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.

Autism has to advance medically if it is to move ahead

The period from second grade to fourth grade was one of stagnation. The rest of the class progressed from second grade in mentality, maturity and capability. David was left behind starting at a first grade level. David's gross motor and fine motor issues meant that he did not mature in the aspect of physical abilities. David could not keep up with the rest of the children on the playground either.

When I discussed this with my sister, Grace, I learned that children with disabilities often forget what they had previously learned. But when they do, they relearn with the same facility that they had learned it in the first place. That clearly was not David's case. Something had happened. There had been no blow to the head. The tests at Children's Hospital ruled out heavy metal poisoning. There was nothing to go on except the fact that David was and is autistic.

David stagnated. He could not focus well enough to read by himself. He could not do homework by himself. He still could not add past 5 without counting on his fingers. He could not multiply or divide. His prodigious ability to spell went away so that he was barely keeping up with the spelling lessons. No ABA methods, no speech therapy, no occupational therapy, no behavioral therapy could have put David back to where he had been in first grade.

The reader is free to disagree with me on this and that is fine. But during that painful period I reached one conclusion. David's loss had a medical reason and had to be treated medically. The problem was and is the same. Modern medicine has no clue what to do about autism. All they can do is to treat autistic children with the same drugs that they use to treat people with mental illnesses. Indeed, that is how doctors treat our autistic children if they treat them at all. The drugs that are used for the treatment of mental illness have major side effects. Some are addictive so that you cannot simply withdraw from the treatment. If you ask one of the doctors who administers these drugs just how the drug works you get "Well, we think it..." That gets us back to the bottom line. Modern medicine has no clue what autism is beyond what the symptoms are. There is no medical test for autism. It can only be diagnosed symptomatically. There is no medical treatment for autism. Autistic children are treated with the same medicines with which schizophrenics are treated.

One of the drugs that was prescribed for David was wellbutrin. If you go to http://www.pdrhealth.com/drugs/rx/rx-mono.aspx?contentFileName=Wel1488.html&contentName=Wellbutrin&contentId=637 you will see several things. First is that they think that this works as a reuptake inhibitor for dopamine and norepinephrine. The second thing is that its effects are different on different people. The third is that it can be addictive. The fourth is that it can cause insomnia. You should know that David had sleep issues where he slept for about 4 hours a night. Fifth, it can cause tremors. David inherited tremors from me and he did not need anything adding to it. Sixth, it can cause seizures. That was one of the few autistic symptoms that David did not have. He needs a drug that can push him over that edge? I threw the wellbutrin away and we never went back.

I have seen the rants about quacks who give hyperbaric oxygen, chelation, B12, and other things. But even though doctors do not understand what wellbutrin does, even though it has some major side effects, even though it was clearly contraindicated for David the wellbutrin prescription was sanctioned medicine and therefore okay. In the field of autism, modern medicine is no better than the quacks. And for all of this, behavioral therapy has taken autism about as far as it can go. The next advance in autism has to be medical.