Fears and Stresses of Autism

There have been an alarming number of murder-suicides being reported in the media, and they are centered around parents that have either killed their child, or killed their children and themselves because their child(ren) has autism.  It's heart-wrenching to hear about, devastating to all to know that someone would fear Autism so much, either from the results or responsibility that come with having an autistic child, that they would resort to taking a life (be it their childs, their own, or both). 

I'm not going to comment on the mindset of these parents, the psychology that would drive them to such extreme, final measures, because I don't know them.  All I know is what the media reports, and they tend to focus more on the sensationalist shock value than the actual facts behind it.  But needless to say, there is a fear, an unmitigated terror, of Autism. 

Why so much fear?  Because it's unknown, and unpredictable.  Parents do not know in what form Autism is going to take in their child.  For instance, when my son was growing up, he loved being indoors, and never once tried to walk outside.  I thought life was going to be easy with him, until he started going outside.  Now he roams the neighborhood if left unchecked, and has several likely haunts, making it difficult to find him.  It's frightening, because we live by a pretty busy street, and too many people speed down our little isolated neighborhood road.  This desire to roam about outside caught us completely by surprise. 

There is also a related guilt that comes with having a child who is autistic.  An autistic child tends to behave inappropriately, often in very public places.  Society tends to be less than understanding when such an event occurs, and judgment is immediately rendered on the poor parent who is trying their best to manage their autistic child in the middle of an autistic episode.

There is a lot of pressure on the family in general, as siblings see themselves as not getting as much attention as the autistic child, and extended family often questioning the parental methods of raising the autistic child.  This is probably the most damaging to the parents of the autistic child, as they are generally working with the best knowledge they have from sources that are close to the matter (behavioral psychologists, special education teachers, etc.).  The last thing they need is a member of the family suggesting they are not disciplining their child properly, or they are being too lenient with them. 

So what's the answer with all the pressure of having an autistic child?  Sit back, watch them, and get engaged with your child.  He or she is your child, and they often know what they need.  If they like one particular food, go for it!  If they like being hugged constantly, all the better!  If they need time outside, let them go, and keep the activity carefully managed. 

The key, at least in what we have found with our son (anecdotal evidence here, take with a grain of salt), is to just set boundaries, and keep him within those boundaries.  If other people don't agree with the boundaries, that's their problem.  They often have their own kids and their own issues, which they should attend to and not try to "fix" others.  In using this method, our son tends to be very well behaved, and often his meltdowns can be easily diffused with a little effort. 

I can't tell you that I have all the answers, because every autistic child is different.  They may be high functioning, like my son, may have Aspergers and can speak their concerns, or may have low-functioning autism and therefore have more severe issues.  But you as a parent have the benefit of one thing:  constant observation.  You know your child better than anyone else. 

The best advice I can offer is grow a thick skin when it comes to other people judging you and your autistic child.  There is no other way around it.  People with disabilities have been ridiculed for centuries, those who are different have been hated, feared, and burned at the stake for centuries.  That's a lot of social momentum to fight to learn "acceptance" without knowing someone personally. 

Perhaps one day Autism will no longer be feared, and people will stop acting as a qualified psychologist without having any of the facts.  Until that day it's up to us, as parents, to find a way to provide as safe an environment for our children as possible.

Autism Weekend Roundup

I've been on vacation this whole week, and had the kids with me for that time. As it's been just me, I haven't had a lot of time to work on posting. There are a lot of news to cover, and some treatments that have been little known or addressed. First the news Autistic children do tend to be picky eaters. Several have suggested it's because of G. I. that children with autism commonly have. Others suggest it has to do with textures issues and sensory overload. Whatever the issue, children with autism have their favorite foods and will stick with those foods, avoiding many new foods. The lack of a diverse diet has been a cause of concern for the nutritional health of the children. Well, recent news is that autistic children with a very limited diet do not suffer from malnutrition. A very comforting bit of news for those of us who watch our kids eat nothing but cottage cheese and watermelon (and some other things too). Treatment I've been reading about this treatment for a while, and just now have the time to post about it. It's called the Listening Program. It works off the research that identifies certain frequencies that then effect different areas of the brain. Essentially, a set of frequencies are played, and as children listen to them it stimulates growth in these neural areas. At first it sounds a bit far fetched, but keep in mind that we are talking about the nervous system, and auditory stimulation is a direct link to the brain. And, as I have posted in past articles, autism is an increase in either the density of number of neurons in the brain, so it is entirely possible, and has been proven in clinical studies, that auditory stimulation can retrain these errand neurons to stop randomly firing and improve overall sensory processing. The process is interesting, while also expensive. It requires high quality headphones, and either a high quality CD player or a special compressed audio format to keep the full range of frequencies available. If you opt to purchase them yourself, the CDs will run you at least $700.00 (if I remember right). If your insurance will cover the purchase, and you have a qualified technician to work with you, it may bring about a positive change in your child. I'll be keeping my eyes out for this, just to see which autistic children are the best candidates for this type of therapy.

Bias and Bias Control: Poisons in any Debate

Lately, with all the controversial material I have been reading (politics, law, autism, the World Cup, ice cream flavors..), I've started to think about bias.  Not so much about the bias of reporting, but more on the bias of those receiving the news.  It seems to be rampant, because there are so many methods of filtering out the news that was not there before. 

For instance, when a recent report about the Jobs market showing more jobs lost for the past month, but with an overall unemployment rate going down from 9.7% to 9.5%.  Politically, this was seen as a win for the Administration as they can point to the unemployment rate as a sign that their policies are working, while the opposition point to the increased job losses as a sign that the policies are not working. 

Now, set aside your own biases here, because I'm not defending or justifying either decision, but rather I want to point out that the numbers did not change for either group of observers, but rather they chose to interpret it differently.  The Administration wants to show some kind of progress in this very sensitive issue to justify their policies. The opposition want to see a win for their side in the next election, and therefore would benefit with the perception that the current Administration and ruling party are not doing what needs to be done.  There, they each show their bias in their interpretation of the numbers. 

But it doesn't stop there.  Because of our perceived need for "balanced" reporting, there are now news outlets, bloggers, and others that manage to broadcast their own biases out there, and in greater numbers than before.  Add in the fact that excellent tools like Google, Yahoo, Bing, and other news aggregate sites have the ability to filter from whom we get our news based on our own biases, we are able to keep to our own ideology and therefore reinforce our own biases with similar biases.  Hence we have conservatives that read, listen and watch the news from "conservative" news organizations and talk shows, while liberals do the same with liberal news organizations and talk shows. 

So, is there a problem with it?  Well, strictly speaking, as Socrates, Plato, and Aristotle would I'm sure submit, if you don't have alternative view points, you are unable to reach a reasoned decision.  Therefore decisions are made without being thought through, often without obvious flaws being discovered, and therefore huge problems can arise.  Frankly, we make mistakes enough without needing to invite them by not having a reasoned discussion with open minds. 

And then there is the problem of isolation.  While I lived in Germany, there was an awesome, sobering poster in the hall of the (if I remember right) Frankfurt-Hoechst government building.  It said "Germany for Germans, Hessen for Hesseners, Hoechst for Hoechsters, Me for Me" (rough translation).  The picture was, again if I remember right, one of increasing isolation and loneliness, and I got the impression that the poster was to illustrate how being an "isolationist" can ultimately be detrimental.

The idea is that as we start to isolate ourselves, we begin to see the "fox hole" we are in instead of the big picture.  In politics, we see only what our "party" sees.  In Autism, we see only what we want to see (vaccines vs. genetics).  In sports, we see only our team and no one else's team.  And because we isolate ourselves in this manner, we find it easy to dehumanize others.  Once someone is dehumanized, it's easy to disrespect them, which can further escalate to feeling indifferent or even violent against the opposition (which ever it is). 

So what can we do?  Try to see both sides of the issue.  Here the arguments on both sides, understand them, and then make decisions based on those arguments.  Sure, you will still be deciding with your own bias, but at least you have given the other side a chance to explain their positions, and calmly discuss the benefits and detriments that come with each position. 

Perhaps if this type of civil discourse were encouraged more in popular media, we will see it bleed into the general populace. 

Veterans

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.

Working Day To Day With Autism

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.

Making Sense of Autistic Spectrum Disorders: A Blog Review

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. 

OSR#1 Not A Dietary Supplement, Serious Side Affects Warns FDA

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". 

Technology, Interaction, and Autism: iPods and Beyond

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. 

The New Mac Mini: The Impression

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.

Why So Many Genes in Autism Research? Copy Number Variations

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. 

First Annual Train4Autism Neighborhood Yard Sale

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.

Autism Drug In the Works: KM-391 by Cellceutix in pre-Clinical Studies

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. 

Biological Diagnosis of Autism: A Urine Test

The UK's Daily Mail is reporting a potential new test for Autism that will show, biologically, whether a child has the condition.  Apparently, the urine of an autistic child is chemically different than neurotypical children, and therefore a simple urine test could possibly be used to diagnose the condition.  This is based on the gastrointestinal disorders that often accompany children with autism, which cause a different bacterial makeup within the child's digestive tract. 

This will work with some children that have gastrointestinal disorders that accompany their autism, though as a catch all for autism in general I don't see it as being very effective.  Still, it is yet another source of autism diagnosis that identifies the condition as a biological and not purely behavioral condition, pounding another hole in the argument that Autism is the result of poor parenting and therefore should not be covered as a diagnosis. 

Amano Chocolate and the "Guess The Origin" Contest

On a lighter note, I thought I would mention the Guess the Origin Contest over at Amano Artisan Chocolate, a Utah-based chocolate maker.  For those who love chocolate, and I don't mean the waxy stuff you get at your local Shop n' Rob, but real chocolate with actual flavor, this contest may just be for you.  They are currently working with a new chocolate, and they want you to guess from where the beans have come!  The winner will receive $830 worth of chocolate, or ten bars a month for a year. 

Here is the contest information from their website:

We are in the midst of releasing a brand new chocolate.

To celebrate, we are giving away a free one year supply of chocolate to one lucky individual who guesses the origin of the cocoa beans we used. How much is a "one year's supply"? The answer: 10 bars per month for a year. This is over $830 of chocolate!

To enter, simply fill out the entry form. When the bar is released, we will hold a drawing among all those who guessed correctly. If you win, you will be the envy of your friends, neighbors, and just about everyone else!

What do the beans taste like?

They have a beautiful rich chocolate flavor with some very nice fruity notes. We have made a number of test batches and the chocolate made from these cocao beans is wonderfully complex. The finished chocolate is unlike any of our current chocolates. We know you will enjoy it.

The cocoa beans arrived a little over a month ago. Since their arrival, we performed a number of test roasts to find that beautiful "sweet spot" where the cocoa bean's peak flavor is expressed. Once we found the perfect roast, we made the chocolate. We are very happy with the results.

As with all the chocolates we make, we start only from the highest quality and most flavorful cocoa beans available. We carefully roast them in our antique cocoa roaster, remove their shell, then slowly stone grind them in our antique German melanageur turning them into delicious chocolate.

This is one chocolate you are sure to love. I wish each of you personally, Good Luck!

Feel free to sign up, and give it a guess!  It's definitely worth the effort, and who knows, you may win!

Microglia Cells, The Immune System, and Behavior

The Journal Cell reported research done by Nobel Prize winning Mario Capecchi and his team here at the University of Utah regarding the pathological grooming of mice and their cure.  The research draws a direct connection to behavior in humans and the immune system, or more specifically with microglia cells that are generated in bone marrow to defend the nervous system.  It seems that in mice with a mutated Hoxb8 gene, the need to groom oneself to the point of hair removal can be cured by a bone marrow transplant to replace the microglia cells.  The mice, so treated, were cured permanently from their pathological need to groom themselves, resulting in normal behavior.  The news is staggering, because it ties mental health treatments to immune system treatments (similar to cancer patient treatments), rather than chemical treatments through drugs.

So why all the excitement?  Because it can open the doors to a number of new treatments that will be done once to cure a host of behavior disorders.  Obviously more research is needed, but it is possible that Autism could be cured with a bone marrow transplant, or at least the behavioral aspects of Autism could be cured, without the threat of altering the mind of the autistic person. 

The really exciting thing about this research, if it can be linked to Autism and develop a treatment for it, is that yet another reason for insurance companies not to recognize autism as a diagnosis has been removed.  It also will, potentially, make treatment for Autism less expensive if the behavior can be "cured" through bone marrow transplants or some other one-step procedure as opposed to years of expensive therapy. 

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.