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

By on May 30, 2011 in 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.

Comments { 137 }

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

By on May 29, 2011 in Autism

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.
Comments { 1 }

“May increase the risk of autism” studies versus real scientific research

By on May 27, 2011 in Autism

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.

Comments { 6 }

When logic trumps emotion, this is what you get

By on May 22, 2011 in Autism

I recently got Gnomeo and Juliet for the boys, it’s quite the cute take on an old classic. Also, it’s very bright, colorful and full of action. Just perfect for a couple of energetic young boys.

I don’ t want to spoil the end for you, so stop reading now if you don’t want to know… They don’t die at the end. Actually, instead, there is a really great feel good moment at the end that should make you quite happy.

20110522-030333.jpg

As the moment happened, Tyler (my 3 year old without Autism) jumped up and said “hooray” and gave me a big hug.

Contrast that with Cameron (almost 6 with Autism) who said “Dad, he has blue hat!”

Now, it’s not that Cameron wasn’t happy at that moment, it’s just that he had made an observation and that became his primary focus.

This tends to happen a lot and some people mistakenly think that Cameron has no feelings or that he lacks empathy but the truth is that it’s just not what comes out of him at the time. The feelings are in there.

Just because the logic trumps the emotion, it doesn’t mean that the emotion isn’t there.

Comments { 2 }

Trying to fit in with the wrong crowd

By on May 17, 2011 in Autism

I want to share with you a conversation I had recently with someone that isn’t even on the Autism Spectrum, but as you read, I want you to think about how it relates… because this was advice that I had given her as if she was on the spectrum.

Her story

She is a young woman, mother of two and very loving. She’s never understood other parents who are eager to get their children on the bus to school or off to daycare in order to have a break because she’s always valued her time with her children so much that being apart from them never felt like a break.

She was always great at school, always had a good job and always took her responsibilities very highly. Even so, she still loved to get out into the great outdoors, do hiking, camping and even had her hand in a bunch of sports.

Since having children though, she’s given most of that up for the sake of her children, not that they need her that much, just that she’d rather spend time with them than to be out doing other things.

The crowd

The friends and family she has are quite a bit more carefree than she is. That is to say, they enjoy getting their breaks from their children. It’s not that they don’t love their children, and all children too, as much, it’s just that they also value their freedom.

As such, the crowd tends to go out, drink a lot, party it up and endure the hangover the next day. They are more inclined to find ways to get their children out of the house to make sure that they can be as loud and obnoxious as they can be without affecting the children. Again, they love the kids and they’re really not obnoxious but they have the freedom to be if they so choose without children being there.

The problem

One night, the woman found herself quite down on herself as she pondered her own short comings. She was boring. She was no fun. She was a square.

She began to realize that she didn’t like partying, she didn’t like drinking and she certainly didn’t like being obnoxious. She tried her best to go out dancing with the crowd and she did her best to have fun with them. However, most of the time, she didn’t drink, she didn’t try to have conversations over the very loud music and she didn’t want to stay out too late because her children would be up early the next morning.

She felt like a loser.

Meanwhile, the crowd felt weighed down by her. They depended on her to do the driving, they depended on her to be a part of the high spirits of the evening. And no matter how much she danced or sang or got obnoxious… she was never really one of them. She never quite fit in.

She knew it, they knew it.

You can’t fit a square peg into a round hole

Square Peg in a Round HoleThe reality of the situation is that she doesn’t fit in with the crowd. They like it loud, they like to come home late and they like to be carefree. That isn’t her.

That’s not to say she isn’t fun. As I said, she has her hobbies and activities and she actually does drink. She just likes to drink in a quieter setting where she can talk to the people she’s with…. at a time where she can still get some sleep before her children wake up.

They value their freedom, their drinks, their late nights and their loud music. That’s fun to them. It’s not fun to her… yet she tries. She tries so hard.

Yet no matter how hard she tries, she feels like a loser. She feels like she can’t have fun, she feels like she’s boring.

Is she who she thinks she is?

Think about this. What happens if she finds another crowd that actually enjoys doing what she enjoys doing? Will she still see herself as boring?

See, what’s happening is that she’s trying to have fun doing what she thinks is not fun, in order to fit into a crowd that doesn’t fit her.

She’s altering who she is to fit who they are and rather than becoming what she wants to become, she’s depressing herself because she’s not that person. In the process, she loses who she is. She’s not them, she’s not herself… she doesn’t feel like she fits in anymore. That’s a lonely and dark place to be.

When you try to fit in with the wrong crowd, no matter how hard you try, you become someone you’re not. Either you succeed and you’re doing things you don’t enjoy or you fail and you’re unable to do the things you don’t enjoy… either way, you are left feeling like a shell of a person.

How does this relate to Autism?

More and more, we try to “integrate” Autistics into “normal” classes and “normal” society… we teach our children the mannerisms, what certain expressions mean, how to behave in certain situations and so on and so forth but for the most part, we have to remember that what we’re doing is helping them to fit into the wrong crowd.

That’s not to say that I know what is or isn’t the “right” crowd, but I do know that those people with Autism that are unable to tell what others are thinking or feeling are very rarely going to feel like they fit into which ever crowd they may find themselves in.

When they say that depression is common among those with Autism, you have to realize what it is that we’re not only asking of them, but trying to force on them.

The woman that I talked to was simply doing her best to fit in with people that weren’t the right people for her… she may be unaware of why she’s becoming depressed but she’s still doing it willingly.

With Autism, we’ve given most of them no choice. It’s fit in or you don’t belong.

Can you imagine how hard that is??

We can’t stop helping our children and loved ones with Autism to “fit in.” They do need to be able to navigate the world on their own but we have to remember what it is that we’re asking them to do.

The woman in the story can learn where she’s going wrong and adjust her own search parameters to find the crowd that better suits her.

My son can’t.

The only alternative to help the woman, and my son (all those with Autism) is to help them be comfortable with who they are. To help them to fit in still, but to understand why they don’t quite fit the mold as well or as easily as others do and to be content with themselves despite that.

Recognize why the crowd looks at them differently and why they look at the crowd differently and be happy with themselves despite that. Accept the crowd and the crowds differences as the crowd accepts theirs.

Square pegs don’t fit into round holes. Don’t stress yourself or depress yourself in trying. Be happy with who you are.

When you do understand it and accept it, you’ll feel better about yourself, the crowd will feel better about you and even though it still won’t quite feel right, it’ll be a whole lot better.

Comments { 6 }