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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

  • Dear Alison,

    Well my daughter's now 10, still selectively mute, but has now been diagnosed with ASD following referral to Great Ormond Street Hospital.  They advised that she needs the same programme for selective mutism intervention as that developed generally.  I think the best thing you can do is get a statement of special educational needs if you haven't got one already.  Your daughter has a diagnosis of ASD and is selectively mute.  You also mention learning difficulties.  My daughter got a statement on the strength of having ASD and selective mutism alone.  The school kept saying we may not get one because her educational attainment isn't sufficiently bad to warrant one in itself, but you can get one for ASD/selective mutism even if learning difficulties aren't that severe.

    If I were you I'd apply for an assessment right now and, if turned down, immediately appeal - if your child has significant difficulties and a formal diagnosis, chances are they'll back down and do an assessment - a statement almost always follows. 

    The selective mutism programme GOSH recommended was the Wittgens/Johnson one that seems to be universally approved.  You can buy their Selective Mutism Manual off Amazon for around £25-30 and, if you  haven't got it already, I'd strongly recommend you get it and take it into school.

    If your daughter's anything like mine, she may down tools in class because she simply doesn't understand the instructions - if they're not clear, unambiguous and short, my daughter just loses the plot and sits and does nothing.  Unfortunately, this can then become a habit if the school don't proactively step in.

    In Essex, there is a specialist autism teacher who can come out to schools and advise them on strategies - this has been great, along with speech and language therapy support for selective mutism.  Having said all that, I only just got my daughter's statement last term and, as far as I know, the school haven't lifted a finger to arrange for the provision to be in place this September - I have a meeting this afternoon to push them - no one does anything without constant prodding, in my experience. 

    A statement is the best way to ensure your daughter gets the support she needs.  I know there are rules about not giving out personal details etc on these forums and I never quite know how to use private messaging instead but, if you're interested, I'd be more than happy to share my daughter's statement so that you can see what kind of special needs have been identified and the provision recommended to address them.  If that is of interest to you, I'll see how contact details can be shared without upsetting the moderators...  You may of course already have a statement, but I guess not if the school are really floundering?

    My daughter does now speak to her teaching assistant, so improving the school's understanding of how to deal with mutism does make a difference.  I read somewhere that mutism in girls with ASD is a very common phenomenon - but, like you, we're the only ones we know!

    Good luck and do post if you'd like to see any of our paperwork - and I'll try and find out how to pass on contact details other than through the open forum (I don't think that's allowed).  

Reply

  • Dear Alison,

    Well my daughter's now 10, still selectively mute, but has now been diagnosed with ASD following referral to Great Ormond Street Hospital.  They advised that she needs the same programme for selective mutism intervention as that developed generally.  I think the best thing you can do is get a statement of special educational needs if you haven't got one already.  Your daughter has a diagnosis of ASD and is selectively mute.  You also mention learning difficulties.  My daughter got a statement on the strength of having ASD and selective mutism alone.  The school kept saying we may not get one because her educational attainment isn't sufficiently bad to warrant one in itself, but you can get one for ASD/selective mutism even if learning difficulties aren't that severe.

    If I were you I'd apply for an assessment right now and, if turned down, immediately appeal - if your child has significant difficulties and a formal diagnosis, chances are they'll back down and do an assessment - a statement almost always follows. 

    The selective mutism programme GOSH recommended was the Wittgens/Johnson one that seems to be universally approved.  You can buy their Selective Mutism Manual off Amazon for around £25-30 and, if you  haven't got it already, I'd strongly recommend you get it and take it into school.

    If your daughter's anything like mine, she may down tools in class because she simply doesn't understand the instructions - if they're not clear, unambiguous and short, my daughter just loses the plot and sits and does nothing.  Unfortunately, this can then become a habit if the school don't proactively step in.

    In Essex, there is a specialist autism teacher who can come out to schools and advise them on strategies - this has been great, along with speech and language therapy support for selective mutism.  Having said all that, I only just got my daughter's statement last term and, as far as I know, the school haven't lifted a finger to arrange for the provision to be in place this September - I have a meeting this afternoon to push them - no one does anything without constant prodding, in my experience. 

    A statement is the best way to ensure your daughter gets the support she needs.  I know there are rules about not giving out personal details etc on these forums and I never quite know how to use private messaging instead but, if you're interested, I'd be more than happy to share my daughter's statement so that you can see what kind of special needs have been identified and the provision recommended to address them.  If that is of interest to you, I'll see how contact details can be shared without upsetting the moderators...  You may of course already have a statement, but I guess not if the school are really floundering?

    My daughter does now speak to her teaching assistant, so improving the school's understanding of how to deal with mutism does make a difference.  I read somewhere that mutism in girls with ASD is a very common phenomenon - but, like you, we're the only ones we know!

    Good luck and do post if you'd like to see any of our paperwork - and I'll try and find out how to pass on contact details other than through the open forum (I don't think that's allowed).  

Children
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