Autism by the Numbers
Autism's Astonishing Explosion in California
California Department of Developmental Services autism cases (limited to "substantially disabling" autism) have skyrocketed from 3,262 in 1989 to more than 73,000 today (September 2014 DDS data).
These numbers include only those cases featuring severe functional limitations, and do not include the tens of thousands of other autism cases deemed too mild for inclusion in the Developmental Services system.
Repeated studies have shown that this increase is not due to broadening diagnostics. See our backgrounder here.
More Background: Autism in California
As shown above left, California's autism surge began with births in about 1980, and rates have been rising ever since. Autism was once a rare disorder, and the center graph reflects Department of Developmental Services data from 1987 to 2007, indicating only 2,701 autism cases statewide in 1987. The left-hand graph shows further explosive growth in DDS-eligible autism from 1995 to 2013, with about 70,000 cases today. (As of early 2014.)
The vast majority of autism cases, about 85%, are under the age of 25, with only about 7% over age 31. Now a staggering 5,000-6,000 cases of autism are diagnosed each year in our state, with about 70% of a severity warranting eligibility for Regional Center services.
For ages 3-21, the school districts statewide count about 80,000 children with autism, a number that includes those with higher-functioning forms of autism.
Autism has surged to now represent almost 1/3 of the total DDS population. Almost 70% of all new clients have autism. In 2007, the Regional Centers reported that the average purchase of services cost for an adult with autism was 73% higher than persons with other developmental disabilities. In addition, 79% of Regional Center clients with autism are male.
(Source: California Department of Developmental Services and California Department of Education)
For ages 3-21, the school districts statewide count about 80,000 children with autism, a number that includes those with higher-functioning forms of autism.
Autism has surged to now represent almost 1/3 of the total DDS population. Almost 70% of all new clients have autism. In 2007, the Regional Centers reported that the average purchase of services cost for an adult with autism was 73% higher than persons with other developmental disabilities. In addition, 79% of Regional Center clients with autism are male.
(Source: California Department of Developmental Services and California Department of Education)
Autism in the San Francisco Bay Area: Regional Centers (Limited to "Substantial Autism")
As stated above, the Regional Centers serve about 70,000 people with substantially disabling autism statewide, representing more than one-quarter of the total DDS-served developmental disability population of 270,000. This is up from just a few percent of the overall DD population in the early 1980s.
In the Bay Area, the Regional Centers now count more than 11,400 clients with substantial autism.
East Bay Regional Center (Alameda and Contra Costa counties): 4,450 autism cases, or 30% of caseload
San Andreas Regional Center (Santa Clara, San Benito, Santa Cruz, and Monterey counties): 3,741 autism cases, or 30% of caseload
North Bay Regional Center (Sonoma, Solano, and Napa counties): 1,662 autism cases, or 24% of caseload
Golden Gate Regional Center (SF, Marin, and San Mateo counties): 1,465 autism cases, or 20% of caseload
Shockingly, only about 500 Bay Area Regional Center autism cases, or less than 5% of total, are over the age of 31.
California's Regional Centers serve only those ASD individuals who are deemed to be substantially disabled by autism; they generally do not serve those with milder conditions or who have normal or near-normal cognitive abilities without behavioral challenges. Far from the "expanded diagnosis" rationale for the autism epidemic that is often trumpeted in the media, criteria for Regional Center eligibility became more, not less, restrictive in 2003, yet autism rates continued to skyrocket. Further, these numbers are conservative insofar as they do not include those with multiple diagnoses, or classified under another category.
(Source: Department of Developmental Services, Feb 2014 data)
In the Bay Area, the Regional Centers now count more than 11,400 clients with substantial autism.
East Bay Regional Center (Alameda and Contra Costa counties): 4,450 autism cases, or 30% of caseload
San Andreas Regional Center (Santa Clara, San Benito, Santa Cruz, and Monterey counties): 3,741 autism cases, or 30% of caseload
North Bay Regional Center (Sonoma, Solano, and Napa counties): 1,662 autism cases, or 24% of caseload
Golden Gate Regional Center (SF, Marin, and San Mateo counties): 1,465 autism cases, or 20% of caseload
Shockingly, only about 500 Bay Area Regional Center autism cases, or less than 5% of total, are over the age of 31.
California's Regional Centers serve only those ASD individuals who are deemed to be substantially disabled by autism; they generally do not serve those with milder conditions or who have normal or near-normal cognitive abilities without behavioral challenges. Far from the "expanded diagnosis" rationale for the autism epidemic that is often trumpeted in the media, criteria for Regional Center eligibility became more, not less, restrictive in 2003, yet autism rates continued to skyrocket. Further, these numbers are conservative insofar as they do not include those with multiple diagnoses, or classified under another category.
(Source: Department of Developmental Services, Feb 2014 data)
While in general Regional Center caseloads have more than tripled in the past 25 years, autism cases have grown by about 14x.
(May 2014 DDS data)
Autism Population Example: Santa Clara County
Here is a snapshot of how the developmental disability numbers break down in Santa Clara County, including multiple diagnoses.
Here is a snapshot of how the developmental disability numbers break down in Santa Clara County, including multiple diagnoses.
(Source: San Andreas Regional Center, 2013 data)
Regional Center Autism Cases in Santa Clara County, by City
Unincorporated: 749
Campbell: 87
Cupertino: 169
Gilroy: 97
Los Altos: 48
Los Altos Hills: 3
Los Gatos: 55
Milpitas: (unavailable)
Monte Sereno: 2
Morgan Hill: 90
Mountain View: 76
Palo Alto: 99
San Jose: 2,104
Santa Clara: 237
Saratoga: 75
Sunnyvale: 261
(Source: San Andreas Regional Center, 2013 data)
Regional Center Autism Cases in Santa Clara County, by City
Unincorporated: 749
Campbell: 87
Cupertino: 169
Gilroy: 97
Los Altos: 48
Los Altos Hills: 3
Los Gatos: 55
Milpitas: (unavailable)
Monte Sereno: 2
Morgan Hill: 90
Mountain View: 76
Palo Alto: 99
San Jose: 2,104
Santa Clara: 237
Saratoga: 75
Sunnyvale: 261
(Source: San Andreas Regional Center, 2013 data)
Autism in the San Francisco Bay Area: School Districts (Serving All Autism Spectrum Disorders)
The number of students with autism, ages 3-21, in nine counties of the Bay Area (2012-13 numbers), has surged over the past 12 years:
Alameda County: 3,270 (up from about 350 in 2000-01)
Contra Costa County: 923 (up from about 220 in 2000-01)
Marin County: 266 (up from about 80 in 2000-01)
Napa County: 203 (up from about 40 in 2000-01)
San Francisco: 747 (up from about 150 in 2000-01)
San Mateo County: 1,060 (up from about 250 in 2000-1)
Santa Clara County: 3,531 (up from about 350 in 2000-01)
Santa Cruz County: 342 (up from about 30 in 2000-01)
Sonoma County: 635 (up from about 150 in 2000-01)
Total: 10,977 students aged 3-21 with autism (up from about 1,620 in 2000-01)
(Source: California Department of Education, Special Education Local Plan Area numbers)
Please note: These SELPA numbers include a broader range of autism spectrum disorders as compared to the more substantially disabled subset served by the Department of Developmental Services Regional Centers. In addition, many children with autism are not diagnosed until ages 4, 5, or 6, or sometimes later, and some children with autism are labeled as having speech impairment, specific learning disability, or mental retardation. So, this number is likely conservative.
Also, please note that the 2000-01 numbers are approximations as those SELPA records do not record numbers of students with autism when an age group had fewer than 11 students. When no numbers were given in the dataset we assigned an average of 5 students to the age group.
Alameda County: 3,270 (up from about 350 in 2000-01)
Contra Costa County: 923 (up from about 220 in 2000-01)
Marin County: 266 (up from about 80 in 2000-01)
Napa County: 203 (up from about 40 in 2000-01)
San Francisco: 747 (up from about 150 in 2000-01)
San Mateo County: 1,060 (up from about 250 in 2000-1)
Santa Clara County: 3,531 (up from about 350 in 2000-01)
Santa Cruz County: 342 (up from about 30 in 2000-01)
Sonoma County: 635 (up from about 150 in 2000-01)
Total: 10,977 students aged 3-21 with autism (up from about 1,620 in 2000-01)
(Source: California Department of Education, Special Education Local Plan Area numbers)
Please note: These SELPA numbers include a broader range of autism spectrum disorders as compared to the more substantially disabled subset served by the Department of Developmental Services Regional Centers. In addition, many children with autism are not diagnosed until ages 4, 5, or 6, or sometimes later, and some children with autism are labeled as having speech impairment, specific learning disability, or mental retardation. So, this number is likely conservative.
Also, please note that the 2000-01 numbers are approximations as those SELPA records do not record numbers of students with autism when an age group had fewer than 11 students. When no numbers were given in the dataset we assigned an average of 5 students to the age group.
Where Do People with Autism Live Now?
The vast majority of individuals with substantial autism and served by DDS currently reside in the family home; less than 10% live independent of their parents or guardians. Please note these numbers also include minors.
Residence Type Number of ASD Individuals Percent of Total
Home (parent or guardian) 63,766 90.75%
Community Care (licensed group home) 3,857 5.49%
Independent or Supported Living 1,774 2.52%
Intermediate Care Facility 472 0.67%
Developmental Center 236 0.34%
Skilled Nursing Facility 25 0.04%
Other 138 0.20%
(Source: Department of Developmental Services, 2014 data)
Residence Type Number of ASD Individuals Percent of Total
Home (parent or guardian) 63,766 90.75%
Community Care (licensed group home) 3,857 5.49%
Independent or Supported Living 1,774 2.52%
Intermediate Care Facility 472 0.67%
Developmental Center 236 0.34%
Skilled Nursing Facility 25 0.04%
Other 138 0.20%
(Source: Department of Developmental Services, 2014 data)
What Are the Projected Bay Area Adult Autism Housing Needs?
Scenario One: Conservative estimate with a 3% move-out per year. Let's start off very conservatively in estimating annual Bay Area adult autism housing needed per year. Assuming that of the 11,318 with substantial autism in 12 Bay Area counties, just 3% exit the family home and move into the community each year, we will need to create 340 new beds each year in new supported living homes, group homes, and other supervised care environments. And these beds would serve only those with substantial autism, not including other developmental disabilities or higher-functioning autism not served by the Regional Centers.
This 340-bed scenario would equate to, to invoke one form of supported housing, 85 new Bay Area group homes, each serving four adults with substantial autism, needed each year.
If built according to population percentiles across this 8 million-person area, these 85 new autism group homes would be distributed as follows:
Regional Center of the East Bay
Alameda County: 16.3 homes per year
Contra Costa County: 11.3 homes year
Golden Gate Regional Center
Marin County: 2.7 homes per year
San Francisco County: 8.7 homes per year
San Mateo County: 7.8 homes per year
San Andreas Regional Center
Santa Clara County: 19.3 homes per year
San Benito County: .6 homes per year
Monterey County: 4.5 homes per year
Santa Cruz County: 2.8 homes per year
North Bay Regional Center
Sonoma County: 5.2 homes per year
Napa County: 1.5 homes per year
Solano County: 4.4 homes per year
Scenario Two: Exceedingly conservative estimate with a 1% move-out per year. Now, let's be even more conservative and assume that just 1% exit the family home and move into the community each year. In this scenario, we will need to create 113 new beds each year, equating to 28 new four-client autism group homes.
If built according to population percentiles, these 28 homes would be distributed annually as follows:
Regional Center of the East Bay
Alameda County: 5.4 homes per year
Contra Costa County: 3.7 homes year
Golden Gate Regional Center
Marin County: .9 homes per year
San Francisco County: 2.9 homes per year
San Mateo County: 2.6 homes per year
San Andreas Regional Center
Santa Clara County: 6.4 homes per year
San Benito County: .2 homes per year
Monterey County: 1.5 homes per year
Santa Cruz County: .9 homes per year
North Bay Regional Center
Sonoma County: 1.7 homes per year
Napa County: .5 homes per year
Solano County: 1.5 homes per year
Scenario Three: Homes needed based on new autism cases each year. Scenarios one and two offered conservative estimates: only addressing Regional Center clients, which represent about 70% of autism cases, and only assuming a 1% or 3% family home move-out per year.
Now, let's get more realistic. If there are 6,000 new autism cases in California each year (from full syndrome to higher-functioning cases), and the Bay Area makes up 15 percent of California's autism population, that translates into roughly 900 new cases in the Bay Area each year. That means that in the future, as these children age into adulthood and as their parents become increasingly less able to care for them, we would need, in the Bay Area alone, 225 four-bed group homes per year to house the 900 annual cases. This would translate into:
Regional Center of the East Bay
Alameda County: 43 homes per year
Contra Costa County: 30 homes year
Golden Gate Regional Center
Marin County: 7 homes per year
San Francisco County: 23 homes per year
San Mateo County: 21 homes per year
San Andreas Regional Center
Santa Clara County: 51 homes per year
San Benito County: 2 homes per year
Monterey County: 12 homes per year
Santa Cruz County: 7 homes per year
North Bay Regional Center
Sonoma County: 14 homes per year
Napa County: 4 homes per year
Solano County: 12 homes per year
This 340-bed scenario would equate to, to invoke one form of supported housing, 85 new Bay Area group homes, each serving four adults with substantial autism, needed each year.
If built according to population percentiles across this 8 million-person area, these 85 new autism group homes would be distributed as follows:
Regional Center of the East Bay
Alameda County: 16.3 homes per year
Contra Costa County: 11.3 homes year
Golden Gate Regional Center
Marin County: 2.7 homes per year
San Francisco County: 8.7 homes per year
San Mateo County: 7.8 homes per year
San Andreas Regional Center
Santa Clara County: 19.3 homes per year
San Benito County: .6 homes per year
Monterey County: 4.5 homes per year
Santa Cruz County: 2.8 homes per year
North Bay Regional Center
Sonoma County: 5.2 homes per year
Napa County: 1.5 homes per year
Solano County: 4.4 homes per year
Scenario Two: Exceedingly conservative estimate with a 1% move-out per year. Now, let's be even more conservative and assume that just 1% exit the family home and move into the community each year. In this scenario, we will need to create 113 new beds each year, equating to 28 new four-client autism group homes.
If built according to population percentiles, these 28 homes would be distributed annually as follows:
Regional Center of the East Bay
Alameda County: 5.4 homes per year
Contra Costa County: 3.7 homes year
Golden Gate Regional Center
Marin County: .9 homes per year
San Francisco County: 2.9 homes per year
San Mateo County: 2.6 homes per year
San Andreas Regional Center
Santa Clara County: 6.4 homes per year
San Benito County: .2 homes per year
Monterey County: 1.5 homes per year
Santa Cruz County: .9 homes per year
North Bay Regional Center
Sonoma County: 1.7 homes per year
Napa County: .5 homes per year
Solano County: 1.5 homes per year
Scenario Three: Homes needed based on new autism cases each year. Scenarios one and two offered conservative estimates: only addressing Regional Center clients, which represent about 70% of autism cases, and only assuming a 1% or 3% family home move-out per year.
Now, let's get more realistic. If there are 6,000 new autism cases in California each year (from full syndrome to higher-functioning cases), and the Bay Area makes up 15 percent of California's autism population, that translates into roughly 900 new cases in the Bay Area each year. That means that in the future, as these children age into adulthood and as their parents become increasingly less able to care for them, we would need, in the Bay Area alone, 225 four-bed group homes per year to house the 900 annual cases. This would translate into:
Regional Center of the East Bay
Alameda County: 43 homes per year
Contra Costa County: 30 homes year
Golden Gate Regional Center
Marin County: 7 homes per year
San Francisco County: 23 homes per year
San Mateo County: 21 homes per year
San Andreas Regional Center
Santa Clara County: 51 homes per year
San Benito County: 2 homes per year
Monterey County: 12 homes per year
Santa Cruz County: 7 homes per year
North Bay Regional Center
Sonoma County: 14 homes per year
Napa County: 4 homes per year
Solano County: 12 homes per year
Where Do Adults with All Developmental Disabilities in California Live Now?
Ages 18-21 (Four-year bracket with 7,386 substantial autism cases statewide)
More than 90% of young adults aged 18-21 with developmental disability, including autism, and served by DDS, remain in the family home.
Ages 22-31 (Ten-year bracket with 7,477 substantial autism cases statewide)
For this age cohort, about 74% of people with developmental disability, including autism, remain at home, and the percentage with autism staying home is likely higher. In other words, only about one-quarter of developmentally disabled young adults 22-31 are housed in the community. Of those, about 42% live in licensed group homes, and another 42% live in unlicensed residences, with support staff. The balance live in intermediate care facilities, developmental centers or skilled nursing facilities.
Ages 32-41 (Ten-year bracket with 2,082 substantial autism cases statewide)
About 55% of people with developmental disability, including autism, aged 32-41, remain at home, and the percentage with autism is likely higher. Of those living in the community, about 36% reside in licensed group homes and 50% live in unlicensed residences with support staff. The balance live in intermediate care facilities, developmental centers or skilled nursing facilities.
(Source: Department of Developmental Services, December 2013 data)
Ages 18-21 (Four-year bracket with 7,386 substantial autism cases statewide)
More than 90% of young adults aged 18-21 with developmental disability, including autism, and served by DDS, remain in the family home.
Ages 22-31 (Ten-year bracket with 7,477 substantial autism cases statewide)
For this age cohort, about 74% of people with developmental disability, including autism, remain at home, and the percentage with autism staying home is likely higher. In other words, only about one-quarter of developmentally disabled young adults 22-31 are housed in the community. Of those, about 42% live in licensed group homes, and another 42% live in unlicensed residences, with support staff. The balance live in intermediate care facilities, developmental centers or skilled nursing facilities.
Ages 32-41 (Ten-year bracket with 2,082 substantial autism cases statewide)
About 55% of people with developmental disability, including autism, aged 32-41, remain at home, and the percentage with autism is likely higher. Of those living in the community, about 36% reside in licensed group homes and 50% live in unlicensed residences with support staff. The balance live in intermediate care facilities, developmental centers or skilled nursing facilities.
(Source: Department of Developmental Services, December 2013 data)
Sources:
DDS website http://www.dds.ca.gov
DDS quarterly reports http://www.dds.ca.gov/FactsStats/QuarterlyReports.cfm
Department of Developmental Services Report to the Legislature March 1, 1999 Changes in the Population of Persons with Autism and Pervasive Developmental Disordersin California’s Developmental Services System:1987 through 1998 http://www.dds.ca.gov/Autism/docs/autism_report_1999.pdf
Department of Developmental Services Report Autistic Spectrum Disorder Changes in the California Caseload An Update: June 1987 – June 2007 http://www.dds.ca.gov/Autism/docs/AutismReport_2007.pdf
California Department of Education DataQuest: Special Education Data http://dq.cde.ca.gov/dataquest
DDS website http://www.dds.ca.gov
DDS quarterly reports http://www.dds.ca.gov/FactsStats/QuarterlyReports.cfm
Department of Developmental Services Report to the Legislature March 1, 1999 Changes in the Population of Persons with Autism and Pervasive Developmental Disordersin California’s Developmental Services System:1987 through 1998 http://www.dds.ca.gov/Autism/docs/autism_report_1999.pdf
Department of Developmental Services Report Autistic Spectrum Disorder Changes in the California Caseload An Update: June 1987 – June 2007 http://www.dds.ca.gov/Autism/docs/AutismReport_2007.pdf
California Department of Education DataQuest: Special Education Data http://dq.cde.ca.gov/dataquest
The Autism Society of the San Francisco Bay Area provides information but it does not constitute medical or legal information. Referrals provided are suggestions to organizations that might help, but do not constitute a recommendation. The Autism Society cannot be held responsible for consequences that arise from individual dealings with a professional or organization. The Autism Society provides an I&R service but individuals must assume personal responsibility for what they do with the information provided. Inclusion of any organization does not imply endorsement, and omission does not imply disapproval.
