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Understanding and acceptance means listening, even if you disagree

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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I have Aspergers – Part 1: Who I am

I started my autism blog with a very specific focus, which is why I named it “Autism From a Father’s Point of View.” It was to be a place for me to write about my son, Cameron, his growth with autism and what I’ve learned along the way.

It was never meant to be about me.

But things have changed.

I now have an official diagnosis.

I have Aspergers.

In Retrospect

autism tag cloudShortly after tucking our boys into bed one night, my wife and I talked about our son’s traits and which were due to him having autism and which were due to him just being an average little boy.

During a lull in the conversation, my wife said to me: “You know, that sounds a lot like the way you are” and it hit me like a ton of bricks.

I have autism!

In that instant, I remembered events from when I was 2 and hurt myself or was scared, times when I was bullied, times where I said or did something wrong and the guilt still haunts me, times where I smelled or tasted or felt something so strong that I couldn’t stand it, all the times I’ve beat myself up for not being more social with people, all the years I stayed in my room, by myself rather than be with people, the way I’ve never really fit in with my own family, the way I’ve obsessed over things… my entire life hit me in a flash.

It was at that point, a couple of years ago now, that I became a “self diagnosed autistic” but I would never dare tell anyone. Not because I was afraid of what people might think but more so because I could never tell someone something what I was not absolutely certain of.

Who I am

I am the father of two wonderful children and a really great wife. My oldest son has autism. And thus, this blog was born.

That’s who I am.

Even though I was totally convinced of that and content in that knowledge, I still had lingering questions. Did autism explain so many events and experiences in my life that still stick in my mind as clearly as though they had happened just a short time ago?

It sure seemed to fit. But could I tell anyone?

If I became a “self diagnosed autistic”…
Would it define who I am?
What if I was wrong?
What if I got a diagnosis back and it said I did not have autism?
What if it did?
Would the diagnosis define who I am?
Would it reshape, in my mind, who I’ve been all along?
Would it make any difference at all?
Would it change who I am in the eyes of others?

And so I kept it to myself… well, to myself and my wife. She was the first to make the connection, after all. Which helps… having someone to talk to about it.

But for a long time, or so it felt anyway, I kept it to myself. I think it felt like a long time because I have been so active in the autism community. Often speaking up, often speaking out… and holding back the one thing that I felt should be the most important thing to share.

I saw other self diagnosed autistics speaking up all the time.

Why couldn’t I?

Because I wasn’t sure who I was. I felt it, but I couldn’t be sure.

Then came the diagnosis.

Now I know who I am.

Will my message change?

Now that I know who I am, or at least, am more confident about it now, will it change what I write or how I write?

Well, I already write about understanding and acceptance (I have a Facebook fanpage and an ebook by that name!) and have always written from my heart, how I’ve always felt and believed… so no, I don’t see how anything would ever change.

I’ve always written as though I had autism anyway, because I try to be as true to my son as I can… pushing for acceptance, community unity… and the good as well as the bad of autism.

My blog will retain it’s title. This is about experiences between a father and son. Always has been, always will be.

My diagnosis cements many of the things I’ve believed, it opens up my eyes in a lot of ways that I’m not sure I could ever truly explain but at the same time… it doesn’t change anything.

I’ve always been me. I have always said and written what I truly want to share.

Will it change how others see me? Treat me? Think of me?

Only time will tell.

Tomorrow:

Part 2 – Getting the Diagnosis.

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A label by any other name smells just as… 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 awareness

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!

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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