Tag Archives | potential

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.

Comments { 12 }

The subjective relativity with which we define “normal”

By on April 17, 2012 in Autism

Normal… that peculiar notion of fitting in with those around us. Not with society… but with those around us. In highschool, some people felt it was normal to be with the cool kids, others with the nerds and so on. At work, for me, the designers tend to fit in with other designers more so than programmers and programmers tend to fit in with other programmers better than designers.

For parents, we want our children to be normal in the sense that they feel comfortable fitting in with other children that are good influences. If they tend to fall in with “the wrong crowd”…. then perhaps normal to them is something that we (the parents) won’t be too comfortable with.

For those of us with special needs children, we think of normal in an entirely different context.

Normal is much more abstract than all of that.

Normal is a conflicting array of all that we could ever wish for and the last thing we’d ever want.

not normalWhen our child is born

A funny thing happens when we have a child. I like to call it “their life flashing before your eyes.” They’re born, you flash a glimpse of their entire life… in contrast to when you are dying and you flash a glimpse of your own entire life.

Essentially, we see a fresh new start with limitless possibilities and all of the ways our child’s life can be so much better than our own was.

With that comes a very strong desire for our child to be anything but normal.

We see them standing against the crowd, standing up to bullies, being able to think differently and creatively… all of the wonderful qualities that makes an innovator, trail blazer and leader.

The last thing we want for our child is to be… mediocre… average… normal.

Growing up normal

The whole problem with the dream of bringing a child into the world that will be anything but normal is that we teach them from day one to be exactly that… normal.

Do as your told, eat all your food, say please & thank you, respect your elders and on and on and on… they’re all good things for people to know and do. But without really putting much thought into it, you are setting your child on the path to being normal.

We send our child to day care, school, play dates, the park… all in an effort to make friends like everyone else. To go to birthday parties like everyone else. To just fit in.

Oh, we still want for them to be great… to be smarter than the other kids, to get straight A’s in school and to be the cool kid that others want to hang out with.

But we sort of want them to do it the ‘normal’ way.

Then comes the diagnosis

Chances are, if your child has autism, you knew before the diagnosis that something wasn’t… dare I say it… normal.

But receiving the official word from the doctor is usually the moment that it truly sinks in for us and our notion of just what was and wasn’t normal is completely changed.

It’s pretty much at that point where all of the optimistic dreams of limitless possibilities leave us and we look at our child wishing for exactly the one thing that we didn’t want for them… to be normal.

The talking comes later, if at all, the toilet training comes later, if at all, the friend making comes later, if at all… and each step of the way, you’re thinking “not normal”, “not normal”, “not normal.”

But then…

Hopefully, if we learn how to help our child, where to get help, what works best and what doesn’t and we figure out what our child is truly capable of… we start to realize that all of this time, through all of these dreams and doubts… we got exactly what we wanted.

Our child is not normal.

We wanted it from the start, we dreamt of it and we wished for it… we just didn’t picture it this way.

But that shouldn’t get us down. Our child is beautiful and wonderful and amazing!

We find ourselves taking great appreciation in the nuances of speech, our senses, the patterns around us, the finer details, the strengths and weaknesses in others and ourselves, the world around us and in the power of unconditional love.

Our children continue to grow and show us just how much we’ve been missing in our lives. Just how much we were completely unaware of all around us.

We missed it… because we’re normal.

Our children are not.

Thank goodness.

Comments { 2 }

A funny thing happened on the way to an autism discussion

By on April 6, 2012 in Autism

I have two boys, one with autism and one without. I happen to think of them equally most of the time and I tend to also talk about them equally.

This sometimes leads to some confusion when I tell everyone that “my son did” something.

And it doesn’t mater what I say he did… it could be the most polar opposite thing that an autistic would do and someone will remark about how their autistic child does that too.

Seeing autism where there is none

These are usually parents but even sometimes autistics themselves who will relate to my younger son, the one without autism. Sometimes it’s understandable, as he may be doing something characteristically autistic, such as shying away from others/crowds, having a meltdown… these things sometimes make me wonder too. Truth is, he’s clearly not autistic. It wouldn’t take you more than 5 minutes with him to see that.

At first it was kinda funny and I’d be sure to explain that I’m not talking about my autistic son… but then it happened more and more until finally I was having full conversations with people about how much this happens to other people too.

Sometimes the mistake is understandable, sometimes it’s a stretch and other times it’s like… there’s just no way.

Setting up the assumption

In a way, it’s a bit leading to begin with… I mean, you’re in the autism community, talking to others in the autism community, in their mind, they’re already preparing for an autism discussion. It’s hard to switch modes once you’re in that frame of mind.

My name in most places is autismfather. So when someone sees my name, they assume that I’ll be talking about an autistic kid. It’s pretty much a given.

This can “direct” the conversation right from the get go. I get that. Still though, I can try as hard as I can to make it clear that it’s not my autistic child that I’m referring to and still get a response about how they can relate due to their own autism situation.

Cameron and Tyler

Cameron and Tyler

Not that I’m complaining

The thing I’ve come to realize is that it’s not really a bad thing, it’s a great thing. The more a typical child can be mistaken for an autistic child, the better. Because it means that the lines are blurring. Even if it is still mostly within the autism community rather than the rest of society.

It’s still a bit comforting to know that my children’t aren’t so different. That I can talk about either, in most situations, and no one will be able to tell if I’m referring to the one that has autism or the one who doesn’t.

Is that how it is for everyone? No, most certainly not. Some people have children that are unable to speak or “function” as would be expected for their age… and so the signs are much more pronounced.

But for me, it’s great to know that Cameron is doing so well that I could mention something that he or his brother are doing and most people wouldn’t be able to tell which son I’m talking about.

It doesn’t make Cameron any less autistic nor does it make Tyler any more autistic, they’re still very different from each other and still both with their respective strengths and weaknesses… but there’s enough of a similarity there that people are unable to just know which one I’m talking about.

And in a way, that gives me hope for the future. For both of them.

Because Cameron is far better off if he can be confused for his brother and, even though some people that think negatively towards autism may disagree, I feel that Tyler is actually better off if there are some ways that he can be confused for his brother too.

Feel free to think he has autism. Feel free to see autism where there is none. I don’t mind at all!

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From the CDC: 1 in 88 have autism. Will there be rioting in the streets?

By on March 29, 2012 in Autism

As much fun as rioting in the streets can be, what with the free tvs and tear gas… let’s just all just agree to riot on our blogs instead, where there is less pepper spray.

Besides, is 1 in 88 really worth rioting over? I guess to some, it is. To others, it’s not really a surprise.

By the way, if you want to read, direct from the CDC, as to what all of their numbers were and how they got to this total, check out their report here: http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_e

cdc logoReasons

So how did we get from 1 in several thousand down to 1 in 110 and now…. 1 in 88? Well, let me recap for you a bit of my history in the world of autism.

My son was diagnosed at 2.5 years of age… which was about a LONG time after I had requested it. Why so long?

At 1.5 years of age, I asked my family doctor if he thought that my son could be autistic. He knew my son rather well, I went over all the signs and concerns I had… everything I knew about my child, I put out there for him to hear.

He told me that Cameron was fine, he’s really bright, he doesn’t seem to have anything obviously wrong with him…. just give it time. And so we did.

Shortly before he turned 2, I asked again. This time, said that he felt that I didn’t need to bring him in for an assessment and that it’s perfectly normal for boys to not talk at 2.. and to be “quirky.” I insisted. He said that they don’t do assessments for children until they’re 2 years of age so I’ll have to wait either which way…  he’ll put in a request then.

So he puts in the request, we finally hear back from the hospital… his appointment is made for February. He turned 2 in July. Sheesh!

He was diagnosed “moderate to severe PDD-NOS”.

Why am I telling you this story?

Think about it… if my doctor can miss it, even advise against me getting the assessment done… how many other doctors are doing the same? Forget doctors… how many parents are out there missing it? I bet a parent insisting so much is far more rare than we’d like to think it is.

As awareness and information continues to grow, doctors and parents are becoming far more able to recognize the signs. MUCH better! But remember, my story was only from a few years ago.

So even though we’ve come a long way in the last 50 years, we’re not there yet!

As we continue to reach everyone though, the more children will get assessed. You have to understand, if more doctors can recognize it, if more parents can insist on it…. more children will be assessed… and therefore, diagnosed!

The numbers go up!

On top of that, how many children have been and still are being misdiagnosed? Sure there are a lot of children going without a diagnosis but there’s also a lot of children being misdiagnosed. Some children are being diagnosed with ADHD or OCD or SPD…. when in reality it’s a bit of all those things, which may add up to autism (might not too, but you get the point).

So again, as doctors and parents learn…. those wrongly diagnosed people are being reassessed and given the proper diagnosis… and the people that have yet to be assessed might be given the right diagnosis.

To make matters worse, we have the ever changing definitions put forth by the DSM. It was just the last one that first introduced PDD-NOS and Asperger’s into the Autism Spectrum umbrella to begin with. You just know that’s going to increase the numbers.

Then you have geography. Some areas are simply different than others. Some states have educators making the diagnosis, others have neurologists while others go to a pediatrician. And again, some places have more money than others, more resources, better understanding and more differences that can increase or decrease their ability to make proper assessments.

But what about toxins?

I know what you’re thinking… this is all about genetics and avoiding the issue of environmental toxins. Well, no. All of what I just explained *could* maybe explain all of the increases in numbers, but then it might not either.

The truth is that environmental toxins have most definitely increased over time… especially in the last 150-200 years or so… with industrial and technological ages moving faster and faster.

Do I think it’s vaccines? No. Do I think it could be *something* or a combination of a lot of somethings? Fact is, I just don’t know but it certainly could be.

We’re all living life a little differently than our ancestors did… inside and out. We eat, drink and breathe differently than they did.

However, I do know that our environment most certainly does not account for the entire increase. It does not make the numbers go up all by itself.

If our environment does have an effect on the numbers, then I believe that it’s all of the other stuff I’ve mentioned in combination with it.

Ready to riot?

Now the fun part, let’s riot!!

No, not in the streets and no, not in fear.

The truth is, new numbers or not… nothing has changed. The world is what it is whether or not we crunch some numbers.

What we need to do, together, is use the numbers to further educate and further make aware… if it means increasing the numbers even more, so be it! Let no little autistic go undiagnosed! Parents and doctors should NOT be missing it.

Actually, if you think about it, it’s a bit ironic. We raise awareness because the numbers continue to rise and in so doing, we cause the numbers to rise even more! And then when they do, we freak out and raise more awareness! 

The point is, if ever there was a reason to riot, this is it. We need services. We need help.

Not just us parents but the entire community. Autistics need more help in school, more help in the workforce, more help in life. Not to do everything for them but to be there for them when they need it!

My son is growing up. One day he’ll outgrow the services available to him. I would love to know that he can find work that won’t judge him or treat him unfairly, I would love to know that he’ll have services he can take advantage of if he needs to… whether he’s living on his own or not.

I would love to know that if my son wants to and is able to, he can do any job he wants to do, be anywhere he wants to be and do anything he wants to do, because he can, rather than being told that he can’t because of the label that others use to hold against him.

Riot.
Not to stop the numbers from going up.
To help the people that those numbers represent.

Comments { 10 }

Autism Study of the Month: Co-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders

By on February 22, 2012 in Autism Study of the Month

autism magnetsCo-occurring Conditions and Change in Diagnosis in Autism Spectrum Disorders

Source: http://pediatrics.aappublications.org/content/129/2/e305.abstract?sid=17b1810d-43f8-4c01-aff1-94a64941a94b

Abstract

OBJECTIVE: This study aimed to investigate descriptive characteristics and co-occurring neurodevelopmental and psychiatric conditions in young children, children, and adolescents with a current and consistent or past but not current (PBNC) diagnosis of autism spectrum disorder (ASD) and how such characteristics and conditions may engender a change in diagnosis of an ASD.

METHODS: Cross-sectional data of 1366 children with a parent-reported current or PBNC ASD diagnosis were obtained from the National Survey of Children’s Health 2007 data set across 3 developmental stages: young children (aged 3–5 years), children (aged 6–11 years), and adolescents (aged 12–17 years). Multinomial logistic regression was used to examine demographic characteristics and co-occurring conditions that differentiate the groups with a current ASD from groups with a PBNC ASD.

RESULTS: Results indicated the co-occurring conditions that distinguish groups currently diagnosed with an ASD from groups with a PBNC ASD diagnosis. In young children, current moderate/severe learning disability, and current moderate/severe developmental delay; in children, past speech problem, current moderate/severe anxiety, and past hearing problem; and in adolescents, current moderate/severe speech problem, current mild seizure/epilepsy, and past hearing problem.

CONCLUSIONS: These findings suggest that the presence of co-occurring psychiatric and neurodevelopmental conditions are associated with a change in ASD diagnosis. Questions remain as to whether changes in diagnosis of an ASD are due to true etiologic differences or shifts in diagnostic determination.

Translation

They studied differing age groups of children that were previously diagnosed with autism and found that some of them no longer fit the criteria for a diagnosis.

By the way, PBNC means Past But Not Current… as in, they had the diagnosis but now they do not.

What they do not know is why. Is it because they “grew out of it” or because they’re simply able to “fake it” now as they’ve grown and learned or is it something else?

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

Now, the big problem with studies like this is the the amount of questions is brings up but obvious lack of answers. These types of scenarios tend to leave a lot open to the imagination and the media will simply eat that right up.

Some examples:

Can some children simply ‘grow out’ of autism? One mother tells how her son’s life has been transformed

Autism: Can it be outgrown?

These articles are full of assumptions right out of the gate.. dangerous assumptions. It’s one thing to give parents false hope when it’s possible there is none but it’s another to give them license to just do nothing. You see, while this certainly doesn’t say that all children will grow out of it, it does raise the question in some people’s minds… which may lead them to just leave it up to fate… chance… God. Which ever. They can now stop trying to improve their child’s life because if it’s meant to be… they’ll just grow out of it!

For all we know, it could be that the data they used before was faulty, perhaps many of those children were wrongly diagnosed…. perhaps these doctors are much better (or worse) at recognizing autism symptoms than the doctors that previously diagnosed the children?

We just don’t know. And therefore, to throw around statements such as the one in this news piece is very presumptuous and further more, dangerous.

In my opinion, you have to remember that autism is diagnosed by doctors that observe behaviors in a person. This means that these children truly can learn how to do the things that they couldn’t before, some of those things being criteria based symptoms that define autism. In other words, maybe a child masters the repetitive behaviors, the speech problems and continue to have other struggles in their lives. This would meant that they would no longer fit the criteria for an autism diagnosis and yet, they still very clearly have autism.

Then there truly are those that are misdiagnosed to begin with. There are possible reasons… for example, out growing may very well be a possible reason. But there are also other very likely possible reasons.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

Comments { 1 }