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Selective Mutism - any advice?

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Hello everyone,

My eight year old daughter is soon to be assessed for ASD and I expect there will be a diagnosis of ASD/Aspergers.

One of the most significant problems she faces is selective mutism.  She is terrified of talking to people she doesn't know well (i.e. everyone except parents, brother and one friend she made at her old school).  Even Grandma/Grandad have trouble getting her to speak, although she speaks freely with her immediate family.  Everything I've read suggests it's an anxiety response and she is extremely self-conscious in general.  With us though, she's a different girl - happy, funny and giggly a lot of the time.  She'll occasionally be like this with others, but it's fleeting and never seems to last.

Anyone got any ideas for how to help?  I've read a lot about selective mutism unrelated to autism, but the strategies there suggest something more of a pure phobia about speaking.  With my daughter, I think it's different - it's anxiety about social communication (not surprisingly)...  I'm worried it could get worse, but don't know how to stem the tide of any regression (mercifully, she just recently started talking to her childminder again who she goes to once a week, but I've been worried there's been a general regressive trend lately, aside from this).

Any ideas would be very welcome.  Autism-related literature on the subject is thin on the ground - or I'm looking in the wrong places....

Parents

  • 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

Reply

  • 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

Children
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