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

[L0ts]

@121314mum I would also enjoy an update as I am in the same boat too. My 3 year old son talks and says a lot of words, copies etc on his own terms, but absolutely zero communication or understanding really at all 🙁

[121314mum]

@Sunny4124 how are you and your little one doing i seem to be in the same boat you were nearly 3.5 years ago.

[ChaosIsntAPitChaosIsALadder]

There were times we worried if he’s ever talk, come out of nappies, manage ms school etc actually it was all I worried about in the beginning along with if he’d ever be independent

He spent an extra year in the two year room before going into the foundation stage one group because he just couldn’t cope in the environment

Another thing that has improved is his sensory problems, he was incredibly sensitive to noise to thaw point it was impossible to take him out and enjoy anything. He has developed his own coping mechanisms now

Last year and this we have been able to go out for meals, to the park, to the cinema. We even managed goose fair last year

[PatoPotato]

ChaosIsntAPitChaosIsALadder

I love reading things like this, thank you ❤️

[ChaosIsntAPitChaosIsALadder]

Ds was almost non verbal at 3 and had very little understanding or non verbal communication . He was diagnosed with asd at 2.

He’s now 6 and you wouldn’t know he ever had any difficulty with speech or understanding

I’ve just had a send meeting with school and he’s above national average in maths and reading

He really started to come on in reception , before that he was a few years behind at least in everything. He was toilet trained just before he turned 5

[Sunny4124]

Hi Itwouldtakemuchmorethanthis

Ah lovely! My DD is still struggling with nouns/ colours etc but hopefully it will come......

... he can make himself understood, read, tell jokes,understands birthdays/Christmas, plays games, rides bikes, goes on holiday....
Ah, love this! Very reassuring! He sounds so happy and he’s doing amazing :-)

he’s just beautiful inside and out
Love love love this so much!

Thank you for sharing :-) x

[Sunny4124]

Hi Larrissaa

Your description of your Dd sounds exactly like my DD1 when she was 3 and even at age 4
Oh god, if my DD is speaking using 3-4 word sentences and can read/write by the time she’s 5 I’ll be absolutely over the moon :-)

Speech and Language therapy needs to be incorporated into to daily lives for it to work
I do agree with this! I’ve read the article you’ve linked too. She’s been seeing a private SALT who is brilliant, and the SALT has also been teaching us techniques to use with her daily and also going into nursery and showing them, so that everyone is consistent. So she’s sort of a guide really in what we should be doing, but DD is hopefully getting constant intervention from parents/ nursery - and I’ve found that that seems to work for us :-)

I’ll see how we get on but I’ve heard the Hanen books mentioned a lot :-)

Thank you :-) x

[Sunny4124]

Hi StillMedusa

Oh wow, to go from being non verbal at 4 to talking well, sounds like he’s done brilliantly! Well done to him and you! And very reassuring!

The PECS so far has been brilliant... she doesn’t really mimick so we haven’t had any luck with signing, and she just “gets” PECS, although we are in early stages! I’m reading about it as much as I can as want to become proficient in it myself! Have thought about the programmes for the iPad etc, I think she’d like those too, we’ll see how we go :-)

Thank you for sharing, much appreciated :-) x

[Larrissaa]

www.hanen.org/Helpful-Info/Articles/Parents-as--Speech-Therapists--What-a-New-Study-S.aspx

This is an article on the effects of parents as speech therapist and the outcome of parent intervention. From my experience it works

[Itwouldtakemuchmorethanthis]

Another one here with a child with very delayed and disordered language and ASD. At three he had nouns, colours and numbers, and family names except mama ( ). 14 now and his language is clunky and unusual but he can make himself understood, read, tell jokes,understands birthdays/Christmas, plays games, rides bikes, goes on holiday.... he’s just beautiful inside and out.

[Larrissaa]

Your description of your Dd sounds exactly like my DD1 when she was 3 and even at age 4. She could only say the odd single words like your DD1. But now age 5 she can read at level 4, spell and write.Her speech improved greatly in the last 6 months just before she turned 5. She can speak using 3-4 word sentences. I found the “More than words” book Hanen program very useful. It helped us greatly.
For instance previously she would say “water” if she wanted a drink. But insisted on her saying “I want or can I have” before offering her the drink. And I did a lot of prompting. So if she said water. I will prompt saying “I” then she remembers and fills in the gap saying “I want water please “ until she mastered it and uses it for all request. Speech and Language therapy needs to be incorporated into to daily lives for it to work. The SLT sessions delivered for 1 hour didn’t do anything for us until I started doing the SLT myself using the more than words book.

[StillMedusa]

My ds was non verbal at 4, then gradually got a few key words (juice being the first and Gaggy for Daddy) but his speech was almost unintelligible until he was 9 to anyone but his closest family.
But it kept improving and now as a young adult he talks well..and never stops. Granted much of it is either scripted or about his obsessions but you would never know how delayed it had been.
He went to Special School and had a lot of input.
PECS is fab (I'm fully trained as I also work in Special Ed) and the younger the better. It doesn't hinder spoken language at all, and it gives the child a voice. High tech like Grid or Proloquotogo is awesome but sometimes a basic pecs book or even a laminated sheet with photos that a child can point to (of food, people, favourite things) is a great way to start.

[Sunny4124]

Thanks Catandchicken
I’ll check it out! Thanks for the suggestion :-) x

[Catandchicken]

Cerebra do a guide to filling in the DLA form:
www.cerebra.org.uk/help-and-information/guides-for-parents/dla-guide/
I have found it very hard seeing it down in black and white and having to analyse what your child cannot do but completed it over a couple of days; your private SALT will lend weight to an application as will your portage worker - the existence of both acts as evidence of need.
Trampolines, tents, bikes, ipads - Family Fund do all that - and short breaks!

[Sunny4124]

Hi Catandchicken!

Have you applied to the Family Fund?
Ah no, I’ll look into it! Thank you :-) The portage worker has suggested we apply for DLA too, not sure whether we’ll be accepted or not but I figure any extra money = extra speech therapy and sensory equipment (e.g. a trampoline) to help her.

It sounds like your son has had incredible support and is coming on amazingly!

DS is autistic and monologues beautifully and yes, we have conversations - something I could not have imagined when he was three
^How lovely! This has given me hope, as I just can’t imagine it at this point. What I’d give for an actual conversation with her!! I’d love to know what’s going on in her lovely mind! :-)

Thanks so much for sharing :-) x

[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

[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]

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

[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.

[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.

[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

[PatoPotato]

Ellie56

Thank you for sharing that. Your son sounds wonderful.

[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.

[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

[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.