Jun 20, 2014 0 Share

Workplace Advocacy

Man at whiteboard conducting presentation on hiring people with autism.

First published November 4, 2011.

As the founder of the Asperger Syndrome Training & Employment Partnership (ASTEP), I hear from many parents about the struggles their adult children have obtaining and retaining employment. As the parent of a young man with an autism spectrum disorder (ASD), I know that the anguish parents feel is well founded. 

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 Center for Autism and Related Diseases, 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.

From the time our children are diagnosed with an ASD, we juggle the roles of parent, advocate and protector. We campaign for appropriate educational, medical and social services, while defending our children’s rights to be treated with the same dignity as their neurotypical peers. We are the founders of organizations, the promoters of awareness, and the educators of other families, friends and people touched by autism. We do everything possible to help our kids reach adulthood … and then we start again.

The United States Department of Labor (DOL) data reports that almost 154 million Americans over the age of 16 were employed in August 2011. More importantly, the DOL reported in their 2010 Employment Characteristics of Families that among the approximately 35 million families with children under the age of 18, over 87% had at least one employed parent. If you include the parents of children over the age of 18 who are still dependent on their parents, this number obviously grows. Yet how many of us advocate with our employers to include individuals with autism in their work force? As employees we can take our role as advocate into our workplaces by participating in, or establishing Employee Resource Groups on autism/disability. We can educate ourselves and our employers about the benefits of hiring individuals with autism and how to successfully recruit and retain employees with an ASD.

Strength in Numbers

At ASTEP we talk to employers about the market share advantage they can tap into by employing adults with autism. We show them how the estimated 1.5 million individuals in the U.S. with an autism spectrum disorder diagnosis can mean over 10 million consumers when you include parents, siblings, grandparents, aunts and uncles. That translates into over 3% of the US population. In addition, the vast majority of families with a child on the autism spectrum have at least one parent, grandparent and aunt or uncle who is employed. If we eliminate underage children and retired grandparents, then apply the DOL statistic to the remaining estimate of 7 million people closely related to an individual with autism, we have over 6 million individuals who can each be an advocate with their employer. Less than 25% of those individuals would have to be successful in creating one job for one individual on the autism spectrum to employ the entire diagnosed population of 1.5 million people over time. Imagine a zero percent unemployment rate among individuals with autism.

Changing the Employment Landscape

Of course, this is a rather simplistic view. If it were this easy, we know that the parents of children with autism would already have convinced their employers to create those jobs. Yet a real opportunity exists today for parents of children with autism to change the employment landscape for existing and emerging adults with autism. We’ve all read about the exemplary parent inspired programs established by Walgreens and TIAA-CREF, and the parent founded companies Aspiritech and Specialisterne. But not everyone is in a position that allows them to drive such an initiative with their employer or has the resources to establish their own company. Yet all of us can advocate in our place of employment in a number of ways:

  • Utilize corporate matching gift programs when donating to autism organizations. The financial impact of doubling your donation to non-profit organizations is obvious.
  • Join Employee Resource Groups for parents of individuals with disabilities. Many companies sponsor groups with a focus on the special interest or affinity of a select group of employees. These groups are often based on race, gender, national origin, and sexual preference, with a growing number of companies including a group for special needs caregivers and individuals with differing abilities. These groups not only provide a supportive environment for members, they sponsor activities within the company that educate others about their specific area of focus. As an example, during Autism Awareness Month this past April, ASTEP was invited to attend a panel discussion, arranged by such a group at J.P. Morgan, with three professionals in the field of autism. These groups can be a powerful conduit in raising awareness and communicating employee concerns to an employer.
  • Be open about having a relative on the spectrum. Disclosure is an often discussed topic among adults with Asperger Syndrome, with the views on disclosure being as varied as the individuals themselves. Disclosure is also an often discussed topic among human resource and diversity and inclusion professionals. How is an organization able to know and measure its successes and failures employing individuals with hidden disabilities if those individuals don’t disclose? How should an employer manage issues arising with an individual they suspect may have a hidden disability without crossing legal and privacy boundaries? What obligations does disclosure create for an employer under the Americans with Disabilities Act (ADA) These are all legitimate concerns for employees and employers. One way of easing the fears and concerns of employers about these issues is for employees touched by autism in their own lives to be open about their experiences. We’ve all heard the quote “Ignorance breeds fear." As parents, grandparents, aunts, uncles, and siblings of individuals with autism, we can bring knowledge into our workplace, helping to alleviate the fear of what it means to hire an individual with an ASD. It is hard to expect your employer to actively seek to recruit individuals with autism if you yourself do not share your own experiences with autism with your employer.
  • April is Autism Awareness Month and October is National Disability Awareness Month, so suggest speakers from autism related organizations. Large employers sponsor a variety of events that serve the special interests of their employees and customers, and support the interests of their broader community. Not only are companies anxious to hold these types of events, they are eager to receive suggestions of topics and speakers from the audiences for these events. Take advantage of this opportunity to promote autism awareness and education with your employer.
  • And most importantly, understand and communicate the benefits of hiring individuals with autism. This is by far the most powerful action you can take, and the information is available to make you an educated advocate for the hiring of individuals with an ASD. 

Talking Points for Employees

It was already pointed out above that over 3% of the U.S. population is touched in some way by autism. Not only is this important from the perspective of the number of individuals that can become advocates with their employers for the hiring of individuals with an ASD, this is important from a business perspective for companies. Like other groups, individuals who are living with autism, as well as their family members, can be issue-sensitive consumers. Given the numbers, individuals touched by autism comprise a meaningful market share to companies. Companies that actively include individuals with autism in their workforce should be encouraged to be public about their efforts, not only to garner market share with this segment of the population, but to serve as an example to other companies.  

Reducing the cost of turnover is another benefit to employers in hiring individuals with autism. Many companies struggle with the high cost of turnover, particularly in entry level or repetitive jobs. In the recently published Mercer's What's Working global survey, the percentage of workers age 16 to 24 who said they were seriously considering leaving their organizations was on average 10 percentage points higher than the overall work force. For those age 25 to 34, the number was 5 percentage points higher than the average. In the U.S., the youngest employees’ interest in leaving was even more prevalent, at 12 percentage points above the average.  

Desire for routine and extreme focus can be characteristics of individuals on the spectrum, leading them to be loyal and highly productive employees. 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. For Home Depot, greater retention resulted in reduced costs. 

In a survey of 411 companies, sponsored by the National Organization on Disability (NOD) and the Kessler Foundation in October 2010, 33% of the respondents reported lower turnover rates among their employees with disabilities. However, many employers worry about the cost and disruption associated with hiring and accommodating an employee with an ASD. In relation to costs, the NOD/Kessler study found that almost two-thirds of the employers reported no difference in the cost of hiring employees with or without a disability; and a whopping 80% said that the Americans with Disabilities Act neither helped nor hurt them. 

The most complex accommodation needed for an individual with autism is establishing the appropriate communication tools between the employee, their manager and their colleagues. The form of communication that will allow one individual to excel on the job will often be different for another employee with an ASD. This, however, is no different for any individual—on the spectrum or not. Appropriate communications training benefits all individuals, improving all of their interactions at work, whether or not they are affected with autism.

So while today’s data on employment for adults with autism are dismal, the arguments exist to push for change. Parents, grandparents, aunts, uncles and siblings need to arm themselves with the knowledge about why employers will benefit from hiring individuals on the spectrum and advocate for those with autism in their own workplace and the workplace of clients, vendors and friends.