Hindsight is 20/20

I am proud of myself. I have been staying focused on my intentions. Even if I am still taking “turtle steps” on a couple of them. It is still January and I have finished reading my third book. I finished my book club book last week with plenty of time to spare. My first book club Zoom meeting with a few friends is not until Friday.

But you know me. I had to read another book about autism. I was drawn by the title. “The Boy who Felt too Much”. The book is written by Lorenz Wagner. It’s a story about renowned neuroscientist, Henry Markham, and his son Kai, and how they changed our view of autism forever.

Years ago at a meeting with his therapist, Travis told her that he didn’t feel anything. She told him that she would argue that he felt too much. I don’t attend most of his therapy sessions, but I was there for this one. I remember thinking a lot about what she said. It made sense. We already knew that Travis was dealing with severe sensory issues. He had also already shared with me that he was an empath. That he picked up on the energy of others.

I could not put this book down. For many reasons. One is because this could be the story of Travis. Several times while reading this book I could exchange the name of Markham’s son, Kai, with the name Travis. Another is because Kai’s father is a neuroscientist, but he still made the same parenting mistakes we made. He still felt the guilt of not getting it right that we feel. He had plenty of funds, but still couldn’t find the right school setting. In multiple countries.

In the end he came to the same determination that we did. He began to think less about Kai’s educational prospects and career opportunities. All he wanted for his son was to find a path to happiness.

Markham describes his son as “loving people”. We describe Travis as “knowing no strangers”. Apparently it’s the same thing. Talking to random strangers. On the bus on the way to a baseball game. In line as you’re waiting to get in. Tapping the back of a man sitting in front of you in order to show the man that he has a tattoo as well. I could go on about this all day. Or I could give a million examples of other places and other days.

Markham said because his son loved people and made eye contact, it was difficult to get the autism diagnosis. Even though every other symptom called for it. Been there. Wagner writes about the Markham family, “None of the doctors they consulted sent them on the right track. They all saw individual symptoms, never the full disorder. They saw puzzle pieces, rather than the big picture.”

Kai would cover his ears. He refused to go to movies.

I remember doing chores as a family on the weekends. We would each have a chore. If we each completed our chore our reward would be to have dinner out and go to a movie. Even with several reminders, Travis wouldn’t complete his chore. Looking back, I wonder if he didn’t complete his chore because he found eating out and the volume of movies too painful? Even today he has difficulty eating at a restaurant. Oftentimes he will wait outside. We text him when the food arrives. He doesn’t ask me for money to attend a movie with a friend. Ever.

Markham said that Kai was clumsy. Had to get stitches again and again. Sounds familiar. For Travis is wasn’t just stitches, but also broken bones.

Kai showed compulsive behavior. Hmmm. Travis too. This also played a part in the resulting stitches and broken bones.

Kai couldn’t remain on task. His first diagnosis was ADHD. This is exactly how Travis’s story played out.

Markham said that Kai acted as if the world revolved around him. As he was getting older, the charm of his idiosyncrasies was wearing off. Teachers started treating him differently. Classmates started taking advantage of him. They got him to do their bidding.

He started to throw temper tantrums. For no apparent reason. He would hurl himself to the ground, shrieking, flailing, pounding his fists. He kicked the principal. They tried Ritalin.

In case you’re confused, I’m telling the story of Kai. But also Travis.

Let me repeat one point. Kai’s father is a neuroscientist. So he asked a lot of science type questions. He asked in laboratories and in hospitals. Why does a stimulant medication help to calm a restless child? No one he asked knew the answer. And was it that important to know if it worked?

Unfortunately Ritalin made everything worse. It did for Travis as well. I found Travis in the rafters of our garage. Screaming at me that he would jump if I made him take it for even one more day. Markham said Kai screamed, swore and spat even more than before. Same for Travis.

We just didn’t understand how painful attending school must have been for Travis.

Markham tells a story about Kai wandering off in a crowd. They saw a crowd forming, they heard music. As they pushed their way through the crowd they realized the music was coming from a snake charmer playing a flute. A cobra danced in front of the charmer. A real one. With poisonous fangs. Meandering back and forth. Hissing. With Kai walking toward him. As if in a trance. He yelled at his son to stop. The crowd yelled at him to stop. He walked right up to the snake and started petting it. Markham grabbed him and carried him to safety.

We have similar stories. I wrote in an earlier blog, “A Sticky Adventure”, about Travis getting stuck in a thick mud in a lake behind my business at the time. It was a scary story ending with the fire department coming to save him and a visit to the hospital. And yet the next time he was with me at work, he headed down to the lake. I ran behind him calling him, but he kept heading towards the lake. As if he was in a trance. Only after I got between him and the water was I able to break the trance.

Same type of story, different country.

When describing Kai, Markham said that it was hard to distinguish between stress and defiance. Wagner writes, “Sometimes he had the impression Kai knew all to well how to play his cards, that he was the master of manipulation”. I’m nodding my head up and down. Another yep.

They tried several different schools. They tried many different therapies.

Kai did finally get the autism diagnosis. As did Travis. One specialist told Markham that autism is often mistaken for ADHD. The difference is seen by watching children interact with each other. Kids on the autism spectrum will talk only about their interests. They are also very sensitive. They cannot stand noise, labels in their clothing. They take everything literally.

Markham stated, “Most people assumed that I as a neuroscientist, could help my child more than other parents. They were wrong. I felt even more powerless.” Their family life was built around their son. Rituals became a burden. They couldn’t find socks he would wear. His sandwich had to be made a certain way. His pillow had to be in the right place.

Their son couldn’t muster joy.

Per Markham, “All thoughts of the future were fraught with fear. Who would take care of him when they were no longer there? Not to mention the constant nagging of their guilty conscience.”

Their pulse rose every time the phone rang. (Mine still does.)

Markham didn’t recognize the severity of what was happening to his son. Neither did we.

Wagner writes, “Some diseases take hold suddenly. Others creep up on you, but if you’re vigilant, or lucky, you can catch them early. Afflictions of the mind creep up on you even more insidiously. One cannot screen for them. They remain invisible long after they’ve developed. They come disguised as a quirk, a tic, or a minor discontent.”

The book goes into great detail about all of the autism specialists Markham talked to or met with. Specialists were willing to speak to him because he was a scientist that wanted to learn everything he could about autism. He worked with brains. He wanted to know what was going on in the brain of an autist. He developed a research team. They tested on rat’s brains. This is a pretty simplistic description of the research story. Make sure to read the book if you’re interested in the science of it. I can sum it up a bit for you.

It took until the end of the twentieth century for a consensus to emerge. Wagner writes, “Certain people are genetically predisposed to autism. It is likely triggered by environmental factors, such as alcohol, mercury or medications when the brain is developing in utero.

There must be another factor. We know this because there are identical twins with only one having autism.”

Wagner writes, “Our feelings develop in two parts of the brain, the amygdala and the cerebral cortex. They contain our very character. Even minor flaws can disturb their equilibrium.

How a person thinks, feels, and develops is determined by interactions between their neurons. When a child’s brain grows, the child isn’t growing more neurons, but augmenting the connections, the pathways between them. If those pathways are disturbed, that changes how a child develops. If the pathways between the cerebral cortex and amygdala are disturbed, your feelings will be disturbed as well.”

During his research, Markham found that the existing autism medications were geared toward improving neural capacity, toward stimulating the brain. Wagner writes, “Medications were derived from research that focused on the deficits of autistic people: learning disabilities, speech impediments, genetic defects.”

Markham also found that existing research focused on the cerebellum. He believed the cerebral cortex was much more important. Per Wagner, “Particularly the neocortex. It contained memory and emotion, those higher cognitive abilities that make us uniquely human - faculties that are impaired in autistic children.”

Markham began his research by looking for faulty neurons. He believed that if he located the flaw a medication could be developed. One that offered genuine relief.

Markham is renowned for his research on how cells communicate with each other. This was his area of interest even before he had a son on the autism spectrum. He had an uncle that had been diagnosed with depression. When he was fifteen-years-old his uncle died by suicide. Markham decided that he wanted to, “fight the scourges of his time: Parkinson’s, ADHD, depression and autism. Those were the new epidemics, the number of cases growing exponentially year by year”.

While researching cells from autistic rats (long story but they were able to give rats autism) in the cerebral cortex, where higher cognitive functions are located, the cells responded more intensely than usual. They had predicted the exact opposite to happen.

Markham gives the example of 9-11. Everyone remembers where they were and what they were doing when the airplanes hit the Twin Towers. He explains that is how our brains work. The amygdala is where our fears come from. When we experience fear the amygdala over-performs sending signals to our memory.

He found that the autistic cells didn’t have a deficit of feeling, but instead, a surplus. The memory we have of 9-11, is what individuals on the autism spectrum are feeling daily. They have greater fear and are better at remembering it. Markham said that Kai seemed able to recall every minor trouble that he had experienced, he was unable to erase a minor hiccup from memory. Even the time his parents forced him to eat lettuce.

OH. MY. GOSH.! Those of you who know me more personally have heard me tell these stories. Stories of Travis remembering every little slight in his life. There are lots of slights. I get to hear about them again and again. I have asked several professionals why his brain not only remembers them, but goes to them when he is in an elevated shaky mood. I never got an answer. Now I know. And so do you.

Wagner writes, “If you can’t forget, you end up mired in the past. If you can’t forget, you end up stifling your spirit. Neglected or abused children often behave like they’re autistic. They, too, are trapped in old suffering.”

Markham said that if he was just a scientist he would have stopped the experiment. He would have reviewed all the past research, the insight of the past decades and concluded that, for whatever reason, they were on the wrong path. He would have started over.

Except that he had a son with autism. “His results clashed with the consensus, but fit his son perfectly.”

His finding was that individuals on the autism spectrum were not feeling too little. They were feeling too much. Withdrawal was not the disorder, it was the reaction to feeling too much. Sensitivity was not trivial. Individuals on the autism spectrum were living in an unbelievably intense world. Markham calls his theory “Intense World Syndrome”.

Wagner writes, “Imagine stepping out of a cave into the desert sun and you’ll get an idea how an autistic child sees ‘normal’ light.”

Travis has told me countless times that the sun is too bright. It hurts his eyes. I spent the extra money for him to get eyeglasses that automatically darken like sunglasses when it is bright. He prefers to sleep during the day and be up at night. Could this be why? His doctor tells him that he needs to be up during the day, it is better for his internal clock. And his depression.

Noise. Travis hears everything at the same volume. The ceiling fan, the refrigerator, someone scraping a chair, people talking. As a child he covered his ears. As an adult he wears his headphones. Imagine hearing all sounds at the same volume. All the time. Every day. I would have a meltdown too.

Per Wagner, “An autistic child perceives the world with a sensitivity that you may experience a few times in your life. He would be lucky to escape Earth altogether, but he’s stuck here. They experience the world in a different way.”

Markham felt so much guilt. They had tried to teach Kai to live with or overcome going to movies, vacations, loud restaurants. “Not only were his feelings amplified and his senses over-developed, but he also wouldn’t be able to forget. Every trauma, every minor pain branded him. Every overwhelming experience is a bad experience. And you cannot make up for it.”

Wagner writes, “The autistic brain eventually collapses on itself. Exposed to all of that overstimulation, parts of the brain gets out of control. Some areas overheat; others shut off entirely. The brain becomes unbalanced. And since the world is what your brain makes of it, autistic people live in another world. The children who become the most reclusive have the most powerful brains. It’s infinitely tragic: the kids who feel the most are the least capable of expressing it.”

An individual on the autism spectrum does not need their brain to be stimulated. They need it to be calmed down.

Markham’s wife, Kamila, said something that really resonated with me, “So much of that knowledge is theoretical, though. I can talk for hours about the Intense World Theory and the miracles that occur in autistic brains. But when your kid refuses to wear a particular pair of socks in the morning, you still think, No, not again, not every morning. It’s easy to forget everything.”

I resemble that remark. With all that I have learned over the years, I still get frustrated.

We all know that the earlier the autism diagnosis, the better the outcome. Markham believes that giving a medication that stimulates the brain accelerates autism. He says, “To give your child a chance in the future, you must slow down its present. At the first sign of autism, an avoidance therapy should begin, and it should continue until the child has gone through all sensitive periods of brain development, until it goes to school at the age of six. Unlike a normal child, an autistic child should grow up in a world that is filtered, sheltered and protected. Their lives should be calm and predictable.”

Unfortunately, many children get diagnosed after age six. Our current lifestyles make avoidance therapy practically impossible.

Travis is twenty-seven-years old. Is it too late?

Per Wagner, “Treating older children and adults is more complicated, but their suffering can also be mitigated, their clinical signs reversed. The therapy is the same: calm the brain, foster forgetfulness, reduce fears and stress. Don’t intervene in their rituals. let them count the lines on the pavement.”

Markham continues his scientific research. He is the man behind the Blue Brain Project to build a supercomputer model of the brain with a goal of decoding all disturbances of the mind.

More and more information is coming to light regarding autism. As parents, Tracy and I did our best with the knowledge that we had available at the time. If a doctor tells you that everything is fine, you believe them. A doctor is supposed to know.

Hindsight is 20/20 for sure. I will continue to learn as much as I can about how we can help Travis moving forward. I will continue to learn as much as I can so that I can better understand him. I will continue to leave no stone unturned. I made a promise.

“The bright side of 2020 being the worst year ever is that it will drastically reduce the amount of HINDSIGHT IS 2020 jokes next year.” - madlymomming.com

“You gotta stop watering dead plants.” - Author Unknown