Even limited to more severe forms, autism prevalence in America’s most populous state continues to grow; a 4,300% caseload increase over 35 years
Read the report here.
San Mateo, California, April 2, 2021 — A new report issued by Autism Society San Francisco Bay Area (SFASA) documents the dramatic, relentless growth of autism cases in the state’s developmental disability services system over the last 30+ years, a trend that continues to today. The report, “Autism in California 2020: A report to the public,” shines a light on an enormous and escalating public health crisis that has dropped from the public eye as the nation has focused on the Covid-19 pandemic.
Based on data from the California Department of Developmental Services (DDS), the surging rates of autism have yet to plateau in the nation’s most populous state, despite widely held assumptions that autism rates would flatten after the unexpected increase in autism rates were first detected in the late 1980s and 1990s. DDS data encompasses cases with significantly disabling autism, and omits milder forms of the disorder. California has long been recognized as keeping the best data on developmental disability-qualifying autism in the country, owing to the requirements of the state’s unique Lanterman Act.
“On this Autism Day 2021, nothing can be more important than reminding the world that the devastating surge of disabling autism, now in its fourth decade, continues unabated,” says SFASA president Denise Haas. “The implications for policy and research are profound.”
Autism was a rarity in the DDS system through the 1980s, but caseload growth has been relentless since that time. Now the system has about 133,000 autism cases, a phenomenon that has overwhelmed the state’s regional centers, which report that about 70% of all intakes are now autism cases.
Some highlights from the report:
• The DDS autism caseload was about 3,000 in the mid-1980s, but has reached about 133,000 today, reflecting growth of about 4,300%.
• About 10,000 new autism cases, the vast majority of whom are young children, are now added to the DDS caseload each year.
• Birth year prevalence of DDS autism is about 1.5% for children born in 2014, up from .04% for those born in 1980.
• A massive expansion in adult services is needed: for every 40-year-old with DDS autism in 2020, we can expect to see at least 27 40-year-olds with DDS autism in 2054. Much more attention is needed on the critical question of what happens when parents can no longer care for these disabled adults.
The prevalence of DDS autism has increased approximately 11% per year. As of birth year 2014, nearly 1.5% of all children in the state qualified as DDS autism cases (a number that may increase as more cases enter the system).
• In the 7 years from 2013 to 2020 DDS added as many autism cases as in the 33 years from 1980 to 2013.
• Consistent with trends in other states and nationwide, autism cases in DDS are about 4:1 male to female.
• The steady rise in children receiving DDS services is evident in all racial/ ethnic groups. Far from plateauing, the trajectories in early childhood appear steeper in recent years. Children of Hispanic (vs. non-Hispanic) mothers were less frequently diagnosed with ASD, but this is changing.
• The hypothesis that the increase is largely due to greater awareness, changing criteria, and other diagnostic factors has not been substantiated with respect to DDS autism rates: DDS criteria are significantly more stringent than general diagnostic criteria, and grew more stringent in 2003. The forces behind the surge remain largely unknown, but the hypothesis that vaccines are responsible for the increase has been firmly ruled out by numerous scientific studies.
“We are facing a public health crisis of epic proportions,” says Haas. “This unambiguous data carries grave implications — how can we radically expand services and funding to support an unprecedented population of autistic adults who cannot live on their own? Where will they live and who will care for them after their parents no longer can? Current research targets have failed to make serious inroads into understanding causes of the autism increase that has plagued increasing numbers of children over the past 30 years, and we still have no roadmap for the future for the burgeoning population of disabled adults.”
The California report comes on the heels of a presentation on New Jersey autism rates by Dr. Walter Zahorodny, PhD, of Rutgers Medical School, as part of the National Council on Severe Autism Policy Summit. He reported a recent and alarming finding that autism rates in New Jersey were also increasing without a plateau, with recent data indicating autism rates of about 9% in that state’s largest suburban school district. CDC data has already shown that 5% of all 8 year-old boys in New Jersey have autism. Recently published data from other countries has also shown a continuing increase in autism rates, including North Ireland, Japan, and Denmark.
The report is the result of a collaborative effort among advocates and researchers. SFASA wishes to thank the experts who contributed to the Autism in California 2020 report, including Irva Hertz-Picciotto, Ph.D, University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; Jennie Sotelo-Orozco,Ph.D, Department of Public Health Sciences, UC Davis School of Medicine; Alexander G. MacInnis, M.S., M.S., independent researcher; Elizabeth Angel Guerrero, M.S., University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; Yunin Ludeña, M.S., M.A., University of California, UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; with assistance from Judy Van de Water, Ph.D, UC Davis MIND Institute; Jessica Cacioppo, M.S., UC Davis MIND Institute and Department of Public Health Sciences, UC Davis School of Medicine; the board of directors, SFASA; and the staff at California DDS who contributed the raw data.
For more information, please contact:
Autism Society San Francisco Bay Area, info@sfautismsociety.org
National Council on Severe Autism: info@ncsautism.org