Are Autism Rates Really Increasing?

Several reports since 2020 have raised concerns that autism diagnosis rates are on an alarming rise. For example, NBC News highlighted a new study that said autism rates tripled among children in New Jersey and New York metropolitan area from 2000 to 2016.

Autism is a condition where people are born with brains that are different from what is typically expected (neurodivergent). The difference in the child’s brain affects how they behave and socialize. Early signs can include repetitive speech or motions and learning challenges.

While the descriptions and diagnoses of many conditions like vertigo or claustrophobia have remained constant over time, autism presents a different case. Its definition and diagnostic criteria have evolved—and continue to evolve. This ongoing evolution is one reason for the perceived increase in autism diagnoses.

How autism evolved into autism spectrum disorder

When autism was first discovered, it was termed a form of childhood schizophrenia, and the cause was blamed on cold parenting. That definition later changed to a set of developmental disorders. Today, autism is described as a spectrum with a wide degree of impairments. Each time the definition of a condition changes, the diagnosis and management follow.

For example, when autism was initially described as a disease, the focus was on finding a “cure.” However, with the shift in its definition from disease to disorder, the focus also shifted—from searching for a cure to supporting individuals in emphasizing their strengths and managing the challenges they may face due to the condition.

The redefinition of autism started in the 1987 revised “Diagnostic and Statistical Manual of Mental Disorders” (DSM-III) and was followed by the addition of diagnosis at the mild end of the spectrum. By 1994, DSM-IV was released, and it was the first time that autism was categorized as a spectrum. It was later revised in 2000. The DSM is a manual that provides a standard guide for the classification and diagnosis of mental disorders. The publication by the American Psychiatric Association allows researchers and clinicians to speak a common language.

The sudden spike in autism diagnoses in Black communities

People with mild symptoms who were not previously diagnosed are now being added to the spectrum. This is likely part of the reason why there is a spike in diagnoses. Before 2016, the number of children diagnosed with autism spectrum disorder (ASD) was higher in white children compared to Black or Hispanic children.

By 2018, the number of Black and Hispanic children identified with ASD started to climb above that of white children. The pattern was noticed in 2020 for the first time among 8-year-olds. By 2013, the CDC estimated that 3% of Black children had an autism diagnosis compared to 2% of white children.

The rising ASD diagnosis in Black communities is not necessarily an indication that there is an epidemic of some sort. Rather, it may represent an increase in awareness and better diagnostic procedures. It can also be an indication of improving health access and services in previously underserved Black communities. Some of the arguments for the spike include:

Better understanding: With better understanding, it is now understood that autism can manifest broadly as either mild or severe with unique challenges.
Consolidating diagnoses: Autism, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger’s syndrome were previously considered different diagnoses. That has now been consolidated in DSM-V.
Misdiagnosis: There is no blood test or scan for autism diagnosis. Its diagnosis is based on making judgments based on the child’s observed behavior which can lead to misdiagnosis, especially when the child is diagnosed by someone that is not informed about Black culture.

The challenges faced by Black children with ASD

The difference in intellectual disability was one of the reasons why researchers had a hard time defining ASD. Besides the increasing diagnosis of ASD among Black children, the CDC acknowledges that it is important to examine social determinants of health to see how they affect the higher disability rate recorded among Black children with autism.

According to the CDC report, Black children (8-year-old) identified with autism also had higher intellectual disability (50.8%) compared to white children (31.8%). Research has shown that Black children are often diagnosed later compared to white children—and usually take longer hospital visits to get diagnosed.

As a result, many Black children do not get the necessary support early on, which may contribute to higher intellectual disabilities. The American Academy of Pediatrics recommends the screening of children between 18 and 24 months, when symptoms usually appear. However, the average age of diagnosis in the United States is 4 years, and globally, it’s 5 years.

Being diagnosed with ASD, particularly in its more severe forms, is challenging not only for the child but also for their caregiver. The constant demands of caregiving can lead to burnout if not properly managed. Elevate Black Health has outlined steps caregivers should take to better care for their autistic children and avoid the negative impact it may have on their health. The Autism Speaks Resources Guide can help families find nearby providers offering diagnostic services.

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