Spectrum & Soul: Raising Neurodivergent Children with Culture, Care, and Clarity

By Alisha Simpson-Watt, LCSW, BCBA, LBA

Daisha is a proud first-time parent of African American heritage. From the moment her daughter Lani was born, she sensed something felt different.

As a baby, Lani was difficult to soothe and struggled with sleep. Daisha also noticed Lani did not consistently make eye contact, did not smile in response to her mother’s interactions, and was unable to sit up without adult support. As time went on, Lani continued to fall behind on developmental milestones such as crawling, talking, and walking.

Daisha also observed a concerning regression in Lani’s development. Lani initially babbled and even said “mama,” but over time, she stopped using words altogether at the age of 2.

When Daisha shared her concerns with her sister and mother, they reassured her not to worry. They told her that Lani would “grow out of it”, discouraged her from labeling the concerns as a disability, and encouraged her to dismiss her instincts. Although Daisha tried to follow her family’s advice, she continued to feel that something was not right.

Eventually, Daisha decided to raise her concerns during Lani’s routine three-year well-child visit.

Seeking Answers

At the appointment, Daisha shared her observations with the pediatrician, who asked several developmental screening questions. Initially, Daisha was advised to follow a “wait and see” approach to determine if Lani would catch up over time.

However, Daisha’s instincts told her otherwise. She sought a second opinion from another pediatrician.

That decision proved to be important in getting answers.

The second provider confirmed that Lani was experiencing developmental delays and referred her to an early intervention program for a comprehensive evaluation. Through that process, Daisha later learned that Lani showed signs consistent with Autism Spectrum Disorder (ASD).

“…Black parents were less likely than White parents to report certain Autism-specific concerns, even when children exhibited more severe social symptoms.”

Understanding Developmental Milestones

Recognizing when “something feels different” often begins with understanding age-appropriate developmental milestones. These milestones are skills and behaviors children are expected to achieve within specific age ranges across key areas, including:

• Language and communication 
• Gross and fine motor skills 
• Social and emotional development 
• Cognitive skills 

The Centers for Disease Control and Prevention (CDC) encourages parents to monitor developmental milestones early using tools such as milestone checklists and mobile tracking apps. These tools were developed to help parents and caregivers better understand child development, recognize milestones their child should be reaching, and know what steps to take if concerns arise.

The Importance of Early Action

Research shows that Black children often experience delays in receiving an Autism diagnosis and accessing early intervention services. In many cases, Black children may experience delays of several years between the time parents first raise developmental concerns and the time a diagnosis is received, delaying access to critical support during an important period of development.

According to Constantino et al. (2020), Black children are also more likely to experience:

• Higher rates of co-occurring intellectual disability 
• Increased likelihood of misdiagnosis 
• Delays in comprehensive diagnostic evaluation 

In fact, 39% of children with Autism Spectrum Disorder did not receive a comprehensive evaluation until after 48 months of age, despite 85% of parents reporting developmental concerns before 36 months (Constantino et al., 2020).

Listening to Parents’ Concerns

Additional research highlights differences in how parental concerns are reported and interpreted. Donohue et al. (2019) found that Black parents were less likely than White parents to report certain Autism-specific concerns, even when children exhibited more severe social symptoms.

Importantly, these differences were not explained by differences in symptom severity or cognitive ability. The findings emphasize that concerns may be influenced by communication gaps, systemic bias, or differing expectations, not by the absence of developmental differences.

Breaking the Silence and Seeking Support

It is essential for parents, caregivers, providers, and community members to educate themselves on early signs of Autism and normalize conversations around developmental differences. Many families hesitate to seek support due to fear, stigma, or concern about judgment.

If concerns are minimized or a pediatrician recommends a “wait and see” approach, families have other options. Parents and Caregivers can:

• Contact their state’s Early Intervention (Birth to Three) program if their child is between the ages of 0-3.
• Request an evaluation from a qualified developmental specialist 
• Reach out to their insurance provider for in-network diagnostic services 
• Use local and national directories, such as the Autism Speaks Resource Guide, to locate providers and resources 

Final Thoughts

Daisha’s story is a reminder that parents are often the first to notice when something feels different. While reassurance from others can be comforting, persistent concerns deserve attention, validation, and timely evaluation.

Trusting your instincts, knowing the signs, and acting early can make a lasting difference in a child’s developmental journey.

References

Centers for Disease Control and Prevention. (n.d.). Developmental milestones: Learn the signs. Act early. https://www.cdc.gov/act-early/milestones-app/index.html

Child Mind Institute. (n.d.). Why do Black children with autism get diagnosed late? https://childmind.org/article/why-do-black-children-with-autism-get-diagnosed-late/

Constantino, J. N., Abbacchi, A. M., Saulnier, C., Klaiman, C., Mandell, D. S., Zhang, Y., Hawks, Z., Bates, J., Klin, A., Shattuck, P., Molholm, S., Fitzgerald, R., Roux, A., Lowe, J. K., & Geschwind, D. H. (2020). Timing of the diagnosis of autism in African American children. Pediatrics, 146(3), e20193629. https://doi.org/10.1542/peds.2019-3629

Donohue, M. R., Childs, A. W., Richards, M., & Robins, D. L. (2019). Race influences parent report of concerns about symptoms of autism spectrum disorder. Autism, 23(1), 100–111. https://doi.org/10.1177/1362361317722030

Autism Speaks. (n.d.). Resource guide. https://www.autismspeaks.org/resource-guide