Archive | Autism RSS feed for this section

So proud of my superhero on Halloween

By on November 2, 2011 in Autism

Cameron is not a brave boy… that is to say, he’s easily frightened by a lot of things including heights, the dark, people he doesn’t know, houses he’s never been too… I wouldn’t say he’s a coward exactly, more so that he’s very cautious.

Perhaps a few days ago, I may have let you get away with using the coward word…. but not anymore. Now I definitely have to go with cautious. Here’s why…

Halloween Day

My boys went to school, my wife brought their costumes a little later for when all of the students were to get dressed up. They had a great time, everyone looked great and had fun.

Then, when they got home, Tyler (3) felt very sick and went to bed. He is Cameron’s little brother. He slept for hours and woke up with a fever.

The decision was made that I would take Cameron out and my wife would stay home with Tyler.

The Drive

We drive to my inlaw’s place because they are in a nicer neighborhood and my wife’s mom likes to go out with us and see all the children… while on the drive, I asked Cameron if he was sad that Tyler had to miss out on Halloween.

He said “no”.

I told him that I was sad because he’s 3, this is very important to Tyler.. getting lots of candy, having lots of fun… and for mom too because she has to miss out too.

Cameron, thinking about it, asked “Tyler won’t get any candy?”

I said “No, he won’t. He is home sick, not able to go to people’s houses and say ‘Trick or Treat!’ and get candy to eat.”

Cameron decided, then and there, that he was going to “get one hundred candies for me and one hundred candies for Tyler!”

The rehearsal

So now that we had a mission, I told Cameron that what he’s going to have to do, after he says “Trick or Treat!” is to also tell the person that his little brother is home sick and ask if we can have a candy for him too.

This excited Cameron quite a bit, and not in the “ya, extra candy!” kind of way that I expected either. He genuinely wanted to get candy for Tyler.

In Practice

So we go out and Cameron absolutely refuses to knock on the door. So I do, and after prompting, he says “Trick or Treat” really quietly… and doesn’t utter a word otherwise. I mention to the lady that Cameron has 2 buckets for candy because his little brother is home sick and Cameron really wants him to have some candy too.

He was extremely nervous… this is totally understandable and I don’t push him in the slightest. However, over the course of the next few houses, I let him know that he’s going to have to knock on the door soon.

He still doesn’t.

Finally, a house with no steps, no entry way that’s narrow… he feels ok about it and with me beside him, he knocks… very quietly.

But this was the beginning of a very successful night because from then on, he would knock on every door.

A few houses later, he did what I truly thought he wasn’t ever going to be able to work up to…

With his head down, talking to his feet in a very quiet voice, he said “Tyler is my little brother and he’s home sick.”

That was it.

And from then on out, it was his line at every house… sometimes a little louder, sometimes not… but he’d tell the person.

HeroMission Accomplished

Cameron was so very excited to fill up Tyler’s bucket and even more excited when it was a particular candy that he just knew that Tyler would like.

Upon returning home, you would think that he had just won an Olympic medal because he was so proud to run in and show Tyler all the candy and say “Tyler! Mom! I got Candy for mom and for dad and for Tyler!!”

Sure enough, most everything in there had doubles.. even the very thoughtful person that put a paper cup with a packet of hot chocolate in it for after the trick or treating.. there was two.

So in the end, I can say without a doubt that my son is extremely cautious and will likely shy away from a lot of things but he is most definitely, absolutely not a coward.

He’s our hero!

Comments { 1 }

Autistics Speaking Day – November 1, 2011

By on November 1, 2011 in Autism

Today is “Autistics Speaking Day“, in place of what might have been the second “Communication Shutdown Day”. Sound like quite the conflicting sort of turn of events?

Last year, a group out of Australia started “Communication Shutdown Day” on November 1st where neurotypical people (those without Autism) were to sign off from Facebook, Twitter and other social sites in an effort to better understand what it is like to be non-communicative, or unheard or… well, autistic.

With all the best intentions in the world, this idea made very little sense to most people since shutting down in order to speak out was a bit of an oxymoron and also, social sites were proving to be the first real way in which Autistics could finally have a voice in the first place.

I wrote a piece last year about why I won’t be shutting down for November 1st, as did many others.. and so, it would seem, no real effort was made to continue to the project on for a second year.

ASDayBy Autistics, For Autistics

What did come of the shutdown day project, however, was a whole new day in which, autistics do the opposite of shutdown… they speak out. A day in which autistics share their struggles, celebrations, strengths, weaknesses and experiences in general with as many people that will listen.

That’s a much better use of a day, if you ask me. In fact, that would be a much better use of every day. But obviously, trying to give every day a name is a little tougher than you’d think.

Still though, a day where autistics can share with the world is a great start and far better than asking others to stop talking…. or is it?

Contradiction or merging of ideas?

Still though, when I stop and think about it… is it really that much of a contrast?

The shutdown day project asked that non-autistics stop visiting their social networks and to go silent… which all by itself really is a dumb thing to do.

However, in conjunction with “Autistics Speaking Day”… it’s starting to actually make a lot more sense to me.

If autistics can have a day where they can speak their mind, tell their tales, share their experiences and speak their mind… free of judgments or criticisms from others… well, the whole thing starts to make a lot more sense.

Maybe if “shutdown” was changed to “shut up and listen”, then the two days truly would be the same thing, rather than opposites. Instead of abandoning social networks, if we were encouraged to seek out social networks and find as many autistics as we can that are sharing something today and just listened rather than putting in our own 2 cents…. maybe November 1st really wouldn’t be all that different from what it was originally supposed to be… maybe it’s just an extension of it.

Perhaps if autistics make an extra, and sometimes difficult, effort to open themselves up to the world and share their experiences and thoughts on Autism, and everyone else made an effort to set aside an hour or two to seek those autistics out, and really just listened, we would finally have a day that made perfect sense.

So, if you have Autism, I encourage you to take part in “Autistics Speaking Day” today, November 1st.

And if you do not have Autism, I encourage you to seek out some autistics on Twitter, Facebook or even in good ole Google search and spend a little time reading today.

The more that is shared and the more people listen, the greater the opportunity for understanding and acceptance for all people with Autism.

Comments { 4 }

Breaking the Autism barriers with technology, but who’s barriers are they?

By on October 27, 2011 in Autism

There has been a lot of talk lately about iPads and, to a lesser extend, some other technology that has been vastly improving the treatment methods of autistics all around the world.

Yes, autistics are finding a way to communicate using an iPad. Thanks to the hard work of some very amazing developers, a child, teen or adult with Autism can move a finger around and select emotions, objects, words or even letters on an iPad and express themselves… even though no previous method had worked for that person before.

Most people see this as a means for autistics to “come out of their shell” or to “break through the barriers of Autism”… for me, I see it as a way for us to break through our own barriers.

Intellectual Equivalent

If you’re familiar with Autism at all, I’m sure you’re familiar with the term “intellectual equivalent.” It’s used to describe the maturity level of a person that is not at the maturity level that they should be for their age.

For example, a 30 year old man that is unable to speak, use a toilet or dress himself may be considered to have the “intellectual equivalent” of a toddler.

The problem with this is that it was generally assumed that these people had very low IQ scores to also indicate this lack of intellect.

A child, that was featured in the CBS show 60 Minutes, is actually pretty smart and actually likes classical music and opera. The thing is, no one knew it.

It wasn’t until the child was able to use an iPad that they began to realize just how much he knew… and discovered his love for music.

barrierWho’s barriers are being broken?

Is it really that child that’s breaking through his barriers? Or is he still the same child that he’s always been?

Some would say that he is, because he’s now able to communicate the things he knows and his taste in music… however, I’d argue that it’s more a case of us being able to break through our barriers.

He’s always liked opera, he’s known what a saxophone is before he used the iPad.

You see, up until now, we’ve had no way to ask the question and get a response. That’s on us, not that child. We’ve banged our heads on the wall over and over again trying to find ways to get input and output on a level that, not only could he use, but so could we.

The iPad provides that interface, not just for those autistics to communicate but for us to change the way we think.

Changing the way we think

Not only are we now able to ask in a way that many autistics can understand and get a response in a way that many autistics can make us understand… but it’s changing everything we know about “intellectual equivalent” measurements.

This child is clearly not a toddler. Not in his actual age nor in his “intellectual equivalence.” Toddlers do not know what a saxophone is.. much less view opera music as a reward. This child does.

The segment does not state what his IQ test score results would be, if they did one, but I’m fairly certain that what ever it was, is not reflective of just how much he’s able to indicate that he knows via the iPad. Do toddler level IQ scores allow a person to identify a saxophone on a screen?

Something to think about

It’s human nature to speak about a person as if they’re not even there, when it appears as though they’re not hearing what we say. Maybe not right away and certainly not intentionally, but people do it none-the-less.

The thing is, as was always suspected by some people, these children truly are taking it all in. They see it, they hear it and they feel it.

So swear words, abuse, insults, derogatory statements… all kinds of hateful and hurtful things can be taken in by these children that you may think aren’t absorbing anything at all.

Likewise, they will also be learning as you read to them, learning as you speak to them, feeling as you love them and taking in all that happens around them.

And it may be years, it may be never… but maybe, just maybe, someone will hand your child a piece of technology or an app that helps you to break through your communication barrier and your child will astound you.

So even if a doctor uses the “severe” word, even if your child scores low on an IQ test… and even if someone tells you that your child has the “intellectual equivalent” of a child or toddler… remember, those are just barriers. Once you find a way through, you may be quite surprised at what you find out.

 

For more on the CBS show 60 Minutes segment on Autism Apps:  http://www.cbsnews.com/video/watch/?id=7385686n

If you have some ideas or would like to get involved in being able to make Autism Apps: http://hackingautism.org/

Comments { 2 }

My child’s future with Autism, my goals

By on October 25, 2011 in Autism

I can’t set goals for my son, I can only set goals for myself in hopes of making his future a little better. People say the best way to achieve your goals is to write them down. It makes you accountable for them and reminds you of them later.

Anyway, I’ve been blogging for a little while and even had the opportunity to work with a few charities/groups on some things… so it got me to thinking about what I am going to do.

I don’t mean in the vague… “promise to always be there for him” sort of way but in the “what specifically can I do to improve his life by doing things within/for the Autism community” kind of way.

goalsSo here are my personal goals for the future, as they pertain to the world of Autism.

  1. Develop a web/mobile app that will change the Autism Community
    This is something I’ve already envisioned and outlined. I do not have the resources but do have the plan. This, if/when completed, has the potential to benefit each community as well as the global community in incredible ways.
  2. Write a book
    I have begun work on writing an Autism book, one that takes a very different approach from most other books. It’s something I’m very passionate about in that, completing it, may help to raise people’s understanding, not just awareness. This will help in my son’s future in that, the more people that understand between now and then, the better.
  3. Ensure my son is not ignored
    Now, I don’t know how exactly this is to be accomplished… through many smaller goals, I suspect… but should my son desire to speak up about Autism later in his life, in any way he should choose to do so… it is my mission now to make sure that he is not ignored when he does.
  4. Make this my source of income
    This one may sound a bit selfish, but it’s not. I don’t necessarily wish to make money from helping people or “doing good”, however, having to maintain a day job in order to have an income greatly limits my time, resources and ability to achieve all of the things that I would like to achieve. If it was my source of income, I could devote all of my time to doing it. So no, I don’t wish to become rich by any means.. in fact, I could make the same as I am making now, I don’t care. I just need to find a way to work harder, read more, write more, be more involved and the only way I can do that is if doing it replaced my day job.

It’s not a very big list, my skills and resources… as well as my ideas are limited. Having a family of 4 and a day job will do that. None-the-less, the few goals that I do have there are rather hefty.

And now that I’ve shared them with you… I have to do them!

So I will.

Comments { 4 }

The common, not so common, issues

By on October 18, 2011 in Autism

One of the problems I often encounter when discussion Autism with someone that does not know much about Autism is overcoming their need to relate.

Which sounds really odd, doesn’t it?

The Problem

Here’s the problem: for every sign of Autism that I explain, the response is often “but a lot of kids do that”.

And when that happens, you kind of have to go…  “yeah… a lot of kids do do that, but not like this and not with the combination of all of the other things my child does.”

Here’s a quick laundry list of Autism symptoms, off the top of my head, where “a lot of kids do that”:

  • meltdowns
  • not listening/ignoring
  • get aggressive
  • get bullied
  • be shy
  • picky eating
  • have trouble sleeping at night
  • speaking delayed
  • miss milestones
  • be repetitive
  • need routine
  • wander off/elope
  • refuse to look you in the eye
  • be brilliant

The list goes on and on… and when your child is having an issue with one of those things and you mention it to someone, often times the response is “yeah but a lot of kids do that.”

Understanding

same but differentThis is why the DSM tends to combine signs, meaning that your child has to have several signs and meet several areas of criteria in order to qualify for an Autism diagnosis.

The truth is, they’re not wrong. A lot of kids do that!

Here’s the thing… most kids go through phases, most kids don’t do these things to the same extent or severity and most kids don’t do many of these things all at the same time… making it a fully quantifiable disability.

And that is what is so maddening when someone responds to me with “but a lot of kids do that”.

It’s a struggle to admit that they’re not wrong and yet they’re so far off base at the same time… how do you explain that without upsetting them? Especially those stubborn family members that are so certain they’ve “been there, done that” and that you’re just young and “finding out what it’s like”.

See, I can see you sneering right now because we all have those family members.

In these cases, it’s best to remember the 3 key points that make your experience different from theirs:

  1. Most kids go through phases. Autism is for life.
  2. Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
  3. Most kids do these things one or two at a time. Autism means that several or even all of these signs are present.

If you really want to throw it in their face, you can add a fourth point… that their children were just brats and yours has an actual disability. This often results in a discussion about how much medical experts know and don’t know vs now and then, how they just have to give everything a name these days and so on… so it may be best left out.

Chances are, if you’re like me, it will really bug you every time you hear “but a lot of kids do that” but you have to remember that they mean well. They’re either trying to relate what you’re saying to what they know or they’re just trying to show their support, in their own weird way. That they “understand” what you’re saying because they’ve seen it.

Then you can hand them the gluten free food and/or therapy bills and say “consider yourself lucky that not a lot of kids do that”.

Comments { 4 }