by Lou Mancinelli
The first crisis for a family with a child with autism is the diagnosis. The second is when the child becomes an adult and is no longer guaranteed by law access to the help he/she needs. That’s when opportunities for the young adult just about all disappear.
Often, without the money or access to programs designed for adults suffering from autistic spectral disorders (ASD), individuals over 21 who were working on improving their communication skills that at times seemed to disconnect them from society are cut off from future opportunities. If they are fortunate enough to get into a state program or can afford to pay, they might go to a facility that deals with a range of disabilities. But even there, the specialized care needed can be hard to find.
What might become then of the hundreds of thousands of children who will soon be adults but who were diagnosed with an autism disorder in the past 10 years alone? Years ago they would have been institutionalized. While autism disorders have existed for centuries, they are relatively new to be diagnosed and treated by medical professionals.
Between 2000 and 2007 alone, there was a 124 percent increase in the number of six-year-olds diagnosed with ASDs in schools across the nation, according to a 2007 report by the U.S. Department of Education. ASD refers to the three types of autism: autistic disorder, known as classic autism; pervasive development disorder, or atypical autism; and Asperger’s syndrome. On average, about 1 in 110 children suffers from ASD, according to the Center for Disease and Control. That means more than 500,000 kids this year alone.
“No one really knows why,” said Rosemarie Manfredi, Psy.D, assistant professor of psychology and faculty and curriculum coordinator of ASD programs at Chestnut Hill College (CHC), about the seeming recent emergence of autism.
One reason is that physicians have become better at diagnosing autism, she said. Until 1980, autism was unlisted in the Diagnostic and Statistic Manual of Mental Disorders. In the past, individuals with ASD might have been wrongly diagnosed with schizophrenia or Down syndrome. Now, physicians know behaviors in babies like significant delays in speech development, a lack of gestures like pointing, problems with eye contact and more are indicative of ASD.
For Chestnut Hill resident Roy Diamond and his non-profit organization, Autism Living and Working (ALAW), developing opportunities for people with autism older than 21 and advocating for better understanding of autism disorders are their most important missions. ALAW members oversee five houses in the Greater Philadelphia area where autistic adults can live, some alone and others with the access to providers who care for them if needed.
As president of ALAW and the father of a 21-year-old autistic son, Jacob, himself a client of the group, Diamond has the chance to see firsthand how important the group’s missions are to the families it serves. Though his son is unable to speak, at the farming program he participates in near Monument Road in West Philadelphia, Jacob can participate in physical activities like planting with other kids. Something so simple can be critical to developing a productive adult life for individuals with autism.
“It’s a life-changing type of thing,” said Diamond about his son’s diagnosis. “You try to energize as a family, and you try to fix it. Then you get to a point where you realize no one has figured out how to fix it … and then you try to provide the best life you can for your child.”
Because he was known for his work with his company, Diamond and Associates, a Philadelphia-based firm that focuses on the development of affordable housing, a member of ALAW reached out to him in the mid-’90s. They thought his experience with using tax credits to fund development projects could help their mission. It was a perfect fit for Diamond. Here were intelligent parents with autistic children in, approaching or beyond their 20s dealing with the same challenges that the Diamond family faces today.
Founded in 1995, ALAW was formed to address the needs of adults with autism, including the need to have households apart from their parents and to have adequate supports to live and work in the community and avoid institutionalization. Some of the roommates who live in the five homes where ALAW serves as property manager work at jobs and pay taxes.
“The life of the adults with ASD who live in homes that ALAW owns and/or manages is the same as any adult’s life with varied job/work, volunteer, social, family and personal health responsibilities,” said ALAW member Becky Lynne Willmot Gamble, “except that the adults with autism/ASD have staff helping them accomplish all their tasks and life duties. The staff is paid for by a Medicaid waiver,” funded both by the state and federal government.
For the most part, the adults have simple labor jobs like janitorial work or dishwashing. But a few have home businesses like web design, computer data entry or making chocolate-covered pretzels. There are also a few undergraduate and master’s level college students. (Due to recent cuts in state funding, though, many services offered are in jeopardy of being lost.)
Today, Diamond said, there is a robust community in terms of the families, scientists, physicians, therapists and educators devoted to serving the needs of those suffering from the ailments of ASD.
And as public awareness of the issue grows, institutions like Chestnut Hill College are taking steps to further understanding about ASD.
Launched last year, CHC Autism Initiative Network offers an education and training program for professionals who may come into contact with autistic individuals during their daily work.
The network’s initiative coordinator is Rosemary Mullaly, a former lead special education counsel for the Penna. Department of Education as well as a Wyndmoor resident and mother of an 11-year-old son with ASD.
As more of our young people are diagnosed with life-changing disorders like ASD, groups like AWAL and institutions like CHC stand as a ladder of hope for those trying to climb out from under the burden of living with a disability in 21st-century America.
For more information, email firstname.lastname@example.org or call 267-322-5800.