Putting It All Out There

Posted on July 14, 2018

Have you ever had the experience of telling someone that you have Autism? The reaction I sometimes get is that of “So you’re like Temple Grandin or Rain Man?” Often the conversation ends right there but sometimes they want to know what it is like to have Autism. I find myself trying to explain how it impacts me but often I get the feeling they think I speak for everyone who has Autism. How can I possibly speak for everyone I know who lives with Autism? I think most of us have had this similar somewhat awkward experience of being an “expert” to someone who has little knowledge of people on the Autism Spectrum. I find peoples’ responses interesting since they often talk to individuals on the Spectrum without even knowing it. I think maybe one reason people are curious is that they read about it but don’t get the opportunity to honestly ask questions of someone who has a personal experience living with the diagnosis.

My diagnosis is part of who I am but I wish that it didn’t impact me so much. That I could keep that part of my life private and never needed to explain to people about my diagnosis. It’s incredibly hard for me to trust people enough to tell them about that sensitive part of me and also to trust them not to use the information against me.

I’ve also had less positive experiences in which the person I tell this important information to could care less. They appeared to think my diagnosis was an excuse for why I couldn’t do something, like “if I only tried harder, I could be just like everyone else.” I have also had people say that I “look and act too normally to have Autism.” I find that statement frustrating because I really do struggle a lot and you can’t tell just by looking at someone if they have Autism. I find it a bit odd and I think you might too that they expect us to be so different from them that it would be obvious. It almost seems like they want to have something like “here’s your sign” to make it easier to put people into categories.

Disclosure is a tricky subject and there are whole books written on it. The only advice I would give when disclosing your diagnosis is to ask yourself carefully, “Does this person need to know?” and “Will it make my life better if they know?” “Is this a good person who is able to use the information the way I want them to help me feel more secure in their presence?” and “Is this the right time and place to explain a sensitive topic like my diagnosis?” Every time I disclose, I try to think very carefully about these questions before I do so because you can never “un-disclose” information once you say it aloud to someone.

To be totally honest, I don’t like to tell people about having Autism but people have responded for the most part in a positive manner. Ultimately, my comfort level with my diagnosis effects my willingness to disclose to others. No matter how carefully you consider to disclose/not disclose, you can’t control others’ reactions. If a friend asked me if they should disclose, my advice would be to have confidence in your decision making capabilities and remember, this gets easier with practice.