Overcoming Barriers to Accessing Autism Services in Rural America

The benefits of early diagnosis and subsequent intervention for Autism Spectrum Disorder (ASD) are undeniable. Research strongly supports that identifying and treating ASD early can positively impact children’s development and help them reach their full lifelong potential.

Fortunately, there has been increasing awareness in the healthcare community of the inequities in access to timely ASD services, particularly for families with girls and children of color. However, the unique challenges that families in rural communities face are less frequently highlighted.

Here’s a glimpse:

‍Children in rural areas are diagnosed for ASD later than their urban counterparts. 

  •  For families across the country, the current path to diagnosis is complicated, expensive, and slow, resulting in an average diagnosis age of over four years, despite ASD being reliably diagnosable by age two.¹ Studies show that children in rural areas are diagnosed even later than those in urban areas.²

Greater geographical distance from all healthcare providers and specialists in ASD can make it harder for parents to access care for ASD, especially behavioral treatments.

  • A CDC survey found that 35% of parents of ASD kids in rural areas reported significant difficulties and delays due to lack of available services (versus 23% of urban parents).3
  • According to one study, the most commonly recommended but not implemented Autism services for rural parents were behavior support services and parent support groups, both of which they had to take more time to travel to compared to non-rural parents. Parents also perceived behavioral support services for children with ASD to be less effective than did their urban counterparts.4
  • Another study also found that compared to urban parents, rural parents were more likely to prioritize behavior therapy as a need, with 30% ranking it as their highest priority out of seven other services.5

Rural parents are likely to look to school systems as the main source of support for autism awareness and intervention.

  • The CDC survey found that 40% of rural parents said their doctor suggests bringing up their ASD concerns in their schools, versus 28% of urban parents.3‍
  • However, many rural schools struggle to effectively support students with autism. One study found three common themes of difficulties: teacher’s need for more professional development and education on ASD, limited parental knowledge on ASD, and the low socioeconomic status and poverty of their rural community.6

‍Telehealth can provide urgently needed access to quality ASD services in rural areas.

  • Both in practice and in research, telehealth diagnostic evaluations7 (such as we provide at Jigsaw Diagnostics) as well as telehealth interventions are starting to emerge as valuable, transformative solutions.

At Jigsaw, we firmly believe all families deserve the highest quality diagnostic and supportive services for childhood neurobehavioral conditions. More research is needed to understand the unique challenges rural families face, but one thing is for certain: there is an urgent demand for easier, more affordable access in rural settings, which we are answering via our innovative telehealth autism diagnosis process.

Learn more about our telehealth autism diagnosis process and schedule a free consultation call here.

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References 

  1. National Survey of Children’s Health (NSCH) (2016-2019)
  2. Mandell DS, Novak MM, Zubritsky CD. Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics. 2005;116(6):1480-1486. doi:10.1542/peds.2005-0185
  3. Centers for Disease Control and Prevention National Center for Health Statistics State and Local Area Integrated Telephone Survey (2011). Survey of Pathways to Diagnosis and Services Frequently Asked Questions. Available at: http://www.cdc.gov/nchs/slaits/spds.htm [accessed June 2024]].
  4. Mello, Maria P., Samantha E. Goldman, Richard C. Urbano, and Robert M. Hodapp. "Services for children with autism spectrum disorder: Comparing rural and non-rural communities." Education and Training in Autism and Developmental Disabilities (2016): 355-365.
  5. Murphy, Melissa A., and Lisa A. Ruble. "A comparative study of rurality and urbanicity on access to and satisfaction with services for children with autism spectrum disorders." Rural Special Education Quarterly 31, no. 3 (2012): 3-11.
  6. Azano, Amy Price, and Mary Elizabeth Tackett. "Perceptions of teachers and parents on the educational experiences of students with autism in a remote rural community." The Rural Educator 38, no. 3 (2018): 39-54.
  7. Stavropoulos, Katherine Kuhl-Meltzoff, Yasamin Bolourian, and Jan Blacher. "A scoping review of telehealth diagnosis of autism spectrum disorder." PloS one 17, no. 2 (2022): e0263062

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