Mark Strauss was struck by a comment made several years ago by Temple Grandin, the
Colorado State University professor who has become a leading advocate for
those, like herself, who live with an autism spectrum disorder. She said it
wasn’t until she was 5 years old that she could tell the difference between
dogs and cats—and even then by using a process much different and deliberate
than the way typically functioning children make such distinctions.
"She
taught herself how to do it by realizing that dogs have particular noses and
cats have retractable claws," said Strauss, PhD, professor of psychology and
director of the Infant and Toddler Development Center at the University of
Pittsburgh. “I had been studying the development of these automatically learned
things in babies and it became apparent from Temple Grandin’s comments that she
didn’t have these built-in mechanisms. She had to explicitly teach herself
things that babies automatically learn.”
Dr.
Strauss is among the researchers investigating such developmental differences
as part of the Pittsburgh Early Autism Study, a comprehensive effort to
identify markers of autism in early childhood and gain a deeper understanding
the developmental pathways of autism. Gaining such knowledge has implications
for diagnosing autism earlier and intervening sooner to help children with an
autism spectrum disorder (ASD).
Autism is
a range of complex neurodevelopment disorders with no known cure. The causes of
the disorders are not well understood. Although symptoms vary among those with
autism, common characteristics include social impairments; communication
difficulties; and restricted, repetitive, and stereotyped patterns of behavior.
A Growing Concern
The
number of people diagnosed with an ASD has risen sharply, but the precise
reason why remains unclear. For example, it is not known the extent to which
greater awareness and a broader definition of ASD has contributed to the rise
in prevalence in recent years. One year ago, the U.S. Centers for Disease
Control and Prevention revised its estimate of the prevalence among American
children from 1 in 150 children to 1 in 110 children.
An ASD
diagnosis today is typically made when a child is around 36 months old. Autism
can be diagnosed earlier in children who exhibit multiple and very apparent
deficits in areas such as language, attention, and behavior. The difficulty is
making a reliable early diagnosis among infants and young children experiencing
a deficit in only one or two domains. It’s not uncommon for some children, for
example, to exhibit a language delay early in life that is corrected later.
Research
suggests some children benefit from structured interventions, such as intense
behavior modification therapies. Such interventions, while not a cure for
autism, can be useful in helping children develop more appropriate behaviors
and function better in society. Studies also suggest that the earlier
interventions begin, the better.
Understanding
the subtle early makers of the disorders and the developmental trajectory of
autism symptoms are critical to finding a reliable, accurate tool for early
diagnosis and being able to begin appropriate, well-targeted interventions as
early as possible. At the moment, however, little is known about what is
happening early in the development of children who are later diagnosed with an
ASD.
“Parents
will say they notice something in the first year. But we have no real sense of
what the developmental course is,” said Susan Campbell, PhD, a Pitt professor
of psychology who is the principal investigator of one of three studies in the
project. “A lot of parents will say their child was developing normally until,
say, 18 months and then they started to lose skills. Unless we do these
prospective studies, we won’t have a good handle on whether there are different
subtypes with different developmental patterns, or whether people just weren’t
noticing things before.”
Investigating Early Autism
Autism
research is a relatively young field with the body of evidence consisting
mostly of studies over the past few decades involving older children and
adults.
In their
effort to learn more about autism during the early months of life, researchers
with the Pittsburgh Early Autism Study recruit infants with older siblings who
have been diagnosed with an ASD. Studies indicate there is a genetic component
to autism and it is estimated that 18 percent to 20 percent of infants with an
older sibling with autism will later be diagnosed with an ASD. A sample of
infant siblings of typically developing children is also included in the study.
Researchers
are looking at a range of possible early markers of autism by studying early
cognitive and social development, and also early language and communication
development in studies led by Dr. Strauss, Dr. Campbell, and Jana Iverson, PhD,
an associate professor of psychology at Pitt who has studied aspects of autism
for nearly a decade.
The
Pittsburgh Early Autism Study is affiliated with the University of Pittsburgh’s
Center for Excellence in Autism Research, which is directed by psychiatry and
neurology Professor Nancy Minshew and is one of five such centers funded by the
National Institutes of Health. The researchers are also among 22 investigators
in the Baby Sibling Research Consortium, which is exploring issues related to
early autism in infant populations around the world.
For his
part, Dr. Strauss focuses on cognitive ability, attention, memory, and how
knowledge is developed. Of particular interest is studying how children
perceive faces and facial expressions.
Infants
learn a great deal about their world by observing and interacting with it.
Within the first year of life, they are learning enough about faces to make
fine discriminations among different people, allowing them to recognize, for
example, who is familiar and who is not. “Babies learn faces, expressions, that
dogs—even though they look different from one another—are a different category
than cats,” Dr. Strauss said. “We know babies are learning this by 10 months of
age.”
But, as Temple
Grandin’s comments reveal, children with autism have difficulty doing what
comes automatically to typically functioning infants. Even autistic adults
exhibit similar deficits. Researchers are studying this issue by showing them
movies and pictures and using a device that track what they are looking at, how
long they are looking at it, and how they distribute their attention. In doing
so, they hope to identify when the deficits begin and what type of deficits
they are. In one study, researchers are finding differences at 6 months of age
between the infants whose older siblings have autism and infant siblings of
typically developing children.
“The way
they are paying attention to pictures is different,” said Dr. Strauss. “They
are paying attention to smaller details and they are not seeing holistic
things. That is critically important to children’s early learning because the
way you know, for example, that two different dogs are dogs— that a German
shepherd and a collie are both dogs—is by being able to see their general
shape, not focusing only on the color of the nose or ear.”
Dr.
Campbell is studying early social development, paying particular attention to
the interactions between mother and infant. She studies mothers and children in
several situations during different developmental stages to examine social reciprocity,
pretend play, empathy, and emotion regulation.
When
studying social reciprocity in infancy, Dr. Campbell observes face-to-face
interaction between mothers and their 6-month-old children. For example, she
observes mothers engage their babies in play and notes such things as the
infants’ reactions to exaggerated facial expressions as well as their reactions
when their mothers are asked to be non-responsive. Typically developing
toddlers spontaneously begin to enjoy pretending, something that is difficult
for children with autism. Dr. Campbell is studying the development of pretend
play in these children during their second year.
In
another scenario, she is observing the reaction of children between the ages of
11 and 16 months when they are shown a toy elephant that walks and makes
noises. It’s the kind of toy that typically developing infants would be interested
in, but wary of, and would tend to look to their mothers for cues about whether
to approach it or not.
“We are
looking at the give and take of parent-child interaction and how infants use
mom as they explore the world,” Dr. Campbell said. “The assumption is that the
high-risk infants who are later on going to have a diagnosis (of autism) are
going to make much less use of their mothers as a base for exploring the world,
or as a way of getting information about what is okay to touch.”
Rounding
out the scope of the Pittsburgh Early Autism Study is Dr. Iverson’s work, which
includes investigating of the emergence of communication skills, such as
language and gesturing, beginning with babbling.
The early
markers of autism most consistently reported in research literature are related
to early social communication. Most infants are able to speak a few words by
the age of 18 months and nearly all are able to use gestures of some sort to
communicate their interests, wants, and needs. The exceptions are infants with
an ASD who typically do not communicate at such levels during their first 18
months or do so infrequently.
Dr.
Iverson begins observing children when they are 5 months old. A key aspect of
her work is that she regularly videotapes the children in their homes. “What is
important to us,” said Dr. Strauss, “is that she is getting a diary snapshot,
if you will, of every month of development, which allows us to look at a
variety of things.”
Although
each researcher is investigating separate issues, those issues are often
related. One example is gesture and social interaction.
“One of
the things people talk about with children with autism is they use certain
gestures to get something they want, but they don’t use gestures that children
use for sharing,” said Dr. Campbell. “In my lab, we look at how often children
show mom a toy. Showing is a social gesture. They are showing mom a toy to
share something. Or they point at something interesting as a way to sharing it.
Those are gestures that seem to be delayed in children with autism, which fits
with Jana Iverson’s work.”
Taken
together, their work could reveal a comprehensive profile of early autism that today
remains elusive. Such information would help identify more precise early
markers of autism and perhaps a reliable method of early diagnosis. “There is a
big push now within pediatrics and child psychiatry toward early intervention,”
said Dr. Campbell. “But we don’t really know who to intervene with unless we
can be sure we are picking up the right cues.”
For More Information
Parents
with infants – regardless of whether or not they also have an older child with
autism—can get more information about the project including how to participate
by calling 866-647-3436 or going to www.pitt.edu/~peas