Autism Prevalence in Kentucky Infographic

This infographic PDF download is a follow up to the 2019 Population and Autism Estimates for Kentucky Counties PDF that we posted in August, 2020.

Narrative Overview

The KY Advisory Council on Autism (KYACA) promotes collaborative efforts and advocates to improve systems of supports for individuals with autism. Collaborative partners include the Kentucky Department for Public Health, the University of Kentucky Human Development Institute, the University of Louisville Kentucky Autism Training Center, the Kentucky Department for Education, the KY Office of Vocational Rehabilitation, and the KY Office of Autism. Through collaboration and research, the KYACA created the October 2020 Report: Kentucky Autism Prevalence Infographic.

The purpose of this infographic is to promote awareness about national autism prevalence rates and to apply these national rates to the KY population, highlighting an increase in current autism rates.  The national estimated rate for Autism Spectrum Disorder (ASD) is about 1 in 54 or 1.85 percent of a national sample of 8-year-olds. This prevalence is higher than that of the previous report in 2018, which found an ASD prevalence of 1.7 percent, or 1 in 59.  Of course, these are estimated prevalence rates, and the rates of actual identification of children and adults are lower, and reflect a need to redouble our efforts to ensure that all individuals with ASD have the opportunity for accurate screening and diagnosis.

This ratio or percentage is based on the Autism and Developmental Disabilities Monitoring (ADDM) Network data published by the CDC. ADDM data estimates are for school-age children and have been utilized nationally for lifespan population estimates of those with autism. Based on current data sources, ADDM offers the most accurate and conservative estimates of autism rates nationally.  For this infographic, the 1 in 54 national prevalence rate was applied to U. S. Census Bureau population estimates for Kentucky in 2019.

Both of the links referenced above are on the bottom of the first page of the infographic.

•            Autism and Developmental Disabilities Monitoring (ADDM) Network – https://www.cdc.gov/ncbddd/autism/addm.html

•            Population Data from US Census Bureau – https://www.census.gov/quickfacts/fact/table/KY/PST045219

This infographic will be available online through the KY Advisory Council on Autism website at www.kyaca.org.

Finally, because this will not be accessible to everyone, we plan to make these data available in other formats. For example, we plan to:

a) create a document that describes all of the content on this infographic, and

b) narrate the text and make an audio file available.

Specific Information

On the first page of this infographic, each of the data summaries or charts below is based on the ADDM Data and U.S. Census Bureau (links noted at the bottom of the first page): 

•            It is estimated there are 82,735 autistic people in Kentucky 

•            In _(Fayette)_ County, it is estimated there are _(5, 984)_ people with autism

•            Kentucky Autistic Population by Age bar graph

•            Kentucky Autistic Population by Race bar graph.

On the first page, the line graph chart for ADMM National Autism Prevalence Report Data is based solely on data from the Autism and Developmental Disabilities Monitoring (ADDM) Data published by the Center for Disease Control (CDC) at http://www.cdc.gov/ncbddd/autism/addm.html

The green ratio of 1:54 under the line graph number “18.5 Prevalence per 1,000 children” is the last year of data published in 2020 based on data compiled and analyzed from 2016. 

For additional ratio and information about each year reported on the line graph, see estimated prevalence rates of ASD in the U.S. reported previously:

•            1:54, one in 54 children in the 2020 report based on 2016 data is 18.5 per 1,000 or 1.85% of the population

•            1:59, one in 59 children in the 2018 report based on 2014 data is 16.8 per 1,000 or 1.68% of the population

•            1:68, one in 68 children in the 2016 report based on 2012 data is 14.8 per 1,000 or 1.48% of the population

•            1:68, one in 68 children in the 2014 report based on 2010 data is 14.7 per 1,000 or 1.47% of the population

•            1:88, one in 88 children in the 2012 report based on 2008 data is 11.3 per 1,000 or 1.13% of the population

•            1:110, one in 110 children in the 2009 report based on 2006 data is 9 per 1,000 or 0.90% of the population

•            1:125, one in 125 children based on 2004 data is 8 per 1,000 or 0.80% of the population

•            1:150, one in 150 children in the 2007 report based on 2000 and 2002 data is 6.7 per 1,000 or 0.67% of the population

On the second page, at the top of the page next to the title “From 2013-2014 to present”, the statement “61% increase in the number of students with autism” references the increase from 2013-2014 to the 2019-2020 school year for students with autism who also have IEPs.

Under “This could partially be attributed to:” are three bullets that describe collaborative efforts between the KYACA, Office of Autism, and other council partners. Further detail is provided under each bullet below.

•            Collaborative efforts by Kentucky Advisory Council on Autism (KYACA), Office of Autism, and KY Learn the Signs Act Early Ambassadors to promote early identification (since 2013-2014).

              Some of these efforts include:

o            Two KY Learn the Signs Act Early Ambassadors who promoted early identification throughout the state of KY in systems like pediatrician and other primary care offices, Early Childhood Mental Health Specialists, community mental health centers, local health department programs, child care partners, and other early care and education systems, and professionals. 

o            In 2016, First Steps, Kentucky’s early intervention program or Part C program, began process improvement activities to clarify eligibility and evaluation procedures for children with autism. These activities included statewide training and technical assistance provided by the University of Louisville Autism Center to First Steps providers on the use of early screening and diagnostic measures and follow-up intensive level diagnostic evaluations performed at the U of L Weisskopf Child Evaluation Center. This collaboration has led to increased identification of ASD in children under age three.

•            KYACA and Office of Autism’s support of Kentucky Autism Training Center Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) training for school psychologists and other behavioral health providers annually.

              Efforts include:

o            KATC has hosted and coordinated annual training by nationally certified ADOS-2 trainers from Vanderbilt University. This training has been targeted to school psychologists, school evaluators, and other community mental health providers able to offer ADOS-2 training.

o            Over several years, KYACA has provided funding to support several cohorts of community mental health and other behavioral health providers to attend the training.

•            KDE, Office of Autism, and KYACA partners created and published the 2017 KDE Autism Guidance Document.

o            The link to this document can be found in the middle of the second page under “For more resources visit’ under the fifth bullet. 2017 KDE Autism Guidance Document

On the second page, there are two line graphs titled “KDE Students ages 3-21 with Autism” and “KDE students ages 3-21 with IEPs”. Both graphs include data from the Kentucky Department of Education (KDE) Child Count Data from 2013-2014 through 2019-2020 School Year (SY).

•            These two charts were placed next to each other to show that while there has been an overall upward trend or increase in IEP student population over the last few years, the increase is not as pronounced as it is for those diagnosed with autism. 

•            Also, the number of students ages 3-21 with autism only captures a portion of the students with the medical diagnosis of autism in the schools.

•            Students with a medical diagnosis of autism are also captured as IEP students in additional IEP categories like developmental delay, other health impaired, mild mental disability, functional mental disability, and emotional behavior disability.

•            In addition, there are some students with autism not served through an IEP, but who are served under a 504 plan, and there are a few students served by the school system that do not have either a 504 or IEP.

Under the section For More Resources, visit www.kyaca.org

•            All data estimates on the first page of this tool are based on the latest CDC National Prevalence Data that an estimated 1.85 percent (about 1 in 54) of a national sample of 8-year-old children have ASD. The autism trend chart is based on the same study of a national sample of 8-year-old children. In a separate study, CDC has estimated similar prevalence rates for adults.

•            Kentucky Autism Prevalence Data utilize the national CDC estimates applied to U.S Census estimates for 2019.

•            School data are from the Kentucky Department of Education (KDE) Child Count Data.

•            For a listing of all KY estimates, click this link: 2019 Population and Autism Estimates for Kentucky Counties

o            This links to a 4-page document that includes all county data already on the KYACA website 2019

Population and Autism Estimates for Kentucky Counties – https://www.kyaca.org/2020/08/26/2019-autism-ky-data/

•            Click this link for the 2017 KDE Autism Guidance Document

Approval Process:

The Cabinet for Health and Family Services has approved this infographic, including approval by the Department for Public Health and Department for Behavioral Health, Developmental and Intellectual Disabilities. In addition, the Kentucky Department for Education has approved the use of this document.