Adults with ASD: Deciding When to Disclose

Teresa Foden
IAN Assistant Editor

Connie Anderson, Ph.D.
IAN Community Scientific Liaison

ian@kennedykrieger.org

Date Last Revised: February 7, 2011

Date Published: June 16, 2010

There are teens and adults with high-functioning autism spectrum disorder (ASD) who, as children, may have paced or hand-flapped, had meltdowns, lined up toys in a precise order, or otherwise displayed pronounced characteristics of ASD. Later, as they developed, matured, and received the benefit of interventions, these more obvious signs may have faded, to be replaced by more subtle traits. 1 2 3 As adults, these individuals may enter college, join the workforce, or become involved in an interpersonal relationship with what is sometimes called an "invisible disability" -- a disability that, without self-disclosure, may not be recognized by others.

Like individuals with diabetes, depression, or other invisible disabilities, the adult with high-functioning ASD may face the tough decision: to tell or not to tell? In this article, we discuss the potential benefits and the inherent risks that go hand-in-hand with self-disclosure of ASD in different situations.

Disclosure: Pros and Cons

Every disclosure decision involves a careful weighing of pros and cons. Sharing information about an ASD may help people appreciate the challenges a person on the spectrum faces and the extra help they may need. It may increase empathy and smooth the way forward. It may also result in a negative or prejudiced reaction that makes everything harder.

Of course, not disclosing can carry its own risks. How will quirky behaviors or responses be interpreted in the absence of solid information about ASD? Will a person be viewed as intentionally rude when he was just being honest-without-a-social-filter in the way people with ASD often are? ("You sure have gotten fat.") Will a repetitive behavior be viewed as evidence of an intellectual disability or some kind of emotional instability when this isn't the case? Even a little bit of rocking in your chair, or frequent pacing, can look strange, signaling mental illness or some other impairment to observers. Is it better to give the explanation that's right, and with a dose of education, than to let assumptions that may be very negative flourish in a vacuum?

One key element of any disclosure decision is a realistic appraisal of how a person with ASD appears to others in whatever context. Does a young adult believe she can function in a specific situation without help, and that others won't view her in a negative light due to any ASD-associated behaviors? Is she correct in this belief? A trusted friend, relative, or therapist may need to help her evaluate how she is perceived, and to what degree disclosure is optional.

In her book Cognitive Behavioral Therapy for Adult Asperger Syndrome, 4 Valerie L. Gaus discusses several additional factors people may want to consider when exploring the option of disclosing their ASD. The question is not only whether to disclose, but how much to disclose. To arrive at a decision involves analyzing the individual's goals for disclosure, as well as understanding the many possible outcomes -- positive and negative.

The book suggests that the individual explore the following questions:

  • Why do you want this particular person to know about your diagnosis? Would disclosure possibly improve a professional relationship? Or could it deepen understanding and intimacy in a personal relationship?
  • How do you think disclosure will improve your interactions with this person? Without thinking through this goal, the individual is less likely to achieve the desired effect.
  • Are you prepared to ask this person to support you in a different way because of this new information? If so, can you be specific with the person about what you need? For example, if the individual hopes that an interpersonal problem will improve with the disclosure, it's important to be able to explain specifically how the person should use the new information. The other person may be unsure about the purpose of the disclosure or how he or she can help.
  • What are the risks of disclosing to this person? If it's someone the client doesn't know well, such as a coworker or employer, anticipating the reaction can be difficult. Exploring this question can help the individual plan for the possibility of a negative or confusing reaction.

We now take a more in-depth look at disclosure in three contexts: higher education, the workplace, and intimate relationships.

Disclosure and Academic Support at College

In the United States, many of the children who were diagnosed with ASD in the 1990s are now college bound, 5 and will face a decision about whether to disclose their ASD in order to seek the kind of academic support they used to receive as part of an Individualized Education Plan (IEP).

As they transition to college, students with ASD not only face the challenges typical teens do, but must also become their own advocates. They do so at the same time the rules have just shifted. The law which entitled them to protections and services during their elementary, middle, and high school years no longer applies. 6

From ages 3 to 21, the Individuals with Disabilities Education Act (IDEA) mandates school districts to identify children with special needs and provide appropriate educational services. 7 However, in adulthood, which begins before 21 if a child graduates and leaves the school system at a younger age, the protections of IDEA end. Instead, protections are provided by two civil rights laws: the Americans with Disabilities Act (ADA) and Section 504 of the Vocational Rehabilitation Act. 7 These laws are designed to protect individuals with disabilities from disability-related discrimination and to ensure that "students with disabilities not be denied access to appropriate services or supports that may be necessary to meet their needs or would be available to students without disabilities." 7

One of the key differences between the protections of IDEA and the civil rights laws is a shift from "entitlement" to "eligibility." To access the assistance of a state's department of disability, a vocational rehabilitation program, or other services as an adult, a person must prove eligibility according to the rules and requirements of that program. The same is true when an adult wishes to access supports at college. 7

Basically, there are two main paths:

  • A student can decide not to tell the school anything about his or her ASD officially, and then manage without overt academic support. In this case, there will be no special help provided to accommodate the student academically. Of course, he or she can still access the kinds of help that all students can, like counseling, tutoring, or taking advantage of services or programs that make class notes available. They might also disclose on a case-by-case basis to a specific professor, teaching assistant, or whomever they felt would understand them or work with them better if they knew.
     
  • The other choice is to disclose formally. Generally, a student with an ASD or other disability will bring evidence of his or her diagnosis to an Office of Disability Services on campus. This office will review the student's documents and, if the student is determined to be eligible, help to arrange academic accommodations for the student, such as additional time for taking tests, a quiet place to take tests, or special seating in class. What is provided will depend on the college and the actual needs of the student, which will differ depending on the student and the type of class. As a person who is open about his or her ASD, the student can hope for some understanding on the part of professors and teaching assistants. Whether to disclose more broadly is a separate decision; some may keep their ASD hidden from fellow students, while others may speak openly as a person with ASD, perhaps even sharing the perspectives of people on the spectrum in class and on campus.

Disclosure in The Workplace

Disclosing an ASD to a college or university is relatively straightforward. At least an Office of Disability Services usually exists, and helpful accommodations for learning can generally be arranged. The world of work, however, is much more challenging terrain for those with disabilities, hidden or otherwise. 8 For example, only 35% of people with disabilities who took part in a 2004 Harris Survey reported being employed full or part time compared to 78% of nondisabled people. Of employed people with disabilities, 22% reported they had faced job-related discrimination. 9

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. 10 11 Although ASD is a developmental disability, it does appear in the same psychiatric manual as conditions like depression and schizophrenia, 12 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." 13

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. 14

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. 7

If a person is going to disclose in the workplace, one important consideration is the timing. 8 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 study, 15 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. 8 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. 16 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. 8

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. 17

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.

Disclosing in Interpersonal Relationships

If disclosure is a complex decision in college and at work, it is even more so in significant personal relationships. Casual acquaintances probably have no need to know, but what about someone a person with ASD hopes to befriend or date? Is it better to be up front about having ASD, or to wait until a relationship begins, and then explain that this or that trait is due to ASD? There are cases where adults with ASD are meeting each other in social or support groups for people on the autism spectrum and disclosure is not necessary; in fact, a shared experience of ASD may be part of a friendship's foundation. But what about relationships with "neurotypicals"?

"Creating a hard and fast rule for whom to disclose to is practically impossible," writes Stephen Shore. He goes on to say that determining the effect of disclosure can be especially challenging for an individual with autism since they find it difficult to decode data from social interactions. How well will the person be able to "read" the other person's reaction to his or her disclosure?

Situations will vary, partly based on how much someone is still affected by their ASD. Even those who are very high functioning may need to "let their ASD out" after escaping the restrictive environment of classroom or workplace, which means they may need a different level of understanding from roommates, friends, or a girl- or boyfriend. (Someone who has managed not to pace or rock or talk about their favorite topic all day may need to do all those things once they get home.) In addition, forging a meaningful relationship with a friend or lover may require a different level of honesty.

As a disclosure decision is approached, some external feedback and guidance may be required, whether from a trusted family member, a friend, a support group, or a therapist. If a potential romantic relationship is important to a person, for example, and they want to be genuine, how can they best go about revealing their ASD? What are they hoping for, and can they be specific about the understanding they seek?

Creating a More Welcoming World

It is important to remember that all of these very individual decisions about disclosure take place in a social context. People on the autism spectrum may have specific barriers to overcome when it comes to finding understanding. For one thing, there are contradictory and confusing stereotypes of ASD that may color the reaction of others to disclosure. From a non-communicative child rocking in a corner, to a Rain Main 18 autistic-savant, to a quirky Asperger's genius with a photographic memory, the images that spring to another's mind when a person says "I have autism" can be very distorted. There may be a lot more education that has to be quickly and diplomatically done than if a person had announced "I have dyslexia" or "I have arthritis."

Individuals with ASD and all of those who care about them must continue to educate the public about ASD, including the gifts, talents, and wonderfully unique personalities that can be part of it. We should also support any initiative that lessens the stigma not just of people with ASD, but of people with any disability, especially those involving mental illness. Not only may people with ASD find themselves lumped in that same basket by the general public, but many individuals on the autism spectrum also suffer from co-occurring conditions like depression or anxiety which do fall in that realm.

There are efforts underway to lessen the stigma associated with mental illness, and to put them on a par with physical illness, which can only benefit people with ASD. "Mental illness is just part of the human condition," says actress and advocate Glenn Close, noting that it is something people should talk about as openly as cancer or diabetes. She has played an active part in a new series of public service announcements, which feature her and her sister with bipolar disorder, to make this very important point: For further information, read this online article.19

Meanwhile, the concept of neurodiversity, which has been championed by adults with ASD, challenges the notion that anyone should face discrimination or stigma just because his or her brain is wired differently. 20 As such beliefs spread and gain traction, it is our hope that the decision to disclose becomes easier for future generations of people with ASD.

Also read IAN article ASD Diagnosis: What Do We Tell the Kids? for a discussion about the issues parents face in deciding when and how to tell their child about his or her ASD.

Additional Resources: 

References: 

  1. Howlin, P. (2004). Autism and Asperger syndrome: Preparing for adulthood (2nd ed.). New York: Routledge.
  2. Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., et al. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735-1747. View Abstract
  3. McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to adolescence in autism. Journal of Child Psychology and Psychiatry, 46(4), 401-408. View Abstract
  4. Gaus, Valerie L. (2007). Psychoeducation and orientation to treatment. In Cognitive-behavioral therapy for adult Asperger syndrome (pp. 120-131). New York, NY: The Guilford Press.
  5. VanBergeijk, E., Klin, A., & Volkmar, F. (2008). Supporting more able students on the autism spectrum: College and beyond. Journal of Autism and Developmental Disorders, 38(7), 1359-1370. View Abstract
  6. U.S. Department of Education, Office for Civil Rights. (2007). Students with disabilities preparing for postsecondary education: Know your rights and responsibilities. Retrieved June 15, 2010.
  7. Organization for Autism Research. (2006). Life journey through autism: A guide for transition to adulthood. Retrieved June 15, 2010.
  8. Madaus, J. W. (2008). Employment self-disclosure rates and rationales of university graduates with learning disabilities. Journal of Learning Disabilities, 41(4), 291-299. View Abstract
  9. National Organization on Disability. (2004). Landmark disability survey finds pervasive disadvantages. Retrieved June 15, 2010.
  10. Stuart, H. (2007). Employment equity and mental disability. Current Opinion in Psychiatry, 20(5), 486-490. View Abstract
  11. Stuart, H. (2006). Mental illness and employment discrimination. Current Opinion in Psychiatry, 19(5), 522-526. View Abstract
  12. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington, DC: Author.
  13. Young, E. (2010, January 15). N.J. targets autism discrimination, creates new statewide registry with new laws. Retrieved June 15, 2010.
  14. Petrila, J. P. (2009). Congress restores the Americans with Disabilities Act to its original intent. Psychiatric Services, 60(7), 878-879. View Abstract
  15. Pearson, V., Yip, N., & Lo, E. (2003). To tell or not to tell: Disability disclosure and job application outcomes. Journal of Rehabilitation, 69(4), 35-38.
  16. Baldridge, D. C., & Veiga, J. F. (2001). Toward a greater understanding of the willingness to request an accommodation: Can requesters' beliefs disable the Americans with Disabilities Act? Academy of Management Review, 26, 85-99.
  17. Shore, S. M. (2002). Disclosure for people on the autism spectrum: Working towards a better mutual understanding. Asperger's Digest. Retrieved June 15, 2010.
  18. Molen, G. R. (Producer), & Levinson, B. (Director). (1988). Rain man [Motion picture]. United States: United Artists. View Information
  19. Escherich, K. (2009, October 21). Glenn Close and family tackle stigma of mental illness. ABC: Good Morning America. Retrieved June 15, 2010.
  20. Harmon, A. (2004, May 9). Neurodiversity forever; the disability movement turns to brains. The New York Times. Retrieved June 15, 2010.
  21. Hane, R. E. J., Sibley, K., Shore, S. M., Meyer, R. N., Schwarz, P., & Willey, L. H. (2004). Ask and tell: Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company.
These archived articles were originally published as part of the Interactive Autism Network (IAN) research project. 
The project is closed and no longer accepting participants.

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