In many ways, Erin Bartholomae is a typical soon-to-be college graduate.
“I’m nervous about what I’ll do after graduation,” Erin said. “But graduating? The actual day? Woo-hoo!”
But she’s not typical. In 1987 at the age of 2 1/2, Erin was diagnosed autistic. Though she is highly functional, the disorder has significantly impacted her life and that of her family.
According to the Autism Society of America, autism is “a complex developmental disability that affects the normal function of the brain, impacting development in areas of social interaction and communication skills.” People with autism struggle with verbal and nonverbal communication. The term “autism” was first used by Dr. Leo Kanner in 1943. Kanner, a psychiatrist and physician, applied the term to a group of children with severe social, behavioral and communication deficiencies. Over time, the definition has been modified, and autism is now recognized as a spectrum disorder that affects each individual differently and at varying degrees.
Autism is the most common of five so-called pervasive development disorders. Other PPDs include Asperger’s Syndrome and Rett’s Syndrome. About 1.5 million people in the United States have some form of autism according to the ASA, and that number grows by about 10 to 17 percent each year. Generally diagnosed within the first three years of life, autism is four times more common in boys than girls. It is not affected by race, ethnicity, income level or social standing. The cause of the disorder is unknown, though there is a suspected genetic link, and researchers are looking into possible links between autism and problems during pregnancy and delivery, viral infection, metabolic imbalances or exposure to environmental chemicals.
One thing is certain: autism and autistic behavior is not a choice. The ASA’s website states, “Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. It is not caused by bad parenting. Autism is not a mental illness. Children with autism are not unruly kids who choose not to behave.”
Living on the spectrum
“The tough part about autism is that most cases on the surface look similar, but when you get down to it, all of our kids are different,” said Dee Perkins, a member of the Liverpool school board.
Perkins’ 11-year-old son Taylor, a sixth-grader at Willow Field Elementary, is autistic. She attended a state conference on autism in Albany last month and spoke about the need for increased resources for autistics in Central New York.
The hearing, held March 8, explored high rates of autism among New York’s children, its possible causes and its impact on families. According to the state legislature, autism diagnoses in New York alone have risen 700 percent since 1992, rapidly outgrowing the resources available.
“We have Casey’s Place, Enable and Exceptional Family Resources doing some great work in our community,” Perkins said, “but that need is ballooning at an alarming pace.”
The state is working to improve the resources and access to them for those in need of care. Perkins and autism experts agree that early intervention and access to services is critical.
Erin Bartholomae is a key example of the importance of early intervention. Right after her diagnosis, Erin’s parents enrolled her at Main Street School, an integrated preschool program in North Syracuse.
“They were great,” said Erin’s mother Peggy. “They helped a lot. But it was really hard for me to send her to school. I was afraid they wouldn’t understand her.”
Fortunately, the teachers at Main Street were more than adequately trained to handle a child with disabilities like Erin’s. Maureen Patterson, now assistant superintendent for curriculum and instruction for the Liverpool district, taught at the preschool at the time that Erin was a student there.
“There are an abundance of people at Main Street — especially the occupational therapy staff, the physical therapy staff, the vision staff and the hearing impaired staff — whose knowledge is akin to that of a medical staff,” Patterson said. “I was changing ostomy bags as a teacher there. I had to know all of that stuff.”
Patterson said that the Liverpool school district was not far behind Main Street in establishing an integrated special ed program, allowing students with disabilities to enter mainstream classrooms with their “typical” peers with the help of a special ed teacher and teacher’s aide.
“It was implemented here in the early 1980s,” said Laura Lavine, director of special education for Liverpool.
Liverpool: The place to be
“If you have a disabled child, Central New York is a good place to be,” Patterson said. “The resources and the schools here are wonderful.”
Indeed, Liverpool certainly has the experience to deal with disabled and special needs students. Sixteen percent of its students have a diagnosed disability, higher than the state average. In order to accommodate its students, Liverpool will either create an integrated classroom at the child’s home school (the school which he or she would go to according to district boundaries) or sends the child to another school for specialized instruction.
“It depends on the child, the level of management needed and the experience and staff of a given school,” Lavine said. “We consider all of those and make a decision about where the child would be best served.”
Lavine pointed out that, though an official autism diagnosis from a physician is necessary for an autistic student to receive special education services, they also must demonstrate a need for them.
“Not all kids do [need special ed services],” Lavine said. “Some parents come in with a diagnosis from an outside psychiatrist, but if their child has no trouble accessing the general education curriculum, then the student does not get special services. There’s no need for it.”
Both Lavine and Patterson stressed that special education is not about giving kids an unfair advantage; it’s about leveling the playing field.
“It’s about providing services and programs that will make kids meet gen ed standards,” Lavine said. “Special ed is all about general ed.”
Patterson agreed. “We look at all students and ask more questions,” she said. “It’s based more on the educational needs of each individual student than a diagnosis.”
Perkins, who has experienced the system firsthand, is pleased with the education her son is receiving. “I’m proud that we try to keep the child’s abilities in mind when we structure our programs around children who are delayed,” she said. “We all have the goal in mind of giving our children an education where they will be as independent and successful as they can be.”
“We expect all of our students to be graduates,” Patterson said.
A success story
Erin exceeded those expectations, graduating high school with her class and going on to college, though it wasn’t always easy.
“She had a really hard time with things other kids don’t even think about,” Peggy said. “Loud noises and crowds really bothered her, so large groups like in the cafeteria, the gym or on the bus were hard for her. She couldn’t focus on her work because everything was overwhelming and scary for her. It’s gotten a lot better now.”
And it wasn’t just academics.
“Socially I had a hard time,” Erin said. “I had the typical teenage stuff.”
“Kids picked on her for no reason,” Peggy said. “Even some people that knew her were mean to her. They just had this overwhelming need to be cool, I guess. People assume that behavior is voluntary and you’re weird or different by choice. That’s not the case. And too many parents think that and pass it on to their kids.”
The social pressures did affect Erin’s learning.
“She didn’t want people to think that she got an unfair advantage by getting modifications,” Peggy said. “She didn’t want to use them. She was acutely aware of the social pressure to not have anything different and not be treated specially.”
“I didn’t want to take extra time for tests or let people know about my learning disability because of the stigma,” Erin said. “But now [at Cazenovia College], I let my professors know. I think there’s not a stigma in college. I tell my professors and they let me use modifications. It makes it easier.”
Erin is also working with Enable, a local organization that offers services to individuals with disabilities and their families. She has a counselor there who is working with her on job applications, interviewing skills and more to prepare her for life after graduation. Her mother said that she should serve as an inspiration to parents of children who have recently received an autism diagnosis.
“The key is not to worry about what the label is or what most kids do,” Peggy said. “Each kid is different. You have to look at the behavior that causes the problem and try to modify it. Granted, that’s easier said than done, but you just have to deal with those behaviors.”
On May 19, Erin will graduate from Cazenovia College with a bachelor’s degree in human services.
“She’s come so far,” Peggy said. “At the time that she was diagnosed, she wasn’t talking. They said she might not graduate from high school. She’s exceeded everybody’s expectations. We’re very proud of her.”
