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Any think there would be a benefit to a selective mutism dx as well as an Asd one?

(19 Posts)
Ineedmorepatience Mon 16-May-16 16:34:29

Hi folks, loads of you know my story but for those who dont Dd3 is 13 and has dx's of Asd, Spd, Specific communication diffs, Literacy Diffs/dyslexia, hyoermobility syndrome.

Communication is a massive issue for her and was one of the main reasons for the breakdown of her school place (she is home ed).

She has been able to write that she feels like there is a wall in her throat that stops the words coming out, this is a massive leap forward for her because she has never really been able to express why she cant speak in certain circumstances.

She is completely unable to access help if it relies on her asking but of course because staff see her being verbal they completely miss the point that she cant do it in situations where she is anxious or stressed!

I am seeing her Salt tomorrow and am going to she her what Dd3 has written about not being able to speak but I am also wondering whether to speak to her about a possible SM dx before we attempt another setting in the future!

Anyone got any views?

Ineedmorepatience Mon 16-May-16 16:35:35

hypermobility and show blush

Ineedmorepatience Mon 16-May-16 16:48:17

Oh gee just noticed the title! Anyone blushblush

PolterGoose Mon 16-May-16 17:33:24

Message withdrawn at poster's request.

Ineedmorepatience Mon 16-May-16 17:41:26

Thats what I am thinking polter, it is noted in several reports and her statement that she finds it difficult to speak when she is anxious and that she struggles with asking for help and needs an advocate but I dont think that goes far enough! Now that she has written it down how it feels to be her trying to speak in a difficult situation I think it needs to be made more formal!

Last time I met with the SALT she was surprised at the level of difficulty I was describing so it is timely that Dd3 suddenly decided to update her book and write a paragraph on trying to speak.

PolterGoose Mon 16-May-16 18:37:26

Message withdrawn at poster's request.

AntiquityOverShares Mon 16-May-16 18:48:57

I would agree with a separate diagnosis as it's right there and easily seen by whoever needs to know the issues rather than bunched under autism things.

zzzzz Mon 16-May-16 19:29:09

Personally I would be wary of a SM diagnosis. It carries A LOT of baggage and support (such as it is) is clunky and very dependent on the emotional maturity of the provider. I personally wouldn't but would describe exactly the same thing as the more empathy inducing anxiety or extreme social anxiety.

pannetone Mon 16-May-16 19:31:22

I agree it would be worth getting selective mutism confirmed as a formal diagnosis. My DD was diagnosed with SM at 4, and got an ASD diagnosis 4 years later.

I think you should get the SM documented - it is frequently not properly understood yet it is so important for all family, friends and professionals involved with DD to follow the correct approach - primarily not putting any pressure on her to speak.

I agree with Polter that it's great that your DD has at least been able to articulate to you how it feels trying to speak when she is anxious. I hope that she not only gets a diagnosis if that's appropriate and help - SM can be very debilitating.

Ineedmorepatience Mon 16-May-16 21:43:46

Thankyou all smile I am really pleased that she has been able to describe the feeling of not being able to speak.

I will talk to the SALT tomorrow.

zzzzz I can see what you are saying about support not being great but as it is she was getting no support at all. She is doing well in one small HE group that we go to in terms of communicating with a few very familiar people but she is still struggling massively in any other group and in situations where she needs help even at home. So I am wondering if even support which isnt perfect might be better than the nothing she had before!

Thanks again everyone smile

zzzzz Mon 16-May-16 22:59:57

the difficulty I think is that people tend to google when they want to find out about a condition and they will get "over bearing mother", "defiance", "abuse/trauma" and you will have to deal with that. The step away from those ideas is far more recent than the debunking of the refrigerator Mother crap.

On a more +ve note dd has it on the run and I certainly was a similar little girl but luckily for me was brought up in a large family where it was for the most part hidden, and manage well.

Ineedmorepatience Mon 16-May-16 23:04:47

Thats good news about your Dd and thanks for the heads up I will tread very carefully smile

ouryve Mon 16-May-16 23:11:06

It would be worth having it specifically spelled out. DS1's has had a bit of a resurgence and, I think that people aren't noticing how panicked he is when it happens because his facial expression lacs subtlety. He just comes across as intentionally blanking you but his body language changes and his breathing changes.

When it's happened to me (rare now, but very common as a child) it's felt like the words were all wedged in a doorway, that there were too many of them and the right ones couldn't escape. By the time I'd sorted the mess of words out, the moment had passed and all I wanted to do was put the feeling behind me and move on.

Ineedmorepatience Tue 17-May-16 10:35:26

Thanks ouryve Dd3 has written that it feels "like there is a brick wall in between me thinking what I wanted to say in my head and those words actually coming out of my mouth" . She has also written " someone would put a barrier up in my vocal chords".

I am going to take a copy of what she has written with me today.

GlassCircles Tue 17-May-16 11:15:50

Have you seen the SMIRA document on diagnosis? This is an extract from it:

"SMIRA’s position on diagnosis of SM:

a. Diagnosing practitioners should make an assessment for SM where they believe the patient meets the criteria for such a diagnosis.

- The preferred diagnostic criteria at this date are those published in APA DSM5, which lists SM as an anxiety disorder.

b.Diagnosing practitioners should make a separate diagnosis for SM even if there is a preexisting diagnosis for another disorder. SMIRA believes that 'excluding' SM as a comorbid diagnosis has been very unhelpful to medical practitioners and their patients. This is especially true in the case of ASD. Of course a person with ASD can also be selectively/situationally mute (SM).

This position was made clear in the Tackling Selective Mutism book, which was then endorsed by Professor Sir Michael Rutter (Institute of Psychiatry, King's College London).

Alice Sluckin and Benita-Rae Smith
(seeTacklingSelective Mutism, Smith and Sluckin 2015).

Ineedmorepatience Tue 17-May-16 12:15:17

Thankyou glass that is really helpful.

Ineedmorepatience Tue 17-May-16 14:29:31

Appointment went well, salt said SM is not in her remit and wants Dd3 referred to a clinical psych!

This has been recommended by salt before but the referral was refused!

I will push harder this time!

Anyway new targets set, let the challenge begin.

GlassCircles Tue 17-May-16 15:51:04

I think that's often the problem with SM, it gets batted between SLT and CAMHS which is v annoying if SLT doesn't 'do' SM in your area, and CAMHS don't have specialist SM training either.

There may well be some private SLTs in your area who deal with SM if that's an option, even if just for a diagnosis on paper. Good luck with the clinical psych referral.

Ineedmorepatience Tue 17-May-16 16:44:07

Thanks glass yes going private is an option for SLT.

Last time it came up the paediatrician said Dd3 wouldnt meet the criteria for a camhs referral but everything has changed in the last few months so I can try again.

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