1 in 44 new national autism prevalence rate, 1 in 36 in Minnesota

The Centers for Disease Control’s Autism and Developmental Disabilities Monitoring (ADDM) Network released its surveillance of Autism Spectrum Disorder (ASD) report on Dec. 2, 2021 which notes that one in 44 U.S. children has ASD. This reflects an increase over the previous report of one in 54. Also consistent with previous findings, boys are 4.2 times as likely to be identified with ASD than girls.

Overall ASD prevalence did not vary by race and ethnicity, although at certain sites Hispanic children were less likely to be identified as having ASD than white or Black children. Black children were classified as having intellectual disability at a higher proportion compared with white and Hispanic children, which is consistent with previous findings.

These estimates from the ADDM Network are based on data collected from health and special education records of children living in 11 communities across the United States during 2018. To determine ASD among children aged 8 years, information was collected from abstract developmental evaluations and records from community medical and educational service providers.

MN-ADDM, part of the ADDM Network, monitors the prevalence of ASD and of intellectual disability (ID) in parts of Hennepin and Ramsey counties. MN-ADDM collects ongoing data on ASD prevalence in MN communities and provides ASD prevalence estimates every two years. Key findings are indicated below:

• In Minnesota, the prevalence rate for autism is one in 36, the third highest rate of the 11 data collection sites throughout the country. Minnesota data was collected from parts of Anoka, Ramsey, and Hennepin County, including the city of Minneapolis. This new prevalence rate is higher than the previous study which identified Minnesota prevalence as 1 in 44. ADDM notes that this study year included a change in methodology, and prevalence rates prior to study year 2018 are not directly comparable.

• Males are 4.2 times more likely to be identified with ASD than females. In Minnesota there were differences between percentage of males and females identified, with more males than females. This number is consistent with both previous Minnesota and current national estimates.

• Minnesota had intelligence quotient (IQ) data available for 81 percent of 8-year-old children identified with ASD. Of those children with ASD in MN, 29 percent had an intellectual disability.

• MN-ADDM collects ASD prevalence data across racial and ethnic groups to better understand rates of ASD in MN communities and to identify health disparities. Among 8-year-olds in Minnesota, Black children were 1.8 times more likely to be identified with ASD than Hispanic children and 1.3 more likely to be identified with ASD than white children. Among 4-year-olds, Black children were 1.4 times more likely to be identified with ASD than White children, and Asian children were twice as likely to be identified with ASD than White children. Data should be interpreted with caution due to small sample sizes, particularly regarding Asian children. Additional information will be available regarding Somali and Hmong populations in 2022.

• The median age of first ASD diagnosis by a community provider in Minnesota was 63 months (or 5 years, 3 months) of age. ASD can be diagnosed by 2 years of age. Minnesota is identifying children with ASD at much later ages than is recommended.

• Approximately 45 percent of children later identified with ASD had an evaluation (of some kind) documented in their records by age of 3. While this is a slight improvement from previous the previous study year, Minnesota needs to continue to find ways to lower the age of first evaluation by community providers. Data on 4-year-olds indicates we may be identifying young children faster. Children in the 4-year-old group were identified with autism at 1.8 times the rate of 8-year-olds.

In addition to focusing on early identification and intervention, Minnesota services and support are critical now and as children grow into adolescence and adulthood. To meet this increasing need, additional resources are required to support diagnostic, educational and treatment options for children with ASD.

Because of Minnesota’s current ASD provider shortage, building resources and capacity is imperative. Continued efforts are needed to train, recruit, and retain professionals in the field of ASD, particularly individuals from culturally and linguistically diverse backgrounds.

Parents, caregivers, and advocates are encouraged to use these new findings to encourage increased supports. “I use information from the Minnesota ADDM program in my work as a parent advocate with Minnesota legislators,” Kelly Kausel, mother of a child with autism and parent advocate, said. “To be able to show that over 2 percent of children in Minnesota have autism, and that Minnesota has one of the higher autism rates compared to other states helps to motivate people to action. It helps us understand the needs of children with autism in Minnesota today and what needs we should plan for as children become adults.”

Ellie Wilson, Executive Director of the Autism Society of Minnesota agrees. “As autism diagnoses increase, so, too, does the need for programs and services to support individuals with autism from birth through retirement and to provide education and training to our communities,” Wilson said. “For more than 50 years, AuSM has been supporting individuals affected by autism through community-building, education, advocacy, and information and resources. We also understand the importance of early identification and of informing policies promoting improved outcomes in health care and education for individuals with autism.”