Spectrum of support

A participant crosses the finish line at the Autism Society of NC’s Run/Walk for Autism event. Camilla Calnan

It’s the end of the school day, and kids are gathering their things, getting ready to go home. An autistic child, however, might miss the cue that it’s time to pack up, notes Sylvia van Meerten of the Asheville-based Empower Autism. And that, she says, could lead to their being scolded, triggering stress that makes the situation worse.

Because their brains are physically different, people with autism can’t read facial expressions and tone of voice the way most of us do, van Meerten explains. This, she says, can create real difficulties in navigating the world at large.

“They’re missing all these levels of communication,” she says, “so what we do to [them] can be kind of mean.”

In Asheville, however, van Meerten and others are working hard to keep such situations to a minimum and ensure that adults and children with autism have the resources they need to thrive in our community.

Empower Autism

Empower Autism, a private business, provides one-on-one coaching and mentoring for individuals with autism who are facing a major life transition, such as a move or career change. After an initial phone consultation, van Meerten decides whether she’d be a good fit to work with the people needing services. If the answer is yes, she’ll meet with them in the environment they’re seeking help with (such as a college dorm room for a freshman student) and develop a goal-based approach to ensuring success.

“Then I write up a detailed plan for how to meet two or three of those goals in bite-size chunks,” she explains, “and we write a timeline in order to put the plan in place and decide what things you need to purchase (like a whiteboard or calendar), or what steps you need to do and in what order.”

Besides assisting local families, van Meerten helps develop summer camp programs for kids on the autism spectrum. She’s designed one for the Pennsylvania-based Dragonfly Forest, and every summer, she heads up to Michigan to co-direct Camp Tall Tree.

“The biggest thing I have to address is the anxiety about what can happen and what's expected,” she says. “People with autism are very functional when they know what to expect and what you expect of them. Plus, for some of them, their verbal processing centers in their brain are physically smaller, but their visual processing centers are larger. That means if I can convey the expectations visually in the form of a list or schedule or picture, then it’s a lot easier for them to understand what we expect. So we have a lot of extra staff if someone needs to bail on an activity, and we have a lot of visual structure, so people can look around and see what’s expected without having to hear it.”

Autism Consulting & Training

Another local private-pay provider, Autism Consulting & Training Inc., coaches, assists and supports children with autism and their families. Owner Jennifer Lingle says it was her experience teaching children with autism in Miami, where teachers aren’t allowed to coach their own students outside the classroom, that inspired her to launch her business. “I started working with other students in their homes,” she explains, “and I found out just how satisfying that was and how grateful families were.”

Lingle, too, begins by setting up an initial consultation with the family. She visits prospective clients in their home to evaluate where each child is in terms of academic, social and communication skills, and to gauge any behavioral or sensory challenges. “From there,” she continues, “I create a report focusing on our goals and objectives, and I set up hourlong sessions, typically two to three times per week, where I go to the home and work on all those things, using a variety of teaching methods.”

One major benefit of working in-home, notes Lingle, is that it helps clients with generalization: their ability to perform a particular skill in different environments. “I could teach a typically developing child how to wash his hands at home, and he’d know how to do that at a restaurant or school,” she explains. “But a child with autism may act like they’ve never seen the sink at a restaurant before if they learned how to wash their hands at school. So that is one of the reasons why it’s so important to work on skills in the home with my students, because they are there so often and may not be generalizing what they learn at school or at the therapist’s office.”

Besides her work with children in Western North Carolina and nationwide, Lingle is also the founder and president of the International Autism Association for Families and Educators. “I realized how disgruntled parents were with the school system and how unappreciated teachers felt,” she says, “so I created this association to help bridge that gap. It’s bringing resources from all over the world to families’ and teachers’ fingertips, and allowing the two groups to support each other in a different kind of way.” Each month, the organization features an article on a different theme, written by an autism professional. The group also offers Q-and-A calls and an online forum where people can seek answers.

Public services

Private pay services cost anywhere from $25 to $100 per hour, and many families say the benefits more than justify the cost.

But for those who can’t afford those rates, there are also public resources, though budget cuts have made it harder for these organizations to keep pace with the growing numbers of people needing their services.

“There were cuts to some of the state grants that directly impact our advocacy and education programs,” notes Joe Yurchak, western regional services director for the Autism Society of North Carolina. “We are still able to provide free service to people, but the reduction doesn't allow us to reach enough people. Still, anybody who's able to call up the Autism Society has free access to a resource specialist that can assist them in navigating the mental health world.”

Free services are subsidized by Medicaid and state funding; the group also provides private-pay services. To determine which services families are is entitled to, Yurchak says they must contact the Smoky Mountain Center, a managed care organization that serves as a hub for allocating resources. Some services, such as parent training, are always free; for others, the cost depends on the family’s financial situation.

The society offers both direct assistance (such as in-home care, respite care and supported-living homes) and training for people who work in the autism community. First responders, for example, learn how to deal with emergencies involving someone with autism. The group also administers the Sarah Handlan Crisis Fund, which helps Asheville families dealing with autism who find themselves in difficult situations. The money, says Yurchak, has been used to cover everything from paying an overdue electric bill to treating a home for pests. Blue Ridge Bags, another Autism Society program, is a small business that trains and employs people on the autism spectrum to manufacture and sell various items featuring artwork by people with autism.

One of the group’s latest projects is advocating for insurance coverage for autism services, something most policies don’t currently provide. The Autism Society is supporting House Bill 498, which would make such coverage mandatory in North Carolina. It’s already passed the N.C. House and is now in the Senate awaiting a committee hearing.

TEACCH Autism Program

Originally an autonomous, state-funded program, TEACCH Autism is now under the UNC School of Medicine. The goal, notes clinical director Michele Villalobos, is “to create and cultivate the development of community-based … training programs and research, all with the aim of enhancing the quality of life for individuals with autism and their families.” The program’s services are available to people of all ages.

Unable to keep up with rising numbers of people needing help, Villalobos explains, TEACCH is shifting its focus from providing direct care to training “providers in the community — anyone from the disability coordinator at the local college to elementary or preschool teachers or early intervention specialists — to work with individuals with autism using our principles.”

Those principles are grounded in the group’s “Culture of Autism” approach, which maintains that people with autism spectrum disorder are generally better visual learners; have a good grasp of details but difficulty assembling them; have a hard time combining and organizing ideas, materials and activities; and have communication problems.

Despite the focus on training, adults and children with autism can still receive help through the TEACCH program. Any family, notes Villalobos, can come in for a free consultation to discuss treatment and support options without having to go through the Smoky Mountain Center. There are also diagnostic evaluations, parent training and support groups, social play and recreation groups, individual counseling for higher-functioning clients and supported employment. Some of these services are free; others, such as the evaluations, are covered by Medicare and Medicaid. “I believe we are the only provider in the Asheville area and WNC region that does autism diagnostic evaluations, and that is covered by most insurance,” Villalobos reports.

Meanwhile, TEACCH has just received a portion of a larger federal grant awarded to UNC-Chapel Hill to fund “a three-year project … linking both university and state partners to lower the age at which kids can get developmental screening,” says Villalobos. Only four states were admitted into the program; North Carolina, Villalobos notes, “has a strong history of serving individuals with autism spectrum disorder. … When we first started talking about autism 60 years ago, the folks that started TEACCH were some of the key players. It was North Carolina and California. So I think, as a state, we set that precedent.”

And despite the challenges posed by dwindling federal and state funds, this community is fortunate in the range of services available for people with autism. In part, that’s because the various service providers are working more in partnership to educate families about what’s available.

“When I moved here,” remembers Lingle, “it was really challenging for me to find out all the organizations that were out there — even though we have the Internet, and even though we’re a very small town. So I think that we've all recognized that and are all working and trying to support each other to get the word out about our organizations.”

— Asheville freelance writer Michael Franco can be reached at writermikef@gmail.com.