Utah Open Source Planet

My wife and I decided to try the diet with our son and see if it would improve his behavior positively.  Unlike medicating him, a diet is easily reversible if necessary, and doesn’t have any adverse effects overall.  Of course, it means looking for the right resources, and has far reaching implications if it turns out his behavior is caused or aggravated by gluten or casein.  So, we thought we would try out the alternatives.  

For Gluten, we purchased some Gluten Free/Casein Free flour from our local grocery store.  Smiths, Albertsons, and Harmons all had this same flour, all for about $5.00 a pound.  It’s expensive, but for a trial it is worth it.  We also purchased (from the same makers) some gluten/casein free brownie mix, polenta, and chocolate chip cookie mix. 

The first one we tried was the brownies.  They were easy to mix, and the batter tasted the same.  The only thing I didn’t add to it was the recommended vanilla, but other than that all was mixed according to the instructions.  Once finished, I spread it out in a pan, and baked according to directions.  

I was amazed!  They came out very moist, and have retained that moisture far longer than other brownies I have ever made.  More cake-like than the traditional gooey brownie you may think of, it’s been quite impressive.  I was sold, and my son ate it with relish (and he doesn’t normally eat anything but icing on cake-like products).  It’s still too early to tell, but I think we had a hit with these brownies.  

Next, dealing without milk.  Casein is one of the primary milk proteins, making any milk-based product a problem.  And a huge problem, as my son has almost an addiction to cottage cheese (though that may make sense if it’s becoming an opiate in his system).  So, how to break him of his milk kick? 

I started with the replacement milks:  soy and rice.  Now, I’m not a big fan of soy based products.  Soy is another food high on the food allergy list, and it’s not something I wanted to try on Jonathan at such an early age.  So, I tested it myself.  

The soy milk we purchased was a small one quart carton of Silk, which was calcium fortified.  I poured a small amount in a cup and tasted it:  it was really sweet and surprisingly good!  I gave some to Jonathan, and he drank it, and took more.  A small victory, and no side effects.  

Next, I tried the rice milk.  We could only find a two quart carton, so we purchased that.  I poured it out, taking a small taste.  It paled in comparison to the soy milk.  It had less flavor out of the carton, and seemed more watered down.  I tried it on Jonathan, and he took a taste and poured it out on the floor.  Well, the verdict was out, he didn’t like it.  But I may try it again on him in another form, because he did try it just after tasting the Soy milk.  

So, that has been our experience so far.  As it stands, the conversion hasn’t been too difficult with Jonathan eating more fruits and almost no cheese (just need to continue to remind the in-laws of the new diet), and his behavior has improved noticeably.  We are cautiously optimistic on this front.  

Parents with autistic children are always looking for something to link a change that causes autism.  The thing is, there isn’t a single cause that is yet discovered or understood.  We don’t know what causes autism, because we don’t know really what autism is beyond a behavior disorder.  But, there is some evidence that a change in diet can increase the chance of autistic children to alter their behavior. 

The evidence I am referring to is potential link to food allergies and autistic behavior.  It’s been documented at autismweb.com.  It seems that there is a possible reaction to gluten and casein that can cause autistic behavior.  It’s because the body produces an opiate that causes a reduction in attention, eye contact, and overall speech.  

Now, the research on this is pretty mixed, as it has been fairly new to the clinical focus.  Many trials done came up with little statistically significant results, while some found some real results.  

The department of Pediatrics at the University of Maryland School of Medicine did a study on the effects of Peptoids on autistic children that exhibited gastrointestinal problems.  These problems include vomiting, stomach aches, and diarrhea.   

The findings were promising, in that eye contact and verbal communication increased.  While it is not a “smoking gun” for autism, it is something to focus on for parents when they go to their doctor.  

Now, I want to make it perfectly clear that removing gluten and casein is not the end all beat all for autistic children.  Several other clinical studies did not find a link, and in fact found no statistically significant results.  But there is a potential link, and it gives some hope.  

The first thing to do is to talk to the doctor.  We are going to take out son in and talk to him about the research done, see what he thinks, and go from there.  Next, check to see if my boy has an allergy or sensitivity to gluten and/or casein.  If so, then the next thing is to obviously remove them from his diet.  It isn’t going to be easy, he loves his cottage cheese.

Any parent with an autistic child will look for something that may have triggered autism in the family.  As there has yet to be a gene discovered that causes autism, more focus is being made on the possible causes in the environment.  

One modern concern is that vaccines with thimerosal, a mercury-based compound used in some vaccines as a preservative, could be causing autism.  Why?  Because autism is very similar in symptoms to mercury poisoning, and all children get several series of vaccines before they are 2.  The timing is right, the source is identified, everything seems to be pointing in the right direction:  Except there is no scientific proof that thimerosal causes autism.  

But that isn’t stopping some families, which have gone to court.  Most studies rejecting thimerosal as a cause of autism were conducted before 2004.  Since then, according to the plaintiff’s lawyer, 35 articles that were peer-reviewed and published suggest a possible link.  That is what their court argument is running on.  

The problem is they have a huge opponent:  The US Center for Disease Control has not found any link, and therefore considers the claim baseless.  Instead they warn parents to the dangers of not having their children vaccinated.  In fact, there was a recent article on a national outbreak of measles among children.  The MMR vaccine should be protecting them, so either the vaccine is not working or parents are not letting their children have the vaccine. 

What’s my take on it?  Children need to be vaccinated.  Vaccines are very important, particularly for those diseases that are very dangerous (small pox, polio, measles, etc.).  The good news is that thimerosal is being used less and less, and was actually removed from most infant vaccines in 1999.  

Where is it still being used?  The Flu shot.  So, don’t give your children the shot, have them use the nose spray instead.  It was recently approved for child usage, and works just as well.  There are some other shots that you should look out for, and if you have any questions or concerns, ask your doctor.  There are alternatives to thimerosal vaccines for those parents that are concerned, and your doctor can help you make that decision.   

Today my wife was feeling really bad, and we needed to work out a way for my son to get to school and get home.  So, I took a sick day to take care of my wife and my son.  So I ran to work first to set up the CCNA Bootcamp that started today, and then I ran back home to take my son to school.  

Once there, I checked with my son’s teacher and told her the results of his psychologist visit.  Jonathan couldn’t wait to start playing, and ran right in with the other children.  

I then came home, did some yard work, got some Jello for my wife, and then headed back to get my son.  He was sitting on the teacher’s lap, and looking at a book!  Now, you may think this isn’t a big deal, but my son has no attention span for books as part of his disorder.

As we were leaving, he gave his teacher some eye contact.  Eye contact!  He doesn’t give people eye contact, as part of his disorder.  This is a huge advancement for him.  It means that he is working through his disorder in order to communicate.  

Overjoyed, I brought him home.  He then asked for juice, which he never has before.  His vocabulary is growing, and each day I get more and more excited.  He’s spending more time indicating, and less time trying to make me get what he wants.  Of course, he still wants to do things on his own, and I’m still willing to let him dress himself and get his own dinner.  But all things considered, I’m excited that he is willing to include us in his life.  

This week we took my son in to the Psychologist for another evaluation.  His intelligence was evaluated, as well as his motor skills, and a huge focus on his interaction.  The psychologist was a little distant, perhaps a little exhausted by the end of the day, but did a fantastic job. 

What was interesting was his final conclusion:  He doesn’t think that our son is particularly Autistic.  Probably based on the questioning look on my face, he mentioned that he thinks my son may in fact have Asperger’s syndrome, which is similar to Autism but different on many levels.  This really took my by surprise, because I have been spending most of my time learning about Autism and had no knowledge of Asperger’s syndrome. 

Asperger’s syndrome begins roughly the same time as Autism, and is so similar in it’s onset to Autism that many children are misdiagnosed.  The main symptoms are delayed speech and focus on specific items/subjects.  It actually is very similar to the overall “Robb” behavior, that of very shy boys that are rather knowledgeable in their chosen fields.  But if it’s a common Robb trait, it’s all been at such a minor level that it hadn’t been an issue.  

So how is this different than Autism?  Autism has a higher social impact, as well as a higher verbal impact.  Many autistic children have their intelligence affected (with the exception of high-level Autism), while Asperger’s children tend to have higher than average intelligence.  And finally, Asperger’s children tend to have a better chance of becoming main-streamed in society than Autistic children.  

Now, the psychologist still said he will call it Autism for our son for now, because of one thing:  his almost total lack of interaction with people.  My son is very much in his own world, rarely interacting with other children or adults outside of a few select family members.  It actually takes some time before he “let’s you in”.  He just recently started to acknowledge my mother, which thrilled her pieces.  This is not a common trait in Asperger’s, but is very common for Autistic children.  

The one thing that has me hoping for Asperger’s is the chance that my son could start talking within a few months, and in full sentences.  Autistic children have a lesser chance of talking in general, while Asperger’s syndrome has a faster catch-up time for speech and communication.  

There is one more disorder that I haven’t mentioned, which is PDD.  PDD, or Pervasive Developmental Disorder (of which both Autism and Asperger’s are a part), is more like a “middle” road as far as speech is concerned.  Children tend to start speaking around 7 or 9, and catch up quite quickly from there.  

So, what does this all mean?  Well, it means that we continue to work with him.  The psychologist gave us a more targeted model for our son, so we can work with him more directly.  It involves parallel play that moves to interactive play, making him say “hello” and “good-bye” to everyone in the room, work on eye contact, and specifically work with common signs to get him communicating.  He will provide 30 things in particular to work on that focuses in these areas, which is perhaps the best thing we could have gotten.  

So while I’m grateful for the help and support that Pre-School is giving him, nothing is more stressful in feeling powerless to help your child.  Now we know what to do, and why we need to do it.  We are now empowered to help our son, and can go at it with a will.  It’s amazing what a targeted program can do.  

Today is World Autism Awareness Day, and as the father of an aspie, I’d like to encourage everyone to take a moment to learn a little more about Autism. 1 in 150 children are diagnosed with Autism.

There are some great resources out there to learn more about Austism:

• www.autismspeaks.org
• http://en.wikipedia.org/wiki/Autism
• http://en.wikipedia.org/wiki/Asperger_syndrome

Wired had a great article in February. CNN is doing a full day of coverage. And the Sundance Channel will be showing Autism Everyday.

Recently my 3 year old son was diagnosed with autism. We took him into a speech therapist after I finally convinced my wife and her family that his lack of speech at 3 was not normal and needed to be addressed. The speech therapist diagnosed his speech development at 11 months, and identified some common behaviors that were typical with autistic children.

At this point, my mind seemed to turn off. I was concerned for my son's chances of having autism, because my older brother has symptoms similar to autism. This brought about a lot of fear, anxiety, and almost hopelessness because I didn't know much about autism other than stories of severe cases.

The therapist reminded me that he couldn't diagnose autism, but gave us some options for speech development and recommended us to the University of Utah for his actual diagnosis. My wife cried as we went home, and I remained numb. We started that day to get our son into the system, which could (and does) take weeks to get to the end goal of getting help for him.

Since then we have met with a behavioral specialist, and I started doing some research online to understand autism. I checked out the National Autism Association website, which gave me a lot of good information.

Autism isn't genetic, though it does tend to run in families. The reason why they don't call it genetic is because researchers have yet to find the "autism gene" that would identify autistic characteristics. That, and the fact that autism diagnoses are more common, suggest that autism is environmentally triggered. The problem is, the trigger hasn't been found.

Some believe that autism is caused by immunizations due to a mercury-based preservatives, though it has yet to be proven. There are also a lot of similarities between mercury poisoning and autism, but again it hasn't been proven conclusively to be the link.

While speaking with the behavioral specialist, she noted that my son has a very mild form of autism that is effecting only his speech and interaction. This is because he has already started to write his own name (on his own, I might add), and has mastered many skills that other children his age are not commonly doing. His comprehension and problem-solving skills are impeccable, which really impressed the specialist.

So, now I no longer feel as afraid or concerned for my autistic son. He is scheduled for pre-school, where he will have his own teacher that will work only with him. They also figure that he will be fully main-streamed into the school system by the first or second grade. We are also going to work on his speech at home with a combination of pictures and American Sign Language, to help him better communicate his needs and wants.

And the most encouraging news so far: my son has started talking! He's speaking words more than once, and being more regular in his communication. While most parents with 3 year olds are complaining about the incessant questions and talking of their kids, my wife and I rejoice in every slurred word my son says more than just once. Our dream is to have our son rise to his full potential and overcome his disability.

I know that this isn't a normal post for my blog, but I want to reach out to any readers that have autistic children, or are concerned about their child's development. Autism covers a range of severity, and most autistic children tend to be exceptionally intelligent. They just have trouble communicating or interacting. If you have any questions or concerns regarding your child's development, get them tested as early as possible. The earlier they are tested and diagnosed, the better their chances are to halt and even reverse the symptoms.