Today, the Centers for Disease Control released the Autism and Developmental Disabilities Monitoring (ADDM) Network report. This report estimates how many autistic 8-year-olds there are in certain areas of the country. The report shows that better recognition of autism and continued efforts to reduce disparities in diagnosis among different groups have caused rates of diagnosis to continue to rise. This report comes at a time when the Secretary of Health and Human Services Robert F. Kennedy Jr. has portrayed the increase in the recognized number of autistic people as an “epidemic” and a “cataclysm.” This is a fundamental misrepresentation of everything we know about autism, including this report. This report is clear that the changes in diagnosis rate are explained by better access to screening and improved understanding of autism.
The report released today uses data gathered in 2022. This research reviewed records of 8-year-old children in 16 communities across the United States. The report released today shows that the rate of autism diagnosis has increased to 1 in 31 children or 3.2 percent of the children surveyed. This is an increase from earlier reports, which estimated that 1 in 36 children were diagnosed with autism.
ASAN is not surprised to see the diagnosis rate increase. We believe, as the report explains, this increase reflects better recognition and diagnosis of autism across the U.S. We know that many disparities in diagnosis have become smaller.
For the second year in a row, Non-Hispanic white children had the lowest diagnosis rate of any race or ethnicity at most sites. The report explains that a lot of researchers, doctors, and policymakers have worked hard to improve access to screening and diagnostic services for underserved groups. The increases in diagnosis for non-white groups is proof that this work is helping. The report found that there are still some disparities. Higher income is related to a higher diagnosis rate for Black, Hispanic, and Asian and Pacific Islander children, but not for white children. This shows that there is still more to be done to make sure all children have access to screening.
We still see autistic children of color are more likely to be diagnosed with intellectual disability too. The study uses IQ to diagnose intellectual disability. IQ has many flaws as a measurement. The researchers note that language and cognitive scores on an IQ test taken by an autistic person can be improved by access to early autism services. These disparities can also be explained by social determinants of health like access to services, housing, food insecurity, and more. Children with poor housing are more likely to experience lead poisoning. Children who don’t get early childhood supports can struggle to keep up with their peers. Attacks on programs that improve health equity, like the federal government firing all the experts that keep children safe from lead, or planning to eliminate the Head Start program, will make the social determinants of health worse and could expand these disparities.
Diagnosis increased for both boys and girls in the study period. Boys are usually diagnosed much more often than girls, and that is still the case, but the number of girls diagnosed is increasing. The difference in diagnosis rates between boys and girls got bigger. The size of the difference between boys and girls has gotten proportionally smaller. What does this mean? More girls than ever are getting identified as autistic, but even more boys are getting identified as autistic. But the percent increase from year to year is larger for girls than boys. This shows a lot of work has been done to make sure as many children as possible have access to screening, but more work needs to be done to make sure we can make tests that work equally well for girls and boys. ASAN worked on a study with other autistic partners to create an autism assessment for older autistic people that works better for all genders. This study was cancelled by the federal government this year before it was completed. We believe it was cancelled because the grant specifically addressed improving diagnosis rates for women and gender minorities. This would make the study one of many other research projects the federal government cancelled because they had something to do with diversity and equality. Recognizing the signs of autism in women and gender minorities remains a persistent problem and we need to keep doing work to get better at this.
In our statement about the 2023 report, we mentioned that a lot of improvements in screenings were reversed because of the COVID-19 pandemic. Fortunately, the challenges to screening and diagnosis presented by the COVID-19 pandemic were overcome partly through the use of telehealth. The use of telehealth services played a significant role in increasing early evaluation. 8.7% of children born in 2018 had a telehealth assessment in their medical records. Maintaining telehealth services is essential to reduce access barriers to screening and diagnosis.
Improvements in early identification make it even more critical that parents receive accurate, non-stigmatizing information about autism upon diagnosis. The second-highest diagnosis rate for 4-year-olds was measured in Puerto Rico. Their diagnosis rate for children who are now 8-years-old is below the average. This reflects a huge improvement in screenings in a short time. This difference is likely due to the Puerto Rico Title V Children with Special Health Care Needs Program overseen by the Health Resources Services Administration (HRSA). HRSA is another agency being dismantled by the federal government. It is unclear what will happen to these programs. It is vital for families to receive information about what types of services are available to autistic kids.
We still see differences in rates seen between different ADDM sites and the median age when children were evaluated. These differences help explain some of the still-existing disparities as well. We should expect that diagnosis rates continue to rise, especially for data collected in 2024. However, threats to programs that increase access to screening and diagnosis may decrease the diagnosis rate in future years. Government bans on work addressing equity needs threaten advancements in closing racial and gender disparities in diagnosis rates, while the restructuring of HRSA threatens access for all, especially low-income children. We will continue to advocate to address diagnostic disparities, improve access to diagnosis and support, and protect the programs and services that make this possible.