The second article in a four-part series on autism
by Sue Ann Rybak
At first glance you might not notice that 22-year-old Jacob “Jake” Diamond, of Chestnut Hill, has a severe form of autism. At 6 feet tall and 230 pounds, he is built like a linebacker. It’s easy to see why people might be afraid of him, but his gentle blue eyes quickly put any visitor at ease.
“Jacob is essentially nonverbal and non-aggressive in any way,” said Ella Diamond, Jake’s mother. “We do have rudimentary communication using a letter board on an iPad. A lot of people are afraid of Jake. He is a big guy who flaps his arms around a lot.”
Jake used to have a very active social life until last year when he turned 21. From the age of 6 until he turned 21, he attended Pathway, a nonprofit private school in Norristown that serves students with neurological impairments – including autism spectrum disorder.
“Jacob’s life has changed dramatically for the worse,” Diamond said. “He went from going to a campus where he encountered hundreds of people doing different activities all day long to sitting at home.”
Diamond said she had noticed some social regression in Jacob since he stopped going to school.
“Jake’s more of a normal kid than not,” she said. “He wants to hang out with people his own age. After Jake left school, we tried to carve out a life for him in the community.”
The reaction to the Diamonds attempts to involve Jacob in a few volunteer programs in Chestnut Hill, however, were heartbreaking. Some local institutions flatly refused to let Jacob participate, even though a parent and licensed caretaker would be supervising him the entire time.
Jacob loves walking in the park, gardening and going to the gym. Unfortunately, besides dealing with the challenges of autism, Jacob also has epilepsy.
“We’ve gone through the gambit of medical options,” Diamond said. “Nothing has controlled his seizure activity.”
According to the website www.autism-help.org, one in four children with autism will develop seizures.
Diamond, who has lived in Chestnut Hill for 35 years, said the extreme stress and isolation she and her husband experience as parents of an adult child with autism is the most devastating.
“Roy and I never go out socially together,” she said. “The fact that Jake doesn’t have a place to go every day impacts our family hugely.”
The Diamonds struggle daily to overcome the stigma associated with adults with autism.
“People are more accepting of a child with autism,” Diamond said. “As people like my son get older, people are more comfortable with isolating them and putting them away than integrating them into the community. It’s just mind-boggling to me the amount of discrimination people openly show to my son.”
Rosemary Mullaly, program coordinator for the Chestnut Hill Autism Initiative Network (CHAIN) at Chestnut Hill College, said one of the problems is that there is a lack of public awareness and research on adults with autism.
“Let’s be honest – when little kids are cute and autistic that’s fine,” said Mullaly, whose 10-year-old son has autism. “But, when you put a face on autism that’s a big, overweight kid who says inappropriate things in public, then people are not so sympathetic anymore.”
Mullaly said human beings spend most of their lives as adults, but “the majority of research goes into identifying, developing and curing autism”
“If I was a parent of an 18-year-old right now, I would be freaking out,” Mullaly said. “The cost of doing nothing far exceeds the cost of doing what needs to happen, which is to give dignity to the person, improve their quality of life and provide the supports they need.”
An autism epidemic
In 2004, Estelle B. Richman, secretary of the Pennsylvania Department of Public Welfare, created the Autism Task Force to examine the services available to individuals with autism. At that time the number of individuals in Pennsylvania diagnosed with ASD had risen more than 2,000 percent from 1989 to 2004. Roy Diamond, Jacob’s father, was a member of that task force.
The 2004 Autism Task Force Final Report stated that “to terminate the supports for improved communication, management of sensory/movement challenges, educational opportunity, social and community integration, occupational and behavior consultation services (and therefore gains by children with autism) available until the person reaches 21 is cruel, cost ineffective and discriminatory in light of the commonwealth’s strong commitment to the continuing education of non-disabled adults through its public university education system.”
Adults with autism have no entitlements to any services. The report also noted that, with the proper support, “many (if not most) adults living with autism can become productive, tax-paying citizens.”
The report found that a majority of adults with autism live at home until families are unable to care for them, and they “are often sentenced to a life in an institution.”
“It’s like falling off a cliff,” said Holly Kofsky, a board member of the Greater Philadelphia Chapter of the Autism Society of America who chairs the chapter’s adult services committee. “In Pennsylvania, they are expected to be cured at 21 because there are no services,”
Many adults with autism require 24/7 care, and when their services are cut, their parents are forced to quit their jobs.
Kofsky said single parents of an adult child often have no other choice but to quit their job.
“They end up collecting welfare,” she said. “The money they receive from welfare could have gone into day services for their loved one. It doesn’t make sense the way we have it set up.”
According to Kofsky, the cost of institutionalizing just one individual with autism for a year would be approximately $240,000, and the state is obligated to pay for such institutionalization.
“Most families and individuals with autism don’t want that,” Kofsky said. “They just want a little help.”
A study by the Organization for Autism Research and the New York Center for Autism found that “the potential of individuals with autism to become employed and engaged adults is limited more by the failure of the systems charged with supporting them than by the challenges associated with having autism.”
“Adults with autism, despite their challenges, are able to live in the community and have meaningful lives outside of an institution,” said Roy Diamond, Jacob’s father.
Diamond said that when his son was diagnosed in 1992, the incidence of autism was about one in 10,000.
“It was a much more difficult world,” he said. “There were no programs for children with autism. Twenty-five years ago, parents were still institutionalizing their children because medical professionals said ‘they would never be able to live outside of an institutional environment.’”
Diamond said parents thought otherwise, and in 1975 Congress passed the Education for All Handicapped Children Act, also known as the Individuals with Disabilities Education Act (IDEA) of the Federal Special Education Entitlement Grant.
The purpose of the federal entitlement grant program is to provide funds to ensure that eligible students with disabilities received a free and appropriate public education that included special education and related services designed to meet the individual’s needs.
“It was a really lonely and groundbreaking time,” Diamond said. “Those days it was a miracle simply live outside institutional walls. But, it wasn’t enough to have a holding cell in a neighborhood house – they were human beings with the capacity to work and form social relations.”
He said there is now an “explosion of people with autism.”
The Centers for Disease Control estimates that one in 88 children suffer from autistic spectrum disorders (ASD).
“Autism remains a mystery,” Diamond said.
He added that when many parents learn their child has autism it can seem like a death sentence.
“Parents go through the same Kubler-Ross stages of grief – denial, anger, bargaining, depression and acceptance,” he said.
He said in one of the early stages you are convinced you can fix it.
“The implicit hope is that if you can address autism at an early age you can cure it,” Diamond said. “Unfortunately, it’s not true.”
Autism affects not just the individual with autism, but the parents, siblings and other members of the community.
“Our trajectory as parents in our lives is so vastly different than our friends,” Ella Diamond said.
“Parents of kids with autism have to live forever. This is not a story with a happy ending.”