Autistic Adults in Rural America: Part I
Autistic adults face numerous challenges, regardless of where they live. Lack of services, lack of jobs, lack of housing and supports for families 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.
As a 2011 LA Times article notes, school spending on autism varies depending on an area’s diagnosis rates. In rural communities—where sparser populations can mean fewer children with autism—school supports are often lacking. This is a major area of concern, as having specialized teaching can make all the difference for students on the spectrum. Angela D. Leonard, Director of the Blue Ridge Autism and Achievement Center in Roanoke, Virginia and the mother of an 18-year-old son with autism, knows something about the lack of appropriate education. When her son, Joshua, was diagnosed, Leonard met another autism mother and they began a support group in an effort to share information and experiences. The two thought they were basically alone as autism families, and that their meetings would be sparsely attended. Yet Leonard remembers that by the third meeting, “Forty-six families showed up. No one was connected.” Realizing how the great the need was, Leonard started an autism program out of her home. Seeing her son start to interact with others was all the motivation she required. When the program grew too large for her home, her church donated a facility. Eleven years later, the Blue Ridge Autism and Achievement Center has multiple locations serving multiple school districts. What began as two parents supporting one another became a large regional service provider.
Leonard notes that area public schools aren’t always equipped to serve autistic children well. “The school districts that have higher numbers of kids have more programs.” And having more programs translates to more opportunities for education, socialization, and just plain getting out of the house. The lack of good programs during the K-12 years may carry forward into adulthood. Through her work at BRAAC, Leonard often hears from parents who have young adult children on the spectrum. Many parents at a loss as to how they can facilitate their children's growth and development post-graduation. Once individuals graduate from high school, Leonard says, “They’re sitting at home, playing video games and hanging out. And their parents know there’s so much more to life for them.”
Many young adults on the spectrum and their families have been burned by difficult educational experiences. However, families in urban areas often have a choice as to where to enroll their children. But in rural areas, where distance is greater and facilities fewer, most families don't have that choice, or the option to switch schools in times of crisis. Sandy Burns recounts her 24-year-old autistic son Eric's school experiences as extremely negative, particularly in the early years. The Burns family has lived in a rural area near Rapid City, South Dakota (city population: 69,200) for 20 years. Despite difficulties with the educational system, Burns says, “I really like living here. Everyone knows everyone, and I can take things to our Senators or Governor if I need to.” Burns works as the CEO of Project Solutions, Inc, and she and her husband are active members of the Autism Society of the Black Hills. The Burns family has struggled to find appropriate educational supports for their son. Burns calls her son’s first nine years of school, before his autism diagnosis “horrible.” Unfortunately, the school system responded to the son’s behavioral challenges by blaming his parents. “They did not have a behavior plan, even though [Eric] hid under his desk and screamed all day,” Burns recalls. In order to facilitate supports for her son, she had to fight the schools on the state level. She banded together with other parents to demand better services, and helped found the Autism Society of the Black Hills chapter as well. The result? Fewer issues with local schools, and an autism program, too. Much has changed since Eric was young. Sandy Burns notes, “We have been able to educate the community, and [Eric] is widely accepted here … [Other towns] struggle due to the lack of knowledge on the part of teachers, and no support systems.” At present, Burns is researching ways for her son to continue his educational journey; he would like to take college-level classes, particularly in history. Eric has motor difficulties that make traditional classroom settings challenging (hand tremors prevent him from being able to write independently). But simply attending a college-level course would be a dream come true. Having to fight the school district for services has solidified the family's commitment to Eric's education.
Sometimes, however, attending school in rural areas can have advantages for autistic adults. Since rural areas may have fewer students on the spectrum, more personal attention and individualized supports can result. And in some sparsely-populated states, a higher percentage of special education services receive funding. For example, Betty Carmon’s autistic son, Steele, was nearly 22 when he graduated from their local school system in Powell, Wyoming (population: 6,393). The family has lived in Powell for 30 years, and for over 20 years, Carmon has served as a staff member for the Wyoming Parent Information Center, an organization that supports families of individuals with disabilities. As such, she has both a parental and professional perspective on the area schools. She reflects on her son’s educational experiences, saying, “In Wyoming, special education in our school districts is funded at 100%. We’re only state that does that.” On the other hand, she notes, their rural location meant a lack of educational options; it was public school or nothing for her son. Steele is not currently enrolled in an educational program; instead, the family is focusing on developing his employment skills and opportunities.
Becky Way, who lives in a rural area 25 miles north of Roanoke, Virginia, has two sons on the spectrum, Blake and Grant, 24. The twins live at home with their parents; the family moved to Virginia from Atlanta in 2004. Born with twin-to-twin transfusion syndrome, both young men have health issues and developmental delays. Advantages of their current location include proximity to the Blue Ridge Parkway and hiking, a family favorite. Disadvantages include fewer cultural opportunities. Way remembers it being easier to find fun outings for her twins to experience when they lived in Atlanta.
The twins were homeschooled, both as Georgia and Virginia residents. Way recounts, “Since (attending school) didn’t work out in Georgia, I assumed it wouldn’t work here. Their [Georgia] school had told us [the twins] could only graduate with a certificate of attendance. I said, ‘So you’re telling me that you’re my babysitting service?’ And they said, ‘Unfortunately, yes.’” (After the Ways moved to Virginia, their former school system was featured in news outlets due to its failure to educate young adults with autism.) Ultimately, however, Becky Way withdrew her sons from school because of a single rule: Teachers had to call an ambulance if a student had a seizure. At the time, Grant was having multiple seizures each week. The family’s insurance didn’t cover an ambulance ride, and the school refused to change the policy. Yet Way saw that her twins’ health issues meant that education mattered even more as they aged. “People think education is ‘over’ at age 18,” she notes “But ... Grant’s seizures are more under control than they’ve ever been. So he’s learning more right now than he did then.” Finding continuing educational supports for adults on the spectrum is a nation-wide issue, and few areas have affordable, accessible post-graduate opportunities for autistic adults. And those limited options tend to be found in proximity to major urban areas.
Where does that leave families like the Ways? Juggling care of their children and their professional careers, and wondering what the future holds. At present, Way works as a teacher, so her husband takes the twins to respite care in the morning, and she picks them up in the afternoon. (The twins do not have jobs at present.) Way empathizes with families who have special needs children, and she works with special education students. (Laughing, she says, “I guess [my supervisors] figured I could handle it!”) In her role, she has encountered many parents who don’t know how to advocate for better services. She says, “I’ve been to IEPs that last 12, 26 minutes. Our IEPs used to be 6 hours. We were like bulldogs. We kept asking questions.” She also notes that, despite difficulties with the school system, living in the Atlanta area meant having access to advocacy supports. For example, thanks to an advocacy group in Georgia, autism parents could have informed volunteers accompany them to IEP meetings. “These [Roanoke-area] parents don’t appear to have that,” Way says.
According to a study prepared by the U.S. Department of Education, one in three young adults with autism have had no paid job experience after high school (and no enrollment in college or technical school, either), as USA Today reported in May 2012.
Julia Triassi, 21, is one adult with Asperger’s syndrome who isn’t sitting at home, despite the fact that she lives in Mansfield, Georgia (population: 413). Triassi is an entrepreneur, university student, and part-time employee as well. Triassi’s family moved to Mansfield from New York in 2007, and the move was a huge transition for her. Despite having been diagnosed with ADHD and anxiety, she was a top student in high school class in New York. She received her diagnosis of AS just before her high school graduation, and recalls struggling in traditional classrooms settings before the diagnosis. She says, “I’d get distracted in classes … and having lots of people talking at once bothers me.” However, Triassi’s exceptional memory helped her to succeed in school. And, she says, she’s always known what she wanted to study. “Other students are often unsure of what they want to do, whereas people with Asperger’s [tend to] have focus. I know what I want to do and I’m good at it.” Triassi’s plans reflect this determination; she’ll attend the University of Tennessee at Chattanooga starting in August 2013. She plans to major in photography and multimedia studies. She’ll also attend a year-long socialization class and work with a tutor through the University’s autism-specific MoSAIC Program. She is nervous about the transition, but looks forward to being a student again. Triassi is moving forward with her education, but in order to do so successfully, she's had to make plans to leave Mansfield.
While Triassi has been able to develop her skills and interests, she has had difficulty finding work that fits her well. Triassi currently works at Ingles (a gas station with a grocery store) where she does inventory, and also has a growing wedding photography business. What does Triassi love most about being a photographer? She says, “I escape into my own world. I see things differently than other people see things, and that means I get cool shots, from a different perspective.” In this way, she says, being on the spectrum has been an advantage. However, she finds that living in a rural area can mean fewer potential clients, and lower-paying gigs as well.
Burns’ son worked for a tourist business last summer, but is currently unemployed. The family is working with Vocational Rehabilitation and a job coach in hopes of finding a year-round position. Eric would prefer not to work as a dishwasher, but those are the only jobs he’s being offered. (Burns is thankful to have a good job herself, one that has allowed her to adjust her hours to coincide with her son’s school hours in the past.) She's helping her son with his job search now, but she says, “There are very few jobs for him to apply to ...”
Likewise, Carmon feels solidarity with other autism parents, saying, says, “We have a hard time finding jobs for our kids.” However, she's committed to having her son in the workforce, be it through paid or volunteer work. And her determination has paid dividends. She laughs, saying, “I’m quite assertive. I can make things happen. Families who don’t know where the resources are … they just let their kids do whatever they want, and they don’t progress.” With these words, Carmon echoes Leonard's description of the “typical” young autistic adult sitting at home playing video games all day. To avoid this fate for her son, Carmon has leveraged the opportunities afforded by her small-town location. She knows that bigger isn’t always better and has found that being in a smaller town can means tighter social networks, which can translate to job opportunities. “Every job my son has gotten is through friends,” she says. Steele excels at jobs that require physical labor, though he struggles with communication skills. “You’ve got to be patient with him,” his mother says, “And in small towns, [people] are more likely to be patient.” Indeed, with the support of job coaches, Steele has stocked shelves, stuffed envelopes at the Chamber of Commerce, opened Happy Meal boxes at McDonald's, and hauled Christmas trees. However, Carmon says, her son’s favorite job was with a landscaping company. He’d clear football fields by hand. “It was the perfect job for him,” she says, “He needs physical labor and minimal interaction, and he lined things up all day!” He's currently an office worker at a local day program.
Urban, suburban, and rural families are all searching to find employment for their young adults on the spectrum. So why does one adult sit at home playing video games while another finds a job? To be sure, an individual's level of functioning is a major factor. As an April 2013 NPR story noted, many autistic adults have tremendous technical prowess, and an ability to focus on tasks they enjoy. But other determining factors can prove significant as well. As the Burns and Carmon families' stories show, the tenacity of parents and caregivers and the personal connection to possible employers are both important. And in some cases, living in a rural area may help facilitate these factors.
Leonard concurs that there is an upside to smaller communities when it comes to employment. She notes that there are opportunities for supported employment in her area, but most are sheltered workshops; she estimates that, “Eighty-five percent are not appropriate for individuals on the spectrum.” Though job opportunities have been scarce, Leonard says that personal connections are key. “If there’s anything that allows for an individual on the spectrum to find a job ... it’s usually because there’s a connection.” This holds true for both urban and rural areas, Leonard notes. However, the sparser populations and closely-knit communities found in many rural areas can translate to a greater likelihood of making those key connections.