Selective Mutism

[iluvchocolate2]

Ok may be long,
After thinking my child was very shy for the last 3 years (currently in Yr 2) I am gutted to realise she probably has SM. Didn't talk through Reception. Struggled to settle in Yr 1 and slightly more speech. Staff reassured me she was very shy, they were like it at school etc etc.

I have just finished a stressful job, which although part-time, involved lots of extra work at home and this has dominated my thoughts for past 10 months. After taking my child into school again in the mornings, it hit home to me how quiet and withdrawn she is. This has also coincided with her being very stressed about a few things around 'having to talk'.

So having never done before (yes I feel incredibly guilty about this) I asked her exactly who she talks to at school, who she can't, what she says, how she asks to go to toilet etc. Her answers confirmed my fears.

I spoke to Teacher & SENCO. SENCO said it's hard to know whether it's extreme shyness (she is like a casebook example for SM and also out of school). The Council's S&L Booklet quotes SM & states early referral is essential otherwise it can get worse.

I feel she is now entrenched in non-speaking as a coping strategy for extreme anxiety. She has friends at school who she speaks to and is happy to go to school most of time. Hubby reminded me that before school she wouldn't speak to strangers, especially the loud ones who expected her to talk.

Anyway my questions to you all are:-

1. Has anyone started home-ed for a young child who had SM and did they improve with speech at home/out and about. My child won't speak to grandparents and adults she has known years, or strangers.

2. Does anyone have a similar story where they tried referral to SALT or seeing a private Psychologist. I've booked to see a private Clinical Psychologist who seems to recommend going into school and working within the setting to help the child. I can't see how this would work when the treatment for adults with SM/Social Anxiety are CBT, clinical hypnotherapy, anti-depressants. I do not want to try AD's for her but talking therapies seem more sensible to me to reduce anxiety. Then of course take away the anxiety and home-ed! I am not against this idea and know people who have done it.

I don't know what to think my head is all over the place. Any advice/similar experiences anyone?

Thanks if you got this far.

Quite often this sort of thing dissolves once the primary stress (school?) is taken out of the equation. But I don't know anything about selective mutism, so I don't know whether I am encouraging you to be casual about something that really needs professional input.

Might it be that just being supported and nurtured, with you willing to speak for her when she wants (in the same way that a parent will scribe for a small child with low confidence in their handwriting) will be enough for her to gradually grow in confidence?

It might be worth reposting on the sen thread, there may be more people with direct experience who can help you xx

People also post about it regularly on HE-Special (he-special.org.uk/) so if you are interested in experiences of home educating a child with selective mutism, that would be somewhere to ask.

Have you joined the SMIRA facebook group? Definitely worth posting there for feedback.

Just do a search for this on FB:
SMIRA - Selective Mutism Information and Research Association

Also worth getting the Selective Mutism Resource Manual by Maggie Johnson & Alison Wintgens - pricey but it's the leading authority on SM at the moment.

The SENCO saying it may 'just' be extreme shyness seems misleading to me - if she is consistently not talking in certain situations then it's SM and needs to be addressed as such. Are the school suggesting any strategies to help?

Re school - does your DD want to stay at school? Does she have friends and seem generally happy apart from not talking? Is she anxious about other things?

Ask school for a SLT referral, (if they don't cooperate then you can self-refer). In some areas SLTs don't deal with SM, but they should be able to advise you on this. The SM care pathway seems to vary a lot by area which is frustrating, but keep at it and get some answers, don't be fobbed off by 'she'll grow out of it'. Good luck

Thanks everybody. Lots of good advice.

My daughter is fairly happy with school and whispers to most girls in her class. Unfortunately she is now very reluctant for any suggestions to help her which highlight her difference (even more) to other children which makes me think it if were spotted earlier this could have been avoided.

Its a complex thing which I am just getting to grips with.

Thanks again

I now realise that my annoying "shyness" as a child was selective mutism. In that I spoke to my immediate family & that's it, not even to my beloved Nana.

The way I personally got over it was turning very naughty at 12, I had a "persona" so then it was easy to speak as I was just cheeky or funny. Ever since ds2 has been diagnosed with autism I realise I am also on the spectrum and I can see part of the issues with me not speaking were 1. I had no idea what to say, I wasn't wholly sure what was being asked of me, it took (and still takes) a while to process speech. Also, I had lots of anxiety around saying the "right" thing when asked questions. With my peers I mostly hung around with incredibly chatty ones so I didn't have to speak much. I never picked up on social talking so I never did it.

In your shoes I would definitely see if it was part of a wider issue, like autism. Definitely a SALT referral to see if her language use and understanding is typical and if they deal with selective mutism.

I have worked in a school with a SM, the school allowed the mother to come into school at the most stressful times to support the child and make them more comfortable. It helped because there was a familiar face to talk to then they gradually started talking/whispering to other children, the mother would start to sit right at the back of the classroom and would gradually spend less and less time at school. This way seems to have helped the child a lot.

I have come to realise that Dd3 is probably struggling with SM, she has a diagnosis of Asd and has always struggled with anxiety.

She recently started writing a book after being inspired by a young person who writes books about having aspergers and she wrote

"Sometimes the words get stuck in my mouth, I have lots of things that I want to say but the words wont come out its like they are stuck!"

I was really taken aback when I saw what she has written and someone on MN special needs said it sounded like SM so I did some reading and it probably is!

We are going to be HEing for the next 2 yrs and one of our targets is to try to give her lots of hopefully less stressful opportunities to speak when away from home.

At home she could talk the leg off a table!!

I hope you can get some help for your Dd.

Thanks again for the extra comments on 27 June. There is usually a delay between my posts due to busy life etc.

My husband and I paid to see a private Clinical Psych last week who asked lots of questions and said my daughter more than likely had it but she hasn't actually put that in writing.

So I went to the GP today mainly hoping for a diagnosis. I am so glad my husband came too. The receptionist said bring your child, which we were concerned about. The GP completely ignored my daughter, said it's behavioural (she can talk in other situations, so she can talk!). My 7 year old daughter who is very intuitive just sat and listened to it all.

I asked if we could have an official diagnose or be referred to Ed Psych, GP fudged and basically said no! but maybe this was because I said the school had referred to SALT in past few days.

GP also said "did she have a traumatic experience with someone regarding her speech" by then I had lost all faith in any reason for us going to the GP.

She has probably had SM for past 3 or 4 years I have no idea if she's had a traumatic experience and loads of research I have read says this is not necessarily a cause. But even if it was, how's it going to help knowing what caused it anyway, I just want a cure/some help now for my daughter.

I was asking my daughter a bit about her speech a few days ago to try and ascertain exactly how much she says at school and she said "I am not like anyone else in school, everybody else can talk why can't I tell the teacher when something has happened, I just can't" in an upset voice. It broke my heart.

She's just had a friend round to play and they got on really well. Equal two way play. When her mum came to pick her up with brother, she described my daughter thus "she doesn't talk to anyone". I know my child is described as this by other kids, I just don't want her to be the one who doesn't talk.

I'm going to speak to some private SALT's definitely and ask for an assessment.

Thanks again everybody. Will keep you posted

GP sounds useless.

Private SALTS definitely a better bet (and NHS SALT is on its knees at the moment).

My youngest son (10) has always been incredibly quiet at school. I was stunned when I saw him - in the early years he really didn't talk at all, he'd just nod, or whisper, and his report received today was all about him not contributing and keeping quiet. He also walks around very stiff backed, looking like a soldier. Amongst people who know him at home he has a reputation for being extremely loud and demanding with his voice. Often described by us a 'strident.' As someone said when talking about my boys 'oh ds3 - is that the loud one who shouts and screams a lot?' He'd seen him at the beach a lot (so outside the home, but not in school). The difference between home ds3 and school ds3 does concern me (and god knows how he will cope with secondary).

He is better now, than he was in the earlier years - he has been described a few times as 'coming out of his shell' over the last year, so I'll be interested to see how he does in year 6, being top of the school so to speak.

He is an anxious child, and he has an older brother who is very severely autistic (non-verbal - whose ability to communicate depends on anxiety), so I have become fairly well versed in communication issues over the years.

For me, in ds3's case the issue that concerns me really is anxiety, and whether he's managing to keep that in check. However, although he is clearly very shy/quiet at school- and often worried about things, he does also seem happy & he isn't anxious about going (even if he panics about things he has to remember etc), so I am happy for him to continue there while that remains the case.

In terms of secondary I already know that if he doesn't cope I will pull him out and sign up to Interhigh.

If his inability to use his voice in school was still the same now, as it was in pre-school and reception/year 1, it would have been a problem. We did see a gradual improvement throughout those years. So I think given that your dd is now year 2, and able to describe her problems which sound ongoing you are right to seek help

I assume you know about ASLTIP for finding a suitable SALT. Do shop around a bit as well, it's such a specialist area and finding the right person is important.

My dd had sm for the first 4 years of school. She would talk at home but the school never spelt out how quiet she was so we didn't realise. She was a beautiful cute child who came across as a fragile shy little angel that the teachers didn't want to upset. Ecentually, as she reached , age 8, a new dynamic respite teAcher took the bull by the horns and sid , enough, you need to sort this and spelt out how dehabilitating it would be for her to continue.

We never realised. She is nowhere near the autistic spectrum. We brought her to a clinical hypnotherapist. He said she wasn't shy, just angry. A teacher told her in junior infants to be quiet and accussed her unfairly of talking out of turn. So she shut up literally. Then she got stuck and got anxious about speaking as the years went on. He helped her deal eith it and sid some hypnotherapy. We worked with the teacher but didnt fo in. One day she stood up and read in front of the class. Her classmates gave her a standing ovation. She never looked back. It can be fixed, your dd is just stuck and probably wants to be lime everyone else. She just needs some professional help to give her that boost and confidence. You will find the other kids will be very supportive. Forget that gp. Best of luck.

I'd be wary of the description of a SM child being SM due to 'anger' - this implies that the SM is a deliberate and manipulative behaviour which it certainly isn't, it's all about anxiety - SM is an anxiety disorder.

Personally I don't think it's helpful to look for events which 'precipitated' the SM - you'll never really know whether it was eg a teacher's remark or something the child saw on TV or nothing at all.

The point is that the child is behaving in an atypical way and even if there was an identifiable trigger then the SM isn't a normal reaction to an everyday childhood event such as being told off for talking.

Traumatic mutism (being 'struck mute' by a traumatic event and unable to speak at all) is very different to SM in that an SM child can speak perfectly well when not stressed.

Re autism, SM is a common co-morbid condition of autism, so although not every SM child is autistic, it's something which should be taken seriously as a possibility.

I explained that sm was initiated due to anger issues but was then continued due to anxiety issues. I would be wary and am totally exasperated that every school mental issue arises due to a child being on a so called 'autism spectrum'. It is a total cop out.

Hi op, I have an am son starting reception in September. I mainly wanted to respond as you sound like you are panicking and I remember that feeling when I put all the bits together and realised that was it. We have had some success with creating crossovers between environments where he will and won't speak, e.g. Nursery staff ring home and speak to.him on the telephone. We are hoping that the change in environment might help, ae reception is different location from nursery. Strangely he is not an anxious child and is very confident even when he is not speaking! Because of this we have occasionally completely disregarded all professional advice and bribed/pushed him a bit. It has worked bit wouldn't recommend with an anxious child.
I.do agree with the advice of working within the setting. Kids are a totally different ball game than adults and strategies would be to draw attention away from it, rather than to discuss it as you might with an adult.
Wishing you all the best op.

I don't understand how any clinician can identify for sure that the root cause of a particular case of SM was 'anger' about an incident at school several years ago - how on earth would you prove this?

It's fantastic that your DD's SM has resolved over a short period of time, but in a lot of cases it's down to time and lots of small steps in building confidence, and sometimes it can't happen without interventions such as medication.

I also don't see that 'school mental issues' are routinely put down to autism, a lot of schools put difficult behaviour down to naughtiness, stubbornness, immaturity, bad parenting etc, it actually seems to be very difficult and time-consuming to get proper diagnosis and support for ASDs unless the disability is very obvious and clear-cut.

I agree with wafting. Also anxiety is a funny beast - I took a while to realise how anxious ds3 is because he is so strident & opinionated & able to stand his ground at home. It was only later that I realised that was anxiety driven as well.

I agree with wafting too, my Dd3 has autism, it took 3.5 yrs of assessments before a psychiatrist who was clued up about girls with Asd finally diagnosed her, she was 9 by this time!

Her autism or likely SM still havent been recognised properly at school and now she is out of school all together!

Thanks all again.
Even more of a gap in reply now!! due to being busy trying to contact NHS SALT and seeing SENCO again.

perfectlybroken - yes I am panicking because I feel my child has been let down and something could have been done earlier (which all the research confirms)

Jboure - can I just check. You took your daughter to a clinical hypnotherapist aged 8. Did it help, how many sessions did she have. Was she stressed after. Did you sit in on the sessions? The Clinical Psychologist I saw said hypnotherapy isn't recommended as children's brains haven't developed but I am sceptical of this and I saw a boy on Youtube aged 10 having Prozac and it helped him immensely.

It's ok experts saying the behavioural approach is better for children but if your child goes to a school where all the staff are not following the behavioural approach, I can't see how this can work. I get the feeling some staff probably don't talk to her any more (my daughter has slightly confirmed this). She went to the library last week to change her book and I said "did you say anything to x" the TA who facilitates the library. She's been there years is kind and quietly spoken. My daughter replied snappily to me "no, because I don't talk do I".

Regarding anger. I can understand people's thoughts on this because my daughter's response to people speaking to her is a grumpy expression, followed by quickly moving away. She often moves through public places near school, in school and other areas just totally ignoring everybody.

SALT will be seeing my daughter (hopefully, dependant on workload!) in September at school to observe. Which is all I've ever wanted as unfortunately I cannot trust school now. They have a child with this higher up the school so they know about it.

I had a meeting with the SENCO and next years teacher few days ago and I said whilst looking at the SENCO, I don't actually know who my daughter does and does not talk to and she just looked back at me with no answer.
I asked if she could start in a friends group again (she was in one at beginning of Yr 2 for 7 weeks only) and she said yes but I had to ask for this.

After leaving the meeting I realised I hadn't even asked for an IEP. Should I be asking for this even? I get the feeling the school won't do anything specific until after the SALT referral.

A lot has been said along the lines "we don't know if she is just extremely shy or if it is SM". However, whatever it is, my daughter is not like the rest of the children, so in my mind there is a need. However I suppose it they can say it's not SM then there will be no need for extra interventions with there?

SENCO said her levels were 2 for Maths and English on the SALT referral form. So I got a bit obsessed about these (I know they aren't even being used from Sept). I've heard of spiky profiles and P Scales. I don't see how a child can be assessed as Level 2 (note no a, b or c was put in) when my child doesn't hit some of the P Scales (ie, initiating conversations, making eye contact). Grrr

Just noticed a few spelling mistakes in there - soz.

I've joined the facebook SMIRA page, but I'm not good with the workings of Facebook. I don't want to post a message on there and then all my friends to see it.

Yes - ask for an IEP.

My very shy boy often blanks people who speak directly to him as well.

I've just looked up the smira facebook page (am not a member) & it is showing as a closed group - so anything you post there will only be seen by other members of the group. Your friend's won't see it. That's only the case of it's an open group (in which case the posts have a globe next to them).

Thanks 'saintly'. Back to the SENCO again. Not looking forward to it.