Forums » Smalltalk » AMA: Selective Mutism

Hi RPR! Just your local cryptid here to talk about selective mutism.
"What is selective mutism?" You may or may not be asking right now. Well, I'm not a psychologist, but I do have this disorder, so I'll do my best to explain it according to my own understanding and experiences.
Selective mutism is an anxiety disorder that causes people who are generally able to speak to be unable to do so during certain situations. For me, this usually just pertains to strangers. For example, I often can't order food/drinks in person, ask store employees for help, introduce myself, or give my information at a doctor's office. But during times of high stress or anxiety, I can't even talk to people I do know. ... And don't even get me started on phone calls. I literally can't talk on the phone, except to people I'm close with, and oftentimes not even those people.
I can't stress enough that this isn't a choice. It's not a matter of "I'm feeling anxious so I won't talk." It's "I literally can't speak right now and it's extremely stressful because I need to figure out some other way to communicate which is difficult because most people don't understand what I'm trying to say or don't realize what's going on with me."
I think selective mutism is a misleading name, since it sort of implies there is a choice... a selection. I think situational mutism is more accurate, but I didn't write the DSM, soooo... y'know.
I've had this issue for as long as I can remember, though for my entire childhood and most of my teen years, nobody knew what was going on. They would generally assume I was just shy (at best) or rudely ignoring people (at worst.) I've read that selective mutism tends to go away during the teens or adulthood, but so far, mine is sticking around...
So I'll be here to answer any questions about selective mutism, because I think it's important to raise awareness about this disorder.
Obligatory disclaimer that I'm not a professional, and also that other peoples' experiences may differ from mine, etc etc...
And now... Feel free to start asking questions

Do you have a system in place in case you have an emergency? Texting 911 (in the USA) isn't very common at most the call centers yet, so do you have an alternative way, through an app or other, to get emergency help if you need it?

...The fact that I've never even considered this is actually kind of scary- I... really should have figured something out. Luckily this hasn't been necessary but wow- I seriously need to think about that.
I suppose I'd probably just try texting somebody I know and ask them to call for help, which isn't the most guaranteed way of getting help but in the event that I didn't know what else to do, that's probably it...
I could also try calling 911; I read somewhere that they're required to trace your location and come over there, even if you can't/don't say anything?? I may be wrong though.
So now I'm going to research this. I think there are emergency numbers in my area that I could text but I'm going to need to figure that out just in case.
Thanks for bringing this up. I'm kind of embarrassed that I never even considered it before...
EDIT: There is a specific service (in Canada, at least, which is where I live- not sure about other places) for people who have hearing and/or speech impairments so that they can text 911 if needed. Apparently you have to register for it, though. So I suppose I should get on that. Just in case.

No need to be embarrassed; it's part of what I do for a living and it comes up fairly often as a concern for people with different handicaps or disabilities. Especially if you have one where you can't speak under stress.

Some 911 centers do have text capability; your local PD/FD/sheriff's office could probably tell you if yours is or you could do a Google search if it's hard to talk to people about it. It's slowly becoming more common but the technology and funding tend to lag behind the realistic need. I'm also not sure where you live, so I prefaced it with the USA. It could be different in other parts of the world.

If you call 911 from a cell phone, all mobile devices are Federally mandated to be phase 2, which means they give the GPS coordinates. It's not a perfect system and sometimes the operator will need to 're-bid' the phone a time or two for the coordinates to pop up. The accuracy can vary by tower location and provider, since it's triangulating the signal. Typically, absent any additional information, police are sent to check on open 911 lines or hang-up calls. This can also vary by agency and policy due to area of jurisdiction and staffing levels.

My mind went to the idea of an app though because I'm sure you're not the first person to be confronted with this. Maybe one was created which would help you in a hypothetical emergency, if you couldn't reach someone else? Otherwise, if someone is looking for a fun coding experience... it'd be a good app for someone to make. You could also keep an air tag on you, a smart device, or some other bit of technology so it's another way to track you by a concerned party if need be. Pinging cell phones for their locations is a very mixed bag on the emergency services side.

I appreciate the info And I updated my original reply with a little bit more information that I found by googling

Hi! When we were little after my grandfather passed, my sister developed selective mutism as a coping mechanism. She would only talk to my parents, me, and a few of her friends. Other family members, teachers at school, strangers etc. were all people she couldn't speak to. It eventually resolved with therapy and time. So I understand to some extent how frustrating it is to not be able to speak especially when you wish you could, having witnessed it up close.

What is the one thing you would want from people to make your life easier with selective mutism?

I think the thing I want most is just... understanding.
I want people to understand that I'm not choosing this, not doing it on purpose. I'm not trying to be rude, ignore people, or make things difficult. Like, c'mon people, I'm not doing this for funsies... It isn't fun.
I've had a lot of experiences with people getting frustrated, or even angry, because they think I'm just refusing to speak on purpose, and when people get like that with me it makes my anxiety even worse, making me shut down even more...
I mean, I know many people aren't aware that selective mutism exists, so I don't expect them to magically understand everything I'm going through, but a little patience and understanding go a long way.

How has having this disorder affected your writing?

I'm not really sure if it has. At least, not in any way that I can think of... aside from maybe being the reason I have an interest in writing characters that are mute (selectively or otherwise); I (sometimes) enjoy writing things I can relate to, along with seeing how other characters would treat/interact with those who can't/don't speak. But then again, I also write a lot of things I can't relate to, and many of my characters are fully capable of speech... so it may just be a coincidence that I also like writing mute ones. I don't know

Thank you so much, I thought these were two different conditions because of the name. I'm so glad you fixed that misapprehension for me.

Yay! Glad to be informative

My partner has this as well and you couldn't have said it any better -- there isn't a choice in the matter. I usually have to attend doctor appointments, dentist appointments, anything to do with bill or business I have to take over, phone calls -- all me, and even down to ordering food or exchanging simple greetings to complete strangers -- me again. They also have autism to go along with it, so I spend a lot of time mediating, gauging whether or not they've had their fill of a situation and need to decompress (or recharge), or continue to stand in and do all the talking. I must admit, it's very exhausting to me to some degree as I'm heavily introverted and have a minor case of this myself to go along with my ADHD. Mine has a lot to do with memory lapses in how to function and what I was trying to remember to say, so I freeze up and can't speak. But I'm no where near the case my partner is.

Is there any advice on what I could do to help them? Am I enabling them by continuing to represent them over everything? Do I need to get them to become more independent through healthy, therapeutic means or other possible suggestions? Or is this okay and I continue being their front man?

Thats actually really interesting! I've never heard of it before now.
What are some ways that you've been able to overcome this challenge, like alternatives to talking?

I think what you're doing is a good thing, and probably immensely helpful and appreciated. I can't speak for your partner, of course, but I definitely appreciate when people do this sort of thing for me. That being said, I also feel kind of guilty about it, like I'm being a burden/big inconvenience to the people around me, and I wish I could just do all of these things myself.
So, I think that if there is a healthy way to encourage your partner to be more able to speak, maybe some kind of counselling to help them be less affected by the disorder, that would be a good thing for both your partner and you, since they would have more independence (and likely less anxiety overall) and you wouldn't deal with as much exhaustion from needing to speak for them.
I'm not really familiar with what kinds of treatment, if any, is available for selective mutism, the reason for this mainly being that there are a lot more pressing issues the professionals are trying to address with me right now; this is basically being deemed an afterthought at the moment. So without doing a bunch of research, I wouldn't know what to suggest. But there's probably something out there that could help, and I would recommend looking into it if that's feasible for you and them.
Another thing that might possibly help in some situations is encouraging them to write things down when they can't speak. This... is definitely not a good solution for every situation, but there have been times when I've been able to write down what I need to say and have it be understood that way. (Specifically I would type out whatever I needed to say in the notes app on my phone and show it to the relevant party.) I think this could work for ordering food/drinks, and participating in slower-paced conversations.)
I've also done my best to emphasize to all relevant parties that, if at all possible, they should always text or email me, and not call. (The place I go to for all my mental health stuff has this on record.)
I hope some of this was helpful. I'm no expert on anything, just an anxious kid who can't talk sometimes

• I have a pin that says "I am situationally mute" on it, which can at least help people know what's going on.
• Honestly the easiest solution for most situations is just having someone else do the talking (like telling them what food/drink/etc I want to order from somewhere, so they can place said order for me.)
• Writing things down is sometimes an option, too.
• Informing anyone who might need to contact me that they should text/email instead of calling, if possible. Or giving them the phone number of someone else (with permission, of course) so that person can answer the call instead.
• Sometimes just pointing and other gestures are good enough. Thumbs up/down, head shake, nod, etc...

All of the options that involve relying on other people make me feel kinda guilty though. I hate feeling like an inconvenience.

Thats cool. And don't worry, I doubt anyone finds you an inconvenience. I'm sure they're happy to help

I appreciate the advice -- most of which they try to already utilize with me to convey what their wanting. Writing things down really helps them -- we use Snapchat a lot because it's instant rather than waiting for a text message to come through and that helps when they're needing me. We have just begun the process of seeing professionals as we finally have it where they have the insurance for it, but they've gone so long without this kind of care that , like you, they have other, more pressing concerns that are being dealt with at the moment. But I think the button idea is really clever. Some people don't acknowledge them or take them too lightly, but it gets the point across and I may incorporate a little lanyard or some kind of something that specifies my partner's wiring for the world to see so that empathizers can accommodate.

I hope you are able to eventually get this addressed and have more grasp on the hows and the whys. I know it's gotta be frustrating to have something, not really know what's going on and why, and then not know how to attend to it. You're doing the best you can with it though and people around you are thoughtfully accommodating. I love that for you!

Thank you again for sharing your experience and knowledge. I'm sure with time you'll gain more knowledge and be able to help others even more! I appreciate what you've done.

I just want to thank you all for the questions and especially the supportive comments (meant to say this days ago, oops)