Archive | October, 2011

If you can’t say something nice…

By on October 13, 2011 in Autism

I know, my mom was the only mom to ever use that expression, right?  No?

I think it’s one of, if not the, first lesson most of us can remember having learned… because right around the time we start retaining memories for later is about the same time that we learn to just say what ever is on our mind.

Before kids learn to lie, they learn to be honest… brutally honest. If your ass looks fat in those jeans, your little one will tell you about it.

I bet my mom never imagined it would be like this

So now I’m a grown up, I have children of my own and I get to sling the old cliché’d lessons around too… but it’s not the same for me. As the parent of an autistic child, I have a better chance of teaching this lesson to my 3 year old than I do my 6 year old son with Autism.

Autism is classified as a social impairment and a lack of fundamental understandings in communication… more to the point, autistics have a hard time maintaining friendships, relationships and even simple conversations.

One of the reasons for this is that people in society aren’t very good at accepting brutal honesty. To most people, an insult is an insult… whether it’s true or not. If you call an ugly person ugly… you’re insulting them.

Why? Because of generations and generations of people saying “If you can’t say something nice, don’t say anything at all.” Would we still take offense to brutal honesty if people didn’t say that? Probably. Still though, when you think about it… it’s actually rather silly.

Essentially people have become so insecure that hearing a negative, even when true, is an insult. And so we teach people not to say anything unless they have something nice to say.

Autism – “don’t say anything at all”

Now I’m presented with two problems that my own mother never had to deal with…

  1. People, especially children, with Autism are already less likely to say anything at all. Either from being non-verbal to begin with or being socially unable, either via anxiety or fear or what have you. So telling an autistic child not to say anything at all becomes very counter productive.
  2. People, again, especially children, with Autism are very much inclined to say what they believe to be true, whether nice or not. Lacking social aptitude as well as having a lack of understanding how and what other people think, they don’t tend to take into consideration how what they say will affect others.

So not only does this expression discourage my son from speaking but it also puts a very heavy weight on him as he will either never know, or never know with any certainty, if what he is about to say is something nice or not.

First, I encourage him to tell the truth and not lie… then I have to tell him not to tell the truth when it’s not nice. This is a lot for any child to deal with, so how well is it going to be taken by a child that is unable to comprehend what others may or may not be thinking.

What to do?

if you dont have anything nice to sayWell, I can’t really go around society convincing people to just be more secure with themselves and accept a little honest criticism sometimes… I’m pretty sure even I can’t live up to that expectation all the time…. although it is a nice thought.

Do I tell my son the same old cliché in hopes that he can figure it out and make the most of it? Do I hope that it doesn’t only complicate matters for him?

Ultimately, this comes down to the age old debate that sometimes still causes arguments among parents of autistic children… do I help my child to conform and be a part of society or do I allow him to be his own person, which in all likelihood will make him a better person but also cause a lot of problems for him down the road?

The problem is, there is no one right or wrong answer and certainly not an easy one.

The best that I can do, for me, I think, is to convey the message but abandon the cliché. It’s true, I need for him to understand when to speak up and when not to, to consider the thoughts and feelings of others but it’s also true that I can’t put the same kinds of expectations on him that my mother put on me.

In other words, I can’t just cliché him to death and expect him to get it.

In the television show Parenthood, Max (child with Autism) tells a former alcoholic that he shouldn’t go to a party because he’s an alcoholic… Max’s sister is quick to respond, as though Max shouldn’t be rude, but the former alcoholic says “it’s ok, he’s just looking out for me. I should be as honest with myself as he is.” and realizes that Max is right.

A part of me never wants to squash that in my son. There’s something there to be admired.

It’s a delicate balance I think… not an all or nothing system. Which just makes it all that much more difficult. I don’t want my son to never speak up for fear of not being nice but I also don’t want him unintentionally offending everyone he meets.

Unfortunately, you won’t get any solid answers from me on this one… this is a life long lesson that even the best of us sometimes still wrong.

Like many things, this is going to be a process… one that will hopefully help him to understand society and his place in it as well as to help me learn some new things along the way as well.

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Autism Study of the Month: Insensitivity to social reputation in Autism

By on October 11, 2011 in Autism Study of the Month

mind reading

Insensitivity to social reputation in Autism

Source:  http://www.pnas.org/content/early/2011/10/04/1107038108.abstract?sid=19d9696a-a416-43f0-9b10-a62f5560e0bf

Abstract

People act more prosocially when they know they are watched by others, an everyday observation borne out by studies from behavioral economics, social psychology, and cognitive neuroscience. This effect is thought to be mediated by the incentive to improve one’s social reputation, a specific and possibly uniquely human motivation that depends on our ability to represent what other people think of us. Here we tested the hypothesis that social reputation effects are selectively impaired in autism, a developmental disorder characterized in part by impairments in reciprocal social interactions but whose underlying cognitive causes remain elusive. When asked to make real charitable donations in the presence or absence of an observer, matched healthy controls donated significantly more in the observer’s presence than absence, replicating prior work. By contrast, people with high-functioning autism were not influenced by the presence of an observer at all in this task. However, both groups performed significantly better on a continuous performance task in the presence of an observer, suggesting intact general social facilitation in autism. The results argue that people with autism lack the ability to take into consideration what others think of them and provide further support for specialized neural systems mediating the effects of social reputation.

Translation

People are more inclined to make a donation to charity when someone is watching them… and less likely to do so when not being watched. In the case of persons with Aspergers or High Functioning Autism, this was not the case. They remained unaffected when a person did watch or did not watch.

This indicates a lack of need or desire for social reputation… or are unable to take into consideration what others will think of them.

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

This seems quite interesting to me because other studies, as well as general observation, indicates that depression, anxiety and fear are often quite common in those with Autism, as they tend to feel, not just a disconnect, but a general rejection from society. This feeling of being an “outcast” results in being teased, bullied and otherwise put down/insulted.

The resulting depression, anxiety and fear must surely be attributed to a very strong consideration of what others think of them.

Still though, a general “feeling” of how others think of you versus a need to build one’s own reputation are two entirely different things.

While much of what this study makes perfect sense, being very easily witnessed in many individuals with Autism, I still can’t help but think that this over generalization and lack of deeper study only serves to confuse matters more for those who try to explain Autism to the uninformed.

It is my opinion, and just my opinion, that those with Autism very much do consider what others think of them, they just may not fully understand what it is that others are thinking nor why… making it so that they wouldn’t fully understand and/or care if someone else saw them donate to charity.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

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42 days ago

By on October 6, 2011 in General

I’ve been wrestling with myself about whether or not I’d write something about Steve Jobs… everyone else is doing it, people must be getting tired of it by now… but I really, really…. really wanted to say this.

I am not a “fanboi”, as they’re called… meaning I’ve never stood in line to buy an Apple product, I have only ever had a couple of Apple products in my life. But that doesn’t mean that I can’t see the impact that Apple, and of course, Steve Jobs, has had on just about every aspect of our current lives.

Especially being in the Autism community where the Apple ipad inadvertently opened up the world of Autism to a whole new way of thinking.

But this is not a post about Steve Jobs or his products.

The answer to life, the universe and everything

If you’ve never read the Hitchhiker’s Guide to the Galaxy, I have to explain this to you because it’s a bit of a very interesting coincidence.

In the book, some super beings ask a supercomputer for “Ultimate Answer to the Ultimate Question of Life, The Universe, and Everything“, it calculates for 7.5 million years before reaching the final answer…. 42.

Why is this a coincidence?

The number of days between Steve Jobs retiring as Apple’s CEO and his death? 42

Working Living until the very end

steve jobs

by Lea Suzuki of the San Francisco Chronicle

The reason that his death came as such a shock to people is that, just a month ago, he was still at Apple, steering the ship.

That just doesn’t happen. You see, people tend to leave work once they get sick. They find out that they have months or even years left, they’re weak… so they step away and make the most of the life they have left.

Not Steve Jobs.

When I first thought about it, I admired how he worked right up until the very end.. or at least, a whole lot closer to the very end than most others would ever do.

I quickly corrected myself though, because the very fact that he was there until the very end was indication enough that to Steve, it wasn’t work. We already knew that though, in that he always professed to love what he did and told others to do what they love. And he proved it all the time.

Some would say that he was a natural at giving his presentations and a marketing genius… I think he just genuinely loved his work. He was proud. That sort of enthusiasm and excitement can’t be faked.

If all of that isn’t proof enough that he loved what he did… 42 will forever be proof enough for me.

He was there because he really was making the most of the life that he had left.

Do not do, be

In the short time since his death (less than 18 hours ago now from the time of my writing this), there has been a constant stream across all social networks of inspiring thoughts, phrases, paragraphs and even entire speeches of his and it’s truly great to see.

But all of these great things he said, he didn’t just say them, he didn’t just do some of the things he said… as many of us will try to do, he was those things. He lived it.

“Stay hungry, stay foolish” is how he finished his speech at Stanford in 2005. Inspiring words, great thought… but how many of us will live that way from here on out?

He did.

There are a LOT of very wise and inspiring quotes of his that I could list out here, the fact is… none of them will do you any good unless you live them. Don’t just agree with him, don’t just believe the words he says… live them.

Here is the video of that speech, please watch:

Here’s to the crazy ones

This commercial from 1997 was never aired. It was narrated by Steve Jobs and has the tagline “Think Different”. If this doesn’t give you a sense of how Steve Jobs’ mind worked… nothing will:

Why did Steve Jobs identify with the people in that commercial so well? Why did he deserve to be included with that list of people?

Because he lived it. He didn’t just say the words. He didn’t just believe it. He lived it.

Impacted our lives

I see a lot of people writing about how his products have impacted our lives, how his thinking has impacted our lives… what I truly love reading are the posts from Silicon Valley from people who became great people in their own right, because of how Steve Jobs impacted their lives far more than a new iPhone ever could.

I don’t need his products to feel his impact. And that’s the beauty of what he was able to accomplish and the true testament to who he was.

I want to live my life as he lived his… doing what I love. I want to do what I enjoy doing until my 42 comes.

More so than that, I want the same for my children. You see, Autism or not, I want my children to find what makes them happy and then to do it. But as a parent of a child with Autism, it’s even more paramount as one of the defining characteristics of Autism is that autistics can excel quite profoundly so long as they’re able to do what it is that they love.

Trying to force someone to conform, in other words, to put a square peg into a round hole, simply does not work. Not with Autism, not without Autism.

“Your time is limited, so don’t waste it living someone else’s life.” ~ Steve Jobs

His products changed the world.
His innovations improved our lives.
His lessons inspire us to carry that forward.

The man did not die.. he became legend.

42

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Balancing the attention between one child with Autism and another child without Autism

By on October 5, 2011 in Autism

One of the most powerful scenes in the NBC hit tv show Parenthood, for me, was when the father sat down to talk to his daughter about how he missed her soccer game due to her younger brother’s Aspergers diagnosis. He needed to be somewhere with his son and couldn’t make it to her big soccer match.

He apologized for how disruptive it had all been for her the last couple of weeks, at which point she says “Weeks? Dad… try years.”

It came as quite a shock to him as she sat there and listed off a bunch of events in their life that was affected by Max (her younger brother with Aspergers)… “ever since I can remember, it’s been all about Max.”

It’s at this point, I wished television had a “look inside his head and see what he is thinking” component but it doesn’t.. in a way, it’s a good thing because that leaves you and I to really take it in with him and realize…. wow.

Advice on how to maintain balance

Cameron and Tyler

Brothers

I’ve had a lot of people ask me lately how I maintain balance between my two boys, Cameron (6yrs old with Autism) and Tyler (3yrs old without Autism)… the truth is, I just keep them both and the need to keep them balanced in my mind.

That may be hugely over simplifying it but at the core, that’s it. I am just always conscious of it and even concerned about it. I don’t want either of them to ever feel left out. So every time I’m with one of them, I wonder what the other is doing or thinking.

Cameron is in a special class, it’s a very very different class from Tyler’s class. He gets better technology to use, there’s less children, more adults and even though the routines are more strict, the structure is less so. Being a class of autistic children, there’s no real curriculum, not in the sense that some other classes have anyway.

We’ve missed out on carnivals and amusement parks because the noise and crowds would simply be too much for Cameron. That means that Tyler has missed out as well. We have avoided some restaurants because Cameron might be overwhelmed at them… that means that Tyler has missed out as well.

Right now, Tyler is 3 and so, that old cliche about not missing what you don’t know about applies. But soon he will…. and he may resent having missed out on some things in his life due to his older brother.

So, every time we don’t do something or change something to accommodate Cameron, we have to keep Tyler in mind… going to a different restaurant, or someplace else that is fun.

It likely never really balances exactly but it’s something. So long as you’re conscious of it, it’s something. An effort will be made.

It goes both ways

When Cameron was little, like, really little, he needed some snuggle time with me every single morning when he first woke up. As he got a little older, he rejected that idea. He not only didn’t need it but didn’t want it. Now he enjoys a hug from time to time, we have our routine hugs and kisses before bed but any semblance of affection in the traditional sense beyond that is nowhere to be seen. Which is ok by me. I know he loves me with or without it.

Tyler on the other hand loves to snuggle while he watches tv, gives me hugs quite often and is not shy about showing his affection at all.

Sometimes this has me wondering though, as I sit with Tyler on my lap watching tv while Cameron is in a chair across the room… does Cameron feel left out?

I have asked him multiple times and will continue to do so from time to time, if he’d like to sit on the couch with me, he always says no… and I respect that. Still though, a part of me wonders if there’s a small part of him that actually would like to but prevents him from doing so. I’m not sure I could describe it adequately enough but you get the idea… a part of him longs for that show of affection but a bigger part of him prevents him going through with it.

It’s also entirely possible that he doesn’t feel left out at all and really couldn’t care less that I snuggle with Tyler and not with him. Unfortunately, there’s a good chance that I’ll never really know for sure… or if I do, it’ll be later in life… when it’s too late.

The future

The problem with all of this is the resentment… what we all fear of our children, regardless of special needs. The last thing we want is for our children to resent each other for something that was our, the parent’s, fault. Something that we could have done better, avoided, recognized… done something about.

Hindsight… it hurts because by the time you get it, it’s too late.

Unfortunately, I don’t know your family dynamic, I don’t know you and I don’t know you’re children… so I won’t be writing any blog posts on tactics to use or methods to apply to your daily life. The only thing I have to offer is…. keep it in mind.

So long as you keep yourself aware of it, you’ll do something about it. Your mind kind of makes you do it.

There are quite a few articles out there, by doctors, with good suggestions… like having nights dedicated to each child, having “desires” lists for each child where they each get to have their desires fulfilled… putting them on equal footing…  some of those articles will have some insights that may help you.

But ultimately, only you can know what will and won’t keep things fair and balanced. In fact, chances are you won’t know, not at first. But you’ll figure it out… so long as you always keep it in mind.

Me?

I give Cameron an extra “I love you” from across the room while I have Tyler sitting on me. I just like for Cameron to know that Tyler may be on my lap, but I’m thinking about him too.

See? It’s not complicated. It’s not worth putting into a “how to” article to share with the world. It’s something I do… you’ll find something you can do.

Just remember, it’s not just the negatives (missing out on things, avoiding fun stuff, etc) that cause resentment… it’s the good things too (showing affection, spending more time with, etc).

Keep each child in your mind equally because they are equals. They deserve to be treated that way.

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The complexities of a hug

By on October 1, 2011 in Autism

My son used to need snuggle time with me every morning when he first woke up. For the first little while, it was a bit of an annoyance (I sometimes had other things I needed to do) but a very pleasant and welcomed one. I cherished that time we had each morning and even though he refuses to do that with me anymore, I still remember it fondly.

While he never was a hugger or anything, that snuggle time was pretty awesome… but, once he no longer desired that, it all came to a stop. He still loved me but there were no more “signs” of love, in the traditional sense.

Then, a few years later, he become more and more willing to give and receive hugs… until eventually he became to depend on them. Every single night, before bed, we do hugs and even kisses… as regularly and routinely as we had done when we had our morning snuggles.

This too will stop one day, as he gets older, but that’s ok. I love it for right now and knowing what I know about Autism, it’s not something that I would ever take for granted.

How does a hug work?

hugsNo one ever thinks to ask what it is about a hug that makes it so comforting… how does it work, what the rules when hugging? That’s because it pretty much comes naturally. Someone hugs you, you hug back and all is good with the world.

It just isn’t that simple for my son. I mean, for the most part, he gets it… he loves to hug me before bed and there is no way he could get that wrong.

Have you ever hugged someone because they got hurt or felt sad? Cameron does that too… all on his own. No one taught him that. However, this is where the complication comes in.

Egg timer?

Believe it or not, at this point, we have to start timing his hugs… so that he knows when to let go. That may sound a little odd but basically, it’s become necessary.

When his little brother is hurt, Cameron will grab him, and hug him with every fiber of his being… and not let go. To Cameron, that’s what you’re supposed to do.

And I love that about him… I truly do. He really truly cares, he really truly is trying to make it all better for his little brother.

But if you’ve ever grabbed onto an upset 3 year old and tried to hold him there, you know that it doesn’t work very well. After a few seconds, the little guy goes completely nuts and matters only escalate from there.

This makes Cameron want to hold on tighter.

When his little brother gets more upset, Cameron holds on more, thinking that it will help. He’s truly a wonderful big brother, I love that about him. However, he’s going to need a little guidance on this one.

Hug Instructions

As a parent of a child with Autism, I’m sure you can relate with this but…. there are just some things in life that you never imagined you’d have to give instructions on. Like giving a hug for example.

But that’s what it boils down to. Hug instructions.

The trick is to make Cameron understand that he’s not doing anything wrong. That we are so very happy that he loves his little brother and that he wants so bad to make everything all better.

While reassuring him of that, we simply need guide him in how to do it in a more appropriate fashion… for example, counting to 5 and then letting go. Recognizing when his little brother gets MORE upset and then letting go. Things like that.

And they’ll take time and take work, but it’s so worth it because I’d hate for Cameron to feel bad about what he’s doing and shut it out of his life forever.

I lost those morning snuggles and while I understood why and I didn’t really mind, I realized never to take such a wonderful thing for granted. And it’s entirely selfish of me, in a way, but I don’t want to lose Cameron’s desire to hug us.

And as much as his little brother gets upset when Cameron holds on too long… I’m fairly sure that he wouldn’t want his big brother to stop either.

Who knew that hugging could be so complicated?

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