Affiliation:
1. Department of Pediatrics, Baylor College of Medicine & Texas Children's Hospital, Houston, TX;
2. Unlocking Potential, PLLC, Fairmont, WV;
3. Department of Developmental Pediatrics, Children's Hospital Colorado & University of Colorado, Aurora, CO;
4. Division of Developmental-Behavioral Pediatrics and Psychology, UH Rainbow Babies and Children's Hospital & Case Western Reserve University School of Medicine, Cleveland, OH; and
5. Division of Developmental Medicine, Boston Children's Hospital & Harvard Medical School, Brookline, MA.
Abstract
CASE:
Layla is a 6.7-year-old girl diagnosed with attention-deficit/hyperactivity disorder (ADHD)—predominantly hyperactive/impulsive type—delayed adaptive skills, enuresis, unspecified malnutrition, and feeding difficulties. She presented to developmental-behavioral pediatrics (DBP) in January 2022 due to caregiver concerns for autism spectrum disorder (ASD).
Layla lives in a polyamorous family with her biological mother and father, mother's partner whom Layla refers to as her uncle, and her 2 half-siblings. There is a maternal history of special education services, schizoaffective disorder, bipolar disorder, multiple sclerosis, Wolff-Parkinson-White syndrome, and ADHD. Layla's father is a veteran diagnosed with post-traumatic stress disorder. Layla's siblings, aged 5 and 9 years, have established diagnoses of ADHD, ASD, global developmental delays, behavioral concerns, and poor sleep. There is a history of adverse childhood experiences, including parental mental health, poverty, and involvement with child protective services. Acknowledgement and inclusion of all members of this diverse family structure, as well as consistent validation from the DBP and social worker, allowed a strong treatment alliance to form and the mother continued to contact the DBP clinic, even for those questions related to other specialties. A social worker received weekly calls from the mother sharing grievances related to feeling misunderstood and spoke about the assumptions she felt external providers made about her family, culture, and parenting styles. For example, she recalls the pediatrician commenting about their family structure being “confusing for the children” and describing their home as “chaotic,” assumptions that may not have been made of nuclear family structures. Behavioral therapies were a repeated recommendation, but the mother verbalized not being interested in these options as she had participated in parent management training several years earlier and felt that the strategies taught were not applicable to her unique family structure, to which the clinician replied, “this is the standard recommendation for all children this age with disruptive behaviors.” Although the mother was initially hesitant to trial medications, she eventually agreed that Layla's symptoms were negatively affecting her school performance, and the DBP initiated a stimulant medication.
Layla's initial evaluation included a developmental history, behavioral observations, and standardized testing. The results from developmental testing demonstrated age equivalents between 4 and 6 years across gross motor, adaptive, visual motor, and speech-language domains.
On observation, Layla was extremely active. During the visit, she walked over to her mother, made eye contact, and showed her the picture that she had drawn. She engaged in imaginary play, reciprocal conversation, and responded to social bids. The mother felt strongly that Layla had ASD and reported symptoms such as motor stereotypies (hand flapping), covering ears with certain noises/sounds, and rigidity when it came to things being a certain way or a certain color. These behaviors did not occur in the initial or subsequent clinic visits with DBP, her general pediatrician, or during other outside evaluations the mother pursued. The DBP felt strongly that Layla was mimicking her siblings' symptoms and provided ongoing education regarding ADHD symptomology.
In terms of behavior management, the mother did not attempt to redirect Layla's behaviors during the initial clinic visit and in subsequent visits, and both adult men yelled loudly, clapped, and hit their hands on the table as a form of redirection. The mother continued to voice her diagnostic disagreement with the DBP and the pediatrician and insisted that Layla met the criteria for ASD. When the mother reviewed the report, a statement insinuating that Layla's behaviors were “understandable given parental inconsistency and complicated family structure” upset her.
What factors would you consider when thinking about caregiver disagreement with the diagnosis and treatment plan? Does diagnostic overshadowing apply here?
Publisher
Ovid Technologies (Wolters Kluwer Health)