December 2012 Archives

December 22, 2012

Autism as Excuse: The Social Fallout of Newtown Shooting

Article first published as Autism as Excuse: The Social Fallout of Newtown Shooting on Technorati.

Child with autism hiding beneath his full-sized Mickey Mouse stuffed animalThe tragedy of December 14th, the murder of 20 children and 6 adults, has spurred a lot of feelings. I was devastated, worried about my own children, and concern for the families and children in Newtown, Connecticut. And then, based on hear-say, major media outlets have latched onto the possibility of the shooter having Aspergers, a form of autism. And while the White House and members of Congress prepare drafts of legislation to limit gun sales, this sigma of "autism kills" is slowly starting to take hold as reported by CNN. And that scares me, scares me more than you can know.

You see, autism is a very mysterious disorder. No one really knows a whole lot about it, other than those with autism tend to be "weird". They stand out socially, are often targets for bullies, and live with a lot of anxiety. Because they are so different and unable to defend themselves, they become easy targets, and not just by bullies. I see fights against gun control trying to redirect the stigma of unhinged murderers toward the alleged autism of the shooter, even though there are no confirmed reports (as of this writing) that the shooter intact had autism.

Of course, as experts have constantly cited, autism is not a psychosis, meaning autism does not "cause" violent behavior, psychotic episodes, and therefore will not cause someone to become homicidal. The evidence presented by parents, therapists, psychologists, neurologists, and psychiatrists all state that those with autism are more likely to hurt themselves than anyone else.

But, as the original article from CNN stated, children (and most likely parents) are already looking to blame autism for the shooter's actions. Once adults start to believe it, as with various unsubstantiated claims to the cause of autism, politicians will begin to believe it for those votes. Once politicians start to believe things, true or not, it becomes ingrained in law.

I don't know what political fallout will come of this horrific tragedy. Most likely there will be some restrictions for firearms and ammunition. That's a good start. But behind the scenes, more kids with autism will be bullied. More kids with autism will be denied schooling services, healthcare services, and support services. All because of an assumption made based on unsubstantiated claims.

And that, more than the inability to purchase a semi-automatic assault weapon with the ability to shoot over 200 rounds in a single clip, is what scares me.

December 21, 2012

The Archeology of Care: Disabilities in Pre-History

The New York Times is reporting the results of a dig near Hanoi that indicates a culture of care in a 4,000 year old prehistoric society. The man, called Burial 9, is the only person buried in a fetal position, with all others being laid out straight. Upon investigation into the bones of the corpse, it was discovered that the young man had become paralyzed before adolescence due to Klippel-Feil syndrome. The result was a need of direct care, as he could not feed himself.

The article continues on to outline additional archeological evidence of caring for those who were disabled either congenitally or as a result of injuries. The archeology of care outlines a debilitating illness or disability, the impact that disability would have in their society, the level of required care in the given society, and then using all these clues to get a more complete social picture of the community.

What's interesting is the level of care given to those with disabilities, at least those documented, in archeology. Often the children, many of whom lived well into their teens with their disability or illness, were well-cared for through their lives. They possessed the care necessary to survive, and the will to survive, both of which showed that they were tolerated within their family or social groups.

It's interesting, when looking back from the point of view of a parent with children who are disabled, to see how the past had treated their own. It's not conclusively proven of course, but it's easy to imagine these smaller communities being large family groups, or being closely tied through family connections. It would explain the willingness to sacrifice their optimum survival in order to accommodate someone who had been born with or had through injury developed a disability.

So how do they know about disabilities? It's all in reading the bones. This, of course, means they were focusing on physical disabilities, or illnesses that can leave bone traces. Those with physical deformities are one thing, but those who contract an illness like polio only show their illness through lack of buildup around muscle to bone connection points. Weakness there, and decreased bone size indicate little to no activity.

December 20, 2012

It's the End of the World as we Know It, and I Feel Fine

For those of you who haven't yet heard, certain "experts" have been interpreting a dead language of the Mayans, looking at their calendar, and determined that the end of the world will be December 21st, 2012.  From this prediction, several world-wide disaster movies have been created, playing off this idea.  And as a natural extension, there are actually people that believe that the end of the world is coming tomorrow.  

So my question is, will sick leave cover the world ending?  Because I'm definitely not coming in to work if the world is burning up in flames.  When I was in High School in the late part of the last century, the world was supposed to end.  I asked my teachers if I had to do my homework, seen as how the world was going to end and all.  They wouldn't let me off, for some reason.  I guess it was because the world didn't end.  Since then several other predictions of the world ending has come and gone, all of which has really got me worried about how much sick leave I have accrued. 

But seriously, it's a good idea to prepare for some kind of disaster.  based on USGS surveys, somewhere in the world there will be at least one earthquake, there will be horrible winter storms, and someone partying their last day on Earth just might get drunk and down a power line.  All of these can mean that you will need to be prepared. 

I'm not talking prepared in the sense that there will be mutant zombies knocking at your door, but it's a good idea to have some food stored away, extra water, blankets for heat, and some sources of light and entertainment.  My family likes to have board games on hand.  We also have oil lamps (which look really cool even without an emergency), and a decent amount of food storage for a couple of weeks if necessary.  

At any rate, if it is the end of the world as we know it tomorrow, then there is no point in worrying.  We can't do anything about it, so why try?  Instead, it's a great time to love your family just that little more, get as many hugs as you can, and enjoy that last piece of cheescake.

December 17, 2012

How the Grinch Stole Christmas: a Review

Article first published as How the Grinch Stole Christmas: Review on Technorati.

The Grinch looking over the building of the Old Globe Theater at Balboa Park.Today we experienced a beloved tradition in San Diego, the performance at the Old Globe Theater of How the Grinch Stole Christmas. This year is their 15th anniversary of the performance, and this afternoon was a special performance. It was the autism friendly matinee performance.

Going into the play, I was a little concerned about the performance. I've seen the holiday special which is 30 minutes (or 23 minutes), and I've seen the movie (which I did not like). I was concerned it would be too much like the movie. But, as it was live theater, I really wanted to like it. And I didn't. I loved it.

The Old Globe theater is small, and very cozy. It's smaller than my high school stage, making it a more intimate experience with the performance. Different in this production compared to their normal productions would be the lower sound volume and house lights up slightly. Also, there were more seats available for people to move about during the performance if necessary, separated sensory areas for those who need it, and free toys for the kids.

When we walked into the theater, the certain was decorated as the inside jacket of the hardcover book. The kids settled in fairly well, though our youngest was a little squirmy. It was exciting for our oldest to hear the orchestra tune up, as I pointed out the clarinet, he giggled. Before the performance, the San Diego Autism Society presented the Old Globe a plaque to thank them for their dedication and contribution to the autism community.

Then it started. The Old Max came onto the stage, and opened the performance. Then the Who's came on, singing about how much they loved Christmas. We then meet Young Max, and finally the Grinch. Our eldest loved him. He did an amazing performance, both he and Max. The whole cast was fabulous, making the performance amazing!

The story, at least to my mind, was the basis for the Movie, and not the other way around. And the musical was much better (in my opinion). I did miss some of the performance because my youngest couldn't sit still for a full hour and a half (though he did make it through a full hour). During those breaks the volunteer staff was very helpful, and we even got to meet Max while he was "back stage" (in the lobby between showings). It was amazing.

Near the end of the performance I had my oldest son on my back, standing against the wall, clapping while he watched the rest of the performance from behind my left ear. At the end of the performance, as we left, they gave each of our boys their own hardcopy of How the Grinch Stole Christmas. And, as we walked out to the parking lot, the bell tower at Balboa Park started to play, "Welcome Christmas (Fah Who Doraze)".

It's now three hours since the performance, and I'm still taken by it. It was fantastic, and something the actors at the Old Globe should be proud.

December 15, 2012

Autism and Trauma: Helping a Child With Autism Understand the Shooting in Connecticut

Article first published as Autism and Trauma: Helping a Child With Autism Understand the Shooting in Connecticut on Technorati.

Boy with autism alone in front of the Turtle Reef aquarium at Seaworld San Diego.The President of the United States did perhaps the most difficult task of any presidency today, and provided remarks regarding the murder of 18 children at an elementary school in Newtown, Connecticut. The President was perhaps the most presidential in his remarks, the most human in his grief, that I have ever seen. His comments were right, in that every parent is, or should be, devastated by the traumatic events today.

My wife texted me a message to let me know she was grateful that we no longer watch the news with the kids regularly. Today, it would have been devastating to them, seeing children their own age in distress. While I become enraged and tearful about it, our children, both of whom have autism, would regress at the display of so much trauma.

Children with autism feel grief, pain, loss, and fear just like all other children. And even just by watching traumatic news or events in movies, they can react. Even worse are those children who experience such trauma. And given the statistical likelihood, there were at least a couple children with autism at that elementary school.

As a parent, I want to protect my children from all harm, real or imagined. But when something traumatic does happen in their lives, it's an opportunity to help them deal with their grief and loss, just as you would any other child.

Gray Miller has a post on Love to Know Autism that talks about it called Being Autistic and Dealing with Death. The article is brilliant, talking about ways to help your child understand what the loss means, and looking for signs of grief that may or may not be apparent.

Unfortunately tragedy cannot be avoided, and happens too often in the world in which we live. But we can do our best to help our children with autism understand what has happened, what it means, and how to deal with their emotions in a constructive way. Just as with anything else in their lives, it will take a strong support system to help them work through it.

The tragedy in Connecticut is truly heartbreaking. My prayers are out there for all the students and parents, teachers, family, and friends of those who were lost. And I have a special little prayer for those who have autism as they try to heal from this horrible, terrible act.

December 13, 2012

Autism-Friendly Performances: The Grinch at the Old Globe

Article first published as Autism-Friendly Performances: The Grinch at the Old Globe on Technorati.

The Grinch peaking over the theater at the Old Globe in Balboa Park, San Diego.San Diego has a yearly Yule Tide tradition at Balboa Park's Old Globe theater: How the Grinch Stole Christmas. It's often sold out months in advance, and many families enjoy this regular holiday treat. But due to the nature of live productions, families who have children on the spectrum often give it a miss. It's often loud, dark, and people are expected to sit still and quietly during the performance.

So this year, The Old Globe has an autism-friendly performance on Saturday, Dec. 15th. Tickets are almost completely gone, so if you would like to get in, now is the time.

Monday the 10th the Old Globe had a "meet your seat" event for families, so they can see the theater, have their children see their seats, get acclimated to the environment, and know where they can go should they need to leave. Of course, we attended, and it was great.

We were met by the director of education at the Old Globe, who walked us through the whole theater. The outside looks much like the old globe theater it was loosely patterned after, but inside it was very much a modern theater. We got to see how the stage would look with props, colors for the seats, and had the changes in the performance explained to us.

We then went upstairs to see where a quiet corner will be set up for those who need to recover from overstimulation, and downstairs to the rest rooms. We were even fortunate to see a dressing room wide open under the stage, with some of the costumes from the Shakespeare performances for which the Old Globe is famous. It was a real treat, a neat experience, and made me excited to go to the theater again.

This sort of thing has started to become more and more popular over the years since Disney put on an autism-friendly version of the Lion King on Broadway. More theaters are opening their productions to children and families with autism. Speaking as a former amateur actor, the ability to adjust and adapt a performance for children with autism can be taxing. But the rewards of such a performance can help one grow as a performer.

At any rate, I'm looking forward to the performance on the 15th. It's going to be exciting for us, and I think the kids will love it as well.

December 12, 2012

Promising Drug Study for Autism

Article first published as Promising Drug Study for Autism on Technorati.

Child with autism helping to decorate the Christmas tree.US News and World Report has an article on a recent study done with a common water pill used to control high blood pressure. It seems that this drug, bumetanide, can regulate gamma-aminobutyric acid (GABA) in the brain, which is a neurotransmitter. It was postulated that regulating this neurotransmitter could help children with autism regulate their brain activity and ease some of their common symptoms.

The double-blind study which is available online in the journal Translational Psychiatry, found that those children with autism given the drug saw an improvement in their behavior by the end of the 90 day trial compared to the control group given a placebo.

Now, the researchers were quick to say bumetanide is not a cure for autism, just a treatment, and there is much more research in store before it can be recommended as a regimen for children with autism. But, because the drug already has FDA approval, research, studies, and results can be concluded quickly with a goal to have it available for those with autism within a few years.

Why so long? Well, children who take the regimen daily have to remain on the pill indefinitely, as their behavior quickly regresses once off the pill. Also, there is no known long-term effect study, and as such no known side effects. One child on the study ended with low potassium levels, which could be a potential problem with the drug.

Still, it's promising research that focuses on a potential treatment, and that's great! I love seeing research in this direction, because it's not about curing autism, it's about helping those who need it manage it better.

December 5, 2012

Glutamate, the Brain, and Autism: Revisited

Article first published as Glutamate, the Brain, and Autism: Revisited on Technorati.

Child with autism self portrait, playing with his iPod Touch.Recently, in a search for another article entirely, I came across an article in the journal Autism Research that found increased glutamate and glutamine levels in children with autism compared to neurotypical children, or even their parents. The article explored possible inheritable glutamate levels, but found none (at least, based on the abstract). I have been unable to access the article directly, so if anyone out there has the full article, I would love to read it!

Anytime I read an article about glutamate, I'm reminded of an exchange I had with several members of the "MSG causes autism" camp. I had been unable to find any research that made that link, but remained open to any research that would make a direct link to autism and the ingestion of increased levels of glutamate.

Thinking this may be the case, I started some reading on neurobiology with relation to glutamate and glutamine, as well as nutritional biology when it comes to ingestion of glutamate.

Now, full disclosure, I am not a biologist, neurobiologist, biochemist, or nutritionist. If anyone out there can better enlighten me on the processes of glutamate through textbook or research article references, that would be great! But please, no articles from "health food" websites or Wikipedia. It's not that I don't trust their intentions, but rather their reference, or lack of, to scientific research.

So, glutamate. Glutamate is a neurotransporter, meaning it activates neurons, nerves, etc. and gets them running. Signals between neurons require glutamate in order to get from one place to another. According to the Centre for Molecular Biology and Neuroscience, glutamate mediates a lot of information. It also regulates brain development and information that determines cellular survival, differentiation, and elimination as well as elimination and formation of nerve contacts (your synapses). You have to have the right amount in your brain in the right place at the right time. Too much or too little glutamate in the brain can be toxic.

Glutamate therefore needs to be in the brain. But how is it stored? It's kept within the brain cells, meaning there is very little free-floating glutamate within the brain, up to 99.99%, in order to have the whole system work. That's because the glutamate receptors are only activated outside the cells, so keeping the glutamate within the cells keeps the system in balance.

So, in order for this to work, the brain needs to have a way to keep glutamate out of the brain fluid and in brain cells. The only way to do that is through the uptake of glutamate, which is a special set of molecular proteins that bind to glutamate and and transfer them to cells. Glutamate is then converted into glutamine, which can then be transferred within the brain fluid without activating the glutamate receptors. It's then turned back into glutamate when needed. There is a lot more to it, and I recommend reading the article from the Centre for Molecular Biology and Neuroscience.

So, we know that glutamate in the brain is necessary, and highly regulated within the neurobiological system. But what happens when you eat a lot of food with Monosodium Glutamate, or other glutamate-producing foods? This same question was the basis of a research survey by various doctors in Germany, the US, and the UK, and the results were published in the European Journal of Clinical Nutrition.

The article found several things of which I was not aware:

  1. Glutamate is found in natural and artificial sources, and the average European ingests an average of 0.3 to 0.5 grams per day. The average Asian, where MSG is used more liberally than other locations, ingests an average of 1.2 to 1.7 grams per day.
  2. Most of the glutamate, up to 95%, is converted into energy directly by the enterocytes of the intestinal mucosa (the predominant cells within the innermost wall of your intestines).
  3. Both natural protein-bound glutamates (those found in fermented foods like cheese or in foods like tomatoes) and salt-bound glutamates (like MSG) are metabolized the same.
  4. The whole reason why MSG is used, the Umami receptors in humans, can also detect and use other amino acids, so MSG isn't necessary for the same flavor enhancement.
  5. Based on animal studies, a "safe" level of glutamate within the average diet can be up to 500 to 1000 milligrams per kilogram of body weight. So an average person weighing 150 pounds can "safely" ingest about 68 grams per day.
  6. There is little research on the effects of increased glutamate inducing asthma attacks, or sensitivity. Some research has supported it, others found little correlation, but the consensus is that it could exist as a potential issue.
  7. The only threat to the nervous system in general, including the brain, is if the blood-brain barrier is damaged. This is a barrier that is developed within the typically developing child by age 6 months. Only illnesses that damage the barrier, such as rubella, can significantly increase the chance of blood-born glutamate getting into the delicate glutamate balance in the brain. Even with development in the womb, the placenta converts maternal blood-born glutamate, and even fetal blood-born glutamate, into energy.

So consumed glutamate is generally converted into energy for the body, which, depending on your activity level, can be helpful or harmful to your muscle structure. It explains, at least to me, why so many people feel their pulse racing after eating a lot of MSG - think of all the energy pumping through your body! And think of all that energy getting deposited somewhere, perhaps your hips, stomach, waist, etc, if not used. So those that say that MSG is bad for your health, it definitely looks that way.

But what does that have to do with increased glutamate and glutamine deposits in the brain of persons with autism? Apparently, absolutely nothing. Consumed glutamate doesn't seem to have a direct affect on brain glutamate concentrations based on existing research (with the exception of those with damaged blood brain barriers). Instead, it's a natural occurrence within the brain.

So the question is, how does that happen? So far, I haven't been able to find any answers. All we know, at least from this research, is that it is not inherited, or at least not as a known condition outside of autism itself. Now, those with autism do generally have larger or thicker brains, which may contribute to the increased levels found in the research study, but without definite concrete evidence, we don't know.

So if anyone out there can help me with the research, that would be great! Please post your links in the comments.

December 3, 2012

New Autism Definitions: What's in a Name?

Article first published as New Autism Definitions: What's in a Name? on Technorati.

Two boys with autism at the penguin exhibit at Sea World, both very different with the same diagnosis.Recently the American Psychiatric Association voted to redefine many of the definitions of various mental disorders in the Diagnostic and Statistical Manual of Mental Disorders. Among many of the controversial changes, Asperger's Syndrome has been removed as a diagnosis, and added to the over-reaching autism label. There has been a heated debate as to the over-reaching implications of this decision, including the possibility that many who qualified for services no longer qualify.

The decision was not an easy one, being the result of 7 years of discussion, research, and debate. And, as part of the scientific process, the committee that developed these definitions will monitor their impact. This is the fifth release of the Diagnostic and Statistical Manual (DSM), and in each release definitions have changed.

Now, this brings up some interesting discussions, none the least focus on the need for an actual label for a child who has autism. This might sound a little heretical, I have often wondered what good a separate label within the autism spectrum does for children or professionals. Isn't autism descriptive enough?

I say this with the following understanding:

  1. Autism spectrum disorders represent specific symptoms of varying degrees of severity. Someone with Asperger's can have the same basic symptoms as someone with Pervasive Developmental Disorder, or someone with full blown severe autism. They have been previously thought of as separate disorders as they were discovered, but as similarities bound them together within the autism spectrum, they became identified as separate points within the spectrum.
  2. No two children on the spectrum are the same. Even if they both are diagnosed with Asperger's, often their therapists and parents need to personalize their treatment to their specific needs.

So, I just don't see why it's so necessary to have a diagnosis beyond autism. At least with our experience, once our child has been diagnosed with autism, they qualified for special services. We therefore didn't pursue any additional definitions for our children. This saved money (autism as a diagnosis was not covered by our insurance in Utah), and didn't make that much difference in our children's lives.

Now, that being said, there is the concern that those children and adults that are so high in the Asperger's Syndrome spectrum that they no longer qualify as autism, and therefore would not get the benefit of therapy. Several parents are concerned about this, as they should, because therapy and services can mean the difference between a productive member of society and someone who is eventually placed on disability because they are unable to hold a job or function in society.

I'm not going to debate alternatives, responsibilities, and support avenues outside of formal services, because that is dependent on too many variables. But there is a concern on where the definition ends, where services end, and whether or not they should.

I don't envy those doctors that participated in that DSM committee, because of the level of responsibility that they took upon them in adjusting their definitions. In fact, there is a chance that the overall estimate of children with autism could adjust, throwing the argument of an epidemic into a spin. Still, for my children, labels just don't matter. They are children who happen to have varying levels of autism spectrum symptoms, and as such have the benefits of services to help them succeed. And for me, that's good enough.

December 1, 2012

Fear, Anxiety, and Autism

Article first published as Fear, Anxiety, and Autism on Technorati.

Mom and the boys at Sea World, in front of the Polar Christmas display.

Both my boys have trouble with anxiety.  And because of that, we have fairly rigid daily schedules.  If we don't adhere to the schedule, anxiety sets in and it takes quite a while for them to get over their fears.  It's something we have known about and had linked to their autism, but a researcher at Brigham Young University has taken that correlation a step further.  

As published in the journal Autism Research, professor Mikle South and his research team has identified a direct connection to fear and severity of autism. The research used a puff of air that blew against the chins of a child when a yellow card was shown, and used sensors to measure nervous system reaction. They then mixed it up with a red card, changing the expectations. In the test, they used 30 children with autism and 29 neurotypical children.

The results were interesting. No only did the connection between anxiety and fear increase with children on the spectrum, but children with more severe symptoms of autism took a longer time to overcome their fear.

The research is pretty interesting, as we now know there is a direct link with fear and autism, and can start to treat both in conjunction. It helps parents to know that the anxiety of their children is directly related to their placement on the autism spectrum, and they can now understand why it is happening. And those specialists working with children on the spectrum can better address fear and anxiety.

So, immediate practical applications of this research? Try to control the environment as much as you can. If you go on vacation, have it all planned, run some "trial runs" ahead of time if you can, and you will find it will help. A good example of this is the upcoming How the Grinch Stole Christmas autism specific performance at the Old Globe in Balboa Park, San Diego. They have a "meet your seat" night to help children on the spectrum understand what will happen, and therefore control the fear that may occur when the performance starts. These steps can work, and will need to be repeated more often for children who have more severe symptoms.

It's great to see the research that is coming from professionals out there! Much of it is in rooted in the cause, but it's nice to see some good old practical research being done as well.

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