This morning I had a unique experience.  On the way to work I got to talk with a disabled veteran who was on his way to the University Hospital.  He was a great guy, and had a lot to say.  Growing up in a family that has seen service in one form or another, I’ve learned that all veterans have something interesting to say.

We talked about his service.  He was in the Army, serving in Desert Storm when the US first invaded Iraq under President George H. W. Bush (senior).  He was stationed in Germany as a Medic dealing with type II trauma, usually burns.  He started to choke up as he spoke about those young men who never made it, because he thought about how they were someone’s son or daughter.  He also spoke of his initial reaction when hearing, shortly after, that his own son was signing up for the Marines. 

We talked politics, policies, history, and a number of other topics, but I will never forget the concern he had for those young men under his care.  It’s always a pleasure to speak with a veteran about their experiences when they can, and I hope it wasn’t too painful for him. 

The month of July is very special for a lot of reasons.  We celebrate the day the Declaration of Independence was first signed (the last signature was made on August 3rd), and in Utah we celebrate the day the Mormon Pioneers came into the Salt Lake Valley on the 24th.  But it should be more than that.  We should take a step back and think about what makes out Country unique.  And be thankful to all those who have made it possible, through their sacrifice and their vision. 

So for all those veterans out there, I want you to know that your sacrifice from your jobs, family, health, and those who sacrificed their lives, are very much appreciated.  I am grateful for your dedication for this country, and your desire to serve.  Thank you.

Normally I have posts about research, tools, or games for Autism, but today I thought I would talk about what it’s like to be a parent with an Autistic child.  There are probably many parents out there with the same story, and I’m sure many of you parents of neurotypical children can relate to a certain extent. 

Why?  Because first and foremost an autistic child is a child.  And like all other children, your autistic child will have wants, needs, discipline, rewards, and so on.  The only difference is with some autistic children they can’t speak, or they can’t sit still, or continue to do harm to themselves. And they often take longer to learn from verbal commands than neurotypical children. 

But, even between autistic families, autism can be very, very different in its symptoms and manifestations.  Let me share a couple of my experiences with my son. 

My son loves the outdoors for a number of reasons.  One, he likes to turn water on and off, and play in water.  This isn’t so bad in the summer time, unless there is talk of water restrictions.  The problem is, you can’t just tell him to stop, because he doesn’t listen.  He is too focused.  I can yell until I’m blue in the face, but it doesn’t do any good.  So, we turn the water off for him, and usually take him inside. 

Another thing about the outdoors he likes is being able to play in the dirt.  He loves the feel of sand and soil, either dry or muddy (lately it’s been muddy).  He also likes the feel of it in his mouth, so he consistently will eat sand, dirt, and place rocks in his mouth.  This brings up all sorts of potential problems, as eating dirt is a good way to introduce e. coli into the system.  Therefore we are constantly on guard with this habit.

Another outdoors thing he likes to do is run across the street to the neighbors back yard, whether anyone is there or not.  He does not look for oncoming cars, and lately there have been quite a few teenagers and 20-somethings come speeding down that street.  It’s not open to anything but our little neighborhood, but eventually will be open to a new development to the East of us.  This has me scared.  It also has me scared that he will just walk into someone else’s yard without asking.  We are working on that currently, and it’s helpful to know that our neighbors are aware of the situation and are tolerant.

So that’s the Outdoors.  In order to deal with these issues, we have taken to adding chains to the doors (which only hamper him for a few minutes until he gets a chair), and we have the back yard fenced in with a fence soon coming for the front yard.  It doesn’t have to be a big fence, just big enough to deter him (about 4 feet tall should be fine).  These have worked in keeping him in the back yard to date. 

For the water, we remove the valve handles, so he cannot turn them on or off.  This also lowers the amount of mud in the back yard (except in the garden, where he has a path through the corn already).  But we also limit the amount of time outside, so there is less of a chance of him getting a large, active colony of e. coli into his stomach. 

Another issue is his learning.  This is something that even my own family has taken a criticizing view of, as they feel we are not working enough with our son.  The thing is, we spend many hours working with him either directly or supervising his use of a number of learning programs on the computer or on his iPod.  His time is spent learning to spell, learn letters and numbers, and learning to count items (not just read numbers).  He is exceptionally bright, and often is self motivating in a number of these areas.

For personal time, he will often bring a book and will "teach" me the letters he sees.  He will point at the letter using my finger, and then have me read it.  What’s really cool is I can’t trip him up by saying the wrong letter.  That’s what really has me excited.  That, and I have already started to teach him to count in German, and he knows the difference based on whether I say "one" or "eins".  He then proceeds to say the numbers in either English or German in his slurred manner (he can do vowel sounds really well, though his consonants are not too defined). 

For his own work, he will pull the iPod out and go through various apps we have downloaded (either free or paid), and play with them.  Some are games, some are stories, some are just matching tools.  All of them are learning tools, which has helped him learn to spell, read, and identify colors.  The only thing that concerns me is often he will switch the languages on these apps to Chinese, which I don’t know. 

My son also does a lot of playing, and loves to wrestle.  He has actually developed some great social skills this way, and loves to tickle.  We found that out when he tried to tickle a little girl while we were waiting at a restaurant.  That was quite the embarrassing experience, though her parents thought it was cute.  He also will head-butt or dig his chin into someone when he gets too excited.  This is a problem, and one we are working slowly to correct.

Since he stopped school in the fall, he seems to be regressing in a number of areas.  I imagine a lot of parents see this in their children, though I don’t really know how that works with neurotypical children myself.  He does tend to be less vocal during the summer, and more likely to have accidents.  Though, unlike before, if we ask him if he needs to use the toilet, he will then go and do it.  That’s an improvement, and something we are proud of.

So, I hope this little snapshot of our life with our son helps outline the scares and cares that come with an autistic child.  He is very loving, smiles all the time, and has a great sense of humor, he just doesn’t talk.  His actions and moods swing from a 2-yr old to a 15-yr old in an instant, though he is generally in a good, happy mood.  For that, we are grateful.  We love him to bits, and I look forward to seeing his improvement as we continue to work with him.

This morning, as read through the daily news, I came across a blog on the Psychology Today website:  Making Sense of Autistic Spectrum Disorders by Dr. James Coplan, MD.  He is a pediatrician with a specialty in developmental disabilities.  He doesn’t have any ties to vaccine companies, doesn’t have a treatment he’s pushing, he just studies and educates parents that visit him on the developmental disabilities their children are experiencing.

I’m often wary when I read autism blogs.  Many are written by people trying to push a specific agenda, such as gluten-free diets, poisoning children with industrial chelation drugs, and other such quackery.  But with this particular blog, both written by an expert in the field and backed up by actual research spanning 40 years, I found something that could be trusted.

His first post (and I highly recommend reading them in order) explains his background and the importance of consulting a professional.  Please don’t take any blog entry as medical advice (and that goes for my blog as well), since only a physician can properly diagnose and treat any sickness or disorder.

The second post explains Autism.  This was brilliant, and sold me on the blog completely.  Here Dr. Coplan explains autism, not as a linear list of symptoms, but interrelated symptoms and levels of IQ.  Both are responsible for autism symptoms, and the ability to work past the symptoms.  The second post explained the relationship between atypicality and intelligence, and how diagnoses are assigned based on the spread on the graph. 

In subsequent posts Dr. Coplan explains the relationship of time in the diagnosis, and why there really isn’t an Autism epidemic.  That one I was a little concerned about, until he explained the ever widening diagnosis of Autism, the increased number of disorders that are being added to the Autism Spectrum, and finally the lack of any real tracking ability from the past beyond the search for services. 

This blog is an absolute must read for anyone with a family member with Autism, or for those who interact with children or adults with Autism.  It is now one of my favorite blogs, and has been added to my Google reader. 

The Chicago Tribune is running a follow up story on the status of OSR#1, a drug that was peddled as a "cure" for Autism and a dietary supplement.  It seems the FDA has looked into the "supplement", and found that it contains no dietary benefits, and instead is a powerful chelator, binding to heavy metals to remove from the system.  That, in and of itself is dangerous, if chelation is not necessary, as the body requires heavy metals to survive. 

When the Tribune investigated this drug last year, they specifically asked the company developing this substance, CTI Science Inc., for the research they claimed had proven the safety and efficacy of the product.  The company stopped returning phone calls at that point. 

But now the FDA has had a look at the research (on lab rats), and found that there were some side effects recorded:  soiling of the anogenital area, alopecia (hair loss) on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas" and a rapid increase in normal cells contained in the lymph nodes. 

Ellen Silbergeld of Johns Hopkins University has warned against the substance, and Pharmacologist Dr. Arthur Grollman identified the substance as a powerful chelator that can be toxic if only normal amounts of heavy metals are found in the body.

The FDA has denied the labeling of this substance as a "dietary supplement" because it does not bear or contain a dietary ingredient.  Therefore it is, in fact, a new drug, which requires proof of safety and efficacy through clinical trials.  This process is very lengthy and expensive, as noted by Richard Mailman of Penn State University, and is that way for a reason.  It needs to be proven safe, and reputable drug companies take the time and pains to make sure that is the case.  It seems that CTI Science Inc. has failed to meet these standards.

I’m not going to judge the efficacy of OSR#1, but without any proven safety research and the long list of possible side effects, I would say that it would be irresponsible for any parent to give such a substance to their children. 

And to Mr. Boyd Haley, the creator of this snake oil, I say "Shame on you". 

Businessweek has posted an article on the fight against Autism going High Tech, meaning that technology is becoming the avenue autistic people are using to overcome their social isolation brought on by the disorder.  Mentioned there are a number of different devices that are becoming more mainstream:  iPods and apps for Autism (229 and counting), robots instead of people for reliable, comfortable communication, and other tools each provide an autistic child with an opportunity to work through their disability and interact with others. 

I’ve posted several reviews on apps on the iPod/iPad that help autistic children learn, and each my son has enjoyed.  I still maintain that Apple’s true potential in their popular multitouch platform has yet to be tapped or even advertised, and that is it’s ability to enable those who are disabled.  But this is more than finding a technological solution to a problem, it’s about finding how autistic children interact, and catering to that method.

For instance, aside from robots that have preset interaction ideas, dogs can provide a save interaction variable for autistic children.  That’s because dogs are perhaps more straightforward in their responses, and remain very honest and predictable in how they will interact with children.  That is, in general at least.  There are some exceptions to that rule, but by and large dogs provide a predictable interaction experience for autistic children. 

But what about vacations?  Many parents with autistic children tend to shy away from vacations in general, and particularly large resorts with lots of people.  I’ve had several parents post comments about how they would love to have their children go to Disneyland or Walt Disney World, but fear the reaction with so many people in such a close space. 

Remember that Disney has a policy:  Every guest is to have a good experience.  As such they have a special pass for those who are unable to wait in long lines for extended periods of time.  Those parents with an autistic child can get one of these passes for up to 5 people plus the special needs individual (if I remember right, it may just be 5 people).  This pass was a life saver for my family, as my son was able to ride his now favorite ride (other than the Carousel), Finding Nemo, without having to wait the full 40+ minutes to get in. 

Disney also has another interaction activity mentioned by the Businessweek article:  "Turtle Talk with Crush".  Apparently this activity, where children get to talk with Crush the Turtle from Finding Nemo has been very well received by children with lower functioning autism, and they even come away repeating more of the words that Crush has said.  My family didn’t get a chance to see this activity (it’s in Disneyland’s California Adventures park), but you can guarantee that we will be there the next time we go to Disneyland. 

There is a lot happening with Autism in this day and age.  More people are becoming aware of the disorder, more parents are getting timely information on how to manage the disorder, genetic markers and causes are being discovered, potential treatments are being investigated, acceptance is becoming more common, and technology is quickly enabling those with Autism to interact with those who are not more readily.  It’s an exciting time for parents of children with this now very wide spread disability. 

Today Apple announced their new Mac Mini design, in the midst of the iPhone 4 pre-order issues, with an aluminum body and a squat look, much like the Apple TV.  It looks so much like the Apple TV that it more or less points out the direction I think they want the Mac Mini to go:  Media Center. 

Why do I think it’s destined to the media center designation?  Well, it could be because of the HDMI port on the back.  That, and I’ve been thinking of using the Mac Mini as a content center for a while.  With Bluetooth keyboards and mice, the jump isn’t that difficult.  That, and any Apple Remote will work without a problem. 

Currently I use an Apple TV for our main Media Center, with my 20" iMac in the office for casual viewing.  But I was thinking now nice it would be to have a Mac Mini (or Mac Mini Server) as the main Media Center, with satellite media centers, like that Apple TV, for other TV’s in the house. 

It would also make a good gaming system, with the beefed up graphics and everything that comes with it.  I’ve been looking for a solution that would unify all media into one device.  With media devices like the Mac Mini, I can see a good future.

So for those of you out there that don’t think they would get an Apple device, what solutions do you have?  Any Linux boxes out there with Mythtv installed?  Windows Media Centers?  Let me know what works for you, and why.

Genetic Autism Research has been plagued by confusing results:  to date there are over 22 genes whose variations have been linked to Autism, and it seems to keep growing.  And the additional problem of different variations within the genome has been problematic when trying to identify direct causation.  So much so that many in the Autism community (mostly those who remain staunch supporters of the vaccine cause) have pointed to these variations and confusing results as proof that autism is not genetic. 

So why are there so many different genomes that are linked to Autism?  Well, as Businessweek is reporting, and as located in the June 10th issue of Nature, it seems to be linked not to genes directly, but to the results of copying DNA, known as copy number variations.  It seems that as the genes are copied, either there are too many copies of the gene, or too few copies of the gene when compared to the control group of neurotypical people.  This means that the DNA duplicating system is creating new sets of genes that are "mutated", in that their sequences are either duplicated or overly short. 

The interesting thing about this research is that the results of the copy number variations can be inherited from parents, or new variations can be created that are independent of the parental genetic contribution.  The results therefore can be compounded and become more prolific, either by inheritance or through individual mutation. 

It’s possible to manage the effects with medication, though current research sees medical solutions to be further off than within the next couple weeks (or years).  But the research itself is pretty stunning, providing hope that Autism can finally become understood as a genetic trait that happens through a natural, genetic process, instead of some government or industrial conspiracy. 

The Utah Autism Coalition has announced the Train4Autism’s first annual Neighborhood Yard Sale on Saturday, June 26th from 8 AM to Noon at Mountain Oaks Circle, Cottonwood Heights (8080 South 3715 East).  15% of the proceeds will go to Train4Autism, while 85% of the proceeds will go to the Utah Autism Coalition’s fund to provide treatment, mentoring, and support programs for children with Autism. 

For those interested in volunteering or providing donations, you can call 801-618-6097 and arrange the details.  This is just for those within the Salt Lake Area (since that is where the sale will be).  The last day for pick-ups will be June 24th, or you can drop off your donations to the drop off center.  Call the above number for more details. 

This marks a new chapter in the Utah Autism Coalition’s history, as it is now working to provide support for families with Autism in a more direct way.  With the help of sales like these and grants, they are working hard to provide for those with Autism in the community.  The sale is your chance to get involved and show your support. 

For more information about the Utah Autism Coalition, check out their website.

Marketwire posted an update from Cellceutix on their new autism drug’s accelerated release schedule, and it’s move to the pre-clinical trial stage.  The new drug is a completely new compound, dubbed KM-391 (for now, at least).  The drug affects brain plasticity, serotonin levels, and behavioral function, which were parameters that were chosen specifically for autism.  The results of the pre-clinical tests should be available within a couple of weeks, as opposed to a couple of months, which is good news for those wondering how effective it will be, and whether or not it will be the new "wonder drug" being hoped for in the need to treat autism. 

This drug, from what I can read (I have yet to see the details from the pre-clinical trials, or any further clinical trials), is a method of managing the symptoms of autism, much like drugs are used to manage ADHD.  It is not a cure, in that it doesn’t change the fundamental genetic structure of the person with Autism (which would be required to rid the body of Autism completely, as it is genetic).  Therefore, any hopes that this will be the silver bullet for Autism, or will fundamentally change the way someone with Autism thinks should be kept on hold.  We have yet to see the results of the drug trials, which I will be very skeptical about until proven otherwise.  Not because I don’t think it will work, but rather I want to know what side effects are present as this will be changing the chemical makeup of the brain. 

Needless to say, the Autism community has been interested in this drug for quite some time, and it’s possible that it could bring a lot of children into a managed level of behaviors, allowing them to share the world they are in with others.  We shall see.