The Daily Glow: An E-space for Healing and Growth

Neurodivergence: Understanding Autism in Black Girls and Women

Why are black girls and women under-diagnosed with ASD?  Autism Spectrum Disorder (ASD) is often under-diagnosed or left undiagnosed within many Blacks girls and women. The article, Black and Latino Children Are Often Overlooked When It Comes to Autism, identifies that many black and brown families lack the language to adequately express the needs and observed behaviors of their children. Rentz states that, "African-American families tend to arrive at the center with lots of documentation detailing behavior issues from their child's school or social services. With all those official papers sitting in front of them, it's much easier for a counselor to think "behavior disease" rather than 'autism,' says Kelly" (Rentz, 2018). Black children are scrutinized for their behavior and their diagnoses are closely related to misinterpreted behaviors and implicit biases.  Let's talk numbers and ASD? Did you know that In 2020, 1 in 36 children aged 8, or about 4 percent of boys and 1 percent of girls, were estimated to have autism, the first time the prevalence for girls has exceeded 1 percent, according to data from the Autism Spectrum Diagnosis Disabilities Monitoring Network The prevalence of autism among White children was lower than among other racial and ethnic groups How Black autistic women and girls are excluded from conversations on resources and research, spotlights Bria Herbert's experience and her journey to obtaining an ASD diagnosis. Herbert was the eldest of four children and shares that these roles "lent a uniquely weighted mantle to Herbert growing up, including more responsibility, higher standards and expectations of success. Academically, it was a rarity for Hubert to not excel." Failure was not an option, and as a result her perfectionist and tailored approach at life, granted her the tools to excel academically, but Herbert identified areas of great deficits, but failed to pinpoint the cause. While many noted that "nothing was wrong with her something was different enough that it caught the attention of her peers and family." Many Black people acknowledge identifiable differences within their social networks, without explicitly naming the "thing." Tik Toker Meccavelli, provides her take on the Autism within the black community, where she utilizes Uncle Pete from Soul Food as a reference.  "You know he's special." "They're just quiet, and like to keep to themselves." "They're a thinker, they don't say much." As discussed previously, Black people are able to identify symptoms and behaviors, but lack the language and knowledge, but again, Black Girls, Boys, Men, and Women are now starting to become included in conversations and research surrounding ASD and neurodivergence.  Herbert mentions that “other people definitely noticed, but just liked me anyway,” Herbert considered herself :one of the lucky ones" and thanked God that she was a cute child. Which brings up a larger conversation about how pretty privilege and physical presentation contributes to how we treat and interact with those navigating disabilities and disorders.  Another statistical fact related to ASD is that 46 percent of autistic children face bullying, according to a 2012 study in the Archives of Pediatrics & Adolescent Medicine. How does Autism Spectrum Disorder (ASD) shows up in Black girls? Traits of autism in Black girls: Self-sufficiency Reclusion  Display of Maturity and independence early  Routine driven  Attitude or oppositional defiance  Repetitive behaviors  Overly clean and orderly  Hyperlexia  and more... Young black girls that are often misdiagnosed or under-diagnosed, are often considered perfect and easy children because of their ability to entertain themselves, mature, and orderly disposition. These same children, if lucky, eventually learn to adapt to the outer world and mask their behaviors and quirks. Many black girls go into adulthood, undiagnosed constantly feeling out of place and different from their peers.   Barries to obtaining an ASD diagnosis and why it's important:  Embracing difference is critical in fostering acceptance and the welcoming of Autism and neurodivergence within society. Young White boys serve as the comparative measure when exploring research and ideals surrounding ASD. This practice negates the differences and presentations amongst demographics and comparing black girls with autism to white boys with autism is not an effective measure. It's important to identify key experiential aspects of the autistic black girl experience from an intersectional lens to further develop research and practices.  Barriers to ASD diagnosis and treatment:  Cost  Language  Bias Limited knowledge and resources  While most insurance companies cover testing, related to early intervention and support for children, adults are expected to pay thousands of dollars in assessment fees or spend years waiting for clinical trials and research waitlists that usually offer support at a discounted rate, rather than free. Autism-related testing fees rand from $500 to $5,000, many assessment offers for adults are not covered by insurance.  Amanda Seales, shared within her Club Shay Shay interview that she has self-diagnosed with the ASD diagnosis. Many people took to Tik Tok and Twitter (X), expressing that her ASD diagnosis is a crock and without professional backing she's using the diagnosis to excuse what many interpret as oppositional and combative behavior. Dr. Chanda, a licensed Clinical Psychologist, backed Amanda and further supported the need for accessible assessments and shared that she is not opposed to people engaging in research to understand inquisitions surrounding traits and behaviors closely related to a diagnosis or disorder. Dr. Chanda discusses the Amanda Seales situation employing her expertise and opinion to provide context to the full interview and her thoughts on self-diagnosing.  Through Warda Farahm, a speech and language therapist, insight into the power of a diagnosis in the context of family is noteworthy. Wanda shares in Autism in Black Girls  that "despite being a Speech and Language Therapist who has worked with many autistic children over the years and having my own unique lived experience,  medical professionals I have come across have told me that I can not be autistic because I have multiple degrees, run a business, have a big social circle. I am successful by the arbitrary measures that our society imposes on us but to achieve it all I have worn many masks, so I can master my environment." Farahm sought assessments for her children and in seeking out professional assistance, she received a diagnosis for herself. Professionals and many others prior to her decison, assumed that because She was high-achieving and successful, an ASD diagnosis was impossible. Black women are expected to show up as "all of the things", but mentally ill or suffering from a disorder are not on the list. There is power is discovering and obtaining the knowledge and information to name the "thing." Autism and neurdivergence are not limitations, but rather exemplify the power of difference. Herbet, Seales, and Farahm are sparking the a larger and necessary conversation that Black Girls do have Autism, and Autism in Black Girls shows up differently and deserves the necessary attention.        Citation: Rentz, C. (2018). Black And Latino Children Are Often Overlooked When It Comes To Autism. NPR.org. https://www.npr.org/sections/health-shots/2018/03/19/587249339/black-and-latino-children-are-often-overlooked-when-it-comes-to-autism Sterzing PR, Shattuck PT, Narendorf SC, Wagner M, Cooper BP. Bullying Involvement and Autism Spectrum Disorders: Prevalence and Correlates of Bullying Involvement Among Adolescents With an Autism Spectrum Disorder. Arch Pediatr Adolesc Med. 2012;166(11):1058–1064. doi:10.1001/archpediatrics.2012.790 Additional Reading: Gilyard, K. (2023, June 7). How Black autistic women and girls are excluded from conversations on resources and research. The 19th. https://19thnews.org/2023/06/black-women-and-girls-autism-data/ Lovelace, T. S., Comis, M. P., Tabb, J. M., & Oshokoya, O. E. (2021). Missing from the Narrative: A Seven-Decade Scoping Review of the Inclusion of Black Autistic Women and Girls in Autism Research. Behavior Analysis in Practice, 15(4). https://doi.org/10.1007/s40617-021-00654-9 30nine. (2022, December 5). Autism in Black girls - Autistic Girls Network. Autistic Girls Network. https://autisticgirlsnetwork.org/autism-in-black-girls/ Sterzing, P. R., Shattuck, P. T., Narendorf, S. C., Wagner, M., & Cooper, B. P. (2012). Bullying Involvement and Autism Spectrum Disorders. Archives of Pediatrics & Adolescent Medicine, 166(11), 1058. https://doi.org/10.1001/archpediatrics.2012.790 Autism Speaks. (2022). Autism diagnostic criteria: DSM-5 | Autism speaks. Autism Speaks. https://www.autismspeaks.org/autism-diagnostic-criteria-dsm-5           Disclaimer: The contents of Sincerely Sanguine's (SS) Site, such as text, graphics, images, and other material contained on the SS Site (“Content”) are for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on the SS Site.   If you think you may have a medical emergency, call your doctor or 911 or local emergency number immediately. SS does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Site. 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