Autism Diagnosis Delays in Black Children: What’s Happening and What You Can Do About It

On average, Black children with autism spectrum disorder (ASD) wait three years for a diagnosis—and the wait begins when parents notice symptoms. 

An early diagnosis leads to better, targeted care for children with autism. So why aren’t Black children getting the help they need? Why aren’t parents of Black children listened to and supported? 

The answers are complex, and they’re often individualized. Each family faces unique challenges. But it’s clear that families can press their communities to do better. And when they do, children can get the help they need.

Why Are Diagnoses Delayed?

A study published in August 2020 suggests that parents of Black children suspect autism in their children and do what experts recommend: They start looking for help. But their children wait an average of three years before the official diagnosis comes. 

Researchers have known about this issue for years. In fact, one of the first studies about diagnosis delays was published back in 2002. 

But as more studies emerge and more families speak up, the reasons for delays become clearer and clearer. These are just a few of the factors that force kids in need to wait. 

1. Tradition and Bias

In groundbreaking autism research published in 1943, Leo Kanner suggested that autism symptoms were more common in children from affluent, white, educated families. This foundational research set the stage for decades of assumptions about who can (and can’t) have autism. 

Parents who bring their Black children to doctors are often told their children have something other than autism. Black children are 2.6 times less likely to get an autism diagnosis when they visit a specialist. Instead, parents are told their children have ADHD or a conduct disorder. 

2. Autism Diagnosis Method

No brain scan or blood test can diagnose autism. Instead, doctors observe behavior and rely on parent observations. 

White parents describe symptoms that fit with a classic understanding of autism. For example, white parents are 2.61 times more likely to worry over social issues, when compared to Black parents.

Researchers say non-white children without a formal autism diagnosis have fewer developmental problems than children with a clinical ASD diagnosis. It’s easy to assume these children just don’t have autism. But it could be that Black children learn to mask or hide their symptoms in formal situations like classrooms or doctor’s offices.

3. Lack of Screening in Low-Income Children 

Not all Black children come from poor families. But structural racism can force some Black people into low-paying jobs. And when that happens, children struggle. 

The American for-profit health system sets us apart. In other countries with universalized medicine, developmental disabilities like ASD are more common in low-income families. Here, diagnosis rates rise with income. 

Children of all ethnic backgrounds from low-income communities are diagnosed later than those from wealthy families. Some aren’t ever diagnosed. 

The reasons diagnosis rates are lower in low-income children vary, but a few common threads involve:

• Access. Low-income families may face long travel times to find a qualified doctor. 
• Coverage. Parents may not have insurance policies that cover specialist care. 
• Employment. Parents may be unable to take time away from work to bring a child to a medical appointment. 

4. Poor Doctor Compliance

Most families complete six or more doctor appointments to get a referral for an autism diagnostic evaluation. And 36% of Black families report a significant wait time to see a professional. 

Black families pin their hopes on an appointment they wait months to complete. And once they arrive, they’re told their children don’t have autism at all. So they find another doctor and wait again. Delays are the result. 

How Much Do Delays Hurt Children with Autism?

A late diagnosis is associated with increased parental stress. It’s hard to watch your child struggling, knowing that interventions could help. 

Therapy that begins before age four years can help a child make gains in:

• Cognition
• Language
• Adaptive behavior
• Social skills
• Daily living skills 

But a Black child with autism may miss out on these benefits due to a diagnostic delay. And researchers find that many minority children with autism have poor language, communication, and gross motor skills. If they’d gotten the help they needed, these differences might not be noticeable. 

What Parents Can Do 

White children are 30% more likely to get an autism diagnosis than Black children. This is a sad and basic fact of healthcare in the United States right now. As a parent of a Black child, it’s important to realize that bias exists. 

You can’t fix a biased healthcare system on your own. But you can advocate for your child. You can:

• Stack appointments. Recognize that you may need more than one expert to assess your child. Don’t assume that the appointment you’ve set up is the only one you will need. Make several, set a few days apart. 
• Search for trusted doctors. Connect with other Black families (more on this in a minute) and find out where they went to get help for their children. You may discover a professional in your community known for a good track record of treating Black children. 
• Arrive prepared. Document your child’s behavior clearly and scientifically. Come to your appointment with notes, photos, and videos. Ensure that your doctor looks at all of the evidence you’ve prepared. 
• Push back. Your child relies on you to get answers. If you don’t feel heard or understood, persist. Keep asking questions and discussing your concerns. Your doctor must listen to you.

Find Support 

Other people in your community are also struggling to get autism care for their children. Sharing your story and learning from other Black families could give you great ideas to help your child. 

Connect with Autism in Black to find out more about how other Black families help their children. Tap into formal coaching programs for parents and couples, or join a Facebook parenting community. 

Reach out to the Color of Autism Foundation for parent training, social skills, groups, and peer support. Most classes are held via Zoom, so you can join from anywhere. 

Reach out to us at Elemy. We believe all children deserve kind, compassionate autism care. We can help you get diagnostic help, and we offer home-based therapies for children in need. We’d love to help you. 

References

Study: Black Children’s Autism Diagnosis Typically Delayed 3 Years. (August 2020). American Academy of Pediatrics. 

Race Differences in the Age at Diagnosis Among Medicaid-Eligible Children with Autism. (December 2002). Journal of the American Academy of Child and Adolescent Psychiatry. 

Autistic Disturbances of Affective Contact. (1943). Leo Kanner. 

Disparities in Diagnoses Received Prior to a Diagnosis of Autism Spectrum Disorder. (October 2007). Journal of Autism and Developmental Disorders. 

Black Parents Underreport Autism Concerns in Their Children. (January 2018). Healio. 

Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors. (December 2019). Autism Research. 

Autism May be Under-Identified in Some Socioeconomic Groups. (October 2017). Healio. 

How to Help Low-Income Children with Autism. (January 2019). Spectrum. 

Clinical Impact of Early Diagnosis of Autism on the Prognosis and Parent-Child Relationships. (August 2017). Psychology Research and Behavior Management. 

Differences in Autism Symptoms Between Minority and Non-Minority Toddlers. (January 2012). Journal of Autism and Developmental Disorders. 
Autism’s Race Problem. (May 2016). Pacific Standard.