3 years not talking. How LATE did your child speak?

[Putdownthecake]

My little one is 3 in November. He doesn't talk. He says mum and dad but that's it, he's never really got speech. He's developmentally behind in every aspect. I am worried so much about him. Its been suggested autism. He's failed/not responded to two hearing tests and is awaiting a third where he will be sedated and a conclusive result. I don't know much about autism but know its a spectrum. He has many traits which I wouldn't consider autism. He has lots of eye contact and loves cuddles and affection. His language is quite good and he understands a lot but definitely not as much as he should. He is waiting to be assessed. I guess my actual question is, how LATE did your child start talking? I'm so heartbroken at the thought of not hearing his voice. I appreciate many others have it so much worse but just a very sad mummy right now

My DS started talking just before his 4th birthday. Before that he had literally no words. It used to break me that I'd never heard him say 'I love you mummy'.
All the other children in his nursery class were having full conversations at the time and I found it so, so hard.

When he did start talking though, he went from a few words to full sentences within a weeks. My DS has a diagnosis of autism. I was told that this pattern of speech development is quite common for children on the spectrum.

My DS's vocabulary is now incredible. BUT his use of language is very 'unusual' and always will be.

As I'm sure you're aware, communication is about so much more than speech though.
Does your DS do 'joint attention'? eg does he point things out to you and then look at you to see if you've seen them? Does he bring things to show you/share with you?

My DS never did. These are red flags for autism. I would also say that my DS loves cuddles and also has pretty good eye contact. As you say, autism is a spectrum and no two people will present the same.

I am NOT saying your DS is autistic though. Only specialists can diagnose.

Is your DS having any speech and language therapy? If not, I would really push for that.

Thank you so much for your reply @Toomanyminifigs I was starting to feel alone.

Your son sounds wonderful.

My son has always been slow to reach his milestones and in some cases still not reached. He seemed to be normal up until 18 months minus the speech but he would play as you'd expect. He's always been VERY cuddly in nature and would rather play fight/cuddle than he would with toys. He also could never do a shape sorter and would open the 'main door'to dump them all in. He's only once ever said 'all gone' after eating his dinner. He could clap his hands and went through a stage of pointing at everything but now tends to just point to the sky whilst 'talking'. When we go to the park, my son is more interested in the signs that say no football etc and will go walk the park and tap on these. He's also interested in gates so if we take him to a farm for example, he won't care for the animals but how they're caged. He doesn't talk so will drag you to where he wants you to go and communicate his needs that way. He does understand some language. If I say right bath time, he will excitedly go to the bath, same for bed. Bjt if I said go get your shoes, he wouldn't be able to but he would know what shoes are? I used to say to him can mummy have some of your drink and he'd put it to my mouth to let me drink.. now he knows what I'm saying but will laugh and not do it. He used to bring me his books to look at but now he's in his own little world. He's very behind in every sense. His nursery are putting a ehcp in place for him and making a referral. He's had 2 hearing tests, both of which he did not pass but I'm not sure if this was because he didn't understand or just not listening. We are awaiting a third where we will get a conclusive result. The first two were looking at monitors when they made a sound type test. He's always loved the outdoors and walking but over the past year he's developed a obsession almost with picking up sticks and any other straight object, pipe cleaners, even garden weeds! But his toys don't get touched. A jigsaw he'd mess up, a tower block he'd knock down, crayons he will throw on the floor. His behaviour is and has always been exceptional as he's so 'easy' but easy because he doesn't play. His blabbing has changed and this gives me some hope he may eventually talk. He can say mum and dad. I'm just so scared for him. Because he is so behind in so many areas it makes me think its not just delay at this point. He's now started starey type eyes, not sure how to explain it but it's not all the time. To look at you'd probably think no issue but when around others his age, the behaviour becomes very apparent very quickly. He's no longer playing with his toys but putting them in different containers, emptying and filling back up and he gets great joy in this. I am chasing up his hearing test as well as the referral as everything is taking so long. I am looking to go private now

Has anyone mentioned a referral to a community paediatrician? I would push for this. As you are unfortunately finding out, NHS wait lists are getting longer and longer.

You can go to the GP yourself with your list of concerns and they should be able to do it. A community paediatrician is the 'gatekeeper' who will decide if your DS should be added to the list to rule out/investigate various conditions such as autism. A GP can also refer to speech and language - your DS's nursery can too.

If your DS's nursery is applying for an EHCP for him then some of these assessments will be done as part of that process. (My DS has an EHCP.)

Has anyone mentioned Portage? My son had a lovely portage lady. She would come round to play with him every week when he was around your son's age. She showed me games to help with his interaction and language. I know services have been cut very badly though so I'm not sure if they still exist.

It sounds like you are doing a great job with your DS already. My DS is 12 now but I remember the early years being very hard. I had to stop seeing my NCT friends as I just couldn't bare to see how their DC were developing compared to my son.

Life still has it's challenges now but my DS is at a specialist resourced provision in a secondary school and is expected to do GCSEs. Of course no one can predict the future for any child but I would never, ever have thought we would be here when he was 3.

Thank you @Toomanyminifigs

That's so helpful. I contacted the gp this morning and they're going to call in the week to discuss. His nursery are putting a referral to speech and language through but I've been told to expect a 2 year wait and they haven't mentioned much about the ehcp except its happening and they're doing weekly observations to build up a file for their referrals.

I've never heard of portage, how do you go about that?

That's amazing for your son. I'm so pleased for you both. My son babbles ALL the time so I'm hopeful he will be able to communicate verbally at some point. I can imagine how happy you must have felt when he started to talk. Was he completely non verbal before hand? Did your DS babble or make noises?

I would say my son seemed to develop slowly but 'normal for the first 18 months then he seemed to change habits and develop differently. On telling HV it was a constant reply of 'boys are lazy'. I found them to be so unhelpful.

My HV was absolutely useless. She also went down the 'boys develop later' line. I only have 1 DC but I could just tell that 'something' wasn't right, especially when he started nursery.

This is the portage website: www.portage.org.uk/

I'm shocked to hear that you've been told there's a 2-year wait for speech and language in your area. See what your GP says.

I didn't end up using it but I've heard there is a very good book called: More Than Words. It is very expensive though but is meant to be extremely helpful in teaching you techniques to encourage communication.

My DS never babbled. He used to make some strange noises but I don't think, looking back, it was him trying to communicate, it was more that he found the sounds either pleasing or it was more like a verbal 'tic'.

In terms of an EHCP - keep an eye on this. It might be worth you applying yourself rather than leaving it to the nursery. When is your DS due to start primary school?

Hi @Putdownthecake came across your post when googling about my own son who sounds very similar to yours in terms of his, what some would call ‘odd’ behaviour. Although to us we love him the way that he is but I’ve known since he was about 1.5 that he’s a different little boy.

He talks loads, in fact he never shuts up. It is mostly in his own language though or singing. He can copy everything you say but it’s all on his terms. He doesn’t communicate and this is our main problem. For example he can say drink when he wants a drink, he can say bubbles when he wants his bubble machine on, he knows what you mean when you say put your shoes on, he knows what certain foods are at meal times etc. But he will never say ‘mommy can I have this’ or ‘mommy can we go to the park’ sometimes you just have to guess what he wants.

We had a SALT session almost 2 months a go and never got in contact with again regarding a second session which was very disappointing, felt like a complete waste of time. I have mentioned to the health visitor countless times I think he may be autistic but feel it gets brushed under the carpet as ‘this can be common’ and they never advise the next step.

I was hoping as this post is only a year old that you are still around on mumsnet and I was wondering how your son is a year later? 🙂

Hi @L0ts Bless his heart, it's a really positive sign your son talks even minimally! I got told once they start, they don't stop :) my little lad still doesn't talk, but his understanding of language is MUCH better and he's now classed as pre verbal instead of non verbal. We did have to fight for support and he has been referred to paeditricians but in our area it's a very long wait. He joined the wait list in Oct 21. I found health visitors useless. Is your son at nursery? Our nursery have been superb and put his SALT referral through (again waiting to start but accepted) and his EHCP has been approved for the first part so will be in place for when he starts school September 2023. my son hand leads and will know take his shoes to the front door if he wants to go out so to his parents, he can communicate fine, but obviously not how he should be.
You know your child better than anyone and i wish i didn't let people convince me otherwise when mine was still little (i just knew), but being a first time mum i didn't have the confidence which i do now. My advice would be hassle the GP, they should then get in contact with the local community paediatricians and forms will be sent to you and to your son's nursery if he attends. Then they'll decide if accepted or not for assessment.
My son's hearing test was completed and he can hear perfectly well.

He's still very happy. He did go through a phase of hitting himself when upset as he couldn't communicate his frustrations but that has stopped now.
He still keeps himself to himself but i couldn't ask for a happier child so fingers crossed he remains that way!

@Putdownthecake how is your son doing now? Found this when looking about my own who is just over 3 and has minimal words. He sounds quite similar to yours and nursery are looking at putting him forward for an autism assesment

Hi @Emilyplays84
My son is classed as pre verbal. He was 4 years 9 months when he randomly came out with 'love you too'. His understanding of language is getting a lot better. He's in a mainstream school with an asd unit. He's loving it but we are trying to get into specialist. SALT in my area is pointless, they see him once every 3 months. We do pecs at home and he's starting to get the hang of these. He's such a happy lad but clearly 'different'. I can't remember the last time he hurt himself. He talks all the time and it's different sounds but gibberish if that makes sense. I'll
Is your son your first? If so I'd say trust your instincts. My biggest regret is allowing professionals to make me feel he was a 'lazy boy'. Your son having some words is a very good sign. I'd rule out any hearing issues and go to gp. My son has had genetic bloods but they came back negative. Still no official diagnosis but I'll be utterly amazed if its not an asd one if it ever comes!
We give a lot of choices so orange or banana etc and when hw clearly wants something such as a pencils, we act like we do not know what he wants. When he finally gets it, he usually goes 'yeah! Despite how late my son is i truly believe he will talk. I went through a couple years believing he never would.

@Putdownthecake Sorry, I completely missed your reply! Thank you for updating about your son, I'm so glad that you have hope that he will talk. I bet the 'love you too' was an emotional moment.
My son is my third child, never had any concerns about my others and it kind of highlights how different he is. We've noticed a few improvements over half term with his speech but he's had a couple of assessments at school this week and he wasn't engaging. It definitely seems like they get a different version of him and he shows more signs of asd at school than at home. It's pretty certain now that they'll refer for the autism diagnosis.

DS who has ASC and I suspect DLD was just making sounds trying to say the odd occasional word at three. Then at almost four he began saying words and joining them together. He’s had SALT since he was two and a half both at home and at school/nursery, which has helped. Now at seven he can talk in short sentences and is communicating more. He’s language is still immature for his age, he can speak clearly but he doesn’t always. A lot of his language is related to his ASC, Echolalia saying You want something instead of I want. He never really took to PECS but I’ve seen some non verbal children who it’s invaluable to the same as Makaton but DS wasn’t interested in it.. He reached his milestones until age two and a half when he was just slightly behind his peers in a lot of areas. It’s impossible to know how our DC will develop but getting as much help as you can although in a lot of areas there’s a lack of services unless you go private. If you do have good services in your area then I would make sure you get the help DS needs.

My son is 17 nxt month says nothing breaks my heart.

@Putdownthecake Hello some update?

DS is in Year 4 at a generic SS just for Primary school
age, The SENCO and Headteacher have held a talk on high schools for Year 4 and 5 Parents and Carers. On DS EHCP his main area of need is Communication and Interaction which the local generic SS for secondary age cater for this area of need, DS has ASC with medium level support needs and MLD. Do ASC schools cater more for pupils with higher support needs? I know some are for pupils with low level support needs and not so many problems with learning