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Graduating Into the Unknown: Idaho Teens Come of Age in the Generation of Autism

When state programs end, parents are left in the lurch

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It's one of those rare, quiet moments at Estevan Barrera's school. Barrera's classmates have left for the day and he has his teacher, Eric Lichte, or simply Mr. Eric, as Barrera calls him, all to himself. Lichte and Barrera's parents sit around a classroom table discussing the four years of strides Barrera has made in Lichte's class and what the future holds after Barrera graduates in June.

The meeting isn't part of Barrera's usual routine. He asks when he can go home. And he circles around the activity table where Lichte and his parents are conferencing. Voices talk about the future, plans and the unknown. Barrera circles again then pauses for a moment. He stands above his seated stepfather, bends his neck and quietly kisses his stepfather's balding head.

Barrera moves around the table and pulls out a chair he neatly lined up earlier that day next to Lichte. He sits down.

"You're cute!" Barrera tells Lichte.

"Thank you, Barrera. But we don't tell boys they're cute. What do we tell them?" Lichte's gentle voice redirects Barrera to find the best way to pay a compliment to a fellow gentleman.

Barrera's parents count the days until that gentle, guiding voice will no longer be a part of Barrera's routine. The date stands as a milestone on most parents' calendars, but Graduation Day 2012 marks unchartered territory for the Millers.

Barrera, 21, shares his coming-of-age story with a boom of cohorts that joined the swelling number of children diagnosed with autism in the 1990s and 2000s. Many have grown up under public education and Medicaid-funded supports that either disappear around the age of 21 or have fallen victim to recent budget guts. That leaves advocates wondering if the state and local communities can build the village needed to support the anticipated surge of autistic adolescents slated to transition into adulthood.

"I don't know if our community will be ready for it," said Meredith Adams, a Boise advocate for children with disabilities.

In 10 years, Adams' son, Bridger, matriculates through the public school system that has buoyed him and the family through the initial diagnosis and years of special education. But schools give children like Adams' son more than a home to learn. The buildings house experts in her son's diagnosis and specialists who know how to turn delays into adaptations and disabilities into abilities.

"We were talking about what we wanted to do with the class. And that's teaching independence," Lichte said of the Nampa classroom that usually buzzes with the kind of activity you see in the real world. Students who occupy a sort of limbo between childhood and adulthood shuffle around, planning menus, setting budgets and lining up chairs.

"But not all of our students are going to be independent, so we need to instill some confidence," Lichte said.

More 500,000 children with autism will come of age during the next decade, according to Autism Speaks. The national advocacy organization for people with disabilities estimates that 1.5 million adults with autism already live in the United States. Idaho Autism reports a 2,800 percent increase in the number of children diagnosed with autism between 1993 and 2007.

"We know that as a society we are ill prepared to deal with the number of people with autism who will be entering adulthood. We've seen an increase in the number of children diagnosed with autism in the last decade. At the same time, the budgets have not increased. In fact, they've decreased," said Lisa Goring, vice president of family services with Autism Speaks. "When a child is school aged, they have educational entitlements that entitle them to services. But once some graduate, those entitlements are gone."

The Idaho Department of Health and Welfare doesn't track service enrollment for people with autism. So it's difficult to estimate how many adults with autism are using services, how enrollment has changed, or if Idaho has seen a boom in severe autism diagnoses and if these diagnoses will translate into a surge of young adults needing additional supports in the coming years. But the Intensive Behavioral Intervention program offers some indication. The Medicaid-reimbursed IBI program offers intensive therapy to children with developmental disabilities who display challenging behaviors. The often daily, one-on-one therapy offers individualized interventions aimed at helping a child function at home and in the community. The program serves children with a range of disabilities, but Tom Shanahan, Health and Welfare spokesman, said many of the kids enrolled have an autism diagnosis. And the state has seen the enrollment in that program swell. The program didn't even exist before 2002, and during its inaugural year, enrollment hit 193. By 2011, enrollment jumped to 587.

Advocates say those numbers offer some insight into what's around the corner. The IBI program mostly serves individuals at the severe end of the autism spectrum. They say it's those children who are going to be in the most need of additional supports as adults. The IBI numbers suggest a swell in autism around the state and an impending surge in the number of adults needing state-funded services in the future. But the ever-evolving diagnostic criteria for autism and heightened awareness raises questions as to whether autism is increasing and if the state will see a boom of adults needing complex, lifelong care.

"I think that there are a lot of questions about autism. Is there an increase in autism or are we just better at diagnosing autism?" Shanahan asked.

Once considered a rare disorder, the 1990s saw diagnoses skyrocket. The Centers for Disease Control and Prevention report that one in 88 children now has autism or a related disorder. That's up 22 percent from 2002. And the CDC estimates that as many as one out of 54 boys now has the developmental disorder that stunts communication, motor and social skills and sometimes causes difficulties processing sensory input. Schools have mostly offered the bulk of supports to these kids and their families, but once children with autism are phased out of the public-education system, they face a horizon of uncertainties.

"This is a population that is forgotten about because when they reach adulthood, they sit around at home," said Jerry Todd "J.T." Miller, Barrera's stepfather and member of Idaho Parents Unlimited, a support organization for families living with autism.

Autism Speaks reports that about 56 percent of people with autism graduate from high school, but what happens beyond that varies as much as the disorder itself. People with autism reside somewhere on a spectrum in communicative, social and developmental ability. For some, the manifestation of autism remains subtle throughout life, bypassing the diagnosis of doctors, the attention of teachers and the understanding of family and friends. Sometimes it takes a diagnosis of a child with autism for these individuals to note that something with them might also be amiss. Others like Barrera live in the more extreme limits of the continuum. Some remain nonverbal and rely on lifelong supports.

"One of the biggest challenges facing people with autism is underemployment and unemployment," Goring said. "And then there's aging parents who are concerned about what will happen to their children when they are gone."

With so many living somewhere along the spectrum, it's hard to define the typical post-high school life of a person with autism, said Katherine Hansen, executive director of Community Partnerships of Idaho. One study found that 18 percent of adults with autism were employed and 14 percent attended college. Most adults--56 percent--utilize day services of some kind while 12 percent have no activities at all. Autism Speaks reports that the unemployment and underemployment rate for adults with autism runs as high as 90 percent.

"It can be very isolating," Goring said of the closed doors that often meet a student with autism at the end of the graduation line.

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