Every day more than 900 Delaware schoolchildren head off to classrooms where they learn the social, verbal and behavioral skills that the rest of us take for granted.
They have autism, a developmental disorder that can compromise learning and impair social function. The condition has captured a great deal of press in recent years as the number of cases has soared. In 1995 the prevalence of autism was one in every 2,500 births. Today it occurs in one of every 91 children, according to the latest statistics from the U.S. government’s Health Resources and Services Administration.
Is there an epidemic of autism, or has the explosion of cases resulted from new definitions, greater awareness and more services?
“I think it’s a little unclear what’s happening,” says Dr. Anne Meduri, a developmental pediatrician at the Alfred I. duPont Hospital for Children in Wilmington. “It’s probably a combination of things.”
Experts believe some of the increase may be due to how doctors define autism. In the 1990s the definition was expanded to include a group of related conditions known as “autism spectrum disorders.” Some support groups report that more than half of their families have diagnoses of milder disorders such as Asperger’s syndrome or another condition awkwardly known as pervasive developmental disorder.
Another reason for the rise could be the requirement for schools to report data on children receiving special education. Autism was added as a category beginning with the 1991-1992 academic year. Not surprisingly, there was a spike in cases reported between 1995 and 2004. But as Meduri notes, the criteria for an educational diagnosis of autism are less specific than for a medical one.
“I’ve seen children for a medical evaluation that I didn’t feel necessarily met the criteria, but they were able to give them an educational diagnosis of autism,” she says.
There have also been changes in parents’ perception of autism, the services schools provide and the financial assistance that comes with a diagnosis. Autism has become socially acceptable.
“There’s a perception that if you have autism, there are a lot more treatments available that may help, versus other intellectual and developmental disabilities that have a finality to them,” says Meduri.
Page 2: The Autism Debate, continues…
Indeed, several studies indicate that the numbers of children receiving special education for other cognitive deficits declined as the number of those getting help for autism was rising. But if more kids are truly developing autism, what’s fueling the increase? As with most illnesses, experts believe genetics and environmental factors play a role. Vaccinations have been a favorite target, but no solid link has been found.
No matter what is fueling the surge, one thing is certain: More resources will be needed to meet the needs of children and families affected by the disorder. Advocates agree that Delaware has done a good job of providing services, but they say the state will need to reorder its priorities to meet future demand. “We were ahead of the curve for 20 years, but we allowed our systems to get overloaded, and we didn’t look out for new and improving models,” says Theda Ellis, executive director of Autism Delaware. “We do some great things for kids, but are we where we were? No.”
One area Delaware leads is education. The Delaware Autistic Program is the only statewide public school program in the nation for autistic children. One district in each county administers the 30-year-old program, which now serves more than 700 students. That’s three times as many as 15 years ago.
The growth has brought challenges. Finding qualified staff to teach autistic children can be tough. “The bulk of special education is oriented toward kids with mild to moderate cognitive delays,” says Dr. Vincent Winterling, director of the Delaware Autism Program. “The problem is the range of characteristics that are presented in kids with autism. It requires more sophistication in terms of your ability to figure out how to teach these kids.”
At the same time, the program’s reputation has attracted families from out of state, putting more pressure on resources. Officials estimate that transferred students account for about 10 percent of the program’s enrollment.
“As a general rule, letting more kids into the system is not always the best thing, because you’re diluting valuable resources,” says Winterling. “Right now we’re hanging in there, but there’s always the need to upgrade training, upgrade recruitment.”
Meanwhile, school districts, including Brandywine, Capital and Seaford, are opting to educate their autistic students by following approaches approved by the state Board of Education and the Delaware Autism Program. More districts will need to increase services to their autistic students to keep up with demand.
“The DAP doesn’t have the capacity to serve all the children who might have a need to be served,” says Martha Toomey, who directs special education services for the Delaware Department of Education.
That could be a challenge for smaller districts. “It’s hard to build the capacity within the smaller districts to serve every child as effectively as possible,” says Dr. Peter Doehring, a former statewide director of the Delaware Autistic Program who is now director of regional programs for the Center for Autism Research at The Children’s Hospital of Philadelphia.
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But education is only part of the picture. Advocates maintain that the state must provide adequate funding and coordinate efforts to provide young adults with opportunities for suitable living arrangements and employment. They believe Delaware has done a good job with the transition so far, but they admit more work needs to be done.
“Some of it is fragmented at best,” says Melissa Tice Martin, southern Delaware adult services coordinator for Autism Delaware. “And with the skyrocketing rate, we really need to have the state take a hard look at how we’re providing services that support families and individuals throughout their lifespan.”
This year, for the first time, there is no money budgeted to provide employment for students graduating from autistic programs. Failure to restore funding could have serious social and economic consequences.
“It’s money well invested because what happens to the fabric of your community when you don’t serve these young adults coming out?” says Bill Adami, president and CEO of Easter Seals Delaware. “What’s the impact on the family structure? And when you keep people gainfully employed, they become taxpayers.”
Advocates are trying to secure funding that would allow adult autistic children to remain at home to keep them out of more expensive residential programs as long as possible. In 2006 Autism Delaware joined forces with seven other disability organizations to push for a Medicaid waiver that would allow families to select services and supports that meet their needs. The effort failed. But in 2008 the Division of Developmental Disabilities Services succeeded in creating a program called the Self-Directed Support Waiver, though the recession has put implementation on hold, Ellis says.
No one expects the situation to improve any time soon. “The Division of Developmental Disabilities Services hasn’t seen an increase in funding since 2002, so they have tightened their belts every year and tried to serve more and more people,” says Tice Martin. “What we’re looking at at this point in time, given the economic circumstances is that we will be doing less with less.”
Advocates have faith in Delaware’s ability to meet the challenges ahead. Educators, social service providers, state officials and support groups are meeting to discuss ways to improve teacher training, address staff shortages, and deliver services to individuals and families of children with autism.
“We’re really concerned about the future,” says Ellis. “But long-term, I think we’re going to be OK.”
Page 4: Robodoc | Kent General Hospital adds a new surgical tool.
Kent General Hospital adds a new surgical tool.
Downstate residents can now easily access one of the latest medical advances, as Kent General Hospital in Dover unveils da Vinci Surgical Robots in its operating rooms. The robots allow for greater precision and quicker recovery.
“The da Vinci is a tool to allow us to do more minimally invasive surgery,” says Dr. Scott Bovelsky, chair of the robotics committee and a lead robotic surgeon at Kent General. When used during a hysterectomy, for example, the da Vinci is a very helpful tool. “Instead of making one big incision, we make three or four small incisions,” he says. “Instead of three days in the hospital, the patient will go home the next day.”
Bovelsky stresses that while the technology may be different, the surgeon’s knowledge of the procedure is the same. “It’s big and bulky, so people may get intimidated,” says Bovelsky. “The big thing for people to realize is that it is a new tool, not a new surgery.” —Katherine DiMaggio
Page 5: Doctor’s Orders | Gregory Marcotte, M.D., asthma and allergy specialist, Wilmington
Gregory Marcotte, M.D., asthma and allergy specialist, Wilmington
Springtime means dreaded seasonal allergies. How can you best protect yourself? Limit time outdoors and, “If you are venturing outdoors, take medications as needed, such as over-the-counter antihistamines or prescription nose sprays.” —Katherine DiMaggio