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.

Does anyone know how to self refer to speech and language therapy? And what if your child lives in one county, but goes to school in another one? Which county would you apply within?

I think self referral depends on where you are, but a quick Google should hopefully bring up results for your area.

@UnfinishedBunting

Does anyone know how to self refer to speech and language therapy? And what if your child lives in one county, but goes to school in another one? Which county would you apply within?

I know the answer to that one. Whichever one your doctor is located in.

I live on the boundary between 2 London boroughs. Doctors was in one, home address and preschool the other. We had to go with where the doctor was based.

Thanks both!

Self referral to SALT can vary depending on where you live. Unfortunately in my area there is no definitive route for SM. Her paediatrician tried CAMHS who rejected the referral saying it was not their area. She was then referred to the healthy families team (or something like that) and they were pretty useless as they had no clue about SM. So we went private and it's the best thing I did. I don't have a lot of money and I'm working overtime to pay for her sessions (£70 a time) but it's the right thing for her.

I learned during the research that she participated in that there's huge differences across the country in terms of treatment pathways. Unfortunately we're in one of the areas where there really isn't anything, so I've had no choice but to pay.

My son and daughter both have SM which is part and parcel of their autism. It's hugely debilitating at times. They have both benefited from speech therapy in their independent specialist schools but SALT input through NHS was pretty poor tbh. Both of them find it easier to communicate in text so they send me notes, texts and emails when it's something they need me to know.

I have autism and struggled a lot with this as a child, I still can't speak to strangers most of the times but have set my life up in a way that, that contact with strangers is minimised and i just can't speak when stressed. It's why I like forums being able to communicate with others and it's stress free!

We got incredibly lucky with SALT here. They have been fantastic with DD.

It's why I like forums being able to communicate with others and it's stress free!
Im autistic without SM and even I prefer forums to RL. Much easier

My Ds (17) has SM and ASD, it was extremely hard for him in secondary school, his SM made him a target for bullies and he'd cry and beg not to go . After many meetings and the school really was helpful, he just couldn't cope anymore, so much so that after 3 months of secondary I pulled him out , I couldn't put him through that any longer, after a year of homeschooling, we managed to get him in a special needs school, he is very intelligent but we had to make the decision on education or mental health, he still struggles a lot but at least at this school his teachers understand SM . He's manages to say a few words to teachers which is something I never thought possible, he's gone through his whole life without having friends , i think this affects me more than him , I worry so much about his future .

We were told that as it’s not a speech issue per se, ie he was perfectly able to speak (just only in certain situations) that SALT couldn’t help but that in theory it was CAMHS area but of course that wasn’t worth pursuing as they don’t even have enough staff to see all the children/teens whose mental health puts their life in danger. For us the key was getting his teacher and the SenCo on side so that they brought in the Ed Psych for advice (effectively because his mental health was affecting his education) and allocated a significant amount of the ELSA’s time to him.

My son has SM with ASD. He is now 18 and will still only talk to me.

SALT have been utterly clueless. He had 5 during primary who saw him 2-3 times then all gave up. I haven’t been able to sort one since he was 9, despite him being in SEND education since then.

He can’t answer the phone and will throw himself into the kitchen if someone knocks on the door (so they can’t see him),

[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]
It sounds like it’s maybe traumatic mutism that you have?
People don’t choose to have selective mutism.
It’s been mentioned on this thread by others and it’s worth repeating - for people seeking support and to learn about selective mutism the best UK resource is SMIRA (Selective Mutism Information and Research Association) they have a website and an active Facebook group.

@UnfinishedBunting Thank you.
@HerRoyalRisesAgain Thank you

I've just read through the thread now and so many posts here speak to my experience that I've shed a few tears. Can't copy and paste them all to agree with but thank you for this thread. I'm very happy people are getting to know more about SM.

@Twofingers it is SM, long since diagnosed since I was a teenager, having started when very young, and treated for the related trauma and other severe MH issues as an adult by many specialist services.

Choose was probably a very bad word / I phrased it crappy, so I'm sorry, i can see why you've responded the way you have. I don't mean I just choose to not talk. If I can't talk, it's absolutely impossible and not going to happen, there's no choice there.

When I said choose, I meant that whilst I'm being treated for all the related things (which I bloody difficult and I really don't enjoy what I'm having to do especially at the moment ), I choose not to address the SM. So I meant I'm choosing to continue letting it happen without attempting to get treatment to lessen it (but when it happens I don't have a choice ; I'm not choosing to not speak, I can't )...
It brings me some control over the way I feel. Knowing that when I feel the way I do when I know I won't be able to speak and participate in a situation, no one is going to try to make me change that. I've been doing it for a very long time 30 odd years, and whilst I did used to get in trouble for it when younger and thrown out of lessons because teachers thought I was being rude and insolent (I actually ended up being excluded and then expelled for that and anger issues, all related)... As an adult I don't get in trouble. As an adult I have family and friends who understand, and so I choose to get treatment for everything else, because I need to do that, for my own children. But I choose to continue letting myself be SM without getting treatment for that, because when I'm silent, I feel calmer and in more control. I have no choice though. I either talk or I don't. I can't pick and choose.

Hopefully that makes sense, I absolutely understand why you said what you did but I have been diagnosed for decades and any professionals I see, of which there are a lot, maintain that SM is the diagnosis.

It would be great if there was an ongoing SM support thread - this would definitely be helpful to me, and hopefully to other people as well. I'm not sure which forum this should be within though 🤔. What do you think @HerRoyalRisesAgain?

^Just to add, this thread is in Chat, so I think it will disappear after 30 days.

There's the SN boards but they don't get a lot of traffic

I’m just placemarking as i’ve only got time to read the first few posts.

Op, thank you for posting this. Dd has ASD and PDA syndrome and despite numerous meetings with doctors and speech therapists no one has ever mentioned this could also be a possibility. I do try to reduce things in her life that cause anxiety but half the problem is when I ask questions to try to work out what makes her anxious she doesn’t talk! Anyway I’ll have a read of the thread later as the subject could give me new ideas on how to support her.

My 2yo DS is extremely anxious around strangers and can't/doesn't talk to people he doesn't know well but he will talk to me in front of people. He's still learning to talk though so is it too early to tell if it's selective mutism or just shyness/anxiety? He's not in preschool yet, partly because of this, so I'm not sure what he will be like in that kind of environment. When he's around strangers he kind of sticks his tongue out and I'm not sure why that is but it seems to be a sign of anxiety.

@UnbeatenMum I knew when DD was 2 as she couldn't speak to anyone but me. She didn't get a diagnosis until she was in preschool though.

My poor DD lost her voice today. She had a hospital appointment and was fine talking to me in the waiting room but as soon as the doctor called her through she ckanmed up, couldn't even speak to me and then when the doctor left the room to grab something she broke down in tears because she wanted to tell the doctor her tummy hurt when he prodded at it but she couldn't. She couldn't even cry in front of him. When he came back she went quiet again and just silently sobbed in my arms as I explained to the doctor what was up with her

13yr old DD does this. She rarely even speaks to family.

@HerRoyalRisesAgain thanks, that's interesting. DS does speak to his grandparents and a small number of other people. His social anxiety seems quite extreme though. E.g. he will not do any activity at groups if there's an adult there who might talk to him and will cling on to me or put his face on the floor and seems terrified. He will happily do the same activity if no one else is nearby. Possibly not specifically related to talking though.

Sorry your DD had a difficult time at the doctor's, that sounds really hard.

Thanks for posting this.
I think my 12 yr old may have selective mutism, after reading this.
He has autism and severe social anxiety. He only speaks to me and his dad and gets very upset ( crying) at the thought of having to speak to people.
He recently started some therapy and 4 weeks in has still not spoken to his therapist.
She has mentioned quite a few times that “ I have not heard you speak yet” and “I don’t know what your voice sounds like”
Last week she told him that she just wanted him to say hello and goodbye this week when he sees her.
I don’t think he is going to do it. He cried after last weeks session when he got home thinking about going this week and having to speak this week when he goes.

@HerRoyalRisesAgain, oh no, that sounds awful for your DD and for you. I hope she's relaxed now, and having a better evening. Might a backup like a phone or notepad to write in during appointments etc.?

@UnbeatenMum, your DS sounds a bit like mine! DS doesn't want to do anything when he thinks that people will be watching him. I think I read that this could be due to the possibility of an associated expectation to speak, but I wonder whether it might be low self esteem.

@Bobrosspaintbrush, that sounds like the opposite of what your DS might find helpful. Does the therapist have any experience of SM?

I've @d people, but maybe this is annoying. I can just bold the names if that's better.

I dont mind if you @ me.
DD is much happier now after going to school for the last hour, and seeing her best friend. They are complete opposites in every way, DD is small and quiet, tomboyish whereas her friend is tall and extremely loud and a very girly girl. I think DD likes that friend will speak for her if needed and friend doesn't mind that DD whispers sometimes. They're great together.