Disclosure 2: Who Needs to Know?

One of the disclosure issues that appeared in a thread over the weekend was the question of who needs to know about a diagnosis of ASD, and when disclosure will make a situation better or worse. Unlike the role of disclosure in discrimination protection in the U.S., there are no specific rules about who to disclose to that are applicable to all people. I'll list my rules, but with the disclaimer they may not be good rules for everyone to follow.

I live in a geographical location that is very accepting of the unusual. So disclosure doesn't result in the kind of stigma that might occur elsewhere. I also don't "pass for normal"--people pretty much know "something" is not typical about me though they may not be able to name it. So for me disclosure tends to improve my interpersonal interactions enormously because people then aren't assuming things like that I am dishonest (cue from lack of eye contact) or rude (cue from idiosyncratic communication). I am comfortable with my identity as an autistic person. So communicating "I'm autistic" isn't any bigger a deal to me than communicating, "I'm Italian-American." Similar context is not shared by all people on the spectrum.

From within my context, these are my rules:

1. Full disclosure to friends, family, and in situations where full disclosure is necessary to access services, accommodations, or discrimination protection.

2. Full disclosure if the situation is of survival-level importance or serious problems could result for myself or others from mismanagement of the situation. Examples: paratransit drivers (yes, the photo with this post is my hand and my notebook), law enforcement, medical personnel, or insurance or financial institutions where I need to explain why I am requesting the institution speak with my representative instead of me.

3. Full disclosure if I will be interacting with the person multiple times over a long period of time. For example teachers, co-workers, and the family veternarian.

4. Need-to-know limited disclosure to meet short-term needs in a specific interaction with a stranger. This means I will disclose limited information about my disabilities specific to an interaction. For example, strangers often go blah blah blah at me with their mouths too fast for me to process. So I advocate for my needs with scripts like, "I have virtually no short term memory for what I hear, could you please give me one idea at a time and wait while I write each down?" This partial disclosure I've found to be important because otherwise the person may think I'm just being difficult. Letting a person know there's a medical necessity behind my request makes the person much more pleasant and accommodating. But all they need to know is the exact difficulty I'm having, not the broader scope of my diagnosis--it's important in these situations to keep things as simple as possible.

5. No disclosure: To any person that falls outside of the above situations I don't disclose. Like if I'm at the bus stop and someone asks me what time the bus is coming and it takes me 3 minutes to figure out and communicate the answer, I don't preface it with "that took me a long time because I am autistic," I just give the answer and leave it at that. Disclosure to one-time strangers in non-critical situations I've found to be just confusing TMI that makes things harder for me (and others) not easier.

In all of these cases, I have scripts or communication cards (like the notebook page pictured) that I have developed to assist with the various types of disclosure.

When I was first developing these rules and scripts, I asked the therapist I was working with whether people would stigmatize me more if they knew the name of my disability. She said, "Anyone who will stigmatize you because they know the diagnosis would also stigmatize you if they didn't know the diagnosis." Disclosure may improve interactions with people who are open to understanding, but disclosure will not necessarily improve interactions with those who are truly bigoted.

The strong caution I give is that some people (including me) may find a disclosure to the wrong person at the wrong time to be problematic or even potentially dangerous. Each individual's situation will have to be taken from within its own context when developing safe rules for who to disclose an ASD diagnosis to. There is no "one size fits all."