Innovative help for parents of autistic children

In 1997, the Pennsylvania Department of Education held a focus group of parents with autistic children throughout the state to learn more about their needs. George Shadie of Luzerne County was one of those parents.

"I was frustrated with the school systems and the child development systems," said Shadie. "Children with autism were diagnosed with retardation or schizophrenia. … There were no meaningful services for children with autism."

The focus group said they needed effective research-based strategies and programs to ensure professionals were getting training in those strategies.

Parents pointed toward Applied Behavior Analysis (ABA), a strong evidenced-based approach for helping autistic children. Used in everything from organizational management to phonics, it is a science and discipline devoted to the understanding and improvement of human behavior. It includes elements and strategies, such as reinforcement, prompting and shaping, among many others.

"ABA was a validated approach," said Fran Warkomski, director of the Pennsylvania Training and Technical Assistance Network (PaTTAN) in the Pennsylvania Department of Education. "We didn't have that methodology in the state." PaTTAN turned to the Penn State Outreach Office of Statewide Programs.

Penn State University then developed a certificate program in applied behavior analysis, which, once completed, ultimately permits individuals to sit for the Behavior Analyst Certification Board examination.

"We were happy to have that initial collaboration with Penn State," said Warkomski. "Because of Penn State's multitude of campuses, we were able to reach more people. That success then flourished into a number of other projects."

Take, for example, the popular Summer Autism Institute and the National Conference on Autism, which take place at Penn State each year. This year, about 1,500-plus people registered for the program. The institute offers classes in professional development related to autism; parents and children also attend the conference to listen to experts in the field and to meet others. Running concurrently is the Pennsylvania Low Incidence Institutes, which offer professional development classes for those working with the deaf and visually impaired.

"Autism is where we started the partnership," said Warkomski. "It's one of the biggest growing areas in special education."

John Neisworth, Penn State professor emeritus of special education and academic director of the ABA certificate program -- which last year won the National Award for Outstanding Credit Program by the University Continuing Education Association -- said, "Autism has gained a lot of attention nationally. Because of that and the applicability of ABA, Outreach has made autism a priority."

In fact, autism -- a disorder of behavior and communication -- is more common than childhood cancer, cystic fibrosis and multiple sclerosis combined, according to the Autism Society of America. One in every 250 babies born today will develop some form of autism, which means that an estimated 1.5 million Americans (children and adults) have the disability.

Depending on when a child is diagnosed, early and intensive treatment can bring improvement. "Although that doesn't mean older children can't be helped," said Neisworth.

While running a summer institute in Ohio, Neisworth met a mother of an autistic child who told him that thanks to "24-hours-a-day" of ABA treatment, her 6-year-old daughter, who was diagnosed with autism at age 2, has recently lost that diagnosis and graduated from a mainstream kindergarten class. "ABA saved our lives," said Ronda Veltri.

Mary McIntosh of Erie also credits ABA for her son Matthew's improvement. A behavioral specialist who attended the Penn State Autism Institute to study ABA, McIntosh has two children who were diagnosed with autism. Matthew, now 13, was diagnosed with autism at age 3. Thanks to intensive ABA in a program and at home, Matthew is now high-functioning He even recently tied for third place in a county-wide spelling bee. McIntosh said that her other son, age 12, has shown improvement with ABA intervention.

While not all children may reach the same level of success as Matthew or Veltri's daughter, "You're hoping for the most independence and integration as possible," said Penn State's Pamela Wolfe, academic coordinator for the professional development in autism certificate program, which provides advanced training in the area of autism spectrum disorders, and co-director of a master's level training grant related to autism and communication disorders. "You are looking for a quality of life."

Children are diagnosed under a wide umbrella, from the child who is uncommunicative to a child who can function in a mainstream classroom, but perhaps has certain quirks.

The newest Penn State project to address the issue is a remake of the professional development in autism certificate program. Under development by Wolfe and Neisworth, the first courses are due in January; the program will incorporate practical, hands-on information and be available nationwide.

Neisworth and Wolfe also have completed The Autism Encyclopedia, to be released by Brookes Publishing this fall.

Largely due to the success and quality of the ABA certificate program, PaTTAN approached Penn State to produce another certificate program on reading instruction for special education, which via distance education trains teachers to help students in grades four through 12 who are struggling in reading.

"It was felt that teachers of struggling readers needed to be taught evidenced-based practices," said Charles Hughes, Penn State professor of education. Hughes put together the program with other faculty from special education and educational psychology, along with consultants from the University of Pittsburgh and Lehigh University.

Another distance education program addressing special needs is assistive technologies, offered by Penn State Berks-Lehigh Valley Continuing Education. The program trains those working in the health-care field and in school districts to use the devices that make everyday life easier. Those devices can include everything from hearing aids to an item that helps a child grasp a pencil.

A device to help teachers themselves is in the works as part of a new Penn State project funded by PaTTAN. Special education teachers will be able to record and track results of progress assessments into Toshiba hand-held PDAs, which will create usable reports.

"The software will save an enormous amount of the teacher's time," said Todd Roth, project manager. The pilot program begins in local school districts in February.

Many other projects are in the works: a certificate program in math; a video for doctors' offices that will help employees recognize early signs of autism; a tool kit for parents of children with autism; and a curriculum that will help children in mainstream classes understand autism.

The initial collaboration with the state on ABA put Penn State on the map in the area of special needs, and projects such as these enforce the University's prominent place.

"It's been an overwhelmingly positive partnership that's led to improvement in professional development and services for teachers and parents," said Warkomski.