Tag Archives | communication

Freeing the soul that is locked within

By on January 24, 2011 in Autism, Autism Awareness

Low functioning (severe) individuals with Autism are often referred to as being trapped in their own world or being in a body that simply doesn’t work the way it should. There is a new movie (Wretches & Jabberers) coming out that I think will illustrate this concept beautifully.

Most recently, there was a news article referring to how Autistics really do understand you even if they can not speak and you do not get a response. Honestly, Carly Fleischmann probably is the best example of this to date… a young girl that was unable to speak for most of her life until she approached a computer keyboard and began to type out full, coherent sentences.

There is a lot going on here that I think a lot of different people easily forget. Here is how I see the forgetting being broken down:

  1. Parents of children that have Autism yet are still higher functioning, or even with Aspergers, often forget that other parents have children that hurt themselves, others, have yet to be toilet trained or even speak.
  2. Individuals with Autism/Aspergers see it as a gift as well as a curse, sometimes simply as a gift.. I’ve even seen some go so far as to think they’re superior from everyone else. To these people, many times, they see no reason to do anything at all except welcome the gift for what it is. This can make some parents quite upset when their children are so bad off that they see it as nothing but a curse.
  3. Parents of the low functioning children sometimes forget that their children is likely very aware of what they say and do around them. Often talking to others as if they’re not there, when they are… getting upset at them for something beyond their control, for saying hurtful things out of frustration… they forget that they wouldn’t say these things if their child was listening… they are listening.

There are a couple of key points to all of this that I think are often missed as well, not on purpose and certainly not at all times… but from time to time, we let it slip out of our memories and thoughts.

As difficult as it is to have a special needs child, it is still just as hard or even harder to be that child.

We often get wrapped up in the stress that we forget our child is even a human being.. not literally, but figuratively. We forget their thoughts, emotions and own frustrations are in there… we don’t see it or hear it, but they’re there. They’re in a prison right there beside you and they can’t get out. You think you have it hard that they won’t give you a hug? Imagine how hard it is that they so wish they could… but can’t.

There could be brilliance struggling to get out.

I often say “No matter how severe, never underestimate a person with Autism. There could be brilliance struggling to get out.” I was corrected that I should say “is” as opposed to “could be” but again, we have to be realistic… not every person with Autism is brilliant. They are certainly wonderful, beautiful people with unlimited potential… but not everyone is brilliant, Autism or not.

But in the very least, there is an average person in there… brilliant or not, they’re amazing in their own right. Don’t expect there to be the next Einstein or Mozart in there that you have to release… they’re probably not. But they are still your children.. your perfect children.

And they don’t need the pressure of greatness pressed on them. They simply need to just be. They simply need to have your acceptance, your understanding and most of all, for you to never forget who they are. They’re in there.

This is where I feel there needs to be a cure.

Not necessarily a way to strip away Autism or even prevent it, but for right now, we need a cure to break the shell.. to let these children (and adults too!!) be able to not only speak but express emotions, function properly and become independent.

I don’t care what vaccines might do, or what living close to a highway may cause… all of those studies talk about risk. As in, percentage points. None of those studies mean that you do X and you’ll have a 0% chance of having a child with Autism. And until that does come to be, we need to be focusing on getting those low functioning individuals talking.

Cure the curse, leave the gift.

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What you say and what they hear may not be the same thing

By on January 15, 2011 in Autism Communication

I’ve noticed for quite some time how my children often repeat what they hear in a movie or television show but what they say isn’t an exactly copy.

For example, in the Cars movie, one character says “What? did I forget to wipe my mud flaps?” to which Cameron immediately parrots “I think I wipe my butt wraps”.

Another instance is in a Mario Brothers game where Mario cries “help’a me!” and Cameron laughs and says “trampoline!”

There are many many examples I could give. This has been a common thing for him all of his speaking life but I never saw much point in blogging about until a mom on Twitter (@Calormom) commented that her son never answered the question “How was school today?”

Unfortunately, I don’t talk to very many parents that get an answer to the school question. Not very many children with Autism ever answer it.

This mom said that she had asked a teacher from the school and the teacher said that it’s likely that her son doesn’t understand her, or the question or just doesn’t want to answer.

This got her thinking and rather sad that her son doesn’t understand her. Understandable… I felt the same when Cameron would never tell me about his day too.

Miscommunication

Did he say what he heard?

Keeping in mind his strange inability to say what he had just heard from the television, I got to wondering what he might be hearing when I am talking to him. If I talk at regular speed about mud flaps… is he hearing “butt wraps” ??

Here is what I did when I realized that he wasn’t properly interpreting what it was that I was saying.

  1. Consciously slow down your talking.
    In the day and age of instant messaging, texting and so forth, we have even begun to talk faster without realizing it. Many of us really aren’t that good at it either. We slur things together, we abbreviate words we shouldn’t and we mumble stuff out more often than we realize.
  2. This brings me to speaking more clearly.
    I’ve had a few family members tell me how “funny” or “strange” I sound sometimes… which is sad because I’m sounding the way that an English speaking person is supposed to sound. However, our language has become so perverted these days, in the words we use and the way we say them, that people look at you strange for speaking properly and clearly.
    So be it, let them laugh… your child will understand you better… that is what is important.
  3. Try rephrasing the question.
    Children only have a limited vocabulary as it is, so don’t expect them to understand every word you say… and certainly combinations of words might throw them off as well even if they know what the words mean individually. If you ask what they did in class, but they only know of the place they go to as school… they might not have an answer for you.
  4. Talking about school, use words/phrases that the school uses.
    My son’s class has story time, but they don’t call it story time. They call it circle time. If I ask him what they did for story time, he will have no idea what I’m talking about. If he’s feeling confident, he may tell me that he didn’t have story time… even though he did have circle time.. but most likely, especially having Autism, that confidence will not be there and he’ll just have no answer for me at all.
  5. Emotions are an easier memory to recall than facts.
    My son has come a long way so now he can recall facts much better than when we first started but consider this… he can tell me every detail about what happened in a story or movie at school, but can’t tell me what the title was or who was in it.
    The reason he can do that is that he’s mostly recalling his emotions… how exciting the story was, how sad it was, how happy he felt… and those emotions have trapped the story within them.
    When Cameron first began talking, I would ask what story his teacher read, or what movie he saw and be met with a blank look..  he didn’t feel comfortable telling me that he didn’t know. However, if I asked if they had a good story for circle time, he’d answer yes or no. From there, I could prod for more information because I had him talking.
  6. Like all things, start slow.
    “How was your day?” is far too broad and confusing. Start with something like “did you do numbers today?” or “did you eat your lunch?”
    Yes or No questions are a great place to start and as I said, use words/phrases the child already knows. The less confused they are, the more likely they’ll talk. In time they’ll become accustomed to the questions and the type of information that you’re looking for. That’s when your child will start to catch on that “how was your day?” is just another way of asking all of those questions at once… but they have to work their way up to that point.

Don’t be discouraged if your child doesn’t understand you… they haven’t understood you for their entire lives, but they’re learning. This is no different. Also, it happens with all children, just maybe not to the same extent as a child with Autism.

You just have to keep all of these things in your mind, remember not to get frustrated when you don’t get an answer and to understand what may be going through your child’s mind.

Your child loves you and does want to tell you… they just need a little help from you.

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Communication, breaking it down

By on November 1, 2010 in Autism Communication

One of the key characteristics of Autism is lack of communication skills but I would argue that it’s more of a communication break down. What that means is that even the most severely low functioning Autistics do have communication skills but suffer from severe communication break downs between themselves and the world around them.

What is the difference? I’m glad you asked!

failure to communicate

Communication Breakdown

A break down in communication is described as two or more individuals or groups being unable to understand each other due to differing styles or methods of communication.

Lacking communication skills implies that a person simply can not communicate at all, with anyone or anything. If you spend a day with anyone that has Autism, regardless of the severity, you know this simply isn’t true.

Let’s break this down further, because those with Autism have symptoms in a very wide range of severity and complexity, I can’t possibly cover every different variation I’ve heard of or encountered, but I hope to give you some idea of what is going on.

For many ‘low functioning’ Autistics, they are communicating with their environment in ways that we simply can not understand. The banging they do, the flapping they do, the circles they spin in… these are all ways in which they’re taking in their environment. Hitting a person, not hugging, not looking in the eye… these are forms of communication that we choose to think of as not communicating at all.

Inside, that person is trying to tell you that they need you, they love you but they can’t get it out to you in the way that you understand it. It’s a break down in communication.

Likewise, you are trying to hug them or speak to them in certain tones or you make a face at them and they don’t understand. They don’t get the sarcasm or inflection, or they don’t notice the eyes rolling that you’re doing and again, you have a break down in communication. Something you say light heartedly may be taken as very seriously, even negatively and they lash out and you are left wondering why they have these random temper tantrums.

What you need to realize is that sometimes it goes way beyond this simple break down into a whole other level of mixed signals. For example, some people with Autism may be seeing colours as you speak. Some of them may taste the sounds or even smell them. Your whispers may come across as nails on a chalk board or your yelling may come across as a fog horn inches from their ears.

Try to imagine an alien life form that comes to Earth and talks in clicks and clucks, just sounds coming from their mouths, and then when you talk they see a blinding light and their ears feel like they’re on fire.

Would you both be lacking communication skills or would there simply be a break down in communication that is very difficult to over come?

As with all things Autism, as I always say, nothing is the same for all Autistics, but this should give you a good idea of just how crazy it can be for one with Autism to try to communicate.

It’s important to remember that they can communicate. They can have the desire to tell you all the things that you want to hear. They simply are unable to get it to you in a way you’d understand. And when they freak out for what you think is a nice gesture or seems totally random, perhaps it’s not.

Unfortunately this won’t solve many problems for you, but perhaps answer some questions.

I write this today, the day of conflicting awareness events. One being Communication Shutdown and the other being Autism Shout Out (ASDay for short), because even though they may be two opposite sides of a coin, they are opposite sides of the same coin. They both have the same aim and both hope to have the same outcome.

It’s all about communication. Not the lack of it but the break down of it. Whether you stop talking or talk louder, you are communicating and that’s a very powerful thing.

Don’t take it for granted when so many can’t find a way to do it the way we do.

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Communication Shutdown, Why I’ll be online Nov 1st.

By on October 28, 2010 in Autism Awareness

Ok so, I’ve argued with myself about whether or not I’d ever even discuss this topic, much less write about it but today I’ve volunteered my time to be a part of a 24 hour “shout out” on November 1st. It’s for this reason that I think it’s only fair that I explain why. Also, doing so just days before the actual day will help with anyone wondering if I am discussing this just for search engine traffic or so forth.

The Premise

no communication

No Communcating Nov 1st

The idea behind this ‘event’ is that people should not use Facebook or Twitter for the entire day of November 1st in an attempt to experience what it is like to lack the communication ability of those with Autism.

You visit https://communicationshutdown.org/ and donate some money, they send you a program that you install and it will update your Facebook and Twitter accounts to announce that you are not going to be there that day in the name of Autism.

You spread awareness, you experience the lack of communication, someone gets the donation, the world is happy.

Speaking for those that can not speak for themselves

The whole idea of Autism Awareness and Advocacy is that we speak out for those people/children that can not speak for themselves. As such, it makes very little sense to silence ourselves for them.

Also, I’m not even Autistic but even I feel it’s pretty insulting to think that not visiting a couple of websites could ever give you any insight into what it’s like to have Autism. That’s like saying that because you were in chess club, you know what it’s like for children in bad neighbouurhoods to get mixed up in violent gangs.

Not saying anything is the new “what’s your bra colour”

Remember last year when Facebook women started putting their bra colour into their status as a fun little “shhh… don’t tell the boys” game? And after most said it was childish and stupid, they attached the Breast Cancer Awareness mantra to it and suddenly it became a worthy cause to participate in.

The problem was that most of the guys and even a very large number of girls simply never got the message. The problem with “shhh” is that noone knows why you’re “shhhh”ing unless they ask and really, who cares enough to ask? No one.

So this communication shut down will very likely become the next viral campaign that totally went by most people’s attention spans without a second glance until some other day when they caught a news article or someone says something off handed and they go “oh! That’s what that was about?”

Flawed target audience

If this is truly aimed at giving people a taste of what it is like to have Autism, why would I need this? My son has Autism. Many of the people being asked to participate have Autism themselves. Do we really need this exercise to experience it?

It seems to me that this needs to be focused on the general public more than those of us that are already advocates or that already have Autism. It’s a great starting point as we can reach out to more people than they could alone but obviously the approach was flawed. We should have been given tools (banners, ads, market material, links) to prompt readers rather than asking us to just donate like any other person.

Donation Information

So the site lists a rather impressive list of charities/organizations which will be receiving these donations… it even promises that your donation will go to a place that is in your country. This is impressive. View partners.

What is not impressive is that we have no idea who the people are putting this on, nor how accountable they will be. Will we see records and breakdowns of where the money went? Will we get autobiographies of those involved? Do we know what will be funded with the money?

Furthermore, why can’t we just donate to the charity/organization directly and keep on Tweeting and Facebooking? Facebooking? Is that right?

Also, why can’t we just have the program to update our accounts and post about our attempts at Autism Awareness without having to donate? What if I want to participate because it’s a worthy cause and want to get the experience but can’t afford money to donate because we are living with Autism ourselves and could probably use that donation money for our own family?

The Alternative

Some blogs are pushing for an explosion of shout outs, a total opposite to a communication shutdown. They’ve even come up with some tags #AutismShoutOut to use on Twitter to show your support.

To me this makes a lot more sense but shouldn’t this be done in April? Autism Awareness month? Why is this being done in November anyway?

I don’t think I can endorse this approach either really, since it will likely get quite annoying and/or repetitive after the first few hours. But it sure does beat not saying anything. Cause no one will know why and you can’t tell them!

What I am doing

As I said in the first paragraph, I have decided to participate in “Communicate and Educate Speak out and Speak Loudly” 24 hour chat held by http://thecoffeeklatch.com/ on twitter: @TheCoffeeKlatch

I will be co-moderating from the 4pm to 5pm EST hour, they’ve organized that there will be moderators for an entire 24 hour period from 9am to 9am. This means that information, questions, advice, myths, stories and more will be shared for the entire duration.

If this isn’t the opposite to not communicating for 24 hours, I don’t know what is.

And so, I’ve decided that since I agreed to become a part of it, I should explain why I made the decision. Not that I owe it to anyone, but that I feel this decision could raise the question.

My suggestion for you?

I have three.

There’s really nothing wrong with taking part in the communication shut down. It will raise awareness, they will get donations to good charities. If you wish to do it, good on you. You’re doing something great for the Autism Community.

There’s nothing wrong with not taking part in it either. There’s nothing wrong with seeing flaws in the plan and doing the exact opposite. Speak out, speak loud and speak proud. Raise awareness as you see fit. If you do wish to take part in the chat, in which I will be a part of, simply add #tck to your tweets or use their custom chat room which will help you streamline the conversation much easier: http://tweetchat.com/room/tck

Finally, there’s nothing wrong with just going about your day as you always have. Talk Autism, talk sports, family.. anything and everything. You are involved already, you’re already doing your part. Feel proud in that. You should.

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The Two Videos That Will Change The Way You Look At Autism Forever

By on July 27, 2010 in Autism

Today’s been quite the day for revelations for me… it happens rather often when you become a parent of a child with Autism, learning new stuff all along the way. It happened when I saw the Temple Grandin movie and it happened again today when I watched not one, but 2 videos.

These two videos are rather similar yet depict 2 different people… both of them, women with Autism that are unable to speak. They’re not 4 or 5 either, one is an adult and the other is a teen. They both display the normal severe Autistic traits such as arm flapping, screaming, fits of rage, repetitive motions and so forth and both of them are truly brilliant.

Both of these women found their ‘voices’ when they discovered computer programs that would speak for them when they typed and they typed real thoughts, real feelings, real expressions and do so remarkably well… better than most people I know in fact.

What you will see is an example of what you and I perceive, their Autistic traits and then, if you have the patience to continue watching the videos, you will then see them explain exactly what you were actually seeing.. what was happening in their mind, what was happening to make them do what they do.

And hopefully, like myself, you’ll have a revelation… you see, like most everyone else, I thought that severe Autistics were “trapped in their own world” or unable to cope…  mostly, unable to communicate.

But having seen these videos, I don’t think those things anymore. Well, watch the videos and hopefully you’ll see what I mean.

Carly’s Voice

In My Language

I would love to hear from you, how did these affect you? Has this changed your perspective? Does it give you (more) hope that there’s brilliance “trapped” inside someone you love with Autism?

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