New Service in Salt Lake County for Families with Autism and Alzheimers

Today I got an email from the Utah Autism Coalition regarding Project Lifesaver.  Let me post it below:

The Utah Autism Coalition, in coordination with the Salt Lake County Sheriff's Department, Sheriff James Winder and Captain Teri Sommers, is pleased to announce the launch of Project Lifesaver! Project Lifesaver was made possible in large part by a grant from the National Autism Association for law enforcement equipment and training.

The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children who wander due to Alzheimer's, autism, and other related conditions or disorders.

We hope this will be a great resource to our autism community. There have been so many media reports lately and over the years of individuals with autism who have wandered and become lost. Many have been found safe, but others were less fortunate. We hope Project Lifesaver can be a useful tool and bring peace of mind to many of you who worry your child may become lost.

How it works:

Citizens enrolled in Project Lifesaver wear a small LoJack SafetyNet personal transmitter around the wrist or ankle that emits an individualized tracking signal. If an enrolled client goes missing, the caregiver notifies their locally trained agency, and a trained emergency team responds to the wanderer's area. Recovery times for PLI clients average 30 minutes - 95% less time than standard operations.

The LoJack SafetyNet system also includes a database of key information about the client such as a recent photo and insight as to where the person might have wandered if he or she goes missing, and a caregiver support organization that is available by phone and e-mail 24x7 for emergencies.

How to enroll:

There is a $99 initial enrollment fee and a recurring $30 monthly service charge for clients. Families and caregivers can enroll their loved ones by calling 1-877-4-FINDTHEM (877-434-6384). For those families or caregivers who cannot afford the service, they are encouraged to check with their local agency for available options.

For more information, please contact Project Lifesaver at 1-877-580-LIFE (5433) or click here, or LoJack SafetyNet at 1-877-4-FINDTHEM (877-434-6384) or visit here.

A special thanks:

Shanda Ross, the UAC special projects chair, has done an incredible job in overseeing and organizing this project. She made us promise we wouldn't bring attention to her or recognize her in any way. (Whoops, had our fingers crossed). Shanda is an incredible autism advocate, and we appreciate her many efforts in behalf of our community.

The iPad, The New Tablets, and Autism

Since I purchased my iPad, I've had a lot of questions come my way.  Is it really worth it?  Do you like it?  Are you just an Apple Fan-boy, or do you have too much money?  Many of them are questions based on media coverage of the iPad, the assumptions made by technologists on the iPad, and the arguments made by others in the industry that feel threatened by the new medium of tablets.  So, I thought I would talk about why I have the iPad, why I purchase Apple products, and how it relates to my son's condition. 

First, if you have iTunes, open up to the iTunes Store, and then run a search for Autism.  As of this writing, there are 153 apps for the iPhone that come up, and an additional 7 that are specifically for the iPad.  Most of these are flash card apps for learning to write, read, and speak.  But at the heart of these are augmentative and alternative communication software like Proloquo2go, iCommunicate, iSpeak4U, and so on.  That means any person who has trouble talking or is completely non-verbal can use an iPhone, iPod Touch, or iPad as a communication device.  At it's most expensive it would be roughly $700.00 for such a device. 

There is an alternative to using an iPad/iPhone/iPod Touch, and that is to buy an AAC device.  These tend to run in the thousands, between $5000.00 to $10,000.00.  The software is similar (if not the same), and the results are the same.  So, in the end, Apple, with the help of several third party developers, have managed to mainstream a specialty device, making it more affordable for those families that are in need but can't afford $5000.00 for a device to help their child speak. 

Now, you may say that Apple isn't the only tablet on the block, and you would be right.  There are several tablets that currently exist, which are tablet PC's, and can have normal software installed on them.  They generally run at $2,000.00 (roughly), with an additional $200.00 for AAC software to be installed.  So the Apple solution is still a bargain. 

But what about the Android market?  Surely I can't spend all my time looking at Apple when Linux in the form of Android is there.  Well, I checked out the Android Marketplace through AndoidZoom.com, and searched for Autism.  I found a total of three apps, one for recording your voice and matching it to a picture, one for learning phonics, and one to give suggestions for treatment of Autism (which I would consider suspect until it is proven useful).  Not one was an AAC system,  Now, this of course is not Andoid's fault, or Google's, but rather the marketplace that Android represents.  Obviously interest in Autism and helping nonverbal people communicate is not a priority for third party developers that want to target the Andriod market. 

So where does that leave those families that have a need of some assistance and tools, but don't have the funds for truly expensive devices?  Quite frankly, it leaves them with Apple and their iPhone OS lineup.  At least for the moment.  As Android (as an OS) has finally outsold the iPhone (I don't think the iPhone OS, just the iPhone), the market is expanding.  And with the rumored Tablets coming, it looks like things can get interesting.  If the HP Slate ever gets released with a full version of Windows 7, it could present a huge leap forward for AAC devices in the mainstream.

We are at an exciting period in technology.  Smaller, full featured devices are becoming more common, less expensive, more portable, and easier to use.  That means those with disabilities can and will be better served with even more affordable solutions.  So before you start labeling everyone with an iPad a "fan-boi," perhaps you should consider the real, grown-up reasons for tablets and how they can be used.  That's something that is rarely reported on in the Technology columns, and remains a disappointment for me.

Autism and Recognition: Shadows Distract Rather Than Help

The journal PloS ONE has an article submitted by researchers from the University of Torino and The University of Padova in Italy regarding the sensitivity autistic children have to shadows.  Neurotypical children tend to use shadows to help recognize objects while observing their world.  As such, a shadow can be of help in a learning environment. 

The research here recognized a significant measured delay in identifying item by shape and position using shadows.  Basically, because the shadow was adding visual "noise", the children took longer to recognize the objects when compared to the neurotypical control group, and in comparison to the same objects without definite or pronounced shadows. 

So what does this really mean?  Basically, it means when you try to teach your child with autism, you need to make sure you have multiple light sources within the room to remove as much of the shadow as you can.  This will reduce the presence of visual "noise", and help the child better engage with the objects around them. 

For those who have autistic children that tend to be visually sensitive anyway, this is probably already being managed.  For those of us who haven't had a child start going into a meltdown while walking into a badly lit building with flickering florescent lights (which sure bring on migraines for me), this may be something new. 

So how do you get multiple light sources?  Two lamps can do it, one on each side of the room.  Most commercial environments (or industrially built buildings like schools, churches, etc.) will also have multiple light sources.  But how many light sources do you have in your house?  You may have natural light, you may have a lamp or two.  A suggestion that could save some frustration would be to use a glossy or semi-gloss, light-colored paint to help reflect light.  More than one lamp or lighting fixture in a room, and generally at opposite sides.  There are a lot of potential solutions to help maximize the help for your child. 

Noisy Circuits vs. Mirror Neurons: A New Study

Recently researchers from Carnegie Mellon University, University of Pittsburgh, and New York University published an article in the journal Neuron regarding the responses of those with Autism using their "mirror neurons", or neurons that fire when a person performs an action, and also views an action being performed.  It has been a theory that diminished action within the mirror neurons would cause autism, supported by the idea that autistic children cannot learn from mimicking others.

This study placed 13 autistic adults and 10 neurotypical adults within an MRI machine and had them perform actions and observe actions being performed.  The results showed that in both the study group and the control group, the performance was almost identical.  Their conclusion is that the study argues against a failure in the mirror neurons as a cause for autism. 

When the researchers were asked by the Pittsburgh Post-Gazette as to what could be causing autism, they said, "noisy circuits".  Noisy circuits?  What's that?  Basically it is recircuiting the brain with neurons, a large abundance of neurons, and often times an overabundance of neurons that fire at the same time to the same stimuli.  This would account for the varied symptoms of Autism, along with varying levels of severity within autism.  It would also account for the increased size and/or density of the brain in autistic individuals. 

So, who is right?  I have always sided with the noisy circuits theory, and was not even aware of the mirror neuron theory until the article has come out.  Both, of course, are theories, and require more research to be specific to their cause.  Still, it's good research that is being done, and that alone gives me some hope. 

Homelife and Autism: The House Design Matters

Since our son has become more assertive and mobile (having reached the ripe old age of 5), my wife and I have found that many of the traditional tools we have used to help keep our son safe are no longer working.  For instance, the latch on the fence in the back is easily reached and used now, so he is no longer able to play in the back yard on his own.  He has figured out the lock on the refrigerator door, which he has demonstrated quite regularly yesterday.  And he has no problems using the sliding glass door, door handles, locks, dead bolts, etc.  Needless to say, our son has figured out that he can easily get outside whenever he wants, in various states of dress and in varying weather conditions. 

These are things you are never told when your child is diagnosed autistic:  that you need to alter your home lifestyle in order to best protect your child.  Now most parents would need to do this anyway, and promptly baby-proof their homes.  We did, months before our first son was born, and continued with our second son.  But now our son is old enough to circumvent many of the baby proofing techniques (like locking cabinet doors, door handle covers, and power outlet covers), and has begun to explore areas that he has previously been unable to reach.  Some have been a challenge, some a frustration, some I'm actually proud of his achievements (he accomplished it faster than I expected), but some is very scary.

But the most terrifying is when he runs outside, and we do not know that he has gone.  For this reason, we have decided we need a new home.  "What?  A new home", you ask?  Yes, a new home.  It may seem like a very expensive proposition, but let me explain our problem with our current house with regards to our son. 

The first problem:  The back door and sliding glass door are both blocked from view from the front room.  This means if we are sitting in the front room we cannot see when our son leaves through the back door or sliding glass door.  As neither is particularly loud, we cannot hear him either.  That, and sliding glass doors are difficult to set up special alarms that go off with a separate tone based on the door.  The blocked view is caused by the division between the two rooms by what was once the pantry and the stairs.

So, we picked a house plan that we liked, paid the deposit for the land, and we are now in the process of getting approval for the new house.  There are lots of other fun things that can come with building your own house from the ground up, but the deciding factor of this move was the needs of our son, and the sanity of his parents.  Too many times he has run across the street to visit the neighbors yard, completely without our knowledge.  It's scary, because he doesn't look for cars coming and just runs.

Along with the new house we will be able to get fencing and enclose the yard to contain our son to that level (and eventually his dog).  We get to design and landscape the yard from scratch to add trees that will not only provide shade, but perhaps some fruit as well.

Weekend Roundup: Flash and Politics

Another political post today, and I thought I would start with Flash.  Lately there has been a lot of back and forth between Flash and Apple, each attacking the other over the future of Flash.  And today, Microsoft's Internet Explorer group essentially said that while Flash is used now, there are issues, which is why their HTML5 support in IE 9 will support the H.264 codec.  Not a happy day for Flash, and quite a few people in support of Flash made some attacks to both Microsoft and Apple on this post. 

So, I suppose with the last bastion of browsers moving to HTML 5 and H.264, what would be the future of Flash?  I think it's pretty obvious, Adobe will probably work in support for H.264, so current Flash developers will be able to use the same skills they have now to publish to the Web for all platforms.  Additionally, they will probably use Flash to develop apps for platforms other than the iPhone/iPad, meaning for WebOS (if HP keeps it), Android, and Windows Phone 7.  So Flash isn't going away, even in the long term, though it's use as the only video codec is rapidly becoming highly competitive.  So the politics of technology marches on, and without the help of the Democratic or Republican parties.  Go figure. 

For those of you who do develop for Flash, how are your projects working on mobile platforms?  Let me know, I'd love to get a survey and see where mobile app development is moving for Flash!

And the Chicago Sun-Times reports that President Obama will not have to testify in defense of former Governor Blagojevich.  I'm almost sad about that, because I wanted to see how the Administration and the Judicial would take such a request.  I love constitutional issues like that, it makes for good reading.  There is still a chance for it to come up in court of course, assuming it get's appealed to the Supreme Court.  Something to look forward to in a couple of years, I suppose.

A Weekend with the iPad: A Review

Last week the University had a sale for all University Staff and Faculty on Apple products:  no sales tax.  It was a perfect excuse to get an iPad.  I've wanted one for quite some time, and finally, after my wife had a chance to play with one the weekend before, I was given the OK to plop down the cash to get one.  So, on Tuesday morning at 7:20 AM I got in line for an iPad.  In line is right, there were over 50 people in front of me, and it seems that the Bookstore sold out of all the iPads by the time I got to the register.  But I was able to get one on order.  It was the longest week of my life, waiting for the iPad, but it finally came in on Friday. 

It's much smaller than I thought it would be, with the surrounding bezel smaller than I thought I remembered seeing on the device Steve Jobs showed in January.  It is also very hefty, feeling very solid.  I thought I might have needed a hard external case for the iPad, but it the device is solid enough I don't worry about it now.  The only thing I would be concerned with is scratching the glass, which can be fixed with a good screen cover. 

So what was the purpose for purchasing one?  Well, I had a laptop that was a G4 Powerbook, and it was starting to show it's age.  The battery didn't run long enough for me to be able to do anything while going to work.  And mostly I just wanted to write or play games while listening to music.  I could play games and listen to music with my iPod Touch, but I couldn't for the life of me get any writing done.  The screen was too small to type well, and so many ideas would be lost in the frustration of trying to type it out with my thumbs (I am not a texter, and therefore I have no aptitude for texting).  I wanted something larger that could take the place of my Powerbook and fulfill those needs. 

Well, I did look at a Netbook for a long time, thinking I could use one, but they have one problem:  their clamshell design.  Not that huge of an issue, unless you are sitting in a cramped seat on the bus and want to type,  The clamshell monitor cannot open far enough for me to see what I'm typing, and while I can touch-type pretty well, I would rather not guess at what I am writing.  So that idea was thrown out.  I wanted a tablet like the iPod Touch, but with more space. 

Finally, I got the iPad.  My first impression using the Notes app was that it was amazingly easy to type on, as long as I didn't used my pinkies.  That's because the Shift key isn't quite where it should be for a normal sized keyboard.  But, as I only need it for some punctuation and capitals (which Apple's spell check often fixes), I don't worry about it too much.  And if I really need a full-sized keyboard while on a long trip (like on Vacation), I can use a bluetooth keyboard paired with it.  And I like the fact that I don't need to worry about the hard drive failing, keys being picked off by my son, or any other such nonsense that comes with moving parts.  A capacitive multitouch screen is perfect for traveling.

But the real thing that makes the iPad, or any new device, is the software.  I tried running native iPhone apps on the iPad, but most were very pixelated, looking terrible in general.  So I limited them down to those that looked the best from what I had, and started looking for iPad specific apps. 

ForScore

I sing in a choir, and often I have trouble turning pages on music.  Ever since I first saw the iPad, I thought how great it would be to be able to have it display music for me.  Of course, I would need to have a way to scan in my music and use it, preferably as a PDF.  But it should be much more than a PDF viewer, because I need to be able to make annotations directly on the iPad while I'm practicing.  ForScore does all that, and gives me a metronome that is silent (visual outline that blinks to the time) so I can keep on beat.  All in all, it's a great app.

Pocket Legends

Some games are pretty basic on the iPhone and iPad.  Some have fantastic graphics and 3D effects.  And still many say that an MMO (Massively Multiplayer Online) game would be too restrictive on the iPad.  Well, as a proof of concept, I present Pocket Legends.  This is everything I have wanted in an MMO, including the option to quest alone (you start your own quest, password protect it, then continue from there).  It's great because it shows just what the iPad is capable of doing with the right hardware in place.  Honestly, I see the possibility of a true 3D Second Life or WOW client being made for the iPad...  if someone makes the effort, that is.

Cloud Readers

This is a great PDF reader app, and solves a problem I have with iBooks:  it will only read ePub files, and I have some PDF eBooks.  And while I can't read encrypted PDF's with the Adobe DRM in this app, I can read all my other PDF's just fine.  It's a great little app, and I'm glad to have it. 

eBook Readers

I love to read, when I have the time, and so I tend to collect large libraries of books.  The problem is, I want to have them with me wherever I go, and so far I don't have the backpack big enough to fulfill this need.  So I have been downloading and purchasing eBooks for many of my reading needs.  I started on my iPod, and it worked great, though I couldn't see a lot of the book at once.  I really wanted to have more of a view of each book, and so the iPad makes eBook reading nice.  Don't get me wrong, I loved reading on the iPod, I just like being able to use the full real estate on the iPad for reading as well. 

Of my eBook readers, I think I like iBooks the most for the experience, Kobo for the night reading option (black background with white text seems to be easier to read for me), and I like the Kindle for overall device compatibility (syncing).  Kobo offers that as well in it's fashion, as will iBooks when iPhone 4.0 comes to market.  I would love to see a Stanza iPad-native app come soon, though, as Stanza was my favorite eBook reader on the iPod Touch. 

So that's a quick outline of some of the many iPad Apps I've found useful in their full real estate glory.  I'm looking forward to seeing quite a few new apps in various areas replace the iPod apps I currently use because they do not have a satisfactory replacement. 

But needless to say, I see tablets like the iPad quickly taking over much of our mobile experience, relegating the Notebook to either replace the Desktop, or breathing new life into the Desktop platform. And I like my iPad.  ^_^

SME's and Instructors: The Good, and the Difference Between Them

I was talking with my friend Joseph about a training that he had in Puppet, and the instructor's assumptions when they started the class.  Now, before I start, let me tell you that Joseph was a trainer and instructor with Guru Labs, a well-respected source for Linux training.  He started relating to me the experience he had with the trainer, and how he reacted to the training process.  I immediately identified the trainer as a SME, or Subject Matter Expert.  This prompted a quick discussion on the differences between the Subject Matter Expert and the Instructor or Trainer. 

If you have been following my posts for a while, you know that I have a different definition of what a Trainer is, or rather what a trainer should be.  Trainers are those who not only know their subjects, but know how to convey the subject to the student without exceeding their cognitive load.  There are a lot of tricks to doing this that anyone can learn, but the real instructor can recognize and adjust to their student's cognitive capabilities. 

At the heart here is the cognitive load.  That is, the level a student can reach before they feel overwhelmed.  Some do so quickly, either because they are new to the subject or they have inhibited their learning somehow (no breakfast, poorly hydrated, medicated, distracted, etc.).  A great instructor can adjust the environment, terminology, and teaching methods to appeal to the student's learning ability. 

So where does the SME fit into this?  A poor SME can be easily identified by how they react to a question to which they do not know the answer:  they lie through their teeth.  They make something up that sounds plausible, and then teach it as though it were fact.

A good SME will do the research, though usually they do it during the training when they should be moving on in the lecture.  This means they keep the students on hold, often bored, while he tries to find the answer.  A bad instructor will do this as well.  Also, it's well worth noting that a good SME can become a good Instructor, with proper experience or training.

A good Instructor will place the question on hold (often after polling the students present to see if anyone has had a similar experience), and then will do the research after the lecture and while students are going through exercises.  He will then immediately come back when he has the answer to let everyone know what the answer was, and as a bonus point, tell them where the answer was found. 

There are a lot of other clues to telling a good instructor from a good SME, but this one is the one that came up in our discussions.  Does anyone else have a similar experience, or one they would like to share?

Week In Review: Politics and Training

This week has been really interesting, and really busy.  For that reason, I'm doing another week in review (and it's only Thursday!). 

First, Apple Training.  I taught the Mac OS X 10.6 Server Essentials course this week, and had two students.  Both were sharp, but one, Aaron Hix, works with Apple.  It was fun to talk with him, learn some things from his experiences, and talk about people we know.  I also got to see him at work (three laptops, an iPad, and an iPhone all running).  It was great fun, and we got a lot accomplished, and quickly!  It was the first time the Server Essentials class finished in 3 days instead of 4 (though we did skip exercises that both students were not anxious to go through). 

Second, I ordered an iPad from the Campus bookstore.  They had a sale where sales tax was not included in the price of all Apple merchandise, so I thought I would go for it.  Unfortunately, they didn't have any iPads in stock (none!  Not even the 32GB which is supposed to be the unpopular one).  So, I placed the order and paid for it anyway, and I'm still waiting for it to show up (it could be in as late as next week).  In the mean time, I'm getting my apps ready, my pictures put together, and other fun things that come with getting a new device. 

Third, I became a Master Trainer for Apple IT classes, which means that we at the University of Utah can offer T3 courses.  It's pretty exciting, and I'm looking forward to some being scheduled.  I also found out that we are unique among Apple Authorized Training Centers because we are able to run classes with just two students.  Other AATC's usually need to have 5 to 8 to run a class.  We are hoping this means we get more students coming to our site, knowing we won't cancel on them. 

Now for the Politics.  Apparently former Illinois Governor Blagojavich wants to have President Obama testify in his corruption trial, as part of the defense.  It will be interesting to see if a federal judge will try to subpoena the President in this matter.  My guess is he will not find reason to do so, though it's always possible.  Even if it doesn't happen here in Federal Court, it may be taken to the Supreme Court where the President will be asked again to testify.  And if asked, will the President make a personal appearance, or will he participate in some other way?  I'm keeping my eye on this one, just because it's an interesting situation for the Judicial and the Executive branches. 

Apple vs. Adobe:  An interesting game of attacks, primarily from Adobe.  All over Flash..  Sure, Flash is a big part of the web (advertising, at least for my part), and it's quite popular.  But Apple doesn't want it on their iPhone or iPad.  So, Adobe tried to work around it by using Flash to develop apps for the iPhone and iPad, which Apple killed with the 4.0 user agreement (which also killed Titanium from Appcelerator).  Rumors were flying about Adobe suing Apple, but today they attacked Apple by saying they would rather work with Open platforms with their proprietary platform than with Apple's closed ecosystem that supports open standards.  Apple fired back, the first time the Company has said anything publicly, while Adobe as a company and as individuals have been spewing forth hatred and ire at Apple. 

Now, I really like Apple.  I teach about their technologies, and I'm developing for the iPhone using their tools (mostly because I can't use Titanium for my class I'm developing).  I like Adobe.  Photoshop is great, as are many of their other products.  But, much like fanbois for any technology that attack others for their choices, Adobe as a company has been very, well, surprisingly unprofessional.  So has Steve Jobs in his remarks, though they were never made publicly (I don't consider a company meeting public, as it's within the private company). 

I come away from this liking the experience I have with Apple's tools, not having stupid Flash ads pop up over websites I'm trying to read, and enjoying the idea of having open standards grow faster on the Internet.  I also come away from this with a bad taste in my mouth for Adobe.  Perhaps I should start to look at the GIMP a bit more.  Also, I come away with having less respect for Steve Jobs as a person, though he seems to be doing very well as a CEO. 

Anyway, that's the week in review.  Hopefully there will be some new news on the iPad soon, as in tomorrow.  But if not, I'll be talking about it when I finally get my hands on it.

Hands On with the iPad: First Impressions

I've made posts about the iPad way before it was even the iPad, starting back in 2008.  When they announced the iPad, I was excited, impressed, and a little disappointed.  But since then, I've been converted.  Why?  Because it seems almost like Cupertino had been reading my blog posts, and built the thing just for me.  But that was from looking at videos and reading the keynote address.  What about real life?  How would it stack up?

Well, I haven't purchased one yet, but I have played with one at the Apple Store, and at the University of Utah's bookstore.  Here are my impressions:

The Keyboard
Unlike a lot of other people out there, I like the keyboard.  It's big enough in landscape mode to type with, and I was pretty proficient with it when typing.  I can also type well without looking at the keyboard, which is a bonus.  The only thing is the shift keys don't seem to be in the same place, so I would need some practice with it.

The Real Estate
I love the large screen.  It's actually smaller than I thought it would be, though it's about the same size as my 12" Powerbook G4 I purchased years ago.  While I can't yet replace a laptop with it, I can definitely replace what I've been using my laptop for, and leave all the heavy lifting up to my iMac at home, or my Mac Pro at work.  I can't wait to see all the awesome Autism apps that will be coming to the iPad. 

The Need
Yes, I think I need one.  Why?  Because I want a "computer" that is easy to use and gets out of the way when I use it.  I need something bigger than my iPod Touch to type on while on the go while still fitting within my seat space while commuting on the bus and TRAX train (those seats are not very clamshell-laptop friendly, let me tell you!). 

So, all in all, I am a happy camper, and look forward to the day I get one (which will be soon, I hope).  Do I think it will be the best tablet out there?  I think it will be for me, but I'm also excited to see how the HP Slate and various Android devices will act when they are released in the future.  The tablet format has finally found the technology and the uses that it needed to be useful.

Children, Time Management, and Autism: The Schedule Book

I have been thinking a lot about children and time management in relation to a project I'm working on for my son.  The basic premise is that children thrive when they have a structured environment, and that their structured environment doesn't have blank spaces in it.  That means the current project takes as long as the time it takes to get to the next project.  In fact, if you think about it, the same could be said about most people's scheduling habits, except we as Adults tend to have "background noise" tasks to do (check email, Twitter, Facebook, News, email again, etc.). 

So in my musings, a schedule for children in general should be a start point, and a finish point ONLY if they have something else to do.  If you don't do this, children tend to get a little rowdy and bored because they need at that time to figure out what to do on their own.  That way they have a flexible schedule that will give them time to complete a task or series of tasks.  This doesn't work 100% of the time, but for a general schedule option, it works out pretty well. 

So how does this relate to Autism?  Autistic children are in desperate need of set schedules, and often get irate and have melt-downs if they do not follow the schedule.  Scheduling for an Autistic child or person needs to have a beginning and an end, and the end needs to lead into another part of the schedule.  "Background noise" time doesn't really work for an Autistic child, and they often get lost within their task at hand instead of moving on to their next project. 

Now, let me qualify these observations:  they were made after attending my son's Preschool class and seeing how structured the class time really is.  Students, even if they finish their tasks early, were given a new task to perform that was within the scope of the task time.  So, for instance, if they finished with Art, they would move on to Book Reading.  If they didn't want to play with the blocks, they had time at the swing.  It all depended on how the zones were broken up. 

Now, move that to a non-structured play environment, and my son becomes excitable and quickly floats from one project to another.  He doesn't have a schedule to follow, and so often misses important tasks (like using the potty).  So structure is something that he needs regularly. 

And that is part of my current project.  I'm creating a Schedule tool that will provide structure based on the beginning of the next task, instead of the beginning and end of a task.  Many children with Autism have "Schedule books" that they reference and use, and my son works well with his at School.  Hopefully this project will help him work well with it at home and at daycare as well. 

Autism Genetic Breakthrough: Blood Test and Treatment May Be Possible

Laura Shumaker, a blogger on the San Francisco Chronicle, highlighted a study by the Department of Biochemistry and Molecular Biology at the George Washington University Medical Center in Washington, D.C. outlining the possibility of using a blood test to find genetic markers for Autism, and providing treatment.  The study, published online at the Federation of American Societies for Experimental Biology Journal, identified two genes of protein production that are reduced in those with severe Autism.  The interesting thing is that providing a "cure" for this type of Autism seems just as simple as providing gene-therapy to increase the production of the BCL-2 and RORA proteins. 

Now, before we get all excited in thinking that Autism may be cured within our lifetime, let's keep in mind that this is a recent discovery that still needs to be reproduced and proven, and that any gene or drug therapy that will come out of it will be at least 5 to 10 years in the making (I would wager, at any rate).  But the important thing that came out of this study is that the genetic material could be something as simple as a red blood cell, and treatment can be equally simple. 

The study was funded through a grant by Autism Speaks, an organization often criticized by many in the Community for it's goal of "curing" Autism.  For those with severely Autistic children, this could be for which they have been praying.  They may soon have a way to manage the condition of Autism in their children, allowing them to perform in school and eventually become contributing members of society as we hope all our children will be one day.  Futures seem bright, treatment is medical instead of behavioral, and that means Insurance Companies have fewer and weaker arguments against covering Autism as a diagnosis. 

Just imagine how far we would have been if the Autism community had not been distracted by the MMR controversy.  If you are interested in reading the study as it was published, the methods of testing, and the rigor the process had gone through, the full article is available here: http://www.fasebj.org/cgi/content/abstract/fj.10-154484v1

I'm not sure if everyone can download the full text or not, as I am looking from within the University of Utah's network, which has registered for a number of pay-only online subcriptions.  If nothing else, you can read the Abstract. 

The Lasting Legacy of Irresponsible Autism Claims: The Resurgence of Measles

NPR has run a story about a resurgence of measles tanks to parental fears of vaccines.  It talks about an outbreak of this extremely contagious virus in Vancouver, during the excitement of the Winter Olympic Games.  Foreign travelers carried the virus and infected two Canadians and a visiting American, which has lead to a spread of the virus to 16 people so far.  Of those 16 people, half come from the same family where the parents rejected vaccination for their children.  That's 8 people who were infected because they were not protected.  And why where they not protected?  Because a friend of the family convinced them not to get vaccinated. 

And more families are choosing to leave their children vulnerable every year, according to the article.  In San Diego County alone there are at least one thousand families who have opted not to let their kindergartners get vaccinated, which is 100 more families more than the last time San Diego had a measles outbreak, where 75 children had to be quarantined to keep them from infecting other children in the same school. 

And the number one reason why these parents don't want to have their children be vaccinated?  Because they think the Government is in a major conspiracy to poison their children into getting Autism through the vaccines.  They may not say it outright, but they fear that the Government is covering up facts that connect Autism and the Measles, Mumps, and Rubella vaccines, thanks to the misinformation published by "Doctor" Wakefield and perpetuated by celebrities like Jenny McCarthy. 

The problem is, this misinformation has been spread so tightly and interwoven to completely into our culture that parents don't believe the scientific evidence that has refuted such claims.  Instead they take their children's lives into their own hands and opt not to become vaccinated.  As a result, when our vaccinated population reaches below 95% (which it is in many Western cultures amongst the school-age children), outbreaks occur and spread.

While I can understand that parents want to do everything possible to protect their children, I don't agree that not protecting them from a preventable disease in order to "protect" them from a disorder that is genetic in origin is a smart thing to do.  I vaccinated both my sons, even though my oldest is Autistic.  That's because the evidence pointed to genetics for Autism, and not as a result of being vaccinated. 

To those who continue to perpetuate the fear, uncertainty and distrust of vaccines by invoking the Autism card, I would like you to behold your legacy.  Whole families of children who could potentially die or receive permanent brain damage from the measles. 

Let us hope families quickly realize the Genetic causes of Autism and start protecting their children again.

April is Autism Awareness Month

This month is Autism Awareness Month, and there are several events across the nation to bring awareness of those who live with Autism in their lives.  In Salt Lake City, there is the Walk Now for Autism, which is a fundraiser for Autism Speaks, which seeks to increase our knowledge of the condition and searches for a cure.  But regardless of which side of the autism cure/acceptance debate you are on, there are a lot of informational booths there.  I would highly recommend attendance if you have someone in your family who is Autistic.  It's scheduled for May 1st, which puts it just outside of the month, but it's definitely worth attending. 

The Layton Krispy Kreme Donuts establishment will be selling iced blue donuts on Friday, April 2nd in support of Autism Awareness.  They encourage you to wear blue in support of Autism. 

Real Salt Lake will have a special event on April 25th in support of Autism Awareness, and on the same day the Davis Master Chorale will have a special Gloria event for families with Autism in Davis County. 

It's also a good month to harass your representatives for Autism insurance reform.  Currently Autism in Utah is not considered a medical condition, and therefore diagnosis and treatment is not covered by health insurance.  There have been and will continue to be bills up on in the State regarding healthcare company requirements to identify Autism as a medical condition, which should at least cover the diagnosis.  The recent Healthcare Reform bill that President Obama signed into law requires behavioral therapy to be covered, but does not require Autism to be recognized as a medical condition.  Until such a requirement is identified, there are still loopholes for families living with Autism.

So what do you intend to do for Autism Awareness month?  Do you have anything planned specifically?  Feel free to post your Autism Awareness Month events in the comments below!

The Future Of Autism: Cures or Neurodiversity Accommodation?

The New York Times ran an article on the stalled nomination of Ari Ne'eman, a young man with Aspergers, to the National Council on Disability.  Mr. Ne'eman is waiting for Senate confirmation, and would be the first person ever to join the National Council on Disability with Autism.  But he is finding some critics that don't want him on the council because of his position that neurodiversity should be the goal, and not cures for autism. 

This brings up a very interesting discussion on what the future of Autism research should be:  cure or accommodation?  If you ask a parent with an Autistic child, you will get an answer as different as the child is from others with autism.  That's because Autism is a spectrum of disorders, and not a single disability.  Because it's a spectrum, there are a number of different ways it can show, ranging from low functioning autism (cognitive issues, low development, etc.) to high functioning autism (brilliance, but inability to socialize because of missing cues). 

Those with high functioning autism can generally take care of themselves, though they grow up bullied and end up being ostracized from society.  Generally they will become brilliant scientists, professors, computer programmers, artists, etc. that do well when working in their field, but shun the lime light and attention from others.  These are those who want to see neurodiversity being taken seriously, and have their differences be accepted instead of being targeted by society.  Mr. Ne'eman falls under this category, and I have to admit I have in the past wanted this very same thing.  After all, my older brother was constantly bullied in school because he was seen as an easy target based on his autism.  I fear for my son as well, as he is also very high functioning. 

But there are others out there who have no immediate hope for being able to take care of themselves on their own.  They tend to be self destructive, go through seizures, are completely non-verbal, and also tend to test low in their IQ evaluations (if they can even be tested).  They are unable to function without assistance, and therefore no amount of neurodiversity acceptance will help them beyond their parents homes or a nursing home once their parents are no longer able to assist them.  I don't have a child at this level, so I hesitate to suggest that they as parents would like to see their children cured, but I would venture to guess that many would like to see a cure for their children. 

So which is right?  Well, I think it should be pretty obvious that both positions are right and therefore have the right to be heard.  I think that neurodiversity for high functioning individuals should be practiced, and those who are eccentric should be embraced within society.  But I still think that a "cure", or a way to manage the severe effects of autism needs to be researched.  Addressing both sides of the issue is very possible, and does not require a whole lot of money vs. addressing just one side of the coin.  Sure, medical research is very expensive (and you thought your Insurance Company got all the money?), but social change shouldn't be.  That comes from what we teach our children. 

Perhaps one day neurodiversity will no longer be an issue, because it will be practiced by everyone.  And hopefully one day a method will be developed to help manage severe autism for those who so desire it.  Being able to address both sides of the coin is one of the brilliant advantages of having an open, democratic society without the burdensome requirements of micro-managed regulation.

Preschool and Autism: Visiting my Son's Class

Yesterday I had the pleasure to be a helping parent in my son's Autism preschool.  I've wanted to help out before but I've not had the time until now, and I'm very grateful I was able to help. 

It started with Warm Up, where my son (and other students) walk up some stairs, down a slide, jump on the trampoline, and finish up by checking their schedule.  My son didn't do too well here, because he was afraid I was going to leave him there.  Normally my son works well in the class, but he's very clingy to me and really wanted to have a full day just playing with me. 

When finished, we worked at Table Toys, where he showed me he is able to remove parts from his toy and put things back.  His teacher told me that he is the only one that has figured out how to do this, and she was impressed.  I told her I wasn't surprised, as he takes our vacuum cleaner apart at home, and then puts it back together again. 

Once finished, he had his potty time, which is part of his schedule.  It's all part of his potty training, which they are excited about.  So many students this year are being potty trained, and it's exciting.  If you have an Autistic child, you probably know how difficult it can be to potty train them.  If you don't, just imagine that your child isn't potty trained at 3-4, but rather 5-10.  Part of it is because they don't tell you they want to go potty, and part of it is because they are so involved in their current activity that they don't want to interrupt it by going potty. 

Next was more Table Toys until Circle Time.  Circle Time was interacting with each student with song, learning their Letters, Numbers, and Colors.  Things that are expected from Preschool and prepares the children from Kindergarten.  Once done, they had their sensory activities, occupational therapy, work on fine motor skills, etc.  My son loves going to the sand table, and had a blast.  He then did well with his glue and art, though he preferred to spread the glue on his arm (so he had something to peel off).  Then he spent time on the swing, which he absolutely loves. 

Then he had potty time again, and they played outside with the other preschool class which is either mixed or a neurotypical class.  They all had a blast, though my son tried to run out through the gate to get me to chase him.  I know, because he stopped just outside the gate and giggled.  Once done, he had snack time, and I got to see how they use his picture exchange to get him to ask for things.  I think Jonathan wasn't too excited about this because now I force him to use the pictures as home.  Once done, they had some more play time until their final circle time, and we headed for home. 

It was a great experience, because I got to see Behavioral learning in action, with Environmental applications and Contstructivist methods being used to help the children build on their successes.  While my State has a number of short-comings (like not viewing Autism as a medical condition), the Granite School District has a very well staffed and well managed Autism program for Preschool.  The teachers and Aides are excellent, and I'm grateful for their work. 

Health Care Reform: Why It Doesn't Work For My Family

Before you start blasting away at my statement above and claiming I'm an arrogant Republican sympathizer with little or no regard for the little people, let me tell you why it doesn't work for me. 

In the over 2,000 pages that this comprehensive health care reform bill has, there is not one mention of Autism being covered by health care.  Not one.  That means that of the over 300 million American citizens in this country, an estimate of 3 million will not receive the necessary diagnosis or treatment to become useful citizens.  Think of that number:  3 million. 

But, you might say, the status quo isn't any better, and I should be happy for those that will be covered for their colds, flu, and catastrophic, life-threatening illnesses that can bankrupt families.  My response is that you obviously don't have an Autistic child, and therefore are not aware of the expense that comes with the diagnosis. 

First, there is the diagnosis itself.  Most healthcare insurance companies do not cover the visits to a psychologist, each costing quite a bit.  Because health insurance doesn't cover the diagnosis, it therefore falls on the parents to fit the bill.  And if the psychologist can't pinpoint where on the spectrum the child is, that means more visits, and more added to the bill. 

Then there are costs with special schools, training, etc. that are all expensive because of the increased teacher to student ratio.  Sure, you may think it's an outrage that there are 30 children to one teacher in a typical classroom.  But imagine of each of those children were Autistic, unable to sit still, unable to look the teacher in the eye, and bursting out into rages of melt downs because of sensory overload.  You CAN'T have a high ratio of students to teachers for autistic children.  Therefore, schools cost more. 

Because the cost of schooling for autistic children are so high, often School Districts will not provide those services.  This means the children are either home-schooled or they are sent to very expensive private schools, costing tens of thousands a year.  It's like buying a new car and paying for it in cash EVERY YEAR.  And you don't get a tax credit for "cash for clunkers".  That doesn't work with education. 

Finally, there is the cost of long-term care.  Children with Autism will eventually grow up to be adults with Autism, adults with varying levels of ability based on the severity of autism on the spectrum.  As such, they need some sort of organized long-term funds to provide for them when you as the care giver has passed away.  Some States provide long term care, but how much longer if they start to cut into their services to balance their budgets?  It's a scary future out there for those who are in no position to protect themselves. 

So you can talk about the poor getting healthcare, you can talk about the historic focus of this bill that Congress is trying to pass.  But as I already have healthcare that covers my family, and as it doesn't help provide for the needs of my son at a National level, the bill does nothing for me.  It doesn't protect or provide for my son's condition, a condition that has been shown to be genetic in origin, and therefore truly medical in practice.

In short, the bill is flawed, and I have little hope of seeing any provisions added at a later date.  I'm sorry, Mr. President and all members of Congress, but you have failed my son in your efforts.  My son, and one percent of your children and grandchildren. 

That is why I can't get excited about Healthcare Reform. 

Genetic Testing for Autism Gets Better: The Chromosomal Microarray Analysis

US News and World Report is running this news story on a more effective genetic test for Autism. The report tells of the three genetic tests that were run:  G-banded karyotype testing, Fragile-X testing, and Chromosomal Microarray Analysis (CMA).  In the tests preformed on 933 people between 13 months and 22 years, the two earlier staples of genetic testing performed at 2 percent for G-banded karyotype testing and 0.5 percent for Fragile-X testing.  But the new CMA test performed at slightly more than 7 percent in it's matching of genetic diagnosis to behavioral diagnosis. 

This means that of all those tested, the new test was able to conclusively link a genetic, chromosomal aberration to Autism.  This is huge for genetic testing, as it increases reliability for the genetic test method more than three times.  But it's still a low number.  Very low number, making genetic testing still too costly and inaccurate overall when diagnosing autism.

So why is this news so important?  Because it shows that we as a society are coming closer to understanding Autism and it's genetic markers.  As such, we are starting to understand Autism more, and that means working on ways to help manage it in more severe forms. 

But what about those that cannot be genetically identified?  Well, again, it all comes down to how Autism is diagnosed versus a relation to the conditions in the nervous system that cause Autism's symptoms.  As I have mentioned before in a number of other Autism posts, the Autism Spectrum is huge, and is used to encompass several specific symptoms.  These can be sensitivity to sensory stimuli, lack of eye contact, lack of social skills, enlarged or denser brains, etc.

And as geneticists have pointed out, there are a number of genes (up to 22 now), of which any one can cause some or all of these symptoms.  And the more genes that are present, the more pronounced the symptoms.  And what's really interesting is disorders like Fragile-X, which causes run-away stimuli in the neuron synapse firing, causes the same or similar symptoms as the denser brain of the Autistic.  So how do you tell them apart, behaviorally?  You can't.  It requires genetic markers, such as standard facial compositions of those with Fragile-X, to tell them apart. 

And, of course, it all really comes down to how to help those with any disorder like Autism, and that's education.  Making education available to those with Autism to help them function in this world with their disorder (and not fight it) is the best possible option.  Part of that is through behavioral therapy, part of that is through family (particularly parent) counseling to help everyone become part of the educational process.

So I applaud those working on the genetic testing for Autism, to help locate those children who are in need at a very early age and prepare parents for their responsibilities early.  And perhaps, just perhaps, insurance companies across the country will understand that Autism is something that needs to be covered, at least to the point of diagnosis. 

Autism: No Resolution In an Hour, but a Life-Long Pioneering Trek

Recently I’ve been reading about the depiction of Autism, specifically Asperger’s, in the media. This character has elements of it, but it’s not openly discussed, this other child has elements of it, but the writers don’t want to pigeon-hole their characters, etc. And then I read that the show, Parenthood, based off of the movie of the same title, will have one of their children diagnosed with Autism. Apparently the concept was so ingrained in my concerns that I had a dream about such a sitcom.  The following were the results.

The parents discover that their child is different than other children, and want to know what to do. They go to the school councilor, who then tells them their child might be autistic, and recommend they see a psychologist. This is serious stuff, not a big laugh that you would expect, but sets the tone for what will come.

So the parents go home and talk with their friends and family about the “diagnosis” (note, they have not actually gone to the psychologist yet), and they start getting advice. The first thing that comes up, of course, is the threat of vaccines, and how vaccines are poisoning our children. One friend and/or family member tells them they need to sue the vaccine companies. Another friend/family member tells them they need to get some “healing crystals” to place around their child at night and around their neck during the day. This is to “heal the spirit” of the child and make her well. And yet another family member turns to the couple who is by now scared out of their wits, and tells them that it’s all heavy metals anyway, and they should have their child purged with chelation treatments. Where did they get all this great advice? From watching a talk-show's interview with some celebrity with little to no education.

The parents are by now really frightened, the wife is crying, the dad is numb. Now, here is the twist: the dad is a hypochondriac, and thinks taking pills are the answer for everything. He says they are going to his favorite pharmacy to get something to fix their child. The mother, still trying to work through her own feelings, doesn’t disagree and goes with him.

The “pharmacy” is a group of guys that love to see this particular dad come into the shop. He will buy anything they tell him, and they often prescribe placebo’s just to get the money out of them. The dad goes into the pharmacy and says, “My child has autism. What’s it made of, and how do we fix it?” The guys go through their usual made-up mumbo-jumbo and start prescribing more placebos for the kid, and the dad completely trusts them. He’s just about to place down his money when one guy decides to be responsible and actually looks up what Autism is, and tells the dad to go see a psychologist.

Finally, they go to see the psychologist, and they really learn what Autism is: a spectrum of disorders that show up in diverse ways, but yet tend to have in common social reclusion and slow verbal development. The psychologist then proceeds to tell them about the spectrum, and where on the spectrum their child is. The mother has a good cry, the dad nods, trying to take it all in, and the psychologist then gives them advice on which books to read, a special school they can go to, and a heavy bill because their insurance does not cover autism diagnosis.

But in real life, it doesn’t work like that.  There is no magic cure, and even the psychologists that diagnose the disorder do not have all the answers.  Autistic children are unique, each having similarities in behavior, and yet many have very different behavior traits that distinguish them from other children with Autism.  As much as we would like to have all the answers, we just don't.  And that's precisely why some snake-oil salesmen, I mean "doctors" are able to peddle their poisons to desperate parents and potentially kill or seriously injure children that most often cannot speak for themselves.  And these so-called Autism Advocates are able to get away with it, because they promise the "quick fix."

But just like other “serious” issues dealt in sitcoms, the reality of Autism isn’t something that can be “fixed” in a half-hour, or in an hour’s time.  Nor with a pill, or starving the child of vital nutrients, or any other nonsense these "professionals" have promised will "fix" our children.  Autism isn’t a sprint, like having a cold. It’s not a marathon, like raising a child to adulthood. No, Autism is a lifelong around the world trek on foot with bare feet. You feel every step, the warm steps on even concrete when things go well, the freezing steps on slick ice when your child has a meltdown in public and others around you assume you are a bad parent, and the bleeding steps on sharp rocks when you feel like no progress is being made as your child has a melt down in the middle of the night for no reason at all.

So I applaud shows that try to depict Autistics, and parents that have children with Autism. It’s good to help other parents know what we are going through, if only on a superficial level. But I don’t see how they can show the full experience in an hour and have people really understand what autism is all about. It’s just not possible. It’s not an hour’s Sprint. It’s not a week-long mini-series type marathon. No, it’s a life-changing trek of pioneering parents. They leave their blood and tears behind, sacrificing their all for their children. Sometimes this means losing loved ones to scorn, anger, or even having them give up on you. Sometimes it means sacrificing social events for the benefit of your child. But at least each step, each bloody, painful step, is a step forward. Our reward as parents? The eye contact. The hugs. The occasional, “I love you”. The giggle of a child that is happy and excited about learning something new, like going to the potty on their own. That is what I live for.

Autism and Alternative Therapies: The Dangers of Prescribing Without Evidence: Lawsuit in Chicago

The Chicago Tribune is running a story about two doctors who are being sued for prescribing a dangerous autism treatment: chelation.  The father claims that they based their prescription off of bad practices, and endangered his autistic son's life by forcing him to go through chelation treatments.  Both doctors have not responded to comment, as is expected for any pending litigation. 

Chelation, for those who are not familiar with the process, is a chemical treatment designed to force the body to excrete toxic metals through urine.  If not performed correctly, it can cause kidney failure, and death.  It is also a popular "treatment" for children with autism, as it's believed that heavy metals, like mercury, cause the condition.  This is based on research by Dr. Wakefield, who's research has been shown to be fraudulent.

At the heart of the lawsuit is the laboratory these doctors sent tests in for the boy, which use a questionable method to test for heavy metals in autistic children.  They give the children a chelation drug to force heavy metals out of the body through urine, and then compare the metal content with the metal content of a control without having taken the chelation drug.  This, of course, will show elevated trace amounts of heavy metals in the urine of the autistic child, which then justify a chelation regiment that is lucrative for the doctors and potentially deadly to the child.

The good news is the doctor's being made to answer for their conclusions.  There are so many snake-oil salesmen out there for autistic children, it's hard to know what is and is not a true treatment.  It's about time those who make drastic and life threatening decisions without taking into account the safety of the child be made to answer for those same decisions.  It is, after all, negligent, and should be criminal, to falsely propose "cures" without having the clinical evidence to back it up.  Of course, there is a lot of money in snake-oil, so I don't know if it will ever go away.  One can only hope.

As for the father conducting the lawsuit, you have my support, and my prayers are with you.

As for the doctors that performed this fraud:  Shame on you both.