Exploring Intersectionality in the Medical Care of a Latino Child With Autism Free

Felix is a boy aged 10 years with autism and attention-deficit/hyperactivity disorder (ADHD) who presents to the pediatric emergency department (ED) for acute behavior change. (The patient’s name has been changed to protect the identity of the patient and family.) The day before presentation, his mother reported “strange” behavior, including decreased interactivity, decreased speech, refusal to enter the house after school, refusal to eat dinner, new urinary incontinence, lip biting, and bruxism.

Medical history reveals autism spectrum condition (ASC), ADHD, and asthma. A complete developmental history is not obtained in the ED, but he was diagnosed with ASC when aged 3 years. His mother reports that his baseline mental status is interactive and conversant. He usually speaks in full sentences in both English and Spanish. He has an individualized education program (IEP) at school. He attends mainstream classes in a public school and receives additional school-based speech therapy. He lives with his mother, father, and siblings. His family self-identifies as Latino, more specifically Dominican, and Black. His mother uses a language other than English (LOE) for medical discussions. She is offered a Spanish interpreter for all medical conversations.

On examination, he is sleepy but responsive to noxious stimuli. He tracks but avoids eye contact with the examiner. His left lower lip is protruding, but his face is symmetric with activation. He does not consistently follow commands. He can resist movement in all 4 extremities but cannot stand unsupported. Sensation is intact. He is also noted to have mild tenderness to palpation in his periumbilical region. He has an episode of fecal incontinence in the ED. Laboratory evaluation including complete blood counts, basic metabolic panel, liver function tests, venous blood gas, lactate, and inflammatory markers are have unremarkable results except for leukocytosis to 14 000/μL. A pediatric neurology specialist is consulted and recommends an electroencephalogram (EEG) and brain magnetic resonance imaging (MRI). Felix receives levetiracetam (40 mg/kg) due to concern for nonconvulsive status epilepticus without improvement in his mental status, and EEG does not reveal seizures. In keeping with a broad differential, serum and urine toxicology values are also obtained, with ultimately negative results.

After initial evaluation, the highest concern is for seizure or toxic ingestion. Other considerations deemed less likely by his medical team include primary behavioral causes, behavior changes secondary to a medical problem that might be causing his abdominal pain, or a structural neurologic process. Decreased speech is not recognized as an acute focal neurologic deficit, and stroke is not explicitly discussed as part of his initial differential diagnosis. Clinician bias about autism and associated communication impairments likely contributed to this oversight. Thus, the brain MRI, which had been ordered as urgent rather than emergent, is not prioritized before admission to inpatient pediatrics, and a computed tomography (CT) scan is not ordered.

On hospital day 1, he is more awake and can verbalize, but his speech is less fluent than his baseline. He continues to have urinary and fecal incontinence. He is unsteady and cannot walk on his own. Notably, he is admitted over a weekend, and MRI scheduling continues to be delayed due to prioritization of scans identified as emergent on the weekends. His mother continues to advocate that although he has autism, when he is well, his speech is fluent and he can ambulate independently, feed himself, and toilet independently. Due to her concerns and his ongoing unexplained deficits, a CT scan of the head is ordered by the primary pediatrics team and is completed 26 hours after presentation to the ED, rather than continuing to wait for MRI.

CT of the head demonstrates an abnormal diffuse hypodensity involving the right greater than left frontal lobe with extension into the cortex. A neurosurgery specialist is consulted, and Felix is transferred to the pediatric intensive care unit for close blood pressure monitoring and frequent neurologic examinations. About 30 hours after ED presentation, MRI and magnetic resonance angiogram are obtained and redemonstrate acute infarction as well as critical stenosis of the bilateral internal carotid artery termini with collateralization consistent with a diagnosis of ischemic stroke due to Moyamoya disease. He undergoes staged bilateral encephaloduroarteriosynangiosis, a neurosurgical revascularization procedure that involves placing a branch of the superficial temporal artery on the surface of the brain. Over time, collaterals from the superficial temporal artery form to bypass the diseased internal carotid circulation. Ultimately, he is discharged home after 44 days in the hospital with physical therapy, occupational therapy, and speech-language pathology support as an outpatient. At the time of discharge, he has no focal neurologic deficits but has social and cognitive impairments that are greater than his baseline disability.

As the adage goes, “time is brain,” meaning that when someone is experiencing a stroke, time is of the essence because brain cells are rapidly dying. Felix endured a delay of more than 26 hours before his symptoms were recognized as indicative of a potential stroke and neuroimaging was requested—a process initiated only through parental advocacy. This prolonged delay in diagnosis and treatment significantly worsened his cognitive impairment. As we reflect on the barriers to clinical care faced by Felix and other patients with autism, we use the framework of intersectionality to explore how neurodivergence, race, ethnicity, and parental-provider language discordance can augment and inhibit the provision of equitable care. Ultimately, our hope in conducting this reflective exercise with vulnerability and humility is to develop and discuss strategies that may help other providers mitigate the impact of oppression on clinical care.

First coined by Dr Kimberle Crenshaw, intersectionality is the study of overlapping or intersecting social identities and related systems of oppression.^1,2 This theory asserts that people are often disadvantaged by multiple sources of discrimination, and this can include their age, sex, race, ethnicity, class, gender identity, sexual orientation, and other identity markers. Importantly, all forms of inequality are mutually reinforcing and therefore must be addressed simultaneously to prevent one form of inequality from reinforcing another.^1,2 In this case, there are many aspects to Felix’s identity that are strengths, such as being bilingual and part of a culture with a strong commitment to family and community. At the same time, as we will discuss, he is more likely to experience multiple forms of oppression and barriers to equitable care because of his neurodivergence, race, ethnicity, and parental-provider language discordance. Furthermore, these experiences are not additive, but instead, individuals at each intersection may have unique patterns of oppression (for example, it is not merely a matter of experiencing both ableism and racism but rather that racism may manifest differently in the context of ableism).

Ableism can be defined as “the privileging of people without disabilities and a structural system of stigma, prejudice, discrimination, and oppression.”³ In ableist thinking, deviation from the norm is assigned negative value, and inferior quality of life is inferred. By extension, neurodiversity is “the wide variety of different minds and brains found throughout the human population”⁴ and an equity-based approach that accepts and values those differences rather than privileging typically developing individuals over those who are neurodivergent. Neurodivergent individuals, or those with brains that have developed differently from the sociocultural norm, often experience bias, which can lead to worse health outcomes. For that reason, we choose to use the term ASC or autism, rather than “autism spectrum disorder,” to avoid projecting negative judgment to the wide spectrum of ability that those with this diagnosis can have.⁵ Additionally, there are many nuances to preferred terminology when writing about people with autism; while many government agencies and medical organizations recommend the use of person-centered language (“person with autism”), many individuals with autism prefer identity-first language (“autistic individual”).⁶ We will use person-centered language to align with the literature; however, we recognize that the best term should be asked of the people with autism.

The language we use impacts both our patients who hear the language describing them and other clinicians, who may make assumptions. Certainly, the diagnosis of stroke can be difficult due to its rarity in the pediatric population and in Felix due to an atypical constellation of symptoms that may not all have been related. Moreover, the clinical syndrome of “altered mental status” around which a comprehensive differential diagnosis can be generated can be more difficult to identify in neurodivergent individuals and requires more attention from clinicians. However, upon deep reflection, the clinical team implicitly assumed that all individuals with autism have intellectual disabilities and/or language impairments and viewed Felix as sleepier, although at his baseline. Such assumptions can be detrimental to patients like Felix who have minimal language impairments or needs. Effective care for individuals with autism requires avoiding assumptions that all behavioral symptoms are attributable to autism. Additionally, obtaining a more comprehensive developmental history at the time of presentation would have provided his mother more time earlier on to share about Felix’s typical functioning.

Racism has long been recognized as a driver of poorer health outcomes in racial and ethnic minority children with autism. Racial and ethnic minority children are diagnosed later, have less access to evidence-based interventions, and have worse outcomes compared with their white counterparts.^7–9 The 2022 National Autism Indicators Report showed that across all income groups, a greater percentage of racial and ethnic minority children with ASC had poorer overall health.¹⁰ Structural racism, including poor access to preventive care,¹¹ underrepresentation in research,¹² and implicit and explicit provider-level biases,¹³ has been implicated in these enduring disparities. This evidence is in line with the lived experiences of many racial and ethnic minority caregivers of children with autism who experience lower markers of quality care and identify dismissal of their concerns and more negative interactions with health care providers.^14,15 As such, Felix and his family’s Black and Dominican identities are imperative to examining this case from an intersectional perspective. We suspect that clinician-held implicit bias related to Felix and his mother’s minoritized racial and ethnic identities contributed to the delays in her concerns being addressed and his imaging being completed.

Examining the role of language—in particular, Felix’s bilingual abilities and his mother’s fluency in Spanish—is central to understanding both Felix’s autism care and delayed stroke diagnosis. Early diagnosis is critical to the care of individuals with autism because it improves access to interventions that have a positive impact on quality of life.¹⁶ Until recently, the prevalence of autism diagnosis was found to be lowest among Latino children aged 4 to 17 years, but those who are diagnosed are more likely to have severe symptoms.¹⁷ These discordant findings demonstrate concern that Latino children with mild to moderate symptoms of autism may be under- or misdiagnosed and are receiving therapies and services at inequitable rates. Concern for missed diagnoses is further supported by a survey of families of children with autism that found that parents with LOE, specifically those fluent in Spanish, were less likely to be asked about development and behavioral concerns by their primary care pediatrician.¹⁸ Use of LOE has also been associated with decreased access to needed therapy services, including applied behavioral analysis.¹⁸ Parents themselves repeatedly cite using LOE as a barrier to autism diagnosis.¹⁹ 

Regarding Felix’s acute hospital course, among patients presenting to pediatric EDs, families with LOE demonstrate higher rates of return visits that result in hospital admission.²⁰ While clinical courses evolve, this finding may highlight greater delays in diagnosis ultimately requiring inpatient-level care among patients and families with LOE. While considering that parental advocacy is a key protective factor in the diagnosis of pediatric strokes,²¹ Felix’s mother’s use of LOE for her advocacy likely led to the same feelings of being dismissed as the parents in the above-mentioned surveys. The intersection of parental help-seeking actions and parental language discordance is an important area for future research.

Using the framework of intersectionality provides an important perspective on the multiple variables that were at play with our patient. Some of the most salient aspects of his identity included his neurodivergence, race, and parental-provider language discordance, which may have contributed to cognitive distortions that affected his medical care. Furthermore, the overlapping layers of identity cannot be analyzed in isolation, as their unique combination matters greatly and must be considered.

More than a year after presentation, Felix continues to recover with multidisciplinary follow-up, but his mother shares that he has not yet returned to his prestroke baseline. Since discharge, he has had 2 ED presentations for headache and gait abnormality in which he had prompt neuroimaging, which did not show any new ischemia. Neuropsychological testing was performed approximately 6 months after discharge and demonstrated a new mild neurocognitive disorder due to a medical condition.

Regarding school, Felix’s IEP was updated to add occupational and speech therapy. Despite these added supports, Felix’s mother highlighted that the intersectionality between his identities as a Black Latino child and a child with learning difficulties still has an impact. She has found that at times, his teachers attribute his inattention to perceived character flaws rather than his known ADHD and cognitive disorder. Additional challenges exist with peers, as Felix’s communication difficulties have been exacerbated by Moyamoya disease, and he continues to experience bullying as a result. While his current school experience is not perfect, his mother is grateful for the many kind teachers and classmates in his life.

Improving clinicians’ recognition of caregiver concerns is paramount to achieving equitable pediatric care, and increasing qualitative research involving interviews with caregivers is an important step to achieve this goal. One such study revealed that age of autism diagnosis is delayed when primary caregivers feel they are not listened to; caregivers describe racism, elitism, and classism as reasons they are ignored.¹⁴ To improve the quality of caregiver-provider communication, providers must take intentional action to foster cultural humility. Cultural humility encompasses a lifelong commitment to self-reflection on one’s biases, acknowledgment of power imbalances in the patient-provider dynamic, and fostering of nonpaternalistic partnerships with our patients.²² Institutions must commit to provide time and resources for clinicians to better recognize both internalized and systemic biases that impact patient care. Project Implicit offers 16 implicit association tests (IATs) that examine test-takers’ personal biases based on physical ability, gender expression, and other sociocultural identity markers.²³ Completing IATs paired with facilitated discussions is one way to help clinicians grow their cultural humility, which will help prevent ignoring caregiver concerns.

In cases like Felix’s, for which the intersection of multiple marginalized identities creates high risk for inequitable care, a proactive pause before or during a clinical encounter to consider one’s own biases may help to recognize and correct potential diagnostic biases in real time. In this case, a proactive pause may have entailed reflection on the nonspecific nature of Felix’s presenting concerns and therefore the necessity of language concordance in the interview with Felix’s mother, further exploration of his symptoms in the context of his developmental history and neurodivergence, and self-interrogation of internalized racism, elitism, and other harmful biases. Engaging in an iterative process of reflection and dialogue with diverse colleagues will lead to recognition of unconscious biases that may undermine responsiveness to caregiver concerns. Providers do not intend to provide suboptimal care but, without vigilance, are easily influenced by implicit biases. Institutions must take responsibility for systemic barriers such as time constraints and overwhelming patient loads that render motivated providers unable to engage in the type of reflective practice that is essential to meaningful progress toward more equitable care.

Clinician-held bias contributed to Felix’s experience and is a well-documented contributor to health disparities.^24,25 Despite increased focus on addressing health inequities in medical education, current curricula may continue to propagate inequities when historically marginalized groups are excluded from cases and images (eg, cases featuring only males reflecting outdated stereotype that autism is predominantly a male condition) or limited to harmful stereotypes (eg, a patient with autism with violent behavior).^26–28 Furthermore, opportunities to highlight inequities and the influence of systems of oppression on patient care are frequently missed (eg, increased cancer mortality in people with diverse disabilities due to systemic discrimination).^29,30 

The literature demonstrates that the more health care providers are aware of the impacts of racism on health, the more likely they are to act to dismantle it.³¹ As the intersectionality framework teaches us, we should not limit education to just racism but rather should include all forms of inequality that affect patient care, including but not limited to ableism, ageism, classism, elitism, homophobia, linguistic discrimination, and sexism. With respect to ableism in particular, education on how best to care for neurodiverse patients across specialties is lacking.^32,33 Expansion of education on the care of patients with autism as well as those with physical and/or intellectual disabilities should be prioritized in medical training. For providers who have completed training, participation in continuing medical education programs focused on the care of patients with autism such as the American Academy of Pediatrics (AAP) Autism Toolkit and PediaLink Autism Identification and Collaborative Care course and Echo Autism should be encouraged.^34–36 

Beyond these important equity-focused topics, we must infuse a recognition of ongoing inequity into all medical education.³⁷ For example, when trainees learn about the manifestations of autism, they must also learn about delays in diagnosis and misdiagnosis in racial and ethnic minority children. There must be deliberate efforts to include diverse children and families in education materials. Lifestyle recommendations should reflect diverse cultures and be applicable for individuals with varying abilities (eg, healthy diet recommendations for a child with sensory sensitivity, and adaptive exercise programs). Finally, trainees must learn skills to care for individuals with different communication needs, such as how to use a medical interpreter and how to interview and physically examine neurodiverse individuals (eg, eliminating florescent lights and loud noises and delaying blood pressure measurement until rapport has been established). One way to achieve this goal is by hearing from a diverse range of patients early in medical school.

Policy changes at the federal, state, and institutional levels are needed to provide the infrastructure and funding necessary to deliver equitable care. Collectively, health care providers can be powerful agents of change. At a local level, providers must recruit, mentor, and support a diverse workforce, which includes individuals of varied age; gender; cultural backgrounds; physical, social, and intellectual ability; and lived experiences. Similarly, providers must recruit patients and families from varied backgrounds, and particularly those from marginalized communities, to participate in patient and family advisory committees and other local decision-making committees. Advocacy for accommodations such as flexible times and locations for meetings, interpretation services, and other incentives may be needed to facilitate participation. Bringing in these varied perspectives will improve care for all.³⁸ 

To provide appropriate medical care for patients with different physical and sensory needs, providers can advocate for necessary facility modifications and equipment. Examples include wheelchair-accessible rooms and examination tables, private and quiet waiting areas and examination rooms, weighted blankets, sensory toys, and visual tools to assist with communications.³⁹ 

Finally, one must advocate at every level to mobilize resources that facilitate caring for patients with LOE and pediatric patients. Caring for patients with LOE requires increasing access to interpreters, including after hours when caregivers or people who work during the day may need to be seen or call for medical advice. Relatedly, to continue caring for pediatric patients, our society must address parity in reimbursement, as adult and pediatric medical care are not reimbursed equally.⁴⁰ This causes a cascade effect including limited access to diagnostics and treatments as in Felix’s case to the closure of many pediatric hospitals.⁴¹ Health care professionals can support legislation that prioritizes funding for services that facilitate quality care for all patients through individual communication with policymakers or by joining professional and community organizations engaged in legislative advocacy such as the AAP and Autism Speaks.^42,43 

In summary, Felix and other children with multiple marginalized identities face intersecting and reinforcing barriers to equitable care. As the concept of intersectionality teaches us and evidenced by the wide-ranging recommendations above, it is important to simultaneously address the varied forms of bias and discrimination impacting patient care to achieve health equity. We as clinicians and educators can begin to combat these barriers by raising the voices of patients and families, infusing diversity and equity into medical education, and advocating for policy changes to provide resources to meet the needs of all our patients.

We wish to acknowledge Ms Ramirez, mother of “Felix,” who provided invaluable contributions to this piece and our Health Equity Rounds Grand Rounds given at MassGeneral for Children in April 2023.

AAP

American Academy of Pediatrics

ADHD

attention-deficit/hyperactivity disorder

ASC

autism spectrum condition

CT

computed tomography

ED

emergency department

IEP

individualized education plan

LOE

language other than English

MRI

magnetic resonance imaging