Article: The Neuroscience of the Gut

Interesting article in Scientific American about how scientists believe that the brain is shaped by bacteria in the digestive tract.

This makes total sense to me, and makes me think about Mac (my eight-year old with ASD).  On top of having numerous food allergies (eggs, dairy, shellfish, nuts), he also has bad problems with food digestion.  We supplement his diet with good digestive bacteria, but if he skips a day or two, look out.  Apparently this is very common in people with ASD.

"In autism and other pervasive developmental disorders, there are reports that the specific bacterial species present in the gut are altered and that gastrointestinal problems exacerbate behavioral symptoms. A newly developed biochemical test for autism is based, in part, upon the end products of bacterial metabolism. "

By the way, how's this for a mind blowing quote - there are approximately 30,000 human genes in the average human compared to 3 million bacterial genes inhabiting us, leading scientists to conclude that "we are at most one percent human."  Did your universe just implode like mine did?

Scientific American

News: British Medical Journal Debunks Popular Study Linking Vaccines to Autism

"U.S. News & World Report states new findings in the British Medical Journal have repudiated a study done in 1998 linking autism and vaccinations. Andrew Wakefield allegedly

 altered the medical histories of five of the 12 children studied after an investigative journalist probed further into the case. Ten of Wakefield's 13 co-authors have renounced the findings and the journal Lancet has retracted the study published in its pages. Detractors of the study now say it wasn't bad science involved but a deliberate fraud."

Link to article

While this goes further to support my opinion, based upon the best existing scientific evidence, that vaccines have no causal effect on autism, this will do nothing to dispel the beliefs of the anti-vaccine crowd.  Andrew Wakefield could go live on television and admit that he doctored the evidence - it wouldn't shake their faith because for most of them its a belief bordering on religion.

*Warning-Sarcasm Alert for the Following*
"The British Medical Journal's continued war on Dr. Wakefield and his groundbreaking studies are further evidence of the scientific and medical community's desire to see that profits from the sales of vaccines are not diminished.  They have also clearly decided that, between the risk of autism and the risk of the illnesses that are being vaccinated against, the latter present a greater health risk to the general public.  Thus they are attempting to fool the public into believing that vaccines present NO risk for autism.  However, this is not their decision to make - it is the parents'."

Or something like that.

Surfing Therapy for Children with Autism

Video here at CBS.com
Eight years ago, surfer Izzy Paskowitz started a surf camp called Surfer's Healing after he noticed how much being in the water had helped calm his autistic son.  "It just works," he says. "I think it's just being in the water. It's therapeutic being submersed in the water. You sniff it and you taste it and you hear it and you cram all that activity into one experience."

I'm definitely signing my son Mac up for this next summer.

Scientific American Rates the Quality of Research for Alternative Autism Treatments

Scientific American  has published a study which gives a letter grade for the quality of research that has been done on alternative treatments for autism (it does NOT rank the treatment's safety and effectiveness).  Most treatments receive a "C" grade.  The only treatment to receive an "A" grade for quality of research was found to be ineffective in treating autism.  Here is a summary of the grade results along with the treatments' benefits (if any).

"A" Quality Research
Secretin (GI hormone) - no benefit

"B" Quality Research
B6/Magnesium - inconclusive
Dimethlglycine - no benefit
Melatonin - improves sleep
Vitamin C - decreases repetitive behavior
Amino Acids - improved expressive and receptive vocabulary
Omega-3 fatty acids - improved behavior
Gluten-free/casein-free diet - inconclusive

"C" Quality Research - all results inconclusive
Folic Acid
Antibiotics
Gastrointestinal medications
Hyperbaric Oxygen Therapy
Immune therapies
Chelation

First Autistic Presidential Appointee Speaks Out

From Wired.Com  - Ari Ne'eman was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for the disabled.  The position he takes is controversial.  He believes the national focus should not be on causation and cure for autism, but instead be on helping improve the quality of life of people with autism.  He does not view himself or others with autism as disabled, but simply different.

Symptoms of Autism Spectrum Disorder (ASD)

Here is some background on my 7 year old son Mac and his eventual diagnosis with ASD.

Mac was a difficult baby to say the least.  Very colicky, we couldn't take him anywhere from the get-go.  If we tried to take him to a restaurant to eat, we would just have to take turns holding him and walking him around the place to keep him from crying.  And man could he cry.  Its hard to believe a creature that small can produce that many decibels.

At this point, no alarm bells were going off for us.  We just figured we had a "high-maintenance" kid.  Up until the age of about two years, he seemed to be developing normally.  He smiled, made eye-contact, and his language development was where it should have been.  His mom and I also didn't know any symptoms of autism or ASD other than what we had seen on television with the most severe cases - no language, no smiling, banging their head against the wall.

Soon after Mac turned two, we started noticing some unusual things.  He would make up words for certain objects and start calling them that.  It didn't matter how many times we gave him the correct word - he insisted on using his own.  Often times, too, when we would try to get him to answer a question, he would just repeat our question instead of answering it.  For example, "Mac, do you feel happy?"  Instead of saying "yes or no" he would respond "happy?" with our same intonation.  In ASD terms, this is known as echolalia.

We also noticed him memorizing lines from shows he watched and then using the phrases in place of actual speech.  For example, he took the line "do you know where the ball is?" from Dora the Explorer, and would use it to convey he had lost something (not a ball).  Again, in ASD terms, this is known as scripting.

Mac was also obsessed with light and fan switches.  His favorite thing to do was to turn lights on and off, on and off, on and off.  It seemed a little OCD, but, again, we figured he had just found something he was interested in, and that he would soon move on to something else.

Another symptom Mac had which we didn't recognize at the time was "hand-flapping."  Whenever Mac would get excited he would start flapping his hands like he was trying to take-off flying.  Again, we just chalked it up to being a quirky personality trait.

As Mac started getting closer to age 3, and his language skills started slipping, we began to get concerned.   Autism was still not even a dot on my radar at this point, be we decided he might need some language therapy to get him up to speed.  We talked with his pediatrician.  While she conceded he was a little behind for his age, she didn't feel overly concerned.  However, she referred us to a speech therapist, and this was where things fell into place.  During our first session with her, she never mentioned the word "autism", but she said she definitely felt like there was something more going on with Mac than just simple speech delay.  The alarm bells were finally ringing for his mom, but I was still in denial.  I had thought it was ridiculous that we were even bringing him to a speech therapist, but the idea that he was autistic was ludicrous to me.  All of the quirky things he did were just Mac being Mac.  But then we started looking into the symptoms of ASD, and all of Mac's strange behaviors started to make sense.  We eventually had him evaluated by ASD experts at UCLA medical center who confirmed what we feared.  We were crushed, and angry out ourselves for not having figured it out sooner, since early therapy and treatment is extremely crucial for children with ASD.

Anger Management

I try to see my kids as often as I can, even if they are at the Other's house during mom's half of the week.   I will usually make up some excuse to stop by and see them.  Last night I brought over my 5 year old's favorite blanket which he had left at my apartment.  My thinking has been that it would make the transition to "divorced" life easier, but I'm starting to wonder.

When I arrived at the house, Mac (my 7 year old son who has ASD (Autism Spectrum Disorder) was riding his bike in the front yard.  It was nearly dark, and his mom and I wanted him to come inside.  We managed to get him into the house with the promise of TV.  However, he soon lost interest in the TV and wanted to go back outside and ride his bike around the neighborhood.  By this time it was dark outside, and we told him he was done biking for the day.  He started getting upset and tried to negotiate, but we weren't having it.  I asked to come with me and sit on the couch to discuss it, which he did.  I told him the reasons why we didn't want him to bike - it was too dangerous to ride at night, it was too close to bedtime, etc.  Mac listened, tried to argue, and then in an angry fashion headed to the door and said he was going to ride despite our objections.

I told him if he headed outside we would put his bike away.  His mom told him she would delete his favorite game from the computer if he disobeyed.  This last one got to him, and he came back inside, however, he was out of control at that point.  He grabbed his mom's arm and bit it, and then attempted to bite me.  We told him if he bit again we would call the police.  That scared him enough to stop biting but he was still seeing red.  Sitting with him on the couch he told me, "I make the rules!  You are no longer part of this family!  Leave the house - you are out of the family!"  I said nothing and let him vent, but then something strange happened.

Almost immediately after he had said those things, he put his hand on my chest to feel my heartbeat.  He couldn't feel anything (I was wearing a couple layers of clothing),  and suddenly got this terrified look on his face.  He burst into tears and kept saying over and over again "I'm sorry I said that!  I'm sorry I said that!" while weeping intensely.

It took a while, but I finally convinced him that my heart was in fact beating.  Within ten minutes he had calmed down and was back playing in the family room.  He made no further mention of riding his bike.

I have to think that the source of his outburst was at least in part the feelings he has about the divorce that he's unable to express.  He was so angry, and wanted to say the worst thing he could think of to me, and that was "you are no longer part of this family."  He was probably also wishing I was dead - that's what scared him so badly when he couldn't feel my heart beating.

I never wanted this divorce, and its killing me to see how its affecting the kids.  I've read books and talked to Mac's therapists.  I've spoken to the kids about it, and reassured them that we are still a family even though mom and dad aren't living together, and that nothing can change that fact.  I hoped that once the kids got used to the new living arrangements, things would calm down for them emotionally, but so far that hasn't happened.

Maybe stopping by for 30 minutes when they're at the mom's is a bad idea.  Its always difficult when I have to leave.  They get upset and are reminded again of the divorce.  It might be easier on them if I just wait until its my turn to see them.

Science's Verdict: Vaccines Do NOT Cause Autsim

http://www.sciencebasedmedicine.org/?p=6775

"There is no detectable correlation between exposure to mercury in vaccines and ASDs [Autism Spectrum Disorders]."

Now, for the love of science, go and get your kids' vaccinated.  That is all.

Fearless

When I got home from work tonite, my kids' nanny told me a harrowing tale about nearly losing them while on an outing.

Mac is my older son.  He is almost 8 years old, and has high-functioning autism.  Mac has a long history of running away and/or disappearing in crowds.  He used to actively run away from us, thinking it was an hilarious game. The more you yelled after him to come back, the funnier he thought it was, and the harder (and farther) he ran.  He did this one time in a Target when he was 6.  He managed to get in between some of the clothes racks, and, just like that, he was gone.  I immediately had visions of him running out the front doors and into the parking lot.  As the minutes ticked by, I began to get more and more panicked.  The store put out the word to all the Target employees, and they finally found him crouched down in an aisle far away from where I had lost sight of him.

His mother, therapists and I worked with him for months and months. He finally quit playing the "running" game.  Whether he just outgrew it, or responded to the therapy, I'm not sure.

Now, instead of running away, he will just wander.  A few months ago, I was with him at the San Diego zoo.  I was with both my parents and his aunt and uncle.  We had stopped at a concession stand to sit and rest for a moment.  Mac was looking at some animals close by.  His uncle, sitting next to me, asked me a question.  I turned, responded, turned back and Mac was gone.  I ran down one direction, couldn't find him.  I ran the other direction.  I still couldn't find him.  All family members were looking for him.  Again, the minutes ticked by, and the panic rose and rose.  Finally,  Mac came back of his own accord.

We've spoken with him over and over again about the dangers of getting lost.  Each time we have the conversation, he seems to get it for awhile.  He'll stick close to us, he'll come back when called.  But then, when our guard is down, he eventually will forget and it will happen again.  Our warnings get increasingly more dire.  We are all but at the point of saying, "if you get lost from us, a bad person will take you away from us, forever, and kill you."  So far, nothing we've said has stuck.

Today it happened again.  Our nanny had taken the boys (Mac and his 5 year old brother) to the bike path in Santa Monica to ride their razors, while she walked.  It didn't take long before the boys were tired of riding slowly next to her and took off down the path.  She did her best to catch up to them, yelled at them to come back, but they didn't listen.  Eventually they were out of sight.  She hurried down the path, panicked.  She came to a three-way fork, and didn't know which way to go.  She looked down one street and saw a police car and officers gathered and imagined they had been hit by a car.  Many minutes passed, and they eventually returned down the path, big smiles on both their faces.  Our nanny has been with us since Mac was 3 months old, and she's seen pretty much everything he can dish out.  She said she had never been so scared.  She told the boys that she would no longer take them out to ride razors because of what they did.

I spoke with Mac about what happened tonite.  He recognized that he had made the nanny extremely scared and angry.  He said that he had had a "sad day" because of what happened.  I once again reminded him that his mommy and daddy (and nanny) loved him, that it was our job to protect him, and that if we didn't know where he was we couldn't protect him.  He seemed to understand, but will it stick?