About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

Autism from a Father’s Point of View celebrates 1000 Ausome Things #AutismPositivity2013

autismpositivity2013As part of the Autism Positivity flash blog event, we bloggers are encouraged to list 1000 positive aspects about autism to combat the waves and waves of negativity through out the media and such… but instead of just 1000, I thought it would be better to aim higher. How about 1,000,000? 10,000,000? How about 140,000,000?

Because if the latest estimates are to be believed from the CDC, which puts autism near 1 in 50 school children, then out of 7,000,000,000 on the planet, we have a lot to be positive about.

Every single child is priceless. There is no limit to a chlid’s value and that value certainly does not diminish because of any disorder, disability or otherwise “defect” that we can possibly think they may have. A child is a child. And you can’t place a value on a child. And every single one of those children has a positive influence on this world.

With love, with care and with a warm smile from every new face they see, their life will continue to grow in a positive way.

It doesn’t matter if a child can’t speak or play in sports or is unable to learn the things we want them to learn… they still deserve the love and respect that any child would.

Even when we think of the positives with children, we think about what they teach us, open our eyes to, what they are able to discover and do for themselves and how they impact not just our own world but the entire world and it occurs to me that, these are things. Abstract, sure, but still things. With or without these things, the child is still a beautiful, unique and priceless child.

I don’t need to recognize that my child has made me a better parent to be positive. I don’t need to be aware of how much my child has and will continue to over come in his life to be positive. I really don’t need anything or for there to be anything happening.

All I need, all I will ever need are my children. So long as I have them, I have everything I need in the world to be positive about. What they do or don’t do, teach me or don’t teach me… these are instances in time. They are things in their own right to be positive about. But they’re not what I need to be positive.

When I close my eyes and I think about it, I recognize that my child isn’t 1 in 50. My child is 1 in 7,000,000,000.

And that, my friend, is something worth celebrating.

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Somewhere along the way, I became a parent. This is how I know it’s true.

Somewhere along the way I became a parent. I’m not entirely sure why but all of a sudden, it just hit me like a ton of bricks.

Was it when my first child was born? No, I don’t think so. At that point, I became a dad, sure. But for the most part, waking up to bring the baby to his mom for feedingss and changing some diapers really didn’t make me a real parent. I was responsible for this little, very much dependent and fragile life but that wasn’t it.

Perhaps it was I had to start putting my name in the “parent or guardian” forms at schools and hospitals… I remember looking at those forms and thinking to myself, I can’t believe my name goes here. But even that wasn’t really it. That was just paperwork.

I know it wasn’t when my son was diagnosed with autism because that made me feel like anything but a parent. I was feeling more lost and scared than most times in my life that I could remember. I got over it quickly though as I learned more and my son impressed me all along the way but still, that wasn’t it.

I really thought the moment that I became a parent was when my boys would do something wrong and I’d open my mouth only to hear words that I thought only my mother would ever say. I was suddenly watching my own childhood from a totally different perspective. I had, in effect, put myself in my mothers shoes and at that point, I thought to myself, “wow, I must really be a parent now”. That was a very good start but that wasn’t it either. That was me playing the role, I think. It slapped the thought across my face but it still hadn’t sunk in quite yet I think.

Dead: 12-year old Alex Swigart saved his dad's life after waking he and his girlfriend up when their mobile home caught fire

Dead: 12-year old Alex Swigart saved his dad’s life after waking he and his girlfriend up when their mobile home caught fire

Then, as I became more involved in the autism community and started getting more and more information fed to me by an ever evolving social media, I started to come across stories like this one, where a 12 year old boy with autism saved his family, only to die in the fire himself. It’s not the story itself that got to me, although it is tragic. It’s one sentence in the story, that made my heart sink. It was this:

Fighting back tears he said: ‘I yelled inside the window and I heard him call to me, “Daddy I can’t breathe!”‘

I didn’t read the rest of the article beyond that until the next day. I couldn’t. All I could think about what how hard that must have been, to hear his child… the most precious and important thing in his life ever, calling out to him, in pain, and being powerless to do anything about it.

I’ve read stories like this before. It never hurt me like this.

It’s been happening a lot lately too. Stories that would have saddened me before but never felt like a knife in my heart like it does too, are crossing my path at an ever increasing rate.

Loss: Autistic 6-year-old Dylan Hockley died in the arms of his special education teacher in another classroom; his parents have set up a memorial fund of their own to help children with autism and special needs

Loss: Autistic 6-year-old Dylan Hockley died in the arms of his special education teacher in another classroom; his parents have set up a memorial fund of their own to help children with autism and special needs

Another example was the Sandy Hook shootings, in which the entire ordeal was a tragedy… but what really hit home the hardest was little Dylan Hockley, a 6 year old boy with autism. In this story, once again, I was reading it with a heavy heart as I normally would but then I got to this part and I just felt crushed:

“He said that Anne Marie Murphy had been found with her arms wrapped around Dylan … that is what we had hoped for — in a very strange sort of way to hope for something.”

“She loved him and he loved her and she would’ve looked after him no matter what,” she says, fighting back tears. “To know that he was with her, and that he wasn’t alone, that gives you a huge peace of mind … to know that he was loved even in those last moments.”

I can’t stop seeing, in my mind, what it must have been like to be terrified, holding this little boy that is terrified too, despite having no idea what is going on and to know what’s coming and then…

I keep putting myself in these people’s shoes. I can’t help it anymore. I can’t not see the little innocent faces with so much life left to live and their parents that were powerless to help them.

I can’t imagine what those people are going through but it doesn’t stop me from imagining it’s me anyway. It doesn’t stop me from thinking about how much it hurts just to think about that happening to me… to my own child.

That’s how I know I’m a parent. That’s how I know I’m not just some guy looking after some kids.

I can’t read these stories like I used to. I can’t watch the videos like I used to. It doesn’t just sadden me anymore. It hurts. I really really hurts.

Before I had children, even for a while after, when other parents would tell me that your perspective of the world would change, that the way you feel about a lot of things would change, I thought I understood. I didn’t.

I can’t read the last words of a dying child anymore. Not without shedding a tear, or more. Not without profound feelings that will affect me for a while after.

That’s how I know I’m a parent.

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Autism Fears – Do you share these?

fearAutism awareness, for many, only includes the facts and figures, the stories of heartache and the “struggle” that the media likes to talk about so much. It gives parents so much fear in their hearts that some just outright refuse to have children just to avoid the risk of having a child of their own with autism.

I have my own fears. After years of seeing this “awareness” thing breed more and more fear, I’ve come to develop my own fears as a direct result.

  1. I fear that doctors will continue looking for a prenatal screening method to start giving mothers the option to abort a child just because it has autism. There are already far too many beautiful lives not being lived just because parents decide not to conceive just due to the risk.
  2. I fear that, should my son find someone wonderful to love, and marry and have a life with… that she may fear the thought of having children with him. Autism is genetic after all. The risk is automatically amplified. I’d hate, hate, HATE, for someone to hesitate in giving my son a family of his own because of their own fears.
  3. I fear that, as the ratios get closer and closer to 1 in 2 (they’ll never be that but they’re getting there), one day people may see my son as “one of those people.” Awareness is nice and all but there can be awareness without acceptance. And if that happens, if there becomes a division within society rather than an inclusion, my son may find himself having a tougher battle than I ever had.
    An individual is great. People scare me. And society, thus far, hasn’t given me much reason to think that they can overcome their fears.
  4. I fear more and more people will continue to replace the risks with much bigger risks such as feeding bleach to their children or refusing to vaccinate. People are willing to try anything. And by anything, I mean anything. You can only try “anything” for so long before you start treading into unhealthy territory.

Each April, with the increase in awareness efforts, I worry. My own fears set in. I see people talk about how hard it is. How terrible it is. What the numbers are. What’s worse. What’s not right. What’s not funded. What’s not available. And I see people afraid.

At least once a week, I receive emails from people telling me that they fear the risks. If they already have a child with autism, the doctors tell them the risk increases with another child. If they’re expecting a boy, the risks increase. If they have autism in their family, the risks increase. Risk, risk, risk!!

One day, I fear, the playgrounds will be empty. The classrooms will be vacant. I fear the future.

I used to fear the future anyway, for what it would not do for autistics. Now I fear it for what it might do. If the fear continues to grow.

My child already has the deck stacked against him. I’m afraid to think how much harder it can get by good people thinking they’re doing good things but not recognizing the fear they feed.

Awareness is good. Awareness is necessary. But awareness without education, without explanation, without acceptance… that’s what I fear.

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Diagnosed as an adult, recalling my childhood, reaching out to other adults on the autism spectrum

qandaMy family has a lot of interesting stories to tell people about the younger me. That, in itself is not unusual. However, the stories always… I don’t know. I don’t resent my family for telling them over and over again but they always made me feel a little, strange. Uneasy even. Not so much that I’d wish they wouldn’t tell them anymore but at the same time, something just didn’t sit right.

First, a little history from more recent times, my first child was diagnosed with autism at 2.5 years of age and ever since then, I had become much more aware of my own self as a result. It’s not that I didn’t always know I was out of place, that much was very very obvious. But without a point of reference… it’s just an indescribable feeling. However, once I began to see so much of my own life flash back at me as I experienced these things for a second time as an extension of my own son’s experiences, I knew that I had to take action.

So at the age of 35, I found myself in my doctor’s office telling them that it was time that I had an answer. Rather than always suspecting but never really knowing… I needed to be sure.

I was diagnosed with Aspergers, or “Autism Spectrum Disorder” as per the DSM 5. I was sure to ask if I was assessed using both the old and new requirements and they assured me it was true.

Before then, I had kept my unease silent all my life. I had to, I couldn’t describe it. After I recognized what it was, I still kept it silent. Because I didn’t dare claim something about myself that I couldn’t be sure of myself, something I couldn’t prove. Not something as important to me as autism had now become.

Finally, when I was officially diagnosed, I wrote about it in a 3 part series, you can read part 1 here, but I also promised that this blog wouldn’t be about me. It’s about my son, plain and simple.

However, in the interest of autism awareness, I feel this is an important point to make. Because people need to realize two things:

  1. The ratios you hear about children having autism? 1 in 88? 1 in 110? The same ratio exists for adults.
  2. Many adults that have autism… don’t even know it.

I have to ask myself, if I had never had a child with autism and thus, never come to know as much about autism as I do now, would I have ever known what it was about me that just didn’t seem to add up?

Think about it.

Back to the topic at hand, old stories that cropped up every time my family met someone new or were just telling old tales, I suddenly realized why I’ve always had this uneasy feeling about them.

One such story involved my grandmother working around the lodge, it was a hunting lodge with a trailer park. While cleaning up one building, I was playing with my toys all by myself. After a while, she moved on to another building to do laundry. She got talking to someone and realized, an hour later, that the last time she had seen me was back at that first building. Rushing back, because it had been an hour and who knows what could have happened, she found me, sitting on the floor, still doing what ever it was that I was doing with my toys, totally oblivious to the fact that she had ever left at all.

I was “in my own little world”, as she would describe it.

Other stories involved babysitters that would all describe me as the best, most well behaved child they had ever babysat. Because I was so quiet. I listened perfectly. I didn’t get into anything, no need for child proofing and I just stuck to my routine like a well oiled machine.

Another time, my grandmother recalls a time a blue van pulled into the parking lot. My father had left me 3 years earlier when I was 2 and yet, when this van rolled in, she thought it might have been him coming back. It was the same model, same size, same blue. Me, being 5 years old, looked out the window and immediately said “oh… that’s not him” and left. Sure enough, it wasn’t.

I could keep going on and on with stories like these that are not.. bizarre. They’re not so very different from anyone else’s stories that I would ever think that they made me different from anyone else. Even though, the truth was, the fact that these stories were just unbelievable enough were what made them such great stories for my family to tell. I just never thought much of them beyond “ya ya, I was quite the kid” and left the spark of unease behind me.

There are also instances, not so much stories, that hold the same feeling of unease for me.

My mother and step-father moved around a lot. I attributed my never having any friends to that, despite the fact that my step brother always did.
I was nearly forced to go into a special school for being too smart at one point, an act that freaked me out so much that I never studied again another day in my life so as to never ever be threatened with being an outcast again.
I never attended a party or group gathering that I didn’t have to and the ones I did have to, I sat at a table, by myself. Even at the prom. I figured I just didn’t fit in. Anywhere.

For many adults, we look back on our lives and rationalize the events away as merely a shyness, or a result of our situation or surroundings because at the time, that’s all we had for a reason. We had no one to talk to, there were no doctors that would recognize it. Besides, we wouldn’t dare draw that kind of attention on ourselves.

My childhood was not out of the ordinary. I was.

I always knew it. But only on a subconscious level. Without knowing why, I never knew how.

Still, I like to think that I turned out ok. My family didn’t treat me like I wasn’t ordinary, they couldn’t have. They didn’t know either.

I don’t think, looking back, that much could have been done differently to give me any better or worse outcome from where I am now.

Still though, as an adult that is now diagnosed, I now have definitive answers, and that makes a very real difference. It could have made a difference then too, maybe.

Either way, difference or not, I think that it could make a difference for others even more than myself in that, if I can raise awareness of what and how this happened for me, perhaps it will enlighten others that have felt the same way. Perhaps even raise awareness for others that work, live or simply know another adult that may seem… different, somehow. Perhaps that little bit of something about them that you can’t quite put your finger on is actually a sign of a diagnosis that never happened.

My child will know. He’ll have a name to give the feelings that he can’t quite describe. And I can only hope that it will help him some day in coming to terms with those feelings and even living with or over coming those feelings.

But there are many who will never know. There are many who do not know now.

I’ve raised awareness for my child. And will continue to do so. But there are more people out there than just my child. And they’re not just children.

I really wish someone would have been there to say “You feel alone, but you’re not. This is why…” but there wasn’t.

I’m not sure I could ever truly explain just how lost that can make you feel. Feeling like you don’t belong is one thing but feeling it while having no idea about the why or the how of it is… you can’t help but judge yourself. And not in a good way.

To have just one person that could have recognized a symptom, a sign or just to say “maybe you feel this way for a reason”… well, I would have really liked that a lot.

I know there are others out there who feel the same way. I want to reach those people. I want you to reach those people. I want those people to have someone that sees them for who they are and is willing to reach out one time and say “I have the answer you’ve been looking for.”

It’s never too late to find out the truth. It’s never too late to know yourself.

Autistic adults might be functioning in society just fine but that doesn’t mean that they’re functioning fine… inside.

Until you know, until you have a name for it, until you have an answer… you can never truly know yourself. You’ll always feel alone inside.

And no one should have to live like that. No one should feel like that their entire lives.

No one should live without knowing who they really are and what they’re capable of.

I know that now. And I want to share that with people that need to know it too.

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Autism advocacy of the future – our children

megaphone-300pxAutism has been around a very long time. It’s definition? Not so much. But even in the last 60 years or so, awareness has and even the definition of autism itself has changed quite dramatically over time.

It started with one doctor, then a couple of doctors and eventually a medical community that would dare to write about it and so on until today, we have parents and even autistics themselves emerging as, not really the dominant voice but certainly a loud and powerful one. At least, it’s getting there anyway.

It’s encouraging but I know that there is still a long road ahead. With constant battles between whether or not the “low functioning” or “high functioning” groups should get the more prominent voices, whether those that want a cure or those who want acceptance should be heard the loudest or most often… progress will surely still be made but there is no solution to the fights or even societal acceptance/understanding any time soon. There is obviously still a lot of work to do.

I have two children. One with autism and one without. I do not know if they’ll continue to advocate for autism in the future but if they do, I’d like to think that no matter which approach they take, that they’d be listened to.

One as a self advocate, one as a sibling, one as an autistic parent maybe and one, possibly as an autism parent. It’s in their genes, this I know. So the future is ripe with possibilities of any scenario.

I’d like to think that, if my advocacy has meant anything at all today, that one day in the future, no matter what their role, no matter which end of the spectrum or what their goals may be, that no one ever try to silence them.

If they’ve learned anything from me at all, then they will know that their own hard work, their own message, their own passion… that is what will drive them in the future. That is what will make them heard. That is what will move people to listen.

And most of all, no matter what, no matter who and no matter how much they try… never ever, not ever, let anyone tell you stop.

Both of my boys have a lot to offer and they still have a lot of growing to do. Should they decide to, should I do my job effectively, I can only hope that they would advocate together, as a team… an unstoppable force, instead of against each other.

Because that’s the kind of advocacy I want for my children, for all of our children and for the future.

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