A Scoping Review of the Intersectionality of Autism and Intellectual and Developmental Disability with Social Inequity on Diagnosis and Treatment of Youth

Abstract

Objective:

To describe how the intersectionality of race, ethnicity, and language with autism and intellectual and developmental disability (IDD) impacts mental health inequities in psychopharmacological management of youth.

Method:

This was a scoping review in which a series of searches were conducted in PubMed, Web of Science, Google Scholar, and manual review of the articles collected.

Results:

Although autism and/or IDD increases the risk for poor physical and mental health, social determinants of health such as race, ethnicity, and language account for approximately a third of poor outcomes. Minoritized children with autism/IDD experience significantly greater delays to diagnosis and misdiagnosis and are less likely to receive appropriate services. Access to psychological testing and psychosocial services is often limited by availability, skilled practitioners, a shortage of non-English-language providers or interpreters, and poor reimbursement.

Conclusion:

The intersectionality of autism and/or IDD with race, ethnicity, and language compounds the health inequities associated with either of these challenges independently.

Introduction

The term “intersectionality” has been used to describe the unique challenges faced by patients with both a disability and racial or ethnic minoritized group status, leading to the conclusion that “future research with an intersectionality approach is recommended to promote equity” (Williamson et al., 2023). Shim et al. define intersectionality as “the cumulative effects of race, class, gender, sexuality, ability, and other marginalized identities on social status and health” such that these oppressed identities can compound harmful mental health impacts (Shim, 2021). She defines “structural competence” as “the ability to discern how downstream clinical symptoms, problems, and diseases are influenced by upstream social determinants of mental health.” Our objective here is to look at how treatment, particularly medication management of psychiatric disorders in autistic and/or intellectual and developmental disability (IDD) children, is influenced by specific health inequities, in the hope of raising awareness among clinicians of proactive strategies to build the structural competence needed to remediate these inequities. We have used the acronym autism/IDD to refer to either condition alone or in combination, along with youth who would be described as having developmental delay or developmental disorders who might not have had a full diagnostic evaluation to meet the Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-5) diagnostic criteria. We have used identity first language for autism out of respect for the wishes of the autistic community.

Recommendations to address the intersecting inequities of autism/IDD and minority status include the need to shift from deficit- to person-centered models and acknowledge people’s multiple identities (Kover and Abbeduto, 2023). Kover et al. define “the work ahead toward equity in research on intellectual and developmental disabilities” as requiring that we address entrenched assumptions and practices of intellectual and developmental disabilities research by explicitly describing the status quo in terms of models of disability, participant and researcher identities, research priorities, and biases in measurement and treatment approaches. Explicit identification and remediation of the health inequities resulting from “systemic, avoidable and unjust policies and practices” are required to mitigate barriers to adequate care (Shim, 2021).

Several mechanisms have been proposed to explain the mechanisms that drive intersectionality of autism/IDD with social disadvantage, including a lack of diversity in the research workforce (King and Parisi, 2023) and a lack of diverse representation in recruitment samples for research. Barriers to access to treatment, including inability to test in languages other than English and Spanish, lead to disparities in children’s access to psychological evaluation (Diemer et al., 2023). Lack of access to testing in turn jeopardizes accurate diagnosis, without which patients may not receive appropriate and personalized medical, psychological, and educational services. Health insurance for immigrant populations limits access to treatment outside of overburdened safety net hospitals. For example, in Massachusetts, children insured by the state’s Children’s Medical Security Plan for immigrant children are not eligible to receive the in-home and family interventions provided by the state Medicaid program (MassHealth Standard) or specialized treatment services for autism such as applied behavior analysis (ABA).

In this context, we hypothesize that the intersectionality of developmental disorders with social disadvantage in youth belonging to a minoritized racial, ethnic, or language group might impact access to proper and timely assessments and nonpharmacological treatments as well as medication, choice of medication, patient acceptance and adherence to medication, response to medication, and provider compliance with evidence-based decision making. We did a scoping review to determine if there was evidence to support this hypothesis.

Method

The authors followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses - Scoping Reviews (PRISMA-ScR) guidelines for scoping reviews (Tricco et al., 2018). Articles were retrieved from PubMed, Google Scholar, and Web of Science as well as by manual review of the reference section for each article retrieved. Search terms included autism, developmental delay, intellectual disability, intellectual and developmental disorder, health equity, and health disparity. Searches were also conducted on particular issues such as specific medications, measures, psychological testing, race, or language using “text terms” in PubMed. The search was limited to articles published in English after the year 2000 in peer-reviewed journals, including empirical articles, reviews, and commentaries. Out of 120 references, 83 were included in the review, and 37 were excluded. References were excluded if they were case reports, case series, not specific to the population studied, related to medications other than those reviewed, focused on caregivers rather than offspring, used measures that are not available or validated in English, exclusive to quality of life, focused on issues of neurobiology, or changes in prescribing over time. All articles were independently reviewed by two of the authors (M.D.W. and D.R.). We did not assess the risk of bias.

Results

Health inequities associated with autism/IDD

Developmental impairments create conceptual, social, and practical challenges for affected individuals that negatively impact their quality of life (Straub et al., 2022), capacity for independent living (Dean et al., 2021, Straub et al., 2022), and participation in society (Dean et al., 2016), which could, in turn, be expected to lead to health disparities. Intellectual disability has been demonstrated to put individuals at risk for health inequities in access to care, quality of care, and outcomes (Anderson et al., 2013). Inequities in health have been observed among those with developmental delay from early childhood, which results in a 4.5-fold increase in risk for poor physical health and double the risk for an emotional disorder, as compared with the general population (Emerson and Brigham, 2015). Persons with developmental disabilities experience inequities in health status, quality of care, utilization, access, and unmet health needs (Prokup et al., 2017). A pharmacovigilance study of adults with both autism and IDD found 37% multimorbidity (mean of three disorders) and 57% polypharmacy (Espadas et al., 2020). IDD adults are more likely to use the emergency department and to be hospitalized (Lauer et al., 2021). Expenditures for children on Medicaid with autism are 10-fold those of other children, a difference that was driven in large part by inpatient psychiatric care, while there were no differences in outpatient expenditures, suggesting that autistic children might be better served by improved access to primary care and outpatient community care (Mandell et al., 2006).

Limitations in measurement informed care for autism/IDD

Measurement-based care has become a cornerstone of good clinical practice and an essential tool in assessment, collection of collateral information, and evaluation of outcome, creating barriers to best practice and research if measures in common use are used in the autism/IDD population without being validated in that population. There are well-validated, broad-based scales for use in autism/IDD such as the WHO Disability Assessment Schedule Intellectual and Developmental Disabilities (WHO-DAS-IDD) (Schmidt et al., 2010), the World Health Organization Quality of Life for Intellectual and Developmental Disabilities (WHO-QOL-IDD) (Bredemeier et al., 2014), the Retrospective‐Modified Overt Aggression Scale completed by the parent (Margari et al., 2005), the Adaptive Behavior Assessment Scale (Emam et al., 2019), the Aberrant Behavior Checklist 2nd Edition (ABC-2) (Kaat et al., 2021), and the Clinical Global Impressions (Toolan et al., 2022). However, none of these scales provide diagnosis-specific information on severity or response to treatment.

Commonly used scales in the public domain such as the National Institute for Children's Health Quality (NICHQ) Vanderbilt for attention-deficit/hyperactivity disorder (ADHD) (Anderson et al., 2022) or the Screen for Child Anxiety Related Disorders (SCARED) for anxiety (Haley et al., 2011) are not validated in autism/IDD populations. Nonetheless, they are used and interpreted as they would be for neurotypical patients. This can be problematic. For example, parent and teacher reports of ADHD symptoms on the Vanderbilt may be consistent with population norms for age and gender of the child’s developmental age, whereas they would be considered in the clinical range for norms developed based on chronological age. ADHD symptoms may also be driven by the inability to pay attention when what is being taught is not comprehensible to the patient’s level of learning or language ability. Symptoms of anxiety may reflect a child’s reaction to trying to function in a mainstream classroom where they are overwhelmed by demands that are tailored to a neurotypical child, creating anxiety that is actually appropriate, rather than inappropriate, to the situation.

In summary, assessment in autism/IDD is broadly challenged by difficulty with self-report, measurement-based care, access to testing, and absence of diagnosis-specific measures validated in this population. The absence of diagnosis-specific measures in the public domain will impact the provision of best practice and measurement-based care in the safety net settings where disadvantaged patients receive their care.

Health inequities associated with intersecting developmental delay and race, ethnicity, and language

Inequities associated with developmental disorders interact causally and bidirectionally with adverse social determinants of health (SDOH) (Emerson and Brigham, 2015, Emerson and Hatton, 2007a, Emerson et al., 2023, Haller et al., 2022), with as much as 24% of poor health and 37% of the risk for an emotional disorder being explained by the socioeconomic disadvantage as opposed to the autism/IDD itself (Emerson and Hatton, 2007a, Emerson and Hatton, 2007b). Adolescents with IDD are more likely than nondisabled peers to experience socioeconomic disadvantage and bullying (Hatton et al., 2018).

Identifying as part of a marginalized group has been associated with poorer health outcomes among individuals living with developmental conditions. Black American caregivers of youth with developmental disorders were less likely than White caregivers to be able to afford medication and mental health care, and both Black and Latinx caregivers were less likely to have seen a doctor in the past year than their noncaregiving counterparts. Black and Latinx IDD adults had worse health outcomes as compared with White adults with IDD, and Black and Latinx adults with IDD had worse health outcomes than nondisabled adults from the same racial and ethnic groups (Magana et al., 2016). A scoping review of adult racial and ethnic minorities with developmental delays found 35 articles, of which 29 identified health inequities in minoritized individuals versus White individuals (Williamson et al., 2023). The Centers for Disease Control and Prevention (CDC) reports that African American children will experience delays in diagnosis and obstacles to service access as well as a disproportionate burden of intellectual disability (CDC, 2019).

In summary, intersectionality of developmental concerns and race, ethnicity, and language increases poor health outcomes (Allport et al., 2023), as compared with either risk factor alone. This relationship was significantly worse during the pandemic (Buckley et al., 2023, Gulati et al., 2021), although data collection from families caring for children with developmental delay (Landes and Turk, 2023) was limited during the pandemic.

Impact of the intersectionality of developmental disorders and social inequity on diagnosis

Racial and ethnic minority youth have higher rates of misdiagnosis of emotional and behavioral problems in general (Liang et al., 2016). Research has established that there is a substantial lag in autism diagnosis for racial and ethnic minority children among 7,950 children in the Early Childhood Longitudinal Study (Gallegos et al., 2021). Characteristics associated with delays in assessment for developmental services are minoritized racial status, poor economic status, and low parental education (Gallegos et al., 2021). Black children, Asian children, families where the primary language was not English, and those who lacked health insurance at age two were least likely to receive an early diagnosis. Some of these groups may also have inconsistent primary care or difficulty communicating with the primary care team about the developmental concerns which would lead to the developmental assessment so that when these children enter preschool, daycare, or kindergarten, and they are incorrectly viewed as “behavior problems”.

Black and Latinx children are at decreased odds of receiving services by preschool. Black children were 2.6 times less likely than white children to receive an autism spectrum diagnosis on their first visit to specialty care, with ADHD being the most common diagnosis (Mandell et al., 2007) and three times more likely to receive another diagnosis such as conduct disorder or adjustment disorder before diagnosis of the developmental disorder. On average, racial and ethnic minority children are diagnosed with autism spectrum 1.4 years later than white children and spend eight more months in mental health before receiving a correct diagnosis. The average age of autistic spectrum diagnosis in Black children is 64.9 months, which in turn is 42.3 months after parents first expressed concern about the child’s development (Constantino et al., 2020).

Safety net institutions that serve marginalized populations have limited access to psychological testing and resources. Access to private neuropsychological testing is not an option for patients with limited insurance or financial resources. In clinical settings, a majority of IDD cases may go unrecognized (Delahunty et al., 2022, Pogge et al., 2014). Although IDD has a known prevalence of approximately 2% of the population (Henderson et al., 2020), there is a large group of patients with a broad range of developmental concerns associated with cognitive challenges and delays in adaptive function, who have not received formal testing to confirm the IDD diagnosis (Robinson et al., 2020). Evaluation of children who do not speak English is difficult because of the inability to differentiate language difficulties from other types of cognitive delays. Children who cannot use the classroom because of language and/or cognitive barriers will be bored and will act out, which in turn may precipitate a behavioral health referral, at which point the most accessible, but not necessarily the most appropriate option for treatment, may default to medication management.

Impact of the intersectionality of developmental disorders and social inequity on psychosocial treatment

Patients with autism/IDD face particular challenges in managing diet, sleep, screen time, exercise, and other basic life skills. Treatment of these challenges requires family and individual psychoeducation and behavioral management, and these psychosocial treatment skills require training, are time consuming, and are difficult to access. The World Health Association has developed a Caregiver Skills Training program for global dissemination to improve access at the global level for psychological intervention for developmental disorders in low- and middle-income countries (Salomone et al., 2019), but this is less well established in economically disadvantaged areas of the United States that may share some of the challenges of low- or middle-income countries.

Impact of the intersectionality of developmental disorders and social inequity on medication treatment

Our search did not identify disparities in medication treatment based on race, ethnicity, and language in patients with developmental disorders, although the literature described earlier would raise concerns that this might be a concern. This finding also raises a concern about how off‐label prescribing increases the risk of health inequity in medication management of developmental disorders.

Inappropriate prescribing of psychotropic medication for patients with autism/IDD represents an ongoing problem. Even with the high prevalence of psychiatric disorders in this population, the rate of prescribing of psychotropics exceeds the prevalence of mental health diagnoses (Dekker and Koot, 2003, Mazza et al., 2020, Sheehan et al., 2015). As many as 86% of patients with IDD have been observed to be taking psychotropic medications and 69% were taking three or more medications from two or more drug classes. Two-thirds were prescribed antipsychotics (in the absence of psychosis or bipolar disorder), and one-third were prescribed anticonvulsants in the absence of a seizure disorder (Branford et al., 2023, McLaren et al., 2021). Medication costs have been found to be the primary driver of total health care expenditures for patients with IDD in the United States (Fujiura et al., 2018).

Systematic empirical studies of health inequity in pharmacological outcomes of mental health problems in youth are few and far between. In the general population of children with psychiatric disorders, non-Hispanic Whites are more likely to receive treatment for anxiety and depression than Latinx and Black Children (Liang et. al 2016), with Black children more likely to be diagnosed with disruptive behavior, conduct disorder, and psychotic disorders.

Research on how race, ethnicity, and language moderate medication outcomes for autism/IDD is limited. One of the reasons for this is that current studies do not reliably report race, ethnicity, and language in a standardized format to facilitate analyses or meta-analyses of intersecting health inequities. A recent systematic review of antidepressant studies in children and adolescents found that almost two-thirds of studies only partially reported racial and demographic information and slightly more than a third omitted ethnicity and demographics altogether (Ruiz et al., 2023). Standardized criteria for reporting and analysis of race, ethnicity, and language in publication of all randomized clinical trials are essential to addressing this gap in the literature and should be included in the recommendations of the International Committee of Medical Journal Editors guidelines.

Disadvantaged populations are underrepresented in randomized clinical trials, but even when they are included, SDOH and race, ethnicity, and language are rarely evaluated as moderators or mediators of outcome in the statistical analysis. By failing to both report and analyze health inequities in randomized clinical trials, we are unwittingly contributing to those inequities.

Furthermore, placebo-controlled randomized studies do not include controls to evaluate differential response of disadvantaged subjects within each arm of the study. Real world, effectiveness studies that control for impact of race, ethnicity, and language might identify health inequities impacting outcome in access to pharmacological treatment, access to particular drugs, physician bias or insurance limitations in the selection of drugs, patient acceptance of medication treatment, patient compliance, time on the drug, the likelihood of deprescribing, response to drug, as well as the likelihood of adverse somatic and psychiatric outcomes.

Impact of the intersectionality of developmental disorders and social inequity on antipsychotic treatment

Antipsychotic treatment has been found to account for 50% of the cost of care of developmental disorders (Croteau et al., 2019). Antipsychotics are often prescribed, sometimes for off‐label challenges such as anxiety, repetitive behaviors, or sleep (Ballester et al., 2022, Henderson et al., 2020, Hughes-McCormack et al., 2021). In order to evaluate intersectionality in use of antipsychotic treatment, it is first necessary to review the gap between evidence-based recommendations and actual clinical practice in use of these medications in patients with autism/IDD. Inappropriate use of antipsychotics can itself be considered a health inequity associated with autism/IDD.

Despite recommendations to prescribe antipsychotics for short‐term, episodic use only (Sheerin et al., 2021) and evidence that 68%–82% of patients on antipsychotics can successfully discontinue them (Ramerman et al., 2019a, Ramerman et al., 2018, Ramerman et al., 2019b), in practice, patients are kept on antipsychotics for long periods of time, even, in some instances, when metabolic side effects are compromising health (Aman et al., 2015, Deutsch and Burket, 2021, Olfson et al., 2015, Saldana et al., 2014). Although antipsychotics are clearly efficacious for various targeted symptoms, they are also associated with increased risks of weight gain, metabolic changes, dyslipidemia, diabetes, hypertension, somnolence, depression, movement disorders, and decreased life expectancy and quality of life (Aman et al., 2015, Buitelaar et al., 2001, Fallah et al., 2019, Findling et al., 2004, Pringsheim and Gorman, 2012, Snyder et al., 2002, Van Bellinghen and De Troch, 2001). Populations who have metabolic conditions before treatment associated with SDOH such as diabetes, obesity, and hypertension (Eyles et al., 2023) are going to be at increased risk for metabolic side effects. Afro-American patients are also at increased risk for metabolic side effects (Jerome et al., 2020).

It is possible that one potential clinical pathway to prescribing of antipsychotic medication for off label indications occurs in the transition between inpatient or emergency services and outpatient care. It is not uncommon for patients admitted to the emergency, urgent care, or an inpatient setting during an acute behavioral crisis to be started on low doses of an antipsychotic. Following transfer back to the outpatient setting, the treating psychiatrist may be reluctant to taper or discontinue the medication that has stabilized the patient in crisis, whereas more of the intensive supports associated with the inpatient setting are no longer in place and the social triggers to the crisis remain unchanged.

Autistic children are 1.84 times more likely to have difficulty with obesity, putting them at even greater risk with antipsychotic treatment (Zheng et al., 2017). Nationally representative data demonstrate that autistic children are at increased risk for obesity, starting at an early age, partly as a result of exposure to antipsychotics (Curtin et al., 2010). Specific modifications of the American Academy of Pediatrics guidelines for management of obesity in autistic children have been proposed (Curtin et al., 2020). Thom et al. (2022) looked at the clinical correlates of BMI and hypertension in 622 autistic adults, in a sample that was 89% White, 4% Black, and 2% Hispanic. The risk of being either overweight, obese, or severely obese was found to be consistent with what is observed in the U.S. general population. Sixty-eight percent of the White subjects had a BMI >25 versus 81% of the Hispanic subjects and 89% for the Black subjects. This would suggest increased risk for being overweight among the Black and Hispanic patients, but whether this represents a vulnerability specific to antipsychotic treatment is unclear, especially since this study did not find past or current SGA use to be associated with BMI (Thom et al., 2022).

Impact of the intersectionality of developmental disorders and social inequity on outcomes with alpha agonists

Given the overuse and risk associated with antipsychotic medications in developmental disorders, one would anticipate that there would be strong interest in looking at pharmacological alternatives to antipsychotics for management of mood dysregulation, irritability, sleep disorders, and impulsive aggression. The relative paucity of research in this area can be considered a research inequity with the clinical downstream outcome that conscientious clinicians who use other medications before initiating an antipsychotic are by default practicing off-label or at least without supportive evidence.

Although alpha-agonists present a potentially safer alternative for management of tantrums, emotional dysregulation, sleep, or aggression, the evidence base for use of alpha-agonists in autism/IDD is sparse, and we did not retrieve any studies of comparative effectiveness and safety in comparison with antipsychotics. The evidence to support the use of clonidine in autism/IDD is extrapolated from one crossover study of clonidine in children to treat ADHD (Agarwal et al., 2001), which may have limited relevance.

We identified three studies of guanfacine in IDD. A retrospective open‐label observational study of a mixed group of 80 children found that 17.9% of patients with IDD responded, which was less than those without IDD (Posey et al., 2004). This study suggests that we cannot assume that findings done in clinical trials with neurotypical children can be extrapolated to IDD children without being studied in the IDD population. An open-label study of guanfacine in 23 children with Down syndrome found a 25% decrease in the ABC‐2 irritability, hyperactivity, and composite scores with a moderate effect size (Capone et al., 2016). A double-blind, placebo-controlled crossover randomized-controlled trial (RCT) of guanfacine in 11 children with ADHD and either IDD or Autism Spectrum Disorder (ASD), of which 8 had IDD, found improvement in the ABC‐2 hyperactivity subscale in five children and no response on the other subscales or the composite score (Handen et al., 2008). A majority of nonresponders had moderate versus mild IDD. Taken together, these studies suggest a potential, but modest, response for treatment of behavioral problems with guanfacine in autism/IDD children.

Given the paucity of studies, poor design, and small N of these studies, we do not have the evidence we need to determine if alpha agonists might present both a safer and an effective alternative to youth with developmental disorders or minoritized youth with developmental disorders who are at increased risk of metabolic side effects.

Impact of the intersectionality of developmental disorders and social inequity on outcomes with antidepressants

The prescription of antidepressants for IDD has doubled since 2010 and is twice that of the rate of antidepressant use in the neurotypical population (Branford and Shankar, 2022) despite very limited evidence of efficacy in children with IDD (Janowsky et al., 2005, Ulzen and Powers, 2008, Verhoeven et al., 2001). The evidence to support the use of antidepressants in this population is extrapolated from their use in neurotypical children. Despite being prescribed to 25% of children with developmental disorders, there are limited methodologically robust RCTs or real-world effectiveness studies (Branford and Shankar, 2022, Deb et al., 2008, Sohanpal et al., 2007, Zhou et al., 2020) of antidepressants in autism/IDD. One RCT of citalopram in autism (Siegel et al., 2020) failed to show benefit on either the Clinical Global Impressions‐Improvement scale or the composite ABC‐2. The only statistically significant finding in this study was on the irritability domain of the ABC‐2, with an effect size of 0.3 without correcting for multiple comparisons. This study identified significant side effects including activation, stereotypy, diarrhea, insomnia, nightmares, and seizures. Research to date indicates that selective serotonin reuptake inhibitors (SSRIs) are poorly tolerated and ineffective for repetitive behaviors (Hellings, 2023, Yu et al., 2020) and anxiety (Simonoff et al., 2022) in autism. Widespread use of antidepressants in youth with developmental disorders, in the face of either an absence of evidence or evidence of deleterious outcomes, illustrates how inappropriate use of medication can in itself be conceptualized as a health inequity.

Likewise, few studies exist on the impact of combination treatment with both antidepressants and antipsychotics, although again, pharmaco-epidemiological studies have found that this is a relatively common clinical practice (Henderson et al., 2021). Studies of combined treatment with antipsychotics and antidepressants have demonstrated that this combination selectively increases the risk of metabolic side effects. A study of combination antipsychotic with antidepressant in patients with bipolar disorder or schizophrenia (without developmental disorders) compared patients receiving combination antipsychotic with antidepressant to patients receiving antipsychotic alone and found statistically significant increases in both cholesterol and glucose (Burcu et al., 2017). Combination treatment is associated with a 1.8‐fold increase in the odds ratio risk for diabetes, which has been found to be 50% higher than with risk using antipsychotic alone (Burcu et al., 2017, Rubin et al., 2015). Population studies have also identified potential risk for iatrogenic diabetes mellitus with combination antipsychotic and antidepressant (Fjukstad et al., 2016, Fjukstad et al., 2018). This issue has not been studied in the IDD population, although as many as 22.5% of IDD patients will have metabolic syndrome, and patients with IDD are considered to be more vulnerable to metabolic side effects (Vancampfort et al., 2020).

In summary, inappropriate use of antipsychotic treatment, antidepressant treatment, and combination antipsychotic and antidepressant treatment is widespread, presenting unique risks both to the patients with autism/IDD who take these drugs off label, and especially those patients who belong to minoritized racial, ethnic, and linguistic groups, or who have social disadvantages that put them at greater risk of deleterious outcomes. In the meantime, there is limited comparative effectiveness research into potentially safer alternatives such as behavioral interventions or alpha agonists. Pediatric psychopharmacologists struggle to manage clinical situations that represent the downstream effect of the cumulative effects of intersectionality between this disability and race, ethnicity, language, social status, and health (Shim, 2021).

Hidden in plain sight: Case report illustrating the intersectionality of developmental disability and race, ethnicity, and language

Benicio first presented for psychiatric evaluation at the age of 7 years after emigrating from Brazil. He had been born at 26.5 weeks weighing 900 g and was in the neonatal intensive care unit in Brazil for 45 days because of infection. Family history was positive for ADHD and depression in the mother and ADHD and bipolar disorder in the father. The mother complained that she did not like to be touched, felt she was very literal, had difficulty with language as a child, and depended on her children to help her interpret social context.

The family was noted to have experienced significant past trauma including abuse of the mother as a child, difficulty with immigration, and being unable to afford rent. Benicio reported being hit by his father, missing his grandparents and the dog he had to leave behind in Brazil, being bullied at school, and fighting between his parents. The parents were informed that in the United States, they could not hit Benicio, after which the father stopped speaking to him in order to avoid becoming frustrated by his behavior. His mother was working 12 hours a day and struggled to care for her two special-needs children. Benicio’s 17-year-old brother was diagnosed as having ADHD, anxiety, depression, and high-functioning autism.

Benicio was initially diagnosed as having “unspecified depression” because he was sad but did not have vegetative symptoms. School collateral, observation, and parent and teacher Vanderbilt scales confirmed a diagnosis of ADHD. He received trials of methylphenidate, osmotic release oral system (OROS) methylphenidate, methylphenidate Long Acting (LA), and dexmethylphenidate extended release (XR), all of which led to improvement but not remission of ADHD symptoms, with no response for irritability, aggression, being “easily emotional,” and anxiety. Benicio was preoccupied with his gecko that he carried everywhere. His chief complaint was a feeling that things around him did not feel real and that “he is dreaming even when he is awake.” He complained that he could not understand why other children did not like him. Evaluation for functional impairment on the Weiss Functional Impairment Rating Scale Parent Report (Weiss et al., 2018) indicated difficulty with learning and behavior at school, sleep, eating, poor self-concept, getting along with others, and damaging property. Benicio was maintained on dexmethylphenidate XR 30 mg and escitalopram 10 mg from the age of 7–12 years.

After six years of mental health treatment in the United States, the mother was informed that she had the right to ask for psychological, speech and language, and occupational testing from the school, which under Massachusetts law had to be done within 45 days following parent request. Although Benicio had an Individual Education Plan (IEP) and had been in English immersion in the United States for five years, testing had been delayed because of concerns about English language skills. Selective findings on the testing include observation of flat affect and limited spontaneous conversation and Full Scale Intellectual Quotient (FSIQ) in the “very low” range. Teacher Behavior Assessment System for Children (BASC 3) found him to be “at risk” for depression, somatization, attention, withdrawal, avoidance of social contact, adaptability, social skills, study skills, and functional communication. Behavior Rating Inventory of Executive Function (BRIEF) was >99th percentile for difficulty with initiation. Achievement was low average with noted difficulty with elaboration.

At the age of 13 years, Benicio’s mother expressed concern that he had had a bowel movement in the bathtub. Benicio also revealed that he had been sexually active at the age of 11 years and was barred from having contact with particular girls at school. The school had called the police after he was physically aggressive with the parent of another child, and he was expelled from the after-school program. This meant the mother no longer had childcare and had to give up her job and try to work from home. Benicio started complaining of a voice inside his head screaming at him but, on observation, did not appear to have a psychotic disorder. As a result of the seriousness of these behaviors, he was started on risperidone 0.5 mg po bid, and at the family’s request, dexmethylphenidate XR was discontinued. The treating psychiatrist requested a second opinion, and the consultants recommended an evaluation for autism.

The autism evaluation was positive for difficulty with social communication including to-and-fro conversation, absence of chit chat, repetitive speech, lack of interest in other children, wanting to be alone, unusual facial expressions, and early confusion of pronouns. He had difficulty with emotional regulation, empathy, perspective, rigidity, pretend play, making up a story, and frequent tantrums. The mother reported that Benicio had been hospitalized in the past for trying to eat a light bulb and for eating medication for horses. Benicio’s play behavior was mainly focused on lining up cars and dinosaurs and his ongoing preoccupation with geckos. Sensory issues included a diet restricted to soup and the need to remove clothing tags. The mother described him as being able to perceive feelings but being unable to relate to them. Motor issues included finger flicking and hand flapping. Autism diagnosis was confirmed with the Childhood Autism Rating Scale - High Functioning (CARS-HF) (Ji et al., 2023) with a total score of 40.

The school set up an Autism Individual Education Plan, which included supportive counseling, learning assistance and accommodations, speech and language therapy, support for pragmatic language, and support and supervision in social situations. Appropriate diagnosis led to improved self-acceptance, improved behavior at home and school, and decreased punishment at school. The patient’s insurance (Children’s Medical Security/MassHealth Limited) did not cover community-based treatments such as in-home therapy, ABA, and individual or family therapy.

This case illustrates how despite an initial presentation suggestive of cognitive challenges and ASD, diagnosis was delayed, at least in part related to issues of race, ethnicity, and language. Eleven experienced psychiatrists, psychologists, social workers, or pediatricians were involved with this child but assumed his difficulties were related to sadness and trauma. Psychological testing was delayed because he was an English language learner, and the mother was not aware of her right to request testing in the school. Autism assessment was delayed because of lack of recognition of deficits specific to autism within the broader psychiatric presentation of difficulty with attention, mood, and anxiety in both the patient and his family. Once assessed and diagnosed, services were limited to what could be provided in school. Nonetheless, appropriate diagnosis and understanding of Benicio’s challenges led to improvement at home and school and more targeted and appropriate use of services.

Discussion: Recommendations for structural competence to address intersectionality of developmental disability and race, ethnicity, and language

Patients, who are English learners and cannot be tested, can be evaluated for academic achievement and adaptive life skills in their native language. The first-line intervention for behavioral abnormalities should be an appropriate support such that the child is able to meet the expectations of the environment. Caregiver skill training and specialized schooling are essential to both the physical and the emotional health and well-being of the child. Pills do not build skills: many children with autism/IDD and multiple other challenges will need access to a team that has access to specialists that may include speech and language therapists, occupational therapists, social workers, case management, social work, or psychology. Short-term evidence-based treatments including psychoeducation, sleep hygiene, and behavioral management can be provided in any language with the use of interpreter services. Treating these problems with medication in the absence of appropriate psychosocial intervention should be recognized as a health inequity and specifically addressed at the institutional and system level.

Clinical Significance

Diversity, equity and inclusion play a prominent role in management of minoritized and autistic/IDD patients, including medication management. Structural competence to address intersectionality of autism/IDD and race, ethnicity, socioeconomic status, and language demands greater awareness among clinicians; active deprescribing; better reporting of race, ethnicity, and language; and a research agenda to provide the health equity data to allow clinicians and families to make informed choices.

Footnotes

Disclosures

M.D.W. has received consulting fees from Ironshore, Revibe, and Peri. None of the other authors has any conflicts of interest to report.

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