October is selective mutism awareness month.

[HerRoyalRisesAgain]

Selective mutism is a severe anxiety disorder which leaves the sufferer unable to speak in certain situations.

DD is the loudest mute child I know.
She has had SM since she was a baby. At age 2 she would only speak to me. Now at 7 she can speak to all of the family and she's able to speak in school unless it's a substitute teacher. She knows all of the teachers and TAs.

She's gone from silent and tracking behind academically to talkative and perfectly average and in some subjects she's even ahead of what's expected. To say I'm proud of her is an understatement.

We still have work to do, she can't speak to shop keepers, some people in public, bus drivers etc, but she's made such immense progress.

For teenagers / adults I’d recommend the book “A Quiet Kind of Thunder”. It’s a very sweet YA romance where the main character has selective mutism

Thank you for that recommendation, something to look for for DD when she's older. A character with SM like her will be good for her to relate to.

DS used to wave at the register as well, all the way through primary school, even though by then he was talking to the teachers a little. On moving to secondary, he now speaks at the register as well as when asked a question by teachers and we are convinced it's linked to the fear of "looking stupid" in front of new people - at his primary school, all the kids in his year knew he didn't really speak but when faced with 200+ new kids, it was clear that he wanted to try to break free from the label. Not that he finds it easy but it's interesting that the physical "word getting stuck in the throat" reduced when the alternative was embarrassment, as he saw it. It's difficult as I don't want to put him in situations where he's really fearful but sometimes a nudge helps - but as with everything it has to be baby steps and if you push him to far he ends up going backwards.

That was a big bit of the advice we got from the Ed Psych - try the next step but if it doesn't work then go back two steps before moving forward again - so he initially went out of class to play games with the ELSA and a friend. Initially no speaking needed then the game required him to speak to the friend but not the ELSA and then to the ELSA. This was all done in room with closed door. When it was deliberately left open, he stopped speaking. So back to the closed door but then moved to leaving it just slightly open. Then once used to open door, they played the games in an alcove in the corridor. Then they deliberately used to get someone to walk past and initially he wouldn't speak if there was anyone nearby but then did. Then they moved to playing the game at the back of the classroom. Then they got another child to join them. Then the teacher joined them. It probably took three months of twice a week to get to that stage so it really was slow progress but it eventually transformed him. By end of primary, he even said a line in the school leaving ceremony - I noticed his Y4 teacher had a tear in their eye as well as me!

@ThanksAgainForNothing

I have SM. I had such a hard childhood due to it 😞

Same, same.

[quote Makelovenotpetrol]@MrsColon no absolutely not. It can, and is caused by severe prolonged trauma before the age of 8.[/quote]
I'm sorry about your trauma and cPTSD I would imagine that trauma is right up there as a cause - could trauma related anxiety manifest itself as SM, I wonder?
I suffered CSA and my therapist suggested mine could be flashbacks from before tiny me could talk. It happened a lot at the beginning of therapy before we realised what was going on.

I'm tempted to buy “A Quiet Kind of Thunder” for DD - she's a really kind and thoughtful big sister and despite being quite shy herself has spent her life talking for DS if needed. But DS wouldn't appreciate the romance element - any recommendations for a fiction book for a teenage DS with SM? He actually really enjoyed the London Eye Mystery and Guggenheim Mystery which has an autistic boy as lead character as there's definitely some shared traits, and Boy Under Water also touched on some mental health issues, but I've not found anything directly with an SM boy character.

@Redjimjams I do have an explanation and I understand exactly why I am like I am, but it's not something I can discuss ... If I could discuss it I'm sure I wouldn't be still choosing to be SM as much as I do!

he even said a line in the school leaving ceremon that's amazing! Well done to him, and to you fir supporting him so much he felt able to do that.

[quote Makelovenotpetrol]@Redjimjams I do have an explanation and I understand exactly why I am like I am, but it's not something I can discuss ... If I could discuss it I'm sure I wouldn't be still choosing to be SM as much as I do![/quote]
Ah sorry, no I wasn't trying to get you to explain, I was just thinking how it's quite reasonable for trauma to cause this, even though as a pp said, it's anxiety that is on there as part of the diagnostic thingy for SM

My apologies

this is a great thread. My dd has this. She is 15 and for her it didnt really start until around age 10/11 although looking back there were always some situaitons where she struggled a bit. Sadly, having missed so much school over the last 18 months has made it much, much worse as basically she was happiky cocooned at home for so long, never having to talk to anyone at school! Sadly school have been useles at helping her (she had 3 "counselling session", they concluded she had separation anxiety, and then said she was now actually fine- neither thing was true!)
She is very clever and very academis and wants to go to uni etc but this is begining to have such a negative impact on so many areas of her life.
I'm going to buy the book recomended above as she loves reading so that will be good, and am just arming myself with info to approach the school again. The trouble is she would not be seen by CAMHS as she is too "well" but there isnt really anywhere else to turn for help for her.

@Redjimjams
If someone has SM, completely without any other preexisting conditions that can cause it, or trauma then anxiety would likely need to be present to be diagnosed

However, SM can be part of another issue, as in my case or that of sensory processing disorders etc, so anxiety may then not need to be present as the SM is being caused by the other thing, not anxiety is causing SM... If that makes sense!

@HerRoyalRisesAgain DD and DS have always been encouraged to believe they will find their place in society albeit tailored to their conditions as DD has severe Misophonia too

I think the fact that DH who also has ASD ADHD and anxiety has a niche role career provides a positive role model for them to aspire to

If I could do only one thing for all young people with ASD it would be to highlight people like them who are achieving in society as they are far too often not encouraged to aim high

My dd has this. Never diagnosed but recognised at nursery as she never said a word there. At school she can speak and even participates in a theatre group, but she can't talk to people she doesn't know.

Has anyone read this book? I'm halfway through, and find it really informative.

^finding

@UnfinishedBunting I've not but it has been recommended

My 11 year old enjoyed a book called 'Zero' where the main character has SM. DD was born prem and has a few medical things going on, so at first the lack of language was thought to be due to that. She was diagnosed SM at 6 and has the very obvious frozen look when spoken too, people don't know how to respond. She also can't stand having her photo taken, her first one at nursery was heartbreaking, all swollen eyes and snotty nose.

We've just been part of a research study which seems to have been a catalyst for her to tackle the SM. I've got a private SALT on board who worked with her before, and she's started sessions at school now. She had already improved from when she was younger, but COVID saw her take a real step back (online lessons meant she could hide for the entire lesson). She's doing brilliantly now, she's setting herself challenges with her therapist and teacher. Last week she put her hand up in class. I honestly would not have thought that possible a few years ago and it feels like if she carries on the way she going, she might be able to wave goodbye to SM. Just wanted to share so people know there is hope, there's still lots of work to do but the difference is amazing.

Thank you so much for the post. My 16 year old daughter has selective mutism and autism.

One psychologist we saw described it as a phobia of speaking in some circumstances.

My daughter says for her, she just physically can not speak at these times. She desperately wants to but she feels like her brain just overloads and she can't.

Her autism also means when she can speak she often takes a little longer to reply (auditory processing).

But she is getting there. She found a little group of friends at school last year who are really kind and included her at lunch and recess and slowly she's now been able to speak a little around two of them and her goal is to increase that number.

School has been quite traumatic for her at different times due to bullying, so for her to find these kids has made an enormous difference in her life.

I'm so glad so many are making progress.
Lockdowns really didn't help it seems, although DD loved it and began reading at home because of it whereas previously she would freeze and not be able to read.

I didn't realise it had an awareness month. I'm happy about this.

I have selective mutism but I hate calling it selective mutism because people think I can intentionally choose/select when to speak. I call it partial mutism because while I can speak and sometimes quite a lot , it depends on the circumstances, where I am and with whom. I don't choose it, it happens and I can't help it no matter how hard i try. The harder I try, the more distressed I become because i'll stop making sense and my voice will go quieter and quieter.

As some pp have said, stress, discomfort, new people and unknown situations trigger it in me to the point that if I ever needed to take the bus, I'd have my stop and fare ticket request written down to show the driver. I couldn't speak because the times I tried to, it was so quiet they couldn't hear me and asking me to repeat myself made it worse. Showing it to them made them aware I needed a bit of patience and understanding. I noticed they were kinder and more helpful.

I've had it since I was a child and it was unknown and I was thought to be the ridiculously quiet child. I'm also autistic with other comorbidities. It was a struggle then.

It's actually in my adult age that I've learned to manage it because I have no choice really. No one else can do it for me. I had to find a way to navigate the world with it. So I do most necessary communication in writing (email or chat, etc). I have Relay UK when I need to speak to companies, for example but otherwise, I use their chat system or email.

Out and about, I can talk but only quick hellos and how are yous. Trying to engage me in random unexpected conversation or small talk triggers it as well and I start getting really low - energy wise. This also triggers my SPD so much so that once I get home, I may cry (release from built up frustration or whatever) or not be able to speak for sometime before I can speak again to my family. They understand, so leave me alone when I can't speak or still talk around me if I don't mind.

Due to this, I write too much because everything I want to say, I can't say them verbally but they all come pouring out in writing. Sorry

My son is selective mute, he doesn’t speak at all in school. School refuse to acknowledge it and He tells me the teachers get angry or shout at him because he doesn’t speak 😣 he has no friends because of it

Due to this, I write too much because everything I want to say, I can't say them verbally but they all come pouring out in writing. Sorry don't be sorry, write away!

School refuse to acknowledge it and He tells me the teachers get angry or shout at him this is absolutely awful. I'd be taking this to the governors/ousted if they refuse to listen to you.

BakingOfTheFoodCats, that sounds awful. Might a formal diagnosis help to get school inside?

ChangeOfMNScenery, I agree with you - the name can still be slightly misleading I think.

It's really interesting to read adults' experience of SM on this thread. Thank you.

I don’t think I can get a diagnosis if the school won’t back it up, I’ve tried to speak to the senco but she just said she doesn’t think he has any special needs, despite the fact he doesn’t speak to anyone not even the other children. He will talk all the way down to the school and as soon as he gets on the road of the school he will stop speaking completely. He tells me other children ask if he is deaf or unable to speak English. I don’t think I will get very far without the school acknowledging it.

@BakingOfTheFoodCats DDs preschool said she was just shy but I managed to get a diagnosis anyway. It's definitely worth looking into self referring to speech therapy

@BakingOfTheFoodCats

My son is selective mute, he doesn’t speak at all in school. School refuse to acknowledge it and He tells me the teachers get angry or shout at him because he doesn’t speak 😣 he has no friends because of it

That's awful.

You can take them to a speech therapist anyway. A lot of areas have drop in / self referrals.

I would also be complaining to school / moving schools.