We all have secrets. Some of them are bigger than others. Sometimes nobody else would ever suspect them. Others are painfully obvious. Autism can be similar. Sometimes we’re good at hiding it, other times we aren’t. For some neurotypicals, finding out we’re autistic comes out of left field; others might have suspected all along. This time around, I want to talk about coming out, or as it’s more traditionally called, disclosure.
Before we start, some context. In a school or employment setting, very few people should know your diagnosis already. The Americans with Disabilities Act (ADA) and Health Insurance Portability and Accountability Act (HIPAA) both have significant privacy protections. While you are free to disclose to whomever you see fit, the only people who should know otherwise are those in the office you sought accomodations from, usually called something like “Disabilities Services Office.” Violating that confidentiality is illegal! For example, when I worked as a teaching assistant, I was given a confidential list of students who needed accommodations and what those accommodations were, nothing else. When I worked at a summer camp for autistic kids, we kept all personal information under literal lock and key, used initials instead of names in all written internal communications, and releasing identifiable information was a fireable offense. Disclosure is your decision and yours alone.
Now that we know our rights, we begin by asking why we want to disclose to someone. Everything that comes later depends on this. There are a lot of potential reasons to share this; here are some. In some of my classes, where the topic matched my special interests, I would let my enthusiasm and curiosity get the better of me, asking so many questions it could interfere with getting through the lesson. When this happened, I decided to inform my professor to reach a mutual understanding. If the executive functioning demands of a class are significant, you may want to reach out for help from the professor. If the social aspects of group projects, including lab work, are overwhelming, that might justify disclosing and asking for assistance. On a less dire note, you might choose to tell a professor you already have a strong positive relationship with, such as an advisor. This can help them better understand you, and they can be someone you can confide in in an academic context.
We then come to the questions we need to ask ourselves before taking action. First, what are the potential gains, and what do you hope to accomplish? We’ve touched upon these in the previous paragraph, but it’s important to have a specific goal in mind, because that will shape how you actually disclose. How well do you know this person, and how well do they know you? This can make the conversation significantly easier or more complicated, as sharing this with someone who already knows you well is much less of a hurdle (and much safer) than someone who isn’t as familiar with you.
What are the potential costs? You need to take this into account before doing anything.
What are the potential costs? You need to take this into account before doing anything. For example, what do you know of what they think about disability and autism? For example, I had a lot of difficulties with one of the professors I was a teaching assistant for regarding how to grade her exams. While disclosing my diagnosis may have helped address our not seeing eye to eye, given her past behavior towards students with disabilities, I did not feel safe doing this. This was absolutely the right decision. Putting extreme cases like this aside, people might treat you differently once they learn you’re autistic. It’s unpleasant, but you need to use what you know about them to seriously consider what might happen, and weigh that against the benefits. The drawbacks and benefits might not even be mutually exclusive.
What happens after? That can vary. Hopefully the person listens, acknowledges you, and you can then get what you wanted from disclosure. They might not even be surprised! That’s certainly happened with several of my grade school teachers I’ve talked to, years after being their student. Sometimes it gets more complicated than that. While outright hostility is unlikely, skepticism mixed with the dreaded “high-functioning” label is a common negative reaction. To make a long story very, very short, functioning labels, even something that sounds like a compliment on the surface, are unhelpful, inaccurate, and harmful. Addressing a specific need can help to combat stereotypes and keep the focus on getting what you want. Remember your professor only sees the you in class; that that will be their perspective. Use this to guide your expectations and plan.
What are your concerns and experiences with disclosure? Join the conversation, and please share us with your friends!