3 year old doesn't understand.

[Cleanta]

Hi everyone.
I have a gorgeous little girl who will be 3 in march. I started noticing developmental issues around 12 months of age. Just little things like she didn't look when her name was called or didn't clap or point or look at anything we would point at. She also toe walkes, I raised my concerns pretty early to my healthvisitor but they didn't seem very concerned about it. Around 2 years she would still not point speak or listen to her name, so I spoke to the healthvisitor again and they referred her to be assessed. There they concluded that she was very far behind with a lot of things and said she would need physiotherapy, speech and language therapist, hearing test and she would start nursery early. Btw I forgot to mention to you guys that my biggest concern was not that she doesn't speak or tippy toes but that she has no understanding of speech, like you can say to a 2 year old "give mummy a block" or " do you want some juice" or "are you hungry?" But she has literally no idea what I'm saying. Fast forwarding a year. She is now almost 3. The hearing test was inconclusive because she got very upset and so there was no way they could do it properly, she's going to nursery and loves it. physiotherapy has still not started and speech and language also didn't start yet. She now looks when you call her name and seems to understand when you say the word juice or come here. She is very verbal and she likes to shout randomly out of nowhere, anger or sadness or happiness, I can hear the difference but as an outsider it probably all sounds the same, yet when she says a word she speaks in a normal volume, she doesnt say a lot of words she doesn't even say mummy or daddy, she can only say juice, clock, socks, shoes, apple, and ana (banana). She also refuses to walk with me, I mean this in a way of when we go outside for a walk or to the store or anything she will literally run away. And I'm not kidding like run anywhere if I call her or say come here in any form happy, sad, strict, she will just run away to anything she will find interesting, she also doesn't seem to be walking, ever, it's always running. This results into her sitting in the pram most of the time. But I dont want that, I want her to explore and show her everything in the store and take her for fun walks in the park. But because she doesn't understand "hold mummys hand" or please stay with mummy " it is impossible to show her that 'you are aloud to walk and to see things but you have to stay close by'. Or even as simple as going to a playground, if we go left we will get to the playground. But she doesn't understand that so she just starts crying like i just killed someone.Because she was going right and I just directed her to go left. But I'm not going to lie even through all the shouting and crying she is so cuddly she always wants cuddles and kisses from mummy. And I have babied her, I admit that, I always spend hours rocking her to sleep because I couldn't hear her cry and stuff like that but eventhough all my friends said not to do that because she'll never learn to self sooth she is a perfect sleeper now. She also isn't potty trained because she gets super upset if I even try and put her on the potty, And again, because I can't really tell her the reason because she doesn't understand what I'm saying or even have a reward system or just act super happy because she's already super upset with me for putting her on the potty.
Sorry for the long text I'm just to the point that I feel like such a shitty mum I am trying so hard to make her happy but I can't explain to her why certain things just have to be done and I honestly feel like I'm traumatizing her by even only washing her hair ( which she absolutely hates) my health visitor says they need to let her develop before diagnosing or investigating any further and I agree but I also think that if she does need special help in any way we need to find out why she does what she does.
Thanks in advance.

@shorty9lncs If it helps at all, I first wrote on this thread over a year a go when my son was 3! He’s now 4.5 and I cannot even explain the difference in him in just 14 months.

14 months a go he was still sleeping in our bed with us, still breastfeeding for comfort, understood absolutely nothing you said to him, refused to even walk to the car from the front door, never knew how to put his shoes on or coat, like honestly he worried me sick to my stomach every single day.

I think I wrote a mini update in March about how much he’d come on from the first time I wrote on here, well a further 7 months on and he’s come on even more. Understands some basic phrases, repeats things you ask him to say and learns when it’s appropriate to say them, has very recently learnt please and thank you, calls us mommy and daddy, says cheese and smiles for photos, if you tell him you love him he says it back. He also walks a lot more too. It doesn’t sound a lot but the fact he will walk from the house to the car, or car to the house is HUGE for us. He has even had days where he’s happy to walk around shops!!

He still struggles a lot but oh my god when I look back he is a different kid. He now has a little 10 month old brother who he adores, he’s learning to share his toys and is so gentle with him and has been since day one, it’s beautiful. Honestly I cannot put it in to words how much he has changed since last year. He’s in reception now and has been doing 3 hour mornings but this next week he’s going to stay for lunch and we’re going to see how he gets on to see if he can start staying full days.

He very much enjoys his own company and can still appear in his own little word a lot of the time but he definitely involves us in his play now, gets us up and about, running around, likes us copying his actions, reading books, getting us to write on his iPad for him so he can copy the words/letters/numbers. His favourite thing to do a few months a go was getting us to pretend we were the bear from the going on a bear hunt story and we’d chase him, it was great.

I hope this can give you some hope that things will get better! If it turns out your son has autism or whatever else then it’s not the end of the world. But I do understand how you’re feeling right now, I really did make myself so poorly last year worrying about him every single day. But if I knew then what I know now I would tell myself to just calm down, he will develop, albeit slowly, but he will develop. It makes me excited to see how he will be in another years time. I will keep updating this thread because these kinds of stories helped me SO much and I hope my sons can help others some day! xx

Hi, thank you for your message. Yes I do know where he has been referred to, but I'm scared to chase it up if I'm honest. The place have been in touch with nursery, assuming to get their input, and told them we're being seen in Feb but I've heard nothing directly.
The HV was quite abrupt with her opinion on my child which left me very upset, and now nursery, I'm just dreading a specialist confiming it. I dont know why I'm so scared, I don't know if its normal to feel this way or if I'm being dramatic. I'm just crying all the time x

Thank you for taking the time to write such a long reply. You've no idea how much I needed to hear a story like yours right now. I'm so happy you've seen so much progress, it must be magic to be able to communicate like that now. You sound like a lovely mum x

It's perfectly Roy normal to feel a sense of grief. If your DS has ASD, life might not be as you imagined but that doesn't mean it's going to be awful.

I can sympathise with you being upset about the HV and what she said obviously came as a shock but I think she has your DS' best interests at heart. If he does have ASD, it's much better to be on the waiting list as soon as he can be. Those waiting lists can be long

I'd recommend looking for a local support group for ASD or ND DC. They should be able to offer some support and information.

Sorry what is ND SC?

You are right - it does feel like grief. I've been so confused by my emotions over this and not knowing how I should feel or how to describe it. It definitely feels a bit like grief.
It may not be awful, I think I'm just so ground down at the moment it's hard to see the positive. Life can be very overwhelming at times! Xx

@shorty9lncs ND is Neurodiverse. Not sure what SC means.

There's a list of MN acronyms here

Hi @L0ts, how is your little boy doing now. My son is almost 3 and my mental health is rock bottom.

Hi @SarahH2024

I just double checked and it’s been another 6+ months since I last wrote on here. So my son is now 5 and he’s still doing really, really well. He went through a phase of autistic burnout throughout January-April and it was very difficult but he just needed some time to himself, some extra sleep whenever he needed it and to do all of the things he enjoyed most - which at the time was sitting on his tablet watching YouTube videos.

Now he’s out of that phase and he’s back to himself. He loves visiting family, going to parks etc and plays with his toys again. During the autistic burnout he didn’t touch a single toy, it was devastating. He still loves us being involved in his play, he regularly has me acting out nursery rhymes whilst bouncing on the bed with him.

When I wrote my last update he was only doing 8:45-11:30 at school. Now he’s there 8:45-1:30 and is doing brilliantly. I never thought he’d be able to have his lunch there as he for the LONGEST time only ever ate in a highchair (this also stopped some time in November) but he is absolutely fine with it. We do get the odd feedback that he took a little while to settle or something little upset him but it’s very rare and it doesn’t happen all that often.

In terms of his speech and understanding (understanding being the thing I’ve worried the most about) he is still very much behind but it is MILES better than what it was at the age of 3. He definitely understands very basic instructions and phrases. If I’d have said to him at the age of 3 ‘Can you just pass that off the floor to mommy?’ He would have no clue. He still has his little obsessions (atm it’s asking us to sing happy birthday), he likes routine, and still does some tip toe walking and hand leading.

He is still in nappies which is something I would love to work on with him but he just isn’t ready yet. We have made progress as in he will now do a poo on the toilet when we put him on it but he doesn’t instigate it himself or tell us he needs one. I know that he will get there in time though, this time as little as 2 months a go he was holding his poos in for up to 3 weeks and it was so stressful for us all as a family.

I truly remember the days of despair when I first suspected my son had autism, I think he was about the age of 2.5/3, I had been quite blind to it before. Now my second son is 16 months old and the difference in them both is astounding, it makes me realise all the signs were there I just didn’t know what I was looking for. But I truly do remember how sad and genuinely depressed I was. I scoured Google for answers and always searched for threads like these, it’s why I will always update when I can.

I’m sorry you’re feeling so down about it, I totally understand I really do, I still can get massively down about it if I think about it too much. I think having my second son has helped a lot, although when I was pregnant I worried he too could have autism but seeing that he doesn’t and that it really is nothing I’ve done wrong that’s caused my eldest to have autism. Obviously that’s not the answer for everybody of course but I blamed myself for the longest time and I think it’s something a lot of us do and it’s just not fair.

@L0ts Thank you so much for your detailed reply.

My little boy is almost 3. He has words - but it's just labels. His receptive language is what worries me most.

He knows his abcs, numbers, colours, shapes - a sign of hyperlexia which us associated with autism.

He hasn't yet been diagnosed, but my area medical officer told me he would be Level 2, although she said they don't like using labels anymore.

I'm honestly sick to my stomach, not eating, not sleeping, crying all the time.

I just hope he starts talking and things get better.

Is your son's autism obvious? You don't have to answer that if you don't want to. I suppose I wonder what it will look like for my little boy in a few years. If people will just know.

I think I need to come to terms with that. I dont want him to be bullied, I want him to have a happy independent life.

We've also talked about another baby but I'm honestly terrified.

So sorry for the late reply @SarahH2024

I would say that yes, his autism can appear fairly obvious. It depends a little as he definitely gets autistic burnout during the dark winter months and it is then that there would be no doubt about it to outsiders that he is a child with additional needs.

But come summer he totally thrives. Suddenly loves being outside again, soft plays, visiting family, talks a hell of a lot more again and maybe it doesn’t appear as obvious to people. I do get how you’re feeling, for the longest time I did worry it would be obvious to other people and hated that people might have felt sorry for us as a family when our life isn’t bad at all, it’s fantastic, I wouldn’t change my little boy for the world.

When he was 3 I did genuinely worry he would never communicate with us. He only ever hand lead and never said what he wanted at all whereas now he does. Your son definitely sounds like what my son was like before he turned 3. He only knew labels, nursery rhymes etc. he never used speech to get his wants or needs met at all.

I am really sorry you’re feeling this way but please, please know that I have been there. I have screenshots of LOADS of these types of threads that I found when he was around the age of 3 because I just needed the positivity as I was so down and depressed about it. But I don’t feel that way anymore, I promise it really will get better.

@L0ts thankyou so much for your messages . I'm currently in the stage of deep despair , at 3.5 I'm so worried for him . How could he possibly go to school . I'm even worried for him at nursery. I noticed today that he was particularly difficult for the staff today as they tried to push him up the stairs as he wasn't budging .
I'm worried the staff will hate having him in as he can't communicate, which makes him very difficult to control. ASD is awful in a world made for neurotypical people.

I pray to God he at least understands what people say to him . This is not how I imagined my life after 10 years of infertility .
I hope your son carries on doing brilliantly x

Hi all, just looking for some positivity and any advice please.
My DS 3 doesn’t understand us. He can count to 20, identify shapes, sing nursery rhymes and call out items but will not speak otherwise. He doesn’t call mum or dad, doesn’t wave, doesn’t interact with other kids and cannot understand simple requests.
We went down the ABA route but I worry this might not be right for him. It’s his receptive communication I really worry about and I don’t know how to help him.
Any advice on what to would help me massively as I am really struggling with this. It’s just not what I expected after 10 years of infertility and several rounds of ivf.

It must be so hard trying to come to terms with this @Soaringhigh, especially with everything you’ve been through to get him

I don’t have any experience of ABA. Does your DS have SaLT and Portage involved and has he had an OT assessment?

I haven’t updated this thread for a while on how my son is doing but the recent comments have reminded me to.

So my son is now 6.5 years old. He has an EHCP in place and just this September (and after over a year long battle with the LA) he is now finally in an independent specialist school. He had an AWFUL last year at his mainstream school, he started hitting constantly, more and more meltdowns and sensory issues, threw every single toy he grabbed. It was truly horrendous and I ended up on antidepressants from the worry and stress of it all.

He is now doing a lot better now he’s in a school that is WAAAAY more suited to him and his needs. In terms of his understanding and development he has made improvements. He now will always say mommy and daddy, he can get his needs and wants met very well. His speech is not like that of a typical 6yo but we understand him and he has come a long, long way since I first wrote on here in 2022.

He is still in nappies but I’m confident that he will be toilet trained at some point. He now says ‘toilet’ when he needs to poop but doesn’t for wees. We’ve had the odd few days there and there trialing him in pants and he does tell us when he’s wet, something he never would have done at 3 or even just a year ago tbh.

It’s been a difficult year overall but in terms on his progress he has made a ton. It’s just a shame it’s come with constant battles for the right provision and support and also his change in behaviour from being at the wrong school for such a long time. It makes me so upset that we had to fight for so long and he wasted so much precious years in a setting that was just making him go backwards instead of forwards.

I like coming back here and reading my comments, I really do hope they help somebody one day as I read SO many of these threads when I was in the depths of despair over my son and his future.