Archive | May, 2011

What to say and not say to a parent that has a child with Autism

I’ve written quite often about how having a child with Autism forces you to have far more patience than you ever thought you could have… but there are still limits. And even though your patience levels can seem limitless for your child, you may find that you don’t have the same tolerances when it comes to others or some of the ignorant things they say, whether innocently intended or not.

There are a few lists out there of things not to say to us parents, but this is more of a list of things not to say or else you may just push us beyond the breaking point. Don’t worry though, I’ll follow it up with some things that I think would actually be nice to say.

do not sayDo not say

  • Your kid just needs proper discipline
  • My kids would never get away with that
  • What made your kid autistic? Was it something you did?
  • You shouldn’t take your kid out if they’re just going to be like that.
  • Your kid doesn’t look autistic
  • Are you sure your kid is autistic?
  • Why would you have more children if there’s a risk they could have autism too?
  • Have you thought about a group home or institution for your child, so that you can go back to having a normal life?
  • Sorry, I don’t really want my child to play with yours.
  • Your kid is defective
  • Your kid will grow out of it, right?
  • Autism? That’s like Rain Man, right?
  • It must be nice to get special funding or special help!
  • I hope my kids don’t end up like yours
  • You need to watch your kids better
  • Maybe you’re just bad parents
  • But all children do that
  • But your kid was so good for me
  • Referring to your child with a nickname such as “rain man” or “stimmer”

Yes, these are actual phrases I’ve heard or have heard second hand (parents told me someone said it to them). Ok, now that your blood is boiling, let’s continue on.

Here are some nicer things to hear.

Do say

  • You’re doing such a great job
  • I don’t know how you are able to do so much
  • Your child is progressing so well, you must be very proud
  • If I can help, just let me know.
  • I don’t know much about it but I’m willing to learn
  • I’ve read some studies, heard the news but I’d love to hear what you think

I’d love to hear from you. What have you heard or what would you like to hear? I’ll update this post with good suggestions.

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Apple packaging, Autism and blogging. Putting it all together.

As I learn more and more about Autism, through the community, educational information and my best instructor, my son… I’ve come to learn what will and won’t overwhelm him before he has the chance to notice it.

A funny thing has happened though, I’ve come to appreciate the simplicity in some things… most notably, Apple’s packaging practices. Not just the box they put their products in but their devices as well. Ipad and Iphone? A big apple logo and one button. The boxes they come in? A picture and a logo. Simple.

When I look at other products, from their rivals Microsoft to cereal boxes, I find so many pictures, colours and information thrown at me that I become overwhelmed myself.

I started thinking to myself, how can I relate this information to my blog?

Simplicity

I have tried a few different designs/themes across several blogs in the last several years, I’ve even had three different designs on this blog alone in the last year. Some were flashy, some were bright…. no matter how much they seemed great looking to me at first, in practice, I’d find that it just didn’t feel right.

I’d use each theme for a while, adding in some posts, playing with some options but it always just felt wrong. And I didn’t know what it was.

As I said, I’ve been learning. And what I’ve learned is that my blog didn’t feel right because it was overwhelming.

It was an Autism blog, that I kept trying to fill with more and more stuff. Animations, pictures, graphics.. fancy stuff!

The truth is, many of us have picked up the practices of our children. We seek out the places and situations that won’t overwhelm our children and in time, we begin to seek that out for ourselves. So when we get to a blog that has too much on it… we get overwhelmed.

Keep it SimpleA nice white site, some black (or almost black) text, a nice clean font, a few splashes of colour as opposed to tons of colour, some separation of information and spaces so they don’t become jumbled… these things make for a great reader experience. They don’t even have to read the first word yet to already feel a sense of ease when they take that first look.

Information

Obviously you don’t want to cut back on information for the sake of making things simpler, but you can help avoid information overload.

When you first start a blog, everything you put on it is important. Categories, blog roll, page list, archives, tag cloud, profile information, and so much more. You fight with yourself trying to sort it all, putting the most important stuff at the top, then re-organizing it, adding more… and so on.

Eventually you end up with a blog that has twitter feeds, facebook badges, social bookmarks at the top and bottom of each post, advertisements, news feeds and other stuff all over the place that not only slows down the site, but your visitors have no idea what is what or where.

The result is that you’ve given them an encyclopedia of information and no index with which to find anything. They load a page, go into information overload and do their best to put blinders on. The only way to find what they’re looking for (your blog post) is to do their best to not look at everything else.

What’s important

You have to realize that the only thing that’s important on your blog is your blog post. If they have trouble finding that, you’re in serious trouble. It should be clear, easy to read and without distractions.

More so than that, try to think of the rest of the items on your blog as tools to compliment your blog posts. Categories, page lists, archives, search box, tag clouds… these things help people to find and sort through your blog posts.

Everything else that you add is extra. That’s not to say that you can’t add them, but keep in mind their purpose. They’re extras. They shouldn’t be bright, flashy, in your face or anything else like that.

Those things will not keep a reader coming back. Your blog posts will.

Don’t go for the brightest, flashiest, most feature rich blog theme you can find and then load up on plugins… you’re only going to overload your reader and you’ll be lucky if they return for a second time… no matter how great the blog post is that attracted them in the first place.

If your blog is an Auism blog, it’s doubly important. Your readers are parents, short on time, eager to learn and share, possibly short on patience and if they’ve been at it a while, possibly easily overhwelmed.

Summary

  • Don’t make it hard for us to read your blog.
  • Remember that we are there to read your blog, not your twitter feed or news feed.
  • Keep the packaging simple, don’t try to dazzle us.
  • Keep the information where the information should be, in your blog posts.
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“May increase the risk of autism” studies versus real scientific research

Weird Science

Autism is still very much a mystery, I’m fairly certain that we can all agree on that. Some people may think they have it all figured out (anti-vaccine extremists) but for the most part, everyone admits that there is still a lot to learn.

May Increase The Risk of Autism

As such, study after study seems to hit the news wires with the tag line “may increase the risk of autism” and collectively, the entire autism community rolls their eyes.

Some of these studies in the last year include “Living Near a Highway May Contribute to Autism Risk“, “Jaundice in newborns may be linked to autism“, “Sibling spacing may be tied to autism risk“, “Early Prenatal Vitamin Use Prevents Autism” and the list goes on.

You have to understand how these studies come about. Researchers pick a year, or several years, go back through medical records of children born during those years, determine which ones have been diagnosed with Autism and find something that more than 50% of them have in common.

If they find that 55% of children living close to a highway had Autism, then they can release a news story saying that a study was done that determined that living close to a highway increased the risk.

There’s several problems with this.

  1. They aren’t counting the children that have gone undiagnosed.
  2. A lot of information could be out of date or simply incorrect. Historical records in studies make for a huge margin of error.
  3. When you’re looking for a commonality, you can find virtually anything.

Allow me to clarify #3… let’s say that they could find out if a bird was flying over the house at the moment of conception in 51% of Autism cases. This could result in a study stating that birds flying overhead during sex could increase the risk of Autism.

Luckily, there’s no way they could check that but you know what? It’s possible that it did happen.

Does that mean it really increased the risk? No.

Real Scientific Research

Ah, science. You know, that stuff you see on television where they mix chemicals, dissect and examine the insides of animals and people… you know, science.

The most recent real research to be released states: “Gene Expression in the Brain Offers Clues to Autism’s Roots

This study was done on actual children post mortem (after they died), where they actually opened up and investigate actual brain matter of children with and without Autism.  If you don’t wish to read all of it, here’s the summary:

Working with the brain tissue of youngsters after their death, Geschwind and his team found that compared with nonautistic children, those who had the disorder showed a marked drop in gene expression in two areas of the cerebral cortex, where higher-order processing occurs — the frontal lobe, which plays a role in judgment, creativity, emotion and speech, and the temporal lobe, which is involved in hearing, language and the processing of sounds. These areas have been implicated in autism before.

In addition, Geschwind found that healthy brains showed distinct differences in the level of expression of some 500 genes between the frontal and temporal lobes. But this difference in expression was missing in the autistic brains; the features that would normally distinguish the two regions had disappeared, Geschwind said.

This is actual genetic and scientific proof that the brain of children with Autism are different than those without. Furthermore, it goes on to say:

It turns out that even in the womb, the fetal brain begins to show differences in gene expression between the frontal and temporal lobes, suggesting that the developmental abnormality associated with autism may develop then too.

This suggests that jaundice and vaccines and other “after birth” factors likely have no effect. It does not have much of an effect on other studies that base their focus on the mother during her pregnancy.

Even still, it does show that it is a genetic disorder that is not just something that you can force out of them through discipline or shock therapy.

Some other notable scientific research includes “Early Brain Overgrowth Linked to Autism” and “Researchers Reveal 18 Novel Subtype-Dependent Genetic Variants for Autism Spectrum Disorders“.

Again, looking at real subjects instead of just comparing old data, looking for commonalities.

What do we believe?

I’m not saying that we have to ignore the studies base on researching data and basing conclusions on those findings… those studies have real value and they’re done for a reason. However, as we in the Autism community can see, they seem to be grasping at straws.

It’s a shot in the dark approach at playing with odds in a crap shoot who’s results may or may not be accurate. “May increase” means it might not, and “increase risk” means that there’s still a 0% to 100% chance. That means there are lots of people who’s children have Autism that go against what the conclusion of the study states.

Not very comforting.

However, people that know nothing about Autism nor how these studies are done will read them and base their future pregnancies on that information. They’ll move, they’ll take their vitamins, they’ll make sure not to have a child within a year of the previous one… and their child might still have Autism.

They’ll wonder what they did wrong. As if it was their fault.

I share these studies and stories on Twitter, Facebook and here on this blog because, as I said, it’s valuable information. You and I need to know about them just in case someone asks us “hey, I read on CNN, do you think your child has Autism because you lived close to a highway?” and you’ll need to have an answer because your answer might affect their future decisions, and their future information sharing with others.

Keep in mind though, that maybe some of these studies are right. Maybe the data actually does add up and it does make it more likely that your child will have Autism. Unfortunately, there’s just no real way to know which are wrong and which are right. Just because you and I beat the odds, it doesn’t mean that it didn’t make it more likely. Even though I compare statistical analysis to “real science”, it is real science too.

Until they have definitive proof one way or another, we have to keep an open mind and inform others to keep an open mind. “May increase risk of” is a very very vague statement that is very scary to a lot of people even though it really means not much at all.

Don’t avoid them, don’t avoid the questions and don’t get frustrated with them either. Read them to know them and answer the questions honestly.

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The R-Word is not acceptable

Ok so, this isn’t new and I’m a little late on the bandwagon but there’s a reason. You, my readers, are already r-word savvy… you already know not to use it. You already know how hurtful it can be. So I’ve kind of felt like I’d be preaching to the choir if I did a post on it.

I changed my mind.

I still hear the word far too much

R-Word.org

I live in a bilingual city where a lot of people not only speak French but it’s actually their first language. English is second. There are some inherent problems with this that I have noticed. Nothing drastic but there are some things that bother me.

For example, the French here tend to use double negatives a LOT. It’s not their fault though. When you translate French into English, if you do it literally, you end up with a double negative most of the time. I’m not here for a linguistics lesson so just take my word for it.

However this also means that some “slang” and even derogatory words become a regular part of their vocabulary just as easily as it does for teens in high school that throw around the latest trendy verbiage or insults or what have you.

Let’s just say that when something doesn’t make sense to someone around here, the most likely reply I’ll hear is “that’s so retarded.”

Accepting the blame

First and foremost, we all must accept the blame before we can try to make a change for the better. I’ve said it. I’ve never said it as an insult or in a derogatory fashion but I’ve said it as a means to describe something I disagreed with or thought made no sense.

I think it’s safe to say that most people have at least used the word in some way even if not meant to hurt someone with it. Especially those of us that are over 20 or so…. I mean, how long ago was it that we first started hearing that “mentally handicapped” was taking over for “mentally retarded”?

We never meant for it to be a bad thing to say but here we are… it is how it is, it is what it is. Now it’s time to put a stop to it no matter how we intend it’s use.

Making the pledge

There is a website (http://r-word.org) where you can make a pledge to not only stop using the word but to make an attempt to stop others from using it as well. I have made the pledge on their site.

Their site lists a couple of dialog examples on how this subject can be addressed: Example 1 and Example 2.

By doing this, we can help people to recognize when and how they use this word and hopefully stop them doing so.

But I don’t use it to insult anyone

As I’ve said all through this, I have never used the word to insult anyone or in a derogatory way but I still feel that there’s really no reason to use it at all. No I’m not saying that I don’t want anyone else to ever use the word even if it’s with the best of intentions, I am just saying that I do not want to use it anymore.

I feel that it’s use only perpetuates it’s future usage… it’s continual transition from a medical term to a derogatory term to a slang to what ever else it may become. There’s just no need to continue to have it be a part of our vocabulary at this point as it serves no purpose except negativity.

The r-word is not acceptable. Pledge your support.

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Hearing, Listening, Pay Attention and Autism

How many of us have children that don’t listen? All of us. It’s the terrible twos and then the even worse threes that really test our limits. As they get older however, they learn to behave a little better but never do get perfect at it. What fun is listening to your parents all the time?

What I’ve found, however, is that there’s a whole other barrier when it comes to Autism, at least in the case of my son Cameron: focus.

Hearing – Lack of focus

Hearing is the ability to take in the sounds around oneself, or as the dictionary describes it: “The faculty of perceiving sounds.” In the case of many Autistics, there is a heightened ability to take in quite a lot of sounds all at once without the minds filtering system in place to muffle unimportant sounds into the background.

What this means is that it becomes very difficult to focus on one sound in particular in order to truly understand what it is. Or in the case of us parents and our children, they are unable to focus on what we’re saying in order to understand what we said.

Listening – Intent Focus

Listening as described by the dictionary: Give one’s attention to a sound: “sit and listen to the radio”. You can see how this relates to one’s focus. When a person focuses their attention on something, they listen intently. They absorb the sounds or what is being said and all else is dismissed.

Listening is the important portion of your instruction giving. Without it, there’s really no point in talking.

Paying Attention and Autism

When I read articles around the web about Autism, I find that they tend to discuss the lack of focus or the intent focus and very seldom do they discuss both. The truth is that for most children in general, far more to the extreme for those with Autism, you are almost always dealing with both.

I feel that one of the biggest hurdles facing those with Autism is focus. I like to think of Autistics as being digital while everyone else is analog.

Those with Autism have 0 and 1. On and off. Meaning that either all sounds are getting in and they hear it all but listen to nothing or they listen to one thing and hear nothing else. There’s not much room for anything else. This is why your child listening to a song, a toy, a tv show, etc will likely not hear you even though you’ve called their name several times. It’s also why your child will not listen to you in a crowd of talking people when you call their name. They likely can’t listen to you.

The rest of us are analog because our minds have the ability to scale the dial back and forth such that we can tune out the crowds to hear those that talk to us and conversely, can break our attention and stop listening when we hear something else of importance.

Conclusion

We all know that there’s a big difference between hearing us and listening to us… but what we might not know, or may sometimes forget, is that it’s not because they’re not paying attention. Or that they’re simply ignoring us (although sometimes that may actually be the case, crafty kids).

It is one of those things that can easily anger us because being ignored is a very frustrating thing but we have to remember that sometimes it’s not intentional. Sometimes it’s not their fault.

Be aware of your environment and that of your child as well. Perhaps they’re not hearing you, perhaps they’re listening to something so intently that they can’t hear you. Try not to get mad.

Instead, try to break their attention when so directly focused or try to direct their attention when there’s just so much going on that it’s hard to listen properly. Maybe take them away from the situation entirely in either case.

If they’re listening that intently, taking them away could result in a meltdown so it’s a judgment call on your part. But there are ways to change their focus without bothering them too much. Sometimes a hand on the shoulder will do.

Just remember the circumstances at work and the entire situation can be resolved much better without anyone getting mad and making a troubled situation much worse.

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