I have “the kind of autism” you don’t think I have until I tell you I have it.
When I tell people I’ve been diagnosed with ASD, their responses can be anything from “oh, that makes sense now”, to “there’s no way, you seem so normal!” Although, my personal favorite was that one time someone asked, “are you sure?”
After my mom talked to me more about my autism diagnosis in high school, I would sometimes share this information with people in my friend groups and extracurricular activities. I learned the “hard way” that not everyone will have the same response, and furthermore, not everyone would meet it with kindness or understanding.
It only took a couple of bad experiences for me to decide I didn’t want to share that information with people who didn’t absolutely need to know. I even had a system for determining who “needed to know”. There were 3 circumstances in which I used to disclose my autism diagnosis. First was medical professionals, not just for obvious reasons, but also because I have an extreme needle phobia, and I knew I needed to be upfront about that so they wouldn’t be surprised by my response. The second circumstance was first responders or other similar authorities. During an interaction with law enforcement, for example, I thought it’d be wise to disclose my diagnosis in case my behavior at any point seemed “suspicious”. Lack of eye contact or nervousness can sometimes cause law enforcement to believe a person has something to hide, when in fact they may just have autism. The third circumstance in which I used to disclose my diagnosis was in social situations wherein others having a better understanding of my behavior would result in an improved outcome. Here’s an example, if I was with a group of people, I’d often try to make unexpected jokes in order to get them to laugh. However, sometimes I didn’t always get a good response to those jokes, or worse, some may have been unintentionally offensive. Disclosing my autism diagnosis would often help mitigate the effects of my behavior.
This system of rules served me well for many years. I was able to protect my own privacy while still being able to advocate for myself when necessary. This system also served as a way to shield me from unnecessary criticism from casual friends and acquaintances. This was something I was particularly concerned about after having a boy stand up and walk away from a date after I told him about my autism.
When I was 24, I received the incredible opportunity to participate in the Netflix series Love On The Spectrum. After the show aired, my information was online and incredibly easy to find. This was something I was prepared for. However, it did make some alterations to my system of disclosing my diagnosis to others.
Because I’ve had so much practice in recent months talking about my diagnosis publicly, I’ve been able to get more comfortable with it. Additionally, the autism community continues to make great strides in increasing social acceptance of autism. As a result, I now share my diagnosis whenever it’s relevant to the conversation or if someone else could gain something positive from knowing I am on the spectrum.
When it comes to someone’s private medical information, I don’t believe there is a “right” or “wrong” answer to how or even if it should be shared with others. Some people are an “open book” and share information freely about themselves. Others are more private and might benefit from developing a system like mine to help them decide if they should disclose their diagnosis.