Health & Fitness

What now for autistic people no longer in school?

Faith Fellowship School teacher’s assistant Lauren Gonzalez, 20, helps first graders Jenesis Martinez, (left) and Yosbel Marichal (right).
Faith Fellowship School teacher’s assistant Lauren Gonzalez, 20, helps first graders Jenesis Martinez, (left) and Yosbel Marichal (right). skaestle@miamiherald.com

Lauren Gonzalez looks and acts like a teacher — the hip kind you hoped to get in elementary school.

Wearing skinny jeans and white Converse sneakers, Gonzalez hands out the learning activity to the class of second-graders dressed for National Pajama Day, and moves around the classroom. The girl in the pink Hello Kitty pajamas is frustrated. Lauren squats down next to her, and helps her through it. Seconds later, a boy calls, “Lauren, can you help me?”

Lauren, 20, is an assistant to Gertrudis Marin, a reading and language-arts teacher at Faith Fellowship School in Homestead. Lauen is also on the autism spectrum. Marin praises her skill and patience with the children, many of whom also have autism or learning disabilities. Although Lauren graduated last year from the private Christian school, she is continuing her studies part-time and training as a teacher’s assistant.

Lauren is “in transition,” which for people with disabilities, means preparing for life beyond primary school. For decades, most autism-specific services have focused primarily on children. Now those children are growing up to join thousands of other adults in a world most are largely unfamiliar with and in a society that is not fully prepared to receive them.

Enter the University of Miami – Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD). The Center provides services for more than 9,000 clients and their families — 40 percent of whom are older than 16, says executive director Michael Alessandri. Unemployment and underemployment is about 90 percent, he says, and housing is not available for most.

In addition to its services for children and families, UM-NSU CARD provides a list of transition and adult programs for people across the autism spectrum, from higher functioning to individuals with greater challenges.

Autism spectrum disorder (ASD) is a neurodevelopmental condition that affects people’s ability to communicate and interact with others, causing impairment in social and occupational skills. ASD is now defined as a single disorder that includes autism and Asperger syndrome (AS), and “spectrum” refers to the broad range of symptoms and severity. According to the U.S. Centers for Disease Control and Prevention, autism affects one in 68 children. The Autism Society estimates that about 3.5 million Americans are on the spectrum.

UM-NSU CARD programs include Project EAARN Employment Boot Camp, workshops that cover personal safety, money management, resume development, job search, interview skills and workplace social skills. Also offered is an entrepreneurship program and monthly social events. Through partnerships with companies and organizations staff helps clients look for jobs. Support groups for parents and caregivers help parents cope and share resources

In 2014, UM-NSU CARD received a $100,000 endowment fund from The Daniel Jordan Fiddle Foundation founded 16 years ago by Linda Walder, whose son Daniel had autism. He died at age 11 from complications related to seizures, she says, but had he lived, he would be in his 20s. The foundation, based in New Jersey, also awarded funding to the Yale Child Study Center at the Yale School of Medicine, to focus on adult autism research, the first of its kind in the country.

“We decided about two years ago that we want to make sure that adults and autism are always discussed and focused upon in the United States, so how do we do that? We pick the best programs, mostly at universities that have expertise in serving adults,” says Walder, who lives in South Carolina.

CARD, says Walder, is like a program laboratory.

“The hope is to create and share models that our organization has developed over the years, along with what is going to be done at the CARD program, and be a resource for organizations around the country.”

Good programs exist, she says, but many people are unaware.

“Many adults and young adults are sitting at home, and their skills are regressing,” Walder says. “They don’t know where to go and where to turn. It’s like they’re just falling off a cliff when school-aged programs are finished.”

Services and programs for adult with disabilities exist locally, including those with Miami-Dade County Schools, says Deborah Chin, a manager at CARD. But there is no centralized service coordination. “Families have to be their own case managers and learn about what is out there and how to optimize the services they may be eligible for.”

CARD helps families navigate the system, she says, and refers them to experts when appropriate.

Adult life at both ends of the spectrum

Writer Jairo Arana, 42, was diagnosed with Aspergers three years ago.

“I was very nervous. I didn’t take too well to it. I was very depressed,” he says. After doing some reading, he took some bold steps.

“I came out on social media… I got a huge awesome response. People were very accepting,” says Arana, who has written for articles for Spanish-language media, self-published short stories and hopes to land a job covering the arts and entertainment fields.

Then with a referral from his therapist, he called Diane Adreon, Ed.D., associate director of UM-NSU CARD, and an expert on Aspergers. He got involved in a range of programs, including Social Cog, a social group.

Arana was chosen for the UM Mailman Center’s Self-Advocate Leadership Training program (SALT), and participated in the 2016 Disability Policy Seminar held April 11-13.

“That’s what I love about CARD,’’ he said. “I don’t have to reach out to them. They reach out to me. I just have to check my email every day.

“They made me aware that I am not alone.’’

Star Gonzalez, Lauren’s mother, says school administrators and teachers have not only provided education and nurturing for Lauren, but flexibility in helping her develop work skills. As a result of frequent seizures, , Lauren has short-term memory loss that affected her ability to retain information. With new medications, she has not had seizures for six years.

Lauren and her family participated in a family support group at UM-NSU CARD, which allowed Lauren to socialize while her mother connected with other parents of children on the spectrum.

“I won’t be here forever,” Gonzalez says. “The more independent I make her, the better it’s going to be for her life.”

Lauren says she would like to be a teacher. “I love to work with them all the time,” she says of the children. “I work hard… I help them with their spelling and reading.”

“With her limitations,” Marin says, “she understands.”

“I’m doing good, Lauren,” another boy says proudly, as he colors in the answers.

Kitty Dumas has a son , Connor Cunningham, who is on the autism spectrum. They are both active members of the autism community and have received services from UM-NSU CARD.

Resources

▪ The Daniel Jordan Fiddle Foundation Transition and Adult Programs at UM-NSU CARD

http://www.umcard.org/adults-asd

http://www.umcard.org/caregiver/

▪  Miami-Dade County Public Schools Transition Services

http://transition.dadeschools.net/services.asp

▪  Miami-Dade County Special Transportation Service (STS)

http://www.miamidade.gov/transit/special-transportation-application.asp.

▪  Information about the ABLE Act for people with disabilities

https://www.realeconomicimpact.org/public-policy/able-act

▪ FIU Project Panther Life

http://education.fiu.edu/pantherlife/

  Comments