Answered by:
Brittany Faith Thacker, EdD, BCBA
Appalachian Valley Autism Center

As a behavior analyst, I often reflect on how to support individuals with autism spectrum disorder (ASD) effectively and their families living in rural communities both here in the United States and abroad. I find myself uncertain about the specific barriers they face and how I can tailor my approach and focus truly on meeting their unique needs.

Care of Individuals With ASD in rural areas

Photographed by Mikhail Nilov (pexels.com)

First and foremost, thank you for your interest in serving underserved communities, as this is a tremendous unmet need. Beyond the complexities of individual diagnoses, families in rural communities often grapple with limited support and scarce resources. Meaningful work in these areas begins with a clear understanding of the challenges they face. In fact, in his 2014 “Promise Zones” speech, President Barack Obama highlights a sobering truth: the strongest statistical predictor of a child’s future success is the zip code into which they are born. This unsettling reality reflects the systemic barriers and resource limitations that disproportionately affect rural populations. To ensure the well-being of current and future members of the ASD community, advocacy and awareness at many levels is essential. Every client deserves respect, and it is the responsibility of leaders in behavior analysis and science-based education and treatment to uphold that standard—delivering care ethically, effectively, and equitably across all regions.

Rural areas all around the globe are home to people who show consistent resilience and adaptability. Locations referred to as “rural” share similar features, including existing outside of urban areas, often faced with hardships related to the local economy, and limited access to healthcare and education. Yet it is often these very limitations that cultivate individuals deeply rooted in their community. People from rural areas are identified as having strong, established moral values, multigenerational community identities, and a connection with the land in which they live (Roka, 2022). While holding many long-standing traditions and a rich heritage, living in a rural area also limits progress in options for care and overall awareness for those impacted by ASD (Antezana et al., 2017). Challenges related to diagnostic availability, diminished access to providers, barriers posed by social stigma, and constraints due to geographic location can all impact access to evidence-based treatment for individuals diagnosed with ASD. Common barriers faced by rural areas worldwide include challenges within travel requirements/restrictions, communication barriers, obtaining resources, and the acceptance of misinformation.

Barriers

Rural areas are often isolated not merely by the sheer distance from more populated and resourced areas, but by an array of geographical constraints, including limited roadway access, poor road conditions in general or as a function of seasonal or transient weather conditions, and limited or otherwise inadequate transportation infrastructure. In some regions of the world where there is civil unrest, travel across distances can be hampered and is, in some cases, unsafe. Any of these can make travel and service delivery especially challenging.

These geographical barriers also contribute to significant communication challenges. In many rural regions around the world, multiple languages are spoken across communities, yet available resources and providers, even when present, may only be accessed in a more predominant language. This mismatch further amplifies the inaccessibility of evidence-based practices, including training and support, which are not consistently available or linguistically appropriate for all families.

“Specialized care is essential for children with [ASD], but adequate access to such care is often limited in rural areas” (Carson et al., 2021, p.129). In fact, a cause of ongoing stress for caregivers of children diagnosed with ASD is limited resources for multiple populations. Among these populations are those at a geographical disadvantage and those impacted by socioeconomic restraints. Van der Paelt et al. (2016) observed that “the majority of children with ASD do not have access to intensive early intervention services” (p. 163). For caregivers who desire to provide quality care for children diagnosed with ASD, limited access to services creates additional barriers. Additional challenges arise when these caregivers are from a rural area and are more likely to be in a lower socioeconomic bracket. Children of families living in rural areas are getting diagnosed at a later age, which limits the window of time in which they can benefit from early intervention treatments and services (Antezana et al., 2017; Barber et al., 2022).

Additionally, misinformation is another barrier to identification and treatment opportunities for individuals diagnosed with ASD residing in rural areas. Trends in research show that those living in rural areas experience a higher frequency of underdiagnosis, late diagnosis, and lack of evidence-based diagnostic measures and interventions. (Gupta et al., 2023). When access to resources and education is limited, combined with feelings of hopelessness from a new diagnosis, any information could lead caregivers and community members down a dangerous path unguided by scientific or evidence-based practices. Misinformation is dangerous and can become commonplace when there is a shortage of high-quality information that is both accurate and current. Finding ways to shed light on and integrate evidence-based practices and treatment options is a way to combat the presence of pseudoscientific options. Educating and supporting those who provide care to individuals diagnosed with ASD on how to evaluate and interpret information (and misinformation) will provide better outcomes overall for everyone involved.

Cultural competency of providers can also have an impact on the effectiveness and social significance of services for children with ASD and their families. Providers may differ significantly from rural consumers in cultural or linguistic background, values, or lived experiences, which can create challenges in communication and understanding. The Behavior Analysis Certification Board (2020) requires cultural competence as a component of the ethical practice criterion. For example, while not making eye contact is a criterion for ASD on many standardized diagnostic assessments, many cultures see eye contact with someone chronologically older as a sign of disrespect. Another example relates to commonly acceptable eating and feeding habits. Utensil use from an early age is the social norm of many Western countries; the same expectation may not be placed or encouraged in other parts of the world. This may impact diagnosis and intake evaluations with ABA and occupational therapy providers within some rural communities and may not always be handled sensitively.

A similar concern is the training and educational options available to professionals working with individuals diagnosed with ASD. This can include members of a medical team and specific training for healthcare staff. With increasing rates of ASD globally, including segments about ASD and supportive treatment options into graduate-level education or requiring continuing education credits for providers working with this population, could have a positive overall benefit to individuals receiving care.

The importance of educating the community to have a better understanding of ASD as a diagnosis as opposed to an illness or moral failing of the parents falls to those who serve this population. Many rural regions have beliefs related to ASD diagnoses that fall into the misgivings of the parent. Oftentimes, cultures even see a diagnosis as a form of religious punishment. Due to this, there is a lack of caregiver support in many rural regions, including within faith communities. This can lead to even further limitation of resources, as well as social isolation and mental health disparities of the caregiver.

How Providers Can Bridge the Gaps:

Clinicians can provide resources for intervention that can be done in the home setting while interested parties are on a waitlist for services. Since waitlists can span years in some rural and developing areas, general guidance can prove invaluable to families. As lack of resources, awareness, and access to treatments are some of the largest barriers for individuals diagnosed with ASD and their families living in rural areas, this can provide educational opportunities and practical strategies. For example, Evoy & Celiberti (2022) reviewed such a resource (e.g. “A review of Promoting Functional Communication within the Home”).

Parent Training

Parent training is a major component of ABA therapy. Listening to families’ lived experiences, as well as autistic individuals themselves, is key to empowering them as partners. Incorporating the goals parents find most valuable becomes a powerful tool to integrate into a possible treatment plan for clients (Sivaraman, 2020). Some ways to assist clients from rural areas would be to consider multiple forms of meetings if the quality of the training can be retained. For example, giving members of the caregiving team the option to be included via telehealth or phone call methods. Some families consider virtual ABA opportunities to help overcome the barriers involved with accessing specialized healthcare in rural areas (Virtual ABA for Rural Families: Bringing Expert Autism Care Home, 2021). Transportation is often a sizable concern in accessing treatment. Providing reasonable options could allow multiple members of the caregiving team to participate as opposed to just one caregiver.

It is important to tailor parent training to the caregivers in the same way ABA therapy is individualized to each client. Members of the client’s caregiving team may come into training sessions with little to no prior knowledge of ABA. Structuring a meeting and having achievable goals for each can help guide the transition into services. These meetings can be held in person at the clinic providing services. Also, sometimes clinics provide options to meet in the home setting to address specific behaviors. Providing as many options as possible while maintaining quality of care is valuable in the ability to meet the needs of the families being served. For example, when possible, include video modeling for training purposes within parent training meetings. Having immediate access to training materials and the opportunity to use and share this resource later can be beneficial to families facing limits and challenges outside of their dedication to their child’s attendance at ABA services.

Materials

To support meaningful work in rural settings, ABA parent training must be paired with accessible, tangible resources. One important goal of parent training within ABA is the generalization of gained skills. Generalization strategies require acquired skills to be practiced across all settings the client is or will be expected to function. Providing physical resources to aid in this process creates additional opportunities for follow-through outside of clinic settings. If possible, create duplicate items when creating materials if the task is expected to be generalized into the home setting. A provider should not assume there is consistent internet access available when the client is in home or school settings in rural locations. Also, just sending links to print materials is unhelpful when families do not have access to a printer or the financial resources to fund printing services. One feasible way to make this more cost-effective would be to create, utilize, and provide laminated copies of materials that can be reused more easily. If reliable internet connection is available, giving a list of known applicable websites that have free materials, as well as any reputable podcasts or videos to aid in the education of behavior response strategies, can be useful.

Coordination of Care

Coordination of care is an integral part of holistic treatment options for individuals diagnosed with ASD. Many ABA clinics incorporate speech, occupational, and physical therapies within their organizational setting. This allows better access to services for the families they serve. Having a system in which the client can receive all recommended outpatient services in one location is a potential way to meet the needs of those who have issues securing transportation.

Another avenue of support would be organizations providing social or family case management services. This can potentially fill a gap in which the ethical bounds of the credentialed behavior analysts providing care for that client are limited. Basic resources (like food and shelter) and stability within the home setting are a necessity for a child to be able to begin the process of learning. Many times, natural setting events can play a role in the potential progress and sustainability of skill acquisition while receiving applied behavior analysis therapy. This puts children who are already at a developmental disadvantage even further behind their peers without risk factors associated with socioeconomic status.

Community Involvement

It is important to have goals for active involvement in local community settings. Since social domain aspects are targeted in ABA therapy, engagement with community organizations not only benefits learning but also creates awareness among community members and may promote acceptance. Behavior analysts can create targeted treatment goals as well as use generalization techniques for mastered skills within the clinic to aid client access to community events.

With growing numbers of ASD diagnoses, collaboration of businesses and organizations within rural communities to better understand those impacted by this diagnosis is essential. Increasing awareness and understanding provide the opportunity for increased advocacy. This would also allow families struggling with perceived social acceptance due to the associated stigmas of ASD to feel more supported within their local community. This can include sensory-friendly events and activities that are lower in volume and have fixed, predictable lighting patterns that are suitable for and can be appreciated by many individuals. For example, having a sensory parade option for scheduled holiday events, as well as sensory-friendly productions at local theaters, could help create a welcoming atmosphere and provide networking opportunities for families impacted by ASD.

Having open-house style community meetings is also an option for garnering support and advocacy for clients. This would allow for public questions with professionals, as well as resources and information delivery for the community. Having the option for better awareness in the community can lead to better equality opportunities for clients and their families. A recent study concluded, “Rights‐orientated empowerment of caregivers and advocacy may make vital contributions to service development for children with [developmental disabilities] in contexts worldwide” (Szlamka et al., 2022, p. 1889).

Creating awareness and training resources for local emergency personnel is also a potential avenue for interagency collaboration within the community. As these are members of the community who will be called and working with the identified population in times of crisis, it is important for them to be educated on procedures that can reduce stress and maximize behavior outcomes in these events. Resources such as those presented on ASAT’s website helps identify considerations for responding to deliver emergent aide to an individual diagnosed with ASD and include safety habits when responding to crisis as the as the first responder (Parenti, 2017).

Charting a Path Forward

All individuals with autism deserve equal opportunities especially when it comes to accessing evidence-based treatment that supports their development, quality of life and well-being. For children diagnosed with autism spectrum disorder (ASD), timely and consistent access to specialized services like Applied Behavior Analysis (ABA) can be life-changing. Yet, in rural communities, systemic barriers as mentioned above such as income inequality, limited transportation, and scarce local resources often stand in the way of equitable care. These barriers are compounded by misconceptions about autism and behavioral interventions, which can further isolate families and delay critical support.

Addressing these issues requires more than awareness—it demands action and the question you posed to us is a step in that direction. I encourage you to consider the fully array of proactive steps to identify these barriers and collaborate with families, schools, and local agencies to create sustainable pathways for supporting individuals with autism. This includes advocating for policy changes, creating community supports, developing culturally responsive training materials, and leveraging modalities that can enhance contact where feasible such as telehealth.

By committing to equity, innovation, and collaboration, we can begin to dismantle the structural obstacles that limit access and ensure that every child, regardless of geography, background, or socioeconomic status, has the opportunity to thrive and benefit from the very best that science has to offer.

References

Antezana, L., Scarpa, A., Valdespino, A., Albright, J., & Richey, J. A. (2017). Rural trends in diagnosis and service for autism spectrum disorder. Frontiers in Psychology, 8(590). https://doi.org/10.3389/fpsyg.2017.00590

Barber, A., Yerby, L., Tomeny, T., Baker, L., Morales-Aleman M. (2022). Brief report: Exploring rural and urban caregiver descriptions of autism symptoms and etiology. International Journal of Disability, Development and Education, 69(4), 1430-1441. https://www.doi.org/10.1080/1034912X.2020.1767763

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts. https://bacb.com/wp-content/ethics-code-for-behavior-analysts/

Carson, T. B., Palacio, A. E., Hextall, S., & Guerrero, L. A. (2021). Therapy needs for children with autism in a rural, underserved island community. Journal of Rural Mental Health, 45(2), 129–140. https://doi.org/10.1037/rmh0000177

Evoy, K., & Celiberti, D. (2022). Review of Promoting functional communication within the home. Science in Autism Treatment, 19(1).

Gupta, M., Gupta, N., & Moll, J. (2023). Duration of untreated autism in rural America: emerging public health crisis. CNS Spectrums, 28(3), 271–274. https://doi.org/10.1017/S1092852922000141

Parenti, K. (2017). Clinical Corner: First responder education in autism. Science in Autism Treatment, 19(7).

Roka, K. (2022). Rural areas. EBSCO; EBSCO Knowledge Advantage. https://www.ebsco.com/research-starters/geography-and-cartography/rural-areas#bibliography

Sivaraman, M. (2020). An interview with Dr. Francesca degli Espinosa Science in Autism Treatment, 17(6).

Slack, M., & Oken, A. (2014, January 10). “A child’s course in life should be determined not by the ZIP code she’s born in.” National Archives and Records Administration. https://obamawhitehouse.archives.gov/blog/2014/01/10/president-obama-child-s-course-life-should-be-determined-not-zip-code-she-s-born

Szlamka, Z., Tekola, B., Hoekstra, R., & Hanlon, C. (2022). The role of advocacy and empowerment in shaping service development for families raising children with developmental disabilities. Health Expectations, 25(4). https://doi.org/10.1111/hex.13539

Van der Paelt, S., Warreyn, P., & Roeyers, H. (2016). Effect of community interventions on social-communicative abilities of preschoolers with autism spectrum disorder. Developmental Neurorehabilitation, 19(3), 162-174. https://doi.org/10.3109/17518423.2014.933983

Virtual ABA for Rural Families: Bringing Expert Autism Care Home. (2021). Fortahealth.com. https://www.fortahealth.com/resources/virtual-aba-for-rural-families-bringing-expert-autism-care-home

Reference for this article:

Thacker, B. F. (2025). Clinical Corner: What are the barriers in rural areas for care of individuals With ASD? Science in Autism Treatment, 22(10).

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