Vaccine table

Take a look at this table.  This is a table taken from CDC vaccine data showing three of the ingredients in vaccines.  The method of showing that a vaccine has nothing to do with autism is to take a vaccinated population and remove one of the vaccines, one of the lines from the table.  Then when the rate of autism is not significantly different from the normal vaccinated population, that vaccine is declared to have no effect on the autism rate.

But suppose that one of these three ingredients were responsible for the autism rate.  How would removing one of many vaccines from the vaccine schedule significantly affect the autism rate?  It wouldn't.  If one of these three ingredients were responsible for the autism epidemic then not even the excluded vaccine could be exonerated.

The bottom line is that the conclusion that any vaccine has been exonerated by such experiments is invalid.  All such experiments have to be thrown out.  Unfortunately, this is the method that has been used by the med community to "prove" that there is no connection between autism and vaccines.

So much for leaving science to the scientists.

	Aluminum	Foreign Protein	Form-aldehyde
Adenovirus		x
Anthrax (Biothrax)	x	x	x
BCG (Tice)
DT (Sanofi)	x	x	x
DTaP (Daptacel)	x	x	x
DTaP (Infanrix)	x	x	x
DTaP (Tripedia)	x	x	x
DTaP-IPV (Kinrix)	x	x	x
DTaP-HepB-IPV (Pediarix)	x	x	x
DTaP-IPV/Hib (Pentacel)	x	x	x
Hib (ActHIB)		x	x
Hib (Hiberix)			x
Hib (PedvaxHIB)	x
Hib/Hep B (Convax)	x	x	x
Hep A (Havrix)	x	x	x
Hep A (Vaqta)	x	x	x
Hep B (Engerix-B)	x	x
Hep B (Recombivax)	x	x	x
HepA/Hep B (Twinrix)	x	x	x
Human Papillomavirus (HPV) (Gardasil)	x	x
Influenza (Afluria)
Influenza (Fluarrix)			x
Influenza (Fluvirin)		x	Nonylhenol ethoxylate
Influenza (Flulaval)		x	x
Influenza (Fluzone:  Standard, High-Dose, & Intradermal)		x	x
Influenza (Flumist)		x
Japanese Encephalitis (Ixiaro)	x	x	x
Meningococcal (MCV4-Menactra)			x
Meningococcal (MCV4-Menveo)		x	x
Meningococcal (MPSV4-Menomune)		x
MMR (MMR-II)		x
MMRV (ProQuad)		x
Pneumococcal (PCV12 - Prevnar 13)	x	x
Polio (IPV - Ipol)		x	x
Rabies (RabAvert)		x	phenol
Rotovirus (RotaTeq)		x
Rotavirus (Rotarix)		x
Smallpox (Vaccinia -		x	phenol
ACAM2000)
Td (Decavac)	x	x	x
Td (Tenivac)	x	x	x
Tdap (Adacel)	x	x	x
Tdap (Boostrix)	x	x	x
Typhoid (inactivated - Typhim V1)			phenol
Typhoid (oral - Ty21A)		x
Varicella (Varivax)		x
Yellow Fever (YF-Vax)		x
Zoster (Shingles - Zostavax)		x

A major change

How many believe in the gluten free, casein free (GFCF) diet?  It did not work for David.  He was on it for about a year without any change.  For me, the GFCF diet is the right idea with the wrong approach.  It works for a small percent of the autistic population, though I have to say that if you have an autistic child who is one of that percentage, it can be a big thing.  My brother's son is an Aspie.  Both he and his wife have told me that the GFCF diet is a real pain to keep up with.  At the same time, it is not nearly as bad as what happens to their son when he gets off the GFCF diet.

I have several problems with the GFCF diet.  It is based on leakage of gluten and casein peptides into the blood stream through the blood gut barrier.  There is evidence for this in the urine samples.  It makes sense to try it because as medical interventions go, a) It does not hurt, b) It is not that expensive, c) It is hard to think of any way it would have side effects, d) With those for whom it does work, the effects can be profound.  On the other hand, are gluten and casein peptides the only peptides that leak into the gut?  And, if the blood-gut barrier is permeable, then what about the blood-brain barrier?  The GFCF diet begs both of those questions.  Yet these two questions could explain why the GFCF diet is effective on some and not on others.  It could also explain why the GFCF diet helps but it does not change the fundamental fact that the child is autistic.

When David was in the seventh grade, I came across a paper that talked about glutathione being in the bile which is secreted by the liver.  Anyone who has read my previous posts knows that I am interested in glutathione and the sulfur amino acid chemistry.  So the question was why does the liver put glutathione in the bile?  It is very seldom that you find the body doing something like this without a reason.  The paper speculated that glutathione is in the bile to preserve the blood-gut barrier.  Put this with the low levels of autistic glutathione and gut leakage it is a reasonable, though unproven hypothesis that low levels of glutathione mean gut leakage which in turn means behavior problems for autistic children.  I don't claim that this is all that autism is.  But being able to take care of one aspect of what autism is can be a positive development.  For this reason, I decided to try having David take glutathione with cod liver oil and fish oil.  The amounts were as follows:

250 mg glutathione
1000 mg fish oil
500 mg cod liver oil

I typically spent 2 hours a night dragging David through his homework.  I had to get David to focus on each problem long enough to recognize what the problem was.  David would read the problem and realize that he did not know the answer.  Then I would turn the page to where the answer was.  Then I would get him to focus on it long enough to read the answer.  More effort would be required to get him to write the answer in a sentence form.  An answer that required three sentences would bring howls of protest.

That was David before the glutathione and fish oil.  After two weeks of being given this each day, David was doing homework by himself.  I can't prove that it was the glutathione and the fish oil that made the change.  At the same time, the change was too dramatic to ignore. 

I don't claim that it will work for others.  But if you should try it, post your results if you will. 

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.

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.  http://journals.lww.com/epidem/pages/articleviewer.aspx?year=2009&issue=01000&article=00016&type=abstract  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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

David's diagnosis

When David was two, he went for a well checkup. He still had not started talking and the pediatrician was concerned. The first suspect was David's hearing. I was not optimistic that the hearing check would reveal anything. David had receptive language. He just could not talk. The pediatrician had his hearing checked anyway and of course, it showed no issues.

Eventually, our pediatrician referred us to a pediatric neurologist. I was concerned about a lot of things that went way beyond his inability to talk so I wrote down all of the strange things David was doing.
Not talking though he could clearly respond to commands
Humming like a bhuddist monk
Playing continuously with his toy vacuum cleaner
Not engaging with other children
Not sleeping at night
Lack of eye contact
His bout of head banging
(He had sound sensitivity, but I didn't recognize it)

In the course of our discussion with the pediatric neurologist, I gave him the list that I wrote down. He asked if he could keep the list. It was an excellent discription of autism.

I am glad I had gone to the bathroom before meeting with the pediatric neurologist. I am not sure I could have held it. I objected. Autistic children are touch sensitive. David is not. Autistic children go nuts when there is a change. David is easy going and handles change well. David is cuddly. He could not be autistic. But the pediatric neurologist let me know that the symptoms are different from one autistic to another.

Well, there it was. We had a diagnosis. Although I make it sound like it was just two meetings with two doctors, it took a lot longer. Each time another appointment with no result. But now that we had a diagnosis I felt sick. I had no idea what David's being autistic would entail. The one instance I had seen said that David would grow up to be monstrous. But more than that, I kept looking for what I had done wrong. My wife and I did not do drugs. We did not hurt him. We did nothing that might cause David to be autistic. So what happened? Where did I go wrong? I had no answers and yet I felt there had to be something.

It was a long phase of baying at the moon for me. When my father died, I did not feel the sense of loss as acutely as I felt when I learned that David was autistic. It was the death of everything I wanted and expected for my son. I thought that getting comfortable with David's diagnosis would be like getting comfortable with a permanent case of the shingles. All that time, David was still David, the cuddly, sweet, lovable, easy-going little guy. Without ever saying a word, David transcended my sense of loss. David made it easy for me through what otherwise would have been a painful maturity lesson. I did not have a broken doll, I had a little boy who was worthy of my time and effort.

Is spanking ever okay?

David was very late weaning from the breast. There may be some who would argue that this is the reason he was high functioning. There are others who might argue that this is the reason he was autistic. Sigh. I would argue that David loved to cuddle and breast feeding made it even better. At night, David would come to our room to feed and fall asleep next to his mother. Breast milk is sweet. The repeated overnight effect of the milk was that there were visible cavities in his teeth. He had dental work done under anesthesia and when he woke up he had metal caps over his incisors.

One day we discovered what looked like mouse bites being taken out of the insulation on the cords of our electric blanket. My daughter, Lisa, reported that David was biting into the cord. I could not be sure that David would survive a bite into a live wire. Fortunately, the blankets had been off when David bit into them but if he bit into other cords or if he bit into these when the blanket was on it would be a death sentence. The metal caps would send 110 volts through the dental nerve straight to his brain. Even if he survived, who knows what would be left of him.

I took David up to my room and showed him the blankets electric cord that he had bitten. The electric blanket had both sides unplugged and left in place. If David was to continue biting electric cords, I wanted him to bite cords that I knew were unplugged. The cord had bare copper strands showing where the insulation had been bitten away by his teeth. I explained in short sentences, simple yet adamant language, "Don't bite. Not allowed. Don't touch." In a flash of recalcitrance, David stuck the blanket's electric cord into his mouth. Just as fast as I could move, I had David over my knee and spanked him hard enough that it hurt even through the diaper. Just as fast I picked him back up and brought his face three inches from mine.

"Never again!" I growled. David was shocked. I had never done this before and I watched him break down and cry.

I did not like myself for doing what I did and yet I could not allow David to continue to bite electrical cords. The spanking worked. David never did it again. But I see that as being because David had never been spanked before. Looking back, I will not apologize for it. The cost of doing nothing would have been too high and it would have been irreversible.

David at two years old

Autism was something that I had seen on Sixty Minutes or some other news magazine. That was the first I had ever heard of it. I never knew anyone, nor knew about anyone who was autistic when I grew up. My wife, Yvette and I already had two children and David was our third and last child. When I saw the segment about an autistic child, it did not cause me any concern. Autism was really rare.

At two years old, my son, David, never acquired language. He had occasionally said a word, but he never had anything I would count as emerging language skills. At least he had no spoken language. He clearly took instructions that one would expect from a two year old. But he never said anything. In my family, (I come from a family of 10 kids) we had late speakers. So I wasn't worried. As far as I was concerned his language would come when it was ready.

At two years old, David started head banging. Two of my brothers had done that when they were little. Again, no big deal. When my brothers would bang their heads on the floor, my father would shrug his shoulders and say, "As long as they don't hurt the floor." I wasn't cavalier, but I was optimistic. My brothers grew out of their head banging phase and I figured that David would grow out of his.

It got worse. Even when my brothers would band their heads you could see that there was a measure of self preservation. If they banged their heads too hard, then the next time would be a lot softer. David was different. After the first few times, his forehead looked like he was budding a unicorn horn. Our parental instincts overruled my experience growing up with my brothers. Yvette and I did not make a big issue out of it. Each time David would get frustrated and start banging his head, we would simply pick him up and get him interested in something else. Yvette and I were lucky. It took maybe a month. David stopped head banging and never took it up again.

David could not stand loud noises. At the time, I did not understand the extent of this aversion. If his brother or his sister cried, David would throw a fit. He would scream loud enough that it did not occur to me that it was the loud noise of his older brother or sister crying that was upsetting him. If loud noises upset him, wouldn't screaming make it worse for him? As with head banging, the idea was to move him away and get him interested in something else. It got him calmed down and peace would be restored in the house. The vacuum cleaner, the drill, any appliance that made a loud noise would make David jump through his skin, yet David delighted in flushing the toilet. I didn't know what to make of that, nor did I think anything should be made of it. Kids like to see cause and effect. Push the handle and watch the water go down.

David had a toy vacuum cleaner my sister gave him that he loved to play with. It seemed that he could stand there moving it back and forth humming like a buddhist monk and listening to the clicking noise that the toy vacuum cleaner made. It was his favorite toy until he got a toy lawnmower that also clicked when it was moved around. Even though David was fascinated by these toys and could play with them for hours, he never objected when we led him off to pursue something else. I thought he was fascinated, but not obsessive. Again, not knowing any better I was not worried.

David never had touch sensitivity. He loved to cuddle and did so with both Yvette and me. He loved to be tickled and he had no trouble with any of us taking his hand. If I was sitting down he would climb into the chair with me just to sit close.

There was a love/hate relationship between David and water. David loved to play in water, but he could not stand to have his clothes wet. He would climb up to the sink and play with the water, and then take his clothes off. At this age, it was nothing to worry about. He would grow out of it.

While this is a description about David, it also says something about my wife and me. Neither of us had any idea about what all of this meant. We did not know what his looking away meant. We did not know what his sound sensitivity meant. We did not know that, yes, some kids learn to talk late, but when all of these things are added together we should worry. And David was not like the one example I had seen on Sixty Minutes. He was cuddly. He was not touch sensitive. He did not destroy the room if his clothes were not laid out for him. He was even tempered. He adapted to changes well. Even when the memory of that one example came into my head, I just knew that David was not autistic.

Autism was unheard of because it was not prevalent back then. I really feel ignorant when I look at myself back then. But then, so was everyone else.