We don’t know how many adults in the U.S. have autism. The CDC number most frequently quoted for Autism in the U.S. (1 in 110) is the prevalence rate for the autism diagnosis in 8-year-old children in 2006 (released in 2009). This rate is an average of data from 11 sites across the U.S., with rates ranging from 1 in 84 in Missouri to 1 in 240 in Florida. There is no established explanation for this variation. Researchers do not know how the CDC 2006 rate compares to previous generations who now compose the adult population.1
There is no information on how many people have Asperger’s Syndrome compared to Classic Autism. The best estimate is that people with Asperger’s/high functioning autism represent fewer than half of people with autism spectrum disorders and perhaps 25% or less. Most statistics do not separate the two groups.2
The most frequently quoted figure for the number of people with autism in the U.S. is an estimate from the Autism Society of America – between 1 and 1.5 million people. This figure is based on multiplying the total U.S. population by the CDC prevalence rate for 8-year-olds. That assumes there has been no increase in autism over the last 40+ years.3
The dramatic, widely-reported increase in autism over the last two decades is based on the increased prevalence of the diagnosis among school children since the early 1990s as documented through U.S. Department of Education data. Researchers disagree about whether this is an increase in the prevalence of the DIAGNOSIS (how many children have been identified with autism), the prevalence of the DISORDER (how many actually have it), or some combination of both.4,5,6
A 2011 study of adult autism in Britain concluded there has not been a significant increase or decrease in the prevalence of autism in that country during the last few decades (it was consistent across all generations). A 2009 study of children in California suggest there may have been an increase among children independent of the diagnostic changes.7,8
Whether the increase in diagnosis represents a significant increase in actual prevalence or not, autism is not new and there is a significant “hidden” adult population with autism in the U.S. In the past, people with autism have often received a different diagnosis, such as mental retardation, and either housed in institutions, or sent out on their own to live as “odd” individuals in the general community. Thus, adults with autism often lived hidden from the awareness of the general public. In addition, many functional, independent adults have begun to realize that what they have always considered oddness and differences in themselves are actually features of undiagnosed Asperger’s Syndrome or high functioning autism.9,10
There is a rising Great Wave of young adults with autism graduating from high school.
The demographic bulge of children with the autism diagnosis is beginning to enter adulthood and apply for vocational rehabilitation services.11 Even if the increase in prevalence is only diagnostic, the increased support for these children has led to a generation that is more visible and empowered than previous generations.
We don’t know the unemployment rate of adults with autism in the U.S.
Without any data on how many adults have autism, there is no way to calculate an employment rate. There is some information about young adults (see below) but not older adults.
The employment rate for people with disabilities is very low and is even lower for young adults with autism.
In 2010, the proportion of people with disabilities aged 16 – 65 who were working was less than one half that of people without a disability aged 16 – 65 (29% vs. 64%) (Bureau of Labor Statistics).12
From 2001- 2009, the U.S. Department of Education’s National Longitudinal Transition Study (NLTS2) surveyed 11,000 young adults with disabilities ages 15 – 21 to document their living situations. The information below is drawn from tables generated online using this data.13
- In 2009, the percent of young adults with autism who had a job was nearly half that of all young adults with disabilities (33% vs. 59%).
- On average, young adults with autism with a job earned 86% as much per hour as all young adults with disabilities with a job ($8.90/hour vs. $10.40/hour).
- Nearly half of employed young adults with autism earned less than $7.25 an hour, twice the rate for all employed young adults with disabilities (44% vs. 22%).
- Nearly half of employed young adults with autism worked less than 20 hours a week, four times the rate for all employed young adults with disabilities (42% vs. 11%).
- The proportion of employed young adults with autism who were working full time (35 hours or more per week) was one third that for all young adults with disabilities who had a job (26% vs. 71%).
- The proportion of employed young adults with autism who worked in a sheltered workshop environment (only working with other people with disabilities) was seven times that for all employed young adults with disabilities (34% vs. 5%).
There are 10,500 vocational rehabilitation (VR) counselors nationwide helping people with disabilities get jobs.14
In the past, vocational rehabilitation (VR) services for people with autism have had mixed success.
Between 2002 & 2006, people with autism who got VR services were more likely to become employed than VR clients with other disabilities, but those jobs were of lower quality: far lower hourly wages, far fewer hours per week.15,16
The number of people with autism asking for vocational rehabilitation services is rising rapidly.
From 2003 – 2008, the number increased nearly 300%.17,18
There is growing interest in improving vocational rehabilitation services to people with autism
The Autism Works National Conference is an annual conference on improving employment services for people with autism (www.facebook.com/pages/Autism-Works/136057253090452). There are 2 federally-funded research projects on autism and vocational rehabilitation: VCU’s ASD Career Links (www.vcu-autism.org) and SEDL’s Vocational Rehabilitation Service Models for Autism Spectrum Disorders (autism.sedl.org). In spring, 2010, the Journal of Vocational Rehabilitation published an autism-specific issue (vol. 32, pp. 89-100). In 2009, the author of this article published to the web Adult Autism & Employment: A guide for rehabilitation professionals, (www.dps.missouri.edu/Autism.html).
Several state vocational rehabilitation agencies have designated statewide autism service coordinators and are participating in trainings on the needs of adults with autism. A growing number of sub-contractors of the state vocational rehabilitation agencies have begun programs tailored to adults with autism.
There are some remarkable new models emerging of employment for people with autism
These are projects in which people with autism are working in their communities, side by side with neurotypical co-workers, for competitive wages, with no permanent job coaching:
- Walgreens Disability Inclusion Program – employing people with autism and other disabilities in regional distribution centers across the country (www.walgreens.com/topic/sr/distribution_centers.jsp)
- TIAA-CREF: Fruits of Employment – employing people with autism and other disabilities in commercial orchards (http://tcasset.org/innovation-stories/fruits-employment-program)
- Roses for Autism – employing people with autism in commercial rose production (www.rosesforautism.com)
- Aspiritech – employing people with autism in testing phases of software development (www.aspiritech.org)
A more detailed version of this article is available as an online fact sheet at http://dps.missouri.edu/Autism/AutismFactSheet2011.pdf
Dr. Scott Standifer is a Clinical Instructor for the Disability Policy & Studies office (DPS) at the University of Missouri. He is the author of Adult Autism & Employment: A guide for vocational rehabilitation professionals, and of the online Handbook of Disabilities. He is an organizer of the annual Autism Works National Conference, held in St. Louis each March, and has presented on Current Trends in Autism Employment for The Thompson Center for Autism and Neurodevelopmental Disorders. He can be contacted at standifers@missouri.edu or through his website www.dps.missouri.edu/Autism.html.
References
- www.cdc.gov/ncbddd/autism/index.html
- Fombonne, E. (2003) Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update, Journal of Autism and Developmental Disorders, Vol. 33, No. 4, August 2003
- Fombonne, E. (2005) Epidemiology of Autistic Disorder and Other Pervasive Developmental Disorders, Journal of Clinical Psychiatry, 205:66
- Hertz-Picciotto, I., & Delwiche, L. (2009) The Rise in Autism and the Role of Age at Diagnosis, Epidemiolog, Volume 20(1), January 2009, pp. 84-90
- Treffert, D. (2010) Autistic Disorder: 52 Years Later: Some Common Sense Conclusions, Wisconsin Medical Society website, www.wisconsinmedicalsociety.org/savant_syndrome/savant_articles/autistic_disorder
- Brugha T, et al (2011) Epidemiology of autism spectrum disorders in adults in the community in England, Arch Gen Psychiatry 2011; 68: 459-466.
- Hertz-Picciottoa, I., and Delwichea, L.(2009) The Rise in Autism and the Role of Age at Diagnosis, Epidemiology, 20:1, January 2009, 84-90
- Rehabilitation Services Administration – https://www2.ed.gov/rschstat/eval/rehab/statistics.html
- Cimera, R.E., and Cowan, R. J. (2009) The Costs of Services and Employment Outcomes Achieved by Adults with Autism in the US, Autism 2009 13: 285.
- Smith, F. & Lugas, J. (2010) Vocational Rehabilitation (VR) Employment Outcomes for Transition-age Youth with Autism, and Other Disabilities. DataNote Series, Data Note XXVI. Boston, MA: Institute for Community Inclusion. (www.statedata.info/datanotes/datanote.php?article_id=300)
- Unpublished RSA data analysis by University of Missouri Disability Policy & Studies and the Institute for Community Inclusion’s StateData.
- Smith & Lugas (2010) (see above)
