Study on Medicaid-Enrolled Adults Sheds Light on the Hidden Struggles of Neurodivergent Black Women

Attention-Deficit/Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) have long been viewed through a childhood lens, often framed around how they present in young, white boys. But for many African American women, these conditions go unrecognized until much later in life—if they’re recognized at all.

A groundbreaking study of over 3.5 million Medicaid-enrolled adults is helping to change that narrative.

What the Study Found

Published in JAMA Network Open, the study found that autistic adults are significantly more likely to also have ADHD compared to the general population. Among autistic adults with intellectual disabilities, nearly 40% had ADHD. Among those without intellectual disabilities, 27% had both conditions.

Compare that to the general adult population—only 2.7% had ADHD.

But the story doesn’t end there. Adults with both autism and ADHD were more likely to suffer from:

• Substance use disorders
• Cardiovascular disease
• Injuries and hospitalizations

For instance, 13.2% of autistic adults with ADHD had a substance use disorder, compared to 5.7% of those with autism alone.

Why This Matters for Black Women

For Black women, these findings are even more critical.

Historically, African American women have been underdiagnosed and misdiagnosed when it comes to mental health and neurodevelopmental disorders. The “strong Black woman” stereotype often forces us to suppress our symptoms, push through burnout, and suffer in silence.

Common ADHD or autism symptoms in Black women are frequently misinterpreted as:

• Being moody or emotional
• Being inattentive or lazy
• Struggling with anxiety or depression (without deeper investigation)

This leads to a dangerous cycle of undiagnosed conditions, untreated symptoms, and worsening health outcomes.

Are You Missing the Signs?

If you’ve always felt different, overwhelmed, or constantly in “survival mode,” you’re not alone. Signs of ADHD or autism in adult women—especially Black women—can include:

• Difficulty focusing or following through on tasks
• Sensory sensitivities (to sound, light, textures)
• Social exhaustion or awkwardness
• Emotional dysregulation
• Chronic fatigue or burnout
• Trouble managing time or routines

These aren’t just quirks—they could be symptoms of a deeper neurological pattern that deserves recognition and support.

Treatment Can Change Lives

The study also showed promising results for those who received ADHD medication. Autistic adults who took ADHD medications had:

• Fewer cardiovascular issues
• Fewer injury-related visits

While more research is needed, this suggests that early intervention and proper treatment can reduce health risks and improve quality of life.

Moving Forward with Awareness

Healthcare providers need to do better, and we need to demand better.

That starts with:

• Culturally competent care
• Training providers to recognize neurodivergence in diverse populations
• Amplifying the voices of Black women living with these conditions

For Black women navigating these diagnoses in adulthood, community support, advocacy, and access to knowledgeable professionals are key to healing.

Self-Advocacy: Reclaiming Power in a System Not Built for Us

For many Black women, self-advocacy is not a luxury—it’s survival. Research consistently shows that racial bias, gendered stereotypes, and cultural misperceptions in healthcare contribute to delayed or missed diagnoses of neurodevelopmental disorders such as ADHD and autism among African American women (Beasley et al., 2022; Jackson & Jones, 2023).

Learning how to navigate these systemic barriers through intentional self-advocacy can transform not only access to care but also long-term health outcomes.

1. Start with Self-Awareness and Documentation
Self-advocacy begins with understanding your own patterns, challenges, and strengths. Keeping a personal health journal that documents symptoms, sensory triggers, emotional responses, and daily challenges provides tangible evidence to share with clinicians (American Psychological Association [APA], 2023). This helps shift conversations from subjective impressions to observable data—reducing bias and improving diagnostic accuracy.

2. Build a Knowledge Base and Use Your Voice
Knowledge dismantles invisibility. Educating yourself about adult ADHD and autism—especially how they present in women and people of color—can help you challenge dismissive or inaccurate assessments (Crenshaw et al., 2024). Prepare specific questions before appointments, clarify what assessments are being used, and ask providers to explain their reasoning. Research suggests that patients who use assertive communication strategies—such as stating concerns clearly, requesting explanations, and confirming next steps—receive more thorough evaluations and appropriate follow-up care (Thornton et al., 2021).

3. Leverage Support Networks and Peer Communities
Support networks play a critical role in reducing isolation and building advocacy confidence. Online and local peer communities of Black neurodivergent women provide shared understanding and practical strategies for navigating healthcare and workplace challenges (Grant, 2023). Peer mentorship programs have also been shown to increase treatment adherence and self-efficacy among adults with ADHD and autism (Shaywitz et al., 2023).

4. Demand Culturally Responsive and Intersectional Care
Black women often face dual marginalization at the intersections of race and gender. Advocacy, therefore, requires demanding culturally responsive care that acknowledges lived experiences rather than pathologizing them (Wright & Brown, 2022). Asking providers about their experience with adult neurodiversity in diverse populations, requesting inclusive assessment tools, and bringing an advocate or ally to appointments are all legitimate forms of self-advocacy.

5. Engage in Restorative Practices and Self-Compassion
Advocating for yourself can be emotionally draining, especially when encountering systemic barriers. Practicing self-compassion and mindfulness can improve resilience and prevent advocacy fatigue. Studies show that mindfulness-based interventions can reduce perceived discrimination stress and increase self-efficacy among women of color with chronic conditions (Pieterse et al., 2023). Rest and restoration are not signs of weakness—they’re the roots of sustainability.

The Bottom Line
Self-advocacy is both an act of healing and resistance. It is how we rewrite a system that has too often written us out. Understanding your worth, naming your needs, and insisting on equitable care are not just personal victories—they’re collective acts of liberation.

Final Thoughts

You are not invisible. You are not too late. And you are not alone.

If you or a loved one suspects ADHD or autism, speak to a provider who understands adult diagnosis and cultural barriers. Understanding your brain isn’t a weakness. It’s power.

Let’s continue to unmask the truth together.

References

American Psychological Association. (2023). Strategies for patient self-advocacy in health care settings. APA Press.

Beasley, C., Morgan, L., & Roberts, T. (2022). Racial and gender disparities in adult ADHD and autism diagnoses: A systematic review. Journal of Racial and Ethnic Health Disparities, 9(6), 2314–2326. https://doi.org/10.1007/s40615-022-01210-9

Crenshaw, K., Davis, M., & Hall, N. (2024). Intersectional invisibility and the adult diagnosis gap among Black women with neurodevelopmental disorders. Women’s Health Issues, 34(2), 157–165. https://doi.org/10.1016/j.whi.2024.01.004

Grant, R. (2023). Building community resilience: Peer-led interventions for neurodivergent women of color. Social Work in Mental Health, 21(4), 289–303. https://doi.org/10.1080/15332985.2023.2184527

Jackson, D., & Jones, A. (2023). The hidden faces of neurodiversity: Diagnostic barriers among African American women. American Journal of Psychiatry, 180(7), 556–568. https://doi.org/10.1176/appi.ajp.2023.22090987

Pieterse, A. L., Neville, H. A., & Carter, R. T. (2023). Mindfulness, racial stress, and psychological well-being among women of color: A meta-analytic review. Cultural Diversity and Ethnic Minority Psychology, 29(1), 14–29. https://doi.org/10.1037/cdp0000552

Shaywitz, J., Ahmed, R., & Green, K. (2023). The impact of peer mentoring on self-advocacy and treatment adherence in adults with ADHD and ASD. Psychiatric Services, 74(5), 412–420. https://doi.org/10.1176/appi.ps.202200209

Thornton, R. L., Powe, N. R., & Hill-Briggs, F. (2021). Empowering patient voice: The role of communication in reducing racial disparities in healthcare. Patient Education and Counseling, 104(2), 342–349. https://doi.org/10.1016/j.pec.2020.07.013

Wright, L., & Brown, E. (2022). Cultural humility in neuropsychological assessment: Addressing diagnostic bias in marginalized populations. Clinical Neuropsychologist, 36(8), 1871–1885. https://doi.org/10.1080/13854046.2021.2022974