Will my little girl ever talk? (Likely ASD)

[Sunny4124]

Hi everyone,

Just wanting some opinions/ experiences please, particularly from parents of ASD children :-)

My DD is 3.2, and is currently on the pathway for ASD. Her main traits are severe speech delay (very limited speech - the odd word) and limited understanding of language, and sensory stuff (she’s v sensory seeking). Socially she’s okay-ish.

She is the cutest, smiliest little girl and the absolute centre of my world! I’m finding this whole thing really really hard, as is my partner.

Anyway, what I’m struggling with is this: Will she ever talk? Will I ever have a conversation with her? I’d LOVE to know what’s going on in her mind.

I know no-one can tell me conclusively, but, I’d love to hear from parents of ASD children who had speech delay at 3, to see how they are getting on now, particularly with speech. Are they still non- verbal? Or are they now speaking at a typical level? Or somewhere in between?

Where we are so far: She says the odd word meaningfully: e.g. milk, outside, dada, bye bye, peppa, night night. And that has improved slowly in the last 6 months. Apart from that, it’s either babble (pretty constant and really super cute), or repeating phrases out of context (e.g. bye bye when no one is leaving). We have a private SALT (since she’s been 2.7) who has been brilliant - she first helped us improve her attention and listening, and recently has been helping us teach her PECS. DD has picked PECS up really well, still only on stage 1 but only been doing it for 2/3 weeks and it just seems to have clicked, both at home and in nursery. And whilst she doesn’t point, she’s really coming on with other non-verbal cues, e.g, putting our hand on her empty cup when she wants a drink.

For parents in a similar situation when their children were 3, how is their language now? I’m hoping and praying that one day I can have a conversation with her, honestly if and when that happens I’ll seriously feel like I’ve won the flipping lottery :-) x

[livpotter]

Hi, my ds was speaking in basic sentences at 2 then at about 2.5 he lost all his language and his non verbal communication. He's also very sensory seeking. From 2.5-4 I think he probably only had about 15-20 and that was more at the older end of that age range.

Ds really started regaining some language at 4. He's now 5 (6 in September) and his language has improved massively. He is still only at about a 3 year old level but it is coming on all the time. He's not capable of having a conversation as such but he has finally started answering questions like how are you? And understanding basic two part instructions. All that was unthinkable 6 months ago. The main change is that he has been able to communicate his wants to us, which was a huge source of frustration for everyone.

It sounds like your dd is really responsive, it's great that she is already learning PECS. We use Makaton at home, which has been brilliant for ds and also visuals. OT has also been pretty life changing for him, it has helped him to calm down a lot and given him techniques to help him regulate himself.

I think it's really important to remember that speech is not the only form of communication. It took a long time for me to realise that! Giving your dd as many ways to communicate as possible will really help her. When ds is stressed/anxious his language is one of the first things to go, so teaching him to sign and use images has been really important for him when he can't find the words.

[Sunny4124]

Thanks Liv for your response! It really helps!

It’s so comforting to know that your son has really come on in language at the ages of 4/5. It sounds like he’s done amazingly, what a little superstar! Can I ask what his understanding was like at the age of 2/3? One of my worries is that DD’s understanding of language is minimal (can’t follow simple requests yet etc) and whether that might impact her chances of ever having speech in the future.

DD is on the waiting list for an OT and I’m desperate for her to see one to see how they can help, as sometimes the sensory seeking can really take over. Great to hear that they’ve really helped your DS. If it takes much longer on the NHS we might get a private OT assessment.

I’m loving the PECS and feel comforted by the idea that there’s alternative ways for her to communicate, and that she seems to be getting it. We did try a few makaton signs for a bit - although she didn’t seem to take to it like she did with the PECS, so we are focusing on the PECS first :-) But agree with you, we want to give her alternative ways of communicating :-)

Thank you :-) x

[livpotter]

His understanding between 2/3 and was pretty non existent. He could follow one step instructions if I showed him how to do it repeatedly first. He often didn't respond to his own name and it was very difficult to get his attention. I did quite a lot of intensive interaction with him, which he really seemed to enjoy and respond to. It's weird remembering this now as he is like a completely different child now.

I think a lot of ds's problem was that he was so completely overwhelmed by the sensory issues that he was in no position to be able to learn anything. Between 2-3 we had no idea what we were doing or what he was going through and to be honest he was completely miserable. It was a very difficult period for all of us. Everything is by no means perfect now and he still has some very challenging behaviour but in general he is pretty happy and making lots of progress.

[Sunny4124]

Ah Liv that’s amazing about his progress. It sounds like he’s doing so well - well done to him (and you too!).

It sounds like we are in a very similar place to where you were a couple of years ago, so the fact that your DS’s language has come on really reassures me.

DD also didn’t used to respond to her own name, ever, however to my delight has really improved with that recently (all of a sudden) and been much more responsive. I also feel similar to you that the sensory seeking issues overwhelm her and stop her learning - and the private SALT agrees, that’s why we are very keen to see an OT ASAP!

Any tips are much appreciated. I want to do every single thing in my power to help her communication. Thanks v much :-) x

[cremeegg]

Hey op,

Your dd is so young, so much time! It's great you are already using pecs. Having a private salt is great as nhs salt in my experience is less than useless.

I just wanted to give you a slightly different experience.

Ds is 9 and is non verbal (he has no words at all). He didn't respond to his name till 5. His receptive language vastly improved around 7, it isn't perfect but he understands a great deal.

Like i said he has no speech at all, that certainly doesn't mean that he can't communicate though. Ds uses high tech aac (augmentative assistive communication) to communicate. For ds this means that he uses an ipad with software called proloquo2go (just one of many programs available) installed. This works somewhat similar to pecs. He can construct sentences by pressing buttons, they are spoken using a genuine child's voice.

This is what ds said to me yesterday whilst requesting jelly. He constructed each sentence word by word.

'i want eat jelly please mummy'
'i want spoon please'
'i need help open jelly please'
'can you hold jelly please'

Im sure your dd will go onto gain speech. Basically what i am saying is there are many many alternatives. I always thought that it would be the end of the world if ds never spoke to me verbally. It certainly hasn't been at all! He tells me he loves me and says boo to scare me! It may be in a different way to the norm but that makes no difference to us whatsoever!

[livpotter]

I hope you manage to see an OT soon.

Something that really brought on ds's language was following what he was interested in and building activities around it. He loves films. Initially he would just reneact parts of films he liked. When we realised what he was doing we'd try to join in. Then we got toys associated with the films and I printed and laminated pictures of his favourite characters.
I remember a big breakthrough in communication was when I put some of the laminated images on a key ring and he took them into nursery. I'd just intended them to be something for him to flick through when stressed but he used them to show the other children and to try and start conversations with them.

That's amazing cremeegg!

[DuckWillow]

Hi OP, she sounds like my DS at that age, he had nonsense language, lots of babbling with the very rare word used . By age 5 he was talking in sentences, by age 7 his vocabulary was off the scale in terms of age.
His level of understanding remained very very compromised which was masked by his verbal skills.
He’s attended a special school from Y8 and is now 16 but emotionally and psychologically around 11 so he does still have delay.

[Sunny4124]

Thanks everyone for your responses, much appreciated! Crazy day today but will respond more fully soon! Thanks :-) x

[LightTripper]

This is a bit of a distraction from your main topic (sorry) but on the sensory seeking there is a nice YouTube video from Purple Ella on her family's sensory aid kit (she is autistic as are two of her 3 children) and there might be some things there that your daughter would like if she is in sensory seeking mode?

[Sunny4124]

Cremeegg thanks so much!

Oh wow, your son is doing amazingly! I’ve heard of things like this, via the iPad and actually thought that they’d suit my daughter, she flaming loves the iPad (a bit too much in fact) and is becoming quite good at scrolling around for different videos etc. So I think it’s something that would interest her. Is the program super expensive? LOVE the jelly requests!

He tells me he loves me and says boo to scare me! It may be in a different way to the norm but that makes no difference to us whatsoever!
^I LOVE this so much! He’s obviously got an amazing family to support him! :-)

I’m hoping that because we are getting the odd word from her at 3, then she might end up talking to some extent (let’s see). However, it’s lovely to hear from another Mum about it not being the end of the world if she doesn’t. Love your positive post and point of view - Thank you so much :-) x

[Sunny4124]

Liv

Thanks so much for your for brilliant suggestions and advice :-)

And yes can’t wait to see an OT! I’m hopeful that it’ll be a gamechanger for us and her private SALT is desperate for her to see an OT as she thinks her speech is distracted by sensory stuff :-) x

[Sunny4124]

Hi DuckWillow

Ah, so interesting (and reassuring!) to hear, thanks! If my daughter is talking in full sentences by 5 I will literally be crying with joy! Sounds like your son is getting on great :-) Thank you so much for replying/ sharing your experience, really helps! :-) x

[Sunny4124]

LightTripper
Thanks so much! I’ve seen Purple Ella videos before, but not this one! I’m going to check it out as it sounds like it’ll help us! Thanks :-) x

(PS, sorry for replying in loads of different messages, my brain can only hold so much information at once lol. THANK YOU for all the replies, I really appreciate it!!!)

[cremeegg]

That particular program is £249. Other programs such as grid for ipad allow you to pay a monthly subscription. It's not something you'll probably ever need. It became obvious to us as ds got older that for him speech was never going to happen.

Your dd is in a totally different position to what my ds was at the same age. He didn't pick pecs up quickly at all. He's had about 4 words his entire life, the pronunciation changed overtime before they disappeared entirely. It sounds like your dd is making really good progress. Just wanted you to know either way, she'll be just fine.

[Sunny4124]

Hi cremeegg

Thanks so much! Good to know what tools exist should we need them! I’m so glad that your DS has got a way of communicating that works for him and that he enjoys! Sounds like it’s been a game-changer for you and that he’s getting on great :-)

Just wanted you to know either way, she'll be just fine
^ This is what I need to hear, thank you :-) x

[Bouncingbelle]

You could be describing my little boy! 3 at the end of this month (tho 2.9 corrected) and no words at all. To hear him speak would be the greatest gift of all. Lots of non-verbal communication IF he is in the mood. Makaton not worked for us but waiting to start pecs soon. Just so worried for his future.

[Sunny4124]

Hi Bouncingbelle

I know hey! I think as a parent you just take for granted that your child will talk, and when they don’t, it’s incredibly difficult to come to terms with.

Makaton didn’t work for us either, she just wasn’t interested. But she just “got”’PECS, and it’s really reassured us - I’d definitely give it a go, especially if your son sounds similar to my daughter. If you need any more details on what we are doing/ how we are teaching her PECS etc just let me know.

Just so worried for his future.
^Yup, same here! The thought of life not being as easy for her makes me so sad, she’s my absolute world. I keep telling myself that she’s happy and healthy and that’s the main thing :-) I think I’m slowly coming to terms with everything, I’m just desperate for a conversation with her. One day hopefully :-) x

[Ellie56]

Our second son was referred to SLT at the age of 3 and was diagnosed with a "severe and complex language disorder" at the age of 4. This was both expressive and receptive language.

DS2 could barely string a sentence together and a lot of what he said was complete gobbledygook with the occasional recognisable word. I remember once hearing a much younger child say to his mum, "What are they doing?"and it struck me then that DS2 had never asked a question in his life.

Half the time we struggled to understand what he was trying to tell us. Frequently he cried himself to sleep because he couldn't get through to us. And the despair I felt at not being able to get through to him was indescribable. It was as though there was an invisible brick wall between us and I just felt so useless.

DS2'S receptive language too was extremely poor. He didn't get excited about Christmas because he had no understanding of what Christmas was, so on Christmas Eve he just went to sleep as normal. How do you explain about Father Christmas and presents to a child without understanding?

And we had a lot of behaviour problems as a result of his frustrations at not being able to communicate. Some of his behaviour was so bizarre, we were convinced he was autistic. At that point I couldn't see how he could ever go to a mainstream school.

The key to everything was the intensive support and intervention that was put in early. He had a Statement of Special Educational Needs (now EHCP) while he was still at nursery school, which provided for at least 15 hours 1:1 support and this transferred to infant school. He had intensive speech and language therapy with a specialist therapist for several months. The Speech and Language Therapist went into school to work with him directly, and gave the TA tasks to carry out each week. DS2 was eager to learn and responded well to all the support he was given.

By the time he was 6, DS2's language was age appropriate, he was doing better than most of the other children in his class, and his Statement ended. The following Christmas when he was 7, he was given the part of Joseph in the Y2 Nativity play, which was a major speaking part. It was a measure of how far he had come.

DS2 is now 25, a graduate from Manchester University and working for the NHS.

[PatoPotato]

Ellie56

Thank you for sharing that. Your son sounds wonderful.

[Sunny4124]

Hi Ellie56

Oh my word, thanks so much for sharing your son’s story. I found it so uplifting, and read it out to my boyfriend too, who also found it super helpful! If she is caught up by 6 I will literally cry with joy :-)

I can relate to how you felt about Christmas, my little girl doesn’t get excited about Christmas/ birthday etc as she just doesn’t have the language to understand it, and that makes me incredibly upset!

Thanks for sharing again, your son sounds amazing :-) x

[Bouncingbelle]

@Ellie56 your post just made me cry - for the pride you must feel in your son and the hope it has given me. Thank you.
Receptive language is also a real stumbling block for my wee boy. He is just starting to show some limited understanding now. Im looking for sensory toys for his upcoming birthday, which he will have no understanding of or exvitement about, and it breaks my heart.

[Dropthedeaddonkey]

My son also had short sentences at 2 and then lost almost all functional speech and would only use yes and no. We have done ABA (which pecs uses) and while he learns language slowly he is always improving and gaining language and understanding. He is 12 and his language around age 6-7 but it varies according to his interests so he will talk about things he’s interested in and can use sentences but everything else he will default to 1-2 word answers if he can get away with it. He can sing whole songs and memorise long strings of information but that seems to use a different part of the brain than language which he needs to come up with in the moment. The motivation / reinforcement element has been crucial for him as he uses very little of the language he has. But he is able to get his needs met and mostly explain things eg if hes sick etc and hopefully he can stay in education into his 20’s and keep learning. He will occasionally ask what or where questions I don’t think he has ever asked a why question. I would recommend going on the pecs course if you haven’t done it as it’s not always taught properly and I found it helpful to be taught by pecs experts. Also look at ABA approaches to teaching language. Theres a website called APSparks which shows programmes also a website teachmetotalk.com has ideas of toys that you can use to encourage language. Very occasionally when my son is really motivated he will speak in several sentences and it’s just the best thing in the world. He once was in a shop and asked me for a large soft toy about 4 different ways I’m sure the shop assistant thought I was an incredibly indulgent mother as I just bought it for him it was literally the first time he had asked for anything and he was about 8 then. He has phrase speech not conversational speech but I don’t think that is beyond him I think it’s something he will be able to do. He can read and follow written instructions as that gives him more processing time so he could for eg follow a simple recipe. So I write down a lot of things for him (which is a lot quicker and easier than when we had to use pictures). So you find ways to work round it.

[Sunny4124]

Bouncingbelle
Ellie’s post made me cry too!
My little girl has such limited understanding and I find it so hard at Christmas / birthday - especially when people come with presents and she just doesn’t get excited and doesn’t understand what is going on. I’m hopeful that will come in the next few years. All the best to you and your son :-) x

[Catandchicken]

Sunny - have you applied to the Family Fund? They have provided us with an ipad in the past.
DS lost language around 18 months and it came back - with lots of SALT - over the next 6 - 8 years. Our area has Speech and Language Units - his was amazing. The class signed (BSL) too - but he totally rejected it. After that was Tribunal and a small indie special school, where the SALT was one-to-one and fabulous.
DS is autistic and monologues beautifully and yes, we have conversations - something I could not have imagined when he was three.

[Sunny4124]

Hi Dropthedeaddonkey

Ah it sounds like your son is getting on well with his language.

I would recommend going on the pecs course if you haven’t done it as it’s not always taught properly and I found it helpful to be taught by pecs experts. Also look at ABA approaches to teaching language
Good suggestions, thanks! The PECS has been taught to us by a private SALT and the portage worker, who’ve taught it the same way, so fingers crossed it’s correct. But I didn’t even realise there were courses. And we’ll look into ABA (although I know it’s controversial), thanks :-)

Very occasionally when my son is really motivated he will speak in several sentences and it’s just the best thing in the world
^Love this so much :-) I hope we get this eventually too :-)

Best of luck to you and your son, thank you for sharing :-) x