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The Personal Journey of Disclosure and Finding Support
One of the first questions people with autism ask after a new diagnosis is, “Do I need to tell everyone?”
The answer to that question is simple: No.
With caveats. There are always caveats.
In the United States, there are no rules or laws that require one to disclose an autism diagnosis. This is covered by HIPAA, the Health Insurance Portability and Accountability Act, which does two things. If you disclose to an employer, that person cannot share your disclosure with anyone else and can’t use it against you. It also means you don’t have to share unless you need some kind of accommodation, and the accommodations are protected under law.
However, the question of whether or not to disclose outside of a professional or academic environment (also protected by HIPAA) is a personal one.
When I’m asked this question, my answer is: it depends.
It depends on who you want to tell, who you feel like you need to tell, who would benefit from knowing, and who will be most supportive. The list of potential recipients and reasons is pretty long and broad.
When I was diagnosed, Erin and I decided we weren’t going to hide my autism diagnosis. We also didn’t feel the specific need to share it with everyone and as a result, when it came up, we were direct and open about it.
Back in those days, people we told were within the varied communities of which we were members. As we were still religious and attending church, we let people in our congregation know.
I shared it with my parents and siblings (more on this) and Erin let her parents know. When it came to the workplace, and as this was relatively new and what I didn’t know or have experience with was pretty much everything, I disclosed to coworkers who had to navigate my often dismissive attitude and the intensity with which I would tackle projects.
As some aspects of my job started to fall apart, I let my immediate manager, the site VP, and a member of Human Resources know what I was dealing with. Of these people, the one from HR used it as a weapon to attack me, as though I was making an excuse rather than explaining what had changed and how I was attempting to improve my work and workflow.
Disclosing in Professional Settings
As a teacher and substitute, I let my students know, mostly because I wasn’t going to get involved in the drama that exists around large concentrations of people and partially because I was still trying to figure things out and having people ask questions caused me to look for answers. While “I don’t know” is and always will be a reasonable answer, not knowing forever, for me, isn’t okay.
Disclosing to Family
Telling my parents and siblings led to some pretty dismissive behavior. While I believe (or want to believe) my parents will accept this in their grandchildren, they are equally as unlikely to accept it in me. What I ended up telling my siblings is that now that I had some answers to some of my questions, our relationships needed to change, and if they wanted a relationship, I would put in the same amount of work as they did. Eventually, though for many different reasons, this also applied to my parents and as a result, I don’t hear from or communicate with my parents and most of my siblings.
Advice for Disclosure
Which leads to what I tell people now.
If you feel the need to share your diagnosis with people, choose someone you know and feel like you can trust, someone who might benefit from knowing, and tell them. See what happens with someone who is supposed to care about you. Find out how they react and the questions they ask.
What will happen is that you will begin to figure out the relationships you have and how important you are to some people. The ones who matter will support you and while it may be hard (it will be hard), they will do what they can, within their limitations, to support you.
It’s here that things get a bit important because these are also the people you’re going to ask for help in social situations, with emotional and non-verbal language. They are the ones to whom you can say, “I want to go, but I can’t tonight because I’m too worn out. Can we reschedule?” (Always reschedule.)
Implications of Disclosure
From this point, you can choose who you tell, but (and this is why trust was included) once you tell someone, you are giving away part of your right to keeping your diagnosis entirely private. People are going to find out. They’re going to mention things, though not always (or even often) with malicious intent. The people in your life are going to start to know no matter what. And that changes things.
Change isn’t a bad thing and while hard, with time what starts out as hard, with practice, becomes easier or, with enough time and exposure, you will be more capable of handling setbacks and people who are being themselves, people who are peopling.
The one truth I know is that whether or not you realize it, autism was a part of your life before a diagnosis and it will be a part of your life after. The difference is knowing and then adjusting what you’ve already been doing to what is now your known reality. Ideally, nothing should really change, except for the need for different kinds of support, but in reality, a label changes people and that’s what you’re trying to understand and work toward a positive outcome within that change.
As opposed to ADA, the Americans with Disabilities Act, which protects one against discrimination.
The law also states the employer has to put in a reasonable effort, which doesn’t always result in getting any real accommodations.
For the record, most of these questions come via Reddit. I moderate r/adultautism and am very active there.