On April 15, the Centers for Disease Control and Prevention 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 on Tuesday uses data gathered in 2022. This research reviewed records of 8-year-old children in 16 communities across the United States. The report released on Tuesday 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.

UPDATE:

On the morning of April 16th, Secretary Kennedy held a press conference in response to the ADDM report.  This press conference followed a statement published through the Department of Health and Human Services (HHS) on the day of the ADDM release.  In both his statement and his press conference, Kennedy repeated false claims that autism was a “preventable” “epidemic” and that the ADDM report findings could not be explained by improved access to screening. 

Autism is not a disease. You cannot “catch” autism. It is genetic.  We are born autistic, and are autistic our whole lives. Autism is a normal part of life. You cannot “prevent” or “cure” autism, and you should not try to. It is a waste of time and money and harms autistic people. We know this because research aimed at finding the causes of autism has been a major focus of research for decades– even today, biology, genetic and environmental factors research continues to be the overwhelming majority of research about autism. Less than five percent of all federal funding on autism research has ever gone towards studying autism across the lifespan — that is to say, research about autistic adults. This biased perspective leads to rhetoric like Kennedy’s statements, which entirely ignore autistic adults and our own thoughts about our existence. The Secretary clearly believes that we have no business speaking out about what helps us and what harms us.

Kennedy misinterprets basic science to make people feel afraid of more autistic people across different identity groups getting a diagnosis. He responds with shock and horror to the increased number of diagnoses in autistic people of color. The Secretary cherry-picks the information we have about autism diagnosis across history to make it seem as though this change is alarming. In reality, we’ve historically had a diagnostic disparity. For most of our history, clinicians have diagnosed white people as autistic far more often than anyone else.

This is for many reasons. One is that the way we diagnose autism was designed specifically around young, white autistic boys. While there have been some changes to the diagnostic criteria since autism first started being diagnosed, the testing itself holds that bias. This has meant that it came down to the individual person doing the diagnosis to adjust for things like cultural differences in communication style, differences in how women, men, and others are raised to behave, and age, among other factors. We’re only just starting to change how diagnosis works.

What has changed a lot over the time we started diagnosing autism is access to health coverage. Medicaid expansion, the Affordable Care Act (ACA), the creation of state insurance mandates for autism, guidance from the Center for Medicare and Medicaid Services on Early and Periodic Screening, Diagnosis, and Testing, and dozens of federal grants and programs all have made Americans more likely to have access to care, including a diagnosis. That change is likely a big part of why, for the first time, we’re seeing kids of color be diagnosed with autism at higher rates than their white peers in some age groups. It’s not that the amount of autism in the population has changed — it’s that more people are getting the tools necessary to get a diagnosis. This is because of hard work and investment by doctors, scientists, and policymakers to make sure that kids get tested and are able to get support as soon as possible.

This is a good thing. It means that more people have a chance to get resources like home and community-based services and accommodations at work and school. More than that, it gives people access to community with other autistic people. Knowing that you are autistic means knowing that you aren’t broken — it can help you and others understand the different ways you experience and perceive the world around you. This includes a full spectrum of support needs that can vary from person to person, which society should accommodate.

With his statements, Secretary Kennedy attempts to contradict and overrule the report issued by an agency under his control. He ignores science and research done by the CDC in order to push his own dangerous agenda. This is the public health crisis our nation is facing. Between his comments, the hiring of a known quack who conducted harmful experiments on autistic children, and Kennedy’s repeated claims that we would have answers to the cause of autism by September (something impossible to do accurately), Kennedy is waging war on public health information about autism and autistic people. 

These attacks on autistic people are part of a greater effort by him and this administration to undermine the health and civil rights of people with disabilities and other marginalized communities. Kennedy has undertaken mass firings and an attempt to drastically reorganize the Department of Health and Human services. This would leave critical health programs unable to operate, including the very efforts that have expanded screening and diagnostic tools for autism. The dismantling of HHS, the attack on Medicaid and the ACA Medicaid Expansion, and the promotion of misinformation about infectious diseases and vaccination set progress back decades and put all of us at greater risk of serious illness and death.

The administration’s actions speak far louder than their words. In attempting to declare a war on autism, they’ve shown what they’re actually doing — villainizing autistic people. Treating us like a disease or a burden on society, instead of living people who exist and have our own thoughts and ideas about our disabilities, weaponizes pity and fear to deny our basic rights. Claims that we are incapable of working, creating art, or forming relationships all serve as excuses to deny us the very supports we need to thrive in our communities. Together, this is all a smokescreen to try to get people to think that this administration cares about us, all while they cut the services we rely on to survive, cut funding to the people who enforce the civil rights of disabled students, and try to dismantle the agencies that allow us to live freely in the community. 

This administration is made up of the same people who say we should go back to institutions. It is made up of the same people who claim that we are the reason planes crash, rather than their cuts to regulatory bodies for airlines. It is run by the same man who reportedly said his family member with a developmental disability should “just die”. The administration’s blustering about the cause of autism is an attempt to distract us from those truths.

We will not be fooled. We will not be silenced. Autistic children become autistic adults. We are part of natural human genetic diversity. Manipulating and lying about the data to justify policies that harm our community will not work. Nothing about us without us.

Autistic Self Advocacy Network

PO Box 66122
Washington, DC 20035

 

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