The vaccine debate has always fascinated me, mainly because the debate is so polarizing that people on both sides of the debate believe religiously, zealously and fanatically that vaccines do or do not cause autism.
I have seen people who believe that there is no genetic connection to autism - it is all environmental even though: The identical twin studies show otherwise; Autism runs in families like mine; Certain genes have been tied to the prevalence of autism.
I have seen people who believe that there is no way autism and vaccines can be linked even though: All of the studies have been done statistically; Not one of the statistical studies has taken a measure of the control group, i.e., the people who have not been vaccinated; The only measure of the control group occurred before vaccines and that showed a much lower rate.
I have seen people who believe that there is no autism epidemic even though: The CDC says there is; The Ethiopians in Minnesota who suffered the autism epidemic when they came to the US had previously had no word for autism; The California school statistics says that there is; No autism epidemic would say that in families with autism, not only our sons and daughters would have autism but our brothers, sisters, aunts and uncles would also have autism.
The autism-vaccine debate has become so polarized that it is more a matter of faith, not a dispassionate observation. This does not bode well for our children.
Wednesday, July 22, 2009
Friday, July 17, 2009
The MRI
Two questions were: What happened? What can be done about it. I had never heard about anyone, autistic or otherwise who had lost skills like David had. Our pediatrician referred David to one of the pediatric neurologists in Children's Hospital here in Denver. The neurologist took blood samples, urine samples and hair samples and ordered an MRI done on David. The MRI required that David remain still. To keep him still, he was anesthetized. The MRI on his brain was done to look at his brain structure.
When David awoke from his anesthesia, he was still drunk from it. He could hardly walk. I did not understand it. I had been through anesthesia and never felt as high as he seemed to when I woke up. But I carried David to the car with the assurance that he would come out of it soon. When I got home David needed to go to the bathroom. He was still staggering. He missed the bowl and was hitting the wall behind the toilet. I had to help him. It was hard to imagine someone coming out of anesthesia like David did, especially being only seven years old. I had heard that when old people come out of anesthesia, sometimes they can take a long time to get over the effects. Now that I know that there are physiological differences between autistics and the normal population, this behavior after anesthesia makes more sense.
The MRI showed that David's amygdala was slightly smaller than normal. The ped-neuro explained that this is normal among autistics and that if it was swollen, then David would be profoundly autistic. It is another physiological difference between autistics and the normal population.
Finally, David showed no signs of heavy metal poisoning or anything else that might explain why David suffered the skill losses that he did.
Years later, David solved this medical mystery that plagued him and I would relive this chapter of my life over and over.
When David awoke from his anesthesia, he was still drunk from it. He could hardly walk. I did not understand it. I had been through anesthesia and never felt as high as he seemed to when I woke up. But I carried David to the car with the assurance that he would come out of it soon. When I got home David needed to go to the bathroom. He was still staggering. He missed the bowl and was hitting the wall behind the toilet. I had to help him. It was hard to imagine someone coming out of anesthesia like David did, especially being only seven years old. I had heard that when old people come out of anesthesia, sometimes they can take a long time to get over the effects. Now that I know that there are physiological differences between autistics and the normal population, this behavior after anesthesia makes more sense.
The MRI showed that David's amygdala was slightly smaller than normal. The ped-neuro explained that this is normal among autistics and that if it was swollen, then David would be profoundly autistic. It is another physiological difference between autistics and the normal population.
Finally, David showed no signs of heavy metal poisoning or anything else that might explain why David suffered the skill losses that he did.
Years later, David solved this medical mystery that plagued him and I would relive this chapter of my life over and over.
Sunday, July 5, 2009
How do I be God?
I have to say that I was in shock at what had happened to David. He went from a gifted and talented, albeit autistic, child to one who simply could not retain anything that was taught to him.
David, do you know what 6 + 7 is?
Uh, no.
I tried using counters so that he could see how they could be manipulated so that visually 6 + 7 would be 13. After I the manipulation, I said,
See, it's 13.
Oh.
Thirty seconds later I asked him again,
What's 6 + 7?
I don't know!
And David cried. At the time, David would have to be very emotional before he would say anything more than a few words. This was more than he could bear.
Dad, how do I go back?
How do you go back where David?
How do I go back to being a baby?
At that point I knew that David understood that he had lost something and I wanted to cry with him, not only for what he had lost, but because I was afraid that this was only the start. Something had bitten off a piece of what had been David and I was afraid that that shark was still lurking in the water.
You can't go back, David.
I have to!
You can't and I can't do that for you.
Who can?!
Only God can, David.
How do I be God?
You can't be God, David. Only God is God.
The arithmetic lesson was over and for the next two hours, I learned the meaning of the word perseverative. David's math abilities were gone and replaced with perseverative behavior.
David, do you know what 6 + 7 is?
Uh, no.
I tried using counters so that he could see how they could be manipulated so that visually 6 + 7 would be 13. After I the manipulation, I said,
See, it's 13.
Oh.
Thirty seconds later I asked him again,
What's 6 + 7?
I don't know!
And David cried. At the time, David would have to be very emotional before he would say anything more than a few words. This was more than he could bear.
Dad, how do I go back?
How do you go back where David?
How do I go back to being a baby?
At that point I knew that David understood that he had lost something and I wanted to cry with him, not only for what he had lost, but because I was afraid that this was only the start. Something had bitten off a piece of what had been David and I was afraid that that shark was still lurking in the water.
You can't go back, David.
I have to!
You can't and I can't do that for you.
Who can?!
Only God can, David.
How do I be God?
You can't be God, David. Only God is God.
The arithmetic lesson was over and for the next two hours, I learned the meaning of the word perseverative. David's math abilities were gone and replaced with perseverative behavior.
Saturday, June 27, 2009
Oh what a change
In late September of second grade, David changed, and not for the better. Here was a kid who, though autistic, was in many ways far ahead of the rest of the class. David had been able to add with carry, subtract with borrow, knew multiplication tables and was emerging with division. He knew negative numbers. He had been a prodigious speller, in that he would see a word and just know how to spell it. All of that dissappeared. If David wanted to add past five, he had to use his fingers. Spelling became a struggle for him, though he was able to keep up with the rest of the class.
It was one of the hardest times of his and consequently my life. I had been advised that sometimes learning disabled children forget what they learned. But when they do, they should relearn what they lost with the same facility that they had learned before. David had absorbed math and spelling like a sponge without any intervention required. He was not relearning what he had lost. It was clear in my mind. Something changed with David. I just did not know what. The math and the spelling ability were a part of him. David had lost it and he knew it.
It was one of the hardest times of his and consequently my life. I had been advised that sometimes learning disabled children forget what they learned. But when they do, they should relearn what they lost with the same facility that they had learned before. David had absorbed math and spelling like a sponge without any intervention required. He was not relearning what he had lost. It was clear in my mind. Something changed with David. I just did not know what. The math and the spelling ability were a part of him. David had lost it and he knew it.
Friday, March 20, 2009
What a beautiful time 1st grade was
A lot of things happened in first grade. David was blossoming. He was learning how to talk. He was participating in class. He was learning how to read. I read to him all the time. We could let him out the door and watch him walk down to the cross walk where the crossing guard would escort him and other children across the street. He was able to spell just from seeing the word. And best of all to an engineer like me, he was at the top of his class in math. He could add with carry, subtract with borrow. He knew the difference between negative and positive numbers. He just about had his multiplication and division tables down. He had gotten through the issue of not sleeping through the night. For the father of an autistic child, I was in heaven.
David's teacher was getting a master's degree. One of the classes that she took was a class on teaching children with disabilities like cerebral palsy, Down's syndrome, fetal alcohol syndrome, mental retardation and autism. She asked me to come talk to the class to talk about what it was like to raise an autistic child. I agreed. I had a lot to talk about. I felt that I would not wish autism on anyone, but if you had to have an autistic child, David was the one you would want.
I came to her night class with a set of 3x5 cards. Each of them had a subject on it that I could discuss in the class. I was scheduled for 45 minutes of the hour and 15 minute class. I took an hour and 10 minutes. I could have gone for another hour. The class was pleased. David's was a story of a very positive progression in spite of being autistic. It was uplifting for everyone including me. We all cheered for David at the end of the class. I had no idea what David and as a result, the rest of us were in for.
David's teacher was getting a master's degree. One of the classes that she took was a class on teaching children with disabilities like cerebral palsy, Down's syndrome, fetal alcohol syndrome, mental retardation and autism. She asked me to come talk to the class to talk about what it was like to raise an autistic child. I agreed. I had a lot to talk about. I felt that I would not wish autism on anyone, but if you had to have an autistic child, David was the one you would want.
I came to her night class with a set of 3x5 cards. Each of them had a subject on it that I could discuss in the class. I was scheduled for 45 minutes of the hour and 15 minute class. I took an hour and 10 minutes. I could have gone for another hour. The class was pleased. David's was a story of a very positive progression in spite of being autistic. It was uplifting for everyone including me. We all cheered for David at the end of the class. I had no idea what David and as a result, the rest of us were in for.
Friday, February 27, 2009
Exogenous or endogenous
I pose this question to the autism community. Is autism exogenous or endogenous to the brain? That is, is the cause or the origin of autism external to the brain or is the cause inside the brain. Are the brain issues from something happening inside the brain or do they originate from a condition outside the brain?
For many this question will be meaningless. For others, it may even be threatening. But for you in the autism community who play bridge, it is a trick question. For those of us who play bridge, we often play hands where the only way to make them is for the cards to lie a certain way. When that happens, the professionals who write bridge columns in the newspaper tell you that if the cards have to lie a certain way to make the hand you assume that the cards lie that way and play to win.
If autism is endogenous, then everything lies behind the blood brain barrier. Any drug or treatment that would be applied to an autistic individual has to penetrate the blood brain barrier without compromising it. To compromise the blood brain barrier to treat autism is to fix one problem while causing another. Gene therapy is a long time away and may not happen in my lifetime or even my autistic son's lifetime. The assumption that autism is endogenous is a losing assumption, even if it is right.
On the other hand, if autism or its symptoms are exogenous then they lie outside the blood brain barrier and therefore are treatable. It would then be possible for effective medical treatment to be found in my lifetime and the lifetime of my son. That makes the assumptim that autism is exogenous a winning assumption, even if it is wrong. When it comes to autism, I want to play to win.
Fortunately, there are indicators that autism or at least some of its symptoms are exogenous. The first indicator that I saw came from Dr. Rosemary Waring. She measured how long it took autistic children to process tylenol through their bloodstreams and out through their kidneys. Autistic children were almost without exception statistical outliers taking statistically impossible times given they were part of the normal population. Autistics, like alzheimers, parkinson's, down's syndrome, Lou Gehrig's, alcoholic's dementia all have abnormalities in glutathione levels with the levels being low. The reason for the GFCF diet is that peptide products were found in the urine of many autistic children. These peptides belong locked up in the intestines and not in the blood stream. If the blood gut barrier is compromised, does it not also stand to reason that the blood brain barrier could also be compromised? Note that all of these are occurring outside the brain and therefore they should be treatable.
This posting is meant to inform the reader of my opinion. Autism is most likely exogenous and therefore should be medically treatable. Indicators are not proof, but I will not try to prove this. The exogenous assumption is a winning assumption and the endogenous assumption is a losing assumption. For my son's sake I will only bet on the exogenous assumption.
For many this question will be meaningless. For others, it may even be threatening. But for you in the autism community who play bridge, it is a trick question. For those of us who play bridge, we often play hands where the only way to make them is for the cards to lie a certain way. When that happens, the professionals who write bridge columns in the newspaper tell you that if the cards have to lie a certain way to make the hand you assume that the cards lie that way and play to win.
If autism is endogenous, then everything lies behind the blood brain barrier. Any drug or treatment that would be applied to an autistic individual has to penetrate the blood brain barrier without compromising it. To compromise the blood brain barrier to treat autism is to fix one problem while causing another. Gene therapy is a long time away and may not happen in my lifetime or even my autistic son's lifetime. The assumption that autism is endogenous is a losing assumption, even if it is right.
On the other hand, if autism or its symptoms are exogenous then they lie outside the blood brain barrier and therefore are treatable. It would then be possible for effective medical treatment to be found in my lifetime and the lifetime of my son. That makes the assumptim that autism is exogenous a winning assumption, even if it is wrong. When it comes to autism, I want to play to win.
Fortunately, there are indicators that autism or at least some of its symptoms are exogenous. The first indicator that I saw came from Dr. Rosemary Waring. She measured how long it took autistic children to process tylenol through their bloodstreams and out through their kidneys. Autistic children were almost without exception statistical outliers taking statistically impossible times given they were part of the normal population. Autistics, like alzheimers, parkinson's, down's syndrome, Lou Gehrig's, alcoholic's dementia all have abnormalities in glutathione levels with the levels being low. The reason for the GFCF diet is that peptide products were found in the urine of many autistic children. These peptides belong locked up in the intestines and not in the blood stream. If the blood gut barrier is compromised, does it not also stand to reason that the blood brain barrier could also be compromised? Note that all of these are occurring outside the brain and therefore they should be treatable.
This posting is meant to inform the reader of my opinion. Autism is most likely exogenous and therefore should be medically treatable. Indicators are not proof, but I will not try to prove this. The exogenous assumption is a winning assumption and the endogenous assumption is a losing assumption. For my son's sake I will only bet on the exogenous assumption.
Sunday, February 22, 2009
At the Day Treatment Center
When David was four, we moved him from Developmental Pathways to the Day Treatment Center. It was more expensive. It meant that we would have to take him there ourselves. It meant a far greater commitment on our part than we were required with Developmental Pathways. But Yvette and I felt that David would have more intensive and more productive intervention at the Day Treatment Center. When an opening came up we moved David in.
I took David to his first day at the center myself. I was there to introduce him to his new environment, to the other students, to the teachers. When I set David down though one of the other children walked over to David and bopped him. I was surprised at this. But David did not cry. He just acted as if nothing happened. It was an inauspicious beginning, but the rest of the day went fairly well.
I had potty trained David and the staff was delighted. David was used as the older sibling who helped show the others how it was done. Movies were taken of David being taught how to take turns, and socialize with other children. I have to say that David got a lot out of the center and that without that experience, school would have been a lot harder.
I took David to his first day at the center myself. I was there to introduce him to his new environment, to the other students, to the teachers. When I set David down though one of the other children walked over to David and bopped him. I was surprised at this. But David did not cry. He just acted as if nothing happened. It was an inauspicious beginning, but the rest of the day went fairly well.
I had potty trained David and the staff was delighted. David was used as the older sibling who helped show the others how it was done. Movies were taken of David being taught how to take turns, and socialize with other children. I have to say that David got a lot out of the center and that without that experience, school would have been a lot harder.
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