It is estimated that 2,100 students diagnosed with an autism spectrum disorder attend school in San Antonio. The availability of teachers and specialists can help them progress and develop their unique talents, but once they reach the age of 22 and are no longer able to attend school, they walk into the unknown.
With the estimated number of children being diagnosed with an autism spectrum disorder now at one in 88, the number of adults with autism aging out of school is also increasing, Steven Enders, president and CEO of the ARC of San Antonio told a group of advocates and social service workers at a working breakfast at the Bright Shawl this morning. Those aging out have grown from around 100 per year to more than 125 per year, he said. And the costs aren't trivial. Not only does the change frequently mean a parent has to quit their job to care for the adult child at home, but a lifetime of care for a person with autism averages $3.2 million, all told. “Communities like San Antonio need to ask what we can do locally to effect that number,” Enders said. “We need to start doing that now.”
Rita Kosnik, professor of management at Trinity University and mother of a child with Asperger's syndrome, said that for these students high school graduation is nothing to celebrate. “It's a curse. They go into a no-man's land. They get turned down for services day after day because they can walk and they can read.”
Kosnik estimated that as many as 88 percent of high-functioning autistic adults today are underemployed, living in basements and guest rooms and “doomed to be beneficiaries of our Social Security system.”
Small parent-led groups, such as the 500 Olmos Club that Kosnik leads with two other parents, have helped a handful locally, but conference speakers agreed that a huge need exists in San Antonio. “These people deserve to be happy and have some sense of success,” said Rosario Farahani-Espinoza, a retired teacher with two autistic children.
A program out of Phoenix provides some clues as to where a coalition here could potentially take things.
Introduced by SA City Manager Sheryl Sculley, Denise Resnik, co-founder of the Southwest Autism Research and Resource Center, talked up her group's quick successes — thanks in part to corporate donors: a 1,800-square-foot campus, regular research and pharmaceutical trials, and — perhaps most impressive — an employment rate of 65 percent. (The average for autistic adults, is about 10 percent.) Students there have also contributed 30,000 hours of community service in the past three years.
“At times I feel like we are really with young adults exactly where we were 20 years ago with early intervention,” Resnik said.
Dan Burns, chair of the Autism Trust USA and contributing editor at the online news source Age of Autism, made the drive from Dallas for the breakfast. He's been working on a possible partial solution: a summer camp in Austin that will gather for the first time this summer, develop into a full-time vocational residential community in the fall, and then, hopefully, develop into a college campus.
It's known as An Independent Me, and it already has some permanent and part-time campers lined up for the summer. “We want to get this going anyplace it's needed,” Burns said. “I'm the Johnny Appleseed going out and trying to get this going, wherever we can find the energy and the resources.”
From the organization's website, we learn:
This extraordinary setting in Cedar Park, Texas includes an ranch house on 4.5 acres of pastureland plus a horse barn – a fenced rural retreat in the middle of this booming Austin-area subdivision offering opportunities from high-touch to high-tech. Campers can interact with horses, sheep and chickens and cultivate gardens; take art and video classes on site; and participate in camper-guided tours of YouTube, Facebook, and the Web. Participants can also elect to take classes at the nearby Austin Community College (ACC) campus. AIM will work with Texas Department of Assistive and Rehabilitative Services (DARS) as well as neighborhood restaurants and other businesses to provide job opportunities for campers. Transportation to and from school and work will be provided by the camp.
Angela Day, AIM Board President, says “This is an extraordinary community. Vocational, educational, and life skills training is designed specifically for the needs of those on the entire ASD spectrum, from non-verbal autism to high-functioning Aspergers. We are excited about our exceptional staff, who will make sure each resident and family member who walks through our doors feels safe and secure, and sees a bright future.”
AIM staff have extensive experience in job coaching. The community will maintain a 3:1 ratio (one coach for every three residents) to provide optimal attention to each individual. AIM has the resources and space for up to five adults to live on the premises full-time and 20 day-time members. There is no maximum time set for full-time residents to live at AIM, and space is filled on a first-come, first-served basis.
AIM’s opening in June 2012 as a summer camp that will feature different jobs for campers. Residents will participate in vocational assessments to determine their interests, aspirations, and talents, then work with DARS or Arcil (a developmental disability job placement) to find a job that fits their skills and desires. Campers may visit for one week or stay through the summer until mid-August. Campers may register for Summer 2012 at EventBrite.
Something to watch, for sure.