On the frontlines of autism advocacy and action

On the frontlines of autism advocacy and action

By Pamela Edward

On the frontlines of autism advocacy and action

By Pamela Edward
The Center for Autism and Related Disabilities (UM-NSU CARD) is one of seven university-based, state-funded outreach and support centers in Florida dedicated to optimizing the human potential of people with autism spectrum disorder—and its client base is growing rapidly.

When Marie-Ilene Whitehurst ’74 and Tom Whitehurst’s son, Thomas, was about 15 months old, they realized his development was slow enough to warrant a visit to a pediatric neurologist. Seven months later came the definitive—and for the Whitehursts, shocking—diagnosis: Thomas had autism.

Thomas is now 29 and although he has great difficulty speaking and is unable to do many of the everyday things that neurotypical adults take for granted, his story is one of optimism and purpose in the face of tremendous challenges. His diagnosis sent the Whitehursts, who reside in Coral Gables, Fla., on a lifelong journey of advocacy for their son and for others with intellectual and developmental disabilities. Their first port of call was the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD).

“When we got the diagnosis, the first place I called was CARD,” Marie-Ilene said.  “A friend told me that UM had a center for autism on campus and that it was relatively new, but that I should call them. So, I did, and I met Dr. Diane Adreon, who is the associate director. They had so much information and supported us in terms of referrals, [for example] the speech and language program that Thomas went to for two years. We’d never have heard of them without CARD. There wasn’t really a lot of information locally or even nationally back then—it was a very splintered community.”

UM-NSU CARD is one of seven university-based, state-funded outreach and support centers in Florida dedicated to optimizing the human potential of people with autism spectrum disorders (ASD) and related disabling conditions. The Center currently serves 13,500 clients in Miami-Dade, Broward, and Monroe Counties, providing programs, resources, and referrals designed to help these individuals live and work as independently as possible. It also works to promote autism awareness and acceptance and develop programs that go beyond what is mandated by the state.

Since that initial contact 27 years ago, the Whitehursts have maintained close contact with UM-NSU CARD. “[Over] all these years, they’ve been there to offer programs like summer programs,” Marie-Ilene said. “Thomas attended camp; he attended the surf camp. He was a volunteer for several years as an adult. Now he has a job one day a week in the offices there. He is the official shredder—he goes around all the offices to get all the documents that need to be shredded. He really loves that job and…soon he’ll be able to go back to work [after COVID necessitated closure of CARD’s offices].  They just have all these tools available to you. You know, in good times and bad times they’re always there.”

In addition to providing services and resources to individuals and families, UM-NSU CARD provides local school systems, educators, and related service providers with extensive training, classroom support, and programmatic technical assistance so that they can better meet the needs of students with autism and other intellectual and developmental disabilities. Michael Alessandri, executive director of UM-NSU CARD and professor of clinical psychology at the University of Miami, was instrumental in implementing improved programming and protocols for the autism program at the school where Thomas attended kindergarten.

UM-NSU-CARD has six staff members with ASD on its staff, including Thomas, and for Alessandri, their being part of his team has been transformational. “It’s one thing to do the work and have an intellectual understanding of the disorder,” he said. “But when you're actually embedded in a workplace with the people that you are serving, it changes your understanding of autism, it gives you a richer, deeper and more profound respect for the work. Representation comes in many forms and neurodiversity is real—and we’re just trying to live it.”

At the heart of the autism community are families like the Whitehursts, and parents like Marie-Ilene and Tom.  As Alessandri said, “the parents that I work with are absolutely phenomenal. They're absolutely relentless, they will turn over every stone to find the best path forward for their kids.”

For Alessandri and UM-NSU CARD, one major priority is reaching parents and children in underserved Black and Latino communities. “One of the things we have learned is that Black kids, for example, are diagnosed so late relative to white kids, and even Hispanic kids in Florida, that they're missing out on so much high-quality intervention,” he said.  “And even when they are diagnosed, which is like a year and a half to two years later than a white child, they're diagnosed often with the wrong condition.”

“So, we're really trying now through some of our initiatives—we have some diversity, equity, and inclusion initiatives and an autism multicultural collective—to [work] with community partners at the grassroots level, to try to get information and care to those who are less likely to be connected to the services that are available. We’re trying to [find] the kids who need us the most, and the families who need us the most in the communities who need us the most and get the least.”

For its clients, UM-NSU CARD delivers services free of charge, making the Center highly dependent on philanthropic support to augment its state funding. “The costs involved, the challenges we all face in delivering high quality services, require a whole community to be engaged and to contribute,” Alessandri said. “I hope people who aren’t [personally] affected by autism understand the power that they have to make a difference in the lives of the people who are affected.”

UM-NSU CARD’s client base has grown 50% to 60% in the past few years, according to Alessandri, and they are increasingly challenged to reach every family in need of their services. Donor support will enable UM-NSU CARD to reach these families and more. Click here to make a gift.

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