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.