Autistic spectrum disorder: Challenges in the medical home

The clinical feature article entitled Building a medical home for children with autism describes the importance of establishing a medical home in a pediatric office for children with a diagnosis of autistic spectrum disorder (ASD). Ms. Nierengarten presents a summary of the presentation by Drs. Hyman and Levy at the 2018 American Academy of Pediatrics Annual Conference in Orlando, Florida in November 2018. Five major management strategies are discussed for the successful management of children in the medical home including the importance of early office-based screenings for all children with the Modified checklist for Autism in Toddlers (M-CHAT) as well as other screening tools, the medical work-up, risks for ASD, interventions for children with a confirmed diagnosis of ASD, and co-morbid conditions. Also discussed, is the importance of establishing meaningful and reciprocal communication with parents. Parents must also be included throughout the decision-making processes for their children and young adults.

Challenging behaviors

Pediatric nurse practitioners (PNPs) play an important role in the medical home for children with ASD. The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5 describes a broad range of clinical features for children with ASD. Speech and language abilities vary greatly and based on their language skills, impact the abilities of the children to interact throughout early childhood and into young adulthood. Children with extremely limited or no verbal communication skills often cause the most concern for parents. Pediatric nurse practitioners often find that these parents require the most support in the medical home or any pediatric primary care practice as the parents often report the presentation of challenging behaviors as well as sleep deprivation for the child and parents. Challenging behaviors may include 1 or more of the following behaviors: non-suicidal self-injury, physical aggression, destruction of property, tantrums, and extreme irritability.¹ Challenging behaviors are not part of the diagnostic criteria for ASD but require the PNP to set aside time to further assess the child, review professional reports from social workers as well as special education teachers, and the specific parental concerns. Pediatric nurse practitioners should review the most current literature for treatment of the particular challenging behavior and establish the treatment plan with the parents. Pediatric nurse practitioners must maintain close follow-up on the child’s progress and the parental emotional state. Some of the most recent successful interventions include modifying the events that precede a target or challenging behavior followed by changing the environment after a target behavior has occurred (National Autism Center, 2015).

Sleep deprivation

Sleep deprivation is another major concern. The child may have 1 or more challenging behaviors during the night which disrupts the child’s sleep as well as the parents’ sleep cycle. Children can be referred to a sleep study center to assess for sleep apnea or other sleep disorders for which evidence-based treatment plans can be developed. It is critical for the PNP to help alleviate the sleep deprivation patterns the child displays for the well-being of the child and the parents. 

Transitioning to adult care

For some children with ASD, life-long care will be needed. The medical home should have an established timeline to help the parents transition their child from the pediatric provider to an adult provider when the child has aged out of pediatric care. This transition period may take place over a few years to help both the parent and child make a smooth and successful transition from pediatric to adult providers, including transitioning from pediatric specialists to adult specialists. Selecting one specialty practice transition at a time may be a good strategy to establish a comfort level for change for both the young adult and the parents. The last transition would be the primary medical home to the adult medical home which may also take place slowly to assure the parents and young adult that continuous high quality healthcare is assured for the entire family. 

References:

1. O'Nions E, Happé F, Evers K, Boonen H, Noens I. How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis. J Autism Dev Disord. 2018;48(4):1272-1286.