No talking

[theDudesmummy]

I don't expect any solutions or anything, just wanted to express this I suppose. I am having a bit of a down-feeling time around the fact that my little boy cannot talk and is very unlikely to ever talk (no, not even a single word, unless you count "yeah"). I have dealt with, and continue to deal with, the autism diagnosis, the battles and struggles both with everyday stuff and the big stuff like local authorities and tribunals and money troubles....etc etc....I am strong and keep going through everything, of course, like we all do.

But I am feeling sadder and sadder about the nonverbal nature of his life. Language and talking is such big thing to me, it is essentially what I am about in many ways, it is the main tool whereby I earn my living. I talk a great deal, I read and write a great deal. It is what I am best at doing. He can understand lots of language, and he can type out some words on a keyboard (well lots of words really, but not in a conversational way). But he cant talk. It's such a big part of being human and it is denied to him. I am really struggling with this.

Sorry, rather a downer, but I just really really sad right now. Upwards and onwards and continue the battle always and forever, of course. But still....

[chocisonabikinidiet]

((hugs))

how old is he?

[theDudesmummy]

He's just turned 5.

[theDudesmummy]

oh he has intent, he types over and over the things he wants (generally single words only though). it is his voice, certainly, but it's not the same as being able to have a conversation or make comments or express opinions or emotions.

[adrianna22]

Hi theDudesmummy

I can simply relate as DS is four and only says about 10 words. Somedays I do feel sad, but DS issues just makes me more motivated to work on him.


If he can understand loads, did they give you the reason why he cannot talk? Or did they just say it's just apart of the autism diagnosis?

Why is he unlikely to talk?, there's still some chance for him to talk.

I'm lucky in a sense, despite DS diagnosis, he can communicate, even though he has a very limited amount of words. I know that may not make sense, but I've seen a few kids with autism that can talk ALOT,but some, despite their number of words, cannot communicate. The books 'More than just words' and 'it takes two' explains in great detail.

Think about the positives and not dwell on the negatives.

I have found the NAS site useful, but there is not a great deal of speech tips and techniques. So I would advise you to look up on these sites:

ICAN- A communication charity- there have loads of tips, resources, you can even get a call back from a speech therapist. There also have an ICAN school, which I really want DS to go to

Teachmetotalk.com a site by a speech therapist from Laura, she is soooooo good, she has tips, videos, podcasts which are free to download: regarding speech, autism, communication etc. I wish I discovered her when DS was younger/

Afasic- is quite good, but more for kids who have speech disorders, but they have great info.

More than words and *It takes two" by Hanen, heard some good reviews about, though they are quite pricy

It's so easy to feel sad and give up- I felt like that with DS, somedays I would be worrying about him and not doing anything about the situation. But I HAVE to get up, move on, yes it's normal for a mother to worry and I have kind of learnt to accept that DS may not talk as well as his peers or still has his limited amount of words. But like what Laura said LOL " DO NOT GIVE UP ON SPEECH/COMMUNICATION ". You got to work, work, work, work at it. He may not use speech, but he can use other commutation devices, i.e. Makaton, PECS etc.

You and your son will be ok.

[boobybum]

Oh thedudes I know exactly how you feel. My DS is about to turn 5 and when he was first diagnosed I always had 5 as a cut-off point where I thought that if he wasn't talking by then he never would. However, now that I am at that point I have extended it to age 7! If he isn't talking by 7 I will probably have 9 as my new cut-off!

I know you aren't looking for answers and IIRC you are doing ABA etc already? I suppose all we can do is just cherish whatever limited communication we do have. Things will improve but will no doubt be different from what we expected or hoped for.

[2boysnamedR]

Its horrible isn't it. You feel like you don't know them, that they are closed off and separate from you. I was thinking last month I can't remember what its like to hear a toddler asking why does..., what does... can I have.... putting their arms around you and telling you they love you, sigh.

I though my ds would never talk, he was a stranger to me, had no need to communicate or desire to do so. I can't say how soul destroying it was after years and years of just talking to myself. Getting nothing at all back from him, Not a smile, laugh - nothing. He has a language disorder but started talking about two years ago. Then I discovered him. It was all their inside. Now he talks I finally feel like I know him better, and yes he is a strange little thing and says the weirdest stuff.

Your not alone, unfortunately none of us can say when he will talk but its likely he will one day. I never thought I would see a day where me and ds talked - but now we even talk about a lot of rubbish. Its not just his basic wants - he tells me all the bonkers thoughts in his head too. So it did move on from just being a painful necessity for him, now he WANTS to talk - for no reason at all.

I hope you experience that one day too

[hazeyjane]

Sorry you are finding it so hard.

Ds is completely non verbal, but he has a great desire to communicate, he makes jokes and tells me what happened at school, all through sign and gesture - it is hard because a lot of the time I don't understand what his signs and gestures mean, but it amazes me that he gets so much across with zero words. His favourite thing at the moment is to smack his head like Homer Simpson, and wag his finger to sign 'naughty', when someone doesn't understand him.

We are meeting with an AAC SALT this week as he has been assessed as being eligible for funding for an AAC device (mini ipad with AAC app) to use at school (and home).

I have moments where I am chatting to other children at his preschool, and it almost takes me by surprise when I realise that I have never heard ds speak (he did once say 'ama'!!) and may never hear him speak (many children with the same genetic condition remain non verbal). A wave of sadness rushes over me, because I remember the long silly conversations that I used to have with my dds at the same age. But (and I realise that I am lucky that ds is so communicative in other ways) ds will slap his head and wag his finger at me, and I try and move on in giving him as many ways to have a voice as possible.

[theDudesmummy]

Thanks so very much for the support and the replies. No, we do not know why it is he cannot talk, it seems to be probably a motor planning problem, but he does not have other motor problems so it is odd. People often ask "but why can't he talk?". He is very interactive and he makes sounds all the time, so it seems strange to people that he doesn't just come out and talk. We have to just say we really don't know why...

He's had intensive speech therapy since he was eighteen months, then a pretty much full-time ABA programme from his third birthday onwards. Lots of focus on trying to get vocal imitation. No luck though. We are now focusing much more on the typing because that is less frustrating for him (and us!).

I do hope I experience him talking one day, but I am being realistic. He is a curious and motivated little soul, and he knows what words are because he types them, and reads them in books. He wants so much to communicate and this is a source of great frustration to him. He has had thousands of hours of specialist help. And a family who have worked constantly on trying to help him with this. And yet still no speech at all. It seems likely he just cannot do it, because I believe if he could, he would. So I am trying to accept that...

Hazeyjane we are using AAC: we use a Kindle Fire in a nice robust spongy case, with the great (free) software "AAC Apeech Assistant". We chose that rather than the mini iPad because it is better for reading in sunlight (and it is much cheaper!). I would definitely recommend it. (He has an iPad too, but that is for playing and being on the Internet, he does not know that the Kindle can have anything on it other than the single app, or that it connects to the Internet, and we will be keeping it that way! Or else intead of typing he would be watching Mr Maker on YouTube all day!).

[theDudesmummy]

Sorry, typing error there, the name of the software is AAC Speech Assistant. It is available on Amazon for andorid devices. But of course there are other apps for other devices. On the iPad and iPhone we use one called Speak It.

[FreshWest]

Hi dudesmummy We went through the same thing with dd. Every birthday I would feel worse because there was still no sign of her saying a word. Not that she was silent, oh no
Then all of a sudden she started. It was literally overnight. It may sound like I'm exaggerating but I promise I'm not. She was six. Just. She turned six on the Saturday, nothing, Wednesday still nothing, she came home from school on the Thursday and was all of a sudden repeating everything she heard.
So please don't give up hope. It can still happen for your boy.

[ouryve]

I got very down about DS2's lack of speech at about that age. We had the odd blurt out of full, clear sentences and he'd often use a word once, twice, maybe a third time but not very clearly, then never use it again. He has clear oral dyspraxia on top of his ASD, which makes it very difficult to get the reward he needs when he he does say something.

At 8, he now appears to be turning a corner. He counted to 100, the other day. He can't enunciate al the numbers clearly, for example 20, 21, 22 is "titty, bipbeboh, tettytooooooo" but he's saying numbers over and over and is clearly making the effort to be more clear.

He never caught on with signing and is only just beginning to use the odd sign. He's learnt to spell out words and recently brought me his wooden letters to spell out "beans messy" after having baked beans for dinner, the night before.

Like fresh's DD, he's starting to repeat a lot, too. And he can't resist shouting out "cock!" every time he sees a timepiece on the wall :o

So, he's getting there!

[eggsandwich]

Oh the way you are feeling sounds just like me when my ds was young, he's now 14 years old.

Unfortunately this has always been our biggest problem, he has a diagnosis of autistic spectrum disorder at 3, largely due to to his lack of verbal skills he's been put as severe. On the odd occasion he would string a sentence of a couple of words and we would be amazed that it was so clear, but most of the time we struggled to understand.

We were told that because he could say something clearly from time to time meaning every once a year or so, that he was possibly elective mutism which I disagreed with that.

Fast forward now age 14 speech is still a problem but we now use a picture communiction book which I make up of his favourite things that I know that he likes and I often add to it as his taste changes, it helps him to go to the book and point to it while still trying to say what it is that he wants.

I know my ds will never be able to have any kind of limited conversation even though he is fully aware of what is being said around him, that is why we have to be careful if we talk about him because his understanding of what people are saying is so good, they think because his communication is so limited he does'nt understand what is being said, how wrong they are.

My ds left ms primary school at the end of year 4 as it became obvious that he had out grown the school, he now attends a wonderful small ss at the start of year 5. My ds is now in the secondary school on the same site which is small, in a class of 8 pupils and he loves it.