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

Trading in my sanity

By on July 13, 2012 in Autism

On the day I received my Aspergers diagnosis from the doctor, I was scheduled for appointments with a counselor and a psychiatrist. On the same day that my entire 35+ years finally started to make sense to me, I was put on the list to be fixed.

No one even asked me if I was broken.

The gate keepers for what is normal

It occurred to me that psychiatrists (and psychologists) have become the gate keepers of what society considers to be normal. They write up manuals with definitions of what is not normal and if you fit within those definitions… you’re diagnosed with something.

They’re also the people you talk to over and over again, sometimes for the rest of your life, in the epic quest to figure out how to make yourself normal. And you never will be normal until they tell you that you are.

Which brings me to my son Cameron. He’ll never be normal. He has PDD-NOS (which, next year, will no longer be called that and will simply be “Autism Spectrum Disorder”) and you have that for life. Because it’s one of the many definitions found in the psychiatrists manuals, he will always fit into that definition and thus be told that he’s not normal.

Growing up autistic

My son has a long life ahead of him with some of the most difficult years yet to come, high school.

The truly ironic part of high school is that when he gets bullied (I say when because the odds are, unfortunately, pretty good), he will be sent to a counsellor or a psychiatrist to help him cope with the anxiety, the depression and the feeling of being an outcast.

The bully? He’ll probably be punished in some form, like a detention or suspension but then will go right back to his bullying ways. Why?

Because bullying is normal.

Yeah, I said it. Bullies, while many are doing great work in trying to stop bullying, are still very much a fact of life. Especially in high school. When ours kids go off to high school, they know just as much as we do that there will be bullies there. Our kids just have to get through it.

“It’ll make them stronger.”
“It’ll toughen them up.”
“We did it. They can do it too.”
Right?

How has society gotten to the point where the bully is normal and the autistic kid that’s bullied is the one that needs fixing because he’s not normal?

It gets even worse as we get older. For example, here I am, getting my diagnosis and “fix me” appointments all the while other people I know have, what I consider to be, real issues. I won’t go into specifics but there are people I know that could use some help.

But they’re normal. They don’t have a diagnosis for anything. They just have issues. And everyone has issues, to some degree.

So they would never have someone booking appointments for them like I did.

insanityI’ll keep my insanity

Today’s world sees the word “insane” as meaning totally bonkers, crazy or all sorts of not making sense. The truth is, the definition actually is “In a state of mind that prevents normal perception, behavior, or social interaction.”

Sound familiar?

Granted, autism is far more than just “a state of mind” but still, you get the same effect. One could argue that something that “prevents” me from being “normal” classifies me as insane.

My son too.

Which makes me think of an old movie I once watched. The movie itself isn’t very memorable to me but one line in it really stuck with me.

Sane and insane could easily switch places. If the insane were to become the majority, you would find ourself locked in a padded cell wondering what happened to the world.

It always intrigued me, even sort of made me smile. Because it’s quite the interesting notion to think that “normal” is really just what the majority of people are doing.

If most people do this, and you do that, you’re not normal. But tomorrow, if most people did that and you started doing this… you were still not normal.

There’ll likely never be more autistic people than non-autistic people in the world but at 1 in 88 being the most recent numbers out of the US, it still makes me think; if more people had autism, would being autistic be considered normal?

That makes me smile.

I’ll go see the counselor and the psychiatrist. My son will likely have to some day as well. And we’ll do our best to be the best that we can be.

But insanity is only a 51% majority away from being considered sanity.

Normal is just a number away.

You can keep it

I love my son how he is. I love my son for who he is.

And now that my life makes more sense, I love who I am too.

Since getting the diagnosis, I feel like I traded in my sanity. I was instantly put onto the “not normal” radar and had appointments made for me.

But I realize now that having autism doesn’t make you abnormal. It just makes you a different kind of normal. A kind of normal that could easily switch places, if the numbers were right.

If normal means changing my son into someone he’s not, you can keep it.

Comments { 7 }

Dear 50 cent, I hate what you said, but thank you

By on July 5, 2012 in Autism

On Twitter, where these things always seem to happen, a follower lashed out at 50 Cent (kind of tongue in cheek-like), insisting that he release his album early. In an attempt to by funny, 50 Cent tweeted back something that put the entire autism community into battle stations.

And I say, thank you.

50 Cent

50 Cent

What he said

First, let me show you what he said. These tweets have been removed from his stream but he has yet, at the time of this writing, to apologize.

“yeah i just saw your picture fool you look autistic”

“i dont want no special ed kids on my time line follow some body else”

“just kidding about da special ed kids man, i was in special ed day said i had anger issues lol”

My reaction

At first, I was a bit upset but mostly disappointed. I am not exactly his biggest fan although I do like his songs that I hear on the radio. Nor am I well versed in his life but I have heard that he’s more intelligent than most would give him credit for and that he is quite the philanthropist.

Both of these things greatly contradict his remarks and would have me questioning if what I had heard was true.

Still though, I took to Twitter myself and Facebook and Google+ and shared what he had said. I tacked on “Not cool man. Not cool.” to show my disapproval but reserved any emotional response for later… after I had time to think about it.

Holly Robinson PeeteHolly R. Peete

Probably the best response and the one that is making it’s rounds around the Hollywood and news media scene is the open letter from Holly R. Peete, the celebrity mother of an autistic child.

You can read her response here. I suggest you do now if you haven’t already: Dear 50 Cent…

Her letter made a lot of people rejoice, repost and even cry. It prompted a wave of tweets from parents, all sharing their child’s pictures with a single unified message: “This is what autistic looks like.”

Her tweet, with the link to her response, has over 1000 retweets and that’s not counting all of the other people that have tweeted the link. My own tweet to it has dozens of retweets as well.

I can honestly say that I’ve never seen that before. It is amazing!

Wait, why thank you?

So why is it that I am saying thank you to a guy that said something so hurtful? Why am I saying thank you when so many people are so mad that they wish they could meet him face to face to yell at him in person for what he said?

Well, for two reasons really.

Number 1 is that he, and others like him who do these things, are able to unite the autism community, even if for just a moment. All parents, experts, educators, autistics and everyone else associated with the community all felt the same thing at the same time. And as improbable as it seems sometimes, the entire community actually is all saying the same thing… shame on you 50 Cent.

We’re all mad. We’re all waiting for an apology. We’re all disgusted for the same reason.

Oh, it’s ugly, but it’s unity. I’d rather it could come under different circumstances but there it is.

Number 2 is that it shows us just how much work we really have left to do. If raising awareness was step 1, then we’re only now tipping our toes into step 2… and there’s still 8 more steps to go.

The world has become so familiar with autism that it’s now a commonplace enough word to sling around carelessly, just as the r-word has been in the past. And that’s being beaten back, thanks to a lot of hard work from a lot of great people. But it’s hard work all the same.

If celebrity philanthropists can sling around “autistic” as an insult, in an attempt to be funny, then hard work is quite the understatement. But it does mean that people are aware. Now we have to inform.

And despite the lack of apology… I think the backlash and recent media attention (thanks to Holly R. Peete’s great response) is a great step forward towards informing people.

A lot of people are reading and watching and listening to that media. People who knew less about autism than 50 Cent apparently did. And they’re getting an ear full.

Just to be clear

I don’t condone what he said. I don’t like what he said. But it was said and I was mad, for a moment.

Still though, it’s an eye opener. A rude one but an eye opener. And despite the very negative beginning, I think this little episode is actually doing a lot of good.

With a united community and with great people like Holly R. Peete standing up to those who make statements like that, we’re well on our way to ensuring that these little episodes don’t happen again. Or at the very least, rarely.

And I welcome that. A lot of people just found out how very wrong it is to try to use “autistic” as an insult… whether they’re just trying to be funny or not.

That makes me smile. The entire autism community, for a moment, makes me smile.

I really hope he apologizes. That would really put a great little wrap up on this whole ordeal.

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Autism – The (not so) Invisible Disability

By on July 4, 2012 in Autism

Autism is sometimes referred to as “The Invisible Disability” because it can be difficult to spot, especially if you are unaware of the characteristics that define autism.

If you saw a group of kids standing in a group, could you pick the one that is autistic? What about if they were walking around the halls at school? How about if they were running and playing a game or a sport?

Chances are, if you know autism well, you know that it’s usually far easier to spot an autistic when they are exerting themselves physically, like running and playing.

I can’t help but feel so very bad for Cameron when I see him run, his arms flailing about, his tongue sticking out, his legs all wobbly… he really has very little control over his own body. He sure does try hard though! I think that’s why he’s that much more disappointed when others are faster than him.

Today, while out for a walk in the woods, we put our two boys off on a race. Tyler, who is 4.5 years old and Cameron, who is just about to turn 7.

Normally, you’d expect a 7 year old to beat a 4 year old in a foot race but in this case, neither my wife nor myself were surprised when Tyler was able to get to the finish line first.

And it’s not that we’re disappointed. We’re not. All we ask is that they try. If they give it their best, we’re happy. But Cameron doesn’t see it that way.

To him, he doesn’t understand why he’s not as fast. He doesn’t understand what it is that’s making him slower. He just thinks he’s stupid. He just thinks he’s “the worst kid ever.”

It really hurts because I don’t know how to help with that. I mean, yes, you tell him to keep trying and that practice will help him to get better and faster.

But what kid believes that when they feel completely defeated?

Perhaps it’s best if I just show you. This is the video of my boys having a race from their mother, to me and back again.

I do believe though, that this is not a life sentence. Autism itself is but like all other characteristics, like all strengths and weaknesses, this can be worked on, improved and even perfected.

Given time, dedication and persistence, Cameron can become a great runner. He can even become the fastest, if he worked hard enough at it.

But as I said before, all I would ever ask of him is that he try. And that is what I want most for him. For both of my boys.

To try.

So no, it’s not an invisible disability. At least, not for every person that has autism. Sometimes it is very much visible and makes for a very large hurdle.

My boy gets down on himself because of this. He doesn’t understand. But I do. It’s not invisible to me.

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The life I once had

By on June 26, 2012 in Autism

It’s not something I talk about very much. It’s really quite boring. But even more than that, it’s really quite depressing. It’s negative. It’s not the me that most of you have come to know now, that is if you have been reading the things I write before this one. If this is the first of mine that you read, I am sorry. But please do stick it out because there is a point to my telling you this.

loneliness10 years ago

When I was 26, I lived in one of, if not the, most beautiful city on Earth, Vancouver BC. I really loved it there. I had an apartment on Beach Ave, over looking the ocean. My living room wall was glass from top to ceiling. Just me, my computer and the most beautiful sight you’ve ever seen.

And I was miserable.

I didn’t know it back then but I have Asperger’s. Back then, I was just… me. Miserable, depressed and lonely. Which is funny to think about because I did have friends and family that lived close by. But I was so very lonely. I would work at my computer, making websites for people. I made my own hours, I made my own money. I had no boss. I had no place to be.

My schedule would shift because every single day I’d go to bed one or two hours later than I had the day before. I say day, not night, because when you continue this process for several years, you go from staying up all day to staying up all night and back again.

I had accomplished my goals. I worked for myself. I could afford a great apartment. I did as I pleased.

I wanted to kill myself.

My darkest day

It never really occurred to me just what it was I was telling her or how much it must have been hurting her or just how stupid it was of me to be saying it but, without a doubt, the worst it had ever gotten was when I told my mother, while bawling my eyes out, that I was so very sorry because she would never get to be a grandmother.

Me, being her only child, feeling completely defeated and worthless in life, had fully accepted that no one would ever love me and that I most certainly would never get to a point in life where I would ever have a family.

I couldn’t be the person that people wanted me to be. I felt a total fraud every time I walked out the door. I told witty stories, quick one liners and would often be the “life of the party” with those that knew me but it was never right. It was never me.

I loved who I was and what I had accomplished but hated myself all the same.

I even sought out help in the form of a psychiatrist but it proved to be pointless. I don’t know if it’s because of my Asperger’s or just watching far too many drama movies and television shows but it was as if I could see each line he said before he said it. I knew the points he would be trying to make, I knew the directions he would try to take. And each and every time I would dismiss and ignore. It never pertained to me. It never pertained to my problem. It was always stuff that made sense for other people but not for me.

And so I resigned myself to a life of solitude. I told my mother that our family line would end with me. Her disappointment.

What a thing to tell a mother.

10 years later

So here I am now, 36 years old and feeling like my past was only a moment ago and a whole other life time ago at the same time.

Today I have a wife, two little boys, a dog and a cat. I have no money, no free time and a very strict schedule. I live in a crappy apartment with no view to anything in a town that I don’t want to be in.

I’m the happiest I’ve ever been.

So what happened? Well, to be honest, it’s not really the details that matter. What matters is that I was there for them to happen.

My wife, as it turned out, was one of my oldest friends. I had known her for a very long time. One day, at the right moment, in the right place, something happened. And here we are.

Thing is, if I had had my way, at that time, I’d have still been at my computer, in my Beach Ave apartment, being miserable. That moment would have never happened.

A moment in time was all it took. I didn’t know when or where, I was most certainly convinced it would never exist, but it did. And now my life is not just different from what it was, it’s nearly the opposite.

I have no friends now and my family is hundreds of miles away but I never feel lonely. My wife and kids, they were what I was missing. They have filled that hole in my heart.

I have no money or time anymore but at the same time, my kids always have food, the latest games and toys, clothing on their backs. You can have all the time and money in the world but they have no value at all unless you have a purpose for them.

Your future you is waiting for you

It sounds corny and I’m not making you a guarantee but if you believe it and if you work for it and you make the effort to simply be there, that moment can happen to anyone.

Many autistics fear their own future. Will it be more of the same? Bullying in school? Bouncing around jobs if there are any jobs? Feelings of anxiety and loneliness?

Parents also have these fears for their children. Especially if their children are non-verbal or particularly challenged, such as having other associated conditions like blindness or epilepsy.

I am not trying to throw positivity down your throat. I’m not Anthony Robbins. But I can tell you how I see things based on my own experiences.

If I had stayed at home, if I had moped for one more minute, if I had simply believed myself worthless at that one key moment instead of… what ever it is that I felt… I would probably still be on my own. If was I still alive at all by now.

I didn’t know it then but autism was confining me to that computer chair. It was making each outing a torturous affair. It made me disregard or even dislike the friendships I had even though I loved my friends. It made me hate myself.

At the time, I thought I was just a loser. Just the oddball out that was meant to be alone. A person that was meant to be miserable.

But I did go out. I did keep that friendship going after so many years, even though that was largely due to her, insisting on keeping in contact even when I would “forget” to reach out.

I look back now wishing I could travel in time so that I could tell myself just one thing; “Endure this. It’s going to really suck and you’re going to really hate it but endure it. Because no matter how impossible it seems, like it could never happen to you… it can. I am your future and your future is waiting for you.”

To be honest, I probably wouldn’t have listened, not even to myself. That’s how miserable I was. But that kind of hope can make all the difference.

That kind of hope is what is missing for a lot of young people today. Especially those with autism who feel like there is just no place for them in this world.

To those waiting for their moment

My son has two advantages, the way I see it. One is that he knows he has autism so he’ll know the reason for feeling how he feels. Perhaps he’ll even know the coping mechanisms to not let it get in his way. It won’t just be a random feeling of despair and loneliness. Second, he has me. And I’ll always be there to tell him that his future self is waiting for him. That he can and will be happy if he endures long enough.

But I’m not a time traveler nor am I a fortune teller. So I can’t make any promises on what the future will hold. I can only tell you what I have experienced and what I believe.

What I believe is that there is nothing that can ruin your life unless you let it. Not autism nor anything else. Granted, it can make it one hell of a whopping huge challenge but nothing can stop you from loving life and being happy.

You could argue that I was lucky, to have had that one moment that turned things around for me but that’s kind of the point I’m trying to make.

I told you that I felt lonely even amongst my friends. I told you that each outing was torturous. But I still went out. I still had friends. I still left my little ocean side apartment because if I didn’t… there never would have been a moment. I would not be here, right now, believing what I believe and sharing it with you.

Even though it was that one moment that I can pin point, looking back, that changed everything… it wasn’t in that instant that I suddenly switched from miserable to happy.

It was that moment that things turned around but it took time. A lot of time.

My point is, it wasn’t just luck. I wasn’t lucky. I was anything but lucky at that point in my life. But I was there.

You need to be there too. When every part of you tells you not to be, when every part of you tells you it won’t happen… be there anyway.

If you feel like an outsider, if you feel completely alone, if you have autism too… you know just how hard that really is.

But your future self is counting on you. Your future self is waiting for you.

Be there.

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So it’s Victim Mom vs Warrior Mom now? Here is some perspective

By on June 21, 2012 in Autism

 

Jenny Mccarthy Victim

Sending all the wrong messages

Jenny McCarthy, more famous in the autism community for her on again/off again autistic son and her war on vaccines than her actual acting career, has made some very bold statements during the latest Autism One conference where she likened some moms to choosing to be victims and enjoying the “oh woe is me” victim role.

For some light reading on the subject:

Jenny McCarthy: Autism Moms “Fall in the the victim role…and they are loving it”
Words Matter
A letter to @JennyMcCarthy

There are a lot more posts and articles out there but I don’t want to list every single blog/article in the autism community because everyone has written about this.

I was going to let this go by as just something silly, nonsensical or, more or less, stupid.

But, upon thinking about it more today, I’ve come to the conclusion that I should say something. Something that I feel is imortant.

Perspective

To recount what it was that she said, I’m going to borrow from the Left Brain/Right Brain post (the first article I listed above):

As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn’t want anything to do with what we were talking about. They slumped into a corner and had a “woe is me” attitude. I decided to eavesdrop on both conversations.

The “woe is me” moms were talking about how they didn’t get to shop or go to the beach with their friends anymore, and the “I’ll try anything if it will help my kid recover” moms were trading success stories about the latest treatments.

And, later…

“My other theory was that they enjoyed the victim role. I know that might sound mean, but I’m sure you’ve met people who are constantly having shit go wrong in their life. They complain and play the “don’t you feel sorry for me” game.

Now, for the most part, the autism community got up in arms over this in one of two ways… either being offended as she had called them victims, or defending her as they felt that she was making a great point.

My stance is, it’s all a matter of perspective. Now, hear me out.

This is just an example, but where’s the dads? How come it’s only moms who get a label? If anyone should be offended, it’s us dads that work every bit as hard as the victims and warriors combined and we’re forgotten about completely.

See? Perspective.

Anyway, more to the point, I’d like to offer a few alternative perspectives.

The two groups

The two groups that she alludes to were contained within one larger group of moms discussing alternative treatments. I can only assume, and this is just me, that if not all, then most of those moms were in the anti-vaccine camp… believing that vaccines, or other toxins, had caused their child’s autism in the first place.

This already excludes a lot of moms in the autism community. The majority I’d say, since most autism moms do not believe the vaccine theory. This means that she’s casting a divide within an already divided group.

So to put it mathematically, in hypothesis only and my numbers will be way off, if the split is 75/25 for moms who don’t believe the vaccine theory and those who do… then she’s dividing up the 25 into two groups. If 50/50 then it would be 13/12 or something like that.

It’s still very wrong to label those moms and cast judgement, I’m just saying that maybe she’s not talking about the moms that you think she’s talking about. You know, the moms that have no qualms with the toxins of the world.

The Accepting Mom

The prevalent perspective is that Ms. McCarthy is talking about moms that have come to accept their child as they are.. with or without autism. That those moms do not seek out chelation or force feed their children bleach and therefore would rather just be the victim.

If this is the perspective of choice, then you must realize that it’s how she sees things. It’s her own perspective.

I realize that this won’t be popular among those who like Jenny McCarthy or feel how she feels but remember, this is only to illustrate a different perspective.

See, she may consider a mom that does not try things like giving their child a bleach enema as just playing the victim but I tend to think of that mom as simply having common sense enough to not try something obviously dangerous, and stupid.

She may consider a mom that accepts their child for who they are as enjoying the victim role so much that they give up rather than try tons of pointless and costly treatments but I tend to think that not seeing their children as damaged goods in the first place, and having unconditional love trumps all titles that one can fling at them.

She may consider a mom that talks about her struggles in raising a child with autism as a person that basks in the feeling of being the helpless victim but I tend to see that mom as someone that I can relate to, get advice from, share experiences with and understand.

She may see a “warrior mom” as a woman that battles “big pharma” and government agencies. That’s fine. To me, when I see a mom crying about how the evil empires broke their child, how much money they spend on treatments that put their children in danger because they are so desperate to cure them… that’s when I see a victim. In fact, I hear it in their chants: “big pharma is making money while making our children sick. We’re the victims!”

She may see a mother that never stops fighting for their child as a warrior mom but I tend to think that ALL MOTHERS NEVER STOP FIGHTING FOR THEIR CHILD. If they do… they’re not really their mother. Moms do not give up. Period.

She may see compassion, positivity, acceptance, understanding and love as being the victim. Then I say, please call me a victim too.

If seeing my child as perfect makes me a victim and seeing my child as broken, in need of being cured from the damage done by evil doctors makes me a warrior… I’ll take the victim title, thank you.

That’s just my perspective. And opinions are born out of perspectives. They do not make them fact.

Her opinions, based on her perspective, should remain her own.

She’s entitled to them.

As I am entitled to mine.

Signed,

Victim and proud.

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