Tag Archives | acceptance

Autism Awareness Day – A few things to consider

By on April 2, 2013 in Autism

World Autism Awareness DayAs you are likely already aware, April 2nd is World Autism Awareness Day, or, WAAD for short.

To be aware of something is to “have knowledge of”, according to the dictionary. I think a more accurate description would be “to be conscious of the existence of”, especially when it comes to autism.

The reason I say that is because just about every parent I’ve ever talked to, and I even have to include myself in this, was aware of autism, in that they knew it existed, but really didn’t know anything about autism at all until they had to. That is to say, they had seen the commercials and were told that children were hurting themselves or unable to go to school… but they really didn’t know how autism affected people. They didn’t know the signs to be able to recognize it in their own child.

They were aware. It didn’t help.

So to shed a new perspective on this, I thought I’d lay out some observations, some concerns and even some suggestions in moving forward with this “autism awareness” thing.

Facts and Figures

Autism statistics usually come in the form of ratios, such as how many kids out of how many kids will be diagnosed with autism. But they don’t stop there.  There is complimentary information that goes along with that such as the likelihood of having autism if your family has a history of it, of having a second child with autism, the added probability if the baby is a boy, the chances of autism going up if the mother or father is of a certain age, proximity to a highway, birth information such as c-sections, premature birth, underweight babies, jaundiced babies and the list goes on and on and on.

There was even one study that suggested that countries that get more rainfall are going to have higher autism rates.

Many people dedicate their social network activity on Autism Awareness Day to sharing these tidbits of information in an effort to do their part in raising awareness. Copying and pasting every piece of information from every autism fact website that they can find so that anyone that views their activity that day will become increasingly aware of autism.

This method really only has 2 possible results.

1. You reduce every single person, mostly people with autism but even those without, into a number. You strip away all humanity from these people and leave, in their place, a number on a research paper. People stop thinking about people out there struggling, coping, doing well or not and they start thinking, I hope my child doesn’t become the 1 in the 88.

2. You scare everyone half to death. There is absolutely no reason what so ever to be sharing all of this information except to scare people. And for some people, that’s exactly the point because they’re looking for donations or people to buy their shirts and bumper stickers. Others are so afraid of autism themselves that they are looking to rally more people to their fight. Either way, scaring new parents or potential new parents is not cool. Which leads me to…

Awareness takes two paths

Ever since the day I discovered autism myself, I’ve firmly held the belief that awareness is simply not enough. In fact, I even got the Facebook url, http://www.facebook.com/AwarenessIsNotEnough

The reason for this is that awareness needs to be accompanied with educational material to be effective. And I’m not talking about just numbers, as in the last point about facts and figures. I am talking about thorough, well rounded and well articulated information. This is what leads to understanding. Which is extremely important.

Awareness is quite literally the first step towards understanding and acceptance. You can’t possibly begin to understand something that you are not yet even aware of and you certainly can’t accept it. So awareness needs to happen. There is no denying that.

However, left alone, it takes an altogether different path.

Awareness, all by itself, especially in the case of something such as autism, will lead to fear.

Consider this, if you are not aware of something, you can’t possibly fear it. But if you do become aware of something’s existence, but do not know anything about it, the natural reaction is fear. You can watch any sci-fi movie or talk to any psychologist to see that. It’s called “fear of the unknown”. It’s really quite powerful.

And any autism parent can tell you, most people, like all except a few, were aware of autism but didn’t know anything about it at all until it came time for their own child to be diagnosed. And in between the time when they became aware of autism and the time that they began to research it, they feared it. They wished and prayed and begged that autism would never enter their lives.

Because they read the tweets, they saw the nicely crafted images and they were all too aware of the scary facts. But it was still something they knew absolutely nothing about.

The Choice: Acceptance or Fear?

After a child is diagnosed, most parents feel a sense of guilt, or remorse or even anger as they are forced to come to terms with this thing they’ve been aware of but hoped would never happen to their own child.

At some point though, for all parents, eventually they’ll come to a point in their lives where they’ll be forced to make a decision. It’s not a conscious decision, it happens entirely without them realizing it sometimes, but ultimately, they’re going to find that they’ll have to decide between putting the fears and doubts and grief and anger behind them and accepting their child for who they are or not accepting any of it and embracing the fear.

What I mean by “embracing the fear” is that some parents fight against the autism and thus fight against their own child, pushing them to not be themselves, to not be autistic at all and take that fight outward as they try to find someone or something to blame and forcibly share more and more information that they find in an attempt to perpetuate the fear onto others so that they can fear autism as well.

The Consequences

Awareness is mandatory. It has to happen and it’s been happening for a good long time. But it must coincide with good information.

I use this example when I talk about awareness:

Imagine your very first day of camping. You’re in a tent and it’s very dark out. You hear a noise just outside your tent, going through your stuff.
You’ve heard about just how many dangerous animals there are. You’ve been told about how often campers encounter those dangerous animals.
You immediately become aware. You know something is there. But you don’t know what.
The fear of the unknown grips you as you are all to aware that it could be one of a million things in the forest.
The feeling takes over and you decide it’s best to just pull the sleeping bag over your head and hide rather than look out to see what it is.
That’s awareness without information.

Now imagine you begin to hear little feet scurrying. And then you hear a noise that you know is the sound that a chipmunk makes.
You recognize the signs and your tension releases as you realize that you left the lid off of your jar of peanuts.
That’s awareness with information.

This is how life is for many people when all they know of autism is what they see in bullet point lists from the media or awareness day campaigns.

When a new parent reads “more children are diagnosed with autism each year than with juvenile diabetes, AIDS or cancer, combined“, they’re not only scared because that must be one really huge number but also because you’re just associated autism with stuff that would kill them. Even if a person tries really hard not to, they can’t help but look at that sentence and think “oh no, I hope my child doesn’t have that, that, that or that!” and suddenly, in their mind, autism has become a terminal disease.

And that is beyond scary.

Autism awareness is not a copy and pasted bullet point list. It’s stories, it’s faces, it’s names and it’s real human lives. It’s tales that are told of how things used to be and how you wish they could be now and hope they can be tomorrow.

Autism awareness is about a community working together and supporting each other to relieve the tension and to ease the fears, not add to them.

No, no one is asking you to try to paint such a wonderful picture that people start wishing their next child could be lucky enough to have autism but I am asking that you try to not paint a picture that has people fearing autism more than aids and cancer combined.

I’m asking that you stop and take a moment and question to yourself, before you say or share something, what is it’s purpose? Will it inform a person or scare them? Will it help them when they have a child or will it make them not want to have a child at all? Will it make them want to hide or will it make them want to look outside of their tent to find out more?

I can honestly say, I’ve read far too many emails and private messages from young potential parents that are hesitating  as they make the decision to have a child. I’ve also read far to many messages from people that actually made the decision to not have children. And all because of the awareness they’ve been given without the information to know what it is they’re really basing their decision on.

Awareness has to happen. And I commend you for doing your part. But please don’t stop there.

Tell your story. Tell a tale. Show us a real human life.

Because I don’t want great people to not have great children just because they’re afraid of what they don’t understand.

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

By on March 26, 2013 in Autism

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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If 1 in 88 did NOT have autism

By on March 18, 2013 in 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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Autistic people should be

By on February 23, 2013 in Autism

It’s fully understandable if the title seems to be cut a little short. It does sound like there should be something following that but I can assure you, I intended it exactly as I wrote it.

Autistic People Should Be

Autistic People Should Be

Autistic people should be. That’s it.

Autistic people should exist. They should be accepted. They should be treated with respect. They should just, very simply, be.

There’s a really great “flash blog” going on right now, based on the phrase “autistic people should”. The blog can be found here: http://autisticpeopleshould.blogspot.ca/

The reason for this is that some folks noticed that when they typed in “autistic people should” into Google, Bing or even Facebook’s search, the auto-complete feature of those search forms would finish the phrase for them, prompting them to search for “autistic people should die.”

Basically, this means that this phrase is out there so much that all these search places try to make their best guess that it’s most likely what it is that you’re searching for.

This is disturbing, to say the least. I can’t imagine most people feel this way or would ever want to be searching for that.

But whether that is the case or not, it’s a great idea to write up a blog post or to get some notes out there on the internet to force these search engines to offer up some alternative choices, or better yet, to no longer have the current suggestion listed at all.

And so, this post is dedicated to just that. My contribution to the “autistic people should” phrase and how I believe it should end.

It’s as many before me have said, without autistics or at least, autistic traits, there would be far less engineers, mathematicians, scientists, computer people and on and on. Autistics have always been here, even if it seems like it’s a relatively new thing. Autistics have contributed to far more through out history than you could ever imagine.

Without autistics, there would be far fewer savants, fewer advances in technology, fewer discoveries in science. Without autistics, well, who knows… perhaps we never would have even had the wheel. That seems a bit far fetched, right? But think about how long human history is and at what point, somewhere, some autistic may have contributed something important that without it, we could be hundreds of years behind where we are now.

Bringing it a bit closer to home, imagine a young couple, naive and arrogant, their whole lives ahead of them. They don’t know what autism is but assume it’s just bad and that autistics simply just should not be. Then this couple finds themselves as new parents and their child isn’t making eye contact or responding to their name. Would these people still feel as they did before? Would they still think that their precious little child should die simply because he or she is different? Or would they do everything in their power to ensure that their child has a bright and happy future?

Autistics should be.

Because the alternative is unthinkable.

 

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What my autistic child wishes for you to know

By on February 12, 2013 in Autism

What does my autistic child wish for you to know?

He’s a kid.

What? You were expecting me to say that he has special needs, he sometimes needs a little extra patience from you, a little less judgment, that sometimes he really is so focused on something that he doesn’t hear you, that sometimes he has meltdowns that may seem to be happening for no reason to you, that he’s not really like that guy in the last Hollywood movie or TV show you saw that had some guy with autism?

See, you already know those things. Even if you don’t know much about autism, you know those things. It’s why you expected me and anyone else who writes a “what my autistic child wants you to know” article to list things like that, maybe in hopes that we’d mention something new or say something in some new better or more enlightening way.

kidsThe truth is, the one simple and honest to goodness truth is, which is the one simple thing that so many people seem to forget, for what ever reason, is that a kid is a kid.

All children need extra patience. All children should be judgment free. All children should be able and encouraged to focus on what they love sometimes.

I could go on and on but having a child with autism hasn’t made me realize how much more I need to do for him, it’s made me realize how much more I can do for him, for my other son and for all children.

When I go to my kid’s school and see other children, they say “Hi Mr Duncan!” because they know me. Some can’t speak and give me a wave. It’s because I help them when they need it. Because I smile at them and for them, even when it may seem like they’re not looking my way. Because I see a child. Not a troubled child, not a special child, not a slow child, not a disabled child…  just a child being a child.

And it’s awesome.

I could argue that because my son has autism, it’s made me a better parent and even a better person in general because all of those things you thought I was going to say about autism, while true, have helped me to realize that those are all things that I should be applying to my other child as well and to all children.

So I’m not going to give you a long bullet point list of behaviors, clinical mumbo jumbo or anything else because there’s a bunch of those articles already out there. And even though I’m not doing that, I do encourage you to find them and check them out. More than one, as they all have something the others don’t.

And then when you’re done reading them, consider this… how can you apply what you now know to all children?

So stop looking at a child as “weird” or “not normal” or as “a problem” and stop thinking about how terrible the parent is because the child is not as you would expect them to be. Because yes, that child may have autism but you know what, it doesn’t matter.

Because a kid is a kid. And when you learn how to best understand, accept, respect and encourage the most needing of children, you can then apply that to all children.

They’ll be better off for it and so will you.

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