An autistic child graduates - What's next?
In the next 15 years, an estimated 500,000 autistic children will cross a major hurdle and graduate out of school systems in the U.S.
Sadly, this won't bring the gold medal reward most parents of autistic children hope for. Instead, the accomplishment will bring these families to the start of a new obstacle course that may prove more challenging than the one they just worked their way through.
Gene and Mary Rossum of Brandon found themselves asking, "Now what?" when their autistic grandson, J.J., finished high school a couple of years ago.
J.J. was born in 1988. His grandparents, who have been his main caregivers, noticed many developmental red flags during his early years.
"He developed only a few words and mostly used gestures," Mary recalled. "At age 1 1/2 he just quit talking. He didn't look at you, but would look past you. We thought he wasn't hearing."
But a hearing test showed that J.J. was hearing just fine.
While numerous medical appointments pointed to autism, the boy wasn't officially diagnosed with it until he was in 2nd grade.
During his years at Voyager Elementary, Discovery Middle and Jefferson High schools, all in Alexandria, the Rossums maneuvered through a complicated obstacle course of specialized services and programs, jumped over funding hurdles, teamed up with personal care providers and much more.
They tried to gather as much information as they could through reading, attending workshops and seminars, reaching out to others with similar issues, etc.
"It went all right, but it could have been better," Gene noted of J.J.'s school years. "The schools do the best they can with what they have."
Students like J.J. can stay in high school until age 21. J.J. stayed one extra year at Jefferson after his classmates graduated, but after that, the Rossums felt there was nothing left for him in that setting.
They then found themselves asking the question: What happens when kids become adults and age-out of the education system?
THE NEXT STEP
Programs for adults with autism are scarce, and funding for adult services is even harder to find.
There are currently only about 3,500 programs nationwide for autistic adults compared with 14,400 for children. Many of the adult programs are only daycare type settings that don't allow the individuals to grow and contribute to society.
According to one study, only 20 percent of autistic adults in the U.S. are employed, and at least 60 percent of those are believed to be underemployed or paid below market wages.
According to the Rossums, J.J. - like many other autistic individuals - is very skilled at certain tasks.
"He's a slow learner, but once he learns to do something, he does it very well," Gene said. "The skills are there, and he has some acute abilities. That's the way it is with many autistic people - they are highly skilled, good workers, and employers are happy to have them."
J.J. had proven his work ability during summer employment at the Douglas County Developmental Achievement Center (DAC) in Alexandria where he was very successful.
Like most autistic individuals, his struggles tend to come in the areas of social interaction. Instead of speaking, he often hums and makes other guttural noises. He communicates with wrist-bands and with a special keyboarding device. He does well with repetition and knowing what to expect, and doesn't like surprises or lots of noise and commotion.
The Rossums looked everywhere for a program that would give J.J. the care and opportunities they were hoping for after high school. They weren't alone in their endeavor.
Autism diagnoses have soared since 1980 - the 0.5 diagnoses per thousand in the 1980s rose to 9.0 per thousand in 2006.
If the Rossums did find a program that was promising, it either had a lengthy waiting list, or was cost prohibitive. According to a Harvard University study, raising and caring for an autistic child throughout his lifetime can cost a parent $3.2 million, compared to an estimated $222,000 to raise a typical child through age 18.
"This is a big issue in rural Minnesota," Gene said. "We couldn't find anything suitable in this area that could do what we wanted done for him. We really didn't know what we were going to do."
The Rossums found hope in a group home setting in Moorhead, where J.J., now age 22, has resided for the past year and a half.
He works at a window company three days a week putting together the packets that go with windows.
The home he lives in is part of a 20-home group that shares an activity center where they join for social activities, crafts, games, etc. He also goes to Minnesota State University-Moorhead two days a week where students in the speech department work with him.
"He's been involved in Special Olympics and all kinds of sports and activities," Mary said. "We could never do that for him if he stayed with us. We knew it wouldn't be good for him to stay living with us, but we wish he was closer."
Three bills known collectively as TEAM (Transition toward Excellence, Achievement and Mobility) were introduced in Congress recently in an attempt to improve and coordinate efforts of state and federal groups, programs and agencies in assisting youth with significant disabilities to successfully transition to adulthood.
TEAM legislation would provide support and incentives to encourage states to develop services that would help these youth attain employment, live independently or optimize self-sufficiency.
The ABLE (Achieving a Better Life Experience) Accounts Act, introduced into Congress last session, would allow individuals with disabilities and their families to open tax-exempt savings accounts to save for expenses they'll experience over their lifetimes without affecting eligibility for public funding.
On the state level, Community First Choice (CFC) - part of the health reform package - is a Medicaid option that would offer states an enhanced federal Medicaid match if they opt to cover services and supports to disabled individuals as an alternative to institutionalization. It will become available for states to take up on October 1.
Autism Insurance Reform Legislation, which has been passed in 24 states, prohibits many group insurers from withholding benefits, including behavioral therapies, from autistic individuals. These therapies - which can cost around $50,000 a year out-of-pocket - are important to maximizing an individual's potential as an adult.
WHAT IS AUTISM?
Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).
The disorder affects communication, learning, sensory processing and social interaction, with severity varying dramatically from person to person. It affects an estimated 1 in 110 children nationally (1 in 70 boys) with numbers rising more than 10 percent each year. It is more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism.
A free mini conference titled "Increased Autism Awareness: Better Understanding of Life with Autism" will be held Saturday, April 30 at Alexandria Technical and Community College's Infor-mation Technology Center Auditorium, Room 743.
Doors open at 8:30 a.m. The keynote presentation is at 9:15 a.m. with breakout sessions held between 10:15 a.m. and 12:30 p.m.
Keynote speaker Ruth Wiseman is the parent of two children, one diagnosed with autism at age 2 1/2. She will share her family's story of life with Jason, whose self-injury spurred creative ideas and networks of support.
Wiseman has presented to school systems, university students and community groups since 1992. She has been a special educator, service coordinator, state program team leader and is currently president and CEO of Chileda Institute.
She holds a master's degree in industrial-organizational psychology from Tennessee's Austin Peay State University and a bachelor's degree in special education from the University of South Florida. She and her husband live in La Crosse, Wisconsin.
Other presentations at the conference include:
Evidence Based Instruction for ASDs by Nancy Przybilla, autism specialist for School District 206.
iPads, Apps and Autism, by Jonathan Campbell, assistive technology specialist at Simon Technology Center, PACER.
Reflections and Answers from Young Adults Living with Asperger's - a panel moderated by Helen Wagner of Andhe's Disability Services.
Preregistration is recommended, call (320) 763-9228 or email firstname.lastname@example.org.
The conference is made possible with proceeds from the 2010 Alexandria Area Autism Awareness Walk. The 2011 walk is set for July 30.