Selective Mutism - any advice?

Sorry to jump in on this thread! I am so grateful to have found this thread as you are describing our dd2 who's 5! she's been diagnosed with autism and selective mutism, we are just relieved cause the drs have jumped around so many diagnosis, and now we've gone private, we have ffinally got of this roundabout. Our dd is home educated as school is not an option for her, and her siblings are home educated as well, and its really helped her :) 

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).  

Hi,

In a funny way I am delighted to find that I am not alone!!!!!!

I have a 10 year old daughter who was diagnosed with Autism last year.  She also has learning difficulties but has been selective mute for most of her school years.  She refuses to speak or do her work in class.   She only speaks to close family when in the house.  Outside she rarely speaks.  If anyone asks her a direct question she completely shuts down.  She will however speak to you on the telephone or through a door (anywhere where there is no eye contact).

All professionals involved with my daughter now agree that they do not know what to do next.  

She started back at school today and has a new teacher.  I have been asked to go into the school as this teacher would like to agree on a strategy that we can both stick to.

Any help would be greatly appreciated!

PS - I am currently contacting SMIRA to see if they can help.  Will keep you posted!"

I have an ambition to be selectively mute . .  and I feel I am getting there.

In an ideal world I would be mildly catatonic and  completely mute , if I thought the world would let me.

I am too weary at this stage of trying to be 'normal'. I am not and never will be. I have spent my life on a stage. acting badly and being despised in the main for that.

I wasnt cut out for the stage . . some of us arent. Some people, most maybe are not sensitive or good enough to deserve to be spoken too and anyway speech is overrated. As a society we have become obsessed with speaking and listening to all kinds of vocal rubbish. look at the tv, radio and mobile phone situation. There is more to life . . and used to be in the past. 

I would like to give you all some hope, a ray of sunshine.  My now 29 year old daughter who was diagnsoed with Aspergers at 21 years old, would not speak to anyone outside of the house or family when a child.  After prolonged bullying at school we home educated her.  The difference when we took her out of school was amazing.  She looked like we had lifted the whole world off her shoulders.  What helped most though was having a very chatty, confident mum.  I tried not to let her hide from situations, but confidently held her hand and included her in converstations.  It takes time, but at 23 she tried a mainstream college.  After 6 months though she found the classroom situation too much. Her social worker noticed how much her confidence had grown.  I always encourage her to try things. We had a terrible week when it was her turn to light the fire at girl guides!  She has since backpacked around New Zealand with a friend (She couldn't cope alone) and in September we are off to Perth, Australia for the APAC conference to hear Tony Attwood speak.   Please have faith, things will get better and I am happy to answer any questions should anyone wish to speak to me.  We're all here to support each other!  

Dear Rachaub and Chocolate Buttons,

Thanks so much for taking the time to reply.  So sorry to hear of the difficulties you've faced Buttons - it's precisely for those reasons that I want to help my daughter - I do hope you're doing what you can to access any support now available, even though it's clear you could have done with much more decades ago.  I'm prodding the school to get on with applying for a statement although I think the best help will be seeking advice from the speech therapist - they've already had an informal view from her that they shouldn't be forcing the issue - that just makes it worse.  Seems to be the prevalent advice?  I still don't know if she has an ASD - her paediatrician was doubtful, but is referring her (to the Wolfson Centre?) for further consideration/assessment.  My best guess is that she either does meet the criteria for ASD or she's at the ASD end of the 'normal' spectrum - I'm working on the basis there's a grey area between what would be considered neuro-typical and what wouldn't - suspect my daughter is in that grey area somewhere, if she doesn't quite meet the full ASD criteria.  We'll wait and see.  But she's happy at the moment and (thank goodness) - I just want her to stay that way...

Buttons/Rachaub - if you have any other advice about how to handle the mutism, I'll be only too glad to receive it.  There was a slightly dispiriting message from the Paediatrican that, whatever the outcome, interventions of any description didn't help much - that seems to contradict a lot of what I've read.  Even if all you get is a level of understanding from others and self-awareness, I'd have thought it would make the assessment/diagnosis process worthwhile, even if there's no magic cure...?

Hi all,

Very sorry to hear about the problems you've been having. Here's a link to our main advice service page:
http://www.autism.org.uk/our-services/advice-and-information-services.aspx

From there you'll be able to access appropriate helplines, whether that's talking things thorough with another parent, finding out about education rights, or getting information and advice from the Autism Helpline.

You could also try the Autism Services Directory:
www.autism.org.uk/directory

From here you can search for services in your local area.
I hope you'll be able to find the help that you need, and please let us know how you get on as I am sure this is an issue which affects many others. In the meantime if anyone else has any experience to offer that would be much appreciated. Good luck.

Sandra

hi get help for your daughter who has selective mutism as soon as possible. Speak to the school and push them to help. I am 43 year old woman who has suffered from selective mutism,social anxiety social phobia and have aspergers which hasnt been properly diagnosed yet. i suffered greatly at school,nursery,work and social situations. I so wanted to speak and make friends but wasnt able to. I had no help or support or understanding whatsoever. i was left isolated and unable to function which led me to have severe anxiety and depression and thus i tried to end my life twice. I live with my elderly dad and unable to cope or manage independant living and you dont want this to happen to your daughter if she is unable to talk to people. Its good tho she can talk to close family members. Now i just talk to my dad as i dont have any family. I progressed a bit as i do 3 afternoons at a charity shop and have 1 close friend now. Sorry for rambling. Hope this helps a bit!

I wish I could help but I'm in the same boat. My 12 yr old son has exactly the same problem and sounds exactly the same as your daughter, he was referred to CAMHS for his anxiety disorder but as his anxiety reduced when we took him out of school they discharged him without any useful advice as to how to help him with his selective mutism.

It has got a bit better of late which I put down to his general level of anxiety reducing. School was an unmitigated disaster for him so when we took him out he gradually improved.

I think I am going to concentrate on building his confidence generally and hope that with increased confidence his mutism will improve but that is the only thing I can think of to help him.