By Sue Ann Rybak
Pennsylvania faces an autism crisis if it fails to address the needs of adults with autism.
According to the latest Pennsylvania Autism Census, “the number of adults with autism [living in Pennsylvania] will increase dramatically in the near future, growing by 179 percent – from 3,800 in 2010 to more than 10,000 by 2014.
In response to the critical need for more professionals and community members to be trained in issues associated with autism, Chestnut Hill College has developed a two-pronged academic and community initiative to support individuals with autism spectrum disorder (ADS).
This fall, a new concentration in the Clinical and Counseling Psychology program will focus on ASD across the lifespan. The four courses may also be taken as a post-graduate certificate or licensure preparation credit.
In addition, a new 12-credit professional certificate focused on the needs of adults with autism will also be available in the fall. The professional certificate program is designed for professionals in various human service positions, including those in the medical, employment, education, and public safety fields.
Rosemary Mullaly, program coordinator of the Chestnut Hill Autism Initiative Network (CHAIN), said the program was “vitally necessary to assure that both professionals and family members are knowledgeable about the unique needs of transitioning students and adults with ASD.”
“Autism is not a death penalty,” said Mullaly, whose 10-year-old son has autism. “However, the less prepared we are to provide these young children with a quality of life that will go from birth to death, the more anxiety parents will feel. If I had an 18-year-old right now, I would be freaking out.”
Mullaly is one of the thousands of parents who will lose support services for their child when they reach the age of 21. Children receive early intervention and other services under the Federal Special Education Entitlement Grant. The purpose of the federal grant program is to provide funds to ensure that eligible students with disabilities receive a free and appropriate public education that includes special education and related services designed to meet the individual’s needs.
“The death knell of autism will be cracked if we are able to say [to parents] ‘don’t worry about it – we’ve got it covered,’” Mullaly said. “It’s a cautionary tale because we don’t have it covered.”
Holly Kofsky, a board member of the Greater Philadelphia Chapter of the Autism Society of America who chairs the chapter’s adult services committee, said autism doesn’t just impact the individual with autism “it affects parents and their ability to maintain a certain income because of the needs of their child.”
“It’s like falling off a cliff,” Kofsky said. “In Pennsylvania, they [adults with autism] are expected to be cured at 21 because there are no services available.”
Kofsky added that many mothers of children with autism are forced to quit their job and stay home to take care of their adult child.
Mullaly said one of the problems is that there is a lack of public awareness and research on adults with autism. She added that human beings spend most of their lives as adults, but “the majority of research goes into identifying, developing and curing autism.”
Besides the financial, emotional and social challenges of caring for a child with autism, parents often have difficulty obtaining services that address the specific needs of their child. Mullaly said while parents may be able to find a speech therapist who is trained to work on articulation problems, they are not necessarily trained to address issues specific to autism, such as pragmatic speech or social speech.
“It’s almost impossible to find medical professionals in their field who are trained to deal with children with autism,” she said.
Mullaly said Chestnut Hill College hopes “to fill that void with quality training” so professionals in the field can go back to their job and provide the same quality service everyone should receive.”
Dr. Rosemarie Manfredi, assistant professor of psychology and faculty and curriculum coordinator of ASD programs at Chestnut Hill College, said part of the problem is that parents are constantly being bombarded with information.
“There is a lot of misinformation out there,” Manfredi said. “People repeat it as fact.”
She said parents are often desperate to find a cure.
“While some of our parents are well-educated, I work with families everyday where the parents themselves have a developmental disability,” Manfredi said. “It makes them very vulnerable to people trying to sell their products and promote different therapies that may not be helpful to their child.”
She said that if there are trained professionals providing appropriate support services to adults with autism, only the severely impaired people will not be able to have fulfilling, meaningful and active lives in the community.
“There are a lot of benefits to having a community that is aware of autism and inclusive of people with autism,” Manfredi said, noting that many individuals with autism are able to work with the proper support systems in place. “There are moral and ethic arguments about how it makes a community that’s more empathic and understanding to people with disabilities of all kinds. Everyone benefits when you make a community that is inclusive and understanding.”
Dr. Steven Guerriero, dean of the School of Graduate Studies at Chestnut Hill said the college was “very optimistic about the initiative,” not only in terms of attracting people to the programs but also in providing essential and practical education to assist an under-represented population.
“It’s mission driven,” he added.
For more information go to www.chc.edu/graduate/programs/autism_spectrum_disorders_certificate/