Selective Mutism - any advice?

Hi Viktoria,

Thank you for your reply but as I said they both attended SLT up to the age of 8 when they were signed off because there was nothing more that could be done by SLT. My son(S) are also 15 years old but the one who I suspect is selective mute was diagnosed with Auditory processing disorder first at Great Ormond Street Childrens Hospital (We live in [Removed by moderator - Rule 3], Scotland) so yes I did plod on for a very long time because neither of them were diagnosed with Aspergers'/Autism until they were 12. Up here (Scotland) that is there are a group of professionals including a SLT, Ed Psych, Child psych, Paediatrician as well as an assortment of other professionals who make up the joint support team (JST) who make a formal diagnosis, having said this CAMHS misdiagnosed both my sons so I have VERY little faith in anything they have to say.

 My child's School and Ed Psych are still claiming that because he will answer questions that he is NOT selective mute and he was very clear about that so again I have extremely little - no faith in professionals these days. I am glad that you have had some answers although I am sorry they came about in such an extreme way. The route that your son took whatever way it was to land him in a psychiatric ward is the only way that my son will be seen by CAMHS so I will continue to plod on and give both my sons the support that they need without the help of CAMHS because they are useless.

I hope your son gets better soon

Jane

Selective mutism!

I suffered, or should I say, I was that way for years as a child and still occasionally have the problem.

But why ?????

Not knowing what to say.

Being ridiculed or shouted down when trying to talk.

Just don't see the point in talking for the sake of talking.   This is similar to not understanding Smalltalk.

Well first of all, well done for ploughing on with the ASD assessment.  I wish we had done that when our child was 8 years old.  I complained for years to his school that he appeared to speak a lot at home, but not to anyone at school, and that he did not see any friends outside school.  They just made noises about it seeming to be improving a little, and just left it.  

I finally took him to see his GP when he was 8.  I took in a leaflet about selective mutism to show him as well (apologising for bringing in Googled material to a doctor).  At that stage I knew very little about autism, so I didn't suspect it. The GP saw our child, spoke to him a bit, and then said "he's OK, he's just quiet, there's no point referring him to CAMHS".  Four years later he was in a psychiatric ward in hospital, and finally got his Aspergers diagnosis. 

Our child (now 15) still doesn't speak to strangers much, but he is able to answer questions.  But he has more serious mental health issues, so we can't really worry too much about this any more.  All I can say is that you will probably be amazed how much your child changes when they get to the age around 12.  Try and get to see a Speech and Language Therapist.  You might need to go through CAMHS to do this - where I live, usually an SLT would do the actual autism diagnosis anyway.  I've no idea why, I would have thought a doctor would diagnose it, but there you go. 

The advice on the first page of the Autism UK site lists the types of sensitivities that people have. This is useful to help determine what fears/senses are causing the problem. One of mine is I have an acute sense of smell and alexithymia. I had SM from ages 2-6. I am 61 now. I remember now that I was aware/fearful of everything and when someone talked to me, my reaction time was reduced because of this fear (due to the proximity of someone (smelly) being close to me) and by the time I was ready to respond the moment to respond was over. Over time, because of this delay, it was easier to stay silent. Read "Selective Mutism in our own words" by Carl Sutton and Cheryl Forrester ISBN 978 1 84905 636 6. A safe environment to talk is home where environmental conditions are known (familiar sounds, smells). A new environment like school for an SM child can only be understood by someone who is maybe partially aware (empathic)of the child's sensory environment. Some well-meaning NeuroTypicals (ordinary normal people) are unaware of themselves (smell - e.g. cortisol, pheromones) to be able to help. 

Hi Jane,

It's the Selective Mutism Information and Research Association. I tried to paste a link but there seems to be something up with their website, so couldn't access it, but they have a Facebook page with a lot of information and advice documents, as well as the chance to post questions.

Good luck with it - hope you get the support and answers you need.

Hi Pageant,

Thanks for the advice, I am not on the discussion forum much and dont quite know my way round it so apologies for the lateness in replying to you.

I found CAMHS as helpful as an ashtray on a motorbike because they originally misdiagnosed both my twins so they won't be terribly helpful with this due to the fact that my other twin son has been knocked back 3 x from them with regards to anxiety issues. Said that if he wasn't suicidal it wasn't criteria for them to see them!!

Could you tell me a bit more about SMIRA? Do you just type SMIRA into google and it comes up or is there a full name for it?

Thanks

Jane

Hi Jane,

I think it's possible it could be selective mutism - as you say, the key thing is the element of choice. I think it's hard to tell with ASD children because they're not always in tune with their own motivations. They may report something as a choice because they know it's physically possible to speak albeit fear prevents them speaking.  There's the bravado element with teens too - not wanting to admit they're crippled by fear, so claiming they choose not to instead.  

So not necessarily a choice in the true sense.  You could probe the issue further - maybe ask what your son would do in a hypothetical situation where speaking to a teacher/club leader would bring a big reward of some sort if he gave a verbal answer to questions they ask.  If the motivation is rewarding enough, you might expect your son to say he would speak to gain the reward. If selectively mute, no amount of reward would cut it (and I wouldn't recommend offering rewards for speech - this is just to gauge your son's reaction to a hypothetical situation, if possible).

Ideally, if you can afford it, you could seek a professional opinion from a private speech therapist with expertise in SM (and, ideally, ASD too). But they're few and far between. The NHS may have something to offer, but that certainly wasn't my experience.  CAMHS will likely show no interest if they think there's an element of choice because they'll see it as ASD related. But I haven't found our local CAMHS terribly clued up on SM at all, so I'd be wary of taking their advice at face value if you have your doubts.

Amother key factor is how different your son is at home compared to other settings. If he's much more talkative at home than elsewhere, that may suggest SM is worth investigating. The trouble is that experts and professionals with a vested interest in doing as little as possible to help your son or provide resources will likely tell you everything is fine.  But if you're worried, I'd investigate further - maybe start with SMIRA which has a useful website and Facebook presence.

Best of luck with it - my daughter continues to improve, but her ASD complicates progress with the SM, so a way to go yet...

Hi,

My 14 year old twin son has been diagnosed with Aspergers but I believe that he may be suffering from Selective mutism as well. He won't speak in certain classes voluntarily, he won't speak at any of his clubs he goes to especially the leaders and refuses to speak to drivers on public transport or in shops when he needs to get anything. This has been going on for a number of years well before he was diagnosed. He was diagnosed with Auditory processing disorder first when he was 10 and it has been going on since he was a toddler. He was a late talker and had speech and language therapy for a few years. However, when asking him if he chooses not to speak or if it is because he feels nervous speaking he says yes to both. So if he is choosing NOT to speak, can this be classed as selective mutism?

Thanks

Jane

My daughter has selective mutism, ASD, general and social anxieties, slow processing and is a school refuser.. You can get help from speech and language ,ask the school nurse to refer you. We have been under CAMHS but found them hopeless, I wish you the best of luck, it really is a hard struggle but don't stop fighting for your daughter 

My daughter has selective mutism, ASD, general and social anxieties, slow processing and is a school refuser.. You can get help from speech and language ,ask the school nurse to refer you. We have been under CAMHS but found them hopeless, I wish you the best of luck, it really is a hard struggle but don't stop fighting for your daughter 

Hi Pageant

Hopefully you got my email details from the NAS community admin?

Just wanted to say we have put forward the IPSEA letter requesting Statutory assessment and had a response the very next day - refusal to assess - they didn't take much time to think about that! 

We would have to appeal now - I think that is what you said you did?  I have downloaded the info pack from IPSEA website but it all seems very daunting and scary - having to represent myself and get all the evidence, ask questions, get witnesses etc.  I think I will have to try my best though otherwise I will be letting my daughter down. 

Any pointers gratefully received.

Best wishes

Hi again Pageant

I have just had email response from admin who said they could pass information onto me from you.  I have replied by giving them my email address asking them to pass onto you.  If they pass it on I would be grateful for any more info you have on what was included in your daughters statement as you mentioned.  

Thanks again for your help and advice.

best wishes

Hi Pageant - thank you so much for your reply, it is so helpful to me and although I wish you hadn't been in the same boat as we are now, it is kind of reassuring to know that you were and that it is possible to get out of that boat!  I am encouraged by your advice and experience that pressing ahead and requesting a stat assessment ourselves as parents is the best next step to take, tough if the school don't agree!  I shall start looking around for a private SALT or Ed Psych assessment too.  I had mentioned this to school at the start of Year 4 anyway but they had said it was not necessary and M was doing well.   Clearly not doing that well as no progress made! 

It would be great to have your email but I know we can't do that here.  I have contacted NAS to ask if we can exchange details off public forum but not had a reply as yet. 

Thanks again for your help and support - it has made me feel so much better and less confused. 

Well, frankly, it's just not good enough for the school to say they don't have the time/resources to devote to this - school governing bodies are under very strict legal duties to ensure the special educational needs of the children at the school are met.  If they need more resources, they should be applying for an assessment themselves and/or calling in help from LA/specialist services/NHS and so on.  Having said all that, my daughter's primary school didn't devote anything like as much time/resource as they could and, by the time she got a statement in year 6, transition was too near to make any significant improvement before secondary transfer.  Secondary school have been fantastic however - they don't let NHS/LA off the hook with vague advice/insufficient support; the 'associate SENCO' is going on the two Johnson/Wintgens SM courses being run at UCL in March/April and they're fully supportive of me getting as much external help as possible to assist with putting in a programme of support.  It should have all happened years ago and their job has been made much more difficult as a result, but at least they are doing what they can now.

On the referral to GOSH - that was for the autism assessment (no I'm not local - on Essex/Suffolk borders). The local paediatrician said she couldn't do the 'normal' Autism assessment on a child who didn't speak, so referred for specialist assessment.  It was the child development clinic at GOSH - a multi-disciplinary team with paediatricans, SLTs and clinical psychologists all working together.  They were fantastic - unfortunately, the only fantastic experience I've had from the NHS.  I got shoved from pillar to post locally between CAMHS and SLT services - might as well have phoned the Samaritans for all the useful support they provided until I gave them no choice with tribunal proceedings.   Even then, the supposed 'unlimited' weekly 1.5 hours input from the SLT is going to end after 12 weeks, with the school insisting she keeps up regular visits to monitor progress and me facing the prospect of enforcement action against the LA if they don't deliver on statemented provision. 

Does your daughter have autism and selective mutism?  If both, then that's going to complicate the SM intervention I would have thought.  'Aspergirls' by Rudi Simone has a chapter devoted to mutism and puberty - spectrum girls and mutism do seem to go together...

If I were you (and I was you when my daughter was in year 4 - so do learn by my mistakes!), I'd:

1.  Get on IPSEA's website, download the template 'Request for Assessment' letter and bash it off without delay.  In the meantime (if you have resources - this all costs - heaven knows what families do who have no cash to spare...); research SLTs or other professionals with SM and (if relevant) autism experience and have your daugther assessed, with a view to getting a tribunal-friendly expert report setting out recommendations for provision/intervention. 

2.  Even if the LA concedes a statutory assessment, when it comes to specifying provision in a statement, they will be vague to the point where you'll have nothing to enforce - so your private report will come in handy at that stage.  It will also come in handy when haranguing the school for more action.

3.  I got fobbed off for far too long with the kind of vague 'help' at school that it sounds like your daughter is getting.  For entrenched SM, they need to look at the chapters in the SM manual that set out what a structured programme of intervention looks like and be asked what their plans are for putting something in place that is regularly monitored. 

4.  Nag the NHS SLT services for something more structured.  I got so fed up with our local services that I ended up complaining - it's a disgrace really - there's a manual out there telling everyone how to do it properly and no one is prepared to give schools the support they need with these more complex cases. 

5.  Try and involve the Ed Psych service - SM intervention is a behavioural intervention and, in my daughter's statement, CBT is recommended to reduce anxiety.  Typically, the LA did nothing about making provision and primary school were happy to sit on their hands.  Big school, yet again, were having none of it - they nagged the LA about it and the Ed Psych eventually offered a trainee Ed Psych as a weekly resource.  She's great and did a very good report for my daughter's recent annual review, with weekly therapy sessions recommended after school.  With her on board and a very keen associate SENCO fully committed, I suspect this will end up supplementing (or supplanting) whatever the SLT comes up with in the way of a SM package.

6.  The most frustrating thing is how long everything takes.  That's why I'd get your request in pronto, expect it to be turned down, expect to appeal and, in the meantime, you can be getting on with preparing evidence, nagging the school to do more (I gave secondary school a copy of the SM resource manual - they said they've turned to that much more often than anything the NHS SLT has given them).  You could ask the school to come up with a plan for a structured intervention programme pending your request for assessment.  If they say they don't have the resource, you could ask for the issue to be referred to the Governing Body because it's not on that some schools just don't do anything without being constantly nagged.  Obviously, you've got a relationship to maintain with them but it does get to the point where you've got nothing to lose really...  If nothing else, they should be supportive of your request for assessment, I would have thought.

I thank my lucky stars my daughter is at the school she is now but, as may be just a little bit too apparent from what I say above, it just serves to annoy me even more about the shoddy efforts I've had to put up with to date.  Trouble is, you get so used to no one doing anything, that becomes your new 'normal' and I've only recently stopped apologising to Big School every time I contact them - I'm never made to feel a nuisance - on the contrary, they've been at pains to tell me it's very helpful to have parental support/insight and nothing (yet...) has been too much trouble.  The whole feel is just much more professional and business-like.  It's just a pity that, with so little progress made in primary years, the problem is more difficult to tackle now.  But we are where we are with it - and at least my daughter's a generally chipper little thing in her own (very) quiet way.  Or very noisy way, if we're talking about home time...

Anyway - do let me know how you get on - I've made every mistake in the book and will be only too pleased to help anyone else avoid just one of them...!

Thanks jojo - its good to hear that things can work out.  We have the book you mention - I bought that when our daughter was 4 in Reception and the problems first became apparent.  Last year we bought the Selective Mutism resource manual which is a fantastic book and has been far more help than any professional.  We have been using this to do sliding in through year 3 and now in Year 4 but have made little to no progress.  There has been some advice/input from SALT, CAMHS, Play therapy and the sliding in we have been doing at school.  Ourselves we have tried homeopathy, hypnosis and neurodevelopment therapy.  Alongside lots of opportunities to try social activities and play dates etc.  Its therefore very worrying to be now nearly 9 years of age in Year 4 - with secondary school looming and still have no speech to adults within or out of school and only a select few children.  This is what is making me think we need to drive things forward and try for a statement so some more structured help would have to be put in place.  So far the services involved have not worked one to one with our daughter - purely advice to us as parents. 

I hope things continue to go well for you.  It does seem to be a lottery with regard to schools and services and how much support is given.

Hi,

I'm afraid I can't offer any advice on statementing for SM as we never got one. However, my eldest daughter who has ASD was diagnosed with SM when she was about 4. We had a few appointments with a speech therapist at the begining who diagnosed her and explained what we should do. I also bought an excellent book called How to help your child with selective mutism (available for about £13 from amazon). We followed this advice at home and when out and about. Like you, the school couldn't follow the program specifically but they were also patient and supportive. It took a while - well over a year or two for us, but it really worked. Except for situations when her anxieties and ASD get in the way, she now talks in most situations including her large school assemblies (in front of about 600 kids and adults). Although she has many other anxieties and phobias, SM doesn't seem to be an issue anymore for her. I know we were very fortunate that she was diagnosed early on and it is much more complicated when children are older, but if you haven't come across that book, then I'd really recommend reading it and following the advice given. There may even be more up to date ones now?

I know someone has posted about having no literature about SM in ASD children but in our situation it didn't seem to matter too much. I'm not saying it wouldn't have helped (I would love to see some research done about SM in children with ASD,) it's just that that program worked for my daughter who has ASD and SM.

I hope you get the help and support your child needs. 

Hi and thanks for replying to my post - its really helpful to know some of what a statement could include.  As it stands at the moment we don't have any specialist reports giving recommendations - they are very sketchy and just general advice about no pressure to speak, work in small groups etc.  The school have not followed much of the advice either apart from no pressure.  They don't have the "time or resources" to offer any individual support. 

I think perhaps we need to get our own private specialist report - as you mentioned, by a SALT.  The NHS SALT reports are wooly and don't even mention a diagnosis of SM although thisis  what is always discussed verbally and at TAF meetings I noticed this week looking over old paperwork its not been put down in writing which will disadvantage us I think. 

When you went to Great Ormond Street and they gave you recommendations for treatment - were you referred there as you are in that area or is it possible to be referred there if you are out of area.  I see on their website that they have a CAMHS team dealing with anxiety - is that the team you saw? 

Our local CAMHS team have been no help at all really, again rather woolly advice and not seeming to have any experience/knowledge of SM.  I noticed again that although we all discuss SM face to face it is not in any of their reports.  Then it is called anxiety.  I am beginning to wonder if there is an agenda behind not calling the speaking anxiety SM! 

Thanks again for your reply and sorry for bouncing back more questions.  I have sent an email to NAS asking if there is any way we can exchange personal messages or emails but like you I cannot see any way of doing it on this site. 

Best wishes

Hi there, Fortunately, I got an email prompt that there was a new post. We had a recommendation from Great Ormond Street Hospital for a structured programme of intervention to be put in place for selective mutism.  Our statement has very specific wording on this to ensure it was a programme backed up by 1.5 hours speech therapy input from a suitably qualified/experienced SLT. We also have 30 hours weekly 1-1 teaching support from a LSA specified. We had to make a second application to the tribunal to get more specific wording for the SM intervention because of extreme (and ongoing) difficulty in getting LA or NHS to make proper provision. I'd be happy to share wording, but not quite sure how to exchange email details so I can send something - a moderator might tell us? For the second tribunal application, I got a report done by a speech therapist with autism and SM experience. That was invaluable But obviously expensive. I'd also suggest you contact IPSEA, a fantastic charity that provides legal support to parents - their website is a mine of information (I volunteer for them, so I'm biased...!). If you find out now to do the private messaging thing, do let me know - i'm Luddite when it comes to that sort of thing...

Hi, I was reading your thread re your daughter having a statement for her SM.  It is a very old thread so I don't know if you will still pick this up but it would be so helpful if you were able to share with me some of the supports put into the statement.  We are going to try as parents to request a statement but I am not even really sure what would go into a statement for SM.  I don't know if you found a way of sharing this info as I am not familiar with this forum and there doesn't seem to be any means of personal messaging a person. 

Thanks

I had selective mutism as a child but it stemmed directly from literal thinking, on one of my first days at school the teacher said we were there to learn not to talk(because all the kids were chattering). I took her words literally and did not speak throughout primary school. I don't recall much from when I was in the infants part but my mother told me recently that the other kids would speak for me as I would whisper to one or two of them. By the time I was in juniors (so age 7 up) I still would not speak out loud but I would whisper (including hands up to the person's ear) and I clearly remember teachers telling me off, one in particualr was very nasty and kept telling me off for not speaking. My mum tried to get me to speak in school as out of school they couldn't get me to shut up, but as soon as I went through the gates I wouldn't speak out loud, I can remember as I got older (so around 8/9) I would psych myself up before school that all I had to do was speak it was simple, just open my mouth and talk, same as at home but as soon as I tried it in school I just couldn't this wave of what must have been anxiety/panic /whatever hit me and I could not speak.

It all changed when I went to secondary school, psychologically I must have allowed myself to speak again, I was still very quiet but I was able to speak out loud. Even now I tend to be so quiet people ask me to speak up and I sometimes (if I'm having a bad day) still have the odd time when I just cannot speak because I'm either overwhelmed emotionally or just panicking.

Have any of your children ever been able to give a reason as to why they can't speak? Can they expalin at all what happens when they try to speak in school/public? I wish you all luck with finding a solution.