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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

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Understanding and acceptance means listening, even if you disagree

By on May 7, 2012 in Autism, General

Understanding
Adjective: Sympathetically aware of other people’s feelings; tolerant and forgiving: “people expect us to be understanding”.

I started the Facebook fan page called “Autism Understanding and Acceptance” a while ago with the goal of moving beyond awareness. What this means is that, rather than just simply knowing that autism exists, we must begin to do one simple, but very difficult thing… listen.

We must listen to autistics, parents of autistics, “experts” and even those that we might not want to listen to… the bullies, the disbelievers, the critics… the haters.

And this is quite contrary to what we’ve always been told and have always believed. We’re supposed to ignore the haters. Ignore the ones who’s only goal is to make you angry.

I hope to explain why, at least in my opinion, it’s important to listen.

understandingThe misconception of what it is to understand

First of all, there seems to be this big misconception among some people that tend to believe that “understanding” is something that applies to others who believe the same thing that they do.

The thing that makes “understanding” so difficult is that it requires us to be willing to listen and understand the position of someone that we do not agree with.

We don’t have to agree with them, just listen. Perhaps, through civility, there can emerge a mutual understanding of how each person has come to believe what they believe… even if, in the end, they still do not agree with each other.

For example, this whole post… I am trying to explain how I’ve come to believe that it’s important to listen to the critics and haters while you (the reader) may think that they should be ignored. When you finish reading this post, you may still not agree with me. But you may understand why I think the way I think.

In fact, I could argue that, to be truly understanding, one should seek out people that they disagree with, if only to listen to them.

It is not your job to change their mind. Nor is it really your job to listen. But it is best to recognize that they are two entirely different things. You can listen without having to convince them how wrong they are.

Understanding isn’t something that happens when two people agree. It’s the ability to comprehend why a person feels the way they do.

The uncomfortable position it puts you in

I won’t lie to you, you’ll get stuck in the middle of some sticky situations… and I’d like to give you my fan page as an example, particularly how it relates to the autism community.

When it pertains to autism, “understanding and acceptance” is often considered to be the opposite of “cure”…  there are those who want to cure themselves or their children of autism and then there are those who want for society to have more understanding and acceptance of themselves or their children.

This is such a small part of what it truly is to be understanding. It’s so much more than that.

It’s about understanding why a person might want a cure. What they’ve been through.

It’s about understanding why some people dislike autism, or any disorder or disease or their hair colour or how tall they are or their dripping kitchen faucet. Anything and everything.

It’s about remembering… people are allowed to dislike something every bit as much as they are allowed to like it.

“Understanding” is not a thing that is to be thrust on someone that dislikes something until they learn to like it.

This means that, on my Facebook page, when I post something by someone who feels sad, angry, betrayed…. just… dark… it is I that comes under attack for it. Not the person that wrote it.

It also means that when I post something triumphant, positive, happy…  it is I that comes under attack for it. Not the person that wrote it.

Why? Because people have perceived notions of what “understanding” is and feel that I should share those notions. That by being “understanding” of their feelings… I should also have those same feelings… and only share things on the page which coincide with those feelings.

It puts me in the middle. And unless I share items with people that they are personally comfortable with, they will see me as not being understanding….  for they would not have shared it… because they do not understand it.

But no one single feeling will pertain to everyone. Which means there will always be someone that does not “understand” it.

I can’t win.

Acceptance for the win

Perhaps I can win though… not in a victory, holding up the trophy sense of the word… but by persevering.

You see, understanding and acceptance is not the opposite of wanting a cure for autism.

It’s listening. That’s all.

To those that we do not agree with and those that we do. To those who want a cure and those that don’t. To those that are full of hate as well as those that are full of love. Even to those that will never understand and accept us.

They are people, with valid opinions, feelings… lives.

And it’s true, they might be wrong. We tell ourselves there’s no reason to listen to someone that is wrong.

But how can we ever show them what is right if we can not take the time to understand why they are wrong or how they came to be wrong?

How can we ever hope for them to listen to us if we can not take the time to listen to them?

Besides, right and wrong is such an abstract concept much of the time anyway. Differences, sometimes, are simply that. Differences. No right or wrong.

Understanding the “how” and “why” is the only way to understand the “who”… it’s the only way to move forward towards acceptance.

If acceptance is all you ask of others, then you have to be willing to do the same. Of all others. Not just those you feel comfortable with. Not just those that share your feelings.

Take the time to understand those that you disagree with completely… before you ask someone else to do the same.

Autism Understanding and Acceptance

Autism is not a superpower. Autism is not a curse.

It’s a spectrum of different stories ranging from one end to the other and only those who take the time to listen will be able to truly understand it.

It’s people. Autistic or not. Happy or not. Angry or not. They’re all people.

And they might not understand us. They might not agree with us. They might not accept us.

That doesn’t mean that we can’t take the time to understand them. All we have to do is listen.

That’s what understanding and acceptance is.

Perhaps you disagree. And that’s ok. At least now you understand what it is to me.

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When the care givers are the ones bullying our children

By on May 4, 2012 in Autism

I would like to start this post stating that there’s a growing trend but it’s much likely that this is a much longer lasting trend than most of us think it is… it’s just that we’re becoming increasingly aware of it. Thanks to better recording devices and such, people are getting caught. And thank God for that.

What I’m talking about is when we trust other people to care for our children… to make them feel safe, secure and comfortable…. and those people betray that trust and become the bullies that we were hoping our children would be protected from.

Bullying and Autism

To anyone with autism or that has a child with autism, it’s never been a secret that autistics get bullied more than most other children. Recently, some researchers crunched some numbers and confirmed what we’ve always known.

The shocking part is when we discover that it’s not just the other children doing the bullying.

Grown ups… adults… trained people that are being paid… paid with your tax dollars… adults that supposedly became the person they are today because they loved working with children…. adults… the ones that look you in the eye and tell you that they will take great care of your child…

They’re not adults… they’re monsters.

bully teacherUnder the bed or in the closet, not at school

Children are supposed to be afraid to look where they think monsters might be. They’re not supposed to be afraid to go to where they know a monster actually is.

You see, children don’t see other children bullies as monsters… they see them as meanies or bullies. They’re just kids. They’re just mean. And it hurts and it really sucks. No one likes to be victimized by their peers.

But it’s a whole other level of victimization when it comes from a person of authority… a grown up that is supposed to be keeping them safe. They’re not just mean, they’re not just a bully. They’re the real monsters.

Most kids move on from school and put the bullying behind them. It still hurts to remember but it’s behind them.

But it’s so very much harder to do that when it’s the teachers that did it. That kind of thing scars you for life. You never let that go.

The worst part is… these adults know that. They’re in that position, so they know. They took the courses, they’ve dealt with children long enough… they’re not unaware of the effect they’re having. They’re not oblivious to how smart kids really are, just how much they take in.

People that create bold face lies to parents, that verbally or physically assault a child… they are criminals.

That’s not even the worst part

What really gets me sick is how much the education system is quickly becoming just like the political or religious systems. When these things happen, neither the police nor the media, and certainly not the parents, can get any information out of the school. It becomes an “internal matter” and they just quietly go about their business, giving no information to anyone.

Later you find out that the person that abused the child was simply reassigned, or given leave with pay or… if they are fired.. they’re fired with a nice severance and likely rehired elsewhere to care (or not as the case may be) for other children.

But wait, I’m getting ahead of myself… there’s a reason that much of this goes unchecked in the first place.

See, children are very unlikely to ever say anything. I mean, think about it… you’re a little one at school, who believes completely that the grown up that is in charge is actually allowed to do everything they do… and worse, if you do say anything… they could do much worse than they already have.

How do you speak up to that?

It gets even worse if your child has autism because then there’s next to zero chance that they will tell anyone.

See, in the mind of some people, that makes it “the perfect crime”… they can do and say anything they want because they’ll never get caught.

They also don’t much care what effect it will have, if any, on the child for the rest of their lives. Because they are likely not thinking about anyone but themselves.. they certainly aren’t thinking of the child’s future.

But they know. They know full well what effect it will have. They’re just not thinking about it.

This is what makes them a monster. This is what makes this truly despicable. This is what makes them less than human.

And they’ll do it again… where ever they get reassigned to or rehired with… because it’s an internal matter that the school will handle. Right?

Disgusting is what it is.

Now that you’ve read all of this, I’d like to show you the latest two cases in the news… which are what prompted this post…

First is Stuart Chaifetz’s video where he reveals what he had recorded one day when he was forced to put a recording device on his child. His child was acting quite contrary to his personality and he was getting no answers, so he did what he had to do to find out the truth.

Second is another story is taken from video cameras on board a school bus where aides were supposed to be helping a child put on his safety harness but instead, began smacking him on the head.

http://www.carolinalive.com/news/story.aspx?id=748629#.T6B_EfXUkjs

I am quite happy to report that on this latest story, the aides have been let go, without pay and will be on trial to answer for these crimes.

So what do we do?

Well, many parents refuse to take the risk and choose to home school their children…  and I can’t blame them. If it did happen to their children, they’d likely never know, or at least not for a long time… too long. There really is no way to be sure before hand. It could happen to anyone anywhere and finding out after the fact means the damage has already been done.

Still though, much like plane crashes… even though they do happen, when you take into account how many planes are travelling at any given time… the crashes happen so rarely that airplane travel is still the safest way to travel.

The same can be said for child care, teachers and teachers aides… yes, this disgusting behavior is happening out there… and we’re finding out about it more and more… but it’s still rare.

Still though, even if it’s only happening with 1 in 5,000,000 teachers/aides/care providers…. is it worth that risk?

Is better screening the answer? Well, I don’t know since I’d wager that these people probably really were happy to work with children in the beginning. Years can change a person. So maybe they’d be the best of candidates one year… while not the best choice the next.

Better monitoring systems? That’s probably what I would suggest most but doing so is very costly and takes away from the money available to be doing the actual learning and caring for the children. Still though, it does seem to be becoming more and more of a necessity.

Is home schooling the answer? Well, home schooling does have it’s pros and cons, but if you’re keeping your child home because of the risk of a bad teacher… where does it end? Keep them off the sidewalks for the risk of bad drives? Keep them out of planes for fear of crashes or terrorists? Keep them out of corner stores and banks for fear of robberies?

Sheltering is an option so long as it’s not taken too far, I guess.

I don’t know what the answer is.

All I do know is that by law of averages, the more teachers/aides/care givers there are… the more likely there is to be a bad egg in the bunch. And those laws of averages get heavily swayed when a lack of funding is involved in the equation.

The average is again greatly swayed when there are more and more children that need those teachers/aides/care givers.

The numbers keep going up, the demand keeps going up, the quality…. well, there’s only so many great teachers out there.

Think of it this way… if you can have 20 teachers in the country, you’ll pick the 20 best.

But if you have to have 10,000,000 teachers…. then you’ll have to pick the 10,000,000 best. And the 9,999,999th best teacher is… well, not the best.

So what do we do? Population control isout of the question, not to mention a bit late if it ever was…

I just don’t know. How do we stop this from happening? How to we keep our children safe from the people that are supposed to be keeping our children safe?

The only thing I know for sure is that there needs to be more accountability. Like those aides on the bus facing trial and not getting paid right now… we need more of that.

No more sheltering or handling things internally or shuffling the deck…. people need to be held accountable. A criminal is a criminal whether they are a politician, religious leader or a part of the education system.

Enough of this.

No more “system” except the justice system.

It’s the only one that matters.

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AutismFather to “I Wish I Didn’t Have Aspergers” – An AutismPositivity2012 Flash Blog Event

By on April 30, 2012 in Autism

autism positivity flash blogDo you really wish that you didn’t have Aspergers? Do you really think that your life would be better or easier?

There’s a lot of advice that I’m supposed to give. Most of it can be found here: Autism Positivity Day Flash Blog

While they all do have some great advice, and I do recommend reading them all, my advice is a little different.

You have something that most people do not

The sad truth is that life is hard for everyone. Even kids that have billionaire parents find life to be pretty hard from time to time. Just for different reasons.

The thing is that most people don’t know why their life is so hard, it just is. They feel that the universe or fate itself is against them.

Think about it. You have an advantage. You know exactly what it is that’s making life hard. It’s not fate, it’s not the universe… it’s Aspergers.

The thing is, knowing what you’re up against gives you the power to change it.

See, I didn’t know about autism or Aspergers until my son was diagnosed with autism just 4 years ago. Even worse is, I didn’t know that I had Aspergers myself until just recently.

That’s the thing… I too felt like the universe was against me. I had no friends, felt alone all the time… life was not just hard, it felt far more difficult for me than for most others.

But I didn’t know then, that I had Aspergers. I didn’t know then, that there was something very specific that was holding me back.

genius vs workThe real problem: Focus + Time

Pretty much everyone in this world is capable of greatness if they focus all of their time and energy into something that they are passionate about, that they really love. And that’s because they get to be really really good at it.

It just so happens that this is especially true of people with Aspergers because one of the defining characteristics of Aspergers is the ability to focus, almost obsess, over certain areas of interest.

What I find is that I sit, wondering why my life is so hard. Or, I wish that my life made more sense. Or I wish that I could just have fun at parties like everyone else. Or I wish….  well, sometimes I just sit and stare at the wall actually.

The point is, time is not on our side if we’re not actually using it properly.

The biggest problem is when we realize that we’re adults now, stuck in a dead end job, and that all of that time that we spent wondering or wishing could have been put into reading, learning, practicing, experimenting and just doing… the things we love!

This is true for most people, by the way, it’s just especially true for people with Aspergers. Because we’re especially bad at time management (judging the passage of time) and we’re also especially bad at handling guilt, anxiety and all the wonderful feelings that come with being alone and/or unable to handle social situations.

And so we dwell. And time passes us by.

Until we wonder why we’re not good at anything. Why we’re alone. Why life is hard.

And we think… if only we had used all of that time, staring at the wall, to actually get better at something.

Fight fire with fire

You have Aspergers. You wish you didn’t. I get that. All of my life, I wished the universe wasn’t trying to keep me down.

Sadly, I never had much of a chance against the universe. But it turns out that the universe wasn’t my problem.

I really wish I had known that I had Aspergers because I could have stood a chance against Aspergers.

Here’s why….  focus + time. Don’t let them both pass you by. Don’t try to fight it.

No, you might not be super smart, or have a photographic memory or the ability to play music just from hearing it one time… but you do have a gift.

And just like the mind readers in comic books, that need to learn how to use their gifts so that it can go from feeling like a curse to feeling like a super power… you are going to have to learn it as well.

And it will take time. And it will take hard work.

But that’s the thing. It’s within your control. Not the universe. Not fate. And certainly not Aspergers.

It’s yours to own.

Don’t wait 20 years to look back and think of what you could have accomplished with all of that wasted time.

Look ahead 20 years and imagine all of the things you can accomplish… if you focus.

Obsess over something and do it.

Don’t waste time now and you’ll have no regrets later.

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An incomplete task will likely result in an autism meltdown

By on April 27, 2012 in Autism

My son, Cameron, has never done well with leaving something unfinished… it’s especially evident when it comes to video games. It’s for this reason that we try to steer him away from games that can take weeks or months to finish. Certain Mario games consisting of 8 worlds comes to mind.

Asking him to stop in the middle of playing a game, painting a picture, playing with his toys, trying to read, watching a movie… just about any of these things can cause him to have a complete meltdown.

Sometimes it’s not even something that he particularly enjoys… but if his mind is focused on it, he will not cope well with having to leave it before he has a chance to finish what he started.

It’s not always a complete meltdown… sometimes it’s a mood switch. Where he’s been doing great all day, gets interrupted this one time and then, for the rest of the day, he’s moody, grumpy or just plain… not himself.

These are the methods we’ve used to avoid this from happening.

incompleteMake sure it ends

Simple enough right? But this is the best method, obviously, that we’ve found to ensure that there is no issue.

This means that art projects are short, or at least, will never take longer than the time allotted. Movies are played through to completion and that video games are only about an hour long.

The Mario Party games are perfect for this, or racing games. He can start and finish a game in about an hour.

Structure and/or Repetition

One good method is to simply know what to expect each day. This is especially effective at school… when one class ends and another begins, he knows that his time is up even if he’s not done.

It doesn’t affect him as much because it’s how it always is. The same thing, every time.

It’s a bit like my next point, except without having to know how long minutes or hours are.

5 minute warnings

This one varies, since it doesn’t always have to be 5 minutes but essentially, we tell Cameron that his time is almost up, to finish what he’s doing and to get ready to do something else.

This gives him the time to wrap up and put what ever finishing touches he needs on something to help him walk away from it without having a meltdown.

It doesn’t always work out perfectly and he’ll either need a little extra time or we’ll just have to deal with the meltdown but for the most part, this helps him get ready for what’s coming.

Timer

Most children have no idea how long 5 minutes is… which is largely due to our own inconsistencies. Since we’re often doing things ourselves, 5 minutes can sometimes be 6, 8, 10… sometimes even 15 minutes. This can be very confusing and frustrating sometimes.

Cameron does really well now, not really caring just how long 5 minutes is… but at first we had to be pretty rigid.

We’d do this with a timer… having a smart phone with a timer on it is very handy.

When he heard the timer ring, he knew that his time was up. It would sometimes still be a problem since he might not feel he is finished though… again, sometimes having to spare a few more minutes or deal with the meltdown.

Does it ever get better?

Well, Cameron is only 6 so I can’t say for certain if he’ll ever be able to cope well with it… everyone is different after all.

But so far, it’s very encouraging because he copes a whole lot better than he did when he was younger. Which of course, is very much reflective of age just as much as autism. Children in general don’t handle that sort of thing well.

We still have meltdowns to deal with sometimes, particularly if it’s something he really enjoys like a video game or a new movie… but it’s far less frequent now than it was in the past.

We don’t need to use timers anymore since “5 minutes” is generally good enough for him to know that he needs to start finishing up.

Personally, I don’t like having to leave work while I’m in the middle of something I really want/need to get finished. I don’t have a meltdown by any means but it’s hard on me. So I’d imagine, if my son is anything like me, he’ll never fully get over it either.

But he is doing great and has come so far already so I am confident that he’ll manage just fine with dealing with things like that in the future.

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