Tag Archives | communication

Handheld devices and the benefits to children with autism

By on September 14, 2011 in Autism

I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.

So what is it about handheld devices that are so great for children with Autism? What are the downsides?

It’s all about control

handheld devicesHaving something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.

You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.

Doing what you love

My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.

When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.

Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.

Blocking out the world

The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.

If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.

Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.

These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.

Educational

Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.

And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.

There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.

If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!

The one big downside

There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.

The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.

I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.

But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.

It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.

We just had to endure the meltdowns for a while to get to this point.

Handheld devices such as books?

You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.

He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.

You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.

That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.

The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.

Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.

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When raising Autism Awareness gets out of hand and becomes something else

By on August 25, 2011 in Autism

I’ve been noticing a disturbing trend lately…. Autism Awareness.. run amok!

Autism awareness is a great thing, it’s a wonderful thing…. it’s a necessary thing.
But as we all know, too much of a good thing can be bad for you.

Here are just a few instances where well intentioned Autism Awareness becomes more of a nuisance than a good thing.

towerThe Share-o-holic

This happens all over the internet but the two most obvious places I see it played out is on Twitter and Facebook. This is what it looks like:

  • Twitter: Instead of tweeting a link or message, they mention every single person they can find on Twitter and tweet their link or message, over and over, to each person, until they get blocked by Twitter for spam. Often, these all come with a request to retweet it.
  • Facebook links: So excited about a blog post or someone writing about them, they race to every profile, fan page and group that they can find on Facebook to share that link. Thousands of shares later, they do it again the next day.
  • Facebook bios: Having written a cleverly worded bio about who they are, what they do or what they offer, they hit every profile, fan page and group that they can post to and repeat it again, word for word, weekly or more.

This constant repetition is frustrating enough but seeing it daily or weekly is enough to make me want to unlike those fan pages, remove myself from those groups and so forth… all because of one person. And I’m all for Autism Awareness! Imagine what others must think.

The News Source Replicator

Being aware of what is in the news is paramount to being aware of what’s happening in the Autism community but also in being aware of what may benefit you or your children. Some new information may shed some light on things close to home, some new therapy may be just what you need.

That’s great!

However, what we don’t need is for people to automate their Twitter account to just pull from a news source on Autism.

If their entire Facebook feed is news stories and never an actual conversation piece or anything, no one is reading.

If they login to Google+ once a day just to hit the share button on every single Spark available that day and then they’re gone after… people will remove them from their circles.

Listen to me carefully, if all you have is news… no one is reading. You’ve blown it. Autism Awareness is your goal but not your achievement.

Alienating Your Own Kind

Oh this one scares me… I just shake my head…. violently. I am just so dumbfounded.

Recently (late July to be exact), Temple Grandin created an actual Facebook profile. Not just a fan page, but a profile. So she could have friends and everything.

It was quite impressive to see how quickly she got to 5000 (the max). It’s a true testament to her and her work.

However….

For the last 2 weeks, I’ve watched update after updating of Temple Grandin joining an Autism group on Facebook. Now, groups don’t work the way you might expect. Temple Grandin isn’t actually joining these groups. The groups are adding her.

The way groups work on Facebook is the group can just add anyone it wants and it’s up to those people to opt out.

Now, think about how frustrating this must be when it happens 10 or 20 times a day.

Granted, it’s mostly someone representing her and also, she’s a very kind woman and probably doesn’t really mind being in all those groups however at the same time, it’s really quite rude of so many people to do this to her. Her Facebook stream must be simply filled with group posts. Insanely filled.

Is this really how we treat someone we respect so much? We force hundreds of Facebook groups on her until she finally decides she’s had enough and leaves Facebook behind?

What exactly is it we’re doing?

Are we really raising awareness when we do this? Are we really “sharing our message” with others?

Or are we trying to ram our own need for attention down the throats of others?

Because sometimes, I have to wonder.

And if you know me, you know that I’m all for raising awareness. For doing more than that! But this is not the way to do that.

Making people want to block you, unfollow you, leave the places they used to enjoy… all just to get away from you.. what is it you’re really doing?

Broadcasting

In the social media world, this is called broadcasting. This means that all you do is send message after message, link after link, story after story and you either don’t, or very seldom actually interact with anyone. You take nothing in.

If you treat social networks as your own personal radio station, you’re doing it wrong.

First of all, no one listens to a radio station that only has one song.
Secondly, people  looking for social interactions don’t turn on a radio for it.

I’ve often said that Autism Awareness is a passion for some people but the problem is that passion can be blinding sometimes. In an effort to share the message with the world, you become obnoxious and the world becomes annoyed and tunes you out.

When that happens, you don’t just hurt yourself, you hurt all of us for all of our messages become a little less powerful, a little less heard.

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When Autistics Write About Autism

By on August 14, 2011 in Autism

There’s a very unfortunate bit of irony happening within the Autism community that is far more disappointing than ironic… we encourage Autistics to speak up and to not be afraid to say what is on their mind but then when they do, we attack them for not saying what we want to hear.

This has happened quite a few times over the years but even more so in the last week as autism.about.com had a series where adults with Autism were asked to submit a piece about themselves and what they stand for.

Repeatedly, these people would put themselves out there only to be met with some scathing comments from people. Several people have written about this as it really does have a big impact on the Autism community… and here’s why:

Autism Introverts

Autism itself is defined as a social and communication impairment which means that speaking out about something probably doesn’t come very easily. We encourage our children as well as all people with Autism to speak up.. especially about Autism.

Only an Autistic can describe what it’s like, how it affects them. We parents can give secondary accounts, how it affects us and how we perceive it affects our children but when it comes to first hand accounts, we need Autistics to break through their shell.

More so than that, we just want people to be who they are. Autistic or not, don’t be afraid to say what you have to say. Being who you are is one thing that only you can do. But many Autistics are either afraid, uncomfortable or just simply not interested in putting themselves out there.

As a result, Autistics make the best Autism Advocates but because of the nature of Autism itself, it also makes them the worst advocates.

arguingDisagreeing is hard to do

In society, not just the Autism community, it’s not uncommon to see people attack others that they disagree with.

On the internet, people don’t have to look you in the eye to say something hurtful. That makes it a lot easier. You don’t have to deal with their unease, their obvious fear, their expressions… you can just say the most hurtful thing you can think of and leave.

This happens far too often and it’s not just limited to hot topics like religion or politics. It happens far too often in the Autism community as well and not just between parents.

I’ve seen Autistics write about themselves, how proud they are of themselves. Often they write about how they advocate on the higher functioning end of the spectrum only to be attacked by parents that have children on the lower functioning end of the spectrum because they didn’t say what they wanted to hear. The parent disagrees so adamantly that they attack the Autistic person because what they say doesn’t mesh with the parent’s experiences.

It happens with many other topics as well… sometimes they get attacked for the most simple things too, seemingly random things. They can just be positive and be attacked for it, or negative and attacked for it. There’s no rhyme or reason. Nothing is safe.

On the surface, it appears that simply stating “I disagree with what you’re saying because” has become impossible to do, instead becoming a verbal attack of some kind on their intelligence, their logic or some other personal aspect of their being.

No Free Pass for Autistics

All of this is not to say that Autistics can just say or do anything they want without judgement. Autistics still have to abide by the same code of ethics, etiquette and behaviors as the rest of us. Autistics can’t just make their own attacks on people or be rude and not expect some backlash.

If we are to be fair and wish for equality in acceptance, then those that behave poorly should expect some anger in response.

Not all situations are uncalled for… in some cases, an Autistic will be rude or do things that are simply unacceptable and the response from the people is not entirely unexpected. Perhaps some would call it over board but certainly not unexpected.

I Am So Disappointed

In most cases, I am simply disappointed. I’m not sure I can put it any other way than disappointed.

Many times people say things I disagree with and most often times, I don’t say anything. If it’s blatantly wrong however, I may speak up but I’m always careful to be respectful. I don’t know those people, I don’t know what drew them to their conclusions.

I respectfully disagree and state what I think and why. It’s always been my experience that this is the proper way of civil discourse.

What I see most of the time, however, is people calling each other idiots (or other derogatory names) and question their intelligence, or upbringing or something along those lines. Usually they state what they think and don’t even provide a reason for it… they just make their attack, their stance and that’s it. Giving people no recourse but to attack back since there’s very little to either understand or make a case against in rebuttle.

It is so very hard to take something you’re passionate about and disagree with someone respectfully. It’s even more difficult to be civil with someone that so strongly contradicts your beliefs.

But it’s not impossible.

Acceptance… We’re Not Ready

I really want for society to be more understanding… I really want for people to be more accepting of the differences in people, especially when Autism is involved.

But I think it is very clear that we’re just not ready…. as a society, we’re simply not there yet.

Until we can put aside our own hatred, our own anger, we can’t expect those that don’t understand Autism to do it.

We encourage Autistics to come out of their shell, to speak up despite their anxiety and fear and then, when they say something we disagree with, we immediately lash out and bully them back into their shell.

We do this to our own community, we do this to our own children… and yet we expect others to be more respectful?

There is something fundamentally wrong and I am so very disappointed by it.

The Autistic Me has a great post about all of this, some others have discussed it on Facebook and Twitter and in response, Lisa from Autism.About.com has since taken down the 2 most recent posts that were written by adults with Autism.

If it was your child

My advice is, when you see a post by a person with Autism, imagine that person is your child. Imagine you’ve encouraged you child for many many years to speak up and to be brave… to not worry about what people say and just share who they are with the world because who they are is beautiful.

If you and everyone could do this, the responses would be vastly different. Even if you disagree, you’d respond with respect.

Disagreements do not need to be charged with anger or hatred. Disagreements can be made without assumptions of the person. Disagreements can be made without attacking the person.

If that was your child that spoke up proudly, you might still disagree but you’d disagree in a very different manner.

If you are an Autism Advocate, then perhaps you should consider that all people with Autism are your children. For we speak for all, not just our own children. And we encourage all, not just our own children.

Don’t be so quick to hate. Don’t be so quick to assume a person’s history or intelligence level just because you disagree with them.

Speaking out is hard. Be proud… even if you disagree. Be respectful, even if you disagree.

If you won’t… how can you expect others will?

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The truth about how a research study goes from the lab, through the media, to the people

By on August 5, 2011 in Autism

I recently wrote about how the media is causing a civil war within the Autism community… it happens with many communities but obviously my focus is on Autism. It’s why you’re here reading my blog.

In response to that, Josie commented with a link to an image which is both hilarious and, more importantly, true.

It’s a very accurate description of exactly how a study can go from a researcher’s lab/desk, through the PR office to the media, through the national and local media, through the bloggers interpretations and finally, to the people.

And sadly, like a really messed up game of Telephone where the original message doesn’t even come close to resembling the final message… the study gets very distorted until what’s being told from person to person isn’t even remotely the same as what the original study concluded.

So the next time you read about a study in the news, or see something on television… remember this image because chances are, this is exactly what happened before it got to you.

science in the media

Source: http://phdcomics.com (Click for full size)

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Being an Autism Advocate – What I can overcome and what I can’t

By on August 4, 2011 in Autism

There is one inherent problem with being an Autism Advocate. That is that what makes a person the best Autism Advocate also makes them the worst.

Sounds strange, I know but let me break it down for you, as how I see it.

The two best types of people to be an Autism Advocate are:

  1. A person with Autism/Aspergers
  2. A parent of a person with Autism/Aspergers

Who would know more or understand better than these people? Who better to stand up for their rights than the people right in the middle of it?

ObstacleHowever, think about it. Does it makes sense for a person with social and communication difficulties and impairments to be out there, speaking out and advocating for everyone? Does it make sense for a parent, with virtually no time or money, to be devoting time and money that they don’t have to speak out on behalf of others?

Parents are tired, Autistics are introverts…. Parents are busy, Autistics are usually avoiding the crowd.

It creates quite the problem when the best people to speak are the ones that are the least likely to.

There are some exceptions and there are other people that make great advocates, but for the sake of this post, I’m generalizing the majority for the sake of making a point.

What I can overcome

Social networks have really changed the world in that, you don’t have to be a celebrity or own a national news network to reach people.

My blog posts can reach hundreds, sometimes even thousands of people in a day. My tweets and status updates are the same.

And it’s not that what I do is all that great but that the people that follow me or read my stuff are so supportive and kind that they’re willing to share it with their own networks to help me reach out further.

Sitting in the comfort of my own home, I can reach thousands so long as wonderful people allow it and support me.

What I can’t overcome

I work a 9-5 job, like many people but I feel like I could do so much more if I didn’t. I can’t write like I want to, I can’t get out there and spend time with people, I can’t do interviews with people… it’s very limiting.

On top of that, even when I’m not doing the 9-5 thing, I am often doing quite a bit around the house since my wife has Fibromyalgia. Much of my off time, and even sometimes during my work time, I am doing quite a bit of chores around the house.

I live in the middle of nowhere, which means I can’t get to seminars, conventions or even out just to meet some of the wonderful parents, doctors and Autistics within the community.

No money is another big one. I can’t even buy the books that I hear about or that I’ve been wanting to read for so long.

The desire to do more

I have an itch…. I want to do so much more. I want to be more involved, I want to be contributing far more than I am.

But at the same time, I need to be a little proud of myself. I’ve been able to do quite a bit despite having so much limiting me.

The same is true for so many other advocates out there. If you reach an audience, whether that audience is 2 people or 20,000 people… just think of all that you’ve been able to overcome to achieve that. And think about, not only how good that feels, but how much good that does.

I think we’d all like to do more… and the more we do, the more we will want to do. That’s what makes an advocate a good advocate, I think.

If you’re an Autism Advocate, or any kind of special needs advocate, I want you to know that yes, I am bragging a little in this post.

It’s ok to brag a bit, so you should to. Don’t make it a big deal but feel good about what you are able to accomplish.

Even if you do find some obstacles that you are unable to overcome, you should be proud of the obstacles that you can overcome. You should be proud of yourself.

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