NDEAM: To Tell or Not to Tell: Issues of Disclosure in The Workplace

October is National Disabilities Employment Awareness Month. To honor NDEAM, I will be taking a break for the month from the Adulting Series and Emphasizing on areas of Employment and Autism. This week, I will be discussing the issue of disclosure in the workplace.

Whether or not to disclose your diagnosis of Autism Spectrum Disorder (ASD) — and when and how — are often difficult decisions. The decision to disclose varies from situation to situation and individual to individual. The Americans with Disabilities Act prohibits employers from discriminating against individuals with disabilities; however, each individual person needs to decide whether or not to disclose disability information and if so what information to disclose.

There are many reasons you may want to disclose your diagnosis. One big reason is that disclosure is necessary before requesting and receiving accommodations at work. In addition to helping to secure accommodations, there are several benefits to disclosing your diagnosis. For example, disclosure may help to:

Provide an open exchange about how your disability may affect your work;

Make you feel more comfortable during an interview or a conversation because you know you are being honest and not trying to hide anything;

  • Give the employer a chance to decide if the disability is going to interfere with work;
  • Explain any unusual behaviors to your colleagues or future colleagues;
  • Find people who will be supportive of you.

However, disclosing your diagnosis may also have some negative consequences, including:

  • It may cause you to be excluded simply based on your diagnosis of ASD;
  • It may prevent you from ever knowing if the diagnosis, or something else, got in the way of being hired, getting a promotion, or getting a new assignment;
  • It may get in the way of the process of finding work.

Issues of disclosure are closely tied to the concept of self-advocacy. If you decide you want to disclose your diagnosis, you should be able to understand ASD and be able to talk about it, label it, and discuss how it may interfere with work. If you are seeking accommodations at work, you will need to discuss which accommodations you need and how they will help you to be successful in your job. If you have difficulty disclosing your diagnosis, a job coach or professional counselor can help you practice talking about ASD and what ASD looks like for you in your day to day life. Sometimes, they can accompany you when you tell your employer.

Often times, an employer will not know much about ASD or may only know what they have seen in the media. You may want to come prepared with educational materials to help your employer and staff to understand and know how to offer support.

Unfortunately, it has become clear that those with mental illnesses face even more barriers than those with physical disabilities, including higher levels of stigma and discrimination.  Although ASD is a developmental disability, it does appear in the same psychiatric manual as conditions like depression and schizophrenia, and may be thought of in a similar way by employers. On the other hand, ASD has some unique characteristics which make it difficult to categorize, including the social disability at its core and the gifts it can bestow, such as incredible memory or attention to detail. This “in between” status is illustrated by the fact that New Jersey legislators recently went to the trouble of specifically including people with ASD under anti-discrimination protections which “previously had applied to people with mental or physical disabilities.”

On an encouraging note, the law intended to protect disabled workers from discrimination has recently been strengthened. Provisions of the ADA were meant to protect U.S. workers with all kinds of disabilities from discrimination in hiring, promotion, training, and all aspects of working life. Employers fought what they viewed as costly provisions, and the federal courts interpreted the law so narrowly that it was robbed of much of its power. As a result, it became nearly impossible to win a workplace disability discrimination case. The situation became so obviously unjust that Congress enacted legislation to restore the law to its original intent in 2008, stating that it was purposely overruling case law that had weakened the ADA. 

The issue of disclosure is linked to rights in the workplace because a person with ASD cannot seek workplace anti-discrimination protection under the law unless he or she reveals the ASD. The same regulations that require businesses to provide equal opportunities to employees with disabilities also require the employee to self-disclose in order for the business to be held accountable for meeting that standard. &

If a person is going to disclose in the workplace, one important consideration is the timing. Should one disclose in an application, or during the interview? When accepting the position? After working in the office and gaining a clearer idea of how the disability may affect performance? Each has its drawbacks.

Unfortunately, there is evidence that revealing a disability during the application phase can have a negative impact. In a University of Hong Kong study15 for example, researchers applied for more than 400 clerical jobs, with some applicants disclosing a disability and others not mentioning a disability. The study found that those most favored for a job interview, in order, were the following: 1) people without a disability; 2) applicants with a hearing impairment; 3) individuals using crutches to walk; and 4) applicants who had suffered depression. Although the study didn’t include applicants with ASD, it clearly showed that the employers favored people without disabilities by more than two to one when choosing which applicants to interview, and that those with a “mental health” issue fared the least well.

Disclosing only after you accept a job may be awkward and hard to pull off in a positive way, and the same could be said of disclosing after you’ve worked somewhere for a time. Still, this can be done, especially using Valerie Gaus’s guidelines. Taking the initiative permits an employee to describe his or her ASD in the most positive light while asking for specific accommodations that will maximize performance. If possible, such a disclosure should take place when things are going well. Disclosing in a defensive way when performance is criticized should be avoided, although one can still try to make the best of such a situation. “I realize now that I should have told you about my ASD. I’m sure that, with the following few accommodations, I can improve my performance quickly.”

What kind of accommodations might an employer provide a person with ASD who does disclose? That will vary a great deal depending on the individual’s challenges and the nature of the job, but might include a quiet workspace, a certain type of lighting, frequent breaks, or help understanding interpersonal exchanges in the office. At this point, we are not aware of any large-scale studies or reports documenting actual accommodations being requested by people with ASD, although such “service epidemiology” research will become critical as the number of adults with ASD grows.

In general, if it is possible to succeed at work without disclosing, many people will choose that path, hoping to avoid any possible stigma or discrimination. * Individuals with ASD may fear that disclosure will damage relationships with supervisors or co-workers, or lead to their being thought of as less able or competent. * In addition to legitimate concerns about job security, some individuals are also reluctant to disclose out of a sense of self-reliance and a commitment to overcoming a disability. *

Stephen Shore, an advocate and adult with ASD, has discussed how disclosure may be avoided, even while getting some accommodations made. Say the individual with ASD has difficulty working under fluorescent lights in his office. If the supervisor is interested in meeting individual workers’ needs to maximize performance, perhaps a simple explanation that the lights make it difficult to work will suffice to get a work station without such lights. In that case, the individual can sidestep the potential risks that come with self-disclosure of ASD. *

In sum, the decision about whether to disclose an ASD in the workplace is a complex one. Will others pick up on the disability, and how will they interpret any residual ASD behaviors that are left unexplained? Can one perform well without any understanding or accommodation on the part of others? Will job security be threatened by disclosure? Will the possibility of promotion or other opportunities be decreased? Will the person’s uniqueness and all they have overcome to succeed be valued? The answers may vary depending on the person, the employer, and the type of job.

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