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.
(April 2006)
