Southern California mom Rita Meza has six kids. Her oldest, Samantha, was diagnosed with classic autism at age four and 1/2. Samantha is now 24-years-old and in college studying to be a veterinary technician. While the road for Samantha’s transition to adulthood hasn’t always been easy, Rita’s message to parents is, “Don’t give up.”
Few studies seem to point to what happens once autistic youth reach adulthood.
At the forefront of this research is Dr. Paul Shattuck, whose groundbreaking study on the topic was published recently in Pediatrics. In this study, Dr. Shattuck’s team analyzed national data collected over a period of ten years.
The results showed slightly more than half of the youth with autism who left high school within the past two years had no connection with work, college or vocational training. During the first six years after high school, that number decreased to 35 percent. For Hispanic youth with autism, the rate of total disconnection was higher, at 55 percent.
Dr. Shattuck notes, “Why? We don’t know yet.” He adds it’s clear that income is certainly a strong indicator in the trend and that widespread research shows “most disparities that Hispanics encounter are driven by lower income.” For now this study concludes, “further research is needed” to understand how to put in place transition programs that help autistic students connect better to work opportunities or college.
Carol Glazer, Executive Director of the National Organization on Disability, describes the point at which autistic kids lose their federally mandated support as the so-called ‘cliff.’ At about the age of 22, or the transition age, states become responsible and provide disability funds. But Glazer points out that “during times of austerity, these programs are oftentimes the first to be cut.” Families are left to navigate the “patchwork system,” he adds.
Fortunately, for those living in California, many kids with autism can receive lifetime support and services through state funds, depending on the diagnosis. Regional Centers have been set up around the state to provide information, resources and connections to other parents. It’s the only state with such a program. Maura Gibney, program director for the South Los Angeles Regional Center, says this type of program is especially needed in Hispanic and/or lower-income communities.
“When you are talking about developmental disabled adults,” says Gibney, “they already face so many challenges in their life, and when you add into their challenges the fact that they live in a low-income area, very high-crime area and that they are oftentimes attending some of the most low-performing schools in the district, that makes those challenges even harder and just compounds those challenges for them.”
In California, the legislature has established the Senate Select Committee on Autism and Related Disorders to better assist individuals with autism and their families. One of the main issues it hopes to address is access to adequate employment opportunities.
Rita Meza says many Hispanic families also face the added challenge of not being able to speak English. Meza says it is crucial for parents to connect with other parents who have faced a similar path. Even still, access to information can be challenging. One California study showed that for Latina mothers who were active in Spanish-language groups, the unmet need for access to information ranked at 91.5 percent of those who were surveyed.
Meza encourages parents to pay attention to their child’s interests early on (but not to dwell) to cultivate potential career pursuits. For parents facing the challenge of a child with minimal communication skills, families can still get key information about that child’s interests. Meza says, “they’re still communicating with us through their behavior, through temper tantrums, through smiles, through just their body language.”
Lisa Goring, Vice President of Family Services at Autism Speaks, says there is no one solution for all cases. Depending on how the child’s level of autism impacts him or her, programs for transition will differ.
“When you think about transitions, the end goal is that the young adult can be as independent as possible.” That could mean a job or even volunteer opportunities. Goring adds “it’s important that people with autism are a part of their community, that they know people in some of their local stores, or at the library, or at the YMCA or the gym.” It’s important to keep in mind too, Goring adds, “it takes practice – in some cases it may take some time for them to feel comfortable in those situations.” Autism Speaks offers a bilingual response team as well as transition tool kits.
Autism Speaks: Autism Response Team
Families can call the Autism Speaks Autism Response Team at 888-288-4762 or en Español 888-772-9050, or email email@example.com
This article was produced as a project for The California Endowment Health Journalism Fellowships, a program of USC’s Annenberg School for Communcation & Journalism.