Archive | March, 2013

The reason we cry when someone is nice to an autistic child

kiss cheeseburgerRecently a photo of a girl kissing a cheeseburger went around the internet like a lightning bolt, shared by millions and adored. I won’t get into the whole story but you can read about it here.

Most people loved the story while some others questioned, why is it that we cry just because someone is nice to an autistic child?

Stripping away our desire to have this happen with our own children, it’s a fair question. No one cries when someone does this for just any child. No one even makes it into a story and it certainly doesn’t go viral.

Is it because we’re supposed to feel pity or sorrow for autistic children? Is it because autistic children are poor little defenseless lambs in comparison? Is it because autistic children are viewed as the underdog and thus needing special treatment and we just love to hear that they get it?

Or is it because it simply does not happen? At least to us.

When you have a child with autism, you feel the stares as your child behaves in ways that others may not understand. We feel the judgments as people think we’re terrible parents while our child suffers a meltdown.

More so than that, we know full well just how cold people can really be when we ask for something as simple as an uncut burger and they huff, roll their eyes, refuse to appease us or do appease us but do it with an obvious amount of disdain for what we’re putting them through.

It’s because we know what it’s like to have to just up and leave a nice lunch out because someone refused to simply do something we needed and our child erupted into a complete and uncontrollable meltdown.

It’s because we know just how powerless we are against bitter, unhelpful and even rude people who simply do not care about you or your child.

So when we see someone, not just someone but their manager and other co-workers and an actual group of people who go out of their way to not just be understanding but to do something special, no matter how small, or how big, but to just do something they never had to do at all… it’s a tear jerker. It’s a shot to the gut… because we want so bad for someone, anyone to just be kind enough to do that to our own child. Just once.

Because trying and trying and trying to find someone who’d simply show us and our children just a little bit of compassion… we keep coming up empty.

And in this one photo, this one story, this one simple act… we find it.

In that instant, we have renewed faith. In others. In ourselves, that one day we’ll find someone like that too and should never give up. And most of all, in humanity.

There are kind people out there. People who won’t ask me to leave. People who won’t judge me. People who won’t grunt as I make a small request of them on behalf of my child. People who will not just accept that my child is there but actually make an attempt to make my child happy… no matter how silly it may seem.

There are people out there, who care.

Today, right now, in this world, that’s a nice thought. It’s comforting. There’s hope.

They’re happy tears.

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Don’t fear autism and certainly do not fear your own child

autism fearAutism awareness, I think, comes at a price: Fear.

Don’t get me wrong, there is a very real need for awareness. New parents that know what signs to look for can get a diagnosis for their child early enough to begin therapies in the very earliest stages of life which, as we all know, is the best shot that the child will have at growing up to be fully independent.

However, awareness also makes new parents afraid. It gives them reason to question whether or not ever even have a child. It brings them great sadness and despair as they look towards the future with more uncertainty than ever before… and all because of autism. Many parents are even afraid to vaccinate their child, risking exposure to debilitating or even terminal illnesses rather than risk the possibility of autism.

I just recently received an email from a new mom, her 2 year old being recently diagnosed with autism and another baby on the way, is scared to death as doctors throw %’s and other facts at her about what the likelihood is that her second child will also be autistic. She hasn’t even had time to get over the grief, the guilt, the feeling of being so alone… and she’s thrust into the uncertainty of what may or may not happen with her new baby.

Having a child, it’s the most magical thing there is! It’s that happiest moment of a person’s life. It’s the biggest cause for celebration and elation. It’s something to be excited about, enjoyed and savored.

Instead, this mom and many like her are afraid. They fear the %’s. They fear the risks. They fear the uncertainty. And worst of all… they fear who their new baby may be. They fear their own, unborn child.

I can’t even begin to tell you just how wrong I feel that is. I can’t even begin to put into words just how much it hurts to think of parents feeling this way when it should be the best moment of their lives.

It’s because of autism awareness. That great deed we’re all doing by making people aware.

Sure, it’s mostly the media to blame, in making autism the most feared “epidemic” since polio. Even the charities, the ones that are supposed to be helping people, aren’t helping much by supporting studies that try to find some cause and furthermore, some way to prevent it. Those dollars could be better spent in educating new parents and in reassuring them that help will be there for them when and if it turns out that their child does have autism.

How many children were never born because their would-be parents were afraid? How many laughs were never laughed? How many first steps were never taken? How many lives that should have been… weren’t? And because of what… fear?

It’s our duty to not just make people aware but to support them in advance. To let them know that whether their child has autism or not, whether it feels like it or not, they are most definitely not alone.

Don’t just “light it up blue” and think you’ve done your part. Don’t just write a blog post spouting facts and figures. Don’t just share a tweet or a Facebook status and call it a day.

This April, for autism awareness month and Autism Awareness Day, don’t just be content with the same old stuff that everyone else is doing.

Instead, picture a friend or a family member or even just some random person out in the world somewhere that is considering having their first child and then think about what you would tell that person to reassure and comfort them, not scare them.

I’m not talking about only sharing ‘feel good’, uplifting stories or trying to paint everything with a rainbow glitter brush but rather to not just paint everything black. There are risks and there are facts and figures. But that doesn’t have to be all a person hears. It doesn’t have to be all gloom and doom.

Think about what you would do if it was “Autism Acceptance Month” instead. You would still share the numbers but your over all message might be a bit less scary than if awareness was your only goal.

The reality is, a child is a child, beautiful and innocent, with or without autism. And that’s cause for a lot of happiness. With or without risks, embrace that new life and rejoice in all of the happiness it will bring.

And if your child is autistic, I can tell you that, yes, it will be hard at first. But you won’t love your child any less. In time, your child will show you a whole new perspective on the world that you never dreamed possible. And one day you’ll look back and understand why you were afraid but tell yourself at the same time that you made the right, and best, decision of your life. Because your child really will be that important to you.

Please don’t fear autism and certainly don’t fear your own child. 

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Autism Numbers – Just how many people are being diagnosed with autism anyway?

surveyA recent survey just came out (March 19, 2013), although the news is calling it a “study” which gives it more importance. That survey is abuzz around the world as people are now telling each other that the autism prevalence numbers are at 1 in 50 school children.

Very quickly, people took to social media in shock and dismay at these new alarming numbers. Some were even more scared than before of their environment, some were mad that the numbers were so high and yet being ignored and others shouted out “I am not a number!”

Still though, it’s just a survey. A phone survey.

A margin of error

In this survey, they phoned some 95,000 parents and of those, only 25% actually participated. And even then, chances are that only those with children that were diagnosed were inclined to take the survey seriously. Oh and let’s not forget, not all parents have photographic memories or even know as much about autism as they may claim to, so there’s that.

The big thing to take away here is, it’s just a phone call to some parents. They didn’t ask for nor look at any medical records or talk to any doctors or officials. They didn’t compare what a parent said to actual facts or reports. It was all based on the honesty system.

Now, that’s not to say that the numbers aren’t still alarming or even worth taking note of but for the media to make a big deal out of it… not so much. The truth is, the CDC probably should never have released such an unscientific piece of info as this in the first place.

This places into question the other studies, such as the one that found that 1 in 88 children are on the autism spectrum.

This one was done using medical records and in talking to professionals. But still, how accurate is it? Certainly more accurate than a phone survey but still, it still has a rather large margin for error itself.

Consider this, many people (children and adults alike) still go undiagnosed or even misdiagnosed. I’ve had two people, just this month, message me asking about getting assessments. One person, an adult, said that they are trying to charge her $1400 to do it. She can’t afford that and will likely go undiagnosed.

Another person, a parent of a child, said something similar. Because of where she is, they want “thousands” to do an assessment on her child. Again, that’s just not feasible.

Where I live, very remote, it’s actually quite difficult to get an assessment and even harder to get services simply because of geography. There are no major centers nearby.

Then you have the, all too familiar, doctors that seemingly either diagnose every child they get with autism to help them get access to services or never diagnose any children because they don’t want to contribute to the mass hysteria and hype.

There’s also the issue of getting the referrals for the assessment in the first place. I vividly recall telling my family doctor not once but twice that I wanted an assessment for my son and both times he insisted that my son did not have autism. After I returned with the official diagnosis, I gave him a book on what autism is. He is a good man, he read it.

But these cases are quite common. And should be considered.

Yes, it’s far easier to get a diagnosis now than it was 20 years ago and yes, some doctors are all too happy to hand out diagnoses like they’re Aspirins but the fact remains that as much as it is easier, it’s still not easy.

Many people still face a multitude of hurdles and even if those are met, there’s no guarantee that the diagnosis is a correct one.

And so the CDC sends out a team to pour through the paperwork of this whole mess and make some sense of the numbers.

The result, as I said, is far more accurate than a survey with random parents but it still has it’s own margin of error.

On the plus side

So what good can come of wrong or even inflated (maybe even under-estimated) numbers?

Well, services for one.

Many times these alarming numbers can spur a person into action, giving them the drive and motivation needed to start a new program and provide a new service that was lacking before. They see this large number of children that need help and they decide that something has to be done.

Sometimes, rarely but sometimes, these numbers can even push autism up as a priority during government meetings and help in funneling a little extra funding towards the autism community.

One thing it most definitely does is raise autism awareness. Even if it’s very negative, in the form of fear, it still prompts new parents to find out more. And that can lead to an earlier diagnosis for their child and as we all know, early intervention is key.

A grain of salt

So keep in mind that when you read these news stories or “studies” that there is always a margin of error. There is always a certain portion of it that is inaccurate and that there is always a positive and negative side to these things being out there.

Shutting them down may prevent some services or information from ever being out there but promoting these things may also perpetuate unnecessary fear and maybe even harm, if it pushes more people to stop vaccinating or even from having children at all.

Think of it this way… it’s just a bunch of egg heads fiddling with numbers and proving… nothing.

And the media is doing its best to turn it into a news story that will get you tuning in.

When you see it for what it is, it doesn’t seem so bad.

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If 1 in 88 did NOT have autism

Let’s pretend a study just came out that found out that 1 in 88 people did not have autism. What would the media reports look like? What would be some of the early signs and symptoms?

I imagine it would look something like this:

What to look for

  • exhibits a tendency to push cars back and forth rather than perform basic geometry
  • eats everything
  • places blocks with no regard to shape or color
  • babbles incoherently at very early age
  • shows no real interest in any one specific topic, spreading attention all over
  • sleeps for excessively long periods at a time, sometimes 8 hours straight
  • smiles for strangers and has no problems with large crowds

Media reports would include:

  • Epidemic proportions as more and more children are being diagnosed as lacking autism
  • Government ill prepared, provides little funding and lack of services for those without autism
  • Company finds great community support as it has seems to have no problem hiring people without autism
  • Children without autism have trouble fitting in at school, constant disruptive need for socializing leading to lower grades
  • New medication being tested to help children be less “different” than those with autism
  • Brain scans show overload of electrical activity in those without autism
  • Parents insist that insurance covers therapy to help children regain focus and stop being such social seekers

Think about it

If everyone learned what they want to learn, and focused on it, and sacrificed social conventions to indulge their desire to immerse themselves in the fields and subjects they love… those who did not do that would seem quite bizarre. Even, outcasts. Some people would want them medicated.

Just consider, if a class of 30 children had one child that just kept talking while the rest felt a build up of anxiety and unease because of it, that child would be removed and put into a “special” class where they could be with other social seekers.

If a group of 87 people focused so intently on their subject of interest that they became experts in their field, the 1 remaining person that could never decide, that could never focus and could simply never give themselves 100% to one subject… that person would be considered a misfit, a failure and not functional in society.

Another way to look at it

A company seemingly comes out of nowhere actively looking for these “different” people. They need social people that can provide the customer service or sales expertis. And the management have made accommodations for them by setting up social areas for them go that would not disturb other workers. By allowing them breaks and leaves of absence if they really need it since they aren’t as dedicated and focused on their work as everyone else.

That company would be in the news and heralded… a bright light in an otherwise impossible society of ill equipped corporations that neither accommodate nor want anyone that doesn’t fit their mold.

On the internet, there would pictures of people around a water cooler, smiling and talking with inspiring captions about how they just do what they love, no matter what anyone thinks, no matter how much they don’t fit in, because we love them, no matter how society sees them. We’d be asking for people to just accept our children no matter how foreign they seem, no matter how bizarre they may look standing on the street talking away and waving at people for no apparent reason.

Role reversal

love hate reflectionAll of this and it’s only because there is 87 and then there is 1.

But if you are reading this and nodding your head, or any single piece of any of this has you chuckling or thinking “that’s true”, you have to realize that all it took to do that was reversing the numbers.

So let me ask you… what really is the meaning of “normal?”

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A life taken away

take a chanceI was talking with a friend about cancer, how it may take her life. It reminded me of my grandfather who’s life was taken by cancer. It’s… not a fun subject.

But I got to thinking about what exactly that means, “take a life”. Because, the more I think about that friend, the more I realize, that phrase does not mean what I think it means.

Life is so much more than a breath or a heart beat. It’s the culmination of all things experienced, affected, impacted, touched and shared from the moment you came into existence until… infinity.

You probably thought I was going to say until the day you die, didn’t you? But your life doesn’t end there, does it? Do people suddenly forget who you are? Do they suddenly forget the times you had together? Do people who learned something new from you suddenly unlearn it? Do they ever stop missing you?

Life isn’t breathing, it’s being.

Your first kiss, your first point in sports, your first risk, your first love, the first smile on your parents face when they see the pregnancy test results, the heartaches, the successes… all of it. And not just for you but for those all around you. Those who shared in those smiles, the person you kissed and all those lives that were enriched just by you being a part of it.

Yes, your future, the things you have yet to do can be taken from you. But that’s not your life either. That’s a bucket list. And it is tragic. I can not lie. But it can not, in any way, diminish the life you’ve lived nor the life that will continue to live on in others, in time and in space by you having existed and hopefully, being the best you that you can be.

Think of the butterfly effect. The theory that, if you go back far enough in time and kill a butterfly, that it could spark a chain reaction through time through cause and effect that completely and totally changes the way things are now.

That’s fine for the past. But today, right now, you are that butterfly. And your life, you, you have affected all there will ever be for the future.

Your breath and your heart beat can be taken from you. But your life can not.

Don’t ever let the thought of your life being taken away from you get you down.

Because so long as your life has been, it will always be.

And that makes you pretty spectacular.

So live your life, while you can and do all that you can with it. Because no one and no thing can ever take that away.

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