At first, The Emch Foundation got involved through Cure Autism Now/Autism Speaks and funded individual clinical research projects specified in their grant awards. They soon realized, however, that their foundation could also fill an unmet need. “We found that there were plenty of people focused on autism in children, and there was a perception in the media that autism was a childhood condition,” Emch explains. “There was virtually no realization that autistic kids grow up to become autistic adults. And although there certainly should be clinical research on autistic kids, there wasn’t enough focus on autism’s impact on adults. So we shifted our philanthropy toward what’s happening with this population as it ages, leaves high school, and transitions to their 20s and 30s.”
According to Emch, although autistic children are accommodated by special education programs and services while they’re in school, they “fall off a cliff” when they turn 18. “Children coming out of these programs are less likely to continue in the education system and are underemployed compared to other special education kids,” Emch explains. “By law, public school systems have to provide services while the kids are enrolled, but once they graduate from high school that entitlement ends. Even if they’re eligible for programs that might help, there are usually extensive waiting lists.” The transition from school to independent living is often too daunting. “They tend to have a hard time taking the next step,” says Emch. “Attending a community college might be too tough, and most have difficulty getting and staying employed. Many of them end up back at home, playing video games while their parents are off at work, struggling to figure out who can stay at home with their child.” With 50,000 children with autistic spectrum disorder turning 18 each year—some of them with profound disabilities—the impact on families and communities alike can be devastating.
Emch and Pavlides feel lucky that their own son has cleared these hurdles. “Our son is off at college, living on his own,” Emch reports. “We’re proud of him. He’s been able to be included in the community. But we have friends who haven’t experienced any of this. Some of them are having a really rough time.” To help other families coping with autism, the couple have established a website, www.autismafter16.com that serves as a clearinghouse for information on autism research, service providers, housing, employment, finance, and other issues of concern for autistic adults and their families. In addition, the foundation also funds organizations such as the Southwest Autism Research & Resource Center (SARRC). “We spend a lot of time looking at models of service provision and employment,” says Pavlides. “I’m impressed with the work at SARRC. The organization was started in Phoenix by parents and clinicians and they pushed into adult services long before other people did. We tend to look for organizations like SARRC that are doing work that can be replicated elsewhere. With one in 88 individuals diagnosed as autistic, it’s not enough to have one model program—we need programs that can be duplicated in communities across the U.S.”
Pavlides, a special educator by training, is the author of Animal-Assisted Interventions for Individuals with Autism (Jessica Kingsley Publishers, 2008), a book with a forward by Temple Grandin. So perhaps it’s not surprising that she and her husband are particularly interested in both animal therapy and animal welfare. “I put my son into a therapeutic horseback riding program and noticed tremendous benefits. From there, my interest evolved from a piecemeal approach to the bigger picture of autism and animals,” Pavlides explains. “Animals aid cognitive development but more importantly, they help autistic individuals develop social skills. They practice social interactions with animals and learn sensory integration. Perhaps even more importantly, pets provide autistic individuals with social capital. Like guys taking dogs to a dog park to function as chick magnets, having a pet facilitates social interaction for some autistic individuals.”
The Emch Foundation has supported both service dog agencies and animal shelters. “We fund Saint Francis Service Dogs here in Virginia,” says Emch. “It’s an organization that trains service dogs and makes them available for people with a variety of disabilities, including autism. Dogs can help autistic individuals with elopement—kids and young adults who bolt from family homes or bolt when on walks, sometimes into traffic. People with autism also frequently suffer from other disorders, such as seizures, and some service dogs can sense these coming on. More generally, the dogs can be emotionally calming for the individuals they serve, enabling them to be successful in otherwise stressful environments.”
The foundation has also granted to the SPCA of Martinsville, Virginia. “Rural animal sheltering is challenging because most work on a shoestring budget in areas where spaying and neutering is the exception rather than the rule. Consequently, they usually have far more animals in the shelter than could be adopted successfully in the local community. Some of the best ones develop creative spay and neuter programs as well as work with urban rescue groups, moving animals to areas where people may be waiting to adopt shelter dogs and cats. The best public/ private efforts, where 501(c)(3) groups work with, rather than against, their local county-run ‘dog pound,’ have drastically lowered euthanasia rates in rural counties.”
With so much work going into their philanthropy, Emch says he turned to Foundation Source in order to maintain his focus: “I don’t know foundation law, and I have no interested in paperwork,” he says. “That’s why we turned to Foundation Source. Foundation Source gives me the peace of mind that someone is doing my tax return and other paperwork, not letting me run afoul of any of the laws, all of which allows me to think more about my philanthropy.” That steady attention to the issues has paid off in significant impact. “We have helped families through the website and through the foundation,” Emch observes. “We see some progress being made on the clinical side, and we understand autism better than we did in 2007.”
Of course, much work is still required. “We want to advance the dialogue about autism—not only its causes but also best practices,” says Pavlides. And it’s the best practices component that is especially lagging. “The field has evolved to acknowledging that we don’t really have a handle on best practices for adults.” As The Emch Foundation continues its mission, that day may soon come.
