See Things Differently

Autism and Asperger Syndrome in Our Communities

Allison Ijams Sargent writer

“If you go looking for a problem, you’re going to find a problem.” This was the admonishment that Wellesley residents Jill and Steve Purpura received from their pediatrician when they worried aloud about their first born son, Steven. When Steven was two years old, Jill made multiple appointments with their son’s doctor to express her concern about their son’s frequent meltdowns, his difficulty interacting appropriately with his peers, and his environmental sensitivities. “We kept saying ‘we don’t understand, tell us what to do,’ ” says Steve, “and the doctor would say, ‘don’t worry, he’ll outgrow it.'” But instead of getting better, Steven’s personality profile began to shift as he got older to include extremely narrow areas of interest that didn’t seem to fit with other children his age. For example, at age four, Legos and dinosaurs weren’t nearly as captivating to Steven as downtown parking garages. “We used to go into Boston on tours of the parking garages,” says Jill. “We can tell you anything you want to know, how many levels there are, what company manages them, what color each level is. We just thought we had this highly intelligent kid who was into architecture.” But finally, it was Jill’s mother who became so certain that Steven’s problems weren’t being “outgrown” that she handed her daughter a list of local neuro-psychiatrists to help unravel the mysteries behind her grandson’s behavior.

An Epidemic
At the tender age of four, Steven underwent a battery of tests and was diagnosed with Asperger Syndrome, an autism spectrum disorder (ASD). For better or worse, the Purpuras found themselves in good company. According to the most recent data, the chance of a child developing an ASD is now as high in one in 150 according to a 2002 study from the Centers for Disease Control. Wellesley and Weston are no different, according to local authorities. “We are a wealthy community, but wealth and social status don’t immunize against these disorders. For a complicated set of reasons, this really is an epidemic,” says Dr. Daniel Rosenn, a nationally-regarded specialist with a practice in Wellesley. An ongoing debate among professionals over whether the high numbers result from a real increase in ASD, from more accurate diagnostic techniques, or some outside, environmental trigger has yet to be resolved. But what Dr. Rosenn refers to as “a tsunami” of cases will surely have an impact on families, schools, and the wider community in the years ahead.

Dot Lucci, Director of Consultation Services for YouthCare, a Massachusetts General Hospital partnered program that offers comprehensive programming to children on the autism spectrum, admits that when it comes to explaining the causes of autism, “there is so much that we don’t know that we are now finally admitting we don’t know.” She continues: “There is the genetic piece, the viral piece, the environmental piece. There seems to be this fragile neurochemistry in place and then an ‘insult’ happens whether in utero or later.”

Dr. Rosenn argues that genetics play a primary role in determining whether a family will have a child on the autism spectrum and that there are some geographical hot spots that will have a prevalence of children with ASDs. “There is a mathematical coherence to the notion that there are clumpings of people around particular types of towns,” he says. “There are certain communities in which it is more prevalent than others, where the fathers are into high tech and are highly intellectualized and analytic. In towns right around Route 128 like Wellesley, Weston, Lexington, and Bedford, there can be a much higher incidence of this disorder.”

A Contradictory Host of Characteristics
No matter what the origins or where one lives, an individual on the autism spectrum will often exhibit a contradictory host of characteristics that requires finesse from family members, flexible and creative thinking from schools, and an empathetic outlook from employers.
Like Steven Purpura, many of those with Asperger Syndrome or high functioning autism (HFA) have normal to extremely high levels of intelligence. But they can exhibit extreme social awkwardness with peers, have hypersensitivity to noise and the environment, suffer from persistent anxiety, and have trouble with body language and social cues from others, among other indicators. It is these kinds of subtle signs that can be confusing to parents, especially if their child has displayed dazzling early capacities. “He is so interesting, so engaging, he has this unbelievable memory,” says Jill Purpura, “he is so intelligent and he was our first, so we just tried to justify [his other behaviors]. These early facilities can blind parents to addressing the other debilitating conduct that they may be witnessing.

“This is the blessing and the curse of the early splinter skills that parents notice about their two-or three-year-old,” says Dr. Rosenn, “It’s almost a Greek tragedy because all of a sudden the child is reading at two—and he hasn’t been taught—and you say ‘my god, he’s brilliant.’ It is the very thing that for months gives you tremendous pride and optimism for your child. Then it comes back to bite you when your child is four and someone tells you that these are the hallmarks of an ASD.”

The Other End of the Spectrum
But for others, whose children fall under the lower-functioning end of the autism spectrum, obvious signs are evident at very young age. Karen and Brian Mariscal’s son, Billy, was red flagged as an infant when his head circumference didn’t grow at the same rate as his peers. “We were told it could be life threatening or it could be nothing,” says Karen. But when Billy was 15 months old, Karen was asked by her pediatrician: “What happens when you ask Billy to get his shoes?” Karen knew that her answer would unearth the disquieting truth that Billy wouldn’t understand the request at all. Billy was diagnosed as profoundly autistic, and, like many of those with that diagnosis, is mentally retarded.

“It was extremely difficult when he was first diagnosed because there is this whole culture that says to address it quick and you can fix it. All the pressure is on the mother,” says Karen, “but you are facing a very difficult situation at home. The kid is climbing the walls – literally – you can barely keep the child safe and you are told to fix this problem and not given a road map on how to do it.” It is true that multiple emerging therapies can promise, and sometimes deliver, outstanding results, but struggling to keep up with the latest breakthrough can be a full-time job.

An Ongoing Challenge for the Schools
“In the MetroWest area, there are parents who definitely know more than even school professionals do,” says Dot Lucci. “How do you respond to all the methodologies and treatments out there?” This is an ongoing challenge for area schools. Because autism and Asperger’s are primarily neurological disorders, the onus to deliver services to these students falls primarily on the school system.

“With these disorders the interventions are multimodal, but the largest interventions in childhood occur in the schools,” says Dr. Rosenn. He adds: “The issue really is: do schools like Wellesley and Weston buy into the diagnosis and provide services that are recommended? Have they developed specialized programming? And if they can’t service the child, are they willing to place the child out of system?”

Troy Carr is the school psychologist for Schofield Elementary in Wellesley. He agrees that schools need to support students with ASDs with a variety of methods but most importantly in a manner that is most meaningful to that individual child. “A child may have some anxiety and tend to be very rigid and inflexible,” says Carr, “so we do what we can to address those issues. They may attend social pragmatics groups where we emphasize turn taking, give them frequent ‘motor’ breaks, and warn them about fire drills.”

This approach is exactly what is necessary to best service the child with an ASD according to Dr. Scott McLeod, executive director of YouthCare, who frequently consults at area schools to educate the teaching professionals about ASDs. “We have this culture that emphasizes cooperative learning and working well together. For neuro-typical kids, it’s learned by osmosis,” he says, “but for kids on the spectrum who need to be taught that directly, schools have a responsibility to teach it.”

It is generally agreed that Wellesley and Weston are ahead of many other districts when it comes to being proactive with this population. But even with their best efforts, public schools aren’t always able to meet all the needs of a student with autism. “The Weston Public Schools tried their best, they really did,” says Melinda Miller, whose son is now thriving at an out of state boarding school. She continues, “However, my son didn’t really get what he needed. He was so isolated. He was given an aide but when it came time for ‘group work’, he had not been integrated so he was just lost.”

Obvious strains appear when scarce resources are up for grabs. “The dollars aren’t unlimited,” says Dr. McLeod. “It is a huge challenge for school districts to figure out what is fair and equitable when you are comparing kids between disorders.” And because real progress can be made with proper support to those with ASDs, a do-nothing approach is disastrous.

“These kids can have a slip-though-the-crack profile,” says Dr. Rosenn, “but inevitably their symptoms will break through.” Karen Mariscal is still astonished at what the schools have accomplished with Billy. “They essentially took a perpetual motion machine and handed me back a lovely human being,” she says of the educators at the special classroom he attended at Wellesley’s Upham Elementary School and at LABBB (Lexington, Arlington, Belmont, Bedford, Burlington), the collaborative program he attends today at Lexington High School. “It’s a miracle.”

Jill Purpura was also impressed. At the initial Individualized Education Program (IEP) meeting for kindergarten, she received services beyond what she thought possible. “They were adding stuff we hadn’t thought of!” she laughed.

Will all of this support and therapy make a difference to those students who will come through these school systems as young adults? How, then, to measure success? “We teach kids to remember: ‘I am good at something. I can be successful at something.’ We teach kids it will be okay,” says Dr. McLeod.

Having hope is something that sustains the Purpuras. Jill says, “It’s hard for me to see anything but the positives. If you give yourself hope, you will never despair.”

Melinda Miller has a larger wish. She hopes that those with autism will be seen as positive members of a society comprised of all different kinds of people. “These folks have different strengths,” she says, “they see things in a different way. With all the expectations we have in towns like ours, we don’t want to lose them along the way. They have too much to offer.”