Autistic Adults in Rural America: Part II
Autistic adults face numerous challenges, regardless of where they live. Lack of services, lack of jobs, lack of housing and family supports are universal hurdles to increased quality of life for adults on the spectrum. However, not all communities are created equal. For many families living in rural America, the experience of living with autism is markedly different from that of urbanites—for better and for worse. Quality services can be harder to come by, job opportunities can be limited, and residential options outside of the family home can be virtually non-existent. By the same token, the tight-knit quality of rural communities can often be more socially and emotionally supportive. In this two-part series, AA16 takes a closer look at autism in rural communities as experienced by families in different parts of the country.
Housing & Transportation
Finding appropriate housing for adults on the spectrum is a national challenge, as Angela D. Leonard, Director of the Blue Ridge Autism and Achievement Center in Roanoke, Virginia well knows. Virginia is near the bottom of the national list for Medicaid services and autism services. Few residential opportunities and an abundance of individuals on service waiting lists equal a housing crisis. Leonard notes, “Parents are faced with keeping their adult children at home, in many cases ... a lot of people are on their own.” Leonard’s long-term housing plan for her autistic son, Joshua, involves constructing an apartment-type building on her family’s property. Leonard recognizes that her plan wouldn’t work for every family, saying, “Our circumstances allow us to do something different, and not everybody’s does.”
Leonard also notes that transportation issues often prevent rural families from accessing programs and supports. While urban transportation infrastructure often allows higher-functioning autistic adults to gain a degree of independence, rural residents do not typically have such options. If an autistic adult can ride the bus or subway to their work or day program, they may be able to live semi-independently. But if they live in a rural area and cannot access public transit and are unable to drive, they are much more likely to be homebound.
In the Roanoke area, families work together to use existing transit supports to their advantage. Many area families utilize a disability-based public transit system called RADAR. However, RADAR runs within city limits only. So parents carpool and select meeting places that are right on the outskirts of RADAR’s reach. Leonard also says that living in a rural area renders transportation training for autistic individuals nearly impossible. She describes a Roanoke public school teacher who implemented a successful program for her students on the spectrum that taught them how to use local bus lines. They practiced daily, and gained a new life skill. However, Leonard says, rural students don’t have such opportunities. She sums up the situation: “We’d have to drive into the city to access the bus line to teach them ... so we just don’t.”
Since autistic adults Julia Triassi, Eric Burns, Steele Carmon, and Grant and Blake Way are all living at home, finding autism-appropriate housing is not a current concern. However, all interviewees mention that transportation poses a challenge to acting more independently. Since Triassi (a resident of Mansfield, Georgia population: 413) doesn’t currently drive, she relies on her mother and friends for rides. She has filed paperwork with Georgia’s vocational rehabilitation program, and hopes to start driving lessons.
Likewise, Eric Burns lives at home and does not drive. The Burns family has lived in a rural area near Rapid City, South Dakota (city population: 69,200) for 20 years. Eric’s parents are looking to the future in hopes that Eric can live a more independent life outside their home. Eric’s mother, Sandy Burns says, “We are working with adult services to find an apartment [for Eric], and we are also looking at buying a house that he can share with two other individuals.” However, Rapid City, like Roanoke, has limited public transportation options.
Steele Carmon lives with his parents in a historic home in Powell, Wyoming (population: 6,393) without access to public transportation. While living in a sparsely populated area means travel must be done by car, Steele’s mother, Betty Carmon notes that being a resident of Wyoming affords other advantages for autism families. “Since it’s less populated, people can get on the [Medicaid] Waiver much faster,” she states. “This means training and providers, respite care, job coaching … everything. We’re very fortunate. Kids can get services and training that they need to help make them independent.”
Another challenge of rural life for adults on the spectrum and their families is accessing medical and therapeutic resources. From the start, individuals with autism living in rural areas are at a disadvantage when it comes to health care, as they are often diagnosed later than their urban and suburban counterparts. This delay means fewer early interventions, and an increased potential for skill regression. (To address this problem, a University of Alabama research team has begun developing a video-based diagnostic aid, which they hope will facilitate earlier diagnosis for children with ASD in rural areas.)
But the difficulties go beyond childhood; individuals on the spectrum in rural areas have ongoing issues accessing health care providers. As Leonard observes, “It’s much more difficult to find providers in our [rural] area.” She cites examples of people who drive over an hour to access health care covered by their insurance.
Triassi has experienced the difficulty Leonard describes in accessing providers; she sees several doctors, most at a significant distance. Her psychiatrist is a 45-minute drive away, her neurologist, an hour. Triassi has utilized the Atlanta public transit system in the past, but Mansfield is at a significant distance from bus routes. She says that it’s difficult to manage appointments with far-flung doctors, and expresses a desire to attend support groups for people with Asperger’s in Atlanta. “I’d like to go,” she says, “But I can’t get there.” In turn, Burns says that it was difficult to find good doctors for her son in his early years. She recalls, “One doctor refused to see us because I didn't want [Eric] to get immunizations.” Furthermore, Eric’s medical needs have meant several hospitalizations. “He has had numerous surgeries and some complications because he doesn't seem to feel pain,” she explains. However, she notes that they don’t have to travel extended distances for her son’s medical appointments at this time, and that they’re now able to access providers.
Likewise, Carmon remembers trying to find a pediatrician who would listen to her concerns about her son. She says, “I knew that something was wrong … I’d take [Steele] to the doctor, and they’d say, ‘Leave him alone.’ He wasn’t meeting milestones, and there was a lack of good medical help for us.” Carmon’s community took her concerns seriously, raising money to send her to autism conferences and neurologists from Helena. She says, “There were good doctors [for Steele], but we had to go a long way to get to them.” The school system has lent support as well. Carmon recalls, “Since no one [in our town] knew what to do with [autism], the school system paid for us to go to Denver for an evaluation. It was around the time of IDEA ‘97. They sent Steele’s teachers to Denver to learn about autism.”
Life in a rural area can bring a sense of isolation for autism families. However, sparsely populated places can also give rise to close-knit communities and an atmosphere of acceptance. Leonard observes that parents and siblings make tremendous contributions and creating opportunities for their loved ones where none have existed before.
For many autistic adults in rural areas, religious communities are a primary place of connection. Triassi’s social connections in Mansfield come from her church. She attends religious services every Sunday, and has been a member of a weekly support group for over three years. She also volunteers at her church by working the light board. Though Triassi does struggle with aspects of life in Mansfield, she is committed to serving her community. She recounts, “When I was diagnosed [with Asperger’s], I didn’t really like it, but now I use [my diagnosis] to help people.” Triassi volunteers with the A.skate Foundation, a nonprofit that invites young people with autism to socialize and engage with the world through skateboarding.
Like Leonard, Burns notes that an absence of autism resources has translated to greater collaborative effort. For example, there were no after-school autism programs in their area, so the Burns family and other members of the Autism Society of the Black Hills developed them. At present, Eric’s social connections come from a “Buddy Program” with the local college and the gaming community. Sandy Burns recalls, “The kids in the neighborhood would all come over to our house because we always bought [Eric] the latest video game. He loved it.” Unlike Triassi, the Burns family does not attend a church. Burns recalls an early negative experience, saying, “We tried [to attend church] when [our son] was young, but they asked us that he not attend the regular service, and they would not take him in the daycare ... so we never went back.”
Becky Way—who lives in a rural area 25 miles north of Roanoke, Virginia—says that her family has been invited to events at their church, and that these invitations are the only ones they receive from their community. Since the move to rural Virginia, she believes that more people have reached out to her family, but the absence of a peer group for the twins makes attending church events more challenging. Way notes that her sons would have had a better shot at a peer group in a bigger city, or within a larger church and educating her community has been a long process. She remembers sensing fear and distance when her sons first started attending their local respite care center, but years later, they have formed relationships. Yet at the same time, their neighborhood hasn't warmed up. “Our neighbors have said two words; we've lived in our subdivision for nine years,” she notes.
Carmon cites school as Steele’s primary source of socialization, as well as the local Boys and Girls Club and Special Olympics chapter. She believes that her son has been able to make connections in part because of a decision she made: “Every year, [the school] would have us sign a confidentiality agreement, and I made my own clause that allowed anybody to talk about [his autism diagnosis].” Her strategy seems to have worked. “Once, I overheard two students. One said, ‘That kid [Steele] is the weirdest,’ and the other said, ‘Don’t you talk about him like that. He’s the Rainman.’” And when Steele was hit by a car as a pedestrian, breaking his collarbone and injuring his leg, Carmon remembers a flood of students coming to visit him in the hospital. They brought Oreo cookies and Pepsi … her son's favorite foods.
The challenges and joys that autistic adults and their families encounter as a result of living in rural areas are not so very different from those faced by their urban and suburban counterparts. Across the nation, autism families struggle to access support services, secure jobs, and help their young adults forge connections. But being an autistic adult in a rural area can mean that these universal challenges and joys are magnified. If accessing housing, transportation, and care providers is already difficult, living in a rural location makes it even more so. If the educational system hasn't caught up to the wave of young adults with autism in schools, rural life makes that gap even more evident. However, if it's personal connections that help most young adults with autism find jobs, rural communities can often provide those in ways large cities cannot. And if autism parents and family members are gaining influence in grassroots organizations, living in a rural area means that the groups' impact may be more keenly felt.
In a world where autism families have to fight for services and supports, life in a rural area can make the struggle ever more strenuous. Yet families in rural America are no strangers to hard work. Way speaks for many autism families when she says, “If we need it, we’ll look for it. We don’t really let location be a barrier. We do what we have to do.”