The Politics of Autism

Some of the mothers of autistics with whom David grew up work the politics of public care for our children. They have been doing so since David was diagnosed. Indeed, David was part of one of the bills they worked so hard to get passed. When David was young, they were fighting for health care coverage to handle the treatment issues associated with autism. They were fighting for respite care that would allow parents a break in the strenuous care that goes with many autistic children. They fought for inclusion and school services that would allow their children to be educated to the extent that they could be educated. Now they are fighting for the places for their adult children who are not capable of taking care of themselves.

You holocost deniers should take note of the sequence of events. First it was health care, inclusion and respite care. Now it is the halfway houses and other locations that can care for their children when they are gone. If the autistics were always there then the need that drove the politics would also have always been there. I say this tongue in cheek. Holocost deniers believe with blind faith. They ignore anything that incoveniently indicates that their faith might be wrong. You holocost deniers can ignore the sequence of events since you will do so anyway.

The individual states are cringing over the budget impacts that this is going to have, especially in the face of bad economic times and looming deficits. The impact of 380,000 autistic adults is expected to the 27 billion per year. See the Washington Post article. http://www.washingtonpost.com/wp-dyn/content/article/2009/04/03/AR2009040303169.html?referrer=emailarticle
In that case, they are thinking that it will be $71,000 per year per adult autistic person on average. I hope that is all.

The logistics are going to be difficult. Finding a place for our children will be just as difficult as finding prison space. I did not choose that comparison lightly. There will be legal issues associated with housing adults who cannot take care of themselves and who cannot be legally held on any campus designed for their care. In our NIMBY culture, there will be people who do not want any such campus in their neighborhood. I don't know where we will get the people who can care for the adult autistic population. So many of the ones who could are caring for the next crop of autistic children.

The only way out of this is to find a cure, or more likely, a way to prevent autism. That requires medical research. And that is a field that is replete with politics.

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.

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.

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.

The MRI

Two questions were: What happened? What can be done about it. I had never heard about anyone, autistic or otherwise who had lost skills like David had. Our pediatrician referred David to one of the pediatric neurologists in Children's Hospital here in Denver. The neurologist took blood samples, urine samples and hair samples and ordered an MRI done on David. The MRI required that David remain still. To keep him still, he was anesthetized. The MRI on his brain was done to look at his brain structure.

When David awoke from his anesthesia, he was still drunk from it. He could hardly walk. I did not understand it. I had been through anesthesia and never felt as high as he seemed to when I woke up. But I carried David to the car with the assurance that he would come out of it soon. When I got home David needed to go to the bathroom. He was still staggering. He missed the bowl and was hitting the wall behind the toilet. I had to help him. It was hard to imagine someone coming out of anesthesia like David did, especially being only seven years old. I had heard that when old people come out of anesthesia, sometimes they can take a long time to get over the effects. Now that I know that there are physiological differences between autistics and the normal population, this behavior after anesthesia makes more sense.

The MRI showed that David's amygdala was slightly smaller than normal. The ped-neuro explained that this is normal among autistics and that if it was swollen, then David would be profoundly autistic. It is another physiological difference between autistics and the normal population.

Finally, David showed no signs of heavy metal poisoning or anything else that might explain why David suffered the skill losses that he did.

Years later, David solved this medical mystery that plagued him and I would relive this chapter of my life over and over.

How do I be God?

I have to say that I was in shock at what had happened to David. He went from a gifted and talented, albeit autistic, child to one who simply could not retain anything that was taught to him.

David, do you know what 6 + 7 is?

Uh, no.

I tried using counters so that he could see how they could be manipulated so that visually 6 + 7 would be 13. After I the manipulation, I said,

See, it's 13.

Oh.

Thirty seconds later I asked him again,

What's 6 + 7?

I don't know!

And David cried. At the time, David would have to be very emotional before he would say anything more than a few words. This was more than he could bear.

Dad, how do I go back?

How do you go back where David?

How do I go back to being a baby?

At that point I knew that David understood that he had lost something and I wanted to cry with him, not only for what he had lost, but because I was afraid that this was only the start. Something had bitten off a piece of what had been David and I was afraid that that shark was still lurking in the water.

You can't go back, David.

I have to!

You can't and I can't do that for you.

Who can?!

Only God can, David.

How do I be God?

You can't be God, David. Only God is God.

The arithmetic lesson was over and for the next two hours, I learned the meaning of the word perseverative. David's math abilities were gone and replaced with perseverative behavior.

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.