To Tell or Not to Tell: Disclosing a Disability in the Workplace

Marina Sarris
Interactive Autism Network at Kennedy Krieger Institute

Date Published: March 27, 2018

Young adults entering the workforce today grew up in a time of greater openness about disability. Students with autism often attended class alongside those without disabilities. Special Education plans, called IEPs, made sure that teachers knew a student had a disability and needed certain help to succeed. For students who entered college, registering at the campus disability services office ensured they could continue to get at least some "accommodations" to their autism, such as copies of lecture notes.

So should someone who is used to disclosing his autism in school continue to do so when he enters the world of work? Some says yes: disclosure enables a worker to get an accommodation that can help him get and keep a job. But others say disclosing could lead to subtle or obvious forms of prejudice.

Michael J. Prince, a Canadian professor, summed up the dilemma for people with "invisible" disabilities, such as autism spectrum disorder (ASD). "While disclosure is the route to a workplace accommodation process and can be in the best interest of the employee with a disability," he wrote, "it is a highly risky decision to disclose, with numerous potential disadvantages along with advantages.¹

What are those pros and cons? If you decide to disclose, how and when should you do it, and what accommodations can you seek?

These answers are important, because finding and keeping a job can be difficult for adults across the spectrum. According to Wendy F. Hensel, an American law professor, "the employment prospects of people with autism remain bleak." Almost half of people with autism have at least average intelligence, but "only a small percentage are employed," she wrote in a law review article.² In fact, adults with autism are less likely to work than people with intellectual disability, speech impairments, and learning disabilities.³

First, it helps to understand how U.S. law affects workers with autism.

What Are The Rights of Americans With Disabilities?

Let's start with the Americans with Disabilities Act (ADA), a law that bans discrimination against people with disabilities. The ADA does not require workers to tell employers they have a disability, and employers cannot ask job applicants if they do.² But if a person does tell, called disclosing, she can get an accommodation. Accommodations are changes to how she completes a job interview and, if hired, performs her work. They serve to address a challenge posed by the disability.

Accommodations can be environmental, such as a quieter workspace for someone who cannot function well around noise or distraction, or procedural, such as providing written instructions to someone who struggles with spoken directions. They are also individual. "Ten people can have autism, and they might all need something different as a result of it," explained Melanie Whetzel, lead consultant of the Cognitive/Neurological Team at the Job Accommodation Network (JAN) of the U.S. Department of Labor. JAN provides free advice on workplace accommodations and disability issues to workers and employers.

The ADA can be a ticket to getting what someone needs to land a job, and keep it. But it is important to know the law's limitations. For one, it does not apply to private employers with less than 15 workers. And to be protected, an employee must be qualified and able to perform the job's essential functions, which are "basic job duties that an employee must be able to perform, with or without reasonable accommodation," according to the Equal Employment Opportunity Commission.⁴ Depending on the job, those duties could involve having certain social and communication skills, which are often affected by autism.

Also, an accommodation should be "reasonable," not pose an "undue hardship" to the employer, or limit the essential functions of the job.⁵ How do you know if the accommodation you need is reasonable? It really depends on the circumstances and costs, Ms. Whetzel said. For example, an employee who wants fluorescent lights covered with filters or replaced with lamps in a small workspace is more likely to get that accommodation than someone who wants the entire lighting system replaced in a factory. "You're not entitled to get the exact accommodations you want," she said, but they should be effective.

Also, employers do not have to lower their productivity standards for the worker, although an accommodation should help him complete work on time.

Pros and Cons of Disclosing Autism to Employers

Should you disclose? Most experts say it’s a personal decision, based on a worker's preferences and needs.

Disclosure is not without risk. Dr. Prince, a social policy professor, notes that people who disclose a disability may face stigma.¹ In 1963, sociologist Erving Goffman described stigma as a form of shame imposed by society on people who have a characteristic that is discredited. "Because of the great rewards in being considered normal, almost all persons who are in a position to pass [as normal] will do so on some occasion by intent," Dr. Goffman wrote.³

In the workplace, people with known disabilities may be viewed as needy or an object of curiosity, may languish in "dead-end jobs," or be overlooked for team projects, Dr. Prince wrote, after reviewing different articles on the topic. If something goes wrong, their disability may be blamed.¹

Some workers fear that if they disclose a disability, their employers will look for a different reason to fire them, so that it does not look discriminatory, said attorney Maureen van Stone, associate director of the Maryland Center for Developmental Disabilities. Employers "may be able to justify the termination in another way," she said.

Nonetheless, disclosure comes with advantages, including legal protections and accommodations, according to Ms. van Stone and Dr. Prince. Disclosure also can reduce the stress of keeping the disability a secret, Dr. Prince wrote.¹ Masking or hiding one's symptoms "is often a stressful and exhausting exercise," done to avoid discrimination and negative reactions from others, explained psychologist Noah J. Sasson. Dr. Sasson studies social disability in autism at University of Texas at Dallas.

Little research exists on whether people who disclose a disability and receive accommodations fare better in the workforce than those who don't. However, one study found that adults who disclosed an ASD diagnosis to their employer were more than three times as likely to be employed than those who did not disclose. That 2016 study, by researchers in New York, did not explore why. Two-thirds of the adults they surveyed had a university degree, and those with more education were more likely to have a job.⁶

Getting a Foot in The Door: Disclosing for Interviews

Absent an explanation, communication difficulties in an interview may almost certainly derail the candidacy.

While autism may carry stigma, disclosing it may work in an applicant's favor if it provides a more favorable explanation for certain problems. For example, a job seeker with unexplained gaps in his work history and communication problems might be evaluated more positively if an interviewer knows he has autism, according to law professor Hensel.² "Absent an explanation, communication difficulties in an interview may almost certainly derail the candidacy," she wrote.

A small study found that college students with autism had subtle communication differences during mock job interviews. They took longer to begin answering questions and spoke for more variable lengths of times than other students, according to researchers at City University of New York. They recommended that college students with ASD receive help managing first impressions, a social skill useful in job interviews.⁷

Other studies also found that first impressions can be a problem in autism. Researchers at University of Texas found that observers formed more negative first impressions of people with autism than other people when they viewed or heard videos, photos, or sound recordings of them in a social situation.⁸ A second study found that first impressions improved when observers were told the person had autism, especially if the observers were familiar with autism.⁹

These studies did not involve job interviews, cautioned Dr. Sasson, who led both research teams. "We can’t know what the effects of disclosure would be beyond how it was tested in our study, and the risks and benefits of disclosure likely depend on who is doing the disclosing, who they’re disclosing to, why and how they’re disclosing, etc."

What Types of Accommodations Do Applicants With ASD Seek?

In an interview and a journal article, Ms. Whetzel described examples of pre-employment accommodations received by people who contacted the Job Accommodation Network. For example, one job applicant requested extra time to complete a written test for a library technician job. The applicant explained that he had poor fine motor skills that affected handwriting. The job did not require that books be shelved in a certain amount of time, and the library granted his request.

Others with autism experience anxiety or other difficulties when questioned by strangers in a new environment, as happens during job interviews. They have requested that they be interviewed by smaller groups of people, or even that the first interview be done by telephone, Whetzel wrote in the Journal of Vocational Rehabilitation.¹⁰

People who need extra time to think about a question, and answer it, have asked to see the interview questions in advance, she said. But that request may be denied if reacting quickly is considered essential to the job. An applicant for a fire-fighting job asked to see interview questions in advance, she recalled. "They said no, because you may have to act on your own and act quickly on the job as a firefighter," she recalled.

In other instances, she said, an employer has met an applicant halfway. One person with autism applied for a job counseling prisoners. Instead of a face-to-face interview, he asked the employer to send him the interview questions so he could respond in writing. The employer said no. The applicant would be counseling inmates directly, and the interviewers wanted to evaluate his skills in person. But they did make two changes: they allowed him to see the questions before the interview, and they reduced the number of interviewers from three to two.⁷

When requesting an accommodation for an interview, Ms. Whetzel advised, be prepared to share the nature of your disability and how it affects your ability to participate in the pre-employment process. An employer may ask for medical documentation of a disability if you disclose, according to the Equal Employment Opportunity Commission.⁵

You Want to Disclose Your Autism, But When?

What if an applicant needs an accommodation for the job, but not for the interview? Should she disclose during the interview, or wait until she receives a job offer or begins working?

Again, it depends. "A lot of people tell us they want to be open from the very beginning. 'If an employer is not willing to work with me during hiring process, then they won't work with me later and that's not an employer I want to work with,' they say. We [at JAN] say that's a personal decision. But the later you wait to disclose, there's a lesser chance of being discriminated against," said Ms. Whetzel, a former special educator. In other words, it may be difficult to prove an employer did not hire you because you disclosed having a disability at the interview. But if you disclose after receiving a job offer, "you know you're qualified for the job, and they would have to show why that offer was revoked," she said.

Whether or not job seekers choose to disclose and request an accommodation for ASD, Ms. Whetzel has tips that may help them land the jobs they want. She recommended learning as much as possible about the requirements of a job – what they will they have to do and where will they have to do it – and how their qualifications relate to it. Applicants can use the U.S. Department of Labor's online Occupational Outlook Handbook to research occupations, she said. The handbook describes the duties, required education, and work environments for hundreds of jobs. (See Additional Resources below.)

She advises applicants to think about what they want, and where they thrive. Do you prefer working in a small quiet space, alone or with a few others? Some employers will accommodate you by providing a quiet workplace in a separate area, she said, but others may not, depending on the job. "If you can't work in a sea of cubicles," she said, "then you should know that ahead of time."

Keep It Brief – And Practice

As much as possible, people should be prepared.

She also encourages applicants to keep answers "brief and succinct" during interviews. Because they may interpret language literally, some people with autism get tripped up by broad or vague questions during interviews. Interviewers who ask applicants to talk about themselves are not asking for long, personal stories, she cautioned. They really want information about how their education and experience relate to the job.¹⁰

Another potential pitfall is the interview question, "Tell me about your interests or favorite activities." Many people with autism have special interests¹¹ that they could discuss at length, but interviewers probably do not want a long answer. To keep their answers brief, job hunters can jot down a few points about their interests in advance, and refer to those notes during the interview, Ms. Whetzel said.

And above all, she encourages job applicants to practice their interviewing skills with a job coach, or someone who can conduct a mock interview and provide feedback. "As much as possible, people should be prepared," she said.

Additional Resources:

For more information on workplace laws and job resources:

The Job Accommodation Network provides information to employers and employees about workplace accommodations and the Americans with Disabilities Act. JAN is a free service of the Office of Disability Employment Policy of the U.S. Department of Labor.
See the JAN Workplace Accommodation Toolkit
Information and technical assistance on the Americans with Disabilities Act is available at ADA.gov
U.S. Equal Employment Opportunity Commission's Facts about the American with Disabilities Act
The U.S. Department of Labor's Occupational Outlook Handbook describes the duties, requirements, pay, outlook, and work environments of jobs.
Equal Employment Opportunity Commission's explanation of accommodations: Enforcement Guidance: Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities.
For information on disclosing autism in other situations, please see the IAN article, Adults with ASD: Deciding When to Disclose

References:

Prince, M. J. (2017). Persons with invisible disabilities and workplace accommodation: Findings from a scoping literature review. Journal of Vocational Rehabilitation, 46(1), 75-86. 10.3233/JVR-160844 Abstract.
Hensel, W. F. (2017). People with autism spectrum disorder in the workplace: An expanding legal frontier (february 14, 2017). Harvard Civil Rights - Civil Liberties Law Review (CR-CL), 52. Abstract.
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042-1049. 10.1542/peds.2011-2864 Abstract.
Equal Employment Opportunity Commission. (2008a). The ADA: Your responsibilities as an employer. Retrieved from https://www.eeoc.gov/facts/ada17.html
Equal Employment Opportunity Commission. (2008b). EEOC enforcement guidance on reasonable accommodation and undue hardship under the americans with disabilities act. Retrieved from https://www.eeoc.gov/policy/docs/accommodation.html
Ohl, A., Sheff, M. G., Small, S., Nguyen, J., Paskor, K., & Zanjirian, A. (2017). Predictors of employment status among adults with autism spectrum disorder. Work: Journal of Prevention, Assessment & Rehabilitation, 56(2), 345-355. 10.3233/WOR-172492. Abtract.
Bublitz, D. J., Fitzgerald, K., Alarcon, M., D'Onofrio, J., & Gillespie-Lynch, K. (2016). Verbal behaviors during employment interviews of college students with and without ASD. Journal of Vocational Rehabilitation, 47(1), 79. 10.3233/JVR-170884. Abstract.
Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific Reports, 7, 40700.10.1038/srep40700 [doi] Abstract.
Sasson, N. J., & Morrison, K. E. (2017). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism: The International Journal of Research and Practice, 1362361317729526. 10.1177/1362361317729526 [doi] Abstract.
Whetzel, M. (2014). Interviewing tips for applicants with autism spectrum disorder (ASD). Journal of Vocational Rehabilitation, 40(2), 155-159. Abstract.
Cho, I. Y. K., Jelinkova, K., Schuetze, M., Vinette, S. A., Rahman, S., McCrimmon, A., . . . Bray, S. (2017). Circumscribed interests in adolescents with autism spectrum disorder: A look beyond trains, planes, and clocks. PloS One, 12(11), e0187414. 10.1371/journal.pone.0187414 [doi] Abstract.