Caring for Children with ASD in Primary Care: Perceived Barriers and Needs for Support

Background: Access to comprehensive, coordinated, and evidence-based healthcare is critical for children with autism spectrum disorder (ASD), particularly given their complex healthcare needs and co-occurring medical and psychiatric conditions. However, children with ASD experience greater unmet healthcare needs, higher healthcare costs, and worse access to specialty care than children with other special healthcare needs. Children with ASD from underserved populations face even greater difficulties accessing specialty care. Primary care providers (PCPs) are ideally positioned to address these disparities by offering consistent, timely, and culturally-responsive care for children in their own communities. However, many PCPs have difficulty providing evidence-based screening and management of children with ASD. A better understanding of perceived barriers and needs for support among PCPs would directly inform future efforts to enhance care for children with ASD within the primary care setting.

Objectives: To examine the perceived barriers and needs for support in providing care for children with ASD among a large geographically diverse sample of PCPs.

Methods: Data were examined from a multi-site study of a new PCP training program focused on caring for children with ASD. The sample included 114 PCPs caring for underserved children in 14 US states, including general pediatricians (n=82), internal medicine-pediatrics physicians (n=6), family medicine physicians (n=7), nurse practitioners (n=15), physician assistants (n=2), and other PCPs (n=2). At the baseline assessment (prior to participating in the 6-month training program), PCPs were asked to indicate the specific barriers they faced in caring for children with ASD in their practices (from a list of 10, which included an open-ended “other” option), and also responded to an open-ended text response question: “What do you need to improve care for children with autism in your practice?” Descriptive statistics were conducted to characterize the frequency with which specific barriers were endorsed. Qualitative methods were used to code and analyze the themes reported in open-ended responses.

Results: The most commonly endorsed barriers included lack of time (84%), lack of confidence in managing behavioral issues in children with autism (84%), and lack of knowledge about autism resources (80%). Many PCPs also endorsed lack of access to autism specialists (64%), lack of prior training in autism (57%), lack of confidence managing medical problems in children with autism (50%), and lack of knowledge about autism symptoms (30%). Fewer PCPs reported lack of support from administration (17%) or inadequate reimbursement (28%) as barriers. Qualitative analyses of perceived needs for support revealed six themes, the most common being need for additional resources (expressed by 48% of PCPs), desire for more knowledge and confidence (52%), and a need for greater access to diagnostic and behavioral specialists (25%).

Conclusions: PCPs commonly endorsed multiple barriers to caring for children with ASD. Many of the most commonly reported barriers related to needs for additional knowledge and training in how to manage and support children with ASD, suggesting a need for specific PCP training programs. Additional barriers suggest a need for enhancing the broader health system, including allowing for lengthier visits and improved reimbursement.