Saturday, January 24, 2009

David's first words (beyond echolalia)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday, January 23, 2009

Oh those ears

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

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

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

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

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

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

"Yeah!" David yelled and he hung up.

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

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

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

Retarded? Hardly

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

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

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

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

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

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

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

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

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

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

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

Sunday, January 18, 2009

Potty Training

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

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

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

Saturday, January 17, 2009

Starting Early Intervention

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

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

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

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

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

Friday, January 16, 2009

Why would I question medical statistics related to autism?

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

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

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

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

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

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

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

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

Saturday, January 10, 2009

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.

Friday, January 9, 2009

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.

Thursday, January 8, 2009

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.