Friday, February 27, 2009

Exogenous or endogenous

I pose this question to the autism community. Is autism exogenous or endogenous to the brain? That is, is the cause or the origin of autism external to the brain or is the cause inside the brain. Are the brain issues from something happening inside the brain or do they originate from a condition outside the brain?

For many this question will be meaningless. For others, it may even be threatening. But for you in the autism community who play bridge, it is a trick question. For those of us who play bridge, we often play hands where the only way to make them is for the cards to lie a certain way. When that happens, the professionals who write bridge columns in the newspaper tell you that if the cards have to lie a certain way to make the hand you assume that the cards lie that way and play to win.

If autism is endogenous, then everything lies behind the blood brain barrier. Any drug or treatment that would be applied to an autistic individual has to penetrate the blood brain barrier without compromising it. To compromise the blood brain barrier to treat autism is to fix one problem while causing another. Gene therapy is a long time away and may not happen in my lifetime or even my autistic son's lifetime. The assumption that autism is endogenous is a losing assumption, even if it is right.

On the other hand, if autism or its symptoms are exogenous then they lie outside the blood brain barrier and therefore are treatable. It would then be possible for effective medical treatment to be found in my lifetime and the lifetime of my son. That makes the assumptim that autism is exogenous a winning assumption, even if it is wrong. When it comes to autism, I want to play to win.

Fortunately, there are indicators that autism or at least some of its symptoms are exogenous. The first indicator that I saw came from Dr. Rosemary Waring. She measured how long it took autistic children to process tylenol through their bloodstreams and out through their kidneys. Autistic children were almost without exception statistical outliers taking statistically impossible times given they were part of the normal population. Autistics, like alzheimers, parkinson's, down's syndrome, Lou Gehrig's, alcoholic's dementia all have abnormalities in glutathione levels with the levels being low. The reason for the GFCF diet is that peptide products were found in the urine of many autistic children. These peptides belong locked up in the intestines and not in the blood stream. If the blood gut barrier is compromised, does it not also stand to reason that the blood brain barrier could also be compromised? Note that all of these are occurring outside the brain and therefore they should be treatable.

This posting is meant to inform the reader of my opinion. Autism is most likely exogenous and therefore should be medically treatable. Indicators are not proof, but I will not try to prove this. The exogenous assumption is a winning assumption and the endogenous assumption is a losing assumption. For my son's sake I will only bet on the exogenous assumption.

Sunday, February 22, 2009

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.

Saturday, February 21, 2009

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.

Saturday, February 14, 2009

The charmer

There was a bill being introduced to the Health, Education, Welfare and Insurance committee in our state. The bill would define autism as a medical condition under state law. Heretofore, it had been defined as a psychiatric illness. The insurance companies were strongly opposed to it as it was viewed as a bill through which mandatory coverage of autism would be introduced. To be sure that was part of the issue, but it was not all. As long as autism is seen as a psychiatric illness, it will be seen as incurable. Also, all autistics would carry a stigma that, as adults would bar them from any position that would not allow anyone who suffered a psychiatric illness to hold.

I was asked to testify to the committee and since David was known in the autistic community for his ebulience, I was asked to bring David. David's first grade teacher, the same one he had for kindergarten thought it would be a good idea. David and I arrived to a heated atmosphere. One of the mothers had just finished testifying about how she had to quit her job so that she could qualify for medicade and get the state's help to pay for her daughter's treatment. That was not well received by the members of the HEWI committee. Before that there was acrimony and bickering between the autism community and the insurance companies. It was not going well at all.

Finally it came our turn to testify. David sat in my lap as I set myself in front of the microphone to begin answering the committee's questions. As I was beginning to answer the first question, David stood up in my lap and started to tap on the microphone.

"David play da microphone? Yes, David play da microphone. One, two, fi, four, five, five, four, fi, two, one. He continued blowing in the microphone while I continued trying to answer the HEWI committee's questions. The HEWI committee got a real kick out of him. Finally, I put David in the chair next to me and asked him to sit quietly while I finished answering the committee's questions. All the while I finished answering the questions David continued to smile up at the committee. I did all the talking, but I was completely upstaged by David. It was a good thing too. David's smile and his antics turned the atmosphere in the committee around. It was like a secret weapon. The bill soared through the committee and passed through the senate and the house. David's name was in the paper the next day with appropriate credit given to him for providing the testimony that got the bill through.

Several weeks later the bill was being signed by our governor. The signing was scheduled for 10:00 and it was after 11:00 when the governor finally arrived in his office for the signing. All that time, I had to carry David on my shoulders or in my arms even though he was six years old. This was necessary because otherwise David would be off at my first inattentive second. Then I would be searching all over the capital building for him. By the time the governor arrived in his office my arms were like rubber. My family is afflicted with a condition known as familial tremors. It is a shakiness of the hands that is passed from father to son and to a lesser extent to daughters. I have it. My father had it and David has it as well. It gets worse with stress and the stress of keeping David in place in my arms for over an hour was quite a stress. When I finally shook the governor's hand, it was like grabbing a jack hammer for the governor. He quickly withdrew and was staring at his hand. I made a quick exit with David. I wish I had David's charm. Perhaps I could have handled it better.

Wednesday, February 11, 2009

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.

Monday, February 9, 2009

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.

Saturday, February 7, 2009

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.

Sunday, February 1, 2009

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.