We recently went to the Camp in Philadelphia at the Smart center which specializes in selective autism and I thought I would tell you my experience in case anyone is interested because it’s a lot of money so I know you’d wanna know if it was worth it. Overall, we had a good experience. I like that. They do parent sessions while the kids are in camp. It was very very, very informative on the causes strategies to help them dealing with the schools medication, etc. they really covered everything. My daughter who is 14 I have to say it was probably in her group anyway one of the severe cases of SM. She was verbal from day one she’s been verbal with adult strangers for a while, but most kids in her group were completely nonverbal with anyone other than their parents so I do feel that a lot of it was targeted for kids who may be more severe with their SM. Having said that,, I do think she learned some strategies and some social skills on how to keep conversations going how to elaborate in conversation and maybe it just helped increase her confidence a bit. The parent part was really in the part that I think that cannot be emphasize enough that was the most helpful. If you’re on the fence about doing this camper, any other like if there are any, I suggest you do it. I do not regret spending the money and I do not regret going. Let me know if anyone has any questions.!

thoughts ?

I had selective mutism when I was a child, and one thing that would happen sometimes is that I would “accidentally” speak. Like, sometimes I’d get so excited that I’d blurt something out, only to immediately clam back up. I was curious if this has ever happened to anyone else.

I have selective mutism myself, and I’ve struggled with getting through everyday conversations and appointments.

So I built an app that helps you prepare what to say before going somewhere, then show or speak each message when needed.

At first glance, it may look like a regular AAC app, but its main feature is the Prepare button. You enter where you’re going and what you need to do, answer a few simple questions, and it creates a step-by-step script for the conversation.

You can try the web demo here:
https://en.vocalproxy.com/app

I’d appreciate it if you could tell me whether it seems useful for people with selective mutism. Any feedback about what you liked, disliked, or found confusing would also help.

The web version is only a demo and does not support subscriptions. For regular use, the app is available on Google Play

So I have selective mutism and I wanted experienced it in similar way I did.

For me it was never that I was really afraid of talking. It felt more like a choice or I didn't even try to talk( eat, write, drink, use the bathroom) at school or like I was doing it because it had always been like this.

Has anyone else experienced it that way ?

The book is on Amazon — The girl with the invisible voice

I wanted to share something that's been on my mind, and I hope it comes across respectfully to everyone here.

I’ve noticed that the term "selective mutism" gets used online to describe a really wide range of experiences, including severe social anxiety, general communication anxiety, intense shyness, or freezing up during a conversation. Those struggles are incredibly real and difficult, but they aren't always the same thing as selective mutism.

My daughter has selective mutism. At home, she is highly verbal, confident, and full of personality. She has a great vocabulary and loves having long conversations with us. But the moment she steps outside the house, including at school, she becomes completely nonverbal. It isn't a choice, and she isn't refusing to communicate. She wants to speak, but in those environments, she physically cannot.

Selective mutism is a specific anxiety disorder where a person consistently cannot speak in certain social settings, even though they speak comfortably in environments where they feel safe. It’s different from just feeling incredibly nervous. A lot of people with social anxiety can still force the words out, even if it feels agonizing, whereas someone with selective mutism experiences a total freeze.

There are so many reasons people struggle to communicate, such as social anxiety, autism, speech and language differences, trauma, or something else entirely. Just because behaviors look similar on the outside doesn't mean the same thing is happening internally.

I’m definitely not trying to invalidate anyone else’s struggles or say their pain matters less. I just think it’s really important for selective mutism to be understood accurately, especially since it's already so widely misunderstood.

I’d love to hear from adults who have selective mutism or other parents navigating this. What have your experiences been like?

I had SM as a child but didn’t tell many people about that.
I’ve had low-profile SM as an adult, but didn’t realize it until recently. I never told anyone what I was experiencing because I always felt completely misunderstood, and I hated the impression that I was just very shy or had no self esteem or just needed to work on social anxiety.

I’m much more open now and comfortable with who I am. My SM has lessened considerably in the past few years, although I still experience it!

I would like to start sharing with a few people, but I’m still hung up on the idea that it’s so easy to misinterpret. I’ve only shared with one friend, and that was a 7-page letter. lol
And I told my therapist, but she got really gentle and started telling me “It’s ok to talk here. Whatever you say is OK.” Um, hello? I’ve been talking to you without hesitation for the last few months! lol So I wrote a 10-page description of my SM for her. lol

I need something shorter!

What’s a simple and understandable way that you have explained SM to someone?
Or how have you shared your own SM experience that someone without SM could understand?

And how was the reaction?

My almost 4 year old daughter was diagnosed with social anxiety and selective mutism. The therapist is not a specialist in SM, and she’s recommended therapy for me and my husband together to get to know us first / coach us on parenting strategies that would hopefully help my daughter overcome SA. She believes down the line she can directly treat my daughter through play therapy.

Thus far, the therapist has recommended school interventions like “let’s tell the teachers to encourage her to use her words instead of resorting to gestures and other forms of communication.” For example, she suggested that if my daughter asks for a crayon (by pointing), that the teacher not give in and nudge her to use her words even if it’s just the color “well I don’t understand if you don’t use your words,” and other suggestions like this.

I’m just beginning to learn about SM, and everything I’ve read so far has highlighted the importance of not pressuring the child to speak. The therapist’s recommendations therefore seem not to fit recommended treatment style?

Another one of her suggestions was similar to a fade in. My daughter will speak to dad if he’s at school with her, so the therapist said for them to sit down together with her teacher and explain that the teacher is not understanding her because she’s not using her words, so we want to let her know that it’s ok to speak.

I’ve found two other therapists that actually specialize in SM. One is play-based while the other uses PCIT-SM. Both options are of course very expensive and in struggling to decide which route to go.

I’m curious to hear about others’ experiences with therapy and what worked and what didn’t.

In high school, when talking was a requirement to get a grade (like you had to make a certain number of substantial contributions to rack up enough points to get an A) like socratic seminars, I didn’t talk even though I knew I would get an F. And this is coming from someone who was VERY overachieving and never got a B in their life. Grades were everything to me yet I still put them on the line for this. Anyone relate?

I know I do lol. I can't handle compliments because I feel I don't deserve it 😅

Anyone else?

So I (20f), have struggled with talking ever since I was a kid. I don’t believe I am selectively mute, but I do have level one Autism. A lot of people on the Autism community page seemed to either not have this problem or have it for a different reason than I do.

For me, I can talk about basic stuff with others, but really have a hard time when it comes to raising my hand in class, speaking freely (when the teacher just lets everyone talk at once rather than going around the room), and talking to classmates randomly. My big issue is the attention I receive from it (in elementary and middle school, people would say “She talked!” And teachers would bring up that we had “our longest conversation ever.” Or if I did well on a test or assignment, my teachers would get so excited, shake us, high fives, hugs, all the tactile stimuli basically. They also used very excited and detailed praise. This led me to get very worried every time we had a test (it didn’t help that my parents were obsessed over me getting good grades lol). When it came to the non-grading testing (the state tests and stuff), I purposely did bad so that people wouldn’t draw attention to me.

Now as a college student, my biggest struggle is asking to join in. Whether it’s a game or event, it’s hard for me to get involved. I am a student athlete, but that doesn’t really count as a club or event. My parents are always nagging me to advocate for myself and telling me what to say if they think I’m struggling, but it’s so much more than that. I need a script, social story, pacing board, something to make me comfortable so I know I’ll be OK. Most importantly, I do not want attention.

Does anybody here struggle with this? A lot of people in the autism community interpreted differently for different reasons than I do, but I was wondering if anyone on here feels similar to me.

If someone says something really dumb and you want to correct them, or you want to share your opinion in class or agree with someone who's cool, and you can't, how do you handle the emotions?

I have a text to speech app on my phone, but it wants to charge me $99 a year.

It's also extremely difficult to type on the app on the phone without getting heaps of typos. The app doesn't pronounce words right when I typo and leaves me feeling frustrated. I know I could correct them, but I don't always catch them because I'm rushing to not waste time.

I'm much more used to typing on a keyboard, as I game a lot and write online, but most of the keyboards for phones look like they require the phone to be horizontal, but the app only works vertically and doesn't rotate the screen.

Is there any text to speech devices out there I could buy where I can properly type? I really don't want to lug around a full keyboard.

Hi everyone,

I’m hoping to hear from people who’ve experienced something similar because I’ve had a few episodes over the last couple of years that I don’t fully understand.

First, I want to mention that I am not autistic, since I know that’s something that often comes up in discussions about becoming nonverbal.

My episodes started when I was around 14 or 15, and they’ve happened a handful of times.

There seem to be two different kinds of situations that can trigger them.

The first type happened in the past when I would get caught in really negative thoughts like, “I’m so annoying,” “People would be better off if I stayed quiet,” or “I don’t deserve to talk.” During those times, it felt like I lost the ability to speak even though I knew exactly what I wanted to say.

The second type happened just last night with my girlfriend, and it was completely different. We were joking around, and I got extremely flustered in a good way. I wasn’t anxious, scared, or thinking I was annoying. I actually felt completely safe and comfortable with her.

At first, I was perfectly okay just sitting there quietly. But later on, when I actually wanted to start talking again, I realized I couldn’t. It felt like the words were trapped. I knew exactly what I wanted to say, but I couldn’t get the words out.

The episode lasted from around 10:00 PM until about 1:00 AM. During that time:

I could understand everything people were saying.
I could text normally.
I could laugh and make sounds with my breath.
I wasn’t confused or anything like that.
If I absolutely had to, I think I could have forced myself to speak, but it would have taken every bit of effort I had.

The next morning, I was able to talk again, although speaking still felt harder than usual for a little while before it went back to normal.

I’m not looking for anyone to diagnose me. I’m just curious if anyone else has experienced something similar where you know exactly what you want to say, but it feels like the words are trapped and speaking suddenly becomes incredibly difficult.

If you’ve had experiences like this:

What did they feel like for you?
How long did they last?
What seemed to trigger them?
Did you ever find out what was causing them?

I’d really appreciate hearing your experiences because this has happened more than once, and I’m trying to understand whether other people have gone through something similar.

Hi, my 8.5 year old daughter is on fluoxetine since 3 months… 1.5 ml for 8 weeks and 2.5 ml for 4 more weeks… She used to be okay in school and kids of her age… Her main issue is with bigger people other than her age… she never used to respond… just nodded thats all… after taking medication we have seen little improvement like talking with them over phone and respond small direct questions… These improvements she is showing with my friends… but not with our relatives( I am indian )… Our paediatric psychiatrist feel that this improvement is not the one she is expecting, she is expecting more and she is going to change medication in coming consultation… please give some suggestions as i am really scared and worried about of our daughter

My son is now 5 but I started suspecting he had selective mutism around at 2.5 because he had an above average vocabulary and expressed himself so, so well at home, but would not speak to anyone but 1 friend at school. It causes problems because if he's upset at school, he won't/can't tell anyone what happened. And at the end of the day he's understandably frustrated and exhausted from not speaking at school, so he's emotionally unregulated and unhappy.

My husband and his teachers assured me it would improve with time but it hasn't, at least not much (he speaks to most friends now, and a few adults that he knows well), so now that he is entering kindergarten, we finally had him evaluated. The diagnosis was selective mutism. The doctor recommended an autism evaluation but because he wouldn't communicate with her, she could not perform it, and she says we can keep an eye on him and see if some of his social challenges improve as the SM improves.

The recommendations were for him to start behavioral psychotherapy to help "fade" some of his biggest anxieties, OT for some of the sensory stuff, and to get evaluated for a 504 and/or IEP at school, primarily so he can get support with communicating in a way that is comfortable instead of pressure to speak.

Some background, my husband and I both experience depression and anxiety, we are very introverted (as is my son), and my son is a "pandemic baby" so he didn't see ANYONE's entire face except for ours until he was 2 years old. I had severe perinatal depression and anxiety, including OCD, spanning before and long after his birth. I think all of those things probably factor into his anxiety outside our home. We can totally relate to his reluctance/inability to talk in social situations, it happens to us to some extent as well. (Honestly, I'm 100% convinced he acts just like my husband did as a kid, except my husband felt much more pressure to please people and would talk if required to.) If it's of interest, we have a 3yo son who is extremely EXTROVERTED, literally never stops talking, and is a huge risk taker.... where did that come from? I think we have a much harder time relating to him than 5yo.

5yo seems to loathe discussing his feelings with us. Maybe this is a component of the SM. I have tried a bunch of different approaches and he either shuts down or starts making fart jokes. I keep trying a little but eventually I just say, "Well, I'm always interested in what you're thinking and feeling, so you can tell me whenever you want." Sometimes I say "There's no right or wrong answer" or "You would never be in trouble for telling me anything" because I wonder if that's a fear he has. I can't really get a sense of whether he feels supported enough, or if we could be doing better. Whenever he does share anything sensitive/personal with us, I don't make a huge deal so he won't be embarrassed, but I always say "thank you so much for telling me."

tl;dr I'd like to hear from you. What did your parents do, or what do you wish they had done, to support you? Has anything in particular helped you a lot? It isn't really my goal to fundamentally change who he is as a person (I think he is wonderful, and the world needs more sensitive introverts!!!), all I want is for him to feel comfortable enough to enjoy what he wants to enjoy, pursue what he wants to pursue, and to be able to ask for what he needs.

I am sharing my story, IDk why but really need to burst out the things what I really felt becasue irl eveytime I tried to speka about ti I started panicking and just getting the things mixed up and was never able to clearly coommunicate hwo I really felt
You can dm me if you want to read it or jsut comment Will sahre the community

(23TM)
I have audhd. I’m trying to find what the term to describe this and I’m not sure if it can fit “semi-verbal” situational mutism” or what because I’m like this a lot ever since I was in school and it was a struggle tbh,I never really had a through of talking and I jsut couldn’t ,but I’m also a quiet speaker aswell & sometimes I would only talk when I’m spoken to or need something other then that not really;unless vocal stimming counts tbh.

But talking always been a struggle for me,but even at home and online sometimes it’s hard not only due to being overwhelmed by somthing ;but like I have trouble talking & I really ain’t that verbal at home,I’ve always had a quiet and soft spoken voice tbh & at school I was mostly mute or experience a mustim that was like in situations when I’m only spoken to.

Talking for me when it comes anything ,I don’t really think about talking or what I wanna say at times ,sometimes but barely everyday I think like this at all!!!

It's like I don't really be thinking of when to talk or what to say at times!! Like seriously if I'm not spoken to or if I don't wanna talk I wouldn't talk unless someone speaks to me I never been hyperverbal like all al!!! Even if it's autistic joy or trying to communicate speacial interests l also can't even do thay even online I can't it's like something is blocking me from explaining and talking about it I rmeneber during lunch and stuff I would only Make gestures and echolialia even in elementary school!!!

My friends would pressure my into talking which was very hard and painfull especially to me mentally because I don't want to and second I couldn't even get a would out then I'll start getting overwhelmed to the point I couldn't even talk at all,l used to take meds that actually reduce my ability to communicate and left me with idk but it wasn't even the medication after | stop taking it it still was the same the same expericnes over and over I'm only talking to people if I want to and if they spoke to me and even if they did it's still hard cuz 'll be very quiet and soft spoken as a child.

For context, I'm 32F, Autistic with Bipolar, Major Anxiety and Depression. I've never felt like I couldn't physically speak before until today. I got in a tiff with my mum and now I can't talk.

I quit weed 1 month and 20 days ago, so I'm not coping the best under stress. I've been unusually irritable and having more miscommunications than usual with my mum.

It's been understood that it's a symptom of withdrawal and nothing personal, and I apologise constantly when I catch myself getting overwhelmed.

Today, we were in a discord call about to play GTA together. I was mid explaining to her something about the game that would help her, and she told me to shut up mid sentence. This isn't the first time she's done this to me lately.

I went quiet for a bit, and then I asked if I could finish what I was saying. I paused, allowing her time to answer and I heard silence. I assumed she was still doing whatever she interrupted me for, so I stayed quiet, and then she got frustrated with me and said "well speak then" while raising her voice a little.

I clarified that it was a question, and she started getting whiny/exhausted in tone with me and was like "oh look just speak."

I started to continue, and every time I opened my mouth, she cut me off again! She kept repeating speak, just speak as I was trying to, and I finally snapped and raised my voice to be heard over her and I said "well if you'd shut up for five minutes I could"

She went quiet right away, and I felt bad and said, "I'm sorry, but like, what the hell." I started to repeat my original sentence, and I heard the call drop. She just left without saying anything. A few minutes later, I hear her shut her door. She can't handle being told to shut up but it's seemingly okay for her to do it to me.

After this I was just sitting at my desk and I was shaking like a leaf and I felt like I couldn't speak. Like my lips were glued shut. I tried to talk to my cat who was comforting me, and I couldn't. It's like there's a mental block stopping me from talking now.

I also woke up the other week screaming "nobody ever fucking listens to me". I can't remember the dream at all but I'm sure it's relevant to feeling like I can't speak?

I feel like I've just been shot down, misunderstood and judged by people my whole life, but this is the first time I've gone silent.

She hasn't responded to my apology message I left for her. Guessing she just went to bed or is processing things but it's left me feeling like this.

It feels like nothing I have to say matters anyway, it's gonna get taken the wrong way, or im going to be spoken over and I just don't have the energy to try anymore.

Is shutting down like this normal for people with Autism and if so, how long does it last, and how do you communicate that you can't speak anymore when its happened for the first time? I don't want to get in trouble for not being able to speak and have her thinking I'm ignoring her when we cross paths in the house.

Does anyone else act out mentally conversation scenarios like i suffer from limited vocabulary i was non verbal till i was 6yo and had speech therapy most my childhood i still suffer from getting my point across as my brain scrambles things I want to say, masking symptom means I act out various conversation points beforehand so I can go into conversations and have a scripted response for anything I may be asked, most of the time i copy what other people say or quote film or tv scripts that might reference what we talking about.

Sorry if this is incoherent