Selective Mute

[ROBANDDEB]

Brilliant site !

 

Hi to everyone.

 

I have a Daughter of 14 who was finally diagnosed as having AS. On one hand it was relief to be able to finally shove it in the faces of the likes of SS , who for years had been trying to tell us it was a family problem ( bad parenting etc )and on the other it was a devastating blow . As time has gone on we have stumbled across more and more problems and everyday we do our best to learn to cope. The most recent one being that She has now decided to become a SELECTIVE MUTE ( where does it stop ) When i first heard of this i nearly burst out laughing thinking this was just quite simply the child choosing not to talk because of the situation at Her school. In my day wasnt it just being plain old SHY ? I thought it was them now making up silly names for something they didnt understand. How wrong i was . It turns out its very common , however .... ive looked about other sites etc and have not as yet found anyone with AS also being Selective Mute.

I am interested in hearing everyone elses opinion on this subject.

[Zemanski]

hi

 

try this - I just used the search button at the top right of the page

 

http://www.asd-forum.org.uk/forum/index.ph...f&highlite=mute

 

glad you like it here

 

Zemanski

[Brook]

Hi,

 

Sorry no advice, but I have read quite a few threads on here containing selective mutism, as Zemanski has put up for you.

 

Here is another: http://www.asd-forum.org.uk/forum/index.ph...elective+mutism

 

Just wanted to say welcome to the forum. <'>

 

Brook

Edited February 10, 2006 by Brook

[Kathryn]

Hi Robanddeb,

 

A very big welcome to the forum first of all. <'> You've come to the right place for support and info on just about everything.

 

We found ourselves in a situation similar to yours . After years of us looking for answers as to why she was different, my daughter was finally diagnosed with AS at the age of 15, along with clinical depression. She was in year 10 at school and losing the plot socially and academically after years of pretending to be like everyone else. She was having frequent violent rages, cutting herself, unable to sleep due to severe anxiety and withdrawing from all social contact.

 

This culminated in a complete breakdown at the beginning of year 11 (Sept 04)- she could no longer cope with people, being touched, or noise of any kind and after a few weeks we decided it was safer to keep her at home. From then on, she barely left the house for a year.

 

She had always been extremely articulate, but we began to notice changes in her language in the August 04 holidays, by which I mean she seemed to be struggling to find the words to express herself a lot of the time, particularly when upset. She spoke in two and three word sentences, as a two year old might, particularly when talking about feelings. The fluency returned only when she was talking about a favourite obssession, like Star Wars.

 

Round about December, she was barely speaking at all, unless she was playing a particular x box game and usually only to her little brother. Most of her talk consisted of film quotes, rattled off with great accuracy, the rest of the time she seemed to be physically struggling to say the most simple words. She would gesture and make noises to tell us what she wanted.

 

Then followed a period from early January 05 to the end of March when she stopped speaking altogether. We thought it was deliberate at first but she would get so frustrated at not being understood that we decided it couldn't be in her conscious control. It was extremely stressful for us - she took to writing down words but her coordination deteriorated and even this became difficult. So we carried the alphabet around with us and she spelt out words by pointing to each letter. This is how we communicated for weeks and because it was such an effort, communication was reduced to expressing basic wants . We were so confused and the professionals were even more so. This was a girl who I used to discuss philosophy with, now spelling out, "no want juice" with her finger. Very occasionally she came out with a film quote or two to her brother and I'd creep up th stairs to listen because the sound of her voice was such a novelty. It was a very depressing time to put it mildly.

 

Just before Easter 05 her speech came back, and she gradually gained fluency over the next few weeks. I still don't really know what triggered this - a change in her medication maybe - I'm still looking for answers.

Now she is back to speaking "normally" as she used to - almost - as there are occasional times when she is overwhelmed or talking about difficult subjects when we again notice a breakdown in her grammar and ability to find the right word - almost as though she is trying to express herself in a foreign language.

 

I too haven't found much about selective muteness as it relates to AS, but I'm still looking as I would really like some answers. Thanks to this site I found out that we weren't alone in having a teenager with AS undergoing depression and breakdown and it was through the wonderful people on this forum that I found the strength to cope with it all as we got no professional support for months - and a great deal of hindrance.

 

Robanddeb, I don't know if you can relate to any of this as I don't know the details of your situation. I've rambled on quite a bit, I feel! But I'm here if you want to talk more about it, either on this thread or via PM if you prefer.

 

Kathryn

[Zemanski]

Com, 13, last year was under incredible stress - the school removed support and we discovered that he also has severe prosopagnosia and literally can't see a face - he regressed in all sorts of ways and lost language to the point that even the ed psych stopped using AS to describe him and all his reports from that period state 'autism'

 

the good news is that once the stress was relieved (school put in place a pretty good package which we're still adjusting)he recovered his language very quickly. We're still having problems (he's off with anxiety after an exclusion incident) but things are getting better

 

stay strong

 

Zemanski

[Tez]

We were also in this position this time last year. A (13 at the time) was not coping at school and by the end of April, when we withdrew him, he'd stopped speaking and would only communicate using representational sounds, made up words (which we understood) and gestures (but even this was rare it was usual for him to be completely mute). This continued for some months but has now virtually disappeared.

 

A's consultant told us that this is not uncommon in children with asds when they are stressed (particularly during the years when they are coping with puberty as well) . A has since told us that the effort of talking was just too much for him at a time when he was struggling to even function.

Edited February 10, 2006 by Tez

[ROBANDDEB]

Hi again,

 

Thanks for all the help and replies its been very informative. Especially from Kathyrn.

 

Ive only just joined this site and was to be honest somewhat apprehensive, but last night i was reading through some stuff and have to admit it its pretty good here .

Ive had people say to me over the years why not go to the help groups, join a site etc. But to be honest i thought the last thing i wanted was to hear about a load of other peoples problems when ive got my own going on . Another reason i think is, ive heard so much from so many over the years and none of it was of any use at all .In fact most the time it made me wonder how on earth these so called specialists became specialists I wonder did they perhaps buy their diploma's off the web I honestly believe and we hadnt been pushed from pillar to post for so long we could have been a lot further forward than we are now. More prepared for her future etc

I will be more active on here just as soon as i find my way around . Theres just so much to read

 

 

 

[asereht]

Hi ROBANDDEB, my son 15 was dx at 13 and a half with AS and also selective mutism . I have studied some special needs as part of an advanced childcare studies course and it explains selective/elective mutism as the child not being able, rather than not wanting to, talk in certain situations or at times of stress. People often think my son just doesn't want to or won't talk. It is very mis-understood.

 

Theresa

Edited February 10, 2006 by asereht

[lil_me]

My son is a selective mute. Some days his mouth doesn't close, others he chooses not to talk, or just can't and starts stammering. I remember a conversation I had with Oreo who has ASD and she said she often chooses not to talk as she prefers not to.

Edited February 10, 2006 by lil_me

[ROBANDDEB]

Hi ROBANDDEB, my son 15 was dx at 13 and a half with AS and also selective mutism . I have studied some special needs as part of an advanced childcare studies course and it explains selective/elective mutism as the child not being able, rather than not wanting to, talk in certain situations or at times of stress. People often think my son just doesn't want to or won't talk. It is very mis-understood.

 

Theresa

 

Yes this is true of my daughter too.

I have got her so close to talking at school again but then she fails.

When she gets home her answer is " i wanted to and i was going to but i couldnt " She tells me she has geared herself up and was already to say something . But when it came to it she just couldnt.

She is so keen to start talking again but physically just cannot !

Physcological maybe ?

[asereht]

Physcological?

not sure, my son can't even go to school except on his own just with the teacher a few times a week, long story so I won't bore you ,you can check up past posts of mine if you like.

I know when he can't talk he often tries to ,for instance someone will ask him a question and he will try to answer but as he starts to talk gibberish just comes out and then his voice fades away until he can no longer be heard,usually he will look at me or his Dad then with a frightened/ plea for help expression on his face . It can be quite upsetting to see him like this at times,but we are getting used to it.

 

Theresa

Edited February 10, 2006 by asereht

[lil_me]

Sounds very familiar Theresa, my sons starts as a stammer, then into babble and gets quieter and starts screwing his face up, then he's usually vanished to hide after that. Relief reading this as I thought he was the only one.

Edited February 10, 2006 by lil_me

[asereht]

Sounds very familiar Theresa, my sons starts as a stammer, then into babble and gets quieter and starts screwing his face up, then he's usually vanished to hide after that. Relief reading this as I thought he was the only one.

 

 

 

Yes it is a relief to read that my son too is not alone in this. My son too will vanish or hide his head under something. The hard part is when he is in someones office like say the school counseller or the unit he attends and he has nowhere to hide ,in this situation he hangs his head or hides behind his long hair.

[ROBANDDEB]

he will look at me or his Dad then with a frightened/ plea for help expression on his face . It can be quite upsetting to see him like this at times,but we are getting used to it.

 

Theresa

 

 

Yes she also does this. Only in the last sort of 2 to 3 months when we have increased visits at home form specialists etc.

 

They come in and talk to us and she sneaks in to listen in (like they do) Then generally what happens is the person in question tries to talk to her ... Suddenly the blood drains from her face and she stares at either myself or Debbie and looks like something really really bad has just happened. She stays like that for as long as neccassary without talking .I have to agree the first time i ever saw this really upset me and it really brings it home to you. But like you say you slowly get used to it.

Its so strange too because as soon as theyve left she wont stop talking !! Maybe i should ask one of them to stop over for a few days (kidding)

Edited February 10, 2006 by ROBANDDEB

[Kathryn]

Robanddeb,

 

I tried all sorts of things to get my daughter to talk - even putting a bar of chocolate in front of her and saying she could have the whole thing if she just said the word. She physically could not - unless she was a greater actress than Judi Dench she was not putting it on. On the rare occasiuons she spoke, it was when there wasn't any pressure - eg to her 8 year old brother about topics she enjoyed - and to animals: she would try hard to speak to the cat.

 

Least helpful was the OT who took L. for a walk with her dog and accused her of deliberatlely refusing to speak as she had heard L talk to the dog. L refused to see her again.

 

Theresa, if you came across any research in your studies I'd be interested to hear of it.

 

There was a really interesting thread on this a long while ago with insights from people on the autistic spectrum saying that they were more comfortable with non verbal communication. I'll try and dig it up if it's still on here.

 

K

[asereht]

. Suddenly the blood drains from her face and she stares at either myself or Debbie and looks like something really really bad has just happened. She stays like that for as long as neccassary without talking .I have to agree the first time i ever saw this really upset me and it really brings it home to you. But like you say you slowly get used to it.

Its so strange too because as soon as theyve left she wont stop talking

 

The first time I experienced this with my son was exactly the way you decribe it. It was at an assessment for DCA or DLA as you may call it ( I am in Ireland) . I got very upset about it and sobbed on my husband shoulder that night ,his dx really hit home that day.

 

Thing is he talked non-stop in the car all the way home

 

 

Kathyrn- The course covered it very briefly ,doesn't seem to be much out there about it. With regard to your daughters OT , one of the people at my son's unit now says to him " oh your claming up on me now" as if he was doing it deliberately!!

Edited February 10, 2006 by asereht

[lil_me]

What I find most difficult is explaining to other children. After my sons test the other day he went silent. Outside of the school waiting to collect my other son a little boy came and said 'Mikey won't talk to me does he hate me'

 

I just said he's not happy as he had been to the hospital that morning. It is hard and must confuse these children who are extremely supportive of him when he ignores them.