Coming Out Disabled Part 3

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I promise that some day I will write something shorter than a 3 part series, but today is not that day. Instead, today I am going to finish out my series on coming out disabled, with some final bits and pieces you may want to consider when coming out.

The first of these is that when you come out you are in some ways taking on the task of educating people. Note that I don’t say you have the responsibility or you’re agreeing to. You shouldn’t HAVE to. BUt unfortunately if you want people to understand what you’re saying and respect your accommodations, it’s highly likely that you’ll end up doing a lot of education.

So one thing you want to consider when you’re going to bring your family and friends along into the world of disability with you is how much you trust them to educate themselves, how much energy you have to educate them, and what all they need to know. In some cases this can actually be a really cool process; if your loved one is interested, open, and curious, they’ll probably do some research themselves, but ask you about your experiences. Being able to talk openly about your disability can feel relieving and validating. Even though it does take spoons and time to explain stuff, it can also feel like growing closer.

On the other hand, if your loved one isn’t super invested in the process it can be total shit. It’s exhausting when you’re always the one who has to bring up your needs, and since we’re trained to feel like setting boundaries is asking for extra special treatment, you can feel needy or whiny. You’re not. It can feel like an impossible choice to decide whether you want to keep a diagnosis to yourself and try to navigate your needs alone, or disclose and spend time educating and convincing people that you deserve respect and validation. I hear you. It sucks.

What I will say is that in one of those situations you’re not ever likely to get support. In the other, it’s possible people will learn and grow along the way. If you’re uncertain about how family or friends will react, I strongly recommend talking it out with a therapist or someone else you trust, particularly someone who has experience with the people you’re not sure about.

It’s also possible that you have just received a diagnosis, and you’re learning along with your family. In my opinion, it’s great to be upfront when that’s the case, and ask for help in finding resources and services. Sometimes it can be easier to learn about the diagnosis together with your support system, if only because other people prefer to be helpful rather than be educated.

The final concern that I want to bring up here is the possibility that someone else might out you. That sucks. Never talk about someone else’s disability unless you’re certain they are open. But sometimes it happens. I once had an executive director mention that I was autistic to our entire leadership team without asking me. What do you do?

This only becomes a problem if you find out about it, but when you do you have a few options. You can decide to be open and out, answer questions, and live that outness. That’s what I decided to do, because I had no problem being out at work it just hadn’t seemed like the right time yet.

If that’s not an option, you can set a hard boundary: “Yes, I am autistic, but I would prefer not to talk about it. I’d also appreciate it if you don’t treat me any differently because of it.” This won’t necessarily stop people from wondering, or changing the way they act around you, but it might help. You may also want to mention to the person who outs you that you’d prefer they let you decide when to disclose. Honestly if it were me, I might even say that immediately after they out me, because I would prefer for those in hearing distance to understand that it was inappropriate, and it’s not something to be shared further.

Do you have any further questions about coming out about your disability? What was the hardest part for you? What did you learn?

Coming Out Disabled Part 2

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Welcome to part 2 of the Coming Out Disabled series! In part 1 we talked about who you might want to come out to, the pros and cons of coming out, and why you’d decide to do it. Here in part 2 we’re going to get practical: what should you actually say to someone when you come out as disabled? What are some scripts? And how do you manage when it doesn’t go the way you planned?

Formal Disclosures

Let’s start with the relatively simple; formally disclosing. This is disclosing at work, school, or another environment where you are legally protected and want to ask for accommodations.

“Employers are compelled under the ADA to make reasonable accommodations for qualified individuals with disabilities. An accommodation is a modification or adjustment that allows the individual to participate in the interviewing process or to perform the essential functions of his or her job. Examples of reasonable accommodations include providing written instructions, allowing the use of headphones to block office noise, a modified training program, flexible scheduling, etc.”-from Workplace Disclosure

In these circumstances it’s best to stay short and to the point. As we mentioned in the last post you may want to preemptively disclose if you feel that the environment is right. In that case you might say something like “I have autism. In particular I struggle with executive function, verbal instructions, and task prioritization. I don’t need accommodations right now, but I may in the future and would like it on record.”

More common however, is that you need an accommodation and you’re asking for something specific. In those cases it can be very beneficial to plan your actions ahead of time. Brainstorm (alone, with a therapist, with a trusted friend or family member) what accommodation may help you the most. Take the time to decide who you will disclose to: do you have an HR department? Do you feel comfortable disclosing to your direct supervisor? Is your direct supervisor the one who is causing problems, so you need to go to their supervisor?

Choose the person who is a. most effective at getting you the accommodation and b. that you feel comfortable speaking with. You can disclose in person or through email, whatever feels the most comfortable to you. Eventually you will probably want to get any formal accommodations in writing.

The script will probably go something like this “I have autism and because of that I have some difficulty with sensory processing. That means that the noise in the office is incredibly distracting and sometimes painful to me. I’d like to bring noise cancelling headphones as an accommodation.” You may want to provide some kind of brief information about the concern you’re bringing up to help educate your supervisor/teacher/etc.

Remember that accommodations have to be reasonable, so there is the possibility that you may not receive every accommodation you ask for, or your employer/school may suggest an alternative. However if you feel they’re ignoring the ADA you do have options, which we’ll address in part 3.

Personal Disclosures

There is no single script for disclosing to family, friends, and other close people. That’s because when you come out to your family and friends, you’re not just telling them one piece of information. You’re educating them about your entire diagnosis.

Coming out to your family is likely to be a much longer process of education and renegotiation about what you’re capable of and what supports you need. This is where the metaphor of “coming out” is particularly apt: within the queer community, people talk about the fact that you’re never done coming out. You have to keep deciding with each new person how much information to share.

That is also true with disabilities, but there’s an added layer for disabilities: for each new difficulty, need, and support you have to decide how much you want to share. For example you might tell your parents that you’re autistic, and explain that this is why you have struggled with friendships, with an intense fascination for rules, with falling too deeply into certain interests. They accept it.

A couple months later you realize that one of your struggles is with plans that change unexpectedly. Do you tell your parents and ask them to give you advance notice when things might change? What about a couple months later when you realize talking on the phone gives you anxiety and you’d prefer they text?

We’re told that having these kinds of preferences is picky and demanding, so it can become harder and harder to be open and honest the more accommodations you have to ask for. Part of coming out is the self care and self awareness to remind yourself that even if other people don’t accept your requests, they are still valid. You can set boundaries, and you deserve to have those boundaries respected.

My friend Jillian summed it up nicely:

“People are often afraid to disclose cause people might judge them, but I try to remember that the people that would judge me for disclosing are going to be the same ones that will judge me if I don’t disclose and happen to be autistic in a situation. Those aren’t the people I want in my life, or the places I want to be.”

Ok But Really What Do I Say?

Alright, fine, I’ll give you some scripts. To start out with, it can be nice to disclose to someone close to you when you’re not asking for anything. You might say something like:

“Hey mom/dad/friend/partner: I wanted to let you know something pretty important. I recently received an autism diagnosis/am autistic. There’s a whole lot of information about autism out there, but I want to give you an idea of what it means for me.

My biggest concerns are (fill in: sensory issues, executive dysfunction, eye contact etc. with a brief explanation of any technical terms and one or two concrete examples). If you’re interested, I can definitely tell you more about it, or give you some examples of how it affects my relationship with you. It might mean that I’ll ask to do things a little bit differently in the future and it would mean a lot if you can be supportive.”

They may have questions. Feel free to share as much or as little as you feel comfortable, and where you don’t feel comfortable just say “That’s a little personal. I might share it later, but right now let’s talk about (fill in other subject they seem curious about)”. They may disbelieve you or question the diagnosis. You don’t have to prove the validity of your diagnosis. Just stick to the story. “I am autistic. I don’t care if you believe it or not but I need you to respect that identity and respect my needs.”

Once you’ve established the diagnosis you may want to ask for specific accommodations. That can be pretty similar to a formal disclosure: “Hey mom: talking on the phone makes me incredibly anxious because of my autism. Can you text instead?” If you’re running in to pushback on these types of things, there are some amazing resources on setting boundaries out there. You deserve to have your diagnosis taken seriously and respected, and that should be a boundary that you set with those closest to you. You also deserve to have your accommodations respected, and you get to set the boundary that if those accommodations aren’t met (or at least if folks aren’t attempting to meet them) you will no longer be around them.

This is where disclosure gets hard. Because you may have to repeat yourself. A lot of times. Your family and friends may think they “get” it, but still forget, or still not fully believe it, or still question it somewhere in their brain. Disclosure is repetition. “No, I still cannot cook because the executive function of it makes me anxious. Yes, I know it’s been 5 years since I’ve had an eating disorder, this isn’t about that.”

Disclosure is also specificity. It’s about helping the person you love to understand presume competence, believe disclosure. What does that mean? It means explaining that while I can’t cook that meal, I’m perfectly capable of baking a cake from scratch because those are totally different. It’s explaining splinter skills: yes, I can do advanced calculus but no I can’t balance my budget. It’s constantly reiterating which places you need help and what that help looks like, while reminding that you’re not fragile, weak, or incompetent.

At its heart, disclosing to family and friends is agreeing to educate them, and educate them thoroughly on what your disability is and means to you. And that is your peek into the next installment in this series, which is other considerations when it comes to disclosing.