Those of us who are touched by autism – either personally or professionally – are all too aware of the statistics for this population. In its most recent estimates, the Center for Disease Control projects that 1 in 88 individuals in the U.S. are born with an Autism Spectrum Disorder (ASD). These prevalence numbers jumped in 1994, and have been climbing ever since, when the diagnostic criteria for Asperger Syndrome were included in the DSM-IV as an ASD.
According to data published by the Data Accountability Center (which was funded in October 2007 by the Office of Special Education Programs, U.S. Department of Education) the number of children ages 6-21 diagnosed with autism and receiving services under the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) - Part B and C increased on average 43% per annum from 1997-2006. During this same time period, the average growth rate for children with all disabilities receiving services under the IDEA grew at an average annual rate of .4%. It is also estimated that 80% of individuals diagnosed with an ASD are under the age of 20.
Many professionals agree that these statistics greatly underestimate the overall number of individuals with an ASD, as today many adults on the autism spectrum have never been diagnosed. Underestimated or not, these statistics foreshadow a wave of individuals on the spectrum entering adulthood over the next ten years. Yet, for adults on the spectrum, employment statistics are dismal.
In a 2008 study of 200 families with transition age and adult children with an ASD, conducted by the University of Miami/Nova Southeastern University CARD, 74% of the respondents were unemployed and 74% of those employed worked less than 20 hours a week. Most studies indicate that 75-85% of adults with Asperger’s Syndrome do not hold a full-time job. Federal and state vocational programs are underfunded and overwhelmed by requests for services. The Federal Department of Health and Human Services reports annual average staff turnover rates of 50% for programs serving adults, with staff vacancy rates of 10-12%. Yet we all know that gainful employment is a proven factor in improving self-esteem, reducing instances of depression, and promoting financial independence.
So how do we address this crisis for adults in the Asperger’s community and the young people who will soon face adulthood? Websites, social skills classes, job coaches, and books instructing the adult with Asperger’s about how to behave in the workplace abound. Increased awareness and sophisticated interventions have resulted in many individuals with autism spectrum disorders, particularly those with Asperger’s Syndrome, successfully completing post-secondary education. However, as a hidden disability, Asperger’s is not understood in the workplace, and support systems for adults on the job are virtually non-existent. This leaves individuals with Asperger’s – who often have unique talents and capabilities - as a largely untapped workforce.
To date, the responsibility for fitting into the workplace has fallen largely on the shoulders of the individual on the spectrum. As a result, many of the resources for individuals with Asperger’s focus on what they need to do to “fit in”, with little or no attention given to what the employer can do to accommodate the individual, and why they should. It is important to recognize that the road to successful employment for individuals with Asperger’s is a two-way street. The need to educate employers on how to hire and retain employees with Asperger’s Syndrome is as critical as educating individuals with Asperger’s on how to seek employment and meet their employer’s behavioral expectations.
The first thing to accept in addressing the employment crisis among adults with Asperger’s is that employers’ decisions are largely driven by the bottom line impact. As a result, all decisions, whether they are to hire an individual, buy from a particular vendor, or produce a specific product, must result in a benefit – usually economic - to the company. So with already high unemployment rates in the U.S., and a readily available supply of potential employees without an ASD, why should an employer seek out these individuals as a part of its staffing strategy?
The social responsibility and diversity reasons are obvious, but compelling economic reasons exist as well. It is estimated that 1.5 million individuals in the U.S. have been diagnosed with an ASD. When the close family members of those diagnosed are included (parents, siblings, grandparents, aunts, and uncles), the population of people affected by autism is approximately 10.5 million, or 3.4% of the U.S. population. Like other groups, individuals who are living with autism, as well as their family members, can be issue sensitive consumers. At 3.4% of the U.S. population, individuals touched by autism comprise a meaningful market share to companies and their loyalty can be earned by being an employer of individuals on the spectrum.
Reducing the cost of turnover is another benefit to employers in hiring individuals with Asperger’s Syndrome. Many companies experience high turnover during the early years of employment of recent college graduates. Given the characteristics of individuals with Asperger’s Syndrome – loyalty, desire for stability, extreme focus – they are less likely to “job hop” during the early years of their career.
A program instituted by Home Depot illustrates this point. In 1997, Home Depot created a program to hire individuals with developmental disabilities, including autism, in their stores. They found that the retention rate for individuals with a developmental disability was 50%, versus 34% for other employees. Greater retention results in reduced costs.
Lastly, the social interactions required of a work environment are often the biggest challenge for an individual with Asperger’s Syndrome. The education and training required for an employee with Asperger’s and their manager and colleagues to work together effectively is centered on education about Asperger’s and communications training. The Asperger’s education component involves making managers aware of the particular challenges faced by the employee with Asperger’s – their communication style, learning style, sensory issues. The communications training includes teaching managers, colleagues, and individuals with Asperger’s how to communicate information and expectations, including behavioral expectations and needs, in a clear fashion. Appropriate communications training benefits all individuals who are trained, with those benefits improving all of their interactions at work, not only those with the employee who has Asperger’s.
So if the benefits of hiring individuals with an ASD are so compelling, why aren’t more employers seeking out these individuals? For those of us steeped in the subject and those who have Asperger’s Syndrome, the benefits are obvious. Unfortunately, the benefits are not so obvious to the rest of the working world. Employers are not consciously seeking out employees with Asperger’s Syndrome, and properly accommodating those employees they have with Asperger’s, due to lack of knowledge, access, and training.
So in 2010 I founded the Asperger Syndrome Training & Employment Partnership (ASTEP) with the mission of creating and supporting programs that result in long-term (and appropriately challenging) employment for adults with Asperger’s Syndrome and high-functioning autism. Our focus is on educating large national employers about the benefits of employing individuals on the autism spectrum and the accommodations they may need. Corporate America is certainly aware of autism, with the majority of companies showing their support through sponsorship of autism awareness events and donations to autism-related non-profits. Less common, however, are strategic initiatives to include individuals with autism in corporate diversity hiring practices.
At ASTEP, we spend our days talking to employers about the benefits of hiring individuals with Asperger’s and teaching them about the accommodations required to reap those benefits. Surprisingly, employers are more aware of Asperger’s Syndrome than one might think, but most admit feeling woefully unprepared to manage the issues that arise with employees on the spectrum. This awareness creates an opportunity for us to help employers better understand Asperger’s Syndrome and develop strategies to employ individuals on the spectrum.
President and Founder
Asperger Syndrome Training & Employment Partnership (ASTEP)
The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.