Saturday, December 19, 2009

Autism's Trigger (Another Misnomer)

There are so many things out in the world about autism that are just plain wrong.  If autism is to gain any treatment inroads these wrong things have to be cleared away.  So let's start with something simple - the word trigger as it is used with respect to autism. 

The medical community likes to use the word trigger with the onset of autism.  The implication is that an event happened that innocently caused the autism onset, much like an icicle falling from a tree might trigger an avalanche.  The word is euphomistic and as such, it has magic.  It means that the onset of autism is a fluke of nature.  Whether it is an icicle falling or a man skiing in the wrong place, it was going to happen anyway.  Nothing is really to blame.  Nobody did anything to cause the child to be autistic.  It is a very safe word. 

The truth is that autism hits children like an incoming mortar round.  In some children, like my son, the damage is relatively mild.  (If you could ever call any case of autism mild)  In other children, they are disabled to the point where they can never care for themselves.  What I am implying is not politically correct.  I am implying that there is brain damage.  The word trigger implies a metamorphosis, like a pupae into a butterfly. 

Of course, I understand that there are genes that make it more likely that a child will develop autism.  For me that means that they are more likely to suffer the damage that causes autism.  And so I prefer the word stroke, even though the symptoms of a stroke are not the same as the symptoms of autism.  I prefer it because when the time comes and we understand how autism occurs, we can do something to prevent it. 

Sunday, December 6, 2009

The problem with autism research

How many studies have been done to prove that there is no link between autism and vaccines.  It has to be a lot.  All of them have been statistical.  All of them reach the conclusion that there is no link between autism and vaccines.  The truly amazing thing is that the first requirement for such a statistical study is a control group.  There has never been a published study that includes the one control group that is needed, the group of unvaccinated children.  This is symptomatic of a mindset which is:

    We know that there is no link between vaccines and autism.  Now let's prove it.

This mindset does two things, it listens to anything that supports the argument that there is no connection between autism and vaccines and it ignores anything that says that there might be a connection between autism and vaccines.  Because of that mindset, the following are given specious arguments:

    The lack of any control group (unvaccinated children) measurement
    The change in the rate of autism
    The numerous documented pre (normal) and post (autistic) vaccine cases

The lack of any control group measurement is a valid criticism.  I have heard that it is too hard.  It would not be ethical.  I have heard mockery.  I have heard that the Japanese MMR study had the control group (they only kept their control group free of the MMR vaccine (which only says that the unique ingredients of the MMR are not responsible for the autism rate).  All of the arguments I have heard for not doing a measurement of the control group are specious.

The change in the rate of autism is said to be because of a change in diagnostics.  I suppose that if you have nothing to fill the void that vaccines so naturally fills, this is just as good as any other explanation.  But I was there when the autism bow wave hit.  My son was at the front of it.  If you want to say that I am not qualified to make that judgement, okay.  Then perhaps you should accept the word of Michael Chez.  In his book, Autism and Its Medical Management, he recounts a meeting of Pediatric Neurologists where a question was asked.  "How many of you were treating autism 20 years ago."  You can guess the rest.  If the autism rate had been the same back then they would have known it.  Autism represents a big change to pediatric practice.  The argument that autism has always been around at the same rate that it exists today is specious.  The change in the autism rate is real.

Post hoc ergo propter hoc.  It is the identification of a logic error that says that just because two things happen one right after the other does not mean that one causes the other.  True.  But the pro-vax side takes this as proof that there is no relationship between autism and vaccines.  It is just as much of a mistake to conclude that it means that there is no relationship as to conclude that there is.  But when there are as many cases of autism following vaccination, post hoc ergo propter hoc sounds flippant.  The relationship between vaccines and autism deserves more than simply pointing out the logic error and calling it wrong (logically it is not wrong, it is inconclusive).  It deserves the measurement of the control group. 

In a previous post, Finally, a small break, I referenced the work of Dr Rosemary Waring that showed that the ability of autistics to process tylenol through the system was far less than the norm.  The mechanism for processing tylenol also handles a long list of other toxins for processing through the kidneys.  If this list includes any of the vaccine ingredients do you think that this thread would be pulled?  No, vaccines have to be protected. 

There have been numerous studies that show leakage across the blood gut barrier.  Does it not make sense that if something causes leakage across the blood gut barrier there may also be leakage across the blood brain barrier.  That possibility was pointed out by Andrew Wakefield.  When Andrew Wakefield dry lab'ed his data he lost any credibility and leakage across the blood gut and blood brain barriers became wrong.  Nobody can touch it any more whether he was right about leakage or not.

The problem with autism research is that it is not scientific.  It never has been.  It is political.  Our children will pay dearly for this.

Wednesday, November 25, 2009

Autism holocaust denial

For me, the denial that there is an autism epidemic is the medical equivalent of denial of the holocaust.  In the spirit of protecting the vaccine industry from any linkage to autism, the pro-vax side not only denies that vaccines may be linked to autism but denies that there even is an autism epidemic.  What a wonderful country.  If there is no autism epidemic then vaccines don't cause autism.  Case closed. March on with impugnity. 

But the denial is even more important than that.  The pro-vax side has no explanation for an autism epidemic.  They have no way to explain the countless number of children who have changed with the sickness brought on by the childhood vaccines from normal and healthy to autistic other than to say that it is a coincidence.  They have no way to explain why the autism rate which was so low when I grew up in the 60's to 1/160 now.  So, it has always been that way.  Problem solved. 

I have always kept this tidbit in the same place as the denial of the actual autism rate which the CDC did up until February 2007 when they finally admitted that the autism rate is not 1/2500.  My son was in elementary school from 1992 to 1998.  At the time in a school of 250 children there were 3 autistic children.  The odds agains that happening with the autism rate being 1/2500 are absurd.  If it were a statistical test, it would be well beyond significant.  (And I should blindly believe what the medical community tells me about vaccines and autism?) 

The denial has always fallen into that category.  I was thirty years old when I witnessed my first example of autism on sixty minutes.  Now if I want to find an autistic person besides my son, I simply look down the street.  Just as with the CDC's autism rate, simple observation belies the autism epidemic denier's claim.  Still, there are those who try to convince me that the autism rate has never changed.  They have always been there.  We have always had children change as toddlers from normal progress to autism. 

Now the University of California has come out with a study that shows that the autism epidemic is not a matter of diagnostics.  It is real.  But the autism epidemic deniers will attack it because it is so important that there is no link between autism and vaccines. 

This is what happens when you start with the conclusion and look only for the evidence to support it.

Sunday, November 15, 2009

Losing the ability to hold a pencil

At the end of fourth grade, David suffered another setback.  He lost the ability to hold a pencil.  Prior to this, and on his IEP, we insisted that David write in cursive script because he could.  His handwriting, while not beautiful, was legible. 

I cannot say how David felt about this since he was not verbal enough to express his dismay.  I was ready to cry.  I felt like what was David was being stripped away piece by piece by some unknown assailant.  While I held my tongue, inwardly I was seething.  I had nothing I could do about it.  There was no known cause.  I had nothing to go after.  I was ready to cry in dispair.

It is an interesting side note that David had had the Hepatitis B shot just prior to losing the ability to hold a pencil.  I did not know this until later when I examined his shot records.  I can only conclude that there is a temporal relationship between the Hep-B vaccine and David's loss of the ability to hold a pencil.  I cannot conclude that there is a causal relationship but contrary to what the medical community would have me believe, I cannot conclude that there is no relationship. 
On the one hand:
David had had shots before without any apparent side effects.
David had lost abilities before without any shots.
On the other hand:
The loss of ability to hold a pencil occurred within days of having the Hep-B shot.
The medical community has made a dog's dinner of their proof that there is no relationship between vaccines and autism by not taking any measure of the control group, i.e. the people who have never been vaccinated.

In desparation, I started giving David glutathione again.  I cannot say that the glutathione is what did it, but by the fall when David returned to fifth grade, David was able to hold a pencil again.  His ability to hold the pencil did not compare to what he was able to do before just as the return of his ability to add and subtract did not return to his previous level.  Nevertheless, I was grateful for any improvement. 

Would David have had any recovery without the glutathione?  I concede that this is possible, but I have to say that it is not likely.  Glutathione brought about another major change in David at the end of seventh grade.  The change was so profound that only a fool would ignore it.

Saturday, November 7, 2009

Finally, a small break

My hat is off to Dr Rosemary Waring.  She was the first I saw who identified something different about autistic children.  I am not saying that she was the first to do so, only that she was the first one whom I saw who showed that there really is something medically different about autistic children.  She showed that autistic children are statistical outliers when it comes to processing tylenol through the system.  It is this discovery and my desparation that led me to try glutathione. 

I was, and to a huge extent still am woefully ignorant when it comes to anything medical.  When I tried glutathione, I tried it with glutamine.  I had read that glutamine helped retarded children so I thought it might help David.  I also read that autistic children had low levels of glutathione.  My thought at the time was that the reason for slow processing of tylenol through the system was that autistic children have low levels of glutathione.  So I gave him glutathione at the same time.  This was done after researching the toxicity of each of these.  They are not toxic.  I figured that I did not really have a chance of any of this working, but I also knew that none of this would cause any harm. 

And yet David started to do arithmetic.  He was actually adding and subtracting numbers.  He was slow.  But slow is a huge jump from not able at all.   I will not even say that he was as far as he was in the first grade.  He wasn't.  At the time, I figured that it must be the glutamine.  After all, that was what was supposed to help retarded children.  I stopped giving David glutathione and continued with glutamine.  It was wonderful.  David did not stop adding and subtracting.  I was hopefult that the glutamine was doing something.  It was not much of a change.  David still needed constant supervision to do his homework.  David still needed ritalin to stay under control in class.  David still was no bright star in class.  He still had trouble associating with other children.  He was still my "W'appen boy".  But he could finally add and subtract.  What a change.

Before any reflexive detractors start, let me beat you to it.  It is entirely possible, maybe even likely that David would have started adding and subtracting without glutamine and glutathione.  Of course.  I was not convinced that anything I gave David did anything for him.  Now, though, I have reason to think that the glutathione might have helped.

Sunday, October 25, 2009

The decision to look for something more

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 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.

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.

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. 

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.
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 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.

Wednesday, July 22, 2009

Believing Religiously wrt Autism

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.

Friday, July 17, 2009


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.

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.


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.

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.

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.

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.

Saturday, February 21, 2009

Sometimes my children inspire me to write creatively

Sometimes my children inspire me to write creatively and only because there is so much truth in this fiction.

Every day I look forward to 4:00 when I get off work. It is not that I hate my work. Indeed, I enjoy the challenges of engineering. I like the math. I like to find solutions to a wide variety of problems. It is just that I look forward to coming home to my wife and my children. This was one day in particular that I was looking forward to. My daughter and I were in a three day marathon playing monopoly. It looked like after a long struggle I could finally drive her into bankruptcy. She had won the first three games and each time squealed gleefully as I mortgaged all of my properties. This was my turn and I was looking forward to it. I got home, opened the door and was greeted by a finger in the chest."You, this is all your fault!" my wife growled at me. When my wife is mad, she seems to forget things she has told me before. Clearly, my two sons had done something wrong. My wife needed to remind me that while my sons committed the crime, I, committed the original sin. It seems that my sons were playing dump truck with the sugar on new living room carpet. Somehow, the food coloring from my daughter's easy bake oven set got involved. Our blue carpet did not take well to the red dye #3. All of my attempts to clean the carpet only left a sticky crimson mess and moving the couch over it did not pacify my wife. The dump truck and the easy bake oven set were gifts from my sister in law, Mandy. My sister in law brings over different gifts to our children when the mood hits her. She never brings gifts on Christmas, or birthdays, or the fourth of July or Thanksgiving. She only brings them at times when they can do the most damage. First it was the legos that left the entire house mined for anyone who walks around in stockinged feet like I do. Next it was a sewing kit for my daughter, Lisa. You can put it together - a Saturday evening bridge game, a needle, a chair. I was the butt of that joke. Mandy had it in for me starting when Lisa was four. I had Lisa go to her aunt Mandy to tell a secret. When Mandy turned her head so that Lisa could whisper in her ear, Lisa blew in Mandy's ear. My pretense of innocence didn’t work. Mandy told me that I should teach my children better than that and she would see that I do. I wish I never found out what she meant by that. The stain on the carpet reminded me of Mandy's evil grin and that is what prompted me to cover it with the couch. Dinner was not a happy affair. My wife kept giving me the look. She never said anything more about the stain on the carpet, but she never said anything else. She just kept giving me that look that made me fear for my life. It was same look that the sisters of the Immaculate Conception School used to give me when they taught me Geography and English. My wife was taught in the Philadelphia public school system. I don't know where she learned that look. At the end of dinner, Lisa broke the silence and reminded me she had an orchestra recital that started at 7:00 pm. I could have kissed her. She risked her mother's wrath and she saved me! I am college educated and an engineer. I recognize a solution to a problem when I see it. With my three children, Lisa, Sean and David, I ran - straight to the car and off to her recital. Arriving at the school, David’s face was covered with purple ooze. Mandy had given him Fizzies. These are tablets that are added to water to make a carbonated drink. David had been eating them. I kept Kleenexes in the car just for such occasions. David resisted my attempts to clean his face. Neither of us was successful. His face was raw with all the rubbing I did with the Kleenexes. The purple stain on his face defied my most valiant efforts. I t was hopeless. The four of us headed for the school auditorium. Other parents would look at David’s purple face and smile at me. At school, you are not known as Mr. Ed Smith or Mrs. Nora Jones. You are the father of Lisa or the mother of Dennis. When your child breaks his arm, other parents will ask you “How’s the arm?” David’s face made mine purple. I thought of a paper bag in my car, but it would do no good. Putting a bag over his head would reflect on me too. At school, Lisa left us to join the school orchestra on the stage up front. Sean, David and I all moved into the auditorium. The three of us sat down and David let out a belch that rocked the auditorium. There must have been dynamite in that belch because it killed all conversation. The auditorium held more than 1000 people and was more than half full. All I could hear was the throbbing in my veins. The silence was unnerving. I wanted to scream, “I didn’t do it!” even though I knew that I was guilty by progeny and proximity. My only hope was that the reverberation from the walls would keep everyone from determining who actually did it. Act normal. Look straight ahead. Nobody will know. I heard Sean’s stage whisper, “Wow, Dave! That was cool. Can you do that again?”I grabbed Sean’s wrist, straining not to crush it. “Sean, I don’t want you to encourage him.” I whispered into his ear through gritted teeth. Sean only smiled at David, wisely saying nothing more. After an eternity of thirty seconds, the lights dimmed and the audience’s attention went up front to the orchestra. Now that the pressure was off, I thought about the Fizzies. Mandy had gotten me again.The orchestra had not even started playing yet David was restless. He stood up, letting the theater seat flip up. Then he sat on its edge so that it would flip back down with him on it. Satisfied that this would help assuage the boredom, David repeated that action. I reached for David’s wrist and asked him to settle down. That worked for all of 15 seconds. Sean, being the shining example for his younger brother, joined him in the frivolity. The lady behind them was getting annoyed and was giving me the look, the same look that the sisters of the Immaculate Conception School gave me, the same look that my wife gave me, the look that said, “Can’t you control your children?” For any of you ladies reading this, do you teach that look to your daughters? Do you make them practice that look in front of a mirror? Is this one of those secrets men are not supposed to know about? I want to know! There was no hope for it. I took Sean and David out of the auditorium and into the foyer at the auditorium entrance. With their newfound freedom, Sean and David were chasing each other and ululating like men on the warpath. It was not long before I could see that David was not enjoying the chase. Sean was teasing him. When Sean was chasing David by me I grabbed his arm. Sean’s momentum turned me around 180 degrees. I put my hands under Sean’s arms, picked him up, held him six inches from my face and growled. (Sean learned monster language at a very early age.) “Now repeat what I just said,” I whispered returning to English. “Don’t tease David,” he replied and before I could set him down again, Sean was off. The two of them ran back and forth bouncing between the walls with an energy that only children have. They were chasing each other and they were loud, but there was no blood. I could live with that. I held the auditorium door open just enough so that I could peer in and listen to the orchestra. An apparition came out of the darkened auditorium, opened the door and looked at me with the malevolence of hell on her face. Where do women learn this? This woman must have been 6 foot 4 inches tall because she towered over me. And she had the voice, the same one the sisters of the Immaculate Conception School used to call on me each time they knew I did not know the answer, the one that sounded like a circular saw cutting through plywood. “Your children are too loud. I can’t enjoy the orchestra.” I don’t know whether it was the height, the look or the voice, but I was intimidated and I was doomed to further exile, to the outer hall where I could no longer hear the orchestra. There was no help for it. I took Sean and David to the outer hall and waited for the show to finish. Outside in the hallway, the school had a glass trophy case. Sean and David put their hands and face to the glass to peer inside. Sean said, “Dad, can you open this?”It was bad enough that Sean could think of taking the trophies out of the case, but to ask me to participate, that crossed the line. “Sean, do you see the glass? Do you see the lock? That says that the school wants you to look but not touch,” I growled. They could not handle the trophies and that ended their interest. Off they ran. There is something about the hands of young boys. They ooze greasy dirt. Both boys left their paw marks on the case. I went to the men’s room to get paper towels to clean up the mess. While I was wiping the case clean, I felt a cold stare on my back. When I turned around, a diminutive woman stood there with her hands on her hips. “If you kept their hands clean you wouldn’t have to do this.” There was that voice again, the one that makes a tiny woman look six feet tall. She had the look too. I turned around and continued to wipe the glass clean even though I felt like I was turning my back to a firing squad. My hand trembled as I finished the job. When I turned around again, she was gone. When I was in Immaculate Conception School, I was taught that purgatory is a place where we contemplate our sins waiting for heaven. That is how I felt. I was pondering my two sins and the wait was interminable. Sean and David did all of the running and by the time people were exiting the auditorium, I was exhausted. Lisa came out and I was delighted to see her. Her arrival marked the time when I could go back home. Lisa and I walked back to the car while Sean and David raced ahead. I was putting Lisa’s violin in the back when she opened the car door and challenged, “Alright, which one of you two did it? Which one of you burped?”“David did it,” Sean replied tersely.I knew that she heard it. Everybody heard it. But, “You could tell that he did it from up there?” I whimpered.“I couldn’t tell which one did it but I knew one of them did.” She answered.I was appalled. I did not want to be the father of the burp. I drove slowly home contemplating my sins.

In this story, it is true that I took my children to my daughter's orchestra recital. It is also true that my two sons were so rambunctious that I had to take them out to the foyer and then to the outside hall. It is also true that David belched loud enough to stop the conversation in the auditorium. What is astonishing is that my daughter did know that one of the two of them did it. The rest is embellishment.

Saturday, February 14, 2009

The charmer

There was a bill being introduced to the Health, Education, Welfare and Insurance committee in our state. The bill would define autism as a medical condition under state law. Heretofore, it had been defined as a psychiatric illness. The insurance companies were strongly opposed to it as it was viewed as a bill through which mandatory coverage of autism would be introduced. To be sure that was part of the issue, but it was not all. As long as autism is seen as a psychiatric illness, it will be seen as incurable. Also, all autistics would carry a stigma that, as adults would bar them from any position that would not allow anyone who suffered a psychiatric illness to hold.

I was asked to testify to the committee and since David was known in the autistic community for his ebulience, I was asked to bring David. David's first grade teacher, the same one he had for kindergarten thought it would be a good idea. David and I arrived to a heated atmosphere. One of the mothers had just finished testifying about how she had to quit her job so that she could qualify for medicade and get the state's help to pay for her daughter's treatment. That was not well received by the members of the HEWI committee. Before that there was acrimony and bickering between the autism community and the insurance companies. It was not going well at all.

Finally it came our turn to testify. David sat in my lap as I set myself in front of the microphone to begin answering the committee's questions. As I was beginning to answer the first question, David stood up in my lap and started to tap on the microphone.

"David play da microphone? Yes, David play da microphone. One, two, fi, four, five, five, four, fi, two, one. He continued blowing in the microphone while I continued trying to answer the HEWI committee's questions. The HEWI committee got a real kick out of him. Finally, I put David in the chair next to me and asked him to sit quietly while I finished answering the committee's questions. All the while I finished answering the questions David continued to smile up at the committee. I did all the talking, but I was completely upstaged by David. It was a good thing too. David's smile and his antics turned the atmosphere in the committee around. It was like a secret weapon. The bill soared through the committee and passed through the senate and the house. David's name was in the paper the next day with appropriate credit given to him for providing the testimony that got the bill through.

Several weeks later the bill was being signed by our governor. The signing was scheduled for 10:00 and it was after 11:00 when the governor finally arrived in his office for the signing. All that time, I had to carry David on my shoulders or in my arms even though he was six years old. This was necessary because otherwise David would be off at my first inattentive second. Then I would be searching all over the capital building for him. By the time the governor arrived in his office my arms were like rubber. My family is afflicted with a condition known as familial tremors. It is a shakiness of the hands that is passed from father to son and to a lesser extent to daughters. I have it. My father had it and David has it as well. It gets worse with stress and the stress of keeping David in place in my arms for over an hour was quite a stress. When I finally shook the governor's hand, it was like grabbing a jack hammer for the governor. He quickly withdrew and was staring at his hand. I made a quick exit with David. I wish I had David's charm. Perhaps I could have handled it better.

Wednesday, February 11, 2009

Autistic communication

David had very poor expressive language and very good receptive language. He followed instructions. He would attend without putting his eyes on you. Yet at times I had to wonder what went on in his head. At the Day Treatment Center in Denver a number of different ways of expression were tried including sign language. And David learned single words that would make expressing himself easier.

One day my wife and I finished bathing him. Yvette toweled David off and we were getting his pajamas for him when he said,

"Mom, I want bean."

Neither she nor I were sure that we heard him right. "What do you want Dave?" I asked.

"I want bean."

Yvette and I looked at each other. Neither of us could figure what David wanted so I asked again. "You want bean?"

"Yeah," David said.

I was trying to get David to talk in complete sentences. "You want bean."

"I want bean," David repeated.

"Dave, what is bean?"

"I want bean," he repeated as if everybody knows what bean is.

I won't belabor this blog entry with the conversation that went back and forth frustrating all of us. It continued longer than I care to recount. Finally, I saw on the towel - L.L.Bean,

"You want the towel, Dave?" I asked tentatively.

"Yeah, I want bean," he replied.

I didn't know what to make of it. He was four years old. I didn't know he could read the word bean. It turned out that he could read that and a lot of other words as well. At the same time he could not ask for a towel. It was a strange experience, but this is how autistic conversation goes sometimes.

Monday, February 9, 2009

Some times there is no good choice. You just have to be lucky.

I remember David's first fight. It was just after his first birthday and long before his autism symptoms manifest to the point where we could get a diagnosis. His older brother, Sean, had been picking on him. Sean had been all over him like a damp blanket. David had been quietly and patiently waiting for Sean to stop or for my intervention. I wanted this to play out because if I intervened then David would never learn to stand up to Sean or anyone else without someone standing in for him. Finally, Sean got bored with picking on David and let him go. When Sean let him go, David jumped on his back and planted his single, newly cut tooth into Sean's back. I stepped in and would not allow Sean to retaliate.

Fast forward to when David was four. Again David was mad at his brother.

"Hit." David was expressing in a single word what he wanted to do to his brother.

"No Dave. I can't let you hit him." I told him.

"I want to bite." Hitting is not an option so biting is?

"No David. I can't let you bite him either. " I took David away from Sean and had him doing something else.

This scene played out a number of times. David was autistic and I had to teach him not to be violent even in the face of someone picking on him. I could see instinctively that David needed to socialize. Violence on his part could easily shut him off from other children and from the socialization he desparately needed even if the person he clobbered deserved it. So I taught David not to be violent under any circumstances. It isn't right, but any violence on David's part would likely be attributed to his being autistic and not to anything the other party might have done. This is especially true since David was unable to speak for himself.

Fortunately, this was not terribly hard. David has never been prone to be violent. Still, it meant that David would be vulnerable to anyone who wanted to pick on him. But I was lucky. David was popular enough that he was rarely picked on.

Saturday, February 7, 2009

A statement of the obvious

I was reading another autism blog put out by Storkdok titled Peers are key for autistic kids, researcher says. This seems so obvious now, but sixteen years ago when David was starting kindergarten, I had to stumble across it like it was a tree root in the dark.

My son, David, is easygoing. He seldom complains. He is not moody. He is takes instructions well. Yet as I mentioned in a previous posting, Starting Early Intervention, David did not do well when he was put into a new situation with new people without being introduced to it first. For me that meant that I had to take off from work, bring David to school and introduce him to the class. I still find it difficult to explain to adults what autism means and how it affects David. I dreaded trying to explain it to the 5 year olds in David’s kindergarten class. It made me want to find a black hole to hide in. Yet it had to be done - lucky me.

I called David’s kindergarten teacher and explained why I wanted to take David into kindergarten and introduce him to the situation. She took it a step further and suggested that I introduce him to the class. My daughter, Lisa and my son, Sean lived with David. They understood who he was and what was different about him. None of the children in the kindergarten class would understand any of this. I had often failed to find the words to tell adults anything about David. I had no inkling about what to tell these children. Yet it made sense. These children needed a level of understanding about David and I was the best candidate for the job. I hung up the phone wishing I was more talented – talented enough that talking in front of the kindergarten class was easy or talented enough that I could have talked my way out of it. Fortunately, I was not talented enough to talk my way out of it and I was not talented enough to even try to explain more than what five year olds were ready to understand.
On David’s first day of kindergarten, I took him by the hand and led him to his class. I stood with his kindergarten teacher while the rest of the class wandered in. When the bell rang, his teacher introduced David and then introduced me to explain about having an autistic boy as a classmate. The class gathered around in a semicircle and I sat on the floor with David in my lap. I introduced David as my son and asked if any of them had ever heard of autism. There were blank stares all around. (Sixteen years ago autism was almost unheard of. Now everyone knows somebody with autism.) I explained to them that David could talk, but not easily. David sometimes liked to hum, but it is easy to get him to do something else. David would try to be by himself, but they could still be his friend. I did my best to keep it simple. This was a good choice since I have often found myself overwhelming others in my discussions about autism. The children responded well with questions that showed that they were interested.

I was finally done and David raises his hand, pointing his index finger in the air and exclaims, “Superbaby!” It was incongruous and it surprised everyone.

One of the girls in the class laughed and said, “You’re funny.”

I was dismayed at the time, but looking back it was just what was needed. At that moment David was accepted by his peers and class went well for David during his kindergarten year. David was assigned a friend. He got to be very close to this boy. When this boy was sick one day, David was despondent. Afterward, each of the children was cycled in and out of that role once a week. This kept David from being dependent on a single person in the class.

David learned a lot about socialization from his classmates and they learned from him about what it is to be autistic. Now it seems obvious. I cannot see children learning about how to socialize with other children if there are no other children around for them to socialize with. Why would autistic children be any different? The title of the referenced article is a correct as it is obvious. Peers are key for autistic kids, researcher says.

Sunday, February 1, 2009

The wanderer

While David willingly went with us wherever we took him, he liked to wander off by himself. That started at a very young age. Even when he could not talk, he saw his older sister, Lisa, and his older brother, Sean, going to school and even though he could never say it he decided that he had to go too. Naturally, since he could not tell anyone where he was going, he just went. For those of you who would admonish me that we should have locked the door, thrown a high chain lock, kept him fenced in in the back yard, okay. We did all that. David had no trouble with any of it. He just left when he wanted to, without a word or any signal that he was leaving. School called. Yvette had to go get him. That was the beginning.

The number of times when David would simply leave only increased after that. He decided that he needed to explore the neighborhood. He made friends with every dog, cat and ferret that was allowed outside the house. I found out where each one of them was because I would find David playing with them when I went after him. At other times I found him at the neighborhood playgrounds. His wanderings got to be more predictable so that when he did wander off, Yvette and I were able to round him up rather quickly, usually 10 to 15 minutes. Still, I cannot count the number of times he managed to escape.

One time we were surprised. I was tutoring my nephew in calculus. Yvette was upstairs getting sick with the stomach flu. The phone rang and I picked up.

"This is the county sheriff's department. Do you know where your son is?"

I replied, "Obviously, you know. Would you like to tell me where he is so I can pick him up?"

He was down the street about 1/2 mile. He had ridden his green tricycle over there. I got there a few minutes later. One of the ladies there wanted to give me a piece of her mind.

"How can you let him wander off like that?"

I shrugged and said, "You obviously do not know my son." I took David home, followed by the sheriff.

I explained to him that David is autistic and therefore if he gets it in his mind to leave he could not tell us because he could not talk. David's solution to this problem is to simply go when he feels the need. The sheriff had not heard of autism. This is one of the many memories that contradict the idea that autism has always been here. We are just now getting around to being able to diagnose it.

I also explained that this was one of many times when David took it in his head to take off without telling anyone. However, if he had any suggestion how I could keep David from taking off like that I would be willing to act on anything he could come up with (GPS collars did not exist then). He could offer nothing more than be more careful next time.

But then came the social worker. She was young and inexperienced. Her idea was that maybe David should go to a foster home. I had to disabuse her of that idea.

"Do you know what it is like to have an autistic child?
Do you know how rigid they can be?
Do you know the kind of fits they can throw if they are taken into a strange situation?
Have you ever had to deal with any of the problems that come with an autistic child?
Are you sure that this would be in David's best interest?"

She backed off. "I was merely suggesting that it might be a possibility. "

My eyebrows raised, but I bit off the retort that was forming.

That need to keep David in range was a dominant theme when he was young.

Saturday, January 24, 2009

David's first words (beyond echolalia)

One of my favorite things to recount about David is the first time David said something beyond echolalia.

To understand this the reader needs some background. David did not sleep like the rest of us do. When he just turned four years old he was only sleeping 4 hours a night. This was hard on me, but David did not seem to mind. He functioned just fine on 4 hours a night. I would wake up at night hearing a noise downstairs. When I came down, there was David playing in front of the aquarium which was the only light on downstairs. Sometimes David would make a refrigerator raid when he came downstairs. I would know because the refrigerator door was propped open by the bar stool. A gallon of milk was on the floor along with a glass from the cupboard. Milk was puddled around the glass and the glass was half full. I took to staying with David in his room while he fell asleep. Only he did not fall asleep. I did. At one AM I would wake up still holding David next to me and he would be wide awake! When I fell asleep with David in his bed it was painful. My back would be parked in a bad position and I would wake with spasms. At that point I would ask David to stay in his bed and I would go back to my own bed. Sometimes it worked and sometimes it did not.

One summer day I came home from work and found David asleep on the sofa. I was upset.
"Yvette, you let him sleep when you know how little he sleeps at night?" I asked.

My wife was having none of it. "Have you ever tried to wake him when he is napping? He wakes cranky and it very hard to deal with." she replied.

That was true. David is a handful when awaken from a nap. I had done it before. I gathered Lisa and Sean and carried David to the car and strapped him in. We were going to the library and I was going to use the motion of the car to wake him up slowly. When I got to the library I carried David on my shoulders. I could not let go of him because he would run off and I would have a hard time chasing him down even with Lisa and Sean helping me. He liked to be carried on my shoulders and it was a nice compromise that kept me from panicking.

When I got inside the library I suddenly realized that David had been asleep for quite a while and while he was potty trained an accident was still possible, especially when he was waking up ... and on my shoulders... and still groggy... and

"Dave, do you need to pee?" I whimpered. Don't get me wrong. I have changed diapers for all of my children. I have cleaned up every kind of mess they have gotten into. But the thought of having the yellow river flowing down my back made me cringe.

"I nee go baf'oom." He said. My ears were incredulous. My chain flew off its sprockets.

"Wow, David. Yeah!" I had lost it. People must have been looking at me but I did not notice, though Lisa did.

"Dad, this is a library!" she whispered while tugging on my sleeve.

"It sure is!" I exclaimed and I walked swiftly out to where the bathroom was.

When I was taking David to go, I heard a knock on the door. It was Lisa.

"Dad, they can still hear you out here." she stage whispered.

"Okay, Lisa." I said. When David was done we all made a quick exit.

We built on that day and now David while taciturn is capable of being articulate.

Friday, January 23, 2009

Oh those ears

We had taken David to the local Fourth of July fireworks display when he was three years old. With the first boom David was in agony. I could see it immediately. I told Yvette, Lisa, David's older sister, and Sean, David's older brother that I had to get David back to the car. I ran with David back to the car with everyone else running behind me. While I ran, I covered David's ears with my hands. It was clear. Watching fireworks was fun, but not for David.

The next year Yvette and I decided that David could not come with me when I took Lisa and Sean to watch fireworks. David was livid and he called me at work. I was not there, but David kept calling me. Finally one of my coworkers had stopped by the office and decided that if the phone was ringing so long it might be an emergency. He picked up the phone.

"Where's my Dad?" David cried. David had just started talking and the situation seemed to bring out his very best effort.

Tom was calm. He asked, "Is your dad, Ed?"

"Yeah!" David cried out. "He is supposed to take me to fireworks!"

"This is where he works and he is not here." Tom told David. "But I will tell him when I see him"

"Yeah!" David yelled and he hung up.

I was in trouble when I got home and even though it was late, I took David for a walk with me. I am not sure whether it was David or guilt that made me do it, but even though I reminded him of how much he hurt when he saw the fireworks last time, I wound up promising to take him the next time.

And I did. The next year when I took my three children to see fireworks, I proposed to them that we watch the fireworks from a Dairy Queen store. It was far enough away that it did not hurt David and being at Dairy Queen meant that we could have ice cream while watching the fireworks. It was a compromise that we all were happy with.

Later, I took David to the Children's Hospital here in Denver where his hearing was checked. David's hearing was incredible. He was hearing words 20 dB below the level that the average person could hear them. There were tones where he was hearing below -10 dBA. I had never heard of such a thing. Clearly David's hearing was and still is really acute. I remember walking into a restaurant where David said that the television, which was muted, was ringing. I walked up close to the television and two feet away, I could hear it too, barely. My wife could not hear it at all. Oh those ears.

Retarded? Hardly

It was early summer. David was 4 years old. He could not talk except as echolalia. Echolalia is an autistic form of speech. It involves repeating a single word of a question that is asked of him. For example, I would ask David if he wanted some milk. David would reply, "Milk." He could also sign a few words. So if I asked him if he wanted some more cereal, he would sign "more." I am not sure if even the signing was not a form of echolalia because I never saw him sign more than one word at a time and only if the word was said by the person talking to him. Because David could not talk, it was difficult to tell what intelligence David did or did not have.

One Sunday afternoon, our telephone went out. I went out the the telephone box which was on the side of the house at the back. David was on his rocking horse rocking back and forth. I opened the box, unplugged the house and plugged in one of our phones to see if the problem was in our house or in the network. It was in the network. I plugged the house back in, screwed the box shut and went to a neighbor's house to call the phone company to report the outage.

On Monday afternoon, I got a phone call at work. I heard a mumble that sounded like R2D2 would have sounded if he had a tongue. It was David!

"Dave? Did Mom call for you? Is she nearby? Can you put her on?"

David continued to mumble. Suddenly I hear my wife, Yvette's voice on the phone.

"Do you know where he is calling from? He is calling from the box at the back of the house," she said.

"David called me?!" I asked in surprise.

"He called you. He brought a phone down from upstairs and plugged in into the phone box outside." she replied.

"David dialed the phone?" I needed this clarified.

"Yes, he knows your work phone number. I did not call you." Yvette said.

I was speechless. David was almost four. He could not talk, and yet he knew my phone number at work. It made no sense. David's pediatrician told us that most autistic children were retarded. I knew he had to be wrong. At least he was in David's case.

Sunday, January 18, 2009

Potty Training

I came home one day to my wife, Yvette. She did not look happy. She said, "I can't get him potty trained. You try. I saw autistic kids who were 4 and 5 years old who had still not been potty trained. I had no idea how David would do. He was three years old and a bit long in the tooth for diapers. I had no idea how to handle it and since we were considering taking David out of Developmental Pathways and into the Day Treatment Center, I went to see the woman who ran the center at the time. It was a rather lengthy consultation during which David messed his pants. That allowed me to bring up the issue of potty training with her. In her treatment center, I remember very few autistic kids who were potty trained. She was skeptical about David being able to train. Nevertheless, I pressed her on it. I do not remember many of the details of it. But she instructed me on the method.

That weekend I took David to potty train. We worked on it for quite a while. It was not working and I needed to go. So I picked David up and let him stand there while I went. After that, David was not so hard to get to go like the rest of us. I am not sure whether it was the method I was taught or the modeling. I suspect it was the modeling. When I brought David to the Day Treatment Center he became the model for other kids to learn to use the toilet.

Clearly, my son is a visual learner. I suspect that my modeling it for him was at least part of the reason he learned how to go by himself. I figure he just did not want me to show him any more. Fortunately, he does not remember any of that. David was autistic before this, so any trauma suffered was not the reason for his autism.

Saturday, January 17, 2009

Starting Early Intervention

The new buzzword around treatment of autism was early intervention. I had no idea what that entailed but I was willing to try it. At the time, there were two places where any kind of intervention would be available in Denver, Developmental Pathways and the Day Treatment Center. We started with Developmental Pathways.

In the early morning before work it fell to me to take David to a bus where I would strap him in for his ride to the school where Developmental Pathways held its sessions. I took David out of the car and brought him by the hand to the bus where I strapped him into the seat. Then I ruffled his hair and told him that I would see him in the evening. David was wonderful. He did not cry. He did not complain. He simply looked out the window as the bus drove away. For someone who is autistic, David took this change to the routine in stride. I was really proud of him. It fell to my wife to pick him up when the bus came back. We both agreed that David handled the new situation wonderfully well. It was a good start.

And then.... I got a call from Developmental Pathways two weeks later. David simply was not thriving. He did not participate and he did not seem to like being there. Wow. This was completely different from my observations of him in the morning. I took off work and Yvette and I took David in to see the program administrator.

I sat there with David in my lap as the program administrator explained what was going on. David simply was not happy being there in the classroom. One of the teachers would sometimes take him out for a walk and he would feel better for a while, but it was not working for him. While we were talking, David decided to go over and play with some of the toys. That was more than he had been doing before.

After the discussion, David took up a piece of chalk. He was drawing spirals on the chalkboard. I walked over and showed him a square asking if he could draw that. David walked away. One of the teachers explained that I had to follow him for a while and then strike out on my own doing the squares. Then if David was ready he would follow me. By the end of the afternoon, all of us saw that David was at home in the classroom with the teachers. It seemed that if David was going to go into a new situation like that without Yvette or me, he would need to be introduced to the situation. It was a lesson that I would not forget.

Friday, January 16, 2009

Why would I question medical statistics related to autism?

I am Ed and the father of David who is autistic. I am an engineer by trade and as an engineer I have had a number of occasions to work with statistics. Many times I have heard medical research expound on statistical measurements and what they mean. While I seldom dig into the methods used to collect the statistics, I have looked at the inferences that were drawn and if there is a weakness in medical research, it is in the conclusions that the researchers draw from their data.

The first statistic that the medical community swore to was that the number of autistics in the general population is 1/2500. My son attended an elementary school with approximately 250 children in it. The odds of the school having no autistic children is about 90.48%. That would make my son part of the 9.52% of schools that had one or more autistic children at the time. No big deal. Then a second autistic child came to the school. That would make the school part of the 0.47% of schools that size that have 2 or more autistic children. Then a third child joined my son's school. That made my son's school one of the 0.015% of schools that size with 3 or more autistic children at the time. Had my son's school been a statistical experiment, the inference would have been virtually conclusive. The 1/2500 statistic had to be wrong. Add to that the autistic girl just up the road whose parents did not send her to the local school and the 1/2500 statistic became absurd. Yet all the way through February 2007 the CDC maintained that the autism rate was 1/2500.

This next paragraph is not a comment on whether or not thimerosal is related to the autism rate. It is a comment on the inferences that the medical community makes with their statistics.

When the Danish study was done the medical community waved it around. The autism rate in the study went up as thimerosal was taken out of the Danish vaccines. The conclusion was that thimerosal and the autism rate are not related. That is not the way it works. The measurement being done was to determine whether there is a relationship between autism and thimerosal. Logically you can infer one of two things. Either a little thimerosal prevents autism or the experiment got contaminated by another variable. The second one was true which made the study invalid. The study had been through peer review. The study was trumpeted by the medical experts as proof that autism and thimerosal were not related. The study was not valid. Invalid means that after the study was done, we do not know whether there is a relationship. The medical community made a mistake in logic to conclude that there is no relationship based on the Danish study. Invalid does not say that there is a relationship.

If you want a more modern one just take a look at the Syracuse University study where thimerosal levels were taken after vaccine injection. The thimerosal disappeared from the blood stream after three days. The conclusion made by the study was that the body got rid of the thimerosal and therefore thimerosal is safe as a preservative. What an inference for a potent neurotoxin. What an inference for a cumulative poison. What a leap of faith. The right conclusion is that the blood levels dropped after three days. There is nothing that can be concluded about what happened to it. But the Syracuse University study supports the idea that autism and vaccines are not related. Wrong or not it passed peer review and got plenty of press,

The proper experiment to determine if there is a relationship between autism and vaccines involves comparison of the vaccinated population against the unvaccinated population. I have been handed MMR studies comparing those who had and those who had not received the MMR vaccine and told that the MMR studies are proof that there is no relationship between vaccines and autism. It is an inference that is not valid.

When I suggest that the study needed is one that compares the vaccinated population against the unvaccinated population, the reactions are not favorable. I do not understand this. When I look for the autism rate of the vaccinated population I know that since 98% of the population is vaccinated the autism rate of the general population is about that of the vaccinated population, that is, 1/160. This works as long as the autism rate for the vaccinated is equal to the autism rate of the unvaccinated. Since this is what the medical community has been advertising, I can't see them objecting to that assumption. I only have one known and valid measurement for the unvaccinated population. That is the time before vaccines when the autism rate is 1/2500. From that I have to make one of two conclusions. Either vaccines made the autism rate rise or there is another factor that occurred concurrently. If I were in the medical community, I would be rushing to measure the autism rate among the unvaccinated population. If I am in the medical community then I know that there is no relationship between autism and vaccines and I would want to conclusively prove it. An autism rate of 1/160 among the unvaccinated population would conclusively show that there is no relationship between autism and vaccines.

Why would I question medical statistics related to autism? The medical community is willing to accept any study that says autism and vaccines are not related whether the study is valid or not. The medical community will not do the experiment that is a valid measurement to determine if there is a relationship.