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12-year-old DD has completely stopped talking

36 replies

ChiefCakeTestertoMaryBerry · 26/04/2025 07:37

Has anyone had a child who has completely stopped talking?

Over the last couple of years, my daughter (12) was always reluctant to talk to adults, even ones she had known for a while. She would say it was too scary to even say "hello" if someone said hello to her, which led me to wonder about low-profile selective mutism. However, she always talked very freely at home and with her friends. She is autistic (diagnosed in Year 6).

For about the last 6 weeks, however, she hasn't talked at all at home (to me, her dad, or older brother). She does actually make quite a bit of noise - it's just that she doesn't talk. Sometimes she says half of a word (e.g. "juh" for "jumper'). She did manage to talk (as in to read out the letters) at a recent opticians' appointment. She says that she can't, rather than won't, talk.

DD started Year 7 in September and really does not like school. She hates the environment (too loud and crowded) though she is doing OK academically. Homework is a battle. I am told she does talk a little bit at school to her teachers if she absolutely has to. She is getting quite a bit of support from school and has a key worker, ELSA sessions, and a timeout card. The keyworker has asked teachers not to call on her in class. One morning she flat out refused to go in until about 9:30am, during the time when she was not talking at home, she did speak to the attendance officer.

Has anyone experienced similar? We are trying not to put pressure on her to talk but it is very difficult and frustrating. I don't know if it's a control thing, as in she feels the one thing she can control is not speaking. I am also worried that she can't go on like this or things are just going to get harder and she will become increasingly socially isolated.

OP posts:
Needlenardlenoo · 26/04/2025 07:53

Selective Mutism Information & Research Association

https://g.co/kgs/qhx1kF1

This sounds like classic selective mutism and you need specialist advice - not Mumsnet! I'm not an expert but I know it's an anxiety based disorder.

lalaandpo · 26/04/2025 07:57

My DS (17) is Autistic. He had a rough ride at secondary school and although he carried on, as in his brain he knew he had to go to school so that’s what he did. He has suffered trauma - again , because he carried on we didn’t see what a big problem was happening. He left school with, I call it, situational mutism. He was absolutely fine conversing with us/close family but anyone else he physically couldn’t speak to.
In the lead up to starting to college I went to meetings with him and had to be his spokesperson. College have been amazing and even with in 2 years he’s re gained his confidence and his latest CAMHS appointment he did most of the talking and was even able to give more than just one word answers.

He says he feels more confident asking for someone to repeat questions if he doesn’t understand what they’ve asked. He says that at school there were too many loud children and if he ever spoke he got shot down so gave up.

Also he finds conversing such an effort so will choose to opt out. But now he’s older we can help him out strategies into place.

I wonder if the shortened words are a case of your daughter has just had too much that day so that’s all she can manage?

For him I wish I knew the extent of the issues he was having with other children and how overwhelming school was for him. But he just kept a lid on things. But school were so proud of the “resilience” he built 🙄 (forced).

Needlenardlenoo · 26/04/2025 08:03

Just to add that I am a secondary school teacher and I have taught a number of students with difficulties speaking in class/to adults. From a practical point of view, one issue can be that while the regular teachers should know not to call on her, if there are supply/cover teachers they will not know. It would be a good idea to ensure your daughter always has a pack of post it's with her so if necessary she can scribble something on there.

With older students, I have encouraged them to email or Teams message me from a laptop but that may not be practical for a year 7.

Needlenardlenoo · 26/04/2025 08:04

@lalaandpohe sounds like an impressive young man!

lalaandpo · 26/04/2025 08:33

Needlenardlenoo · 26/04/2025 08:04

@lalaandpohe sounds like an impressive young man!

We’re incredibly proud of him, I carry a lot of guilt around secondary school - but I have to remind myself that we didn’t know the full extent.

Along side his current college course (level 3 media) he’s doing work experience (off his own back, doesn’t need to do it) in a secondary SEN school In the media department and is loving it.

So I hope that gives some reassurance and hope to OP that things can work out. Two years ago I never thought he’d be where he is now.

Needlenardlenoo · 26/04/2025 08:41

Well done to your son @lalaandpo !

Please don't feel guilty.

My friend's daughter was diagnosed with autism at around 14 and by then she had an eating disorder and was mute with everyone other than her parents (even beloved grandparents).

She is now succeeding on a university course and recently passed her driving test.

SMiRAliser · 26/04/2025 08:52

Hi
As you can tell from my username this is something I know about. It sounds like selective mutism, and like she is heading for progressive mutism which is where the SM extends into all speaking spaces. This usually reflects a person under great stress and is usually temporary. However I would be concerned about "school refusal" being likely - this is now mostly called EBSA (emotional barriers to school attendance or emotionally based school avoidance) and most LAs have a policy because it's a big thing in education post-covid. If you start talking about EBSA the senco might listen! I would also be putting in an EHCP request because I am afraid this is not something that will be solved overnight, and you and she will need some help.

For anyone incidentally reading this, it's called selective mutism because it's a 'medical' diagnosis and in medical terms selective is the opposite of pervasive. Pervasive means always and selective means sometimes in this context. So it isn't intending to imply choice; there is no choice or control - it's a reflection of a triggered anxiety 'freeze' response.

@Needlenardlenoo you sound like a lovely teacher, thank you for not assuming as some do that a child is choosing not to speak or being rude. You are doing the most important thing which is not putting young people under pressure to speak. Your little bit of CPD, lol, is that most kids with SM (especially the ones who are autistic) it's not just a speech inhibition (that's just most the obvious feature), it's a communication inhibition. This means that in the difficult space the child may not be able to use communication cards asking for the toilet or write post it notes and hand them over, as both those are communication initiation actions. Emailing outside the moment may be easier because the child may be able to do it when they are more relaxed at home, but some might not be able to even manage that. This is also why a lot of SM children struggle with extended writing tasks at secondary school. (Some don't, every child with SM is unique).

Best tip is to become a safe person by being chatty with no expectations to respond, treating them like normal kids outside the communication.

OP there is a very active Facebook page for smira with thousands of other parents and a fair few professionals. It's very supportive, and there are lots of free downloadable materials there too.

GoodVibesHere · 26/04/2025 08:58

If I could turn back the clock I would take my DD out of school. It's so many kids it's an extremely traumatic environment.

Needlenardlenoo · 26/04/2025 08:59

Thanks @SMiRAliser that's useful, thank you! I've had no official training on this which is a bit crap, now I reflect that I've had at least one child in class in this position every year...

During the debacle of the "teacher assessed grades" of 2021 I managed to get the whole evidence pack to support a student's grade by sitting in a room with her and communicating silently over Teams chat and later on in the term she came into my room and spoke passionately, for quite a while, about how excited she was to be going off to study computer science.

This makes a lot more sense now...

GoodVibesHere · 26/04/2025 08:59

That should say 'For so many kids it's an extremely traumatic environment'.

SMiRAliser · 26/04/2025 09:14

Needlenardlenoo · 26/04/2025 08:59

Thanks @SMiRAliser that's useful, thank you! I've had no official training on this which is a bit crap, now I reflect that I've had at least one child in class in this position every year...

During the debacle of the "teacher assessed grades" of 2021 I managed to get the whole evidence pack to support a student's grade by sitting in a room with her and communicating silently over Teams chat and later on in the term she came into my room and spoke passionately, for quite a while, about how excited she was to be going off to study computer science.

This makes a lot more sense now...

Yes, you became safe. Plus she was communicating about her passion. Autistic kids with SM can communicate more easily around their passionate interests, because those passionate interests are associated in the autistic child's brain with pleasure, happiness and low anxiety and that can (doesn't always, but can) override the anxiety-based communication inhibition.

One common pattern is kids who will answer short questions they know to be correct (- low risk answers) but can't answer if they aren't certain, or any extended answer, but then occasionally can speak when a lesson inadvertently taps into a passion. It's not surprising people jump to the conclusion they are "choosing" when they speak. Being able to speak to peers, or a group of peers, is also common. Whereas teachers, who require a more formal interaction style, trigger more anxiety.

There is training available and this is one of the most misunderstood cohorts out there (just look at any post on here where someone has encountered a person who routinely doesn't respond to them, often a child's boyfriend/girlfriend). If you have any traction with SMT I would really recommend full staff training :)

Needlenardlenoo · 26/04/2025 09:27

Thanks @SMiRAliser it would be great but sadly despite my best efforts absolutely no-one with decision making power is interested in SEN in 16-18 and that's the only area I'd have influence.

It makes me very cross.

picturethispatsy · 26/04/2025 09:35

Selective mutism is an anxiety response.
You need to be focused on the root cause of the problem and anxiety.

Have a look at the Not Fine In School website and the work of Naomi Fisher and Eliza Fricker.

https://notfineinschool.co.uk/

Not Fine in School

Not Fine in School is a parent-led organisation empowering families & raising awareness of school attendance barriers (school refusal/ anxiety/ SEND/ bullying)

https://notfineinschool.co.uk

healthybychristmas · 26/04/2025 09:43

Needlenardlenoo · 26/04/2025 07:53

Selective Mutism Information & Research Association

https://g.co/kgs/qhx1kF1

This sounds like classic selective mutism and you need specialist advice - not Mumsnet! I'm not an expert but I know it's an anxiety based disorder.

She isn't asking to be diagnosed by someone on here but it's pretty obvious that there are a lot of parents of children with special needs here and a lot of teachers who deal with children with special needs, so actually this is a very very good place to ask if someone has experienced something similar.

Needlenardlenoo · 26/04/2025 09:47

@healthybychristmas yes I know (Mumsnet is a fantastic resource) but the OP struck me as one of those cases where it could go downhill quickly into EBSA, so getting expert advice offline would be sensible.

Onceuponatimethen · 26/04/2025 09:52

Op I’m sorry to hear you and dd are in this situation. You are definitely doing the right thing to be looking at next steps. On that you’ve had really good advice here and I agree with previous pp that this sounds like she needs an EHCP and some professional input. If you want to talk this through with a SALT on the ican speech charity helpline you can book a slot with their lovely SALT John.

Sossen are a. Brilliant charity in the EHCP space and they also have a helpline you can call where you can talk through what to do on the EHCP side.

HarryVanderspeigle · 26/04/2025 09:54

Yes, this happened with one of my children, but at a much younger age, so no worries about the social side. It's not her trying to control you at home, so please do make it as easy as possible for her to not be forced into speaking. My chikd did start talking again, although never volunteers to speak to people outside the house unless they directly address him first.

Lots of resources posted already, so won't repeat that.

ChiefCakeTestertoMaryBerry · 26/04/2025 16:09

Thank you for all the replies and links.

My understanding of selective mutism had been that children would talk normally at home, but this isn’t the case at the moment with DD.

In terms of special interests, hers is horses and riding, and her key worker said she previously seemed happier and opened up when talking about this. I will raise EBSA again with school. I was hoping that she might have started talking over the holidays without the stress of school, but this hasn’t been the case.

OP posts:
SMiRAliser · 26/04/2025 16:54

ChiefCakeTestertoMaryBerry · 26/04/2025 16:09

Thank you for all the replies and links.

My understanding of selective mutism had been that children would talk normally at home, but this isn’t the case at the moment with DD.

In terms of special interests, hers is horses and riding, and her key worker said she previously seemed happier and opened up when talking about this. I will raise EBSA again with school. I was hoping that she might have started talking over the holidays without the stress of school, but this hasn’t been the case.

This is progressive mutism, a severe form of SM that usually indicates that someone is in a state of complete social/ sensory /coping skills overwhelm.

ExecutiveRubber · 27/04/2025 17:43

Not to disagree with everyone else here. But 12 is rather old for sudden onset SM, so I'd be wondering more if something has happened that she doesn't want to talk about?

SMiRAliser · 27/04/2025 17:48

ExecutiveRubber · 27/04/2025 17:43

Not to disagree with everyone else here. But 12 is rather old for sudden onset SM, so I'd be wondering more if something has happened that she doesn't want to talk about?

I think the OP says that speaking has always been tricky, leading to OP thinking her daughter had low profile selective mutism, which has now rapidly got worse on transition to high school.

If she used to speak "normally" and that has suddenly changed then yes, absolutely could be a trauma response (in a way progressive mutism is a trauma response anyway, but it's experience of school as incrementally traumatic rather than one particular massively traumatising incident).

ChiefCakeTestertoMaryBerry · 27/04/2025 20:00

ExecutiveRubber · 27/04/2025 17:43

Not to disagree with everyone else here. But 12 is rather old for sudden onset SM, so I'd be wondering more if something has happened that she doesn't want to talk about?

The not talking at home is new, but not talking to other adults, or talking very little to them, has been going on for a while.

OP posts:
SMiRAliser · 06/05/2025 08:31

Needlenardlenoo · 06/05/2025 07:27

https://www.spectrumgaming.net/post/sm-vs-rm hi OP, thought this might be useful.

Useful paper, but for context, this isn't official it is just a proposition - SMiRA 's view is that both of these presentations are SM (SMiRA never claimed SM was just a phobia of speaking or that graded exposure was the only tool to support). If people find knowing more about a 'reactive type' of selective mutism helps then that is useful, but it's not a separate diagnosable condition (nor is this paper claiming that).