Tag Archives | awareness

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.

Comments { 4 }

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. 

Comments { 6 }

Dear 50 cent, I hate what you said, but thank you

By on July 5, 2012 in Autism

On Twitter, where these things always seem to happen, a follower lashed out at 50 Cent (kind of tongue in cheek-like), insisting that he release his album early. In an attempt to by funny, 50 Cent tweeted back something that put the entire autism community into battle stations.

And I say, thank you.

50 Cent

50 Cent

What he said

First, let me show you what he said. These tweets have been removed from his stream but he has yet, at the time of this writing, to apologize.

“yeah i just saw your picture fool you look autistic”

“i dont want no special ed kids on my time line follow some body else”

“just kidding about da special ed kids man, i was in special ed day said i had anger issues lol”

My reaction

At first, I was a bit upset but mostly disappointed. I am not exactly his biggest fan although I do like his songs that I hear on the radio. Nor am I well versed in his life but I have heard that he’s more intelligent than most would give him credit for and that he is quite the philanthropist.

Both of these things greatly contradict his remarks and would have me questioning if what I had heard was true.

Still though, I took to Twitter myself and Facebook and Google+ and shared what he had said. I tacked on “Not cool man. Not cool.” to show my disapproval but reserved any emotional response for later… after I had time to think about it.

Holly Robinson PeeteHolly R. Peete

Probably the best response and the one that is making it’s rounds around the Hollywood and news media scene is the open letter from Holly R. Peete, the celebrity mother of an autistic child.

You can read her response here. I suggest you do now if you haven’t already: Dear 50 Cent…

Her letter made a lot of people rejoice, repost and even cry. It prompted a wave of tweets from parents, all sharing their child’s pictures with a single unified message: “This is what autistic looks like.”

Her tweet, with the link to her response, has over 1000 retweets and that’s not counting all of the other people that have tweeted the link. My own tweet to it has dozens of retweets as well.

I can honestly say that I’ve never seen that before. It is amazing!

Wait, why thank you?

So why is it that I am saying thank you to a guy that said something so hurtful? Why am I saying thank you when so many people are so mad that they wish they could meet him face to face to yell at him in person for what he said?

Well, for two reasons really.

Number 1 is that he, and others like him who do these things, are able to unite the autism community, even if for just a moment. All parents, experts, educators, autistics and everyone else associated with the community all felt the same thing at the same time. And as improbable as it seems sometimes, the entire community actually is all saying the same thing… shame on you 50 Cent.

We’re all mad. We’re all waiting for an apology. We’re all disgusted for the same reason.

Oh, it’s ugly, but it’s unity. I’d rather it could come under different circumstances but there it is.

Number 2 is that it shows us just how much work we really have left to do. If raising awareness was step 1, then we’re only now tipping our toes into step 2… and there’s still 8 more steps to go.

The world has become so familiar with autism that it’s now a commonplace enough word to sling around carelessly, just as the r-word has been in the past. And that’s being beaten back, thanks to a lot of hard work from a lot of great people. But it’s hard work all the same.

If celebrity philanthropists can sling around “autistic” as an insult, in an attempt to be funny, then hard work is quite the understatement. But it does mean that people are aware. Now we have to inform.

And despite the lack of apology… I think the backlash and recent media attention (thanks to Holly R. Peete’s great response) is a great step forward towards informing people.

A lot of people are reading and watching and listening to that media. People who knew less about autism than 50 Cent apparently did. And they’re getting an ear full.

Just to be clear

I don’t condone what he said. I don’t like what he said. But it was said and I was mad, for a moment.

Still though, it’s an eye opener. A rude one but an eye opener. And despite the very negative beginning, I think this little episode is actually doing a lot of good.

With a united community and with great people like Holly R. Peete standing up to those who make statements like that, we’re well on our way to ensuring that these little episodes don’t happen again. Or at the very least, rarely.

And I welcome that. A lot of people just found out how very wrong it is to try to use “autistic” as an insult… whether they’re just trying to be funny or not.

That makes me smile. The entire autism community, for a moment, makes me smile.

I really hope he apologizes. That would really put a great little wrap up on this whole ordeal.

Comments { 6 }

Jenny McCarthy announces that she will pose nude in Playboy again “for autism”

By on May 19, 2012 in Autism

jenny mccarthy playboy

First of all, I thought I’d put “for autism” in quotes in the title for one simple reason… she’s not doing it for autism.

You can read the news stories here

Jenny McCarthy is head of Generation Rescue, a charity that claims to fight on behalf of children, specifically children with autism and even more specifically than that, according to them, children that have been harmed by vaccines.

That’s all well and good, I can argue those points another time.

The fact is though, by focusing a cause on children, and then making efforts to raise awareness of those children… fighting for those children… she might as well have said that she’s posing nude for children.

See how wrong that sounds? No one goes nude in order to support children.. or their families. No one goes nude to support ANYTHING other than their own selfish, attention grabbing, publicity seeking stardom.

She’s not doing this for my child. She’s certainly not doing it for your child.

And don’t tell me she’s doing it to raise awareness because I think most Playboy readers gawkers have heard of autism already.

Oh, and the $2,000,000 she agreed to do it for? That goes towards autism in some form or another so it’s all good, right?

In the very second sentence of this post, I said that she’s the head of Generation Rescue… a charity. So think about it for a second.. who exactly is that $2,000,000 going to?

Sure, you could say it’s not in her name exactly, but I’m sure if it was Donald Trump funneling money to his own endeavours rather than to the cause he claims to support… one might have a different opinion.

Even still, even if every last cent does trickle down to the children in some way, it’s still not going to my child or anyone else’s child who doesn’t believe that it was vaccines that caused their child’s autism.

And that leaves out a LOT of children with autism. A LOT.

So again, she’s not doing it for autism.

She’s making a mockery of real causes and real issues.

She obviously isn’t making enough (publicity) out of her shameless self promotion of her books and so she’s doing this.. not for autism, but for herself. And only herself.

She’s in the news today. She’ll be in the news when the pictures come out. She’ll get herself onto the talk shows to talk about it. She’ll sell some more books.

My child will still be sitting on the couch playing Mario.

Great job Ms Opportunist… err… McCarthy.

For the record, to be as clear as I can… I do NOT support this idea, I do NOT feel it represents me or my child at all and I most certainly do NOT think she is representing the community.

This is disgusting. Not because she gets nude for money but because she does it in the name of autism.

For more on my research into Jenny McCarthy, read: The Jenny McCarthy-Autism paradox

Comments { 37 }

Labels – Try as we might, we can’t avoid them

By on May 14, 2012 in Autism

I know some people that purposely don’t seek out an autism diagnosis (or any medical diagnosis) for fear of the label that it will attach to themself or their child… a label that they will have to carry for life.

While I could go into quite the long winded argument about all of the ways that a diagnosis would help far more than it could ever hinder… instead, I’d like to focus on the label itself.

The Unavoidable

Anyone that has ever attended high school knows that you simply can not avoid getting some type of label in life. It doesn’t matter who you are or what you do. Even the popular jocks get labels. See? They’re jocks!

They say that if you’re bisexual, you’re confused. If you’re gay, it’s a sin. If you’re fat, you look disgusting. If you’re dressed up, you’re conceited. If you dress for comfort, you’re a slob. If you speak you’re mind, you’re egotistical. If you don’t say anything, you’re rude. If you are nice to strangers, then you’re fake. If you cry, you’re a drama queen. If a female has male friends, she’s a whore. If a male has female friends, he’s a player. If you’re smart, you’re a nerd.

I could go on and on but essentially, the idea is, it doesn’t matter how big, small, tall, short, popular, unpopular, loud, quiet or anything else that you could possibly be… you’re going to get labelled.

It’s just how it goes.

label jars not peopleJudging a package by it’s label

The problem, I think, isn’t so much the label that we are given so much as the assumptions that are made based on that label.

For example.. if you see a woman with a lot of make up, physically fit, very tight and revealing clothing… many people would say “she’s a slut” and with one little word/thought, they assume they know her entire life story.

It becomes an even bigger problem when the label precedes you.  For example, going back to the high school reference, word travels fast so if you are really smart… people may start calling you a nerd, geek, poindexter… what ever they think will hurt most.. before they’ve even met you.

They can’t possibly know if you’re smart just by seeing you enter a room or walk down the hall but because friends talk to friends… people have already placed a label on you and prepared an entire method of dealing with you before having actually seen you.

This is a very shallow way of living, it’s not fair and it’s very close minded… but we all do it. At least to some extent. When we hear about another parent who behaves one way or another, talks a certain way, believes a certain thing… we’ve already made assumptions and possibly even decided if we’ll like them or not before we ever say hello.

Nicknames are just labels that we approve of

Sometimes, when we get a label based on the way we actually are… as given to us by friends… we don’t mind them. Sometimes they even evolve into nicknames that we live with for many years.

They’re still labels.

But they’re not so bad because they’re not based on assumption, they’re based on our actual personalities or quirks. Sometimes we still don’t like them but sometimes we don’t mind.

Special needs labels

Labels associated with special needs are very rarely welcome ones because they are almost always based on assumptions, misinformation and stereotypes.

When someone uses the r-word in association with autism, I take that very personally because neither myself nor my son fit that definition. No autistics do unless they also have a separate diagnosis for exactly that.

See, if you were to call my son very particular or picky… I’d probably chuckle and agree with you.

It’s still a label.

But it’s one based on getting to know him and what he’s like.

Not all autistics are all that picky. Take me for example. I’m very go with the flow, not caring too much what others want to do as I can do it too, I eat just about anything… my son is the total opposite.

Labels don’t always hurt. Sometimes they are born of familiarity and if welcome by the individual… are acceptable.

One on one, when accepted, labels are ok.

Never any other time.

When made by a group, against a group, based on assumption, rumour or “information”… labels are not ok.

I leave you with this… from the man who played the ninth doctor in Dr. Who.

Doctor Who

Click for Full Size

Comments { 2 }