Autism: Early Intervention

by Charles G. McGuigan 02.2008

Back in 2003, shortly after my son’s second birthday, I began noticing things about little Charles that didn’t seem quite right. I was reluctant to talk with his mother about these behaviors, but they were there all the same. They were small things, insignificant, yet they seemed symptomatic of something dire. When I’d pick him up from his mom’s house over in Lakeside, I’d notice the same kinds of behavior there as I saw over in my Bellevue home. He would line up his Hot Wheels—trucks and cars—front bumper to rear bumper, place them in a line so straight and unwavering it seemed he had used a ruler to achieve the effect. And he was obsessive about it. God forbid one of them got out of line: A total meltdown would follow and there was no consoling him then. 

Of his hands, he would make puppets that seemed to be talking to one another, sometimes frantically, and he would follow their actions closely with his eyes, squinting, three inches away from them, as if to discern deeper meaning in their seemingly random movements.

Plus, he wasn’t talking, and he was slow to walk. His pediatrician said just wait and see; his hearing was fine, his vision checked out. That was reassuring, but I still had my doubts.

Many people I talked with about my son’s development said the same thing, “All kids develop at different rates.” And this: “Boys are slower than girls.” My daughter, Catherine Rose, five years Charles’ senior, had matured much more quickly. She was walking by the time she was a year old, talking non-stop by age two, dressing herself before she was two, coloring profusely just over a year and so on and so on. There was no comparison between the two; they were worlds apart. 

A Kind Of Spectrum

Charles would also do uncanny things. One afternoon in the late winter, a freezing Saturday crusted with dirty snow, as my kids and I played on the living room floor, secure in the cocoon of our home, Charles stacked up a half-dozen soft, foam rubber puzzle pieces. I didn’t notice anything unusual about the order, but Catherine called my attention to it. 

“You see what he did?” she said. 

I shook my head.

“They’re the colors of the rainbow,” she said. And sure enough he’d stacked the puzzle pieces in their ascending prismatic order—violet, blue, green, etc. I thought, perhaps, it was an accident, so I took the stack apart, scattering the puzzle pieces across the floor, and once again Charles mimicked the spectrum when he reassembled them. He was just over a year old at the time and I don’t think he’d ever seen a rainbow or shattered light through a prism, yet he seemed to understand the sequence.

In the corner of our living room, behind the front door, stands a carving of a hornbill, its feathers black and white, its bill, eyes and feet a garish orange. It was a gift several years back from an old and dear friend, Stephanie, who had her right leg amputated just below the knee, but nonetheless continued to trot the globe. She brought our bird back from a visit to Guinea Bissau and when Charles was not quite two, on unstable legs, he would approach this wooden bird, his approximate height, stand eye to eye with it, pet its head, look deeply into those orange eyes as if he might elicit a response, make this piece of senseless wood communicate with him. He would do this every day; it became part of his routine, his ritual. His tiny hands stroked the wooden torso, the baby skin of his fingers sometimes snagging on the rough etching that described the feathers. And he would stare into those dead wooden eyes, fifteen, twenty minutes at a time, trying to coax a response, but the bird remained mute, at least to my ears.

An Electrical Charge 

During a summer power outage, late at night, not a wisp of air moving through our house, the kids and I lay on the bed, drenched in sweat, and I read to them by candle light and oil lamp. I turned the pages slowly so Charles could see every picture in “The Clown of God”. By the time I was finished, Catherine had already drifted off. I blew out the candles, turned down the oil lamp until the flame died. Minutes later, Charles sat upright in bed and clapped his hands once, saying, “Lights on.” And immediately the power, which had been off for three days, came on and with it the lights, fans, air conditioners, refrigerator and aquarium pump, so the house again began to hum with a satisfying electric life. I wondered if his brain had somehow perceived the motion and energy of electrons along their copper conduits nanoseconds before the power was restored. Of course, it could have just been a coincidence. But still. 

My mind lit up with the word autism. I was familiar enough with the disorder, having written a series of articles in the early nineties about it. Charles seemed to have some of the red flags going for him, but not all of them. For one thing he was always extremely affectionate and easily made eye contact with everyone he encountered. Sometimes he would look so deeply into a stranger’s eyes that they would be taken aback as if he had crossed an invisible boundary, had invaded a personal space. A woman behind us at the checkout counter in Ukrop’s once said to me, “What he looking at?” 

I considered her question. “You,” I said, looking into her eyes. 

“Well he shouldn’t look so close,” this woman said.

“That’s his way,” I told her, as she gathered her change, keeping her face down, away from my inquisitive child.

Charles’ Sign Language

When he was about three and a half he began seeing a speech therapist, and the results were palpable almost immediately. I had been watching him very closely, would spend hours in the evening reading to him, sometimes as many as twenty children’s books at a setting. He followed the words closely, was insistent on looking at the accompanying pictures and what’s more he could remember the plot lines and would ask questions about the characters.

One Sunday afternoon in the spring, when Catherine was off with her mother, Charles and I sat on the living room floor and talked. I asked him what he meant when he used his hands. I’d always assumed these were just random motions. Boy, was I wrong. A splayed hand held upward meant “tree”; a splayed hand held downward meant “bird”. A fist with the thumb protruding was the symbol for “truck”. The fingers of his left hand drawn rapidly across is right wrist meant “running”. He went on and on for hours, explaining in detail what every hand movement meant. I listened and made notes and rudimentary drawings. When it was all over—about five hours later—I had 218 separate hand symbols describing 218 different words. I was amazed and relieved.

A week later I met with two social workers at the child development center Charles attended at the time. They had been observing Charles—for a total of thirty minutes, I later learned—and had come up with a preliminary diagnosis. I waited. “We believe Charles has high functioning autism,” one of the women told me. “Or Asperberger’s syndrome,” said the other. For a moment, I was speechless.

At Holton Elementary

Later, I took Charles to see Dr. Pasquale Accardo at Children’s Hospital. He spent well over an hour with my son, putting him through a battery of tests, asking him scores of questions. At the end of it all he told me Charles had clearly fallen under the rather wide reach of the autism umbrella, but at its very edge. He might also have Attention Deficit Disorder. Charles, it turned out, had the intellect of someone twice his age, but didn’t have the ability to express his thoughts and feelings.

Since that time, Charles has improved by leaps and bounds, and progress is a daily event. He speaks as fluently as any six-year old, and can create a narrative better than someone twice his age. He is interested in everything, excels at astronomy and easily memorizes lyrics to songs. He writes his name, is learning to read, does well in math and currently attends Holton Elementary where his teachers, Mr. Gay and Mrs. Clark, are the best I have ever encountered. Charles is one of the lucky kids because autism can be an absolutely devastating disorder, severely limiting a child’s chance of independence.

A Mysterious Disorder

The main symptoms of autism are deficits in sociability, reciprocal verbal and nonverbal communications, and the range of a child’s interests and activities. 

In the most severe cases, some kids with autism have verbal auditory agnosia, also called word deafness. It’s almost impossible for these children to decode the rapid acoustic stimuli that characterizes human speech. Others, less severely affected, may have better comprehension than expression. Still others develop fluent, clear speech as they mature, particularly if they receive speech therapy as an early intervention.

Autism was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital in Baltimore. A year later a scientist in Germany described a similar disorder that bears his name—Asperger’s syndrome. Both doctors studied children whose speech was notable for its stilted quality and peculiar vocabulary, even those with average or superior intelligence.

So for more than 60 years now, doctors and scientists alike have known what autism is, kind of, sort of. They know some of the major brain areas that seem to be implicated in autism—the basal ganglia, the hippocampus, the amygdale, the brain stem, the corpus callosum and the cerebellum. They know the incidence of autism has risen exponentially over the past 15 years. Today one in 150 children is diagnosed with the disorder, and males are four times more likely to have it than females. Researchers highly suspect that autism is genetic in nature. There have been theories as to why we have seen such a dramatic increase in autism. Some believe autism is caused or triggered by early exposure to thimerosal, a mercury-based preservative used in vaccines and immune globulin preparations. But this has not been proven conclusively. Others think by eliminating casein and gluten from the diet an autistic child’s behavior seems to change. To date there is no hard scientific evidence to back this claim. 

With The Ledford Family

I recently visited Barbara Ledford in her West End home. Barbara and her husband, Robert, have three children—twins Kyle and Kaitlyn, nine-years old; and a son, Carter, 12, who has autism.

As a little one Carter was developing “normally”. He started walking around the time of his first birthday; he was interested in his environment and seemed to listen to every word spoken to him. When he was about 15 months old, Carter received a series of vaccination shots simultaneously—an MMR, and HIB among them. At this time he was already talking, putting words together, saying simple things like, “Go home,” “Light turn off”, “Stop sign,” “Mommy,” “Daddy,” and so on. 

All at once, a short time after Carter received the vaccines, he appeared to shut down, as if someone had flipped a switch. Things declined steadily. “There was no history of autism in our family,” says Barbara. “It came out of the clear blue.”

By Carter’s second birthday the Ledfords began noticing more and more odd behaviors. Their son had become obsessed with turning the lights off and on, shutting and opening doors and instead of playing with toys he would carefully examine their component parts. Wheels fascinated him.

Something Is Not Right

“I mentioned these things to our pediatrician and he just poopooed me,” Barbara recalls. “He said, ‘Toddlers are weird – that’s the just the way they are – it’s typical for him when he’s gaining motor skills to have speech slowed down- I wouldn’t worry about it.’ I didn’t want to worry about it. But I knew something wasn’t quite working.”

Barbara, a licensed clinical social worker who was in private practice at the time, persisted. “By the time of Carter’s third birthday I forced my pediatrician to give us a referral to get tested,” she says. They took their son to see Dr. Mary Megson, a developmental pediatrician at Children’s Hospital. At the time, Barbara was fragile, six months pregnant with her twins, and Dr. Megson did not diagnose Carter as autistic.

“Actually I look back on it and we are very grateful that she didn’t diagnose Carter because I don’t think I was ready to deal with that,” says Barbara. “It would be so overwhelming.” Eventually Carter was diagnosed with autism.

“The weird thing was he never lost his speech completely,” according to Barbara. “Some kids don’t have any speech at all. He met all the other symptoms. Except, you know, they say kids with autism are so aloof – they don’t like to be touched, don’t want interaction – he’s not like that. He very much likes interaction and contact.”

To this day Barbara believes wholeheartedly that her oldest son was born normal and that the series of vaccines he received at 15 months triggered his autism. “I think that back then, especially, the vaccine schedule was too intense, too soon for little babies’ and toddlers’ immune systems to deal with,” she says. “Now, I don’t think that the vaccine caused Carter’s autism completely. Obviously, there’s a genetic predisposition.”

Diagnosis: Autism

When her son was three and a half, Barbara took him to the Kluge Center at University of Virginia to see Dr. Susan Anderson. “She was the one who had the guts to say he’s autistic,” Barbara says. “My babies were four months old then and finally starting to sleep through the night and so I felt like I could handle it and she talked to me about ABA – applied behavioral analysis.”

Behavior analysis is a scientific approach to understanding behavior and how it is affected by the environment. In a nutshell, ABA uses the tactic of rewards for positive behavior, and it seems to be an effective tool in the treatment of autism.

“We started ABA therapy right after we got back from Charlottesville,” Barbara tells me. “When we got home we looked up and found a therapist who came out to our house, evaluated Carter and set up a home program, trained me and my mother-in-law and my sister-in-law to start working with him in the home. It’s basically a way of teaching kids through repetition. Back then, when he was three and a half, it was a lot about having him to just be willing to be in our world for a period of time.”

Learning Through Repitition

The family dog, a chocolate lab, starts barking on the back deck of the Ledford home. He’s heralding the arrival of Carter, who is just back from the Sarah Dooley Center for Autism at St. Joseph’s Villa. He’s a tall boy, with headphones clamped to his ears and he sways to the music of the portable CD player he holds in his hands. He uses the bathroom, grabs a drink from the refrigerator then sits back on the couch and flips on the TV, and watches PBS Kids. In the background I hear the familiar voice of Arthur, who is an aardvark. 

“You don’t teach a typical kid to look at you,” Barbara continues. I like the way she uses typical instead of normal. She’s a powerful woman and has spent years familiarizing herself with autism and its treatment and possible causes. She is a rock, unmovable, fixed, firmly planted, her objective clear. She is a force of nature, the sort of woman you admire in an instant. “That’s how he learned everything,” she says. “Directions. Putting on his pants, going to the bathroom, washing his hands—all of that – through a series of repetition. It takes a very long time, and we are still working on reading.”

She looks at a photograph of her son that was taken when he was four or five. His eyes avert the camera. She considers her son’s prospects, where he will be ten years from now. “My goal for him is that when he graduates when he’s 21 he will be functionally literate, reading at a third grade level,” she says. “All I want him to do is be able to read a grocery list – very simple things.”

The Dark Years

Barbara remembers all too clearly how it was after the initial diagnosis. She refers to that time as the dark years. “It was horrible in that when you are given that diagnosis – you have a very small window,” she says. “You’ve got to do everything you can in the window. Once he hits five or six his brain won’t be as flexible as it is now and he won’t be able to learn. And so I remember every night putting him to bed and putting the babies to bed and thinking, ‘Oh my God, did I do everything I could have done today?’ I was worn out, stick-a-fork-in-me exhausted, and I still had this perpetual worry. It was horrible, horrible.”

One of the most striking things about autism, and perhaps one of the reasons it is sometimes unbearable for parents, is that the parents do not know what is going on inside their child, what he is thinking or seeing or feeling or hearing, because the child is not able to communicate these things. “When he is in his routine I wonder sometimes what he thinks going through his daily routine,” says Barbara. “I know it’s comforting to him because he likes routine. Is he in there saying, ‘Why are we doing this again?’, or ‘Would you just leave me alone I’m having a really bad day and I don’t feel like fooling with you?’ When I put him to bed at night –and we have a routine, say prayers and a bedtime song – sometimes if we’ve had a really hard day I will say Carter, ‘I don’t know what you’re thinking, but I hope you know above all else how much you’re loved.’ He doesn’t say anything. But he’s listening.”

Early Intervention

These days more people than ever before are listening for symptoms of autism, from pediatricians to teachers and parents. That may be one reason for the dramatic rise in the number of cases of autism: People may simply be more vigilant in having the disorder properly diagnosed.

“Autism back when Carter was diagnosed wasn’t talked about,” Barbara says. “They’d give an hour of training to doctors. We didn’t get any training in my master’s program at VCU. We got all kinds of training on bipolar and schizophrenia, but not on autism.”

Barbara believes that even if a parent isn’t altogether certain that her child has autism, she should seek aggressive, early intervention. “I think that because people are more aware of it people are more likely to say, ‘I think he’s on the spectrum and want to send him someplace to get an intervention,’” she says. “I’m all about that. I have seen children who have been diagnosed early as autistic, get the proper intervention, then lose that diagnosis and become mainstreamed. Were they truly autistic? I don’t really care. Thank God they’re better and thank God they got the intervention.” She mentions her own suspicions about her son a full year and a half before the proper diagnosis was made. “I can’t make up the year that we lost between when I knew that something was not right, at the time I was placated,” says Barbara.

Inadequacies In Programs

As soon as the diagnosis was made, Barbara immediately took action to help her child, first by starting a home program. “And just about the time I was about to have a nervous breakdown because I was working so hard with no break,” she remembers. “Over in Northside off Chamberlayne at Bellevue there was a pilot program starting up that would later become the Faison School. That was in November of 1999 and Carter was one of the four kids in the program.”

For a time after that he attended Gayton Elementary School. “By the end of first grade it became clear that there was too much of a difference between where he was and where the kids were and so I chose to have him go to Holliday Elementary School in Lakeside,” Barbara says. “At the time there was an autism room and an autism program run by Terra Balla, who is now at Deep Run High School. She was fantastic, a great teacher.” He remained at Holliday until fourth grade, when it became apparent that he would no longer have the one-on-one attention he needed. “They (Henrico County) were unwilling to provide adequate training,” says Barbara. “So what happened was they had folks in there with not adequate training who were thinking they were doing it right and they were not and what they were doing was increasing Carter’s anxiety. He was getting incredibly frustrated.”

The Sarah Dooley Center

Barbara would not back down. She kept insisting that her son receive the sort of ABA education he needed. Henrico ultimately recommended the Sarah Dooley Center for Autism at St. Joseph’s Villa. “Now I had heard about the Dooley School because I knew the Virginia Autism Center,” she says. “I knew the Center had come in to St. Joe’s and were revamping that school to make it all ABA-based, which was tremendous. I am so very happy to be with them. And he’s still there. Carter has been there since November 2005, and they’re meeting his needs.”

In the other room, Carter is still watching TV as his brother and sister arrive home. Kyle runs off to do some skateboarding while Kaitlyn joins her other brother. 

Barbara thinks of her eldest son’s future. “I have a good friend whose daughter’s in a home, but they’re like four or five people in the home and they’re all girls,” she says. “And they work with a houseparent, work on meal planning, cooking meals and cleaning up. They function as a family in a home. I would love to see Carter be a part of that. He can’t live with us forever; we’re going to die. I would like to see him be someplace before I die.”

At night, sometimes, I will look at the faces of my children in slumber. I always did that with my daughter, and now I do it with my son, nightly. I see his face, so smooth and perfect, his eyes shut against the world, mouth open, head resting in the cradle of the pillow, peaceful, content. Some nights as he sleeps and dreams he will laugh. I think of words Barbara speaks to her son, even when he cannot hear them. “I love you with all my heart and soul,” I say to my son. There are times that he rouses briefly from his sleep and says, with his eyes still shut, “I love you too Daddy.”