Mateo DelPrete is dancing on the dining room table.
Elesia Dixon, a Notre Dame senior psychology major, interrupts a conversation with the 5-year-old’s mother and calmly lifts the boy down, but moments later Mateo has scrambled back atop the table. He’s frustrated this morning because the Popsicle he successfully clamored for was orange, not the color he wanted. Neither his tutor nor his mother knew what color he preferred, because Mateo often doesn’t communicate in words.
Mateo is an autistic child, and Dixon has come to his home today in a suburb east of Notre Dame to lead him through a set of exercises designed to teach him, over time, how to ask for a Popsicle rather than opening the refrigerator and screaming until he gets one. A student in psychology Professor Thomas L. Whitman’s autism class at Notre Dame, Dixon spends two-and-a-half hours a week working with Mateo in his home, patiently leading him through the tailored steps of a program designed to modify his disabilities.
Autism is not retardation or mental illness or a disease. It’s one of a spectrum of disabilities that disrupt the way children develop. For most infants, the developmental path starts with raising their heads, then sitting up, then crawling, standing, walking and eventually getting into the pots and pans. As early as 3 months they pay attention to conversations and begin to repeat some consonant and vowel sounds. Somewhere between 9 months and a year, they’re saying a few words and responding to “no.” In their first year children express a range of emotions and show affection for parents and others. They like to play and use play as a way to explore their environments. In their second year kids enjoy looking at picture books, respond to directions and move to music.
These developmental stages don’t necessarily occur in lockstep, and there’s a lot of variation in timing even among normal children. With autistic children, however, the variations are much more pronounced and merge into delays between the ages of 2 and 3 that are impossible to ignore. “Early on,” says Whitman, “the kind of thing you’d be looking at is a child who won’t respond to their name and doesn’t seem to be tracking the social environment at all.” Some autistic children don’t interact with parents or siblings the way other children do and may not sit or stand on schedule. In the tactile area, some autistic children don’t like to be held or touched and may avoid eye contact. Some indulge in repetitive behaviors, such as rocking or head-banging.
The most common characteristics of autism are language delays and deficiencies. In addition to being slow to use words, autistic children may also have trouble deciphering other people’s speech and the accompanying nonverbal facial expressions. Mateo can use the word "Pop"—it’s one of the 10 words or so that make up his entire vocabulary—but it can mean, variously, Popsicle, Pop-Tart or popcorn. “Ball” is another of his words, because playing with balls is one of Mateo’s favorite things. His vocabulary also includes mom, open, chip, up, go and cracker. Such simple tasks as sorting items by color or stacking similar objects are difficult for him, and concentrating on a given task can be impossible.
On a late-summer morning, Elesia Dixon is ready to start Mateo’s tutoring session, but Mateo has other ideas: He’d rather keep playing energetically with his ball. When entreaties fail, Elesia carries him bodily to the table in the basement that’s set aside exclusively for these sessions. She attempts to take advantage of his fixation with the ball—"Say ‘ball,’ Mateo"—but the ploy doesn’t work. He bolts from his chair, and she has to fetch him once again.
When things settle down, the morning’s first exercise involves stacking blocks. “Build a tower,” says Elesia, showing him how to put one block atop another. Mateo builds a tower and earns an enthusiastic “Good job building a tower, Mateo. Let’s do it again.”
A little later she places two plastic blocks, two toy dinosaurs, two doll’s bottles and two toy tanks on his lesson table. “Put the block with the block,” she requests, but Mateo jumps off his chair and starts to run across the room. Elesia catches him by the shirt and steers him back to his chair, where the next task involves matching colors.
The lessons continue for the better part of an hour before the boy is freed to go jump on the trampoline in the next room, a thing he likes almost as much as playing ball. The point of the tutoring is to teach Mateo how to interact with his environment through Applied Behavior Analysis (ABA), a behavior-modification strategy that’s also known as behavior education or pivotal response training. “Essentially,” Whitman says, “it’s a structured program that has an educational curriculum. It’s very language-based because one of the main deficiencies of these children is language. Once you get language going, a lot of other kinds of development occurs.”
Causes and incidence of autism
Autism was once thought to be a psychological disorder caused by emotionally cold parenting. For a while it was confused with mental retardation and even linked to schizophrenia. The understanding that it’s a developmental disorder is more recent. It is now considered to be one of a series of disabilities that lie along a spectrum known as Pervasive Developmental Disorders, or PDDs. Those disorders are defined by the American Psychiatric Association as “characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behaviors, interests and activities.”
Although its causes are not yet clear, they appear to be both genetic and environmental. “A lot of medical research is going on, and we’re learning more and more about the brain structure and the genetic possibilities,” says Whitman. Somewhere between 15 and 20 genes are thought to be involved, however, and he doesn’t foresee a medical solution to the disability until research has moved much farther along.
Some believe the incidence of autism is increasing—the Autism Society of America estimates it occurs in one out of every 150 individuals—but others suggest it’s merely better diagnosed. Some researchers blame environmental toxins, food additives or industrial pollutants in the air or water. Other environmental causes could be alcohol, rubella or AIDS in the prenatal period; prematurity or low birth weight in the newborn stage; and head injury, poverty, parental abuse or diseases such as encephalitis in the postnatal years.
There has been considerable interest recently in a theory that the measles-mumps-rubella (MMR) vaccine might somehow trigger autism. Some parents believe their child first manifested symptoms after being vaccinated. Whitman is skeptical about the theory, although he admits its proponents have catalyzed the scientific community and the political community.
Films such as Rain Man and Mercury Rising sparked a lot of public interest in the savant aspects that some autistic persons exhibit. It is true that a few individuals demonstrate amazing abilities—things like having prodigious calculation skills, or reproducing a complex piece of music after a single hearing, or being able to tell what day of the week May 12 fell on in 1978. But autistic savants are much rarer than popular literature might suggest.
The developmental disabilities spectrum is broad, and individuals can range from profoundly handicapped to high functioning. Toward the upper end of the range is Asperger Syndrome, which shares many of the characteristics of autism but with less pronounced language deficiencies. Some professionals feel Asperger Syndrome is merely high-functioning autism.
Joe Sieber, a 14-year-old high school student in the South Bend-Mishawaka area who’s been diagnosed with Asperger, didn’t speak until he was 3 years old, and then he started speaking in full sentences. His father, Gary ‘81, a radio news director and adjunct faculty member at Notre Dame, likes to tell of the day when Joe was in first grade and accompanied his father to a parent-teacher conference. As the teacher was telling Sieber his son had a reading problem, the first grader was sitting in the classroom absorbed in a book he had picked off the shelf. “Joe is not able to read our materials,” said the teacher. “I know he likes to sit back there and flip pages and look at the pictures, but . . .” She shook her head in commiseration.
Sieber asked his son to bring him the book about animals he’d been looking at. “I opened the book to a page without pictures,” Sieber recalls. "I pointed and said, ’What’s that word?’ Joe said, mustelidae. I said, ‘What is that?’ He said, ‘The mustelidae would include the skunk, the badger and the wolverine.’ I asked him, ‘What are the defining characteristic of mustelidae?’ He said, ‘They have musk glands and they’re carnivores.‘
"The teacher’s jaw was on the table."
Joe is no savant, but he does have a photographic memory for things that interest him. At the age of 3 he learned the alphabet by memorizing the names of dinosaurs alphabetically. “A” was for allosaurus, “B” was for brachiosaurus, and so on. He knew not only the Latin names, he also knew their dietary habits and whether they were from the Cretaceous period or the Jurassic. He’s a big fan of The Simpsons, and he can accurately say what actor was the voice of just about any character on any episode in the series.
After Joe was diagnosed between third and fourth grade with Asperger, he spent the next five years in Tom Whitman’s ABA program. Unlike children further down the spectrum, such as Mateo DelPrete, Joe’s needs were directed more toward socialization than language. His “tutors” became more like older friends who took him to pizza parties on the Notre Dame campus or to hang out with their friends. Over the years he’s been exposed to social situations he wouldn’t otherwise have experienced.
While he’s still self-conscious and shy, and it’s tough for him to make eye contact, he tries. His social skills “are not great, but they’ve improved a great deal,” says his father. “Joe can converse on an intellectual level on some subjects, but he doesn’t follow that the whole thing about conversation is changing topics. If we’re talking about The Simpsons, he’ll stay on The Simpsons all night; when the subject tends to change, he sort of loses track.”
Last August Joe entered high school and handled his first day, in his father’s words, “better than his mother and I did.” Since then he’s had As and Bs and only one C. That was in band.
Getting a diagnosis
Darby Sweeney is 5 years old, and he knows his name and his mother’s name and his address and his phone number. And just recently, when Myra Sweeney asked her son to run upstairs and bring down his shoes and socks, he did it. For most 5-year-olds, these are not exceptional accomplishments. But Darby is autistic, and for him, understanding and carrying out a simple request is a major victory.
What Darby loves most are things that spin. Give him a penny, and he’ll set it spinning over and over on the handiest flat surface. Sometimes he spins his own body, and he can keep it up for 20 minutes without getting dizzy. Hand him his favorite toy helicopter, and he’ll spin the blades tirelessly. “It’s a calming mechanism,” says Darby’s mother. “If he’s having a rough time we give him the helicopter.”
Concentration on a repetitive task is typical of autistic children. It is believed to be their way of coping with a world they find chaotic because of heightened sensitivity to sensory inputs—light, touch, smells and especially noise. Temple Grandin, an associate professor at Colorado State University and an autistic adult, has written about this aspect of the disability: “My hearing is like having a sound amplifier set on maximum loudness. My ears are like a microphone that picks up and amplifies sound. I have two choices: 1) turn my ears on and get deluged with sound or 2) shut my ears off. Mother told me that sometimes I acted like I was deaf.”
Darby doesn’t manifest all of the earmarks of autism; few autistics do. He plays well with his five cousins, for example, whereas many autistic children prefer to play by themselves, even in the midst of a group. He makes eye contact easily. He likes to play with his 2-year-old brother, Aidan, although he was upset when Aidan was born, sometimes throwing himself at the TV and screaming. Now though, says Myra Sweeney, “Aidan is the best thing that’s happened to Darby, because Aidan is developing pretty typically. They play together perfectly, and Aidan wants to be around Darby.”
When Darby turned 2, his parents noticed he was lagging behind other children his age in language development. “He wasn’t using sentences; he was always babbling,” his mother recalls. “We’d take him to pediatricians, and they’d say ’It’s probably just a speech delay.’” One of the frustrations parents of autistic children face is getting a firm diagnosis. Many pediatricians are not trained to spot telltale signs, and those who are tend to be cautious about making a premature diagnosis. Educators, by the same token, are reluctant to give preschool children labels they might never be able to outgrow.
Tom Whitman thinks it’s critical to diagnose developmentally delayed children at the earliest possible age, but he admits that before the age of 3 delays in social interaction and communication can be difficult to assess: “Parents often report being told by physicians that their child’s development, while perhaps somewhat delayed, is not that unusual.” Many are initially diagnosed with Attention Deficit Hyperactivity Disorder, some of whose symptoms can suggest autism.
In Darby’s case, speech therapy wasn’t helping his language skills, and the Sweeneys wanted more definite answers. Eventually a board-certified pediatric neuropsychologist told them: “Call it what you want, Darby is on the autistic spectrum.”
After one year in the ABA program, Darby is now repeating words and even using a few spontaneously. He recognizes colors and shapes, and he’s good with flash cards. “A lot of his answers are rehearsed,” Myra notes, “but he seems to be picking up things in the environment a lot.” She has one word for the progress Darby has made in a year: incredible.
There are a variety of ways of dealing with autistic children. Some are biomedical but more are educational. Behavior education works best when the target behaviors are carefully selected and defined, when the training technique involves prompting and reinforcement, and when the modified behaviors carry over into appropriate social settings. It’s not enough for a child to learn new words if she can’t use them in day-to-day life. Most importantly, such education works best when it’s started early in the child’s life.
Applied Behavior Analysis is an educational approach with a substantial history of research and evaluation behind it. Teams of trained Notre Dame students go into children’s homes for 20 to as much as 40 hours a week. They work with the child in a designated room that’s associated with learning, and patiently take him through a series of exercises that expand his verbal skills and mental agility. Some of the exercises are designed to improve social skills.
Says Molly Ferguson, a senior anthropology major who assists Whitman in the administration of the ABA program and the training of tutors, “Unless something else is going on, there is nothing autistic children can’t learn. But many [classroom] teachers don’t know what to do with these children; they’re bouncing off the walls. Teachers are afraid of ‘forcing’ these children to stop their disruptive behavior.”
ABA tutors are trained in techniques that encourage a learning environment. On a typical visit to Darby Sweeney’s home, Molly takes the boy to his “learning room” and gentles him into his chair. The first lesson deals with computational skills, and Darby is presented with 11 Popsicle sticks. She asks him to count the sticks, but he counts only to 10. She has him try again. When he makes it to 11, she lavishes reinforcing praise on him and gives him a penny to spin.
Next comes a pronoun exercise. Molly hands the boy a cup and picks up a card for herself. “Darby, who has the cup?” she asks, then “Who has the card?” He gets the “I” and the “you” right, and she showers him with more praise. From there the session moves to language skills: “What rhymes with hose?” “Nose.” “Good job, Darby.” Finally, there’s a session on reading people’s emotional states, something autistic people often find tricky. Molly holds up a card showing a smiling face and asks: “How do I feel, Darby?” “Happy.” Then a frowning face: “How do I feel?” “Sad.”
Most children, especially young children, learn almost in spite of themselves, but children on the autism spectrum need to be prompted to learn—and reinforced when they succeed. That’s what ABA does for them.
Families feel the strain
For Jody and Jere O’Dell, taking their four children to restaurants can be upsetting. “Sometimes we get dirty looks,” Jody says, “because the boys are freaking out, and there’s no way to explain to other diners. After a while you just think, well, lady, you couldn’t do it any better than I’m doing it right now.”
What she isn’t able to explain in those situations is that two of her children, twins Ezra and Jona, are autistic.
The twins were born prematurely nine years ago. At the age of 1, Ezra, the more significantly impaired of the two, was not yet crawling, and he didn’t sit up until 14 months. He avoided eye contact. Neither of the boys, recalls their mother, “did the lip play or made the sounds that young children typically do, blowing raspberries and saying ba-ba-ba-ba. And they never said mommy or daddy.”
The O’Dells vividly remember a family Christmas when the boys were babies. Ezra reacted to the bustle and noise by crying inconsolably. His parents took him into a back bedroom to try to soothe him, but he wouldn’t calm down. Says Ezra’s father, Jere: “We had to turn all the lights off and put a blanket over his head and rock him back and forth for an hour and a half.”
The O’Dells first began hearing the word autism when the twins entered a school program for special-needs kids at the age of 3. But some educators advised them to resist premature labeling. “We were torn,” recalls Jody. “Do we accept this label? What does that mean? And then there’s the whole emotion of, my gosh, I have a child with really significant needs. Once I came to grips with the fact that the boys had autism, then there’s this grief process. I cried for 18 months.”
Autism is hard on families. They have to deal with marital stress, sibling adjustments, parenting challenges and financial demands that their friends don’t face. The ABA program places additional demands on parents. Before Tom Whitman agrees to enroll a child, he insists that the family have a structured program in place and be willing to have a team of up to five students coming into their home each week. For the program to work, he says, it has to be something that the parents invest themselves in, believe in and are able to deliver.
His course in autism was born a decade ago when families in the South Bend-Mishawaka community began asking the University’s psychology department for student volunteers to work with their disabled children, some of whom were autistic. “I thought it would be a good idea to start building courses around the students’ experience,” Whitman says, “so I developed courses in autism and early intervention.” Since then, hundreds of students have taken the autism course, despite its heavy time demands. Half the course is taught in the classroom, but there’s also a 50-hour practicum, with students fanning out to clients’ homes twice a week.
Whitman’s program
Five years ago Katy Lindenman gave birth to triplets in her 30th week of pregnancy. Two of the three little girls, Hannah and Mary Kate, thrived, but Ginny, the third, gave her parents cause for worry even before she left the hospital. “We had some concerns because her head seemed large.”
An Indiana program called First Steps provides early intervention services for infants and toddlers with developmental delays or disabilities. Lindenman, a former school teacher, jumped at the chance to have professional helpers from that program in her home. It was soon clear that Ginny was not keeping up with her sisters. “We noticed the other two doing certain things and a month later Ginny wasn’t,” Katy says. “And two months after that she still wasn’t.”
Ginny was 4 when she was diagnosed as autistic. That was a year ago. Now Ginny accompanies Hannah and “Kate-Kate,” as she calls Mary Kate, to preschool. Her sisters show no developmental delays, says their mother. “They’re excellent with Ginny and they’re very good little teachers.”
On a day early in this school year, Notre Dame senior Justin Wilson, one of three therapists from Whitman’s class assigned to take Ginny through the Applied Behavior Analyhsis exercises, is watching the girl respond to a visitor she’s never seen before. Sitting on her mother’s lap, Ginny gazes intently at the stranger and says “Hi” and then “Bye” repeatedly. Like many autistic children, Ginny finds changes in routine threatening, and she’s uneasy with people she doesn’t know. Her mother reassures her, “I’m gonna stay right here.” Ginny also looks to Wilson for reassurance; he’s not a stranger and his presence calms her.
Wilson is a psychology major and one of three Notre Dame students who spend a total of 12 hours a week with Ginny; her parents and her preschool teachers contribute another eight to 10 hours of therapy per week. Some days, Wilson says, Ginny cooperates, but some days she digs in her heels and resists. Those days can leave him a little drained, but he’s more often excited by the advances he sees her make from week to week. One day late in the fall semester, Wilson recalls with a fond smile, “we finished a session early, and I joined the three girls in some marching.” It’s such small victories that keep him encouraged.
Ginny has been in the ABA program less than a year, but her mother has seen a lot of small victories: “When she went back to school last fall, people were like, oh, my gosh! And playing with her sisters and engaging in pretend play, there’s a huge difference. She used to just go off by herself and be quiet. Now she’s putting her babies to bed and feeding them and walking them and taking them to school.”
Although he’s confident that educational intervention helps autistic children learn to cope with the world in ways they otherwise wouldn’t, Whitman cautions the families he works with not to expect too much. The long-term outlook for autistic children is not historically encouraging. While some advocates of the ABA approach believe it can normalize autistic children, Whitman insists few will grow up to be entirely free of the disorder’s heritage. “Even if they get to the point where they have normal IQ and pretty normal language, they’re always a little different from other children.”
Still, the prognosis for such children is not totally bleak. Ten to 25 percent of today’s autistic children can look forward to being able to function independently or with minimal support when they grow up. And research now under way makes it likely that diagnostic procedures will improve, with the prospect that those numbers will rise. To maximize the potential of every child with autism, Whitman says, intervention should begin as early as possible, be individualized to the child’s condition, and continue after the child reaches school age through close coordination between school and home.
He expects research to turn up earlier behavioral markers pointing to autism, and perhaps medical markers as well, most likely at the genetic or biochemical levels. These advances will not necessarily lead to medical treatment but rather to improved diagnosis and perhaps more effective medical interventions for symptom management. Research is also expected to refine educational intervention techniques.
For some, though, the outlook does not point to independence. Jody O’Dell tries to look at the future dispassionately. “Ezra,” she says, “probably always will live with us.”
* * *Walt Collins is a former editor of this magazine and an adjunct associate professor of American studies at the University.