Tag Archives | communication

A funny thing happened on the way to an autism discussion

By on April 6, 2012 in Autism

I have two boys, one with autism and one without. I happen to think of them equally most of the time and I tend to also talk about them equally.

This sometimes leads to some confusion when I tell everyone that “my son did” something.

And it doesn’t mater what I say he did… it could be the most polar opposite thing that an autistic would do and someone will remark about how their autistic child does that too.

Seeing autism where there is none

These are usually parents but even sometimes autistics themselves who will relate to my younger son, the one without autism. Sometimes it’s understandable, as he may be doing something characteristically autistic, such as shying away from others/crowds, having a meltdown… these things sometimes make me wonder too. Truth is, he’s clearly not autistic. It wouldn’t take you more than 5 minutes with him to see that.

At first it was kinda funny and I’d be sure to explain that I’m not talking about my autistic son… but then it happened more and more until finally I was having full conversations with people about how much this happens to other people too.

Sometimes the mistake is understandable, sometimes it’s a stretch and other times it’s like… there’s just no way.

Setting up the assumption

In a way, it’s a bit leading to begin with… I mean, you’re in the autism community, talking to others in the autism community, in their mind, they’re already preparing for an autism discussion. It’s hard to switch modes once you’re in that frame of mind.

My name in most places is autismfather. So when someone sees my name, they assume that I’ll be talking about an autistic kid. It’s pretty much a given.

This can “direct” the conversation right from the get go. I get that. Still though, I can try as hard as I can to make it clear that it’s not my autistic child that I’m referring to and still get a response about how they can relate due to their own autism situation.

Cameron and Tyler

Cameron and Tyler

Not that I’m complaining

The thing I’ve come to realize is that it’s not really a bad thing, it’s a great thing. The more a typical child can be mistaken for an autistic child, the better. Because it means that the lines are blurring. Even if it is still mostly within the autism community rather than the rest of society.

It’s still a bit comforting to know that my children’t aren’t so different. That I can talk about either, in most situations, and no one will be able to tell if I’m referring to the one that has autism or the one who doesn’t.

Is that how it is for everyone? No, most certainly not. Some people have children that are unable to speak or “function” as would be expected for their age… and so the signs are much more pronounced.

But for me, it’s great to know that Cameron is doing so well that I could mention something that he or his brother are doing and most people wouldn’t be able to tell which son I’m talking about.

It doesn’t make Cameron any less autistic nor does it make Tyler any more autistic, they’re still very different from each other and still both with their respective strengths and weaknesses… but there’s enough of a similarity there that people are unable to just know which one I’m talking about.

And in a way, that gives me hope for the future. For both of them.

Because Cameron is far better off if he can be confused for his brother and, even though some people that think negatively towards autism may disagree, I feel that Tyler is actually better off if there are some ways that he can be confused for his brother too.

Feel free to think he has autism. Feel free to see autism where there is none. I don’t mind at all!

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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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Different Kinds of Special [Review]

By on January 23, 2012 in Autism

I received the book “Different Kinds of Special” this week, written by author and poet Donna Carol Koffman. She is the grandmother of a little boy named Reese that has autism and it is for him that she writes this… or at least, he was the inspiration.

As the description says: “In this book, Donna gives Reese a voice to teach young children empathic understanding, acceptance and inclusion.”

Also, an interesting bit of trivia for those of you that have or get this book… the illustrations are done by Breanne Biggar but, one page, where the children are drawing on a sidewalk, you will see the wonderful art work of a young man named Devin, who has Aspergers. He was 6 when he made those drawings and you can read a bit about him at the back of the book.

different kinds of specialThe Book

The book is about a bunch of children all going to the park to play… but none of the children are the same as each other. This book explains very simply yet very clearly just how different each person can be from each other. Starting with the obvious, such as hair colour, height, weight and so forth, the book eventually gets into more distinct differences such as how some people are unable to walk (wheelchair) or communicate (talk)

The Story

While there really isn’t much of a story, it does take you along on a bit of a journey through the park. It’s kind of like people watching, but for children. As you go through it, you really feel like a child standing there while your mom or dad talks to you about what you see. And that’s how I felt, and I’m a dad. To invoke that kind of feeling in a reader means that the message is being delivered very well.

My Review

I read the book by myself while my wife read the book with my son Cameron. So I’ll give you an idea of what we both think.

For me, I found it quite intriguing that autism is never actually mentioned. It’s also quite brilliant, in that it’s just another one way that everyone is different. So rather than single out any specific disorder or ailment, you’re left to fill in the blanks as you read about those that can not speak, see, hear, walk and so on. These children on the pages all have different strengths, weakness, colours, sizes…  and they all have smiles.

I can picture my son in those illustrations just as I can picture other children that I’ve met through my life or that I know right now. They can all fit into these pages.

More so than that, I can see myself in many of the pages. As you read about how some children are shy, some aren’t, some don’t like to do some things, other do…  and some children cry because of how hard it is to make other people understand them… you get it. Both as having memories of that but also in understanding where her grandson as well as our own children are coming from.

My wife said:

The book gave a good sense of accepting those who have differences and allowed Cameron the opportunity to look passed himself and see others and accept and want to help them. We were able to talk about the book and explore ways to make people in our lives feel more welcome and loved even though they have differences. 

Together, we both felt the only criticism we could make is that it’s a bit of a dry read, in that there is no story and comparing differences makes for a bit of repetition. Our four year old lost interest half way through. Cameron, however, did not.

But it was never meant to be a story and no one will ever fault a four year old for not grasping the differences of all people. So while it may not make the best bedtime book ever, it does make for a wonderful story time book that really helps to reinforce acceptance within us all.

If more people read this book to their children, there would be far less bullying in the world.

You can buy Different Kinds of Special from Amazon.com for just $19.95 in paperback and read more about the book at http://lostforwordspress.com/

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Humans are social beings. So if you’re not social, what are you?

By on January 16, 2012 in Autism

Taken from Wikipedia:

Humans are social beings. In comparisons with animalia, humans are regarded like the primates for their social qualities. But beyond any other creature, humans are adept at utilizing systems of communication for self-expression, the exchange of ideas, and organization, and as such have created complex social structures composed of many cooperating and competing groups. Human groups range from families to nations. Social interactions between humans have established an extremely wide variety of values, social norms, and rituals, which together form the basis of human society.

This makes me wonder… what about the people who are not adept at utilizing those systems of communication for self-expression? Is this why some people instinctively see special needs people as less than human somehow? Is this why, when a person is unable to use those systems, to communicate or demonstrate self-expression, they are thought to be “in their own world?”

It sounds a little harsh, to think that, if a person isn’t social, that society would view them as “less than human”… but really, this shouldn’t be new to anyone. Aristotle thought this way too.

“Man is by nature a social animal; an individual who is unsocial naturally and not accidentally is either beneath our notice or more than human. Society is something that precedes the individual. Anyone who either cannot lead the common life or is so self-sufficient as not to need to, and therefore does not partake of society, is either a beast or a god. ” 
― Aristotle

Granted, he included the “more than human” but that’s likely in reference to the savants or prodigies that lock themselves away to work tirelessly on what ever it is that they do.

I mean… a beast or a god? Really?

how to win friends

No wonder this sells so well!

Says Who?

Personally, I have always questioned: If everyone is different, why would everyone have to have friends?

Think about it. Every single person is different. All seven billion. And yet poets and story tellers continue to tell you that everyone needs someone to love and everyone has to have friends.

Why?

Why can’t a person be ok with not having friends? Where did the term “hermit” come from if there aren’t people out there who prefer to be left alone?

Feeling Lonely

Everyone feels lonely sometimes. People that have more friends than they can count can feel lonely sometimes. Is it more likely for a person that has no friends? Sure, but perhaps there’s a reason for that besides the fact that they are alone.

Think about it… why would a person who prefers to be alone be lonely because they are alone? It doesn’t make sense.

In my past, when I had no friends because I was working so hard, I felt very lonely and very depressed. But it wasn’t because I had no friends.

I felt that way because I was conditioned to. Every poem or story I read, every movie I saw, every person I talked to would tell me that I had to have friends…. more so, I had to have love.

Not one person or piece of entertainment told me that it was ok to be alone. In the movies, the hermits would eventually find a family or a place to live and “finally be happy” with others. The others would either eventually commit suicide or “remain alone for the rest of their days”…  ugh.

Be Yourself

Other than highschool peers, people will tell you to be yourself. That you’re unique. You’re different. There isn’t another person out there like you.

But you have to have friends, like everyone else, because everyone else does… or else you’re “beneath our notice”.

It’s very contradicting and it’s very belittling and it’s very confusing.

Sure, a lot of people without friends do not choose for it to be that way and therefore, have every right to feel lonely and a little down. But some people want to be that way… they eventually find themselves depressed and aren’t sure why.

In either case, don’t listen to Aristotle… don’t listen to the media, entertainment or poets… it’s ok to have no friends. It might be temporary. It might not. Depending on what you want.

But be yourself.

Who knows, you may think you want to be alone only to find that you really don’t… once you are confident enough to be yourself… confidence attracts… friends!

But you are still very much human, friends or not… love or not. Want it, don’t want it… it doesn’t matter, just so long as you are yourself. Friends and love, they’re out there. I won’t think any less of you for wanting them or not wanting them.

You don’t have to have friends to be happy but it certainly helps to be happy if you want to have friends.

So either way… be happy for being you.

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Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

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