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.