Archive | April, 2012

A label by any other name smells just as… autism

By on April 5, 2012 in Autism

Do you like the title of this post? Is it catchy? Humorous? Weird? Clever?

Well, maybe not clever. The point is though, that the title of this post kind of hints at what you might expect in this post but it really doesn’t give you a great idea of what it really contains. It’s just a title. It’s not the whole story.

By now I’m sure you have it figured out, I’ve hopefully made the point.. right? A label doesn’t tell the story. A label is just a title. Right?

Wow, this was a short post.

Wait! I have more.

Diagnosis Denial

I’ve heard from some people that suspect that their child could have autism, or at least some autism-like traits… and they’re afraid to bring it up with their doctor. They don’t want a diagnosis because they don’t want their child to have the label for the rest of their lives.

Then there are those who do get the diagnosis for their child and refuse to believe it. They absolutely will not believe that their child must bare this label for the rest of their lives. They try to pretend that the diagnosis never happened and simply continue to raise their child as they would have anyway… forgoing advice, help and services.

Denial is far more common than you might think and while understandable, it can be harmful. There’s an expression: “It is easier to build up a child than it is to repair an adult.”

What that means is that early intervention can go a long way to helping your child progress, grow and develop the skills they need to be successful and independent adults. Any delay can hinder that progress. One year missed in the early stages can take several years to repair later in life. People… ALL PEOPLE… develop in their early years and what is established early is what makes up their core personality later in life.

Hate Autism? Love Autism?

There have been a lot of discussions (quite heated actually) around the autism community because some parents are claiming to hate autism, and really… I can’t blame them. For some people, their child will likely live in a home for the rest of their lives. They’ll be bullied, they’ll have no job, no family… they’ll miss out on a lot in life.

Still though, in this case, I think it’s a label issue more than anything.

I look at this way: when a child misbehaves or does something wrong, “experts” and books teach us that as parents, we should redirect or encourage proper behavior… but if need be, point out how what they did was bad, not that they were bad. Or to put it another way, never tell your child they are bad, but rather that the action they took was wrong.

In this way, as an example, hitting is bad, not the child that did the hitting.

To go back to autism, I think the parents hate that their children can not speak, can not integrate into society, can not do all of the things the parent wishes they could do… due to the autism. They hate the barriers, the severity… not the actual autism itself.

They hate that they haven’t found a way to communicate. Sure Carly Fleischmann (go buy her book by the way!) found a way to communicate despite being unable to speak… but to a parent that has yet to find a way with their own child, they’ll hate it.

They’ll hate that they can’t communicate. They’ll say that they hate autism… it’s an emotional response.

It doesn’t make it right, any more than telling your child that they’re bad when they do a bad thing. The experts are right. It is better to focus on the action than the person. But as an emotional response… it’s understandable, even if not really right.

Labels… sometimes they get mixed up in the heat of the moment.

Person first language

I thought I had finished with this topic when I wrote the last word on person first language… I still share the link to that post with people just about every day. That’s because there are people telling me, almost every day, to refer to autistics one way or another. (some people prefer ‘autistic’ while some people prefer ‘person with autism’)

The fact is, they’re both a label by another name. The person is just as sweet. (notice I didn’t say smell? For those of you that don’t know the reference from the original quote, sorry)

Yes, there is a lot of power in words and choosing which label you want to use does have an impact on how you think about a person. Still though, it doesn’t have an impact on who that person is.

You’ve labeled a person. They’re still a person that doesn’t really reflect the label at all.

I know, some people would and likely will argue with me that it does reflect the person, but going back to the beginning of this post, a title hints but does not tell you the story.

I know some autistics that don’t care what you call them and have no interest in the autism community or advocating at all. They just live their life as a person who lives their life.

For those people, calling them autistic or a person with autism or lazy or big boned or funny looking or anything else doesn’t really tell you anything about the person at all, does it? Maybe to Sherlock Holmes, but for most people, we wouldn’t have a clue where they’ve lived, the type of people they hang out with, what their favorite food is… nothing.

Insisting on a label, or fighting over a label, seems like an odd way to spend your time when you could have been learning the story instead.

A headline

For the most part, I’ve been down playing labels in this post. I don’t want you to think that I am completely dismissing how important they are though. Although, I attribute a lot of that to just how lazy or assuming people are.

The greatest example of this is in the media. I believe we’re all aware of news agencies common practice of “sensationalizing” a headline to grab readers.

I wrote about it in “The truth about how a research study goes from the lab, through the media, to the people” where you can actually see how a story goes from a researcher to the public and just how radically the headline can change over time.

The danger of this, which happens far too often, is that many readers will take the headline and be satisfied with it. They’ll come to conclusions and share it without having ever read the actual story.

This translates into the real world of labels where, when someone says autism, a person might automatically think they know all about a person. They assume that an autistic will be prone to violent meltdowns, they won’t look a person in the eye, they won’t be able to talk properly or at all, they’ll spin around or flap their hands a lot… any number of things.

Find any 5 autistics that you can and you’ll quickly find that these generalizations are just silly. Sure, one or two might do one or two of the things I’ve listed… but more than likely, all 5 will be completely different where none of which do all of those things.

And those are just possible autistic behaviors. That is a far stretch from assuming you know a person.

So yes, labels have their power, because people want to make assumptions based on them. They want to know the story before they know the story.

A label

amazing

Love the shirt!

A label is just a label… it’s a short form reference to an entire story that you have yet to discover.

There’s a whole lot more to The Lord of the Rings than it’s title and there’s a lot more to a person than the title you label them by.

So make sure you use a label properly, use the label you prefer most and most of all… never assume you know the story based on the label.

My son’s label is ‘Amazing’. If you want to know why, you’ll have to get to know him and learn his story.

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This is the problem with acceptance

By on April 4, 2012 in Autism

Yesterday I wrote “This is the problem with awareness” so I think it’s only fair that I flip to the other sign of the coin and write about the problem with acceptance.

Acceptance Paradox

There is this “place” that people can reach when they have total acceptance. It’s a place of knowing who they are and being fine with it.

It’s called the Acceptance Paradox. You can read more about it here: http://www.creativitypost.com/create/the_acceptance_paradox

An excerpt from it, which explains how it goes:

“Instead of defending yourself against your own self-criticisms. You don’t try to build yourself up or fight back. Instead, you do just the opposite: You simply accept the fact that you are broken, imperfect, and defective. You accept your shortcomings with honesty and inner peace. The surprising result is that you can often gain invulnerability when you make yourself completely vulnerable and defenseless.”

PS, try not to read too much into the “broken, imperfect and defective” parts. This was written about humanity in general, not about autism or any other disorder/disability.

Now, in this article and as it is explained is that you make yourself invincible by no longer caring what anyone says about you.. that you accept you for you, for better or worse and you are completely at peace with that.

What I’ve seen of this though, is not always so peaceful and wonderful.

Acceptance vs Unwillingness to Change

I want to talk about etiquette and manners… one of Temple Grandin’s favorite topics.

Taken from http://www.msnbc.msn.com/id/35150832/ns/health-mental_health/:

“The other thing is, teach these kids manners. I was raised in the ‘50s and ‘60s, and manners were drilled into me. I see kids [on the spectrum] today that have no manners. That’s going to hurt them. You can’t punish a child who is acting out because of sensory overload. But it’s unacceptable to see kids throwing things and slapping people. I see kids with Asperger’s [a mild form of autism] who can’t hold a job because they are constantly late. Teach kids to use an alarm clock. This is common sense and sometimes we forget about common sense. Autism is used too much as an excuse for bad behavior.” ~ Temple Grandin

To give a couple of examples:

During a conversation, sometimes an autistic can seem uncaring or rude due to a straight forward or literal response in a conversation. But autistics, like anyone, can learn to “think before you speak”… it may just be a bigger struggle. But that’s not even required so long as a simple apology is offered should those responses actually offend someone.

I’ve found several instances where, instead of an apology or explanation, the response is more so a dismissal of the other person’s feelings… that the person has to just accept the response as it is perceived (rude and uncaring) because the person who said it is autistic. They’re not allowed to be offended, they must have acceptance.

In this scenario, the autistic has acceptance, in that they may be perceived that way but they don’t care. And acceptance from the person they are conversing with in that they have to just not be offended no matter how rude the response may have seemed.

In this form of Acceptance Paradox, there is no real inner peace to be achieved. One person is offended while the other person thinks they should just get used to it.

An apology or explanation is certainly not always warranted… such as for a meltdown. Imagine a gathering at your house and when things get to be too much, sensory overload takes over and someone blows up, makes a scene and leaves. A short while later, they return and the gathering continues.

Is an apology necessary? Well, it shouldn’t be. If people are accepting, they simply know that the person needed a break for a bit. Still though, an apology does go a long way towards increased acceptance.

Imagine the person returns and says “I’m really sorry for earlier… I was just at the end of my rope, needed a minute… I’m ok now. I hope I didn’t disturb the party.” Everyone would be more than accepting… in fact, if anyone there was struggling with accepting such a scene, they’d now be far more apt to accept it now and in the future should it happen again.

Manners… they go a very long way.

Acceptance is Broken

There really should be no limits to acceptance, in a perfect world but really, there are.

This is humanity we’re talking about… autism or not. We all talk before we think, we all get offended sometimes, we all have to say sorry sometimes. And therefore, there are some limits placed on acceptance.

Just like respect, I can respect a person that I disagree with… even one that says or does something that I find to be in poor taste. I still respect them. I still accept them. I just don’t agree with what they said or did. That’s a limitation of my acceptance. Can a person be fully accepting and yet not accepting in certain situations at the same time?

Speaking of respect, it goes both ways. In the earlier example, person A is inadvertently rude to person B… and person B has to just accept it, without an apology? Let’s flip it around. If person B is offended and would like an apology… if there is to be mutual respect and acceptance, isn’t it now up to person A to be accepting?

Sure, person A could still refuse to apologize and insist that person B just be accepting of their unintentional rude ways… but that also means that person A has to now accept that person B is offended, which again, puts you into a paradox. How can you insist that a person accept you for being rude if you accept them for being offended by it?

In this case, acceptance is broken.

paradox

A Paradox

Speaking Personally

If my children offend someone, they say sorry. My children know not to be mean. My children know to say please when they ask for something.

If my children grow up to become bullies, I hope and pray that someone knocks them on their butt and shows them just how wrong it is.

I accept my children for who they are and I know they will do great things with their life. One has autism, one does not. I don’t care, it doesn’t matter. They’re both awesome. And I will do everything in my power to ensure that they know they’re awesome and never let what anyone says ever take that away.

But if either of them is ever lacking in manners, they’ll hear about it.

Because that, I won’t accept.

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This is the problem with awareness

By on April 3, 2012 in Autism

Actually, there’s several issues with awareness but for the sake of this being just a simple blog post, let’s stick with the main problem, as I see it:

Awareness breeds fear.

Childhood Awareness

So what happens when a child becomes aware that there are monsters in the world? Real or fictional doesn’t matter, they’re children.

When a child become aware that monsters exist in tales and bed time stories… they fear them. Can you blame them? They’re monsters. But not all monsters are created equal. It could simply be a “bad man” in the story.

They don’t know what the monsters look like, sound like, feel like…  they just know to be scared.

When a child becomes aware of thunder and lightning, quite often, they will fear it. They don’t know what is making that noise but they know to be scared… because they’re aware.

When a child becomes aware of an aunt that has a mustache… well, you get the idea.

The point is, it’s an instinct that usually doesn’t need to be taught or developed… people fear what they are aware of, but do not understand.

Adult Awareness

The proof speaks for itself through out history with differences in races, sexuality… even geography!

If you were to take all of the movies/stories based on aliens and work out the numbers, I would wager that the ones where aliens are evil and want to kill us all far out weigh the stories where the aliens are friendly and all is good in the universe.

Granted, the evil killing aliens makes for a better story and will earn more money but still, the point is, we fear alien invasion because we’re aware but do not understand.

Some adults learn inner peace and work on just being understanding and accepting before the fact… to practice acceptance before awareness. But the people that can do that are very very rare.

Disability Awareness

It’s funny how far understanding can go really. Do we live in fear of cancer or AIDS? Well, sort of but I wouldn’t say we look down on anyone that we meet that has them. Why is that? They’re deadly diseases. We’re certainly aware of them.

Thanks to some very prominent and effective information campaigns over the years, most people have a pretty basic understanding of them. Cancer is not contagious, it happens or it doesn’t. You get regular checks and do checks yourself and if you catch it early enough, and depending on the type, you could be fine.

AIDS, sexual contagion, use protection… yatta yatta yatta. I won’t bore you. You know this stuff.

Now, take stuff that isn’t a disease. That isn’t deadly. That is… mostly unknown.

This is the stuff that shouldn’t scare anyone. But it does. And why? Because it’s not understood.

Whether it’s Down Syndrome, Autism, ADHD… why would these things cause others to fear the person that has them?

Well, it’s because people are aware of Autism, but they don’t have a clue what it is, what it does or how to recognize it. It’s just… out there. They know it’s out there. Thanks to awareness campaigns.

See the difference? Deadly diseases get information campaigns on the signs, who to talk to, how it affects people… neurological disorders get awareness campaigns. They just tell you it’s out there… the end.

Awareness -> Understanding -> Acceptance

curiosity
I like to think of awareness as the first step. You can’t understand something if you are not even aware of it.

Now that most people are aware of it’s existence, the next step, which is where most of us struggle, is the understanding.

I think it’s time that people moved beyond awareness and stopped being afraid.

The thing is, a lot of people want for society to move straight on to acceptance of those with down syndrome, autism or any other disability and in a perfect world, this would be the ideal.

However, there is a natural path to these things.

First comes awareness, then there is understanding and finally, acceptance.

People are funny creatures like that.

People will fear what they do not understand (but are aware of) and they only accept a situation once they understand it.

That leaves us with the problem… how do we help society to understand?

Because I can assure you that until we figure that out, all this awareness will only result in fear and will only make moving on to acceptance that much more difficult.

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Free eBook for Autism Awareness Day – Autism Understanding and Acceptance!

By on April 2, 2012 in Autism

For today only, April 2nd, Autism Awareness Day, I am going to give you the opportunity to download a copy of my ebook for free!

Autism Understanding and AcceptanceAutism Understanding and Acceptance

Written as an effort to move people beyond simply being aware to where they can truly understand autism, the people and the affect that autism can have on those people, hopefully to a place where there can be, finally, acceptance.

Steve Silberman, of NeuroTribes writes:

It’s full of intelligence, soul, heart, and compassion. It’s a wonderful gift to the community.

My favorite part was this, which is beautiful writing:

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening…. Acceptance is not giving up. Acceptance is not saying something you don’t really believe. Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities. Acceptance is the door that you need to open… step through and close behind you. Move forward with your child, not against your child. Your child can be perfect. All you have to do is believe it. Because they are.

BRAVO!

Get it here!

Now, you too can read this book, free of charge, for today, April 2nd, Autism Awareness Day. Also, I encourage you to share this book with friends and family that may struggling to really “get it”. Perhaps this will help.

Download in the format you need: ePub, MOBI, PDF.

Should you like this book, please encourage others to pick it up. After today, it will no longer be free but it can be purchased for as little as $2.99 (you can name your price from $2.99 to $20 if you want) at:

http://www.leanpub.com/autismfather

All I ask for in return is one of the following:

  • Share this ebook with anyone that you feel may need it
  • If you enjoy this book and have the time, a short review (either on your site or on the leanpub page or in the comments on this page) would be appreciated
  • If you really like this book, any help with encouraging sales (after today) would go a long way to helping me support my own family.

I hope you enjoy the book. Thank you for your interest.

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Autism Awareness Month – Getting Started

By on April 1, 2012 in Autism

So the month has begun… the month to bring Autism Awareness to the world. More so, to go beyond awareness and try to help people understand the people that have autism, help people understand how autism affects those people’s lives and most importantly, why they should want to know more about autism before they it comes time for them to need to know.

To start the month off, I thought I’d start with some straight forward information.

Facts

Blogs

Here are some blogs that I particularly enjoy and find to have very honest, accurate and even bold points of view, where you can and will learn a lot about autism, should you choose to read them.

News

Communities

Autism Understanding and Acceptance

Autism Understanding and Acceptance

My Request To You

I ask that you please take the time to read at least one article/story about autism that comes to you in your travels around the internet during the month of April and share it. Don’t just pick one at random though… pick one that looks like it may really move you or cause you to feel one way or another. Take the time to really read it… even if it’s just that one time.

And if it does move you, for good or bad, just so long as it makes you feel something… share it. Share it with your social media friends/followers… simply because I asked you to.

Please do not share to raise awareness. Everyone has heard of autism by now.

Instead, share to raise understanding. Share to help others be moved as well.

Because if you feel moved, if you feel anything, that means that you’re thinking about the person. It means that you are looking beyond the disorder.

When that happens, as more and more people begin to really understand, we’ll finally begin to see just how silly our notions of “normal” really are and how judging we can be sometimes when someone doesn’t fit that notion.

Only through understanding can there be acceptance. Only through acceptance can we truly be aware.

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