Finding Hope When Autism is Severe

The plate exploded. Or at least, that’s what it seemed like before I saw Leland leaning over the banister and realized what had happened.

Leland is ten years old and unable to speak or dress himself. He isn’t toilet trained. He only eats pizza, bananas and Cheerios and he only drinks water. Every door in the house is locked and bolted because he wanders. Police officers and neighbors have returned him to us when he managed to escape through a door we forgot to lock.

Leland is autistic, on the severe end of the spectrum.

His parents have tried numerous treatments and therapies that haven’t worked. But they continue to be optimistic, because once in a while Leland does something that provides a ray of hope. The locked door of his brain swings open, if only for a moment.

My advice to all parents of severely autistic children is to keep hoping, keep loving, and never give up. The human heart is a resilient thing, and love is a powerful antidote to despair. A miracle might lie just around the corner.

On the day of the plate explosion, it was Thanksgiving. We had just started dinner when Leland threw a balloon weight over the banister, shattering a plate full of food. It was one of those weights you get in the Dollar Tree, with a heavy base covered in metallic foil and brightly colored stars shooting from the middle.

Leland likes shiny things, and he likes to throw stuff over the banister. Not a good combination when the object of interest is a balloon weight that can shatter a plate or cause a concussion. He never sits still to eat at the table, being uninterested in food or social interactions, so that’s why he was playing with the balloon weight while we ate.

I felt lucky the weight had landed on a plate instead of on a child’s head.

I cleaned up the mess and Thanksgiving dinner resumed. We were almost to dessert when seven-year-old Eliza tugged my sleeve. “I think you better come with me. It’s important,” she whispered.

I hopped up immediately. You don’t ask questions when Leland’s sister says, “You better come with me.”

Eliza and I found Leland in the bathroom, whirlpool tub overflowing. Not only was he flooding the bathroom. He had dumped about 30 neckties in the tub. Beneath the ties, on the bottom of the tub, was Leland’s Apple iPad. It glowed luminous from under water. There must be something fascinating about seeing a submerged, ruined iPad still glowing in its death throes. This was the third one Leland had destroyed by immersion.

When Leland was four months old, my husband and I babysat while his parents (our son and daughter-in-law) went to a party. There was no sign yet that he was autistic.

“He’s going to be the social one in the family,” my husband predicted, because Leland seemed so responsive and alert. He reacted to our facial expressions and baby talk with lots of smiles and great eye contact.

This all changed by the time he was a year old. He was more difficult to engage, didn’t make eye contact, and he wouldn’t hold his bottle. We had to place him in a certain position on the floor and hold his bottle for him, or he wouldn’t eat. His mother mentioned this to the pediatrician.

“He’s just lazy,” the doctor said.

“That’s the most ridiculous thing I’ve ever heard,” I snapped when I learned about the doctor’s remarks. “Babies aren’t lazy.”

When Leland was sixteen months, he still wasn’t walking. “The doctor says that’s normal. He’s meeting his milestones,” my daughter-in-law told me. “Being a late bloomer runs in our family. My sister didn’t walk until she was two.”

Her words were reassuring, but I had an uneasy feeling. It wasn’t just the walking. Leland didn’t play with any of his toys. He sat Buddha-like on his blanket, disinterested in the world around him.

He’ll become more engage when he starts crawling, I thought. But when Leland finally crawled, he moved away from us without purpose or direction.

My next hope was that he would respond more when he walked. But this didn’t happen, either. He wandered, lost in his own world, ignoring people and toys. Sometimes when he wasn’t wandering he focused for long periods on a bit of carpet or a broom, pulling until carpet fuzz or broom straws littered the floor.

I heard about autism years before it became widespread. One of my earliest assignments as a newspaper reporter fresh out of journalism school had been to cover an autism conference. Back then, autism was extremely rare, affecting one in every 10,000 children. This strange malady was thought to be caused by “refrigerator moms” who were so cold emotionally that their children became unable to express emotion.

I believed at the time that the refrigerator mom theory was nonsense, and it was. Autism is now thought to be a physical disorder caused by brain abnormalities.

Today one in every 68 children is diagnosed with autism, and nobody knows the cause or the cure.

I was the first one to suggest that Leland was autistic. I hesitated to say anything, not wanting to be an interfering grandmother. But I finally spoke up, and was relieved that my son and daughter-in-law weren’t offended. They took Leland to be evaluated. When the doctor suggested he might be hearing impaired, tubes were put in his ears. But this didn’t help. Leland continued to be lost in his own world, unresponsive to words or facial expressions.

Traditional medicine had failed to provide answers, so my daughter-in-law and I took Leland to a naturopath. She observed him for ten minutes, then declared that he was a very sick little boy who needed to be cleared of toxins and fortified with a regimen of supplements. I paid for the $3,000 office visit, which included some of the prescribed supplements.

This was $3,000 down the drain, because nothing changed after the visit.

The next medical intervention was having Leland’s tonsils and adenoids removed. Researchers at Osaka University in Japan studied the impact of removing the tonsils and adenoids of 30 children with autism and obstructive sleep apnea. Between 50 and 80 percent of children with autism experience sleep problems, and Leland fell into this category.

Sometimes his insomnia was an all-night affair of wall banging, bed bouncing, and drawer emptying; a regular party of one.

Adenotonsillectomy is supposed to improve sleep. But not only that. Researchers have noted improvements in areas including attention, socializing and repetitive behaviors.

My son and daughter-in-law figured it was worth a try. Leland underwent surgery, and for a brief period during recovery there was hope. Leland looked his mother directly in the eye and said “Mama.” But hope was short-lived. Once recovery was complete, Leland regressed to his former behavior. There were no more words. Adenotonsillectomy had not proven to be the magic key that would unlock my grandson’s brain.

Maybe his short-lived improvement was the result of something called the “fever effect.” Parents of autistic children have reported striking improvement in their children’s sociability and eye contact when they are sick.

This has been verified by pediatric neurologist Andrew Zimmerman of the University of Massachusetts Memorial Medical Center. Dr. Zimmerman’s advancement of the role the immune system may play in autism has included investigation into reports of fever-related improvements. In one study, 83 percent of children studied improved in at least one aspect of autism-related behavior while they had a fever.

Unfortunately, all improvements were temporary.

My son and daughter-in-law, refusing to give up hope, continued to research therapies and treatment options. They were excited when the Marcus Autism Center agreed to send a therapist to their house twice a week for 18 months.

There were weekly reports of Leland’s progress.

“Leland stacked blocks today! Leland seemed to know his colors! The therapist got him to follow a command!”

But at the end of 18 months, there had been little progress.

Sometimes Leland showed improvement in an area. He played catch for a brief period of time, throwing the ball back when someone tossed it to him. Then he stopped.

This happened over and over again with different activities. We thought we heard him say Hi, but he never repeated it. Improvements were transient, fading as quickly as they had appeared.

When he was old enough for kindergarten, Leland spent two years in public school in a special needs classroom with four or five other children. After this, my son and daughter-in-law placed him in an expensive private school where he receives one-on-one treatment. My daughter-in-law’s father paid tuition the first year. Now in Leland’s second year at the school, my son works long hours to earn enough money to foot the bill.

Is it worth it?

His parents think so, although they aren’t sure. On the one hand, there are Leland’s three siblings to consider. Rearing children under the best of circumstances is expensive. Could the money be better spent on the education of their “normal” children? On the other hand, if there’s the slightest chance of improvement, if this school provides Leland with the tools he needs for a better life, how can they forego the opportunity?

Families with autistic children always wonder, what caused this? For a while, we were sure it was the vaccinations. Leland and his older sister had missed their scheduled vaccinations due to the family’s move to a different area. When their pediatrician discovered the gap, he “double” vaccinated them in order to catch them up. My son believes this was when Leland stopped saying Daddy and began to regress.

Yet we’ve read numerous reports and studies that claim vaccinations have nothing to do with autism. Research seems to bear out the safety and efficacy of vaccines, and Leland’s older sister didn’t become autistic after her vaccinations.

I ran across several articles about the possible connection between autism and ultrasounds. It 2006, a study was conducted in which pregnant mice underwent various durations of ultrasounds. The brains of their offspring showed damage consistent with that found in the brains of people with autism. But there are just as many articles refuting an ultrasound connection.

The steep increase in autism has been, at various times, attributed to environmental toxins, maternal infections, older fathers (my son was 24 when Leland was born), and even the food we eat. Most researchers theorize that it’s caused by a complex combination of environmental and genetic triggers.

But the bottom line is, no one knows.

I believe there must be a genetic component, although to my knowledge there has never been another case of autism in the family. My daughter-in-law’s sister didn’t walk until she was two. My own sister suffers from Tourette Syndrome. Could there be a link? Maybe, or maybe not. There has been speculation about a genetic connection between various neurological conditions, slow development and autism, but no definitive relationships have been established.

My son and daughter-in-law, although not convinced vaccines play a role, did not get Leland’s younger siblings vaccinated. They don’t tell anyone, because revealing the fact that your children aren’t vaccinated leads to rabid criticism, ostracism and hate mail from other parents.

I supported their decision not to vaccinate, especially with the youngest. He was slow to reach his milestones and fragile as a baby. His unresponsiveness caused me to fear that he was autistic, like his brother. But he grew into a responsive, healthy, intelligent little boy, and I heaved a sigh of relief.

My son and daughter-in-law are easygoing, with a positive outlook in marked contrast to many families in similar circumstances. Remaining positive is a challenge because taking care of Leland is a challenge.

Once when I was driving him home from school, I made the mistake of rolling down his window so he could enjoy the breeze. I glanced back in time to see his new shoe flying out the window, tumbling to the grass along the shoulder of the road. When I told my daughter-in-law, she burst out laughing. “That is so like Leland, but don’t worry Mom! It happens all the time!”

A week later, she showed me the shoe, which she had retrieved. I found it in perfect condition beside the road! Can you believe it?

On another afternoon as I was driving Leland home, he hurled his iPad, smacking my head with enough force to produce a lump. I swerved to a stop. “Don’t ever throw another thing at me while I’m driving!” I screamed, grabbing and holding his arms. “I am trying to get you home safely through this traffic, and we might not get home if you do that again!”

Did he comprehend what I said? He gave no indication, but he hasn’t thrown anything at me since. On our next drive, I felt a gentle nudge. It was Leland’s iPad. He was slowly sliding it toward me, nudging my elbow. He wanted me to put it in the front seat.

Dealing with a severely autistic child is not an easy road for my son and daughter-in-law, but I’m happy they can continue to be joyful and optimistic.

There are always positives. My husband took Leland to the pool every day for a week last summer and taught him to swim. Leland’s parents ordered a “custom” toilet designed especially for autistic children, and Leland has used it a few times, giving us hope that he will soon be toilet trained. Leland’s sisters exhibit a depth of compassion and kindness beyond their years and will not tolerate anyone making fun of their brother.

Each day brings its trials, but it also brings its joys. When we focus on the joys, we can look to the future with hope and courage.

One afternoon before Christmas, my car radio was turned on when I gradually became aware that Leland, who was in the back seat, was playing his own music. I turned off my radio to hear what he was listening to. He played God Rest Ye Merry Gentlemen on his iPad, followed by other Christmas carols. When we got to his house, my daughter-in-law said, “Isn’t it cool that Leland listens to Christmas music on his iPad? He found the music himself. He knows it’s Christmas!”

Before I pulled out of the driveway, Leland turned around and looked at me. The corners of his mouth tugged up in a smile. Then, just as fleeting as the eye contact, his smile was gone. But my heart soared, and I believed at that moment in miracles.

Writer, editor, publisher, journalist, author, columnist, believer in enjoying my journey and helping other people enjoy theirs.

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