Tackling the Unemployment Crisis for Adults with Asperger Syndrome

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 110 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 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.

Marcia Scheiner

Marcia Scheiner

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 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 community and the young people who will soon face adulthood? Websites, social skills classes, job coaches and books instructing the adult with Asperger’s 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 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 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. This number is as large as recent estimates of the lesbian, gay, bisexual and transgender population in this country. 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. To illustrate, within a two-block radius of ASTEP’s offices in NYC are stores from three pharmacy chains – Duane Reade, Walgreens and CVS. All three stores carry the same products for generally the same prices. Yet Walgreens and CVS are known employers of individuals with developmental disabilities, autism among them. At ASTEP we always choose a Walgreens or CVS over Duane Reade.

Reducing the cost of turnover is another benefit to employers in hiring individuals with Asperger Syndrome. Many companies experience high turnover during the early years of employment of recent college graduates. Given the characteristics of individuals with Asperger 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. 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 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 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 Syndrome, and are not properly accommodating those employees they have with Asperger’s, due to lack of knowledge, access and training. Many people and organizations that advocate for or support individuals with Asperger’s are very focused on serving their clients, but do not spend enough time on educating employers. In a survey of 411 companies sponsored by the National Organization on Disability (NOD) and the Kessler Foundation in October 2010, less than half of the companies reported using non-profit, community based, state or federal service providers to recruit individuals with disabilities. Of the companies using these service providers, only 34% rated the service providers as being effective to extremely effective. Of the employers not using service providers, almost half (48%) felt they did not need the services they offer. If the vocational rehabilitation system – both public and private – is to be effective in finding jobs for individuals with Asperger Syndrome, or any disability, these views need to change; and the obligation to change these views lies with the service providers themselves.

Just as thoughtful communication can improve the chances for an individual with Asperger’s of obtaining and retaining a job, it can improve the chances of employers and employment specialists creating a successful partnership. Some simple strategies for advocates can result in a strong employer/employment specialist partnership.

  • Always use the initial meeting with any employer to have them to explain their business and hiring needs. Do not focus on the placement of any particular job candidates, unless the employer asks, at this time.
  • Ask questions, and lots of them. Learn the culture in the workplace – is it a very social environment or not; do they have other employees with disabilities; do employees stay a long time or turnover frequently; does the company provide any skills training. Not only does this provide valuable information in assessing which clients may be appropriate candidates for the employer, it demonstrates to the employer interest in their business and needs.
  • Work with the employer to develop a clear job description before trying to place any clients. For individuals with Asperger Syndrome, understanding the parameters and requirements of the job are critical prior to entering into the interview process.
  • Carefully match employment specialists with companies and clients to ensure a peer to peer relationship.

The view of employers expressed in the NOD/Kessler survey needs to be changed, and will take the efforts of many to do so. But those efforts are underway. In 2006 the NOD narrowed their focus to increasing employment opportunities for the 79 percent of working-age Americans with disabilities who are not employed. In 2010, the Asperger Syndrome Training and Employment Partnership (ASTEP) was founded to promote education for employers, thereby driving change in the employment landscape for adults with Asperger Syndrome. As an employer focused organization, ASTEP strives to: 1) educate and train employers on the benefits of hiring individuals with Asperger’s and the accommodations they may need for a successful employment outcome, and 2) assist employers in working with vocational rehabilitation organizations and employment specialists to recruit and transition individual’s with Asperger’s into work. 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 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 Syndrome and develop strategies to employ individuals on the spectrum.

The Asperger Syndrome Training and Employment Partnership (ASTEP) is a non-profit organization whose mission is to create and support programs that promote long-term employment for adults with Asperger Syndrome. ASTEP provides education and training to the corporate world on the benefits, challenges and accommodations present in hiring individuals with Asperger Syndrome. ASTEP will also work with employers to identify and hire individuals with Asperger’s. ASTEP engages organizations and professionals who work with individuals with Asperger’s to identify job candidates, develop recommended accommodations, train employers about the individual employees and provide any necessary ongoing support. For more information on ASTEP please visit our website at www.asperger-employment.org.

Note: Since the publication of this article, ASTEP has now become Integrate.

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