Complex ADHD Challenging Case: When Simple Becomes Complex: Managing Clinician Bias and Navigating Challenging Family Dynamics in a 6-Year-Old Girl with ADHD and Developmental Delays

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?

Jenna Wallace, PsyD

While this case may not represent diagnostic uncertainty in the view of the seasoned developmental behavioral provider, it certainly displays the diagnostic complexity that many parents, teachers, and individuals seeking diagnosis and treatment experience in the clinical setting.

Autism spectrum disorder and ADHD are often coexisting,¹ with an estimated 1 in 8 youth with ADHD having ASD² and 40% to 70% of autistic individuals having ADHD.³ Both have phenotypes that are highly heritable, with family members of autistic individuals having high rates of ADHD diagnosis, and vice versa.³ While ADHD was diagnosed in Layla's case, she also demonstrates developmental delays and a family history of learning challenges and mental health concerns that may cloud appropriate diagnosis and direct the parents' attention toward symptoms that, in their minds, appear to indicate ASD.

Children with ASD, ADHD, anxiety disorder, feeding concerns, and developmental delays can demonstrate sensory sensitivities and dysfunction.⁴ Despite their similarities, the core diagnostic features that differentiate ASD from ADHD and other neurodevelopmental diagnoses are related to social interactions. While individuals with either ADHD or ASD may struggle to maintain reciprocal friendships,⁵ social difficulties in ADHD are more related to performance deficit. That is, most individuals have intact social knowledge and skills but may struggle with impulsivity and sustained attention that affect interactions.⁶ By contrast, social challenges in ASD are characterized by knowledge deficits.⁷

Layla's parents reported challenges related to her behaviors that were not observed during the assessment visit. Rather, she was observed to maintain appropriate social interactions, despite the parent report of deficits at home. In these situations, it is important to evaluate the persistence of behaviors across settings and help families understand other factors that may be contributing. For example, Layla's perceived hypersensitivity to sound may be related to frequency with which they occur and may be related to her parents' displeasure in her behavior. Her behavioral rigidity and need for control may be related to a complex family system and history of trauma.

Layla's case highlights that detailed and empathetic communication of the appropriate diagnosis and recommendations is equally as important as getting the diagnosis right.

Jennifer Cervantes, MSW, LCSW-S

Attention-deficit/hyperactivity disorder is a diagnosis that for decades has prompted the question of nature versus nurture. Research tells us that there is no single causal factor for ADHD, but that it is highly heritable.^1a While ADHD symptoms are often thought of within the context of pediatric care, providers may also experience ADHD symptoms within the context of interactions with caregivers who have ADHD as well. Personal experience with ADHD, social stigma, a history of trauma, family dynamics within an uncommon family structure, and caregiver disagreement with the diagnosis are all factors complicating this case.

Knowledge regarding polyamory in health care is minimal, and medical training regarding inclusive and culturally sensitive care to this population is limited as well.^2a Studies have documented concerns of polyfamilies regarding their health care experiences, all of which have been found to shape not only their willingness to access health care and the trust they have in medical providers but also the quality of services they receive.^3a This highlights the importance of engagement and rapport building with polyfamilies. While there are limited data on interventions specifically targeting trust in medical settings, many evidence-based therapeutic interventions (e.g., motivational interviewing) use the provider's expression of genuine interest and curiosity as a core component of communication to enhance the therapeutic relationship.^4a From this perspective, a provider might show interest, express curiosity, and ultimately build trust by asking arguably “intrusive” questions regarding caregiver roles within the family and parenting structure.

Behavioral and mental health outcomes for children raised in polyfamilies are variable. Some researchers believe that increased role models within a polyfamily may have a positive effect on development, while others indicate higher rates of anxiety, depression, and low self-esteem in children.^5a A number of studies looking at behavioral parent training found that the biggest predictor of unsuccessful intervention is parental ADHD.^6a In Layla's family, we see the intersection of parental ADHD, a polyamorous family structure, and significant medical, mental health, and social needs. In addition, there are clear inconsistencies in parenting practices. Whether this child is mimicking sibling behaviors or simply recognizing the inconsistencies in the distribution of positive attention, without understanding this family's culture from a systems-based perspective, there will be significant barriers to building rapport with the family, which increases the potential for mistrust between the caregivers and the health care system.

Annie Kennelly Helms, MD, FAAP

The presentation of a school-age child with caregiver concerns for ADHD and ASD is a common occurrence among pediatric health care providers. There are many psychosocial factors potentially influencing the trajectory of this child's care but also several factors potentially influencing how the provider perceived the family. There have been many studies related to implicit bias and the management and treatment of ADHD symptoms in both adults and children. We also know that implicit bias can subconsciously shape physician behavior and produce differences in medical treatment.^1b Individuals with ADHD are at a higher risk to be confronted with stigma, prejudice, and discrimination.^2b

How do providers mitigate implicit bias? Although implicit bias in health care has become more widely understood, approaches on how to manage this bias are varied and display mixed results.^3b Much of the research surrounding implicit bias highlights curricula geared toward trainees, and information to guide providers who are no longer in training is less common.^3b,4b Various psychosocial stressors that may prevent us from recognizing their areas of strength and resiliency complicate this family's case. Reflective practice is a recommended strategy for developing self-regulated learning skills that can lead to enhanced competence, humanism, and professionalism.^5b

We know that positive childhood experiences (PCEs) reduce the effects of adverse childhood experiences (ACEs) and have positive effects on mental health and relationships.^6b PCEs include a child's ability to confide in their parents, happiness in school, comfort from friends, but also a parent's understanding of a child's problems, and the level of community support the child receives.^6b,7b A child's pediatrician can be an immense source of trust and support to families and fostering PCEs as well as familial strengths can potentially help reduce negative effects of implicit bias. Considering external environmental factors is of particular importance when working with a child and caregiver with ADHD, but an equally important part of this case would be self-reflection to ensure equity of care. Using a strength-based framework and working to highlight PCEs with this patient and her family perhaps would have helped open the door for conversation regarding the root of disagreement related to the child's diagnosis.

Jason Fogler, PhD and Elizabeth Diekroger, MD

This case illustrates how, even when diagnosis and treatment planning seem “straightforward,” care cannot proceed without mutual trust and a strong treatment alliance. In reference to the Complex ADHD Guideline, Layla's case exemplifies the importance of cultural sensitivity and collaboration with the family (Key Action Statement 2) as well as respect for family values and preferences (Key Action Statement 4).^1c As highlighted by the other commentators, genuine curiosity and rapport-building are key to effective ADHD management in cases, such as this one, in which clinician blind spots and insensitivity around family structure and culture could endanger the therapeutic alliance. In this case, polyamory is the family characteristic that the clinician needs to respect and connect to, honoring the humanity of family members. At a time when the medical field is being urged to reclaim its humanistic values from the forces of “corporatization,”^2c we so often tell our trainees “always choose rapport.” Knowledge and clinical acumen are necessary, but not sufficient to build bridges and repair misunderstandings, perhaps especially for families that routinely experience the negative effects of clinician and systemic bias.^3c Taking the time to work through the trial and error recommended by the process of care algorithms within the Complex ADHD Guideline makes a strong therapeutic alliance and trust between a family and a provider essential to effective care.^4c