Sometimes being fair and honest can seem a little harsh

By on July 9, 2011 in Autism

If you’ve followed my blog at all, or even gotten to know me on Twitter or Facebook, you should already know that I’m all about the limitless potential of all children, with or without Autism. My whole goal is to not just raise awareness but to have people understand and accept people with Autism for who they are.

However, you should also know that I’m never one to forget just how hard Autism can be on a person. I’m not the type of person to write about the good and/or bad without acknowledging that the opposite is also true.

The situation

I like to come up with my own “quotes” or thoughts that I share, some personal insight that perhaps others may or may not share. I try to inspire or get people thinking as much as I can.

Recently, one such quote has been “corrected” a few times now on me, which is why I bring this up in this post.

No matter the severity, never underestimate a person with Autism. There could be brilliance struggling to get out.

On more than one occasion, some parents have tried to tell me that it’s not “there could be brilliance”… it’s “there is brilliance”.

Let’s be fair

The truth is, I am an optimist and believe that anything is possible, anyone is capable of anything but I’m also very grounded in reality. The reality is that not everyone is brilliant… Autism or not.

Now, some Autistics discover a powerful strength in one specific field, whether it be music, math, art… what ever. Some are so amazing that they are classified as a savant.

The fact is, most Autistics are not savants though.

I realize that it’s going to sound harsh (see post title) but in reality it’s not. Not every single person with Autism is brilliant. It’s just not any more likely than it is for any other people.

As I said, it’s not to say that they can’t be brilliant at something, or work really hard to become brilliant… but the fact is just that, not everyone is brilliant.

My answer to those who correct me

My answer to those people is: “I said what I meant and I meant what I said.”

no labelsI can’t, in good conscience, refuse to label all Autistics as disabled or slow or having a low IQ and then turn around and label them all as brilliant. If I am expected to avoid labeling all Autistics to the negative, then I must also avoid labeling all Autistics to the positive as well.

Instead, I’ll focus on potential because everyone has potential. I’ll focus on possibilities because anything is possible. 

But I will not place unrealistic expectations or insinuations on anyone in an attempt to be overly optimistic and happy sounding.

I’m sorry if this post sounds a bit like a rant or if it sounds a little more negative than I usually am, but the next time someone corrects something I say in such a manner, it’ll be far easier to point them to this thread than it is to try to explain it all over again in 140 characters or less.

Don’t put a label on Autistics that you wouldn’t put on anyone else. Not everyone is brilliant. Not everyone is dumb. But everyone has the potential to be great.

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If you could turn back time and undo the Autism

By on July 8, 2011 in Autism

If I could snap my fingers and become nonautistic I would not do so. Autism is part of who I am. – Temple Grandin

This topic tends to come up a lot and tends to cause some tension between people when really it shouldn’t. The truth is that, just as much as Autism is a spectrum, so are the thoughts on whether or not to cure Autism.

I mean, obviously there’s really only two answers.. yes or no… but the reasons for these answers are quite wide ranging. And none of them are wrong.

Understanding the reasoning

There are some people who benefit from the way their brain is wired, becoming known as savants. They are extremely gifted in math, music, art… usually one specific thing out of a wide range of abilities.

However, that’s not usually the case. Still though, many Autistics and even parents of Autistics feel that there is nothing to cure. Autism is a part of who they are, who they will be and is perfectly natural. Yes, it may present some challenges but removing their Autism would be like removing their sense of humour, or their unique way of thinking.

Sadly, this isn’t true for everyone. For a very large part of the Autism community, Autism is a very real disability that renders a person unable to speak, function… live an independent life. It can make a person very aggressive, fearful and even, as some would call it, locked in their own world.

For people like that, for the people who have to make the hard decisions on behalf of those people… it’s quite easy to understand why they would want a cure. It’s quite understandable that they’d see very little to no benefit of having Autism and would never hesitate for a second in wishing they could go back and take it away.

These are just some examples, as I said, there’s actually a LOT of reasons for answering yes or no.

None of this is really new to anyone, however it should be pointed out that a big part of understanding and acceptance also includes doing so with each other. We can’t judge and condemn those who would choose differently from us when their circumstances are very different from our own.

When my wife asked me

who am iRecently, my wife asked me “If you could turn back time and go back to under Cameron’s Autism, would you?”

My first reaction was, and I’m sure if you’ve read my blog for a while, you’d agree with this: “Have you met me?”

The truth is though, from a strictly curiosity stand point… like, let’s say there was a preview button, where you could simply see how different your child would/could be without Autism… I’d love to hit that button and see.

But would I remove the Autism? Or, to put it another way… would I take Autism away from him?

The answer is no. I would not.

I believe, for me and for Cameron anyway, that he’s actually doing very well and will likely have a good life ahead of him. It will likely be filled with his fair share of struggles and maybe even some very depressing moments… I know my life was… but I think he’ll turn out just fine.

The thing is, I do believe that Autism is a part of who he is. It shapes how he sees others and the world around him. It shapes every bit of the input that he takes in as well as his output.

It will give him unique insights into the world, a very different point of view.

For better or worse, the struggles and turmoils that he’ll very likely have to endure, thanks to that Autism, can make him a stronger person.

With proper guidance, lots of love and tons of encouragement… he can learn to focus the negatives into positives, in time. He can learn that all the greats throughout history saw the world differently, it was that gift that made them great.

And those people were outcasts, they were seen as different.

Would I go back and remove Autism from him if I could? No. He has the potential to be great with or without Autism. He has the potential to overcome any adversity that life presents him.

You may feel differently than I do, I can respect that. It’s a personal opinion that each of us makes for different reasons.

My answer comes with a responsibility

I say no because I believe that Cameron can be a wonderful human being because his potential is limitless.

I also say no because I dedicate my life to being there to help him up when he’s down, to help him see the positives in the negatives, to help him recognize the opportunities and to help him learn how to break down the walls that try to get in his way.

And I know that my wife, his teachers and the people that we have in our lives will support Cameron in the same way.

The reality, the way I see it

One day his dog will die, one day he’ll have his heart broken, one day he’ll feel very alone, one day he’ll have financial trouble….  one day, me wife and I won’t be here any more.

And as much I’d like to protect him from all of that… I can’t. And I shouldn’t. These things are a part of life and these things can build character or ruin a person. They’re the trials of life.

And as much as they suck, they’re a part of life.. and for Cameron, that includes Autism too. For all it’s benefits and even for all the incredible drawbacks, it is what it is and protecting him from it would be taking away a part of who he is and who he has yet to become.

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Dear researchers: please stop

By on July 7, 2011 in Autism, Research

I used to argue that all research was good research, that information is simply good to have no matter what it is. But at this point, I have to revisit that position and question it.

If your research concludes with….

Listen, I won’t argue that you’re more than qualified, you get paid very well and I respect what it is you do and what you’re trying to do… I understand you have the best of intentions, but here’s the thing:

If your research involves the phrase “may increase the risk of Autism” or anything similar… I ask that you please just don’t even tell anyone. Keep it to yourself.

In fact, if you know, going in, that your findings won’t result in 100% of all cases… don’t even bother doing the research. You know full well that a study on how close parents are to a highway when they have a child will not result in 100% of all close proximity cases having Autism so just don’t even bother doing it.

What the results mean to us

statisticsIn the beginning, these studies were very intriguing and really got people thinking. People wanted answers, we were starting to get answers. But what are the answers, really?

“May increase the risk” simply means that instead of 0.1% to 99.9%… now it’s 0.2% to 99.9%.

As far as we know, there’s always a risk of your child having Autism. So it’s not 0%. And we don’t know what causes it so we can’t do anything in particular to ensure it happens (not that anyone would want to).

So ultimately, all you’re really telling us is that doing something to increase the risk actually has very little bearing on whether or not our child with have Autism at all. Because for every study that says the risks go up, I can show you dozens… hundreds of parents that contradict that study and yet their child still has Autism. Or even better, parents that fit the study to a T and yet their child does not have Autism.

Will we ever move on beyond the Refrigerator Mom theory?

Granted, no one thinks Autism is caused by an uncaring mother anymore but it would seem that we certainly haven’t moved on from blaming the mother.

Recent articles include taking antidepressants, not taking prenatal vitamins, environment they live in (twin study) and older studies along the same lines include jaundice, c-section and other birth stresses, living near a freeway… and the list goes on and on and on…. and on.

If you read those articles and others, another catch phrase they use often is “new insight into autism” and yet.. a month later, a new study is released with that same catch phrase and the old one is all but forgotten.

What all of these catch phrases and conclusions really tell us is “it’s the parents fault, they did something that caused it, let’s find out what it MIGHT HAVE BEEN”.

What we’d like to hear

First of all, no one is opposed to finding out that some environmental factor or other possibility is the reason for our children having Autism. We just don’t want to know what it MIGHT BE. We just don’t want to hear about an increased risk anymore unless you are absolutely certain.

Tell us what caused an increase in 100% of the children. Heck, we’d even be ok with 75% or more… because then we’d know what to avoid for sure.

But “an increased risk” really only tells us that you blame us, will keep finding ways to blame us even though you’re not entirely sure why or how.

It’s now out of hand

These studies were intriguing at first, but now they’re just out of hand. It seems we get a new study per month that says they found something that increases the risk of Autism.

But new parents don’t read the ones before right now. They only read these stories as they become pertinent to their world… which is right now, when they’re about to become parents for the first time.

If they had the back story, if they had read the dozens of studies leading up to the one that will be released next month, perhaps they’d know just how out of hand it has all become. But they won’t read those previous stories… they’ll read the next one and believe it. And they’ll be scared.

They’ll take their prenatal vitamins, they’ll sell their house and move away from the freeway, they’ll avoid vaccines, they’ll risk their baby’s life avoiding a c-section and they’ll do it all out of complete and total fear from what they read in a recent study and for what?

The sad thing is, they could do all that and still end up with a child that has Autism. And then what? Do they wonder what they did wrong? Do they blame themselves since that’s what the studies have taught them to do? Or do they accept that despite all the risks they avoided… it was just meant to be.

Your studies mean very little to me any more. I find them to be a waste of money, a burden on the system, a way of blaming parents further, a media circus and a panic storm for new parents.

Crunch your numbers if you have to, talk to other people that did the same thing, compare those numbers, find others that did the same… and so on. Keep doing it until you have some actual answers for us. Until then, stop running to the media every time you have a chance to get your name in the paper.

 

Other similar stories:
Autism shouldn’t be about playing the blame game
“Wombs of Doom” or “How I Stopped Worrying and Learned to Love Poisoning My Children with SSRIs”
“May increase the risk of autism” studies versus real scientific research

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If my child was a flower

By on July 6, 2011 in Autism

glowing flowerIf my child was a flower… would he realize that he was different from the other flowers?

Would he know that he looked the same and yet didn’t fit in with the rest? Would he know that his scent was a little different from the others, that he was a little less vibrant, a little less tall and sturdy?

Would he know that even though he’s mostly the same that he’s different enough for some people to think he’s a weed?

If my child was a flower… would he wish that he could be in a flower pot by himself? Would he wish that he the other flowers didn’t seem so foreign to him?

Would he question the soil in which he lives? Would he question whether or not his water is different? Would he blame the sun?

If my child was a flower… would he hate being stuck where he is? Mixed in among the rest of the flowers, invisible yet obviously different.

Would he know that he’ll be the last one picked? Would he know that most of the other flowers don’t want him there?

Would he care?

If my child was a flower… he’d be the only flower in the group with a hidden element, a special property… the one compound that could be harvested and made into a healing agent. He’d be the only flower in the group that could help the blind to see, help the unloved to feel loved… to help the lost be found.

Will he ever be given the opportunity? Will someone love him enough to discover what is hidden deep within him?

If my child was a flower… he would be a very special flower indeed.

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The world of Autism consists of wait lists…

By on July 5, 2011 in Autism

I recently asked the hospital here in my city how long the wait list is to get an assessment for Autism. Here’s what I discovered:

First, you have to wait until your child is two years of age… this is so that there is adequate development to demonstrate the repetitive obsessions, lack of eye contact, milestones missed and so forth to base an accurate diagnosis on.

Then you ask your doctor for a referral to the doctor/place that will make the assessment… this takes time. In our case, it was a couple of months before we received the phone call.

Finally, that doctor/place will give you a date to bring in your child… where we were when we had Cameron, it was 6 months. Here, in the city in which I live now, it’s 1 full year.

The first wait list is the worst

Wait ListThis is simply unacceptable for multiple reasons.

  1. Early intervention is paramount. You ask for a referral at 2 yrs old, you wait 1 year.. child is 3 before you even start. For the best results, it’s proven that children learn what will dictate the course of their life before the age of 5. That means that 3 out of 5 years are lost. You have just 2 years now to cram in as much therapy and treatments as possible before they’re out of that stage and worse.. off to school.
  2. The end of a long assessment wait list is only the beginning of more long wait lists for treatments and therapies. If you think 3 out of 5 years is all that you lose, you’d be wrong. When we had Cameron diagnosed, we were told that it was a 3 year wait list for ABA/IBI. That would have made him 5.5 years old before he even started therapy. Far too late!
  3. A long wait list means that there are that many children ahead of you and so few doctors to see them. We have all heard the numbers, 1 in 110… 1 in 70 for boys… the numbers out of the Korea study are much higher. The problem is that we don’t have the same ratios for doctors. So few doctors are capable of making a proper diagnosis, they’re in high demand. There’s one in the city in which we live. Obviously, he’s out numbered and having to fill his calendar over a year in advance.
  4. A long wait list makes it impossible for a second opinion. Some children are misdiagnosed. Many disorders/ailments are similar. With so many children being diagnosed with ADHD, Autism, PDD-NOS, Aspergers, Sensory Processing Disorder…. well, let’s just say, the list could go on and on and on… even doctors can get the signals mixed up. Some children may exhibit several symptoms of one disorder while sitting in front of the doctor and not other symptoms… prompting the doctor to make a diagnosis… a wrong diagnosis.
    Even doctors suggest getting a second or third opinion if possible, to avoid mistakes. But you know what? That’s just not possible most of the time and it’s certainly not possible when you miss out on most of your child’s childhood just waiting.

More wait lists?

They don’t end there… you keep going from wait list to wait list. You wait for the school board to tell you if you’ll get into a special class, special school, get an aide, hear about your IEP meetings… you get onto wait lists for the bus system to get to that school. You get onto the wait list for camps, swimming lessons… the list goes on and on and you’ll be waiting on most of them.

It’s maddening and in reality, most of the time, it’s quite unacceptable.

A child’s future should not lie on a foundation of waiting around.

Waiting for the future?

Don’t wait, take action. In the day and age of social media, find politicians on Twitter and ask them for help. Find medical professionals and ask them for help. Donate to local charities and ask them for help.

Don’t like your doctors in your town? Find other ones. Research online, make phone calls. There are other places that will get the job done more quickly but it may mean some road trips.

You might not make any changes for yourself, you may be stuck. But don’t just wait. Fight. The next parent behind you will need you to fight.

Fighting for it now might not help me right now, but it might help some parent in the future who has yet to encounter their first wait list. And if I’ve stood up high enough, spoke out loud enough, maybe their wait list will be a little bit shorter than mine.

And maybe, if that person fights too… maybe one day our children won’t have to wait until they’re 5 to get what they need at 2.

How long did you have to wait? What wait lists have you found yourself on?

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