Guido Abenes (pictured) appreciates their concern, but he'd really like his parents to stop worrying about him.
He's 25, he says, and he's doing fine. But he's also autistic, part of the generation of young adults who were born during the first big wave of autism cases in the United States two decades ago and are now struggling to strike out on their own.
"I tell them sometimes, 'Stop it, I'm doing things, I'm resourceful,' " said Abenes, who is a student at Cal State East Bay. "They're getting the message, I think. But they still worry."
Abenes, who wants to be a therapist someday and travel the world, is fortunate. He joined the College Internship Program in Berkeley, which provides him with a two-bedroom apartment he shares with a roommate, along with intensive, daily academic and developmental support to help him continue to thrive into adulthood.
But Abenes' situation is unusual, say autism advocates and experts, who are bracing for a flood of adults with autism who lack the support they had as children, and are entering a world that isn't ready for them.
It was in the late 1980s and early '90s that rates of autism started skyrocketing in the United States. A condition that once was considered rare, with fewer than 2 cases per 1,000 births in the United States, is now thought to afflict 1 in 88 children, according to the Centers for Disease Control and Prevention. It's unclear exactly what has caused the increase, but factors could include greater awareness and better diagnosing of the condition, as well as an actual rise in cases, perhaps related to environmental factors.
For those born in that first wave and now entering adulthood, it's a tough, uncertain future. Some, like Abenes, will go to college or find jobs and eventually move out on their own.
But most will not, studies show. Most will continue to live at home and will, at best, find part-time, minimum-wage work - or no work at all. Many will suffer setbacks in their condition. Two recent studies found that only about a third of autistic young adults had jobs or went to school.
"A majority of our adults are underserved or not served at all. They can't access the same services as adults that they had as children," said Jim Ball, board chairman of the Autism Society, a national advocacy group. "We are doing a lot for our kids, but these kids are going to live to 80 or 90 years old - they're going to live the majority of their lives as adults. What are we doing for them in that realm?"
Twenty-two years old is an important turning point for many young people with autism. That's when they officially age out of the public school system that offered them educational and other supportive services.
Kids with intellectual disabilities - most notably, an IQ under 70 - often have post-high school opportunities for continued improvement and some measure of independent living. Most of them will continue to get supportive care daily for the rest of their adult lives from state and federal programs.
And the young people at the opposite end of the spectrum - the ones identified as having Asperger's syndrome, a mild form of autism, who may have above-average IQs or skills that will aid them in college and careers - often manage adult life just fine.
It's the ones in the middle who suffer the most, autism experts said. They don't have enough of a disability to get major supportive care, but they're clearly disabled enough that they have a hard time finding, and keeping, jobs or attending college classes.
"These are kids who seem like they could do things and be successful, and they just end up staying at home because there are very few resources for them," said Dr. Carl Feinstein, director of the Stanford Autism Center at Lucile Packard Children's Hospital.
"Their parents are frustrated because they don't know how to help and they aren't so happy with their kids living in their home," he said. "Meanwhile, these kids grew up thinking they would have a driver's license and an apartment of their own, and they'd get married and have all these things that aren't happening."
That's where something like Berkeley's College Internship Program comes in. The program was started in the 1980s on the East Coast by a man who was diagnosed with Asperger's in his 50s. It serves young adults ages 18 to 26 who have autism or other types of learning disabilities, many of whom fall in that middle range of needing support.
The goal of the program is to provide the support services these young people may need to be successful in school and start a career, as well as teaching life skills to help them become independent adults.
The students live in housing provided by the program in downtown Berkeley, and they usually attend classes at nearby community colleges. At the program center, students get lessons in cooking and banking and other basic living skills. They learn how to budget their time, how to apply for jobs and how to get along with co-workers and bosses.
But it's expensive: The program costs $30,000 to $70,000 a year, not including housing or tuition at other academic institutions. Scholarships are available and insurance may cover some or all of the expenses.
For those who can afford it, or whose parents have the time and energy to seek the help, there are other, similar programs. Many college campuses, including Cal State East Bay, offer extra services for autistic students.
Some businesses are starting special programs for hiring autistic employees, especially if those employees possess skills like focus and an attention to detail that can come hand-in-hand with autism. One company, Palo Alto-based Semperical, is based entirely around a model of hiring high-functioning autistic employees as test engineers.
But those jobs and support programs aren't large and there aren't many of them. Meanwhile, the group of autistic adults needing these services is only going to grow. The first generation is entering its 20s - but they'll be hitting middle age soon enough, and there are even larger generations on their heels.
It's not just a problem for the autistic children and adults, but for their families - especially for the parents, many of whom worry they won't be able to care for their adult children much longer.
"I hear from parents in the Baby Boomer generation who have kids in their 30s now," said Kurt Ohifs, executive director of Pacific Autism Center for Education in Santa Clara. "They come to me and say, 'I'm afraid to die, because who's going to care for my son or daughter?'
Saturday, October 6, 2012
San Francisco Chronicle:
Posted by BA Haller at 11:34 PM