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

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.


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…


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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How Do You Change The World For Your Autistic Child When You’re A No One?

This is not a rhetorical question, I’m sorry if you are here hoping to find an answer… because I don’t have one. I’m kind of hoping that some of you will reply with some ideas because I’m fresh out. I don’t mean to sound like a downer, but let’s face it, we all want what is best for not only our own children but also for all those yet to be born, with or without Autism.

None of us are Superman, and even he can’t change the ways of man… the greed inherent in humans shows it’s ugly head to us every single day with oil spills, economic collapses built on risky wheeling and dealing at the top, pharmaceutical companies putting profits before health and so on and so forth. How does the average person like me contend with all of this?

I would like to think that if I stick with this blog, if I stick with my minuscule little presence in the ever growing online Autism community, maybe I will play some small role.. maybe my ever so tiny voice will be that last little bit needed to push the community voice from unheard to world changing… then again, I could win the lottery too.

Becoming part of the community has been great, I’ve met some wonderful people that truly are making a difference.. we all know how much awareness Jenny McCarthy and Holly Peete have raised, but they’re celebs. Some people have started up amazing organizations such as Autism Speaks but they’re philanthropists and entrepreneurs. One amazing dad is even running 60 marathons to raise awareness… but then, he’s good at that.

Me? I… hmm… I don’t really have any skills to speak of. I am not a doctor, scientist, athlete, celebrity, no business skills, don’t have a clue about raising money much less having a charity, I don’t have shirts to sell, no radio station, I don’t have wise words of wisdom, I have no real advice to give or knowledge to be writing articles/books and the list goes on and on. I’m just your average guy that started a blog with a terrible domain name and decided to jot down some of my experiences. That’s the best I’ve got and it… gets 20 visitors a day.

I feel so very lost in a world of great people doing great things while I sit here and try to write something positive.  I’ve written some pretty negative stuff actually, but I never do hit the publish button. It’s a bit like therapy at the time, get it all out, into words and then erase it. I figure, maybe I can’t change the world but I do know that bringing other people down won’t help, plus, that’s not the purpose of me sharing with you.

In the end, I guess all I can really ever do is do my best for my children. To always be there, always support them, always encourage them and just do my best to teach them right from wrong… and from there, I hope for the best.

I can’t change the world no matter how much I really wish I could… I can’t even make anything better in my own life. But I’ll never stop trying to prepare my boys for what is out there. I’ve missed my chances, if there were any… but my boys have a long life ahead of them filled with limitless possibilities.

Maybe they will change the world. I can’t do much, but I can dream.

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Have Patience – Routines Are Hard Enough to Change Without The Autism!

Imagine having something set in stone in your life, something you’ve done since you were a child… no matter what happened, you never missed it, or if you did, you were thrown off for the whole day. Now imagine someone asked you to stop, or change it…. right now!

I think that would be a pretty overwhelming task for even the strongest willed of us, humans are pretty good at being able to adapt but I think it’s safe to say that we’re really routine based creatures. We all go to school, we all work, we all live in this wacky social society system we’ve built up around ourselves.

Now imagine that your brain is wired differently where any slight deviation from your regular routine sends you into a turmoil of raw emotion that you can’t understand, much less control.

I can’t even pretend to know what that is like even though I witness it first hand from time to time.

You see, my son is about to turn 5 and he is Autistic. You have to understand that to a 5 year old, a routine that’s lasted 2 or 3 years is pretty much the majority of his life, certainly the portion of his life that he can remember clearly.

The reason I bring all this up is that many people forget what it is they’re doing when they ask a child to stay up later, walk a different route, take a different bus… even to have something else for breakfast because you’re out of their favourite cereal!

Routines take time to change or break, for everyone. But for an Autistc person, it may not be possible at all, but if it is, it will take even longer. Routine is the foundation to a clear mind, feeling safe and feeling in control.

The trick in all of this is to make others understand, to have others realize the difficulty involved. Even the ‘experts’ that recognize this, sometimes simply forget, or don’t realize the impact of their actions. One big area this affects many children is at school as it can be quite the dynamic setting.

Cameron’s teacher and helpers are really great and they write into a daily journal to let us know everything that happens, but one time, they let something slip through the cracks… we noticed a behavioural difference in Cameron but didn’t know the cause. It wasn’t until a while later that we were told that the Autistic children were moved from a private small area to play outside to the common large public area to play for their recess.

They thought they had told us but it never made it into our book… and so some time later, we finally realized why it was that Cameron was behaving slightly different lately. Once realized, we could address it and help him to understand and feel comfortable with it.

As with anything involving an Autistic child, don’t take anything for granted. The smallest detail to you and I can be very important to them.

If a routine must be changed, be prepared to have a lot of patience. Be prepared to be very understanding. Be prepared to weather a storm. Because you’re asking a lot from them, more than you may realize. The sooner you respect that, the better it will go.

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