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

An incomplete task will likely result in an autism meltdown

By on April 27, 2012 in Autism

My son, Cameron, has never done well with leaving something unfinished… it’s especially evident when it comes to video games. It’s for this reason that we try to steer him away from games that can take weeks or months to finish. Certain Mario games consisting of 8 worlds comes to mind.

Asking him to stop in the middle of playing a game, painting a picture, playing with his toys, trying to read, watching a movie… just about any of these things can cause him to have a complete meltdown.

Sometimes it’s not even something that he particularly enjoys… but if his mind is focused on it, he will not cope well with having to leave it before he has a chance to finish what he started.

It’s not always a complete meltdown… sometimes it’s a mood switch. Where he’s been doing great all day, gets interrupted this one time and then, for the rest of the day, he’s moody, grumpy or just plain… not himself.

These are the methods we’ve used to avoid this from happening.

incompleteMake sure it ends

Simple enough right? But this is the best method, obviously, that we’ve found to ensure that there is no issue.

This means that art projects are short, or at least, will never take longer than the time allotted. Movies are played through to completion and that video games are only about an hour long.

The Mario Party games are perfect for this, or racing games. He can start and finish a game in about an hour.

Structure and/or Repetition

One good method is to simply know what to expect each day. This is especially effective at school… when one class ends and another begins, he knows that his time is up even if he’s not done.

It doesn’t affect him as much because it’s how it always is. The same thing, every time.

It’s a bit like my next point, except without having to know how long minutes or hours are.

5 minute warnings

This one varies, since it doesn’t always have to be 5 minutes but essentially, we tell Cameron that his time is almost up, to finish what he’s doing and to get ready to do something else.

This gives him the time to wrap up and put what ever finishing touches he needs on something to help him walk away from it without having a meltdown.

It doesn’t always work out perfectly and he’ll either need a little extra time or we’ll just have to deal with the meltdown but for the most part, this helps him get ready for what’s coming.

Timer

Most children have no idea how long 5 minutes is… which is largely due to our own inconsistencies. Since we’re often doing things ourselves, 5 minutes can sometimes be 6, 8, 10… sometimes even 15 minutes. This can be very confusing and frustrating sometimes.

Cameron does really well now, not really caring just how long 5 minutes is… but at first we had to be pretty rigid.

We’d do this with a timer… having a smart phone with a timer on it is very handy.

When he heard the timer ring, he knew that his time was up. It would sometimes still be a problem since he might not feel he is finished though… again, sometimes having to spare a few more minutes or deal with the meltdown.

Does it ever get better?

Well, Cameron is only 6 so I can’t say for certain if he’ll ever be able to cope well with it… everyone is different after all.

But so far, it’s very encouraging because he copes a whole lot better than he did when he was younger. Which of course, is very much reflective of age just as much as autism. Children in general don’t handle that sort of thing well.

We still have meltdowns to deal with sometimes, particularly if it’s something he really enjoys like a video game or a new movie… but it’s far less frequent now than it was in the past.

We don’t need to use timers anymore since “5 minutes” is generally good enough for him to know that he needs to start finishing up.

Personally, I don’t like having to leave work while I’m in the middle of something I really want/need to get finished. I don’t have a meltdown by any means but it’s hard on me. So I’d imagine, if my son is anything like me, he’ll never fully get over it either.

But he is doing great and has come so far already so I am confident that he’ll manage just fine with dealing with things like that in the future.

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I have Aspergers – Part 3: Life after an autism diagnosis

By on April 25, 2012 in Autism

For more on this series, go back and read part 1: who I am and part 2: getting the diagnosis.

In the middle of my 3+ hour assessment, the doctor took a moment apart from the testing and asked me “so what exactly is it that you’re hoping to get out of this? What are you hoping will happen if you are diagnosed with autism?”

I swear to you, with no exaggeration, I had rehearsed answering that question in my head at least a dozen times prior to going into that assessment but the moment it came out of his mouth… I didn’t have an answer.

changeChange

Up until the doctor had asked me the question, out loud, I had always assumed that nothing would change. That I really only wanted the diagnosis for my own curiosity, to answer questions I’ve had and to maybe help me with my own identity. Not just for myself but for where I stand in the autism community.

But when he asked me… even though I heard the specific words… my mind told me that he had actually said “what do you expect to change?”

And I had nothing.

I’m a grown up now. I don’t change. I have always been how I am. I always will be.

A doctor telling me I have autism certainly wasn’t going to change that.

In fact, if anything… it was going to cement it!

If I am how I am because it’s a part of who I am… do I even have the choice to change it?

I thought about my son, Cameron, who’s been diagnosed with autism for 3 years now… take social gatherings as just one example. I know full well that he will never ever enjoy social gatherings, much less want to go to them. I know that he is going to have to if he is to learn to cope.. but that being who he is… he’ll never actually want to go.

And I can’t change that no matter what I could try or how much I could want to. It’s who he is.

If I come to accept that in my son, that there are just some things that won’t and can’t change for him, I would have to do the same for myself.

Line of thinking

So I get to wondering why I heard a very different (yet kinda similar) question in my head than what actually came out of the doctor’s mouth and I start to wonder why I am so concerned about whether or not I could change even if I wanted to.

My wife accepts me for who I am. I mean, she married me… she must. But even more so since we came to the realization that autism would explain a lot about me. Far more, even still, since I got my official diagnosis and confirmed everything.

Still though… a part of me doesn’t want her to. She shouldn’t have to accept that I won’t change for her. Wait, let me rephrase that…

She and I have come to accept that our child will always be who he is, not just because of who he is but because autism kind of enforces that more so. He’ll never like some things, he’ll always obsess over other things, he’ll prioritize things differently than most people might… we want to help him with these things but accept that it’s just how and who he is.

I love and cherish my wife for being willing to do the same thing for me but I really don’t want her to have to do that. A marriage isn’t about one person doing all the changing while the other does not, whether due to a disorder or not. It’s supposed to be a compromise and a team effort.

The diagnosis really hasn’t changed anything… not yet. And while I feel like it should have given me every excuse I would ever need to not even try to change anything… it has actually done the opposite.

No, I don’t expect that I’ll ever enjoy social gatherings or anything that I’ve never enjoyed in all my years thus far… but still, I want to do better than just “cope”. I want to prioritize differently. I want to do better.

The wonderfully unexpected outcome

One could argue that a strong desire to make my marriage work even better than it did before is the best one could hope for from getting a disorder diagnosis… but actually, it’s not the best part.

The day that I received my diagnosis, I had my son Cameron sit down after school so that I could tell him the news.

I asked him “Cameron… who in our family has autism?”

He replied “Me.”

I said “Well, I talked to the doctor today and found out something new… you’re not the only one in our family that has autism.”

He looked at me said “You have autism now too?”

I told him “Well, I think I always did but now I know for sure. So now I know, and you know, that you’re not the only one with autism.”

He kept his head down as he played with his toys.

I asked him “So? How does that make you feel?”

He said “good” and left to play.

A couple of days later, while the four of us (myself, my wife, Cameron and his little brother Tyler) went swimming at the local pool, Cameron and I were off by ourselves and he said, “Dad, you know why you and me are the same and Tyler and mom are different?”

I said “No, why?”

He said “Because we have autism!”

Since that day, he’s been quite excited about how he and I are the same… and to be honest, so have I.

When I think about the future he has ahead of him, the great times and the struggles that I know he’ll have… I know now that I’ll be able to help him in a way that I never could have before.

I mean, I’m still me. It’s not like the diagnosis gave me Aspergers. I had it before hand. But now? Now that I know it and now that he knows it… he’ll know that I understand what he’s going through.

He’ll know that he can talk to me about just about anything without worrying that I’ll think he’s weird, or strange or.. what ever.

What ever may come, I’ll be there for him. And he knows it.

He’s already a lot happier. He already feels less alone.

That alone makes the diagnosis… no, it makes my entire life worth it.

going forwardGoing forward

Everyone handles news differently, and life situations, goals, stresses… well, you get the idea. So I don’t expect that anyone else would receive an autism diagnosis and feel motivated to change. In fact, if I was to guess, I’d imagine not many have that same reaction.

But that’s part of the beauty of the diagnosis, I think. You never really know how it will affect you until after it does.

You can practice the things you’ll say and prepare for how you want to feel about it… but you just won’t know until after the fact.

And it’s true, doctors could get your diagnosis wrong just as easily as you could have gotten wrong yourself. So no, it’s not a guarantee… maybe I was sure, maybe the doctor is sure… and yet, maybe I still don’t actually have Aspergers. Seems odd to think about, doesn’t it? It seems odd to say it… or write it.

Still though, as much as life has no guarantees for you and there will always still be some margin of doubt… it’s still very relieving be officially diagnosed with Aspergers.

Which is odd.

Think about it.

A doctor has just told you that you have a disorder… that you fit the criteria somewhere in their big book of “things wrong with some people” and you feel relieved by it.

It’s also weird to think that, my entire experience with autism and the autism community has been through my son. I write about him, I experience autism through him, I learn about autism from him… and yet, now, with a single line on a piece of paper… I realize that my entire experience with autism was actually in fact… my own entire life… and I didn’t even know it.

Well, ok, I sort of knew it, or suspected it, for a couple of years there, most recently… but you get the idea.

The point is, it’s a relief. Because I know what I’m dealing with now. I know what I’ve always been dealing with only… I didn’t really know I was dealing with it. To me, life was always just… hard.

Which brings me to my final thought…

hurdlesHurdles

I know this young woman who’s whole life has revolved around her. She wouldn’t even let having a child at a young age interfere with that. She partied all the time, was only concerned about what her circle of friends thought about her, neglected her family, neglected her schooling, work and other responsibilities, she felt she needed to just do what ever she wanted to do and not care about anything else.

But then, not too long later, I noticed that she was starting to ask a lot of questions such as “why is life so hard?” and “why does everything have to suck for me so much” and “what did I do for all this crap to happen to me?”

I shook my head. I really did. Loudly. You’re trying to picture that right now, aren’t you?

Since getting my diagnosis, I’ve taken a long look at my life… there’s been a lot of unhappiness. There’s been a lot of discomfort. To be honest, I’ve asked a lot of the same questions. Why is life so hard? Why does the universe seem to hate me so much? Why does nothing ever seem to go my way?

But you know what? I finished college. I have been a web developer for over 12 years now and done well. I have a beautiful wife, two great kids and a roof over our heads.

I’ve made something of my life… despite, what I know now, is something very very real. A very definite hurdle that gave me a very real reason to ask… why me? Why is it so hard? Turns out there really was a reason.

One thing this diagnosis has done for me, as cruel as it sounds, is that it’s made me want to sit down with that young lady, put my elbow on the table and my chin in my hand, tilt my head sideways and say to her “Life is hard huh? Nothing goes the way you want it too huh? Please, tell me all about how hard it is for you, party girl.”

Because a few years ago, I’d still shake my head at her but I’d sympathize because my life was hard too. Sure, I know it’s because she’s done it to herself, where as I did not. But I didn’t know why life was hard for me at the time.

But now? Now that I know what I was actually up against that whole time? In comparison to her doing anything she wanted and yet complaining that she can’t do anything she wants??

Yes, I’m feeling a little… I don’t even know what you’d call it.

See, I don’t want to “smack some sense into her” so to speak (I’m not voilent so please take that as the figure of speech that it is), but rather, I’d really like to use what I’ve learned to help her see just how good she’s really had it all this time.

I’d really like for her to see that her biggest hurdle isn’t something that she can’t identify… it’s her. Her choices. And that she has the potential to do just as well, in fact, far far better than I have, if only she could see that.

If I could overcome what I didn’t even recognize, then she can certainly do better when she doesn’t have that to deal with.

All this is to say… I just want to help. I feel this diagnosis isn’t about me. It’s about that young woman. It’s about my son. It’s about my wife. It’s about anyone who reads what I write, looking for answers or inspiration.

Before, I’d say that the one with Aspergers (in this case, me) is the one that need not change, need not focus on anyone but himself following something like a diagnosis, to reflect and find purpose.

But now? Now I’m thinking… I do need change. I do need to focus on those around me. To help as best I can. To do the best I can.

My wife and I will be fine. I will do my best to meet her half way in all things.

My invisible hurdles will not be my son’s invisible hurdles.. they’ll be completely visible, and I’ll be there to help and encourage him over them.

And for those who think life is hard, or need a little inspiration or simply have a question… I want to be there for them. Maybe not in person, because the diagnosis didn’t hit me that hard! I still don’t much like social settings. But certainly, I can help online.

My blog, through social media, through my other writings… autism has been important for me for a long time now. Because my son is important. But now, now it’s important because it’s important to me.

I’ve said that 1 in 88 is not the number of people affected by autism, it’s the number diagnosed… well, now, some of those affected people are affected because of me.

And I am going to do everything in my power to make sure that the effect it has is a positive one.

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I have Aspergers – Part 2: Getting the diagnosis

By on April 24, 2012 in Autism

For more on this series, go back and read part 1: who I am.

It has been quite some time since my wife first suggested to me that a lot of how I am reminds her a lot of how my son with autism is. It was one of those things that I would dwell on for a while and would come up between the two of us from time to time.

After a while, I decided that wondering was serving very little purpose. It answered some questions but raised a much bigger question and it did very little good in how I would talk to others about autism because I had this big piece of information to share but couldn’t… simply because I wasn’t sure.

So I finally decided to put my questions to rest and talk to my doctor.

Doctor HibbertMonth 1

A very unpleasant visit with my doctor marked the beginning of the process. Don’t get me wrong, she was very pleasant. It was the part where I had to find the words to answer “So what brings you here today?” that made the situation unpleasant.

No matter how many times to run it through your head ahead of time, when you’re sitting there and someone actually asks you… you go “uhhmm…. well… uhhh…”

So I find my way through suggesting that I need an assessment for myself and then need to explain why.

Let me explain. People who don’t read this blog, even my doctor, don’t know that I know anything about autism. I could just see her, in her mind, thinking “oh great, another one who thinks that just because he has google, he can diagnosis himself with anything that it tells him too.”

But it would seem that she did not think that, she understood the reasons and said she would put in the request.

Month 2

I get called into the local hospital, which is where the psychiatrists, psychologists and others of those fields all are.

I get to sit with a young lady who informs me that she has a questionnaire to run me through before they can determine if I qualify for an assessment.

I laugh and say “so this is an assessment to see if I need an assessment?”

Yup.

About an hour into it, still not done, she’s already suggesting that there are some great councilors at the hospital that I could do sessions with or group therapies. There are even marriage councilors that she could recommend… just in case our marriage needs it.

So we continue on and finish somewhere near the 1.5 hour mark.

She basically asked me a lot about my state of mind… if I’ve ever considered suicide, if I would describe myself as being happy, if I get excited about stuff… and on and on and on.

It was clear that I needed an assessment.

Month 4

A doctor comes in from out of town (because there are none here) and gives me some tests.

Over 3 hours of tests!

I did an IQ test, EQ test, AQ test and an SQ test. There was even some other tests that I didn’t recognize.

On top of all of that was the regular observational stuff. He noted that I was able to make eye contact, was quite fidgety and some other things like that.

One thing that I noticed though, that I thought I should mention… some of the tests actually offended me a bit.

I found that, in some tests, alcohol and drug abuse accounted for at least one third of the questions.

Questions such as “has your alcohol abuse affected your relationship with your family?” and the answers would be “rarely, sometimes, occasionally, often, all the time” or choices to that effect.

Where was the option for never? Or… I don’t drink?

Questions such as “has your drug use ever interfered with your job?” seem very one sided when there is no option to say no… only that it has to be to some various degree.

And they were repetitive… as though they were trying to see if you’d answer the same question differently later in the test if it was worded just differently enough for you to not recognize it.

The thing is… when you are answering 300-400 questions and 1/3 of them are about alcohol or drugs… you start to feel like you’ve been judged before the fact.

Is this really how they think it is for autistics? That they’re all alcoholic drug abusers?

Most of the time, I would just scratch it out and actually write “I don’t drink” or “I’ve never done drugs” and just let them figure it out or I would just not answer.

A part of me sat there wondering… if I’ve never been a drunk or a stoner… will I still qualify for an autism diagnosis? Is that how it works with them?

Still though, I just tried to brush it off and say “they know what they’re doing” and did my best to get through.

After 3 hours, I was exhausted.

The doctor told me he’d be back in town in 2 months.

Month 6

Doctor didn’t show up.

He did say he’d call me in month 7 if he wasn’t able to come back in month 6.

Month 7

No call.

Month 8

I call the hospital and they tell me to call my doctor’s office.

My doctor’s office is all shut down for the holidays.

Month 9

My doctor’s office tells me that they have nothing, know nothing and I have to talk to the hospital or the doctor that did the diagnosis.

The hospital tells me that the results should be at the doctor’s office.

Month 10

I sign a paper at the doctor’s office giving them the legal capacity to track down this doctor and get my results.

Month 11

My doctor’s office gets the results and tells me that they will not give me the results until we can meet face to face…. in month 12!

One full year.

However, I ask to be put on the cancellation list and by some miracle, I’m called in… in month 11.

I talk to my doctor and then talk to a councilor that same day and I am told that it is official.

I am diagnosed with Aspergers and Mood Disorder too.

A long year

It’s been a long year… a long several years if you take into account the time that I’ve suspected it before hand.

But worth it. Because now I know.

The process is obviously not the same for everyone, I would imagine most people don’t lose their doctor somewhere along the way.

But still, I am glad that I waited until after I got my diagnosis to tell anyone… and this is why.

After going through over an hour of questions just to be assessed for an assessment, then another 3+ hours of doing test upon test upon test plus observation plus what ever paperwork he had to do once back at his own office… I feel very justified in not assuming that I could diagnose myself.

I mean, it turned out that my suspicions were right. But still. I am not qualified. That much is so obvious to me now.

If the experts, who attend years and years of school, have read libraries worth of books and go through assessments just like that one on a regular basis are still able to make a misdiagnosis from time to time…. then who am I to think that I could ever get it right just by going on a feeling?

When my son was diagnosed at 2, the doctor made the diagnosis much in the same way I did… I watched his behavior. I could tell that his milestones were delayed and so could the doctor.

But it’s not like that for adults. It’s not that simple.

If you suspect that you have autism, I will take your word for it. Still, I suggest finding out for sure.

No, it won’t change your life and they won’t throw you into services that you don’t need, since there really are none… but believe me when I say that I am very very glad that I didn’t tell anyone until I was sure.

I wasn’t confident of the decision to stay quiet before but after having gone through it all, I am now.

I now have a real answer. And even though I’m still me and nothing much in my life has changed, it is a huge question answered and as strange as it sounds… it’s a big weight off my shoulders.

Tomorrow:

Part 3: Life after an autism diagnosis

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I have Aspergers – Part 1: Who I am

By on April 23, 2012 in Autism

I started my autism blog with a very specific focus, which is why I named it “Autism From a Father’s Point of View.” It was to be a place for me to write about my son, Cameron, his growth with autism and what I’ve learned along the way.

It was never meant to be about me.

But things have changed.

I now have an official diagnosis.

I have Aspergers.

In Retrospect

autism tag cloudShortly after tucking our boys into bed one night, my wife and I talked about our son’s traits and which were due to him having autism and which were due to him just being an average little boy.

During a lull in the conversation, my wife said to me: “You know, that sounds a lot like the way you are” and it hit me like a ton of bricks.

I have autism!

In that instant, I remembered events from when I was 2 and hurt myself or was scared, times when I was bullied, times where I said or did something wrong and the guilt still haunts me, times where I smelled or tasted or felt something so strong that I couldn’t stand it, all the times I’ve beat myself up for not being more social with people, all the years I stayed in my room, by myself rather than be with people, the way I’ve never really fit in with my own family, the way I’ve obsessed over things… my entire life hit me in a flash.

It was at that point, a couple of years ago now, that I became a “self diagnosed autistic” but I would never dare tell anyone. Not because I was afraid of what people might think but more so because I could never tell someone something what I was not absolutely certain of.

Who I am

I am the father of two wonderful children and a really great wife. My oldest son has autism. And thus, this blog was born.

That’s who I am.

Even though I was totally convinced of that and content in that knowledge, I still had lingering questions. Did autism explain so many events and experiences in my life that still stick in my mind as clearly as though they had happened just a short time ago?

It sure seemed to fit. But could I tell anyone?

If I became a “self diagnosed autistic”…
Would it define who I am?
What if I was wrong?
What if I got a diagnosis back and it said I did not have autism?
What if it did?
Would the diagnosis define who I am?
Would it reshape, in my mind, who I’ve been all along?
Would it make any difference at all?
Would it change who I am in the eyes of others?

And so I kept it to myself… well, to myself and my wife. She was the first to make the connection, after all. Which helps… having someone to talk to about it.

But for a long time, or so it felt anyway, I kept it to myself. I think it felt like a long time because I have been so active in the autism community. Often speaking up, often speaking out… and holding back the one thing that I felt should be the most important thing to share.

I saw other self diagnosed autistics speaking up all the time.

Why couldn’t I?

Because I wasn’t sure who I was. I felt it, but I couldn’t be sure.

Then came the diagnosis.

Now I know who I am.

Will my message change?

Now that I know who I am, or at least, am more confident about it now, will it change what I write or how I write?

Well, I already write about understanding and acceptance (I have a Facebook fanpage and an ebook by that name!) and have always written from my heart, how I’ve always felt and believed… so no, I don’t see how anything would ever change.

I’ve always written as though I had autism anyway, because I try to be as true to my son as I can… pushing for acceptance, community unity… and the good as well as the bad of autism.

My blog will retain it’s title. This is about experiences between a father and son. Always has been, always will be.

My diagnosis cements many of the things I’ve believed, it opens up my eyes in a lot of ways that I’m not sure I could ever truly explain but at the same time… it doesn’t change anything.

I’ve always been me. I have always said and written what I truly want to share.

Will it change how others see me? Treat me? Think of me?

Only time will tell.

Tomorrow:

Part 2 – Getting the Diagnosis.

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The winner for the Determination award goes to…

By on April 20, 2012 in Autism

Cameron Determination

Cameron!

Every month, as part of an effort to raise (or keep up) school spirits, the teachers pick a student from each class/grade who demonstrates the most of that month’s selected character trait to win an award.

Sometimes it’s responsibility, leadership… it’s different each month. This month, it’s determination.

And Cameron deserves this one.

From early on, knowing full well that Cameron’s struggles will likely be much greater than the average person’s, I wanted to instill in him some confidence that would still be there later in life because it’s always been a part of him.

So right from the time when he was capable of answering, I’d ask him “Cameron, what do you do when you fall down?” and he’d answer “You get back up.”

That was when he was 3. That’s still his answer today. He’s almost 7.

The reason that I picked this one thing, this one characteristic for him to hold above all else is that, through determination, he can over come any odds to achieve any other characteristic he may need.

If he wishes to be responsible, his determination can help him achieve that. If he wishes to be a great leader, his determination can help him achieve that.

Determination is the key to not just overcoming his own weaknesses and struggles but it’s also the key to achieving more than those around him.

He’ll be in a world with people that do not have autism nor any other disability and while they may accept him and may work with him… it’s his determination that will allow him to progress beyond that… beyond them… to strive harder than they ever will and to surpass them.

It doesn’t matter what he decides to do with his life… so long as he believes in himself and stays determined… he can do anything.

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