CDC’s Autism Numbers – 1 in 36
The newly published estimated Autism Prevalence rates by the Center for Disease Control and Prevention (CDC) report that 1 in 36 children in the US have an autism diagnosis. This is an 18% increase since 2021 and a 417% increase since 2000.
Thank you to The Autism Community in Action (TACA) for compiling the following Key Facts from the 2020 report by the CDC and the Autism and Developmental Disabilities Monitoring Network (ADDM), which was formed by the CDC 16 years ago. Please read TACA’s press release.
Key Facts from the 2020 report:
- 1 in 36 U. S. children have an autism diagnosis.
- 18 percent increase since the last prevalence survey in 2021. 417 percent increase since reporting began.
- 11 states are included in the survey: AZ, AK, CA, GA, MD, MI, NO, NJ, TN, UT and WI
- 37.9 percent of the children were classified as having an intellectual disability
- 4 percent of boys, 1 percent of girls have been diagnosed with autism
- This new data indicates autism spectrum disorder (ASD) is common across all groups of children and underscores the considerable need for equitable and accessible screening, services, and support for all children.
From the ASPIRE Board
on the new Autism rates and the implications for the PANS PANDAS Community
These numbers represent a true increase in autism rates; the increase is not due to a change in criteria or a result of doctors getting better at diagnosing. We know more and more families need help. Unfortunately, the PANS PANDAS community does not have something similar to the CDC’s Autism and Developmental Disabilities Monitoring Network (ADDM) to monitor the prevalence of PANS PANDAS. Even if we did, the numbers would be falsely low as PANS PANDAS patients are misdiagnosed with another disorder every single day.
These Autism prevalence numbers are important to the PANS PANDAS community because children with Autism are at risk for the same medical conditions as children without Autism, including PANS PANDAS. If you are a parent to a child with Autism or suspected Autism, please consider that your child may have PANS PANDAS. ASPIRE’S Professional Advisory Board has published a toolkit, PANS/PANDAS Guidelines for Children with Autism. Please download the toolkit today and share it with your provider, friends, and family.
Please note that:
* One can have a dual diagnosis of PANS/PANDAS and Autism
* One can be misdiagnosed with Autism but actually have PANS/PANDAS.
* One can have some symptoms seen in PANS but only meet the criteria for Autism and not PANS/PANDAS.
It is also important to note that these updated Autism Rates report an increase in rates among minority children, which may have been underreported in the past due to disparities in the access to diagnosis and treatment in those communities. Many members of the PANS PANDAS community are sure there is a similar barrier to diagnosis and treatment in underserved and minority communities.
Both the Autism and PANS/PANDAS communities need more help. Below is a short sampling of key issues affecting the PANS PANDAS community.
- We need the AAP to put its foot forward to be on the right side of medical history by accepting the validity of PANS and PANDAS so that we can begin to diagnose more children correctly and provide insurance-based coverage
- We need medical communities and organizations to understand that PANS has no age restriction. PANS is not just a pediatric disorder, regardless of the name. Symptoms can linger into adulthood and can begin in adulthood.
- We need state legislatures to pass insurance mandates to ensure coverage of PANS PANDAS diagnosis and treatment.
- We need studies regarding prevalence rates in all communities, including minority communities.
- We need education on PANS PANDAS in medical schools and more opportunities for continuing education.
- We need universal, comprehensive screening for children and adults.
- School districts in all communities must be educated on PANS PANDAS to provide appropriate resources.
PANS/PANDAS & Autism
If you are a parent to a child with Autism or suspected Autism, please consider that your child may have PANS PANDAS. They may not have Autism at all but may have PANS PANDAS, or they may have both conditions. ASPIRE’S Professional Advisory Board has published a toolkit, PANS/PANDAS Guidelines for Children with Autism. Please download the toolkit today and share it with your provider and friends, and family.
No one should be denied a proper evaluation of PANS PANDAS. Members of the ASPIRE Professional Advisory Board have written PANS/PANDAS Guidelines for Children with Autism because, too often, the medical conditions of children with Autism are overlooked and dismissed as “just the autism,” but children with Autism are at risk for the same medical conditions as children without Autism, including PANS PANDAS. This informational packet discusses the unique challenges of diagnosing PANS PANDAS in kids with Autism, what it can look like in the school setting, the PANS diagnostic criteria, and treatment guidelines. Please share this information; let’s work on properly diagnosing and treating children so we do not consign them to a lifetime of mental health issues.
When to Evaluate Your Child with Autism for PANS
- If a child has sudden regressive Autism, they should be evaluated for PANS/PANDAS.
- If a child has sudden worsening of symptoms associated with Autism, they should be evaluated for PANS/PANDAS.
- If a child with Autism has new behaviors or symptoms that correspond to the PANS/PANDAS diagnostic criteria, they should be evaluated for PANS/PANDAS.
Please note not all providers are PANS literate, so if you strongly suspect that your child may have PANS PANDAS, please refer to our Provider list.
TACA Take Action Conference Series – April 2023
TACA’s Take Action Conference Series is an entirely new offering for TACA families. This virtual month-long opportunity will include live lectures from experts, take-action workshops, parent and professional panels, virtual support hours, and sponsor spotlights. On the TACA Connect app, families can access resources, download lecture slides, and interact with other families going through the autism journey. Walk away with bite-sized action steps, a plan for your children, and the empowerment to act confidently.
During the conference, ASPIRE’s president, Gabriella True, will speak on The Overlap Between PANS/PANDAS and Autism. Additionally, she and Jared Skowron, ND, will moderate a Take Action Session on Challenging Behaviors Take Action Session.
Learn more and register today: TACA Take Action Conference Series
Gabriella True
