Non verbal experiences

[doadeer]

Hello,

I'm hoping to hear from anyone with a non verbal autistic child, how did their communication develop? What stages were there? And did verbal language ever come?

My son is nearly 3, he has just started taking our hand to take us where he wants but communication very limited. I'm doing some basic makaton signs to encourage his comprehension.

Just wondering what the future holds for us... The unknown of it all is such a challenge, and knowing how best to support him.

OP, when you say AAC is expensive, what do you mean? DS is non-verbal, but uses text to speech. He has the cheapest smart phone available (around £50) and the AAC software is completely free on Google Play (we use Speech Assisstant AAC). I did pay a one-off fee of £10 to get a specific voice that I like on Acapela Voices. That is it, for him to have his own voice.

@theDudesmummy

OP, when you say AAC is expensive, what do you mean? DS is non-verbal, but uses text to speech. He has the cheapest smart phone available (around £50) and the AAC software is completely free on Google Play (we use Speech Assisstant AAC). I did pay a one-off fee of £10 to get a specific voice that I like on Acapela Voices. That is it, for him to have his own voice.

Text to speech apps are only suitable if the user can read and type out what they want to say. Symbol based aac apps are far more complicated and most of the really good ones do have a significant cost.

OK, I see, you are talking about symbol-based apps. It is a pity that they are so expensive then, when text ones are free.

@doadeer do you have any update on how your little one is doing now? My twins are just turned 3 both non verbal x

My son started saying words around 1 year old (although we already suspected autism at this stage due to a lot of repetitive behaviour, no joint attention etc). He learned a lot of words quickly, by 18 months he could name colours, animals, count to 10, he knew the alphabet, by 2 he could count to 100 and draw letters and numbers too and he would sing songs, he memorised where countries are on a map. Very little actual communication though, he would use maybe 5 words to communicate and not often(like drink, crisp etc). He never pointed or used other gestures to communicate.

Around 2 and all half he regressed and lost most of his language and then regressed again around 4 and now he has none at all, he'll be 6 in August, I can't remember the last time he said a word. He makes a lot of random noises but nothing like actual words. He doesn't draw anymore or have much interest in anything.

He only communicates now by grabbing your hand and leading you to what he wants. We've had no luck with signing, pecs or anything like that.

Its hard to know what the future will bring, last time we saw his paediatrician he was diagnosed with severe learning disabilities,on top of the autism diagnosis he got at 3. And it does appear so now, he doesn't respond to anything and doesn't appear to understand anything that's said to him. But it seems weird that he could do all that stuff before and seemed so intelligent and now he is like this. So im not sure what to expect in the future.

It’s a really good question OP. DS did say the alphabet age 3, but no social language, no ‘mama’, no asking for anything and did not respond to his own name even.

Now age 11 he can talk, it’s still difficult for him, he takes a long time for words to come out and doesn’t really talk with his friends. But amazing really from when he started.

I found services frighteningly slow and ineffective. When we eventually did see a (private) speech therapist, she insisted on PECs which DS did not get on with at all. She had no other solutions. Neither did anyone else we saw. I tried signs / aacs - did not work. (Just to say some of my friends found a lot of success with PECs, and AACs and signing, just not us).

The only real information was from other parents. One said that my DS seemed to have ‘some echolalia’ which he said was a great sign. That one observation was probably the most helpful. DS did indeed sometimes repeat a sound (such as the alphabet). This was what I built on, I learnt the basics of speech therapy, well anything out there and I trialled which ones DS seemed to get on with and basically spent a good while every day just helping him with speech.

1. What is your child able to say or understand now?
   That question is really, really vital. Your child is able to ‘make a good range of sounds’ - that is your first building block.

2. What engages your child, what motivates them? What do they like?

3. What non verbal communication do they like - peek a boo or copying, anything that is ‘back and forth’?

Take those 3 things above and work on them is my advice. Get down to your child’s level and let them lead. Do loads of non verbal communication, as much as you can. Build up physical activities that they love through OT, trampoline, laugh together. When he takes your hand to get something, wait a little bit (seconds not minutes!) as you hand over the object and say the ‘sound’ that you think your child can do. So if you child can sound ‘ka’ and you give them a cake, wait a little and say ‘Ka Ka ka’ in a fun way, never ‘teaching’, and associate those sounds with the objects all the time.

Let your child lead all the time and follow their activities and look interested. I think that is key, you need to enter their world. Bring in language in a very simple repetitive way.

You could do this as well as AAC experiemention and using signs also. For me, well for my DS it’s like he needed loads and loads of repetition, but always in a fun playful way that followed his lead. For a while I just joined in the alphabet, which he loved.

Also songs are great! Fill in songs. I did a lot of ‘abcd’ song where I’d leave out a letter.

Found it really interesting to read this thread.

My DD is 3.5yo and mostly non-speaking. She had quite a few single words, or 2 word combinations until she was around 18m then gradually stopped using them / not picking up new until she no longer seemed to have any around 20-22m.

She makes loads and loads of noises so I would find it hard to say non verbal, but almost always we don't know what they relate to. She will count and sometimes recite nursery rhymes but mostly it's more 'babbling' (although the same sounds / combinations again and again, so we are trying to do the guess work to find what they might be). E.g. when she has meltdowns she often says "doooh wee wee" and I realised this is "dont worry" (because I have said it a lot I guess when she's worked up). Or sometimes she will say "hello Peppa hello George" which relates to peppa pig but is used at (seemingly) totally random times. SALTs have said we need to try and figure out when / why she uses these chunks of words - also because she likely picks up chunks more easily than single words (gestalt language processing, common in autistic kids) we should focus on giving her more of these e.g. "let's go play", "time for dinner" rather than pushing single words. Have also heard it's important to acknowledge when they 'say' something even if unintelligible. So I do try 'Oh is that right?' 'OK!' that type of thing.

Like a couple of others I have had no luck with PECs so far. Was suggested recently that we should try using photos rather than the black and white images because maybe DD is not yet able to generalise - makes sense to me so will try. So many hours of laminating for no results ;)
Signs / makaton I know they try at her pre school but to be honest I just don't have a good handle on them so haven't tried fully at home yet.

All the advice from @CherriesSpring is great too, we have definitely made progress in building more interaction in recent months, which I think makes sense as being a building block to communicating.

She's recently started pushing us to what she wants, which we saw as positive step that it's some form of communication, but then I see from others here that that can last a long time so maybe it isn't necessarily progress after all.

@Snailstorm that sounds really hard, thanks for sharing your experience and hope that things look up for you. The uncertainty is tough.

It is really interesting I agree @Ahna65

Although honestly I’m shocked by how little we as parents are supported in this, our kids have a huge need for support and in the 21st century you’d think we could help kids to communicate as a priority!

I also find that the neurodiversity movement just doesn’t focus on this at all so it’s sidelined, or someone is wheeled out who can type beautifully and understand language but doesn’t speak - as if that happens by magic without any input or support. And that isn’t the case usually, kids like ours do I think need a certain ‘environment’ that is rich with opportunities for their communication, specific quality input.

For us as parents, for me anyway, it’s been a lot of patience, tuning into my child completely and understanding his specific needs - and has been a marathon not a sprint. For me it was lucky as it seemed that if I helped my child to a certain ‘ledge’ or level he seemed to then run with it for a while, before he stalled but had made progress. Now I think he is able to learn for himself mostly, but only in a safe good environment which is usually at home.

Good luck to everyone and your kids.

@Newrunner29 hi have you got any updated on how is ur daughter now am exactly in the same shoes with my son now if u have any updated please I will so much appreciate it a dsperate mama here