Autism isn't just a young child's disorder any longer.
This growing medical problem, first noticed, at best, sometime in the 1980s in the United States, has now become commonplace.
And the early generations of young children to be diagnosed as autistic aren't children any longer. Many are teens in puberty. Some are young adults.
Autistic children can count on special education programs offered in public schools to help them adjust to some of the problems brought about by this disorder.
But a growing number of parents today are becoming desperate. Their austistic children, now grown, have no place to go for help.
"We have so much in place for early intervention compared to how little we have in the way of laws or money or any kind of support for these kinds of individuals," said Dr. Swedo, the daughter of Edis Anderson of Vermillion and the late Sidney E. Anderson.
Autism Speaks and other support groups, she said, want autism to be labeled an epidemic in this country.
"I don't think we have the epidemiological data to support that, but we certainly have the public health repercussions coming down," Dr. Swedo said. "It's huge. The families are more worried about that than possibly anything."
Typically, parents of autistic children need some time to get over the shock of learning that they must deal with a lifelong health care problem that has no cure.
"The first thing that starts needing to be dealt with is, 'How do we protect our son? What is going to happen to him when we aren't here to provide for him any more?' "
Dr. Swedo's research is focused mainly on very young autistic children. She hasn't delved into the possibilities of whether behavioral or drug treatments that are commonly shown to help youngsters may provide similar benefits to adults.
"One of the things that people tend to do is observe that autistic individuals tend to plateau and don't make any more progress," she said. Frequently, intervention is aimed more at helping them acquire life skills in a sheltered workshop. I don't think
anyone has directly addressed the questions of whether these impairments be lessened for these individuals once they get older."
Dr. Swedo is part of a clinical investigation team at the National Institute of Mental Health at Bethesda, MD.
"We have two categories of study: In one, we try to identify the syndromes within the broad spectrum of autism in hopes of getting closer to the etiology," she said. "One of our biggest studies is looking at children with regressive autism versus more typical autism. We're looking to see if the kids in the regressive group have immunity abnormalities or specific genetic defects that explain why they are regressive."
Dr. Swedo is also involved in a second set of studies involving treatment trials of behavior therapy in combination with oxytocin therapy. Other drug therapies also are being tested, she said.
Dr. Swedo admits that there is no shortage of potential reasons for the increasing number of autistic cases.
They range from heavy metals in early childhood vaccinations back in the 1980s, to the effects of higher strength ultrasounds commonly used 25 years ago on babies while still in the womb.
So far, however, research hasn't yet pinpointed autism's cause.
Tests on animals in Europe indicate that such ultrasounds may have an effect, but there's no proof that it's a potential cause of autism in humans.
Dr. Swedo's research has lead her to believe that a combination of genetics and environmental factors are likely the leading causes of the disorder.
"So many things have changed in our environment in the last 15 to 20 years, when it looks like the number of cases have really started skyrocketing," she said. "The genes haven't changed during that period of time. One of the reasons we're doing the chelation study is we're impressed with the number of people who think that there is a susceptibility to mercury and heavy metal toxins that play a role. It's hard to imagine how it might have affected that group of people."
Today, we live in a world where aspartame has replaced saccharin.
"Aspartame says right on the label, 'Not for use by PKU deficient individuals," Dr. Swedo said. "PKU is crucial to brain development. What if its interacts somehow with the developing brain?
"Everything in our environment has changed," she said.