Before I begin talking about my decision to look for something more, I should talk about David's state of being when he started fourth grade. There were a number of different aspects to this and they can only be enumerated:
1. David still could not do math. He could not add past 5 consistently without counting on his fingers.
2. David had lost his prodigious spelling ability. Being able to look at a word and remember how to spell it was gone. His spelling, while one of the high points in the Individualized Education Program (IEP), was only mediocre. It was a struggle for him to learn new words.
3. David required ritalin to attend in class. Without it, David would be disruptive. David did not like ritalin. I didn't either. When he got home, we did not give any further doses. He would start to crash at about 5 o'clock which was when I got home from work. From 5 to 7 o'clock was kept free of anything except for dinner. Homework began at seven when the ritalin crash was over.
4. David perseverated when he got upset. He became the "W'appen" boy. Each time he got upset, and homework upset him a lot, there would be a long string of "What happens if" questions. Once that started, it was difficult to steer him away from them and get him back on task.
What happens if I don't do it?
You don't get that choice.
What happens if I get that choice and I don't do it?
You have to do it anyway.
What happens if I can't?
I will teach you so you can.
I am not sure just how long David could have kept this up. I only know that it was longer than I could. It was a daily struggle to keep him away from perseveration and on task when he was doing his homework.
5. It was every bit as painful for David to maintain eye contact with his homework as it was to give eye contact with me. I often had to cradle him in my arms and hold his finger in place to point at the homework. Still, he would drift off task and I would have to bring him back on. His homework typically took 2 to 3 hours each night to get through.
6. David's reading and writing were dismal. He could not maintain any coherence to his thoughts. He could not stay on task long enough to allow him to read more than a paragraph at a time. He could not stay on task long enough to write more than 3 sentences at a time even with me there to help him through. Each year when the other children were progressing David remained back at first grade abilities.
7. After two years of trying, I could not say that David made any significant progress in his math abilities since he suffered his skill losses at the beginning of second grade.
I would be lying if I said that there was never any time when I was ready to give up. All of this repetitive work, all of the disruptions David would create, the time away from the rest of my family were hard. In that time I came to a few conclusions.
1. ABA and other behavior methods were extremely time consuming. They required more time than I or the school could rightly devote.
2. The efficacy of ABA and other behavior methods depends on the receptiveness of the child's brain.
3. That receptiveness is a medical issue.
4. While ABA and other behavior methods have given us a tool these methods are not the final answer.
5. The next breakthrough in autism has to be medical.
6. The medical community only has their psychiatric drugs to manage the behavior of autistic children and adults. Each of these drugs has a long list of side effects. These side effects can be serious including suicide, addiction and seizures.
I could see the day when David would no longer be manageable at home, when my wife and I would be too old to care for him, when he would be too disruptive for his brother or sister to take him in, when he still could not handle life well enough to care for himself. I wanted more for him. The place to look could only be in medicine.
The medical community research has been dismal, with the largest block of research time dedicated to proving that autism and vaccines are not related. I realize that this is almost slanderous since starting with the conclusion and working backward is not how research should ever be done. If you start with the conclusion that 1=2 then you can find proof of it. The most damning thing about modern medicine's autism research is that in the 20 years since my son's diagnosis there has been no medical progress. I have done enough medical research to know that there are medical differences between autistics and the rest of the population. With medical differences there should be medical tests that can be run to diagnose autism. I know of no such test.
There it was. If I wanted to see a breakthrough with David it had to be medical. Back then, I concluded that I would not get any such breakthrough out of the medical community. To date, the medical community has done nothing to prove that conclusion wrong. If David was to have any medical change it would have to be through my own effort. I reluctantly decided to start looking. It was an insane decision. I knew less about medicine than I knew about Arabic script. I felt like I was looking for gold in the Himilayas without knowing what color it was. Still, I ran across other clueless prospectors searching for something more. I also ran across medicine men who felt like, while they had no more than their psychiatric drugs to offer, I had no business trying anything that was not approved by the medical community. Medicine men may sound derogatory, but that was and still is the level of medicine for autistic issues.
If you are a doctor or a medical researcher and you sneer at this decision, know this: You have nothing to offer besides your psychiatric drugs and I am not looking for a management tool. You deride anyone who says that there could be a link between autism and vaccines, yet you can offer no other explanation for autism. You can't even come up with a diagnostic test for autism. Explicitly or implicitly stated, your answer is for us to live with it. I chose to reject that answer and even if David had made no progress I would have no regrets for that decision.
Sunday, October 25, 2009
Sunday, October 11, 2009
Criticism from the right, correct and knowledgeable
Back in the Dark Ages, the earth was the center of the universe and it was heresy to say otherwise. The mathematicians of the day managed to predict star positions using this theory with accuracy of 2%. Using such a theory it would be possible to navigate by the stars and get from Barcelona to Rome. If Galileo had gone to navigator and told him that his theory was all wrong but he could not tell the navigator how to get from Barcelona to Rome, the navigator's response would be for Galileo to come back when he had a better answer. While Galileo knew that the earth was not the center of the universe, he also knew that the earth and other planets revolved around the sun. That was something on which the world could build. Later with Galileo's knowledge, we could navigate by the stars from Barcelona to Rome.
I wish the medical community had that much to offer the autism community. To date, they can only tell us that it is not vaccines, it is not metals. When I hear ideas that a potent neurotoxin that is routinely added as a preservative to infant vaccinations might be to blame, that idea ranks as plausible though unproven. The medical community and the "scientists" called the idea absurd from the start. Why? It threatened one of the pillars of the medical arts, vaccinations. On the other hand, I have heard other ideas such as:
There is no epidemic. It is all in the diagnostics. Can you imagine how the medical community would react if someone were to say that there is no AIDS epidemic. The AIDS epidemic does not threaten the vaccination program so I expect that any such statement would get a vociferous response.
Apoptotic cell death. Apoptotic cell death is programmed cell death. The same doctor I heard come up with this one decried the possibility that vaccines could be related to autism as impossible. I rank this one with spontaneous combustion.
My message to the medical community is two fold. First while chelation, HBO, GF-CF diets may not work, the best way to sweep them out of the public's mind is to come up with something that works. And no, your psychiatric drugs only make the autistic person more manageable. They do not make them better. Second, I have my own ideas about what autism is and while I acknowledge that they can be just as wrong the geocentric theory of the Dark Ages, my son had figuratively navigated from Barcelona to Rome after being stuck on a sand bar for several years. Is there any among the scientists and medical community who would claim that he/she could have done as well?
I don't hold out much hope for the medical research community. The work of Dr Rosemary Waring ties autism back to the trans-sulfation processes. It is too easy to tie the trans-sulfation processes back to the mercury, the aluminum, the formaldehyde used in vaccinations. It is a thread that I predict will not be pulled. The medical community is unequivocal, dogmatic, and obstreperous about the lack of a link between autism and vaccinations.
In fourth grade, David had not made any progress since he had his skill losses. ABA and other behavioral therapies are a godsend to the autism community. They work. But they only work to the extent that the autistic brain is receptive to them. Like so many other parents, I had to seek out something more than behavioral therapy. Unlike the "scientists", I do not blame parents for going to vitamin therapy, chelation, HBO, GF-CF or other therapies even though I know that their efficacy is questionable. I have been in these parents' shoes.
David is still autistic. But he is functional. He drives. He can socialize. He is studying electrical engineering in college and doing well. I do not claim that what I did with him would work for any other autistic child. Still, there are going to be those among you who after reading this history will say that what I did with him had nothing to do with his progress. I expect that because while in no way does it prove a link between autism and vaccines, it comes too close to that implication. Have a ball and trash my son's history if you must. But understand this. In fourth grade, David was not functional. Now he is. Some of the transitions were miraculous. No amount of trashing will take that away. I accept that I may be navigating following the stars with a geocentric theory. It does not matter. David and I got where we needed to go. So while I explain the history you can say what you want, secure in the knowledge that I can only be wrong. I am secure in the knowledge that with nothing to offer you could not have done better.
I wish the medical community had that much to offer the autism community. To date, they can only tell us that it is not vaccines, it is not metals. When I hear ideas that a potent neurotoxin that is routinely added as a preservative to infant vaccinations might be to blame, that idea ranks as plausible though unproven. The medical community and the "scientists" called the idea absurd from the start. Why? It threatened one of the pillars of the medical arts, vaccinations. On the other hand, I have heard other ideas such as:
There is no epidemic. It is all in the diagnostics. Can you imagine how the medical community would react if someone were to say that there is no AIDS epidemic. The AIDS epidemic does not threaten the vaccination program so I expect that any such statement would get a vociferous response.
Apoptotic cell death. Apoptotic cell death is programmed cell death. The same doctor I heard come up with this one decried the possibility that vaccines could be related to autism as impossible. I rank this one with spontaneous combustion.
My message to the medical community is two fold. First while chelation, HBO, GF-CF diets may not work, the best way to sweep them out of the public's mind is to come up with something that works. And no, your psychiatric drugs only make the autistic person more manageable. They do not make them better. Second, I have my own ideas about what autism is and while I acknowledge that they can be just as wrong the geocentric theory of the Dark Ages, my son had figuratively navigated from Barcelona to Rome after being stuck on a sand bar for several years. Is there any among the scientists and medical community who would claim that he/she could have done as well?
I don't hold out much hope for the medical research community. The work of Dr Rosemary Waring ties autism back to the trans-sulfation processes. It is too easy to tie the trans-sulfation processes back to the mercury, the aluminum, the formaldehyde used in vaccinations. It is a thread that I predict will not be pulled. The medical community is unequivocal, dogmatic, and obstreperous about the lack of a link between autism and vaccinations.
In fourth grade, David had not made any progress since he had his skill losses. ABA and other behavioral therapies are a godsend to the autism community. They work. But they only work to the extent that the autistic brain is receptive to them. Like so many other parents, I had to seek out something more than behavioral therapy. Unlike the "scientists", I do not blame parents for going to vitamin therapy, chelation, HBO, GF-CF or other therapies even though I know that their efficacy is questionable. I have been in these parents' shoes.
David is still autistic. But he is functional. He drives. He can socialize. He is studying electrical engineering in college and doing well. I do not claim that what I did with him would work for any other autistic child. Still, there are going to be those among you who after reading this history will say that what I did with him had nothing to do with his progress. I expect that because while in no way does it prove a link between autism and vaccines, it comes too close to that implication. Have a ball and trash my son's history if you must. But understand this. In fourth grade, David was not functional. Now he is. Some of the transitions were miraculous. No amount of trashing will take that away. I accept that I may be navigating following the stars with a geocentric theory. It does not matter. David and I got where we needed to go. So while I explain the history you can say what you want, secure in the knowledge that I can only be wrong. I am secure in the knowledge that with nothing to offer you could not have done better.
Friday, September 4, 2009
It is all in the statistics
The medical community and a host of others claim that the proof is out there if we would only look. There is no connection between autism and vaccines. For those of us who have looked and for those of us who have not looked, the proof offered is statistical. As an engineer, I have learned about statistics and about the design of statistical experiments. So if I were looking to see if there is a relationship between autism and vaccines, (note I said relationship, not causal relationship) I would do the obvious experiment. I would compare the rate of autism among those the vaccinated population and the unvaccinated population. We already know the autism rate in the general population, at least to an approximation at 1 out of 160 children are autistic. With the rate of unvaccinated children being so low, the autism rate among the vaccinated children will be similar to what they are in the general population. (This assumes that the reader is willing to say that the autism rate does not increase with decreasing vaccinations.) What is missing are the statistics among unvaccinated children.
I am always amazed at the reaction among the pro-vax community when I say that we should take statistics on the autism rate among unvaccinated children. Among the reactions are:
1. Nothing we say is going to convince you... At this point that is true. I will not be convinced that anything has been proven statistically when no data has been collected from the control group. This is fundamental statistics and I do not feel that it is unreasonable to require a sample of the unvaccinated population.
2. Leave science to the scientists, You know nothing, ... If you want to say that I do not know medicine, not a problem. I am an engineer, not a doctor. But I know what a control group is and I know what its purpose is. I know that it is fundamental in the statistical search for the truth. I know that the "scientists" have never taken a sample of the unvaccinated autism rate and published it. What puzzles me is why not. No, I am not a conspiracy nut. I believe in the addage "Never ascribe to malice what can be explained by ignorance or stupidity." Missing this fundamental piece in the thesis that says that there is no connection between autism and vaccines is for me - really stupid.
3. It would be unethical .... No. It would not be. There are many parents who refuse to vaccinate their children. There are whole groups who do not vaccinate their children. This is being done without any coersion. Coersion would be unethical. (Though there are some who believe that all children should be vaccinated and that there should be laws enforcing this. That, of course is coersion.) Samples of unvaccinate children can be gotten without coersion. If the unvaccinated children showed a lower autism rate, would publishing that information be unethical? I don't think so, but I would not be surprised to find people who think that way.
4. Mockery .... You really think I am stupid for wanting to know the autism rate among the control group, the unvaccinated population?
5. This was measured in the Japanese MMR study.... No it was not. The unvaccinated in the Japanese study were not vaccinated with the MMR. They were still vaccinated with other vaccines. That disqualifies that population from the control group.
6. It is way too hard.... I think it is too hard to get past the committees. It is hard to get the pro-vax community to take this simple step. It is hard to get the pro-vax community to see the obvious value of such a survey. It can be done and it is worth the effort.
7. It would be biased toward the poor, who can't get vaccines, who can't afford the wonders of modern medicine...... Since when is autism biased toward the very poor, or the very rich for that matter? The poor in this country are vaccinated. You can't exclude children from school because they can't afford the vaccines that are mandatory for participation for public schools and therefore there are programs everywhere to make sure it happens.
Hey you scientists, the ones I should leave this debate to, the ones who are smarter than I am, I am calling you. You understand - control group, science, they go together. Do you understand that the autism rates among the unvaccinated should have been collected at the beginning of the debate? Do you understand that control group measurements are scientific? Do you understand that any argument to the contrary is specious?
The statistics are out there if we would only look. The first place to look is before vaccines. Before the great vaccine push, the CDC was saying that the autism rate was 4/10000. Now it is 1/160. The correct inference from this is that there is a chronological relationship between autism and vaccines. Note that this is not a causal relationship. You can show a chronological relationship between autism and electronics. The inference that electronics causes autism can't be drawn either. But then there are the Somalis in Minnesota. When they came to the US they had no word for autism. They do now. This is a group that went from no vaccines to the US rate of vaccines and from no autism to the US rate of autism. It is hard to explain away but there are a lot of spokesmen for the pro-vax side who try.
Some would say that I should have faith in the medical community and the vaccination program. Our children are hurt by being wrong saying that vaccines cause autism when it does not or by saying that vaccines do not cause autism when it does. There is too much at stake. I will not back off from saying that the autism rate among the unvaccinated should be scientifically measured.
I am always amazed at the reaction among the pro-vax community when I say that we should take statistics on the autism rate among unvaccinated children. Among the reactions are:
1. Nothing we say is going to convince you... At this point that is true. I will not be convinced that anything has been proven statistically when no data has been collected from the control group. This is fundamental statistics and I do not feel that it is unreasonable to require a sample of the unvaccinated population.
2. Leave science to the scientists, You know nothing, ... If you want to say that I do not know medicine, not a problem. I am an engineer, not a doctor. But I know what a control group is and I know what its purpose is. I know that it is fundamental in the statistical search for the truth. I know that the "scientists" have never taken a sample of the unvaccinated autism rate and published it. What puzzles me is why not. No, I am not a conspiracy nut. I believe in the addage "Never ascribe to malice what can be explained by ignorance or stupidity." Missing this fundamental piece in the thesis that says that there is no connection between autism and vaccines is for me - really stupid.
3. It would be unethical .... No. It would not be. There are many parents who refuse to vaccinate their children. There are whole groups who do not vaccinate their children. This is being done without any coersion. Coersion would be unethical. (Though there are some who believe that all children should be vaccinated and that there should be laws enforcing this. That, of course is coersion.) Samples of unvaccinate children can be gotten without coersion. If the unvaccinated children showed a lower autism rate, would publishing that information be unethical? I don't think so, but I would not be surprised to find people who think that way.
4. Mockery .... You really think I am stupid for wanting to know the autism rate among the control group, the unvaccinated population?
5. This was measured in the Japanese MMR study.... No it was not. The unvaccinated in the Japanese study were not vaccinated with the MMR. They were still vaccinated with other vaccines. That disqualifies that population from the control group.
6. It is way too hard.... I think it is too hard to get past the committees. It is hard to get the pro-vax community to take this simple step. It is hard to get the pro-vax community to see the obvious value of such a survey. It can be done and it is worth the effort.
7. It would be biased toward the poor, who can't get vaccines, who can't afford the wonders of modern medicine...... Since when is autism biased toward the very poor, or the very rich for that matter? The poor in this country are vaccinated. You can't exclude children from school because they can't afford the vaccines that are mandatory for participation for public schools and therefore there are programs everywhere to make sure it happens.
Hey you scientists, the ones I should leave this debate to, the ones who are smarter than I am, I am calling you. You understand - control group, science, they go together. Do you understand that the autism rates among the unvaccinated should have been collected at the beginning of the debate? Do you understand that control group measurements are scientific? Do you understand that any argument to the contrary is specious?
The statistics are out there if we would only look. The first place to look is before vaccines. Before the great vaccine push, the CDC was saying that the autism rate was 4/10000. Now it is 1/160. The correct inference from this is that there is a chronological relationship between autism and vaccines. Note that this is not a causal relationship. You can show a chronological relationship between autism and electronics. The inference that electronics causes autism can't be drawn either. But then there are the Somalis in Minnesota. When they came to the US they had no word for autism. They do now. This is a group that went from no vaccines to the US rate of vaccines and from no autism to the US rate of autism. It is hard to explain away but there are a lot of spokesmen for the pro-vax side who try.
Some would say that I should have faith in the medical community and the vaccination program. Our children are hurt by being wrong saying that vaccines cause autism when it does not or by saying that vaccines do not cause autism when it does. There is too much at stake. I will not back off from saying that the autism rate among the unvaccinated should be scientifically measured.
Saturday, August 29, 2009
Evidence of a difference
The realization that autism had to advance medically was painful. David had participated in getting a law passed here in Colorado that defined autism as a medical condition. This effort might have been good for getting the insurance companies to participate in autism treatment, but it did nothing to get the medical community to see autism as anything more than another psychiatric condition. Medically, an autistic child was exactly the same as any other child. And then there were Dr Rosemary Waring and Dr Margaret Bauman.
Doctor Bauman performed autopsies on autistic brains.
Bauman, M.L. and Kemper, T.L. (1994) Neuroanatomic observations of the brain in autism, in The Neurobiology of Autism (Bauman, M.L. and Kemper, T.L., eds), pp. 119-145. Johns Hopkins University Press, Baltimore.
She found that there was an abnormality concerning the number of the purkinje cells in the brain. She also showed that the size of the amygdala was different. The amygdala was smaller in children like David and where the amygdala was enlarged that child was profoundly autistic. This was interesting. It was a start. It showed that there was something medically different between autistic children and other children. On the other hand, I had no clue what a purkinje cell was, what it did or why the size of the amygdala should be different in autistic children. Further, I could see no way to exploit that information in any way that might help David. Even saying as much as I have said now taxes my knowledge beyond any background I might claim.
And then there was Dr Rosemary Waring. When I first read about her, she was performing experiments with children and Tylenol (though they do not call it tylenol in England). Autistic children are statistical outliers in how long they take to process tylenol through the blood stream and out the kidneys. This led to the discovery of a lack of PST, phenol-sulfur-transferase, in autistic children. Perhaps that would explain why David took so long to get over the anesthesia stupor he suffered after the MRI.
It is another thing that is medically different among autistic children. This would seem like something that could be exploited to make autistic children better. Sadly, I have seen nothing in the autism medical bag that even acknowledges this difference. At the least, that fact that autistic children are statistical outliers in how long they take to process tylenol through the blood stream could be used as a medical marker to see if a child is autistic. They could use that or one of several aspects of this condition. Instead, medical science funds phrenology as a means for determining if a child is autistic and trumpets it as a triumph in Newsweek. http://www.newsweek.com/id/57987
But it was the discovery that there are low levels of glutatathione in autistic children that intrigued me the most. More on that in the next blog entry.
Doctor Bauman performed autopsies on autistic brains.
Bauman, M.L. and Kemper, T.L. (1994) Neuroanatomic observations of the brain in autism, in The Neurobiology of Autism (Bauman, M.L. and Kemper, T.L., eds), pp. 119-145. Johns Hopkins University Press, Baltimore.
She found that there was an abnormality concerning the number of the purkinje cells in the brain. She also showed that the size of the amygdala was different. The amygdala was smaller in children like David and where the amygdala was enlarged that child was profoundly autistic. This was interesting. It was a start. It showed that there was something medically different between autistic children and other children. On the other hand, I had no clue what a purkinje cell was, what it did or why the size of the amygdala should be different in autistic children. Further, I could see no way to exploit that information in any way that might help David. Even saying as much as I have said now taxes my knowledge beyond any background I might claim.
And then there was Dr Rosemary Waring. When I first read about her, she was performing experiments with children and Tylenol (though they do not call it tylenol in England). Autistic children are statistical outliers in how long they take to process tylenol through the blood stream and out the kidneys. This led to the discovery of a lack of PST, phenol-sulfur-transferase, in autistic children. Perhaps that would explain why David took so long to get over the anesthesia stupor he suffered after the MRI.
It is another thing that is medically different among autistic children. This would seem like something that could be exploited to make autistic children better. Sadly, I have seen nothing in the autism medical bag that even acknowledges this difference. At the least, that fact that autistic children are statistical outliers in how long they take to process tylenol through the blood stream could be used as a medical marker to see if a child is autistic. They could use that or one of several aspects of this condition. Instead, medical science funds phrenology as a means for determining if a child is autistic and trumpets it as a triumph in Newsweek. http://www.newsweek.com/id/57987
But it was the discovery that there are low levels of glutatathione in autistic children that intrigued me the most. More on that in the next blog entry.
Sunday, August 23, 2009
The Politics of Autism
Some of the mothers of autistics with whom David grew up work the politics of public care for our children. They have been doing so since David was diagnosed. Indeed, David was part of one of the bills they worked so hard to get passed. When David was young, they were fighting for health care coverage to handle the treatment issues associated with autism. They were fighting for respite care that would allow parents a break in the strenuous care that goes with many autistic children. They fought for inclusion and school services that would allow their children to be educated to the extent that they could be educated. Now they are fighting for the places for their adult children who are not capable of taking care of themselves.
You holocost deniers should take note of the sequence of events. First it was health care, inclusion and respite care. Now it is the halfway houses and other locations that can care for their children when they are gone. If the autistics were always there then the need that drove the politics would also have always been there. I say this tongue in cheek. Holocost deniers believe with blind faith. They ignore anything that incoveniently indicates that their faith might be wrong. You holocost deniers can ignore the sequence of events since you will do so anyway.
The individual states are cringing over the budget impacts that this is going to have, especially in the face of bad economic times and looming deficits. The impact of 380,000 autistic adults is expected to the 27 billion per year. See the Washington Post article. http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html?referrer=emailarticle
In that case, they are thinking that it will be $71,000 per year per adult autistic person on average. I hope that is all.
The logistics are going to be difficult. Finding a place for our children will be just as difficult as finding prison space. I did not choose that comparison lightly. There will be legal issues associated with housing adults who cannot take care of themselves and who cannot be legally held on any campus designed for their care. In our NIMBY culture, there will be people who do not want any such campus in their neighborhood. I don't know where we will get the people who can care for the adult autistic population. So many of the ones who could are caring for the next crop of autistic children.
The only way out of this is to find a cure, or more likely, a way to prevent autism. That requires medical research. And that is a field that is replete with politics.
You holocost deniers should take note of the sequence of events. First it was health care, inclusion and respite care. Now it is the halfway houses and other locations that can care for their children when they are gone. If the autistics were always there then the need that drove the politics would also have always been there. I say this tongue in cheek. Holocost deniers believe with blind faith. They ignore anything that incoveniently indicates that their faith might be wrong. You holocost deniers can ignore the sequence of events since you will do so anyway.
The individual states are cringing over the budget impacts that this is going to have, especially in the face of bad economic times and looming deficits. The impact of 380,000 autistic adults is expected to the 27 billion per year. See the Washington Post article. http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html?referrer=emailarticle
In that case, they are thinking that it will be $71,000 per year per adult autistic person on average. I hope that is all.
The logistics are going to be difficult. Finding a place for our children will be just as difficult as finding prison space. I did not choose that comparison lightly. There will be legal issues associated with housing adults who cannot take care of themselves and who cannot be legally held on any campus designed for their care. In our NIMBY culture, there will be people who do not want any such campus in their neighborhood. I don't know where we will get the people who can care for the adult autistic population. So many of the ones who could are caring for the next crop of autistic children.
The only way out of this is to find a cure, or more likely, a way to prevent autism. That requires medical research. And that is a field that is replete with politics.
Saturday, August 22, 2009
Autism has to advance medically if it is to move ahead
The period from second grade to fourth grade was one of stagnation. The rest of the class progressed from second grade in mentality, maturity and capability. David was left behind starting at a first grade level. David's gross motor and fine motor issues meant that he did not mature in the aspect of physical abilities. David could not keep up with the rest of the children on the playground either.
When I discussed this with my sister, Grace, I learned that children with disabilities often forget what they had previously learned. But when they do, they relearn with the same facility that they had learned it in the first place. That clearly was not David's case. Something had happened. There had been no blow to the head. The tests at Children's Hospital ruled out heavy metal poisoning. There was nothing to go on except the fact that David was and is autistic.
David stagnated. He could not focus well enough to read by himself. He could not do homework by himself. He still could not add past 5 without counting on his fingers. He could not multiply or divide. His prodigious ability to spell went away so that he was barely keeping up with the spelling lessons. No ABA methods, no speech therapy, no occupational therapy, no behavioral therapy could have put David back to where he had been in first grade.
The reader is free to disagree with me on this and that is fine. But during that painful period I reached one conclusion. David's loss had a medical reason and had to be treated medically. The problem was and is the same. Modern medicine has no clue what to do about autism. All they can do is to treat autistic children with the same drugs that they use to treat people with mental illnesses. Indeed, that is how doctors treat our autistic children if they treat them at all. The drugs that are used for the treatment of mental illness have major side effects. Some are addictive so that you cannot simply withdraw from the treatment. If you ask one of the doctors who administers these drugs just how the drug works you get "Well, we think it..." That gets us back to the bottom line. Modern medicine has no clue what autism is beyond what the symptoms are. There is no medical test for autism. It can only be diagnosed symptomatically. There is no medical treatment for autism. Autistic children are treated with the same medicines with which schizophrenics are treated.
One of the drugs that was prescribed for David was wellbutrin. If you go to http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=Wel1488.html&contentName=Wellbutrin&contentId=637 you will see several things. First is that they think that this works as a reuptake inhibitor for dopamine and norepinephrine. The second thing is that its effects are different on different people. The third is that it can be addictive. The fourth is that it can cause insomnia. You should know that David had sleep issues where he slept for about 4 hours a night. Fifth, it can cause tremors. David inherited tremors from me and he did not need anything adding to it. Sixth, it can cause seizures. That was one of the few autistic symptoms that David did not have. He needs a drug that can push him over that edge? I threw the wellbutrin away and we never went back.
I have seen the rants about quacks who give hyperbaric oxygen, chelation, B12, and other things. But even though doctors do not understand what wellbutrin does, even though it has some major side effects, even though it was clearly contraindicated for David the wellbutrin prescription was sanctioned medicine and therefore okay. In the field of autism, modern medicine is no better than the quacks. And for all of this, behavioral therapy has taken autism about as far as it can go. The next advance in autism has to be medical.
When I discussed this with my sister, Grace, I learned that children with disabilities often forget what they had previously learned. But when they do, they relearn with the same facility that they had learned it in the first place. That clearly was not David's case. Something had happened. There had been no blow to the head. The tests at Children's Hospital ruled out heavy metal poisoning. There was nothing to go on except the fact that David was and is autistic.
David stagnated. He could not focus well enough to read by himself. He could not do homework by himself. He still could not add past 5 without counting on his fingers. He could not multiply or divide. His prodigious ability to spell went away so that he was barely keeping up with the spelling lessons. No ABA methods, no speech therapy, no occupational therapy, no behavioral therapy could have put David back to where he had been in first grade.
The reader is free to disagree with me on this and that is fine. But during that painful period I reached one conclusion. David's loss had a medical reason and had to be treated medically. The problem was and is the same. Modern medicine has no clue what to do about autism. All they can do is to treat autistic children with the same drugs that they use to treat people with mental illnesses. Indeed, that is how doctors treat our autistic children if they treat them at all. The drugs that are used for the treatment of mental illness have major side effects. Some are addictive so that you cannot simply withdraw from the treatment. If you ask one of the doctors who administers these drugs just how the drug works you get "Well, we think it..." That gets us back to the bottom line. Modern medicine has no clue what autism is beyond what the symptoms are. There is no medical test for autism. It can only be diagnosed symptomatically. There is no medical treatment for autism. Autistic children are treated with the same medicines with which schizophrenics are treated.
One of the drugs that was prescribed for David was wellbutrin. If you go to http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=Wel1488.html&contentName=Wellbutrin&contentId=637 you will see several things. First is that they think that this works as a reuptake inhibitor for dopamine and norepinephrine. The second thing is that its effects are different on different people. The third is that it can be addictive. The fourth is that it can cause insomnia. You should know that David had sleep issues where he slept for about 4 hours a night. Fifth, it can cause tremors. David inherited tremors from me and he did not need anything adding to it. Sixth, it can cause seizures. That was one of the few autistic symptoms that David did not have. He needs a drug that can push him over that edge? I threw the wellbutrin away and we never went back.
I have seen the rants about quacks who give hyperbaric oxygen, chelation, B12, and other things. But even though doctors do not understand what wellbutrin does, even though it has some major side effects, even though it was clearly contraindicated for David the wellbutrin prescription was sanctioned medicine and therefore okay. In the field of autism, modern medicine is no better than the quacks. And for all of this, behavioral therapy has taken autism about as far as it can go. The next advance in autism has to be medical.
Saturday, August 1, 2009
What about God?
I don't count myself as a devout atheist. At the same time I don't have faith in any particular religion. It is true now and it was true then. But for a while, David saw God as the only means by which he could return to what was. For that he had me take him to a nearby church where he could learn about God and perhaps learn how he could have God give him back what he had lost.
The parishoners sequestered David with their children while they went to their individual worship. I stayed with David, sitting in the background and out of the way. David learned enough social skills that he could relate and play with the other children. In a reversal of roles, I sat by myself, not interacting with the others who were taking care of the children. I was the one who felt like I did not belong.
David had come to the church apparently so that he could get back what he had lost. Seeing that he was not getting what he was looking for, he lost interest and he stopped having me take him to the local church. As for me, I had looked to the schools, to medicine to see if I could return David's lost skills to him. I did not expect to find any solutions in church either. I was pretty depressed over it.
The parishoners sequestered David with their children while they went to their individual worship. I stayed with David, sitting in the background and out of the way. David learned enough social skills that he could relate and play with the other children. In a reversal of roles, I sat by myself, not interacting with the others who were taking care of the children. I was the one who felt like I did not belong.
David had come to the church apparently so that he could get back what he had lost. Seeing that he was not getting what he was looking for, he lost interest and he stopped having me take him to the local church. As for me, I had looked to the schools, to medicine to see if I could return David's lost skills to him. I did not expect to find any solutions in church either. I was pretty depressed over it.
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