Long Island Behavior Analysis Conference

Navigating Neurodiverse Relationships: Disclosure and Self-Advocacy

If you are an adult who has had a longstanding diagnosis of ASD or a newly diagnosed individual, then you probably grapple with these ongoing decisions:

  • If and when to disclose your diagnosis to others
  • The pros versus the cons of disclosure
  • How to go about sharing this information with others
  • What do you do after disclosing your diagnosis to others?

The reality is that diagnosis disclosure is a component of navigating neurodiverse relationships across domains of life: with family, friends, romantic partnerships, coworkers, supervisors, etc. Engaging in diagnostic disclosure is a step toward effective self-advocacy and increasing a shared understanding of your needs and unique ways of processing the world around you; however, it can also be intimidating and connected with emotions which means that being prepared with a framework of approach is useful.

Katherine Cody, PsyD

Katherine Cody, PsyD

WHY and WHEN to Disclose

WHY: Research indicates that first impressions of adults with ASD improve when diagnostic disclosure occurs (Sasson & Morrison, 2019). This finding suggests that neurodiverse relationships improve with provision of disclosure, and the potential to forge new relationships increases when disclosure happens. Disclosure provides opportunity for others to develop an increased understanding of strengths, challenges, needs, and processing differences. When disclosing, it is imperative to be very clear about the purpose of the disclosure – DEFINE A GOAL. Ask yourself what you are hoping to get out of disclosure. Is it to obtain understanding or support? Link what you disclose with this defined goal.

WHEN: There is no clear “right” time to disclose diagnosis. The tricky part about this is that there is no clear rule for which circumstance indicates which kind of disclosure, and self-awareness is needed to guide the disclosure process.

  • Up Front Timing: Many adults with ASD feel that they do not want to be in relationships or work environments that do not openly support their ASD, so using this up-front approach is right for them. Examples include before meeting someone for an interview or a first date; however, this approach is only useful for people who embrace an approach of putting all the information out there from the beginning and with awareness of the “why.”
  • Wait Until Someone Knows You Better: There are other times when it is appropriate for disclosure to occur as someone is getting to know you or after getting hired and during onboarding of a job with a human resources department and requesting specific accommodations.
  • Partial Disclosure: Disclose a need (Ex: “I am a better employee when tasks are assigned to me in writing versus only aloud.”) without disclosing the diagnosis itself. Use this for specific situations and circumstances in which advocating for a need is present.

PROS & CONS of Disclosure

PROS:

  • Even if the other party does not have prior knowledge and understanding of ASD, disclosing diagnosis is an opportunity to increase this awareness of ASD.
  • Diagnostic disclosure is an opportunity to communicate with others to form a shared understanding of your unique needs, differences, challenges and strengths.
  • If you do not share what your needs are and why, then people do not realize that there are needs to be fulfilled; therefore, sharing your needs is a means of self-advocacy that initiates the opportunity for your needs to be met.
  • The more that diagnostic closure happens, the more the stigma and misperceptions about ASD continue to be challenged to reflect a more valid and reliable picture of what it means to be an adult with ASD.

CONS:

  • Research in college settings has found that neurotypical peers do not always understand ASD (Frost, Bailey & Ingersoll, 2019). This finding suggests that diagnostic disclosure might not always yield the desired results if the other party lacks understanding and awareness of ASD.
  • There is no way to reliably predict the other party’s response to your disclosure. When people lack awareness, they may meet this information with an attempt to understand and be supportive; however, they may also respond with dismissal and disbelief (“No way, you’re too ________ to be on the autism spectrum!”). This kind of reply can feel invalidating and frustrating.
  • For people who lack understanding, their behavior in response to disclosure might reflect misperceptions of what it means to be on the autism spectrum. For example, a person might respond by treating you in a more childlike manner based on these misperceptions.

HOW to Disclose Diagnosis

Liane Holliday Willey (2004) explains that she “chose long ago to have fun with my Aspieness” (p. 181). Liane details several approaches to diagnostic disclosure including hosting a gathering that is an ASD-friendly atmosphere and incorporates sensory awareness; focusing on the facts and communicating the information with this emphasis; use of various forms of writing; or finding an identified ally to disclose the information on your behalf. The takeaway from Liane’s suggestions for disclosure is that use of self-awareness and insight regarding your needs, communication style, and knowledge of the other party with whom you are engaging in disclosure are all elements that determine how to go about disclosure. Again, there is no one size fits all, but there are a range of options that might work for reach person. Additionally, as Becca Lory indicates, “the ‘how’ changes based on the nature of the relationship; you wouldn’t disclose diagnosis the same way to a family member as you would to a coworker” (personal communication, December 6, 2018). This is challenging, because there is not a single defining rule or single route to take in terms of how to disclose diagnosis.

AFTER Disclosure – Now What?

As Becca Lory, an adult autistic self-advocate, reports, many Aspies engage in the disclosure process, but then lack understanding or awareness of what to do next. Becca recommends the following steps:

  • Remember to Follow Up: You cannot just drop the information and leave it there. The point of disclosure is to access understanding or accommodations, so follow up is required.
  • Actually Follow Up: Request your accommodations. Share materials to educate.
  • Answer Questions: Be open to answering questions about your experience of being on the spectrum. A person can do research, but that does not necessarily mean that they will understand YOUR SPECIFIC needs, challenges, differences, etc.
  • Do the Self-Reflective Work: Disclosure is not useful if you have not done the internal work to know what your needs are. Internal work can be different for each person; for some it is meditation, for some it is therapy, for some it is exercise, and for some it is a combination of many different things. But without doing the work, effective self-advocacy cannot occur, because you do not know what to ask for!
  • Don’t Take it Personally: Disclosure of diagnosis is often new information to that person, and they need time to take it in and respond. It is usually not about you! Keep this in mind as you are going through the disclosure and self-advocacy process.

Ultimately, diagnostic disclosure is a significant component of navigating neurodiverse relationships and doing so has potential to result in benefits for all. Keeping these steps in mind as a starting point will assist with getting your needs met, improving relationships, and more accurately distributing information about ASD to the community at large.

Dr. Cody is a Professional Advisory Board Member for AANE. She can be found via her website www.spectrumpsychservices.com or via e-mail at drcody@spectrumpsychservices.com.

References

Frost, K. M., Bailey, K. M., & Ingersoll, B. R. (2019) “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum. Autism in Adulthood 0(0). http://doi.org/10.1089/aut.2018.0057

Sasson, N. J., & Morrison, K. E. (2019). First impressions of adults with autism improve with diagnostic disclosure and increased autism knowledge of peers. Autism23(1), 50–59. https://doi.org/10.1177/1362361317729526

Willey, L. H. (2004). Disclosure and Self-Advocacy: An Open Door Policy. In Shore, S. (Ed), Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum (pp. 177-191). Shawnee Mission, KS: Autism Asperger Publishing Company.

Have a Comment?