I Have A Black/Latinx/Hispanic/Indigenous Child. What Can I Do to Ensure My Child Receives A Fair Assessment And Proper Diagnosis?

Every Child Deserves Quality Care.

This is critical topic that unfortunately is almost never covered to satisfaction in formal academia and often leaves much to be desired in most training settings. That is, mental healthcare and more specifically, diagnosis and treatment, for marginalized populations. So first off, before families of color or those with limited means even walk through the door of a clinician who is able to diagnose, let’s talk about some boundaries to care they may prevent a person or family for either seeking or accessing an assessment.

Now why is this? How do the multitude of societal and logistical barriers cause this to be?Many familities are unable to afford private evaluation, which is larger systemic issue related to private insurance and now even more limited access to Medicaid. In fact, per the latest research, Latinx youth have lowest access to healthcare and insurance, with black youth being the next lowest. Also, many people experience difficulty taking off work for an appointment, a lack of resources in community/school district, and geographical barriers in terms of finding a clinical in their neighborhood or even city who is able to diagnose. Per the research and personal anecdotes, many therapy centers or services are not located or accessible to people in lower SES neighborhoods or predominantly “black neighborhoods.” Additionally, those in non-metro counties have significantly lower rates of school-based service use as well as limited transportation access to doctors and services and/or more pressing immediate economic needs. Many black people don’t trust medical doctors or medical institutions (fear/mistrust of child welfare, law enforcement, involuntary psych hold etc.). There is also limited access to clinicians/lawyers/advocates of color. So, as it stands presently, only 4% of mental health providers are black, despite black Americans being about 15% of US population.

Moreover, there are minimal established psychotherapy interventions for people of color and if they do ultimately seek support, their experience can be tarnished by clinicians who are not properly trained or relatable. There are also a lack of bilingual providers and significantly longer wait lists for those providers. Not surprisingly, this is now exacerbated by current political climate and fears of deportation etc. Additionally, often times there is limited parent psychoeducation; less knowledge about milestones, expected school achievements, signs of autism and less exposure and lower health literacy overall. Finally, research has also shown there is a lack of access to maternal mental health care, which can also affect parenting and ability to provide for a child of color with autism, including less access to therapies and early intervention. Overall, as one article states: “structural racism manifests in children’s mental health service systems via pervasive inequities including disparities in access to and quality of care, funding and insurance disparities, and disparities in pathways to care.”

Research has consistently showed that people of color are less likely to be diagnosed accurately. Black children are more likely to be classified as “intellectually disabled” or “emotionally disturbed”, despite lack of significant evidence and better accounted for by autism spectrum disorder. They are also more likely to be misdiagnosed as ODD, ADHD, IDD, or a mood disorder. It has also been found that Latinx and Hispanics often receive incorrect diagnoses because of culture and/or language gaps. Additionally, children of color were diagnosed with autism, on average, more than 3 years after parents first shared concerns with a professional, regardless of insurance status and parental education; providers were more likely to take a “wait and see” approach with children of color. Per the research, the most under-diagnosed population for autism is the Latinx community, especially for higher-functioning individuals. As a result, there has been an increase in self-dx in people of color in adulthood because of barriers to formal diagnosis.

Further, there are significant cultural variations in what constitutes mental illness and what social communication and social conventions typically look like. Procedures for screening autism may not adequately capture the experiences of parents from diverse backgrounds because they are very reliant on parent report, who often report more behavioral symptoms (sleep difficulties, aggression, language delay) vs developmental delays, resulting in focus on mental illness or learning disorder labels as opposed to consideration of a developmental disorder. Classification of mental illness is largely driven by white and upper middle class norms, despite the facts that we do not start on even playing fields biologically or environmentally. Many evaluations do not use culturally relevant activities and toys affecting validity of assessments. To further complicate things, many clinicians unfortunately can display covert racism or a lack of understanding. Per the research, many black families reported that providers dismissed their concerns and blamed the parents’ parenting for their children’s behavior, resulting in guilt/shame/self-blame. Some providers dismissed behaviors because they attributed behavior to culture or having their own expectations. And finally, there may be high rates of masking due to cultural conformity, that may affect ability to accurately assess on clinicians part.

So let’s talk about how the lived experience of autistic people of color can be especially challenging and frustrating to say the least. Many tend to experience less acceptance within their household and community in addition to less self-acceptance, and as a result have difficulty achieving goals and true potential. Per others’ narratives, Black autistics may struggle, as there is generally a strong sense of community in black and hispanic culture but they end up isolated because of reduced social awareness or communication. These individuals often feel as though they have to code switch/mask socially and racially causing increased distress and confusion for self and others and more pressure culturally to be loud, extroverted, and unserious. Physical affection and close proximity/eye contact can be part of black/hispanic culture but this often a significant struggle for autistics. Moreover, weakness and introversion is looked down upon in the black and hispanic communities.

Additionally, minorities with ASD are more likely to experience bullying, especially on the bus and during recess. They may be bullied because they are justice/rule-oriented and they may be more likely to tattle or protect others from bullying. They often feel even more isolated because they are only one of the people of color at neurodiverse-specific events, support groups, other social situations. Autistic blogs can be a helpful support for many but unfortunately there has been limited discussion or representation for those who are of color. Many reported feeling like a poster child for their minority group with autism, especially as Black and Latinx autistic people are less likely to be featured in media/tv/movies etc., The typical face of autism in the media is a “dorky white male” in brochures, TV, social media, and movies. As a result of these adversities, it has been found that there are increased rates of suicide amongst people of color with “mental disorders.” There have been increased incidences of abuse and they are less likely to be believed. Many engage in self-medicating, especially with marijuana and alcohol, as a result of increased anxiety, depression, and suicidality in black/latinx/hispanic autistics. Moreover, racism and discrimination can exacerbate anxiety, depression, and behavioral dysregulation that people of color with autism already experience, especially for those who experience Intersectionality, which is multiple marginalized identities (e.g., black, queer, woman, autistic).

In terms of the experience of these communities as a whole, it has been shown that families of color felt isolated in terms of often engaging in the fight alone, as there is often a high level of stigma, especially in boys (machismo, boys being boys, denial, pro-aggression, poor reflection on the father, strong need for discipline), as well as high levels of religious belief can interfere with traditional intervention and acceptance of diagnosis. There tends to be the greatest myths and misinformation in minority cultures. This lack of community psychoeducation regarding autism then may perpetuate stigma (e.g., church women offering to pray child’s autism away). Interestingly, there are sometimes big differences in the experience of black autistics in northern and southern regions of the US due to cultural, educational, and political differences. Additionally, per the research, some schools are quicker to place a black/hispanic autistic child on a non-diploma track or in a restrictive placement, and personally, I have observed Latina mothers being called the wrong last name, (another hispanic last name that was not theirs), poor interpretation services, and services and requests that were denied, while being provided to white families with the same general profiles.

It is imperative that we also discuss the increased safety concerns amongst this population, as the toughest and most heartbreaking outcome is critical harm or death. 50% of black disabled people are arrested by 28 years old and are more than 3 times more likely to be shot and killed by the police. Approximately 1/3 of people murdered by police officers were classified as disabled. Mental health crisis response often involves law enforcement and school enforcement officers, which can lead to increased racial trauma/criminalization. In fact, certain areas in the US with higher violence/ or termed “black neighborhoods” require a police escort for every ambulance call which can result in additional conflict. Autistic people of color are at such high risk as sometimes they may show unintentional bluntness toward authority, which can be seen as aggression or result in the person being ignored when they really need help and support from others. Many autistic traits are also perceived as odd, avoidant, or aggressive (self-stimulatory behaviors, echolalia, poor eye contact). Non-speaking autistic black men especially are at very high risk of being misunderstood and/or experiencing violence against them. It is extremely challenging and scary for the parents of black, latinx, and hispanic autistic children to teach nuances of behavior when in presence of law enforcement/authority. Autistic people of color are 5 times more likely to be detained under “Mental Health Act” than white in the UK. Doctors and law enforcement can use mental illness/history of aggression or houselessness as excuse to incarcerate or place in involuntary psychiatric institution. In fact, Black autistics are more likely to be houseless as compared to white autistics. Additionally, there are reportedly a high numbers of black autistics in jail because they never received a proper diagnosis and/or supports.

So what are some recommendations in terms of providing effective, equal, accurate, and supportive assessment and intervention for children of color? In terms of neuropsychological field specifically, relying upon qualitative vs. quantitative approaches have been generally more accurate for families with children of color. Sometimes, because of the aforementioned barriers to getting an assessment, it might be beneficial not to wait for formal diagnosis to begin services. Providers and clinicians need to do a better job at listening to and understanding parents and show you both are informed and genuinely care. Using non-stigmatizing language and communicating in terms that everyone can understand and relate to is essential. We need access to providers who can speak the family’s language of origin ideally or ensure validity of assessment as well as improved Spanish-language ASD measures; though there are some, more available in Spanish are required. In terms of therapy, multisystemic therapy, peer resilient treatment, and CBT have been shown to be most effective for black and hispanic families. As a field, we need to stop treating diversity research and impact as a special class, special interest, or bonus material when its critical to the well-being of society as a whole.

In terms of community-based changes, we definitely need more education in the community, including within law enforcement and ERs, where people often misinterpret situations and behaviors. We need to provide more education to parents about what to say, do, and avoid, when to seek help and who from (e.g., milestone checklists, variability in presentations, presentation of autism in the black community). It also helps to follow and support black, hispanic, latinx, and indigenous autism activists and clinicians on social media to engage in open and honest dialogue with white and non-white clinicians, advocates, researchers, and parents.

And finally, and perhaps most importantly, we need some significant changes in policy and systemic bias and barriers to mental health care. We need to identify empirically-based interventions that address racial stress and trauma and promote racial/ethnic socialization, and build these into existing training initiatives, expand training and credentialing of the lay health workforce, increase diversity of staff, and improve access to services. We need to increase grants for researchers and providers of color and expand federal support of research on effectiveness and implementation of evidence-based interventions with racially/ethnically minority youth. We would also benefit from expanding training addressing racial bias and interpersonal racial discrimination into standard workforce development, especially for those in medical or law enforcement professions.

There have been several attempts and official legal and political actions, some of which have been successful, and some that have not. The Strong African American Families Program through the University of Georgia Center for Family Research began in 2002, and is program for youth ages 10-14 and their caregivers to prevent substance abuse and other risky behaviors by increasing positive family interventions, focused on encouraging racial pride and addressing racial discrimination, enhancing primary caregivers efforts to help youth reach goals and preparer teen years, and has been labeled as “well supported by research evidence.” The California Reducing Disparities Project, which launched in 2009, prioritized local and community-driven knowledge by engaging service agencies representing minority populations to develop programs in order to conduct both statewide and local evaluations, reduce disparities and barriers to quality health care, improve social and environmental conditions that hamper health, and address a lack of data collection for underserved and inappropriately served populations. This program also provides culturally and linguistically appropriate services, resource guides, adequate screening and diagnosing, translation services, transportation services, culturally competent training for law enforcement, health services in prison to rehabilitate, funding for culturally specific-research and intervention, and proactive services, especially in rural communities.

In 2020, congress declared “racism as a public health crisis” and made a “commitment to dismantling system practices and politics that perpetuate racism” and “reforming policies that have led to poor outcomes for communities of color.” As a result, the Black Youth Suicide and Mental Health Emergency Taskforce was created to address the significant increase in suicide rate in black youth, especially within males of 5 to 11 years, as black youth are significantly less likely to receive care for depression (high comorbidity with ASD), and high stigma for any neurodivergence. In their report from 2020 it was recommended that there be increased funding for research on black mental health by black researchers, evidence-based practices for black youth, certification for clinicians black mental health training, state and local task forces, increased research for black youth mental health, evidence-based interventions and best practices for all who work with black youth; including identifying risk factors, increasing mental health utilization, identifying cultural barriers to treatment, increased identification of at-risk youth in schools, and development of culturally-appropriate screening tools.

Following the information and recommendations put forth by the taskforce, The STRONG support for children act of 2021 was proposed. This would reportedly address childhood trauma via grants to health departments, supporting communities in addressing the root causes of childhood trauma through reparative, healing-centered, neighborhood-based, gender-responsive, culturally-specific, and trauma-informed approaches that recognize the role that systemic racism and inequities have played for generations in addition to promoting funding and support (e.g., childcare, transportation, telehealth services, provider training, housing support, substance use disorder prevention, transition services for youth in foster care, and support for LGBTQIA+ youth). Despite these strong recommendations, the Pursuing Equity in Mental Health Act on 2021, which continues to sit in congress, was proposed to address mental health issues for youth of color, including conducting research in respect to mental health dispraise in racial and ethnic minority groups including outcome studies, an assessment of information on the impact of exposure to community violence, adverse childhood experiences, structural bias, and other psychological traumas on mental health outcomes in minority groups, as well as recommendations to remedy the research gap allowing input into educational needs and mental health disparities. Moreover, unfortunately, the Behavioral Health Coordination and Communication Act, which was intended to promote racial and ethnic diversity in the mental health workforce, access to mental health services, and identification of best practices for minority populations was labeled “dead” in January of 2023. However, on a positive note, Children’s Mental Health Initiative of 2023 demonstrated an ability to reach and engage youth of color in system of care services including wrap-around planning, intensive care coordination, family and youth peer supports, and flexible funding, expand coverage and increase access to services through federal funding. So all in all, there remains significant room for improvement, and much of the outcomes depend on support from those in power, though those who work directly with families also hold much significance in their ability to make a change and forming continued connections between communities on both personal and professional levels.