By Elise Wulff, MEd
Senior Manager, Consultation Services
Introduction to Disclosure:
We most often use the term ‘disclosure’ to describe when an individual shares a diagnosis, such as autism, with someone for the first time. For young neurodivergent children, parents or caregivers typically handle disclosure conversations. As individuals age and move on to activities such as post-secondary education or employment, they increasingly find themselves in situations where they must manage the disclosure conversation independently.
Disclosure is a complex topic and one that cannot be captured in a single article. However, there are a few key considerations that can provide a starting point for those thinking about disclosing - as parents or caregivers or as the neurodivergent individual.
Things to Consider:
- Disclosure Often Occurs Before Labels: Information about oneself is often shared through behavior, choices, and communication long before sharing a specific label. For many neurodivergent individuals, visible indicators of their neurodiversity, such as scripting, stimming, unique social or motor behaviors, or areas of exceptional expertise, may have already disclosed their condition to those around them. This suggests that sharing a specific diagnosis is only one form of disclosure and not necessarily the first and only.
- Disclosure Is a Choice, Until It Isn’t: Individuals should be able to share personal information when they feel ready. However, certain situations necessitate disclosure to access rights and protections under laws like the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). For example, a child attending an Individualized Education Program (IEP) meeting at age 14 or an employee requesting workplace accommodations may be required to disclose their diagnosis. Taking a proactive approach to disclosure can help maintain a sense of control over when and how it happens.
Tips for Disclosure:
- Schedule the Meeting:
- Disclosure conversations can be anxiety-provoking.
- Scheduling a time with the person (manager, teacher, or otherwise) ensures you know when and where the conversation will happen.
- This approach allows time to prepare and plan your schedule to make the day as supportive as possible, such as choosing a time at the beginning or end of the workday when you can best be present or access breaks.
- Provide Background:
- Explain areas where you experience success and challenges in a given context (e.g., work, school, relationships).
- Prepare specific examples to help the person understand your situation better.
- Share Diagnostic Language:
- After providing background, share your specific diagnosis.
- This could sound like, “I am sharing this with you because I am autistic,” or “I wanted to meet with you and give you this information because I have ADHD.”
- Presenting your diagnosis after explaining your experiences frames it as a unique part of who you are rather than all you are.
- Suggest Action:
- If you need further support, propose tools or accommodations to help overcome challenges, or possibly allow your strengths to be better utilized.
- Examples of self-advocacy include requesting visual aids or asking for more processing time during meetings.
- Note that requesting "Reasonable Accommodations" in the workplace involves a collaborative process between employee and employer.
Preparation for Disclosure:
- Consider asking a trusted support person to help you prepare or role-play the conversation.
- While you cannot control the response of the person hearing your disclosure, you can prepare yourself to make the conversation an empowering opportunity.
Disclosure is a complex and personal process that varies for each individual. By considering these key points and preparing adequately, individuals can navigate disclosure in a way that feels right for them, potentially fostering understanding and support from those around them.