Report: State Must Strengthen Bridge to Adulthood For Young People With Autism

Connecticut must strengthen the bridge between the teen and adult worlds for young people with autism so more of the nearly 12,000 students on the autism spectrum can live and work independently as they reach their early 20s, a state study concludes.

HARTFORD — Connecticut must strengthen the bridge between the teen and adult worlds for the nearly 12,000 young people with autism, so that more can live and work independently as they reach their early 20s, a state study concludes.

A recent study by the legislature’s program review and investigations committee found that “transitional services” — programs that try to prepare teenagers with autism for an independent life — generally start now at age 16 in schools, but need to begin years earlier.

The study also said that the state should increase housing and job-placement assistance to young people with autism, and that services in general for 18- to 21-year-olds need to be expanded in the face of a dramatic rise in the number of people diagnosed with autism. The full report is at http://www.cga.ct.gov/pri/2014_ASD.asp.

Fifteen years ago, the federal government estimated that 1 in 166 children had autism. Now, whether it is environmental, genetic, or the result of better reporting, more awareness, or a broader definition of autism-spectrum disorder, the number is at least 1 in 68.

“New and creative ways of developing housing solutions must be examined to address the oncoming wave of individuals with autism-spectrum disorder,” the study says.

“The numbers are screaming for us to expand transitional services,” said Rep. Mary Mushinsky, D-Wallingford, ranking member of the program review and investigations committee, and a past co-chairwoman.

The study recommends creating two jobs — housing and employment coordinators at the Department of Developmental Services. The DDS provides an array of counseling and other support for people with autism through a federally funded program, but there are less than 135 slots, and more than 400 families are on the waiting list.

The panel will probably propose bills based on the recommendations and hold a public hearing in February.

Carol Marcantonio, the mother of an 11-year-old boy with autism whose journey to find adequate treatment for her son, Evan, was documented in a Jan. 4 story in The Courant, has often said that autism “treatment” should focus more on vocational skills, following directions, hygiene — everything that will set up the children for a better shot at independence as young adults.

She agreed that the work needs to start much sooner.

“If the planning begins at 16, then the kid is going to be almost ready to graduate by the time the program is really up and running — and that’s too late,” said Marcantonio, of Meriden.

She said that the vocational programs need to be flexible enough so that they can challenge and benefit both the higher- and lower-functioning children at the same time. Some of the programs offer little more than envelope-stuffing or organizing the magazines at department stores.

Mushinsky said that some of the children on the spectrum, especially those with Asperger’s, excel in the classroom but are deficient when it comes to basic social skills and need help recognizing cues. The report says that the academic support that the young people receive in high school should actually be relaxed as graduation approaches, in favor of vocational support.

Under state law, young people on the spectrum may remain in high school until age 21. They usually spend the extra three years in “transitional academies” that are held away from the high school campus, sometimes at colleges or in busy neighborhoods. The report said that there are several excellent programs that mimic college and work life. These need to replicated, the report says.

The program review committee’s analysts interviewed parents of children on the spectrum in Wallingford and came away with a dominant message:

“Parents said it seemed like they fell off a cliff after their child turned 21,” said Mushinsky. “We need to get a better result.”

Several advocacy organizations throughout the state helped the researchers survey parents of teenagers and young adults aged 15 to 25, with a focus on “your experience preparing for transition in high school and the years after high school.”

Mushinsky said that a housing coordinator on the state level “is critical because it’s hard enough for any young adult to get his or her first apartment and deal with landlords. It’s especially hard for people on the spectrum, who have to learn how to negotiate an independent life. To land a job, you need stability, and that includes safe and reliable housing.”