Selective mutism - will it ever get better?

Hi, this is my first post. I’m 19 female and really struggle with social anxiety. I don’t actually have a diagnosis of selective mutism but there’s definitely something wrong. There are some people I can’t speak to at all. The words won’t come out. Even when I really want to, I can’t talk to these specific people. And it doesn’t really even make any sense who the people are. It’s easier for me to talk over video call / the phone than it is in person, but I still can’t ever actually guarantee I’ll be able to speak. I’ve struggled with this for as long as I can remember.

I don’t know anyone who gets it. All my life I’ve had people be disgusted with me for it. Some of my earliest memories are of being told off for not talking. I thought I would outgrow it. Everyone told me I would. But I’m an adult now and it hasn’t gone away. I take Prozac and that’s helped but I still struggle massively. I have no idea how I’m ever going to get a job or anything. I think people assume I’m being rude or that I’m not interested. I wish I could speak to people freely, like everyone else seems to be able to. That’s been my dream for as long as I can remember.

I don’t know what to do to make it better. Will it ever go away? It’s so hard to access help because everything seems to be locked behind speaking.

Welcome! Have you tried those electronic talking device things (I'm not sure what they are called) that nonverbal people use ?

I wish I knew how to fix it myself :/ It only got worse with age honestly, after I burnt out. I also am hard of hearing, so I think a lack of exposure to speech plays a significant role for me. It takes too much effort and I'm exhausted. My auditory processing also got a lot worse as a consequence of the burnout. If you have sensory processing issues, that might play a role for you too. They can work very differently for different people, but result is not taking in some of the sensory information.

I have not spoken or almost not spoken for weeks and even months at a time. Although it's not a huge problem unless you face certain settings. Maybe it was easier for me, because if you have a visible disability, people are more willing to help and accommodate and I simply don't hear with background noise. - That being said, there is nothing wrong with writing or typing responses. It's also good if you can gesture what you want to communicate like point at it. When I go the the reception at a clinic for example, there are too many people and noises and I've got no idea what the receptionist is saying. I mean, it's easy to guess some of it, right? But not the specifics. It often ends on handing pieces of paper or forms with circles, and on pointing and gesturing things. I don't use the phone unless neccesary either. Everything can be done through emails and text messages.

I have learnt to sign too, but it might have problems too if anxiety or overstimulation is a part of it for you too, becuase it sounds like it if voice and video calls are easier for you. Both anxiety and feeling overwhelmed will steal the needed resources to respond in real time. There are plenty of health proffessionals - doctors, therapists and others who do online visits if it is helpful for you. Also food for thought, some members on here have expressed that for them it is problematic to respond in real time, because they "lag" with sensory processing. Therefore cope better with asynchronous communication such as emials or forum posts.

Welcome to the fold, @Darhom

I totally get you. I have a bit of a issue with it myself. Though it was so much worse 3 years ago. Selective mutism is very frustrating. But one thing to consider is how you look at people and situations. As you ASD can play a significant factor in that. Socail interaction will always be the bane of our existence. But learning to adapt, is the only way to make it easier. And minimize your selective mutism.

But to answer your question. No. It'll truly not go away. But with practice, it can be less present. Though if it's a particular struggle, like it is with @vergil96. Using alternative methods to communicate can help.

What you need to understand though, is that you are wonderful person with or without this issue. We all are different in our special ways. But we all know how painful it is to be in the NT world.

You are understood here.

Hello and welcome, @Darhom

During my autism diagnosis, they identified that I was non-verbal in certain situations. Rather than having a separate diagnosis of selective mutism, being non-verbal is a component of my autism. I’ll share with you my thought process so far.

You’ve already taken the first step by accepting your situation and writing about it. Congrats on getting to that milestone.

Now, consider how you would like to think about your situation. Maybe you feel more comfortable with considering autism and selective mutism to be 2 separate things, or you might feel it is more accurate to think about selective mutism as being a part of your autism.

Next, separating out the 2 main types of communication might help you decide where your strengths are.

There are 2 main types of communication, expressive and receptive.

Expressive communication is when you approach other people. Examples include approaching the reception for a medical appointment, starting up a conversation with someone and making a phone call.

Receptive communication is when other people approach you. Examples include being approached by someone asking for help, knowing how to respond in a conversation and receiving a phone call.

I went into more detail here:


Think about which one is your strength and which one is your weakness, or are you equally bad at both.

I discovered my expressive was good but my receptive was bad. So bad, it makes me go non-verbal. I refined my issues down further:

1. Sometimes I know what to say, but I can’t get the words out because I’ve shut down.

2. Sometimes it goes beyond just speech. I don’t know how to react at all.

I understand the words themselves and their meanings, but I can’t process how to react.

In the end, I came to the conclusion that I go non-verbal during receptive communication because I don’t know how to react, because I can’t process how to react, because I’m autistic.

But you can learn to adapt.

Being open about my autism helped, combined with informing people that going non-verbal sometimes is part of me being autistic.

Your written communication is great, you are easy to understand, articulate and polite. That is a strength you can use to adapt. I find ways to replace my verbal communication with written, such as texting, messaging and e-mail. Official correspondence is moving away from in-person and phone calls to websites and apps.

I have a system that I’ve been working on. For expressive communication, I’ll wear a generic “I’m autistic” badge and lanyard. For receptive communication, I’ll be carrying some autism alert cards that say I’m non-verbal when approached, I don’t require assistance, and they can help me by leaving me alone. Also using a tablet with pre-prepared responses informing people I’m autistic, but that might not always help since sometimes I don’t even know how to even react in the first place, let alone speak.

Through time and experience, you can research and explore your own situation, develop your own methods of communication, adapt and modify them, then your success with them will grow.

All the best.

Darhom,

My advice is to try EVERYTHING. I mean all of the stupid little tricks that sound ludicrous, but don’t cost anything to try. Such as:

Wearing one earplug. It sounds impossible but it actually helped me randomly when I was younger (50 years old now). It creates pressure in the ear, feedback inside your skull when you talk, and greatly reduces that feeling of sounds hitting you from all directions.

Wearing one earbud with the same song or movie playing softly over and over. It’s just distracting enough to help sometimes.

Having something to do with your hands, like a fidget spinner or a hot cup of coffee (or cocoa) to sip on.

Etc.

Selective mutism is a reaction to stress. I have experienced it once and it’s unbelievable how the words we’re trying to get out, but all of the doors to my mouth were locked. It can also be an accumulation of anticipation of stress that the brain collects, like a hoarder who keeps old newspapers for the coupons. Kill the stress before it begins and you might kill the stress response.

Hello and welcome @Darhom

I hope the input above is useful to you. In addition to that, I would encourage you to not internalize this as something negative about yourself as a person. How you feel about yourself does not need to be determined by unkind people who do not understand. What you described is relatable and relatively common among folks here.

Do the best you can to block out the voices of those who showed disgust or made you feel badly about this. Not being able to speak in certain situations has no relevance to your worth, value, and competence as a person. It may take some creative approaches to overcome this challenge, but it does not make you inferior to anyone else.

One compounding issue is that the more we worry about talking and beat ourselves up for not being able to, the worse it will get. One of the underlying factors contributing to what you described could very well be anxiety, which can quickly cause a “freeze” reaction in the body. This can affect muscles and brain function required for speaking. It’s not something you can easily overcome, but with persistent effort to understand your experience and useful support (like from others who have similar issues or a mental health professional) you can probably get some control over this.

Xinyta said:

Though it was so much worse 3 years ago. Selective mutism is very frustrating. But one thing to consider is how you look at people and situations. As you ASD can play a significant factor in that. Socail interaction will always be the bane of our existence. But learning to adapt, is the only way to make it easier. And minimize your selective mutism.

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Mine has been getting better since I began the current job, but it's been over a month, and rewiring your brain takes a long time by definition - probably years. One way or another, the mutism isn't going away anytime soon, so it's best to have a way to cope with it.

I call it societal abuse and day I snapped, forced to survive and learnt from NT certain types of ways of being/saying like who gives, so what. Self defence in social world, really.
Almost like looking into someone's eyes, it was difficult for me to open up, at first just few things. To this day still some things in relationship I can never verbally admit, it's like I quietly sit there and wish someone may understand, but um, no, people can't read your mind.

I always thought it was childhood abuse or insecurities, but imposter syndrome explains a whole lot more.
Had article almost year ago on how life pushes one over the edge, how despite worst outcomes we bounce back and this is really what brought me out my shell. People being mellow and nice, some actually saying nasty truth to me....I think all nasty comments forced me to look at myself, try harder.

I think a lot of people here can relate to what you're going through--I certainly can. Like you, there are situations where I simply can't talk. At times it's because I get so lost in conversations, the words get blocked out from other people, or even at times I can completely picture in my mind what I want to say, but I can't get it out, like other people talked about. Unfortunately, it often doesn't get better. I find myself often qualifying things: "I have a hard time processing what people say. Excuse me if it takes a minute to catch up with what you are talking about." Something about letting people know beforehand makes it a little more managable. But, no, sorry--I think it usually doesn't get better, we just learn to live with it, forgive ourselves for it. the worst thing to do is let it get the better of us, stop us from doing things we want to.

FayetheAspie said:

Welcome! Have you tried those electronic talking device things (I'm not sure what they are called) that nonverbal people use ?

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I use iPads and a MacBook Pro with Live Speech and True Voice. It sampled my voice for a very long time and recreates it to talk for me.

I'm 46 years old and looking back perhaps if I'd being able secretly lookup relationship questions on YouTube, have support. I mean I'd being with my friend shopping and she'd pick out my outfits, she was more patient than most girls since we spent more time as we were less popular. But time to explain textures, and long time it takes me to decide to try a top, wear it a bit and then decide if I feel comfortable. I watch a lot more on cooking Channel to try cooking with vigour or excitement, lately mostly dodging allergy test items, so becoming boring again. I like certain interior design shows, lack of budget means less inspiration, do enjoy shopping for house. I wish my mom's sent me on support group for ballet with autism, instead of leaving me to drop out. Maybe all these failures made me into Tom boy I am who struggles worse with being accepted into mainstream society.
A normal girl after having her heart broken will take time to heal, with ASD and due to questions that arise and social confusion it creates mental blocks that if unaddressed may stay with one for life.

Unsure if any others agree with my experience

Wow, thank you so much everyone for sharing your ideas, thoughts and experiences.


@vergil96 I’m so sorry to hear it got worse for you. I’ve never been sure how people will react to the non-verbal forms of communication (pointing, gesturing, handing people notes). Hearing that it’s something people actually do makes it seem less scary. Thank you. I do find asynchronous communication slightly easier to be honest, I’m not sure why, but that’s an interesting point.

And congrats on the new job, well done for going for it because it sounds like it must’ve been difficult.


@Xinyta thank you so much for the kindness!


@Angular Chap that’s really interesting about expressive vs receptive communication, I’d never thought about it like that before. I struggle with both, but I find expressive communication a lot more difficult. I’m only recently diagnosed and not really sure how people will react if I’m open about being autistic, but it doesn’t sound as bad as I imagine.


@AspieChris thank you for the suggestions, I think I definitely need to try some things out. It can’t hurt and it’s not like I can make the situation much worse, lol


@Rodafina thank you so much for being so kind!!


@Kayla55 you say ‘all these failures’ but you haven’t failed, you’ve made it through some difficult things. Perhaps not in the best possible way, but you did your best and that’s the most important thing. You’ve still grown from those experiences.

you say ‘all these failures’ but you haven’t failed, you’ve made it through some difficult things. Perhaps not in the best possible way, but you did your best and that’s the most important thing. You’ve still grown from those experiences

i had opened up once, my true feelings to be shut down or echnored due to it being viewed as dysfunctional or not confident or 'whatever' few other times was smaller or milder issues that seemed not ok to talk about inadequacy so....
stunted my voice or rather sent me into digression. Perhaps older people address deeper feelings, but no way for me to open up
Society is a pretentious muck- hole, what I've learnt is to value myself, alone and my need for others diminished really making me stronger, but really making my life lonelier and resulting in me wanting to help others less and less. I suppose on forum I decided to change due to fact that there were others like me, but I've really suffered in my life, ostracised

Darhom said:

Wow, thank you so much everyone for sharing your ideas, thoughts and experiences.


@vergil96 I’m so sorry to hear it got worse for you. I’ve never been sure how people will react to the non-verbal forms of communication (pointing, gesturing, handing people notes). Hearing that it’s something people actually do makes it seem less scary. Thank you. I do find asynchronous communication slightly easier to be honest, I’m not sure why, but that’s an interesting point.

And congrats on the new job, well done for going for it because it sounds like it must’ve been difficult.


@Xinyta thank you so much for the kindness!


@Angular Chap that’s really interesting about expressive vs receptive communication, I’d never thought about it like that before. I struggle with both, but I find expressive communication a lot more difficult. I’m only recently diagnosed and not really sure how people will react if I’m open about being autistic, but it doesn’t sound as bad as I imagine.


@AspieChris thank you for the suggestions, I think I definitely need to try some things out. It can’t hurt and it’s not like I can make the situation much worse, lol


@Rodafina thank you so much for being so kind!!


@Kayla55 you say ‘all these failures’ but you haven’t failed, you’ve made it through some difficult things. Perhaps not in the best possible way, but you did your best and that’s the most important thing. You’ve still grown from those experiences.

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It is hard to live with not being able to talk. Strategies help but it is always hard. I am always worried about how people might react, especially if a police officer tried to talk to me and asked questions. Once a police officer did come up to me to redirect me away from a crime scene I did not know I was walking into. I did a scary thing. I always reach into my backpack if I am going to speak, if someone starts talking to me. I did it when the officer started talking to me not thinking it could be dangerous because he might think I was getting a weapon. It was not a problem and he stayed calm but I was sacred after thinking I should not do that, I could get hurt. But it is my natural reaction and it happened fast so I forgot to not reach for anything in front of a police officer.

People have been mostly nice. I have been surprised at how well people have accepted it. A few days ago I had a FaceTime doctor's appointment and used Live Speech so I could type to answer the doctor's questions. She was awkward at first not realizing I was not refusing to answer but needed time to type a reply. Then it went fine.

Apple has something called Personal Voice. It is my voice recreated by the computer. I had to respond many many questions, it took a very long time then needed to process overnight. I think it does sound like me. That is the voice I use. The voices Apple has people have trouble understanding.

Wanting to talk and not being able to is hard for me to describe to someone who does not have that happen. The way other people here described it is exactly what happens. Words will not come out.

The things that have helped me most with my autism is learning strategies. I cannot change who I am. Often when people speak I hear a wall of sound. There are words in there, I know, but I cannot hear a word, just all of them at once moving towards me. My ex girlfriend used to come with me and translate. The person would speak and I would look at my girlfriend and she would tell me what it meant.

I have not met any medical people who know about autism but they seem to figure out I am talking to them with my iPad and when I point to me hears and nod, that I can hear them. One time when I used my iPad at the Post Office the clerk started signing (American Sign Language) with me. It would be like heaven if everyone would sign with me but it only happened once. One day I will try using an interpreter, people have offered it. Usually things are short enough it is less stress to use my iPad.

I hope you have a good life. I think you will do better than me because you are learning things sooner. I did not know about autism until I was 36.

@grommet that experience with the police must have been scary. I don’t know if they have them in the US? (Assuming that’s where you are) but I have a special card to show police if needed. It just explains that I’m autistic. I suppose you’d have to get that out though, or you could use a lanyard if you’d feel comfortable with that.

Thank you for all the information on the Personal Voice thing. My phone is too old to have it, lol, but I need a new one soon. I‘ve looked at the Live Speech thing and I think it would be good, if the words didn’t get all jumbled together. It’s good to see an option like that though.

Darhom said:

@grommet that experience with the police must have been scary. I don’t know if they have them in the US? (Assuming that’s where you are) but I have a special card to show police if needed. It just explains that I’m autistic. I suppose you’d have to get that out though, or you could use a lanyard if you’d feel comfortable with that.

Thank you for all the information on the Personal Voice thing. My phone is too old to have it, lol, but I need a new one soon. I‘ve looked at the Live Speech thing and I think it would be good, if the words didn’t get all jumbled together. It’s good to see an option like that though.

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I also have a card and I wear an autism ID necklace. The problem is reaching for something if the police are there. I have not solved that problem though I talked with a police officer online who helps autistic people in their encounters with police and he suggested pointing to my throat then miming writing on a pad.

The problem for me is I always reach back for my iPad when someone starts talking to me so I do not know if I could stop myself doing that if it is a police officer which is a much more stressful situation.

I hope you can try Live Speech and True Voice. Live Speech works okay without your own voice but most of the peopleI tried the Apple voices with had trouble understanding. It speed up some words so they are pronounced badly. One sped up word then the others said properly. Difficult.