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Selective mutism and diagnosis

(15 Posts)
AliMonkey Fri 20-Jun-14 16:38:48

Wondering if others have sought an actual diagnosis of selective mutism via a doctor? My DS aged 7 clearly has it. We know it, the school knows it and school is following program in the SM manual. In reception, school referred him to speech therapist and CAMHS but SLT said not their field and CAMHS basically said "ideally we would see him but we're overloaded and have too many kids with worse issues so can't."

I felt no point in going to GP as they would only try to refer to SLT or CAMHS, so we and school dealing with it.

Have been taking DS to dentist since was 3 but he has never opened his mouth to let dentist look. (I assume as it's mouth related it's same as SM - he just can't).Dentist has finally decided to refer to special care dentist but when he was filling in the form and I explained the SM, dentist told me off for not going to see doctor about it.

So now can't work out if dentist being unreasonable or I'm being bad mother.

If anyone has been to doctor, what did dr do?

zzzzz Fri 20-Jun-14 16:51:31

Dentists are pros at making the mother feel like poo. The sn dentist will be infinitely nicer.

My dd was sm but has now come off medication that was causing anxiety and is talking much more freely. Ours was known but not dxed despite being quite severe.

If it was me I would go to the GP because frankly SALT or CAMHS should be running the program at school.

tempe48 Fri 20-Jun-14 17:08:46

www.nhs.uk/conditions/selective-mutism/pages/introduction.aspx

There are clear references to speech therapists in here - they refer to ASLTIP for a start.

My nextdoor neighbour is a speech therapist and she regularly talks to me about children she treats with selective mutism!

Also, look up on the internet for articles featuring Maggie Johnson, a speech therapist who specialises in selective mutism.

Have you spoken to SMIRA?

AliMonkey Fri 20-Jun-14 20:58:02

Thanks for your quick responses.

Glad (sort of!) that not the only one made to feel like that by dentist!

I probably should have said (and meant to) that school is being advised by the educational psychologist (council employed rather than NHS) so not completely on own. She was until now just advising from afar but recently came in and actually assessed him and I met with SENCO and her after. Was disappointed (but not surprised) that no magic wand but relieved that we appear to be doing all the right things.

Sounds as though going to GP is worth a try. Our doctor changed about 6 years ago and think have only had to see him once (for me or kids) so guess it just it isn't something I do!

Read lots of Maggie Johnson stuff (the school program is one of hers) and had lots of frustration trying to join SMIRA website and email them but never got any response so gave up. Maybe I should try again.

pannetone Sat 21-Jun-14 08:41:41

Ali the smira facebook group is very active ' I agree the website is pants! I am not a Facebook user at all generally but I signed up just so I could join the smira group. ( you hsve to "request' to join but that is a formality - there's no entrance test or checking you out !)

adrianna22 Sat 21-Jun-14 23:04:30

I think it may be hard, as I have heard that selective mutism is quite rare.

A speech therapist, that I know of, who has been working for 25 years in her field, said she only came a crossed one child who had a diagnosis of selective mutism.

You can be refereed to a speech therapist and if she thinks that's the problem, she would most likely refer him to see a specialist in that field.

Darcy1234 Sun 22-Jun-14 01:28:15

The SMIRA website is being updated meanwhile the fb group is active and friendly.

missbluebird Sun 22-Jun-14 06:13:02

Where I am children with SM are seen jointly by SLT and EP. It is definitely SLT's area.

zzzzz Sun 22-Jun-14 07:26:27

The specialist in that field IS the SALT and/or psych. It's not that rare, but under diagnosed I think. I think it would respond well to CBT and would be pushing/paying for that. It's one of the few things I would recommend going private on if you aren't getting help because it CAN be addressed and is very difficult.
Mine is recovering and it is as wondrous as you would imagine. Fight hard for that.

clairewitchproject Sun 22-Jun-14 21:54:48

Mine has SM and aspergers. His SM was only recognised thanks to a very very good clinical psych and SALT as actually, he does speak in school - but only to answer. He never initiates any action or any question to school staff, and will only answer to work based questions where he is sure of the answer. Yes the SMIRA fb group is active and friendly (I wonder who you all are, LOL). Since I understood my son's sudden loss of speech in certain situations as selective mutism I see it as more of a spectrum and only the severest end is recognised as yet.
I am sick of being considered 'worried well' because my DS is academically able. I had a big meeting in school last week where they presented his results and said 'see, he's doing well' and I had to remind them YET AGAIN that academics are not the problem and he really, really needs some therapeutic support (he has had a programme since Feb that they haven't started because they can't find a time slot to do it, and the ed psych sat and said 'its a programme that would be best suited to a child in primary school' and I'm like well my DS is in year 7, so he ain't in primary, and not helping him IS NOT AN OPTION. Ther eis no point in him having 11 GCSEs if he cannot get a job because he cannot speak at interview. GRRR.
Sorry, made that all about me, LOL....but what I wanted to say is that yes it is SALT's responsibility, or psychologist, and the SALT would be the obvious person to confirm the diagnosis. As he gets older you can get DLA for SM- my DS gets £40 a week which we spend on a lady who is beginning a desensitisation programme at home - the other day he went into a shop and bought a drink after much preparation, very delighted with that!

AliMonkey Sun 22-Jun-14 23:54:50

claire ... I'm totally with you on the "See, he's doing well". I'm grateful that DS is bright (school agrees - but still makes him read every book in the book band books before he can go onto the next one, as they can't assess him!) But my concerns about "life" don't seem to be taken seriously - yes, he might be able to do well in future exams, but if he can't order a restaurant meal, handle social situations or go for a job interview then all that will count for little. DS is only 7 and I probably am projecting things forward too much, but I would like it if they understood that it wasn't all about school. Guess that's what comes of the only professional input being from teachers and educational psychologist.

You are all pointing me towards trying again to get him some other help so guess it's off the to the GP for me. (Stupid question - presumably I can make an appointment with GP to talk about DS without bringing DS?)

proudmama2772 Tue 24-Jun-14 13:28:07

Hi AliMonkey.

My daughter had this. It started when she was 2. Basically the chronology goes like this.

2 - very little speech - nursery was concerned about her development
3 - new nursery - didn't speak for 3 months. Her teacher eventually told her if she didn't answer and assessment question she would have to go speak to the nursery a head - basically a punishment. She then started speaking and spoke the rest of the year.
4- nursery - no speaking all year.
5- school start - no speaking for 6 weeks. Then her teacher, a wonderful teacher, came to our house spent an hour. She had some sound cards. She started with having her point to a card. Then tricked her by holding up the letter 'A'. My daughter opened her mouth and we waited patiently for about minute. She was trying to talk but couldn't. The we moved on and were talking to her and we heard 'aaah' faintly. And within three weeks she was reading in front of the class.

They want to talk but they can't. It's a bit like a safety crutch, like a blanket.

If you can get her teacher to come to your house, this is the approach that works.

SingySongy Tue 24-Jun-14 19:30:01

I'm an SLT.
It's not that rare - and has actually been shown to be on the increase in recent years, and not just because now diagnosed more.

It's generally diagnoses and treated these days by SLTs, but historically this hasn't always been the case - so there is still variability around the country I think, and it does still sometimes fall to the ed psych. Probably depends on the training and experience of different professionals... Most SLTs who are happy to take on cases will have been trained by Maggie Johnson and colleagues. The consensus is that it should be treated as a social anxiety disorder, and the Maggie Johnson resource is really really excellent.

Incidentally, when I did my MJ training, there were a few parents on the course, as well as professionals, which might be a possibility for you? There was one mother present, who had also paid for a place for a school TA who was then going to work with her child. As treatment is very often a home/school partnership I thought this was a really excellent idea. And much cheaper than paying for lots of private therapy too... (which is sometimes the only other option).

AliMonkey Tue 24-Jun-14 22:45:06

Proudmama - interesting thoughts about getting teacher to house. But can't quite get my head round why that would work when DS can't talk to others (eg godparents who are good friends of mine who he sees regularly) at our house any more than if we are elsewhere. But doesn't mean it isn't worth a try. Must admit that have pretty much given up on idea of him talking to this year's teacher given nearly end of year. But could talk to next year's teacher about possibly doing it. At least in every school year he has talked to a TA - although only out of classroom and this year wouldn't talk to his class's TA but will talk to the other class's TA so following the Maggie Johnson programme with her.

And thanks Singy; definitely worth hearing from an SLT. Looks like I'm just in an area where this isn't seen as SLT responsibility. And am OK with that as long as he is getting help he needs. Which I think he partly is. I will look into MJ courses.

Arkadia Tue 10-Oct-17 12:40:06

How has the story developed in the last three years?

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