Students with autism get ready for life after high school
TOWNSHEND -- Before Lora Barrows' son received his diagnosis of autism spectrum disorder, the family's life was filled with confusion, frustration and uncertainty.
Barrows' son, Ben Davis, now 17, stopped talking at about 18 months, and over the next few months Barrows noticed her son withdrawing, and becoming less responsive and advanced at a time when he should have been learning and growing.
It would take another two years before a specialist finally determined that Ben had an autism spectrum disorder.
The diagnosis was a relief, in a way, Barrows said, because it at least allowed her to begin lining up services for her son and the diagnosis helped her get a better of understanding of what the near future held.
Now, as Ben gets ready to graduate high school, Barrows said her life is again filled with questions and doubt.
Federal education law requires school districts to meet the needs of all students, and so until they are 22, students, and their families, are assured of a daily routine.
Now with the number of children with autism on the rise, schools and families are developing strategies to better prepare for life beyond high school.
A growing need
Autism spectrum disorder, and autism, are terms used to describe a large group of brain disorders that affect children along a varying spectrum.
Some children with autism have particular talents, for music or language, for instance, and can thrive in a classroom with accommodations.
Others are not able to speak or communicate without help and need to spend most of the school time in programs for children with severe disabilities.
Many children and young adults with an autism spectrum disorder fall somewhere in between.
Over the past decade the number of children diagnosed with autism has increased.
Last month the Centers for Disease Control and Prevention announced that one in 88 children has been identified with an autism spectrum disorder.
And for boys, who have a much higher rate of autism diagnosis, the CDC says the number is one in 54.
The new estimate, for all children, marked a 23 percent increase since the CDC last reported on autism in 2009, and a 78 percent increase since the first CDC report on autism was issued in 2007.
At the same time, more and more public schools have developed programs to address the growing public health challenge, and high schools now are developing programs to help teenagers with autism spectrum disorders get ready for life beyond high school.
The trajectory of Ben's life loosely parallels the increase in diagnosis, and society's growing acceptance and understanding of the disorder.
Barrows said in mid-1990s, when she was trying to determine what was wrong with her son, doctors and specialists who she worked with knew less about autism.
There were fewer tests for it, and she said a doctor at Dartmouth-Hitchcock Medical Center only made the final determination after she had spent a frustrating and exhausting year moving from one office to another.
"Autism was new for everybody back then," she said, in an interview at her home in Wardsboro. "I had heard of it, but you usually don't find out about anything like that until you have to deal with it."
Over the years Ben has moved into and out of different programs, and this year he is at Leland & Gray's Intensive Needs, or IN, program.
Prudence Baird, who is a para-educator at Leland & Gray and has a son at Brattleboro Union High School with autism spectrum disorder, said the IN program works to prepare the students for their transition out of high school.
On Wednesday afternoons the class leaves Leland & Gray to visit sites in the area like the Brattleboro Museum & Arts Center, Rescue Inc. and the Latchis Theater.
During those visits, Baird said, teachers and para-educators get a chance to observe the students in different situations, and that can sometimes help them come up with ideas for internships or even jobs for after high school.
And at the same time, the visits help professionals and business owners become familiar and comfortable with the students.
"The response to our students by those in leadership positions has been overwhelmingly positive," Baird said. "I really feel that, upon matriculation and graduation from Leland & Gray, our students will already be fully functioning members of their communities, able to contribute and lead fulfilling, productive lives."
With the number of students diagnosed with autism increasing, Vermont is developing programs to meet the needs of those students and their families.
Vermont is one of a handful of states taking part in a national initiative called, Think College, which is trying to establishment programs in post-secondary schools for students with disabilities.
There are currently Think College programs at University of Vermont and at Johnson and Castleton state colleges
John Spinney, a secondary transition consultant with the Vermont Department of Education, said the Think College program is just one example of how the state is changing its thinking about how people with disabilities move from the school system into society.
"People are realizing more and more that support and training for students with disabilities should extend beyond high school," Spinney said. "If you look at what student support looked like 10 years ago, it is amazing how different it looks now."
Under federal special education law high schools have to develop a transition plan for students on an individualized education plan.
Sometimes, Spinney said, a parent might underestimate what a child with disabilities is capable of, and other times a school has to work to convince a parent to be realistic.
And as the number of students with autism leaving high school grows, Spinney said he expects the options to increase in the coming years to meet the needs of that population.
"The level of support and knowledge of different disabilities has dramatically improved," said Spinney. "There is more support for college students with disabilities. It is becoming more common place and people need to get their heads around it."
But Spinney warns that college is not for every student with a disability, just as it is not always the best choice for a non-disabled student.
When college is not right for a student, state agencies like Voc Rehab can help with employment; and Families First, Youth Services, and Health Care and Rehabilitation Services can get involved to help with transportation, employment and housing.
Barrows, who lives in Wardsboro, is just starting to think about what Ben is going to do after he leaves Leland & Gray.
Ben's sister, who rides the bus with him every day, is graduating this year and so transportation is going to be an issue next year, even while he is still at Leland & Gray.
Like any other teenager, Ben has his good days, and his bad days, his mother said, and like his peers he can get lazy if he is not pushed a little.
Barrows says her son will most likely have to live at home, and she is preparing for that, but she is looking forward to beginning the transition planning.
"I'm optimistic. We have come a long way, but a lot depends on him," she said. "It's hard to plan for the future when you don't know how it's going to be."
Stephanie Betit-Hancock, who is director of the IN program at Leland & Gray, said each child with a disability has his or her own specialized needs and strengths.
As each student approaches the end of their high school career the parents, school and student, work with outside organizations to come up with a reasonable plan.
Whatever path is ultimately chosen, Betit-Hancock said, it is important to realize that the day is coming.
"Families don't always understand the difference, and they expect the same routine," she said. "It is our job to make sure they have a plan and make things happen. Sometimes families are not prepared for the transition and they go out in the morning to catch the bus, but the bus isn't coming anymore."
Howard Weiss-Tisman can be reached at firstname.lastname@example.org, or 802-254-2311, ext. 279.
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