selective mutism? Anxiety? Aibu to see the doctors?

[Anonymou574]

I have been getting more and more concerned about my dd this past year particularly. She is 10yo and has always been a quiet shy child. There is times when she will freeze when being spoken to whether at home or at school. Can be something as simple as asking what she wants to eat? Or if being asked a question at school or when asked if she has brushed her teeth etc She will literally go silent and sometimes cry or have tears falling from her eyes.

I've tried talking to her the school have tried talking to her she does various types of things at school but nothing is helping. She has been this way since she was 2yo (literally documented from nursery) so I know for a fact it isn't hormones I just presumed she would grow out of it but it's getting worse. She starts high school next year and I'm so terrified. My friend keeps saying o she would grow out of it stop trying to label her it will make the situation worse but I now feel like a terrible parent because I haven't got it checked sooner.

For context I have three dd she is the eldest and has 7yo twins.

sounds very difficult, I think you are right to take her to the GP and ask for help

Diagnosis are to help not to label, your friend doesn't know what they are talking about.

I was searching for something similar today as teen DD has recently been diagnosed with ASD, and has started to say that quite often she simply can't get the words in her brain out of her mouth it's like they are no longer connected. It's not something I'd particularly noticed at home but it's just the two of us and she's quiet anyway.
Something DDs school do for her (not related to this particular issue) is not put her on the spot, the teacher asks a question and then moves on to another student and comes back to her later for the answer, DD says this helps.

Yes, you need to go to your GP (with a full history of your DD's differences etc.) and start investigating what is going on, the sooner the better. Your friends sound like they don't understand the difference between a diagnosis and a label, which is unhelpful.

For starters don't feel like a terrible parent, it sounds like you've tried to work with school to find something that works and nursery were also aware, it's not like you haven't done anything. Supporting your DD which I'm sure you have been is the most important thing. Diagnosis isn't just about a label (although that can help some come to terms with and understand their condition better), but it's about being able to access support and knowing what you can do to support her.

Also yes to GP, let school know you are and then if the GP requires any further info on her at school they can hopefully assist.

Thank you all for your reply she made me feel so small like I'm trying to give her the problem or label her as having a disorder.

It's very much like @Singleandproud said she looks like she's trying to talk and simply can't get the words out at all so then cries. I'll be booking a doctors appointment for her and seeing if they can help me.

I think the NHS page on selective mutism is quite helpful, have you been able to have a look?

I'd make a GP appointment, yes. I'd also ring up your local children's speech and language therapy service and find out if they work with selective mutism- some therapists do, some don't. Also get them to give an honest waiting list estimate.

If they don't or if the wait is too long, CAMHS might be next. Tbh I'd probably scrape the money together to go private with a psychologist given she's changing schools soon, but Id give the NHS a chance - it would help if she's in the system IMO.

YANBU to see the GP. You can also ask to talk to the SENCO at school. You may want to discuss a referral to speech and language therapy for assessment and advice if this is available.

Many GPs and even schools will not be very knowledgeable about selective mutism, even though SM is not as rare most people think. You may want to do a bit of your own research first so that you are able to advocate effectively for your daughter.

SMIRA (selectivemustism.org.uk) has some free information and resources on their website. "The selective mutism resource manual" by Maggie Johnson is a fantastic resource.

You may want to have an open discussion with your daughter about this in a casual and non-judgemental way if you haven't already. At 10 she will be very aware of it so avoiding the topic can make it seem taboo. Most children and people with SM say they feel better when the problem is acknowledged in an empathetic way and when they are given choices and control over how it is managed.The resources above provide advice on how you might want to go about starting a discussion.

Labels can be helpful.
Expecting your child to grow out of this probably isn't going to happen.
I would definitely seek proper advice.
The child I know with selective mutism (similar age) has recently been diagnosed as autistic. Knowing this will mean she actually gets appropriate help and intervention.

Sorry -- of course that's meant to be "selectivemutism.org.uk"!

Your daughter has a problem which is going to be increasingly disabling for her and cause her real difficulties and unhappiness in life if she dies not receive help to learn how to manage it. She’s ten and can’t be expected to have the cognition or knowledge to learn how to cope and manage this condition herself. She needs professional, adult support to do this.

Your friend, frankly, is an idiot, even if well intentioned.

You need to seek out proper support for your daughter. Given the state of the NHS I would be looking to go private if you could afford it ( though I would go to the GP Monday too. No harm trying both routes to see which is better).

www.selectivemutism.org.uk/about-selective-mutism/ I would also like to recommend this page. I have a friend whose daughter has suffered with this and I know she's found them helpful.

Speaking as a SEN mum (not the same condition), it's outside most people's experience so they say unhelpful stuff).

Joining their Facebook group would be helpful too - you can find other parents that way and they will get it

My daughter had selective mutism at nursery. It snowballed very quickly. She still struggles sometimes. We had to change nursery. Definitely rooted in anxiety for her. There is loads of ways to help but we needed profoessional help to know what to do as often what works best can be almost the opposite of what people instinctively do. We got help via health visitor so I would definitely say GP would be a great first step and they should be able to signpost you to additional support. We also got private support via a speech therapist which was very useful… not all speech therapists are as good as others though we found so we tried a couple before finding a great one.

Also the name is awful. Selective mutism is the total opposite of selective!

My DS (age 7) is the same. He has been referred to CAHMS.

He panics when faced with any instruction so people think he is not listening. All instructions need repeating. He is really bright but can't process instructions without lots lf clarification.

He then either freezes (shuts down), cries or runs and hides.

He hates being 'told' things e.g. clean teeth, get ready for bed etc...

Depending on your area a SM diagnosis can be really hard to get. There is no harm in seeing the GP but ours was awful we got much more help from our SENCO. Speech and Language Therapists can assess for SM but they generally don't offer treatment and it's not a Speech problem, CAMHS can help with anxiety but tend to require face to face engagement so it can be really challenging.

SMiRA Facebook page and website are amazing and have loads of information and things you can try to help. Lots of schools will introduce interventions without a diagnosis so well worth having a look through websites and talking to your SENCO.

I believe it used to be called "elective" (chosen) but was changed to "selective" (some situations - as the children affected can speak).

Something else to consider is that she may be silent block stammering. A referral to speech & language therapy would be a good place to start with either stammering or situational mutism (which is increasingly the term used for selective mutism). If you decide to go down the private therapy route, ASLTIP can help you find someone asltip.com/

I don't know why you wouldn't go to the GP.

We had similar. I spoke to the SENCo who helped with a referral to SALT. They did an assessment and she was diagnosed with reluctance to speak rather than selective mutism.
Even so, this info was sent to secondary and they made teachers aware and had strategies to support.
My DD's issues are definitely anxiety related but I've worked with her and the school put in strategies and support and she has made progress.
It did take a few months but was definitely worth the wait.
Hope you can get some appropriate support for your DD too.

Speak to her SENCO and ask for a referral to SALT. The school should have a link therapist who can do an assessment - I'd expect this type of thing to be able to happen quite quickly (within a few weeks) unless the therapist is already at full capacity in which case it could be more tricky (I'm a SENCO btw).

Selective mutism can be associated with Autism although not always. Definitely worth a visit to your GP, ideally with your dd if she can manage it. In some areas though (where I live for example) referrals for assessments for autism involve a lot of hoop jumping and generally come from school not GPs because it’s all about what school have done to try and improve the situation so it makes sense that it comes from them. It’s a completely rubbish situation and only picks up a small fraction of kids that need seeing.

In terms of labels I think they can be helpful. Other people will be giving her labels regardless (shy, mousey etc) and she will pick up on this and start to label herself. If there is an issue then having the right label to help her manage it and the people around her understand and if necessary make adjustments to how they/she do things is helpful.

I’m a GP and 10 year old ds going through assessment for autism currently.

I've read all the replies and have realised that I have failed in not seeking more help for my dd. I've noted the websites down and will be booking an appointment on Monday and speaking to the school senco. One of my other daughters is currently being assessed for adhd and asd I'm starting to think I didn't put enough thought into my eldest as no one else expressed much concern when I brought it up to the school. I genuinely feel horrible and sad that I've let her get this far without proper help. Thank you all for your replies.

💐 don't- you haven't failed at all. It sounds like you have discussed and tried things at nursery and school, and those things haven't quite sorted things yet. So - on to the next step. I'm sure things will improve.

This is me im
40 when people speak to me it’s like I’m behind a wall the words are all in my head but I just do a complete shutdown people think I’m rude but I’m not it doesn’t happen everytime but I’d say twice a day it’s very embarrassing but I can’t help it I’ve always been like this but seems to have gotten worse over the last x years