A few decades ago, people probably would have
said kids like Ryan Massey and Eddie Scheuplein
were just odd. Or difficult.
Both boys are bright. But Ryan, 11, is hyper and
prone to angry outbursts, sometimes trying to
strangle another kid in his class who annoys him.
Eddie, 7, has a strange habit of sticking his
shirt in his mouth and sucking on it.
Both were diagnosed with a form of autism. And
it's partly because of children like them that
autism appears to be skyrocketing: In the latest
estimate, as many as one in 150 children have
some form of this disorder. Groups advocating
more research money call autism "the fastest-growing
developmental disability in the United States."
Indeed, doctors are concerned there are even more
cases out there, unrecognized: The American Academy
of Pediatrics last week stressed the importance
of screening every kid - twice - for autism by
But many experts believe these unsociable behaviors
were just about as common 30 or 40 years ago.
The recent explosion of cases appears to be mostly
caused by a surge in special education services
for autistic children, and by a corresponding
shift in what doctors call autism.
Autism has always been diagnosed by making judgments
about a child's behavior; there are no blood or
biologic tests. For decades, the diagnosis was
given only to kids with severe language and social
impairments and unusual, repetitious behaviors.
Many children with severe autism hit themselves
or others, don't speak and don't make eye contact.
Blake Dees, a 19-year-old from Suwanee, Ga., falls
into that group. For the past eight years, he
has been in a day program with intense services,
but he still doesn't talk, he's not toilet-trained,
and he has a history of trying to eat anything
- even broken glass.
But he's not a typical case.
In the 1990s, the autism umbrella expanded, and
autism is now shorthand for a group of milder,
related conditions, known as "autism spectrum
The spectrum includes Asperger's syndrome and
something called PDD-NOS (for Pervasive Developmental
Disorder-Not Otherwise Specified). Some support
groups report more than half of their families
fall into these categories, but there is no commonly
accepted scientific breakdown.
Gradually, there have been changes in parents'
own perception of autism, the autism services
schools provide, and the care that insurers pay
for, experts say.
Eddie, of Buford, Ga., was initially diagnosed
with obsessive-compulsive disorder, attention
deficit hyperactivity disorder and other conditions.
But the services he got in school were not very
His mother, Michelle, said a diagnosis of autism
brought occupational therapy and other, better
"I do have to admit I almost like the idea
of having the autistic label, at least over the
other labels, because there's more help out there
for you," said Scheuplein.
"The truth is there's a powerful incentive
for physicians and schools to classify children
in a way that gets services," said Dr. Edwin
Trevathan of the U.S. Centers for Disease Control
Many with Asperger's and PDD-NOS succeed in school
and do not - at first glance - have much in common
with children like Blake Dees.
At a recent gathering of families with Asperger's
children in the Atlanta area, parents told almost
comical stories about kids who frequently pick
their noses, douse food in ketchup or wear the
same shirt day after day.
Such a frank, humorous exchange was once a rarity.
Doctors for many years believed in the "refrigerator
mom" theory, which held that autism was the
result of being raised by a cold, unloving mother.
The theory became discredited, but was difficult
to dislodge from the popular conscience.
Even in the early 1980s, some parents were more
comfortable with a diagnosis of mental retardation
than autism, said Trevathan, director of the CDC's
National Center on Birth Defects and Developmental
Today, parents are more likely to cringe at a
diagnosis of mental retardation, which is sometimes
equated to a feeble-mindedness and may obscure
a child's potential.
And increasingly, professionals frown at the term:
The special education journal Mental Retardation
this year changed its name to Intellectual &
The editor said that "mentally retarded"
is becoming passe and demeaning, much like the
terms idiot, imbecile and moron - once used by
doctors to describe varying degrees of mental
In contrast, autism has become culturally acceptable
- and a ticket to a larger range of school services
In 1990, Congress added the word "autism"
as a separate disability category to a federal
law that guarantees special education services,
and Education Department regulations have included
a separate definition of autism since 1992.
Before that, children with autism were counted
under other disabling conditions, such as mental
retardation, said Jim Bradshaw, an education department
The Social Security Administration also broadened
its definition of disability to include spectrum
disorders, like Asperger's.
Something else changed: The development of new
stimulants and other medicines may have encouraged
doctors to make diagnoses with the idea of treating
them with these drugs.
Perception of the size of the problem changed,
Fourteen years ago, only 1 in 10,000 children
were diagnosed with it. Prevalence estimates gradually
rose to the current government estimate of one
That increase has been mirrored in school districts.
Gwinnett County Public Schools - Georgia's largest
school system - had eight classrooms for teaching
autistic youngsters 13 years ago; today there
Some researchers suggest that as autism spectrum
diagnoses have gone up, diagnoses of mild mental
retardation have fallen.
U.S. Department of Education data show that the
number of students with autism rose steadily,
from about 42,500 in 1997 to nearly 225,000 in
2006. Meanwhile, the number of students counted
as mentally retarded declined from about 603,000
to about 523,000.
CDC scientists believe education numbers are misleading,
because they reflect only how kids are categorized
for services. They say there's no clear evidence
doctors are substituting one diagnosis for the
Some parents believe environmental factors - ranging
from a preservative in vaccines to contaminants
in food or water - may be important contributors.
(The last doses of early childhood vaccines containing
the preservative thimerosal expired in 2002, although
some children's flu shots still contain it.)
Dr. Gary Goldstein, scientific adviser to the
national advocacy group Autism Speaks, said the
explanation for the rising autism prevalence is
probably complex. Labeling and diagnosing probably
play a role, as do genetics, but he believes the
increase surpasses those two explanations.
"I'm seeing more children with autism than
I ever would have expected to see," said
Goldstein, who is chief executive of the Kennedy
Krieger Institute, a treatment center for pediatric
developmental disabilities in Baltimore.
Autism Speaks budgets more than $4 million each
year to research the causes of autism, and about
90 percent of that has gone to genetics research.
But organization officials recently have been
talking about changing that mix, and spending
as much as 50 percent of that money on potential
environmental triggers, Goldstein said.
Whether it's because of genes or the environment
(or both), autism has hit the Massey family hard.
Chuck and Julia Massey, of Dacula, Ga., have three
sons with Asperger's.
The youngest, Ryan, was first diagnosed after
he was slow to develop speaking ability. His brothers
- Trevor, 14, and Morgan, 16 - had learning and
behavior problems and were later diagnosed with
All got special education services and were treated
with medications. Morgan has improved, or matured,
or both, and is now a social kid in mainstream
classes at a Gwinnett County high school. Trevor
seems to be making the same transition, his mother
Ryan is the most extreme. He still has uncontrollable
tantrums and must attend an Asperger's-only sixth-grade
classroom that teaches social skills along with
In a recent interview at the family's home, Ryan
acknowledged he still has anger control issues.
One of the three other students in his class is
particularly irritating. Ryan said the way he
reacts is by "grabbing his throat."
But on this night, Ryan was calm. He described
himself as happy, and paced the room telling jokes,
like a nervous stand-up comedian. ("Why didn't
the skeleton go to the party? He didn't have the
guts," he said, eyes fixed on his audience.)
Having three Asperger's boys under one roof has
at times been very intense, Massey said, noting
a replaced dining room window.
Ryan acknowledged it's been educational living
in a house full of Asperger's kids. Asked to name
something he's learned from his brothers, he replied,