Many individuals diagnosed with an autism spectrum disorder (ASD) feel pressured to conform to social standards that conflict with their natural processing. Individuals with ASD often need additional help to develop a plan that suits their way of thinking and functioning. Unfortunately, stigma associated with mental health conditions can complicate the development of a secure and healthy identity. Uninterrupted development can be a greater struggle for members of the Black community. Dual experiences as neurodiverse individuals and as members of a targeted minority group can disrupt access to quality health care and jeopardize early life development. To protect or rebuild the identity of patients with Autism, particularly those who identify as Black, an intersectional approach to understanding patients can lead to more successful treatment plans.
Communication with Health Care Professionals
Healthcare professionals whose social or economic backgrounds differ from their patients may lack empathy or understanding of their patient’s background. They may miss out on important details due to a discrepancy in communication styles and dismiss a patient’s legitimate concerns. Experts call for a more intersectional approach to understanding challenges experienced by Black youth and their families. First, non-black health care providers must recognize the impact of systemic racism on the Black community. Ideally, a grasp of this knowledge encourages empathy and reduces chances of discrimination during treatment. Until recently, many minority children were misdiagnosed or not diagnosed until they reached adulthood. With a shortened timeline for treatment and self-discovery, individuals experience added pressure to catch up on life and skills in their late teens and adulthoods. Improving relationships and trust between patients, their families, and health care providers will improve the chances of getting an autistic individual back on schedule mentally and socially.
Unfair Assessments of Behavior
The causes of ASD and Autism are not easy to specify. Institutions may type younger Black children with behavior differences as disruptive or aggressive. For example, if undiagnosed children are reported to have behavioral problems at school, healthcare professionals may focus their attention on the wrong set of symptoms. Depending on the case, it could take weeks, months, or longer for Autism to be considered as a contributing factor. The delay robs the patients of valuable time they would need to learn skills and techniques to navigate their world and circumstances.
Further barriers for families impacted by autism and ASD include suboptimal living arrangements and financial instability.
Negative environments cause undue stress for caregivers and their dependents. Poor housing can lead to complications in physical health and comorbid conditions such as anxiety or depression. Those who identify as Black may also face microaggressions and discrimination in their neighborhoods, schools, or places of work. The energy needed to navigate these hurdles may contribute to mental exhaustion and fatigue. Caregivers, especially those responsible for younger children, can experience levels of anxiety that interfere with their own mental health and support roles.
Poor funding for Autism treatments is another barrier to educating and reaching patients. Programs for ASD and Autism are not always accessible or easy to find in low-income or traditionally minority communities. Families and individuals impacted by ASD and Autism may struggle to find affordable programs tailored to their needs. In addition to the costs of treatment, they may face stressors such as the cost of transportation, childcare for other dependents, and the fear of losing key support resources. Researchers have found that caregivers make difficult decisions such as choosing to remain in difficult housing situations to maintain access to nurses, local treatment centers, and other necessities. Barriers to Social Support ASD or Autism is a difference in mental processing. A strong support network reduces feelings of alienation experienced by many patients and caregivers. To be normalized in a community is an important step toward reinforcing safety and stability for autistic individuals and their families.
Caregivers need emotional support from their communities. Within the household, duties should be split evenly between parents or guardians. This avoids placing unnecessary pressure onto a single individual and can strengthen relationships during trying times. Single parents often rely on neighbors or relatives who can provide additional childcare or volunteer time and resources for doctor visits. Unfortunately, not all communities embrace the disability and mental health movements. Stigma still exists around physical and mental disabilities. Parents have reported navigating the discrepancies between their children’s lived experience and the perception and treatment they receive from other adults. Suggestions of physical discipline or jokes about a child’s future can reduce trust in immediate social networks. Caregivers are looking to form connections based in trust and support. Many would rather loose a relationship that would endanger their child or dependent than run the risk of unnecessary trauma. Online support groups, local meet ups, and neighborhood services (i.e. child-sitters, nurses) become their lifelines.
Safe engagement assumes that each member of a support group receives attention and respect. This is not always true for Black caregivers, many of whom may be single mothers or shouldering house duties alone. Administrators of online can overlook participants with whom they share no immediate connection. More often than not, this leads parents seeking help to feel invisible or helpless to receive resources. Online support groups, while more accessible, can exacerbate the issue of social cliques. Parents of Black children may find questions surrounding diverse treatment options have never been considered or are considered negligible in predominantly white spaces. Efforts to create inclusive support groups and clinics seek to give power and agency back to Black families.
An Expert’s Perspective: Meet Kameko McGuire, Psychiatric Nurse
Practitioner An increase of mental health professionals, researchers, and advocates from diverse backgrounds has seen an increase in platforms geared toward helping parents and children of the Black community. One such platform is New Hope, whose mission is to help individuals gain better access to treatment for their Autism. Based in Florida, the clinic’s founder has a clear idea of the ways New Hope can help change the reality for families who need clear support. Kameko McGuire, the company’s founder, is a Nurse Practitioner specializing in Family and Psychiatric and Mental Health.
What drew you to this work?
“Honestly, I was certified in family practice first. I noticed that the patient load for mental health in that setting was increasing and needed to have more knowledge to better serve my patients. So, I returned to school to get certified as a psychiatric mental health nurse practitioner to better serve that population.”
How does your current position at New Hope position you for advocacy and/or professional work in your communities?
“At my current position as the CEO, Founder of New Hope Mental Health and Wellness, I have been able to support causes in the community close to my heart related to decreasing the stigma associated with mental health care. I work to make sure my community knows that at New Hope they are treated like an individual and not a number.”
Has telemedicine improved the ability to reach more patients? If yes, how?
“Absolutely, it provides a convenient way for patients to get the care they need with privacy and decreases barriers to health care that having to go into the office can provide. Telemedicine allows providers to see patients potentially hour away, possibly in areas that are are remote or rural with limited to no providers.”
What are some ways research for autism in African American or marginalized communities can be improved?
“This can be improved by providing more education to the African American and other marginalized communities so they can participate in clinical trials related to autism research. Overcoming past misuse of minorities in clinical studies and mistrust of the health care system has hindered participation by marginalized groups.”
Do you think centering the social and economic background of your patients improves their responses to treatment?
“It can. It is not always a factor. Building trust, understanding their struggles, and being receptive to their point of view is important.”
Have you met resistance?
“Yes. I have met resistance, and I understand that completely. I am not one to push anyone one way or the other related to treatment. I provide options and education then allow them to make their decision. I work as a team with the patients and their families so they have buy-in when it comes to their treatment plan.”
From a physician’s perspective, what are the most important issues for caregivers and parents of people with autism, in terms of advocacy and support?
“You have to be your child’s advocate. Ask all the questions and seek answers and services. Don’t be ashamed. This is a condition that can be helped with treatment and early intervention. Get them tested. Get them treated, and find the right provider for your situation.”
What are some of the challenges and solutions you’ve seen in building inclusive communities for adults diagnosed with autism or Aspergers’?
“Some of the challenges would relate to leaving home, being in relationships, seeking care, higher education, and being in the workforce. This population can often feel alone or isolated. Education and decreasing stigma related to mental health and autism has helped to make the conversation more frontline for those struggling. This provides validation and community for a population that did not have it before.”
Can you share a breakthrough or experience that made you, as a physician, optimistic for progress in this field?
“I would say it is just the overall increase in education and awareness associated with mental health care as a whole. It’s making room for people that need help but may not have felt comfortable doing so.”
Do you have any additional comments or tips?
“Never underestimate the value of early intervention. If you have concerns about your child’s behavior or development, seek help. Don’t wait. The earlier they are treated the better chances they have of living a normal and healthy life.”
References and Further Reading
Dababnah, S., Kim, I., & Shaia, W. (2022). ‘I am so fearful for him’: a mixed-methods exploration of stress among caregivers of Black children with autism. International Journal of Developmental Disabilities, 68(5), 658–670. https://doi.org/10.1080/20473869.2020.1870418
Gomez, J. M. (2015). Microaggressions and the Enduring Mental Health Disparity: Black Americans at Risk for Institutional Betrayal. Journal of Black Psychology, 41 (2), 121–143. https://doi.org/10.1177/0095798413514608
Gulati, S., Hameed, B., Olusanya, B. O., & Newton, C. R. (2023). Neurodiversity and humanism in autism: An LMIC health care setting perspective. Autism, 27(5), 1173–1176. https://doi.org/10.1177/13623613231181477
Lanier, Y., Sommers, M. S., Fletcher, J., Sutton, M. Y., & Roberts, D. D. (2017). Examining Racial Discrimination Frequency, Racial Discrimination Stress, and Psychological Well- Being Among Black Early Adolescents. Journal of Black Psychology, 43(3), 219–229. https://doi.org/10.1177/0095798416638189
Lovelace, T. S., Comis, M., Tabb, J., & Oshokoya, O. (2021). Missing from the Narrative: A Seven-Decade Scoping Review of the Inclusion of Black Autistic Women and Girls in Autism Research. Behav Anal Pract., 15(4), 1093–1105. https://doi.org/10.1007/s40617-021-00654-9