowerment #support to let families affected by #Autism , #ASD , & #FragileX know ‘they are not alone’

Active support that raises awareness, results in change & aid 2 individuals & families.

For me it means donating money to autism research, doing walks for autism, striking up a conversation about it with strangers in the checkout line, at the park or wherever. Online, it means posting articles, videos, blogs etc talking about different aspects of the disorder. I think it is a combination of these things, as well as being a “voice” for those people affected by it.

Raising awareness of the breadth and scale of autism and reminding people it is a life long condition. I certainly have got into the habit of posting articles / starting conversations about issues on autism.

Autism Advocacy on a parental level is educating the awareness of the challenges you face everyday with your child who is diagnosed. Especially with your community leaders, your local government, and advocating for change to enhance and strengthen the bonds of Autism Families. Most families are not able to financially support the intervention that is provided through health insurance, Fundraising is important aspect of providing those needs to your family. Structure is vital for children with Autism.

I even got some responses such as this one:

Unfortunately, mostly very loud parents.

Which may bring you to feel upset at first but I think when you really think about it and think back to some of the other parents you may have come across in your life, this actually may be true… maybe not “mostly” but certainly some do qualify.

You can quickly see just how varied the answers are. They’re all advocates but they look at the tasks, the targets and those they’re advocating for quite differently.

Who are some good Autism Advocates?

I also asked who people felt are good autism advocates. Many people named Temple Grandin, some people mentioned people on Twitter, such as @Diaryofamom, @shannonrosa, @CorinaBecker, @AutismWomen and @LauraBShumaker.

The response from some parents where that they, themselves, were the best Autism Advocates. Why?

Well, as the parent of a child with Autism, no one could advocate for their child better than they could.

But this brings us back to the first question, what is Autism Advocacy?

In a rather amazing bit of good timing, Jim (@GingerHeadDad) wrote this just yesterday: http://gingerheaddad.wordpress.com/2011/08/30/what-is-wrong-with-just-being-a-parent/

I had written several replies in his comments but never hit submit on any of them. I felt I wasn’t expressing myself clearly, I felt I wasn’t doing his post justice. I felt… I felt that the questions that I had been asking essentially are the response to his post that I am looking for. So I decided to write up a blog post of my own in response and share that in his comments….  which brings me to this:

Autism Advocacy – As Defined By Stuart Duncan

Autism Advocacy is the speaking up about, speaking on behalf of, speaking in support of, speaking in defiance of and speaking in defense of yourself, a loved one, all people with Autism or for Autism in general whether you are speaking to yourself, one other individual, a group of individuals or the entire world.

What does that mean?

It means that it doesn’t matter how much money you’ve donated, if you’ve created laws, written books, built buildings or if you’ve informed a family member, had a teacher recognize a special situation involving your child, had an impromptu discussion with a stranger or even if you’ve simply come to self realizations all on your own…. you are an Autism Advocate.

Never feel like you aren’t doing enough simply because your advocacy efforts are focused on those you love.

That change you made in a teacher, that stranger you talked to, that family member that has a better understanding… they’ll carry that forward to the next time they encounter someone with Autism and it will affect them. You will have made a difference.

Always accept that you feel you could do more but never let yourself feel like you haven’t done enough.

We all see advocacy differently. We all see Autism differently. We all have a different view that leads us to different goals.

It’s not about the number of people that hear you. It’s not about the size of the changes you can inspire in the world.

Big or small, loud or quiet, we are all advocates.

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To the world you may be just one person, but to one person you may be the world. ~ Brandi Snyder

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Autism Study of The Month: Older Fathers Face Greater Risk of Having Child With Autism

By on August 30, 2011 in Autism Study of the Month

dna

Increased de novo copy number variants in the offspring of older males

Source: http://www.nature.com/tp/journal/v1/n8/pdf/tp201130a.pdf

Abstract

The offspring of older fathers have an increased risk of neurodevelopmental disorders, such as schizophrenia and autism. In light of the evidence implicating copy number variants (CNVs) with schizophrenia and autism, we used a mouse model to explore the hypothesis that the offspring of older males have an increased risk of de novo CNVs. C57BL/6J sires that were 3- and 12–16-months old were mated with 3-month-old dams to create control offspring and offspring of old sires, respectively. Applying genome-wide microarray screening technology, 7 distinct CNVs were identified in a set of 12 offspring and their parents. Competitive quantitative PCR confirmed these CNVs in the original set and also established their frequency in an independent set of 77 offspring and their parents. On the basis of the combined samples, six de novo CNVs were detected in the offspring of older sires, whereas none were detected in the control group. Two of the CNVs were associated with behavioral and/or neuroanatomical phenotypic features. One of the de novo CNVs involvedAuts2 (autism susceptibility candidate 2), and other CNVs included genes linked to schizophrenia, autism and brain development. This is the first experimental demonstration that the offspring of older males have an increased risk of de novo CNVs. Our results support the hypothesis that the offspring of older fathers have an increased risk of neurodevelopmental disorders such as schizophrenia and autism by generation of de novo CNVs in the male germline.

Translation

To begin with, “de novo” is latin, it means new, or “in the beginning”.

Also, CNVs or “Copy Number Variants” refers to the strands of DNA, the stuff that makes us us.  Sometimes there are “variants” which puts things out of sync, thus adding to “anomalies” or “errors” in our genetic code. Sometimes something is copied when it shouldn’t be, or is missing when it should be there.

So to translate “de novo copy number variants“, what they are talking about is new anomalies in a person’s DNA.

Traditionally, DNA is largely inherited from the parents.. a person will inherit eye color, hair color, skin color and more from their parents. This is present in the DNA.

However, there is also new elements to the DNA which is not inherited… these are “de novo“.

Ok so now that we know that, to continue, this article is discussing the likelihood that Autism could occur despite the family history showing no signs of Autism in the past.

To accomplish this, they took mice of varying ages, 3 months and 12-16 months and compared their offspring.

They found that there were 7 different CNVs among the offspring where it was already present in previous generations, meaning it was inherited.

However, they also found 6 new CNVs among the offspring that had older parents… and 0 new CNVs among the parents of the younger mice.

This would indicate that brand new CNVs can arise if the father is older… creating a new line of Autistic family future possibilities.

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.

First of all, these are mice. Mice do not have Autism. However, one can’t dismiss the findings especially in light of other recent findings in genetics and DNA, in terms of Autism.

If true, this could help to explain why a child could have Autism despite being unable to find any history of it in the family tree.

Not all CNVs are harmful which means that while there could have been differences, and sometimes those differences are associated with Autism or even Schizophrenia, there’s no evidence that those differences would definitively cause Autism. Some may, some may not.

Like most studies, while they did find some CNVs in some mice, not all of the offspring showed these results. Meaning that just because you’re an older father, there’s no reason to think that your child will definitely be born with Autism.

 

“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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Starting the School Year When Your Child Has Autism

By on August 29, 2011 in Autism

This post is assuming that your child has Aspergers or HFA level symptoms and thus, capable and “ready” for school.

The whole school process is a struggle enough. Parents have so much to get ready…. supplies, paperwork, transportation and more. Then you have the child who’s going to be heading out into the world, for the first time on their own, to fend for themselves.

It’s nerve wracking. It’s scary. It’s tiring.

On top of all of that, your child has Autism? This is a recipe for disaster if not prepared for in advance.

I don’t have all the answers, I’m just a guy trying to get my own kids through it but I can share with you some of the things that we’ve done. Maybe some of it will be new to you, maybe you’ll have much better ideas than I do (and please do share them in the comments!)

schoolFirst Year

If this is your child’s first year of school, you’re going to have to do a lot of preparation in advance. This doesn’t start a few months before or even a year before… this should start as early as possible.

  • seated learning time (counting, alphabet, shapes)
  • scheduled snacks/lunches as per strict routine
  • scheduled play time
  • play with others. Whether that means playing “next to” another child or what have you.
  • play groups would be ideal. Learning how to cope in a room with other children

Obviously this isn’t going to be fundamental or even strict for the first little while but as you approach that all important first day of school, it should become more and more a part of the regular routine.

A good idea to get your child ready is to visit the school and the teacher in advance and find out what some of the routines will be.
Also, listen for keywords because they may refer to certain things differently than you would at home.
For example, my son’s school has “nutrition breaks” rather than “lunch”

As part of your build up routine, have your child get up at the same time every day, get dressed, teeth brushed, breakfast in and everything before 8am or 8:30am.

I know that most of those things are a challenge on a good day but the more it becomes a part of the routine, the better it will go over time. It’s far better to struggle BEFORE school than when school actually does start.

Back to School

So your child has been to school already and is just finishing their summer vacation. That’s fine, a lot of the same rules will apply except that your child is likely a bit older which may mean having to rebuild some routines.

For example, your child’s bed time may have been pushed a little later since the sun doesn’t go down as early. Your child may even be waking up later as a result.

Going out to the park, swimming, sitting around and playing video games…. all of these things disrupt the routine and even though they know full well what to expect at school, they may still find it a huge challenge to cope.

About 2 weeks before going back to school, start to ease their bedtime back to it’s regular time. Not at all once but a bit by bit.

The week before school, go back to your school routine. Waking up at a certain time, going to bed at bed time… and everything else becomes school mode.

Get them dressed, fed, cleaned and even pack their lunches in the morning.

To make it fun, use that packed lunch as an excuse for some last chance trips to the park or the lake or what have you. Let them do their lunches as they would at school… meaning, no help (or not much) from you.

This helps them to get back into school mode.

The Best Thing You Can Do Is Not Be A Parent

I know, you just want to enjoy every last minute and make them as happy as possible for every last minute of freedom they have.

But that does very little to prepare them for what is to come.

And there’s no saying that the preparation can’t be fun. You just have to be creative. As I said earlier, go on picnics… give them rewards for a job well done.

Preparation is key, I’ve found. My wife is a master at it and really, this post is just notes as I tag along with her awesome planning.

The only way you can discover, recognize and avoid as many potential pitfalls and issues as possible in advance is to start before the fact. Treat the week before (or even 2 weeks before) as if they were school days so that you can hash out any problems or find out what will become problems before you have to deal with it for real.

That way, failed mornings don’t jeopardize an actual school day. It’s far better that you try to recover at home, where your child is comfortable, than at school where they really don’t want to be.

I’m sure your child’s teacher would appreciate it!

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