Understanding Oral Care Challenges in Children with Autism Spectrum Disorder: A Mixed Methods Study

Background: It is well established that oral care is an important component of pediatric healthcare. However, children with autism spectrum disorder (ASD) and other developmental disabilities are at risk for poorer oral health and quality care.

Objectives: It is essential to identify and understand the barriers to quality oral care experienced by children with ASD and their caregivers. This mixed methods sequential explanatory study, the first on this topic to incorporate qualitative methods, will enable us to better understand how families of children with ASD experience oral care in the dental office.

Methods: Focusing on caregivers of children 5-10 years with ASD (n=106), quantitative methods using a 37-item survey were used to identify the types and degree of oral care challenges that affect children with ASD. Survey data were analyzed descriptively. Surveys were followed by qualitative methods to provide a more in-depth understanding of challenges. Two focus groups of parents of children with ASD 5-10 years lasting 2.5-3 hrs in duration each were conducted (n=9 participants total). Qualitative data were analyzed using a template coding approach based on the three domains of office-based oral care challenges covered in the survey.

Results: In the quantitative phase, parent respondents reported difficulties with access to care (37%) and that dentists had inadequate training to work with children with special healthcare needs (58%). Over 50% of parents reported that sensory sensitivities increased in the dental environment and made dental appointments challenging. They also reported that their child’s uncooperative behaviors increased at the dental office (53%) and made it difficult for dentists to clean their child’s teeth (64%) and that these behaviors led to the use of pharmacological methods (e.g., general anesthesia) to perform routine dental care (77% of those whose children had required drug interventions to perform routine care).

In the qualitative follow-up several related themes emerged. The first theme, Difficult to Find the Right Dentist, emphasized access challenges and included subthemes regarding dentist’s refusals to treat their child, dentist misrepresentation to caregivers (e.g., dentist stating that they have experience/are comfortable working with children with ASD), difficulties with obtaining referrals to find an appropriate dentist, and the excessive cost of treatment. The second theme, All the Sensory Devices Just Make Him So Uncomfortable, focused on difficulties related to sensory sensitivities from stimuli of all modalities encountered during care. The third theme, It Looked Like They Were Torturing Him, delved into the use of restraint by a parent and/or dental professional during routine oral care and the complex perceptions of this practice. The last theme was Drugs: A Mixed Bag, which explored differing perspectives on the use of pharmacological methods such as nitrous oxide and general anesthesia to enable routine oral care.

Conclusions: These findings provide greater insight into the challenges experienced by children with ASD and their parents. This information has the potential to improve patient-centered care for this population by helping professionals identify priorities for efforts to address the oral health-related needs of this population.