Content note: in this post I am going to refer to the process of telling someone about your disability as “coming out”. I recognize that this language refers to the LGBT community and here I am using it metaphorically to point at a similar experience to increase understanding. I also recognize that there are problems with referring to all experiences of opening up about your identity as “coming out”, however the common understanding of the language means it’s a very useful move. I’m 100% open to criticisms and would love to hear your thoughts.
This will be a multi part post due to the many factors and ways of “coming out”.
A couple of years ago, I sent my mother an email. We weren’t at a great place at the time, so it was short and sweet: “I wanted to let you know that I’ve been diagnosed with autism. I’m not sure exactly what that means, but I thought it was important for you to know. If you have any questions I’m happy to answer them.”
This is not how you should tell your family important information about yourself.
When you receive a diagnosis like autism, or another disability it’s hard to know when to tell people, how much to tell them, what words you should use. Do they even need to know at all? This is your comprehensive guide to coming out disabled.
In this first post, we’re going to talk about who and when to tell, and talk about some of the pros and cons of coming out.
Who Should I Tell and When Should I Tell Them?
For the most part this is going to be a guide to disclosing an invisible disability because when you are visibly disabled you don’t get to choose when to have these conversations. However you can use these same kinds of guidelines to decide how much to disclose and when to have conversations about accommodations.
There are a few different types of people you may want to disclose to: friends, family, coworkers, acquaintances, teachers, landlords, and romantic partners (who could fit into some of these other categories but if you’re dating you might want to consider some specific things).
The one group of people I suggest you disclose to immediately are your medical professionals because they need to know what’s up with you.
When it comes to everyone else here’s what I would consider: what do you hope to get by disclosing? If you’re looking at a work, housing, or school setting, disclosure typically happens when you’re looking for accommodations. If you’re really struggling and need help, I would push more strongly to disclose. For family, friends, and acquaintances, one motivation to disclose is often to ask for additional help and support, but sometimes it’s also simply because you want validation and understanding, or because you want others to understand why you behave the way you do.
You may also want to “come out” for reasons similar to LGBT folks: it’s an important part of your identity and you don’t want to feel like you’re hiding or unable to talk about the things that affect your life and those around you.
Finally, it is possible that you want to increase awareness by disclosing. This is a pretty different goal from the others, and if that’s your goal, then it seems that there are fewer barriers to you disclosing as you’re willing to put in the time and effort to educate and fight stigma. We’ll get into that a bit in the next post.
Once you have identified what you hope to get by disclosing it’s important to consider whether you think disclosing will actually allow you to reach those goals.
Let’s start with work, housing, and school. Has the institution demonstrated that they’re willing to make accommodations? Is there a policy in place? Do you often hear supervisors or professors making ableist comments, or do they show some understanding of disability? These are the kinds of questions to ask yourself. The less that an institution has demonstrated that they’re willing to make accommodations, the more likely you will have to put in a lot of time and energy to reach the goals you had in disclosing. You may still wish to disclose, but you’ll want to plan ahead for a potential fight and gather resources first (ADA citations, potentially even a lawyer).
On the other hand, if you’ve got an institution that is vocal and open about providing accommodations, you may want to disclose your diagnosis preemptively. Especially in the workplace it can be good to let HR know ahead of time that you have a diagnosis so that if and when you ask for accommodations it’s already on file.
While disclosing at work and school can be challenging, it seems to be a fairly simple calculus to me: will I receive the accommodations I want from this? Even if the accommodations aren’t formal, it may be giving your boss a heads up so that they understand your needs as an employee.
Where things get a lot more complicated is with family, friends, romantic partners, and acquaintances. In many cases, you aren’t thinking in the same “I want to achieve this goal” way, but you wouldn’t be disclosing if you didn’t think it would improve things in some way. So think a bit about what reaction you would like from the person you’re disclosing to. Do you simply want them to know more about you? Do you want them to be a support person, and if so do you have ideas or examples of how they could help? Would you like them to be someone you can vent to? Or do you want them to be more understanding of behavior that is motivated or caused by your disability?
You can then evaluate how likely it is that you’ll be able to reach each of those goals. In some cases you might know that a friend is unlikely to be sympathetic. They may have a pattern of dismissing disabilities, or maybe they’ve been very unsympathetic when you’ve asked them to change behavior in your past. You can use these kinds of questions to determine if disclosing is likely to improve your relationship with someone or hurt it. I tend to think that if you’re close enough to someone that your disability is going to affect your relationship with them, it’s good manners to let them know about it. If you feel comfortable before that, or if you have a good gut feeling about someone, go for it! Some people think there’s such a thing as disclosing too early but I’m not one of them.
On that note, let’s talk about dating.
Most people agree that if you want to date someone in a serious fashion there is a point at which you should disclose if you’re disabled. We’ll get into the how next week, but for now let’s talk when. Honestly there is no formula. I disclosed to all potential partners before we even went on a date, but it’s true that this might scare some people away (I personally think if they can’t handle me word vomiting about my depression I don’t want to date them). However most people think somewhere between date 3 and getting exclusive/serious. Your mileage may vary.
I would suggest that if you’re at a point where you’re calling each other “boyfriend” or “girlfriend” or a similar word, and they don’t know about something that affects most parts of your life, you may have waited too long. What’s good is that this is something you can always fix! You can disclose any time! Even if it means having a conversation about why you didn’t come out earlier, it’s better than keeping it hidden forever.
Why Wouldn’t I Want to Disclose?
So why am I writing this post if all these rules are so clear (ha)? Well because there are many things that can influence people NOT to come out. If you feel an impulse not to disclose because you feel uncomfortable, that is entirely valid, and no one has a responsibility to come out. However it can be helpful to consider what is actually motivating that discomfort and whether it’s reasonable or not.
Here are a few reasons that people choose not to disclose:
You are concerned that the person you disclose to will judge you, treat you differently, or misunderstand the diagnosis. This feels really awful, especially if they invalidate it, say it’s fake or you don’t have it, or belittle you in any other way. It is possible that this can happen and if you suspect someone might do this to you if you disclose PROTECT YOURSELF. No one deserves that shit.
However it’s also possible that you’re concerned that disclosure will be a long and difficult process. This is honestly true more often than not. When you come out, it’s not enough to just say “I’m autistic”. More often than not it means educating someone about what the diagnosis is, what it means for you, how they can help, and opening a channel for communication going forward. It’s something you keep doing over time, and can end up being a lot of work. It’s 100% valid if you don’t feel you have the spoons to educate someone at any given time, however I will say that some work on the upfront can save spoons in the future, so if you have a hunch that someone just needs to learn in order to be more helpful/understanding/supportive, it might be a good idea to brainstorm when you’ll have the energy to disclose and talk to them.
It’s surprising how often people are more willing to be understanding when they understand why you’re doing something.
Finally, some people are just private. That’s ok. You don’t have to share personal information about yourself unless you want to. However I would encourage you to remember that sharing the information can be very helpful and also decrease stigma.
Why Would I Want to Disclose?
With all that it seems like there might not be reasons to disclose. We have discussed some already, like gaining accommodations and support, but there are two that I want to focus on here.
First, every time you come out, you make it easier for the next person. Every time you educate, you increase the likelihood that another person with your diagnosis will be met with empathy and understanding rather than judgment. You aren’t required to take on this work, but it’s good, fulfilling, important work if you choose to do it.
Additionally, it can be incredibly important to disclose because it makes your life easier. Sometimes it’s not right away, and sometimes it’s not even about getting more support. Sometimes it’s as simple as being able to say out loud “I’m autistic” with ease and comfort. It’s about being yourself and cutting down on the amount of time that you have to mask and hide. Forcing yourself to act in unnatural ways takes a major toll on anyone. Being open about what you’re going through and who you are, behaving in the ways that are natural to you, and feeling comfortable to let down your guard does wonders for mood and ability to take on bigger challenges.
Coming out gives you space to relax. When people are supportive of your coming out, it’s incredibly validating. The gay community has talked before about how damaging it is to someone’s identity to live in the closet. Hiding your identity hurts no matter what kind of identity it is, and all of us deserve to be seen and recognized for ourselves.
Finally, and in my opinion best, is the fact that coming out can help you find other people who are like you. By talking about my diagnosis I have made some of the best friends in my life, people who understand and who are also autistic. It takes vulnerability, but claiming the label helps you find your people.
Look forward to some scripts and ideas for how to actually come out in part 2!