Good news and baffling news

[Kathryn]

Hi all,

 

Just wanted to post an update on L's situation: I know lots of people have been following her progress. She's just turned 17, has been at our local FE college since November, is still enjoying it and doing things we thought she could never do again, like going bowling and into London by train.

 

By the end of this term she will have done her level 2 literacy and numeracy exams which will give her the equivalent of 2 GCSE A* - C grades. She?s also going to join a mainstream class in web design, if she feels comfortable, and she's is a keen member of a disability advocacy group. Recently she decided to up her attendance from 3 days a week to 4 if it's not too physically tiring. In June she's going away with a group to Butlin's for a few days and is really looking forward to this, and to sharing a room with one of the friends she has made. So she's done amazingly well so far.

 

I deliberately mentioned the good bits first as I need to try and stay positive. Just over two weeks ago, she stopped talking again (she went mute at the beginning of last year for about 3 months). This time it came out of the blue: one day she was reading Harry Potter aloud to her brother with great expression and fluency, a few days later we were back to sign language and sounds, and she hasn?t been able to speak since. The strange thing is, she doesn't appear stressed or withdrawn like last year, she has been quite calm and controlled and happy. The day she went back to college after the holidays, she went and found the tutor to explain she couldn't speak. The college have been brilliant and have given her an alphasmart so she can "talk" : she expresses herself very coherently in print and and that's how she communicates now - she's also been learning BSL and uses a bit of that, although not at home.

 

The last couple of weeks have been really tough - it brought back all the trauma of last year and it's been an emotional rollercoaster. At first I was very upset and felt "please God no - not again". I'm finding it difficult to accept that this could be long term - possibly permanent - I don't know. She certainly feels more comfortable communicating this way: she's always said that speech was difficult for her, although she has been so articulate that you wouldn't have guessed. I'm trying to just go with the flow rather than hope and pray every day that her voice will come back again. I don?t want L to pick up my negative feelings. I really miss her voice though. It would be easier for us if she had never talked.

 

I don't know why this has happened now - there's been no obvious trigger, and we can only speculate. Perhaps she finally feels accepted as she is and therefore free to be herself, ie a "non speaking" autistic person. Or perhaps it's some complex form of avoiding the challenges which are looming: classmates moving on and having to think about her own future. Or perhaps she wants to identify more closely with others on her course who have more "obvious" disabilities. Or perhaps there is no explanation and it's just autism. One of her favourite books is "Through the eyes of Aliens" by Jasmine Lee O Neil who is autistic and mute. I had a wild idea that L was trying to copy her, but it would be an impossible act to keep up for so long. I believe her when she says it's involuntary .

 

I can't find much reference to this kind of mutism in anything I've read on ASD. I'll be glad to have your thoughts on this especially if you're in a similar situation as a parent, or if you're autistic yourself and don't speak.

 

K

Edited April 29, 2006 by Kathryn

[Brook]

Kathryn,

 

firstly, a big well done to L for such great progress.

 

Unfortunately I do not have any answers as to 'why' L has stopped talking,

you have already explored alot of possibilities, I dont even know if this is

common? I sure hope someone can come along with experience of this

and give you their insight.

 

Maybe, like you say L has alot of challenges looming, and this may well be

her coping method? Maybe she puts sooo much effort into verbally

communicating that she has to give herself a break to recharge herself?

 

I'm really sorry I have no answers.

 

But I wish you all the best.

 

Brook

[Kathryn]

Thanks, Brook <'>

 

K x

[pingu]

Hi kathryn

 

& <'> To L. Great progress.

 

I wish i had an answer to the mutism side of things, but i dont. We have had experience of this, but we are told its down to anxiety. Im not convinced, but what else can it be ( i ask myself). Although our daughter is no longer silent, i remember the time when she was, i would have done anything to get her to speak again, but i would have given even more to find out why she stopped in the first place.

 

I hope everything goes ok. My love to you and your daughter. Good luck L'

<'>

shaz

[oracle]

I don't know how I would cope with this <'> But do hold onto the positives here because if this is a life choice and nothing to do with stress and anxiety, as it was last year, then is that not a better reason for L not talking? Maybe it's my strange sense of logic but this may just be a case of 'I am what I am!' and if it is then what is needed is acceptance. However it could be that L can cope with everything that she has taken on board and also wants to progress to do even more things, but she can't cope with all of this and talking. Does that make any sense. David often tells me he has a self preservation mode and opts into it when necessary - maybe it's necessary for L right now?

 

Whatever it is <'> <'>

 

Oracle

Edited April 29, 2006 by oracle

[Sallya]

This must be really upsetting for you, but L sounds like an amazing young lady who has overcome huge barriers that you never thought possible...you must be very proud of her .......only time will tell what's around the corner for you next... <'> <'>

s

xxx

[Flora]

Kathryn

 

It sounds like she is doing great, and because things are going so well and she is making some brave decisions (increasing her days at college), AND she has exams coming up, maybe that is the cause of her not talking. I know when my boys are doing something new or if something unusual is going on, even though they may be happy with it, I also see an increase in their autism (for want of a better way of putting it). Christmas is a good example of this, they love it, but William in particular finds it difficult to cope with.

 

Just a thought.

 

It's good to hear that she is doing well.

 

Lauren

[Suze]

I,m so so pleased that L is doing so well.I can remembr some of the bad times and things have moved on some much since then .I think Lauren and Carole may have picked up on what could be happening here , my son as much as he may enjoy and look forward to something also struggles at the same time with the anticipation and subsequent stress that it brings on. He in turn begins to show autistic type behaviour.Last weekend was a good example.....he,s progressed from his quad bike and has now gone on to a moto x bike.Last weekend he went to pick it up.....when he got home he went round the field once........then came in and collapsed on the setttee for the rest of the day.Later on in the evening we had bad anxieties.....crying...weepiness........not being able to sleep he was really bad.Eventually he came around enough to talk about it and it turned out it was the bike...it was different to ride from his quad (a good kind of different he said )....but he really loved it.The next day he was on it all day and has been ever since ..

Kathryn I hope your o.k. I wish I had the answer to L,s talking ,you must be so anxious right now were all here for you <'> <'> Suzex.

[call me jaded]

Kathryn I have nothing to offer, only sympathy.

 

I've had a few well-meaning teachers tell me that they are sure my son can talk, but chooses not to. I don't think there is anything voluntary about it. Try and hold that thought: it's not voluntary. The important thing is that she is happy.

 

<'> <'>

Edited April 30, 2006 by call me jaded

[baddad]

Hi Kathryn <'> <'>

 

Very very best to you an L both. <'>

I can't begin to imagine how this must feel for either of you, but hope that something positive emerges from the situation soon...

Don't know if this will makes sense, but I have remarked before that our children tend to develop in 'quantum leaps' - and that sometimes they have to take a step back to get the speed up for such leaps. L has made HUGE leaps recently, not only with college and socially, but with regard to the everyday social aspects of life too: Restaurants, hairdressers etc...

It's impossible to pre-guess, but I do wonder if this might be the lead up for another leap of some kind - perhaps something 'we' can identify with or perhaps some aspect of personal discovery/self awareness for L. (?)

I've noticed in the past that for many with AS/ASD, things they feel inherently uncomfortable about get expanded in their own perceptions, to the point that this distortion becomes crippling in itself.

While to the outsider, L's problems with verbal communication appear very minor, there's a chance that in her own head they are magnified massively - a seconds 'pause for thought' seeming like an interminable silence, or a single slip sounding like the worst stacatto stammer? It's only a thought, but I DO think this '70/30' effect can apply to almost any area of life: From body dismorphia through clumsiness to stuff like eye contact or 'shyness'... Under those circumstances, it's quite understandable that on a subconscious level the individual might avoid the 'problem' behaviour altogether...

 

L&P& <'>

 

BD

[Bagpuss]

Kathryn,

 

You must be so proud of your daughter. What she has achieved is wonderful. Maybe her confidence has grown to such an extent that she feels she can just be herself.

 

Take care,

 

Debs

[Guest flutter]

i would wonder if sustaining soo much at college ect is taking its toll, but maybe she has chosen concioulsy or not, not to talk , to take one stress away, cos communication is hard for our kids.

thinkin of you all

C x

[Kathryn]

Thanks for all your thoughts, <'>

 

However it could be that L can cope with everything that she has taken on board and also wants to progress to do even more things, but she can't cope with all of this and talking.

 

You could be right, Oracle, and others who've said something similar. Recently L has been talking a lot abut the future, travelling, living on her own, studying and has been more outgoing than she's ever been - when I took her to the hairdressers a few weeks ago I felt a bit of a twit, having explained everything in advance to the hairdresser, her autism wasn't much in evidence. About a month ago she announced to the consultant psych "I don't think I'm autistic any more" and she seemed in complete denial about that side of herself, choosing instead to focus on her physical disability. So to have her go from that state to this with nothing in between is a bit of a shock. It's hard to grasp that someone who can read aloud well and speak in public, which requires an exceptional command of spoken language, still struggles all the time with spoken communication. She says that after she lost her voice last time, she found it very hard to "teach herself to speak again". She says she doesn't know if she'll be able to do it this time. I don't really know what she meant by that.

 

We know from the review meeting she had with the college tutor that she's worried about the idea of change and moving on at the end of the year - especially the idea of other people in her class moving on to do other things. So this could be part of it. The college are handling things very well, accepting her as she is and trying to put in the right amount of challenge without causing stress. The exams she's taking are online tests which she can do at any time and she's already done some practice ones - scoring very high marks on the English. They have deliberately set the bar low so that she can have the experience of achieving something: she has such bad memories of school exams.

 

All we can do really is sit tight and take one day at a time, I guess, but it's tough, and the silence is unnerving.

 

Thanks for your support, you're a great bunch: It's hard to talk to people in the "real world" about all this - I get the feeling they don't quite believe me!

 

K xx

[melly]

You are right to put all of L's progress first, and dispite this non-verbalism don't forget what she has achieved reciently. She has done amazingly well!

 

I don't speak from any experience, but I would suggest that you keep her using and learning the BSL (as long as she is willing) it is a very natural language and a great form of communication which doesn't need any 'equipment' .And if being able to use this and express herself freely thro this takes some of the pressure off her it may be an easier journey back to speech for her knowing that she can take her time and continue with the BSL untill she doesn't need to any more.

 

It may mean that the family will have to learn some signing, which may seem like a daughnting task, but may well be worth it.

 

Best of luck

[asereht]

Kathyrn,no advice to give.Glad to hear how much progress L has made.

 

I'm sure her not talking is a worry for you maybe things will settle when there is not so much going on for her.

[Guest hallyscomet]

Hi Kathryn,

 

I don't know where my mind is at the moment. I knkow we talked about this the other day, and I completely forgot something crucial that B's paediatrician said when he put him on Risperdal.

 

Give me a moment to explain, it may be worth investigating........

 

When B turned 12 he became non verbal not fully, but had so much trouble talking sense, having a conversation and got very aggressive because of it, as he wanted to say things but for some reason he just couldnt put it into words.

 

After this was thoroughly analysed by the Paediatrician, the doctor advised me that B had no mental energy to have a conversation. He put so much energy trying to fit in, that when it got to conversation, he had no mental energy to carry it through with conversation and this caused him a lot of stress because it happened suddenly.

 

So the Paediatrician said I want to trial him on Risperdal, after two weeks, my son said thank you mum, I finally feel like I can talk properly it was sooo hard before it was like a wire in my brain had become loose and I just couldnt get my thoughts into words, and it made me sooo angry. He wanted to talk to people but he felt like his tongue and his brain were disconnected, causing him a lot of distress and embarrassment so he started avoiding his friends.

 

Two weeks after taking the Risperdal my son and I were having proper conversations for the first time I could remember ever.

 

This is just a hunch Kathryn, his Paediatrician talked about how they were trialling this Risperdal in the US and were finding it really beneficial for kids with Autism because it gave them the "Mental Energy" to have a conversation.

 

Maybe, just maybe, this is the answer. If you like I could try and get B to come on here and get him to tell you how it helped him. what do you think ?

 

Hailey

[Kathryn]

Thanks for sharing that, Hailey. <'>

 

I think this is a very effective drug in the right circumstances, and I'm glad it helped B. L was prescribed Risperdal last year when she wasn't talking and we had an "interesting" experience persuading her to take it. She's made it quite clear she'll never take any antidepressants again and I have to face the fact that in a year's time she'll be 18 and totally in control of her own affairs anyway.

 

At the moment she's happy not speaking, unlike last year she's not overly anxious in a way that's affecting her life, ie she's still eating, sleeping and going out. Naturally, I'd love her to talk again, I miss the spontaneous conversations we were having, but that's my need, and my problem to deal with, rather than hers, I think.

 

K x

[Guest hallyscomet]

Hi Kathryn

 

Just got your PM have sent a reply,

 

<'> <'> <'>

 

Hailey

[BusyLizzie100]

Kathryn - lots of these <'> <'> <'> <'> . Will PM you

 

Lizzie