Amy Campbell, PhD(c), RN, CPNP-PC, is a third-year PhD candidate at Vanderbilt University School of Nursing. During her years working as a pediatric nurse practitioner in primary care, she observed many mothers struggling with feeding their infants. Some of these infants went on to be diagnosed with Autism Spectrum Disorder, which lead her to inquiring if we can identify symptoms of ASD by examining feeding behaviors in the first 12 months of life. “I also thought to myself about how pediatric primary care providers can improve on identifying if an infant is struggling with feeding even if their growth is normal,” says Campbell. These questions stemming from her clinical experiences led her on a journey in pursuing her PhD in Nursing Science at VUSN.
Campbell’s research focuses on feeding difficulties in infants later diagnosed with ASD. Her dissertation study entails interviewing mothers who have a child with ASD, and focuses on their challenges feeding that child as an infant as compared to their neurotypical sibling. The interview questions include queries regarding all methods of infant oral feeding—breastfeeding, bottle feeding and solid food feeding. The study also inquires about the mothers’ experiences in working with their pediatric primary care providers when they encountered these infant feeding difficulties. Campbell’s aim with her dissertation study is threefold: to identify what feeding difficulties these infants later diagnosed with ASD had during the first year of life, the reasons why mothers stopped breastfeeding their infants with ASD, and how primary care providers responded to and supported these mothers when they were experiencing these feeding difficulties with their infants.
So why is this study important? According to the CDC and AustismSpeaks, ASD affects 1 in 44 children in the United States and is the fastest growing developmental disorder. Most children can be reliably diagnosed around the age of 24 months but in the U.S., the average age for diagnosis is around 50 months. Children diagnosed before the age of 36 months have been shown to have improved school and life outcomes with developmental intervention therapies—but an ASD diagnosis is needed for children to qualify to receive these therapies. [i][ii] Campbell explains “clinicians in the pediatric primary care setting are at the forefront of identifying developmental abnormalities and feeding difficulties in infants but many times these difficulties are not identified because an infant’s growth is typically normal in this population. Additionally, parents may lack the knowledge of what typical feeding behaviors are for infants, especially if is their first child.” She goes on to state that providing pediatric primary care providers more information regarding an infant’s development, “including feeding behaviors, and what to ask parents during well child exams could aid in identifying infants with possible developmental concerns earlier for referral and diagnosis.”
Campbell recently completed a pilot study interviewing mothers whose child was diagnosed with ASD and had feeding difficulties in infancy. While conducting the interviews, almost all of the mothers reported difficulty breastfeeding and all of them had struggles with the infant latching even past the newborn period. Additionally, it appeared that most of the infants with ASD also struggled with taking a bottle; they were either very picky with the nipple, drank slow amounts, or didn’t have the desire to drink from the bottle at all even when they were clearly hungry. Throughout this interview process others also reported unanticipated infant behaviors such as extreme fussiness with feedings that deterred the mother from taking her infant out in public and social cues that were missing during feeding, such as lack of eye contact and lack of smile when the bottle was coming toward the baby. “It was clear from these interviews that these mothers really struggled with feeding their infants later diagnosed with ASD and they were in definite need of support,” says Campbell.
Encouraged by this study, in the long run, Campbell’s research objective is to develop interventions and help pediatric primary care providers identify signs of ASD earlier, including infant feeding difficulties seen more commonly in ASD. She aspires to develop a validated infant feeding screening tool for use in the pediatric primary care setting to identify feeding characteristics that may be indicative of neurodevelopmental disorders, such as ASD. “I also hope to develop breastfeeding interventions to help mothers who may struggle with certain breastfeeding characteristics seen in infants with neurodevelopmental disorders and create new educational initiatives for pediatric primary care providers to assess infant feeding behaviors and identification of neurodevelopmental disorders earlier,” concludes Campbell.
Finally, Campbell would like to thank her faculty advisors, Mulubrhan Mogos, PhD, and Sharon Karp, PhD’08, MSN’99, FAANP, for their continued support and knowledge in guiding her through her PhD program. Furthermore, she would like to acknowledge Julie Barroso, PhD, FNAP, FAAN, for her qualitative expertise and help with her pilot study as well as serving as her dissertation committee co-chair with Dr. Mogos.
[i] What is Autism Spectrum Disorder? https://www.cdc.gov/ncbddd/autism/facts.html
[ii] Learn the Sings of Autism, https://www.autismspeaks.org/signs-autism