31 month DD developmental concerns - any similar experiences?

[Veebs21]

Hi all,

First post on Mumsnet. Have been doing a lot of reading of this forum for a while but thought I would post to see if anyone had any words of advice/support/encouragement on my daughter's development and behaviour. It might be a long one but I hope some will bear with me and I'll keep it as concise as possible!

My eldest daughter is 31 months and this past week nursery have recommended referring her to the council SEN team for them to come out to see her. They say she is "reading below age in personal, social & emotional development and communication & language". The idea is not for an assessment as I understand it, but to see if they have any suggestions for how they and we can support her development. I have to say on her most recent report her 16-26m are all secure, but several of her 22-36m in the above areas are still "emerging".

Obviously my mind is going to worst case scenarios and what this might mean, when I really have no idea what it means and Google isn't helping... haha. I thought I would summarise main things here to get any feedback/similar situations and how they worked out:

1. She has a lot of words and the majority of it is understandable, but a lot of her longer sentences are those she has heard from us or TV shows, rather than it being spontaneous. However, she is often using them in context (repeating a line from Bing when he talks about a big puddle, when she sees a big puddle, for example). She will fill in the blanks to her favourite books, and sometimes continue "reading" the whole book. She loves to sing songs. However when she wants toys from the toy box she'll often just say "toys" while gesturing at it or "biscuit" when she wants a biscuit. Is this laziness or something more? She used to hand hold to take us to things but that has gotten less more recently.

2. She enjoys playing on her own. She will often look up from what she's doing and say something to gain my attention at what she's doing but if I try to play with her, she's not particularly bothered about engaging with me. She likes to play games her way and any suggestion of anything other can cause a big meltdown.

3. She's not too bothered by other children. She will look to other children in the park and smile but isn't bothered about interacting with them or being around them. If we see friends, their kids will all be playing with/around each other and my daughter will be on the opposite side of the playground. She's better in more enclosed spaces, like a garden, where there are less distractions! However, with her baby sister, she is always talking to her and bringing her toys.

4. She is hit and miss on responding to her name. The times she doesn't, she is usually engrossed in an activity. If I make a loud noise when I'm struggling, she will then often look to me - I am trying to praise it when that happens.

5. The biggest issue - two-way conversation is near non-existent which is tough. Getting even a simple answer out of her is nearly impossible - and I don't know if it's a case of not understanding that she's supposed to respond or that she's just not interested in responding. She can follow instructions (give this to Mummy/put your plate on the table/go and get your shoes) though she can be selective at when choosing to do them! We have recently made some progress with making choices and saying "yes please" or "no thank you" to things.

6. I would say she was quite a late pointer. I think it was around 12/13m before I got her pointing to things in books. I wouldn't say it's a big thing of hers now but she will point to show interest in things and when I ask her where things are in books/on her body etc.

7. I think her lack of being able to get exactly what she wants across at times is causing epic epic tantrums. Real meltdowns that happen at the drop of a hat, usually because I've stopped her doing something, asked her to wait a minute to help her do something or tried to guide her to do things a different way than she's doing them. They can be full body tantrums where she could easily hurt herself or me by the way she'll throw herself backwards etc.

8. Gross motor skills are good - running, jumping, climbing stairs one by one. Nursery say fine motor skills are coming on too in terms of mark making etc. Her lack of interaction/independence in play means I struggle to get her to copy me to play games like threading a bead onto a thread etc.

I'm aware it's been a weird old year. Just wondering if this sounds like language delay type stuff, or more on the autistic spectrum. Or just something that's a bit of a "wait and see" at the moment.

Thanks if you made it to the end!

This sounds very familiar, I literally could have written it myself.

Our daughter is also 31 months and having the exact same delays, she only started nursery a month or so ago and we voiced our concerns- they have said they agree with the delays in communication etc so she's being reviewed by the HV next month.
We are also trying to work on answering 'yes' and 'no' and that sort of thing. She does the odd bit of flapping arms when she's excited but I wouldn't say it's all the time so I don't know.

Sorry I can't offer any advice, just thought I'd definitely respond and say you're not alone

Thanks for the reply lovely. Although I don’t wish anyone to be going through the concerns that come with this, it’s comforting to hear that we aren’t alone! I do understand it’s been a strange year and have days where I think it’s just a small delay and all will straighten out with time, and other days where I think it’s more than that. I have a 6.5 month old and I’m finding it so challenging with the tantrums that come alongside it, sometimes I feel at my wits end. The pandemic has been awful but so thankful to have my husband at home to help or I don’t know how I would’ve coped!

I haven’t even spoken to my HV - they poo pooed me at the 27 month check but nursery have referred her so I guess we’ll wait and see what they suggest.

Yeah it is really emotional, one day we are like 'no, there's nothing shes fine' and others not so much.
I was already in contact with the HV every few months about speech so it's just extended that now that nursery have also chipped in. We are going to meet with the HV next month and she'll access and have a chat with us and then she said she might go and do a visit to nursery and see what she's like in that environment too. Nursery say she does well, she gets involved and is happy there it's just things like getting up from the table at meal times and not listening fully to them 🤷🏻‍♀️ she also has a couple of sensory issues like she won't now wear a coat or have her nails cut.

We are due a second baby in august which I'm nervous for. How did you find the transition? Did your daughter take it well?

Try your best not to worry, I know it's so easy to jump to worst case scenario but we just don't know.

How are you getting on @c307? Just thought I would update that we got an autism diagnosis today. Not a shock and actually feeling better about it than I thought - just need to get things into place for her going to school but thankfully she’s got another year as she’s a September baby.

How has you DD taken to her sibling? DD2 is now 18m and it’s lovely to see their relationship blossom now 💜

Hello - Does your daughter also have sensory and repetitive behaviours to warrant the diagnosis? Going through something similar.

Some mild sensory issues that have got a lot better as she’s got older, but repetitive behaviour/play, yes. I think it was the latter that secured the diagnosis.

Hi @Veebs21 good to hear from you!

Things are okay with us, there was mention of a referral through the HV at one point when we pushed for it, she went into nursery to observe her and afterwards decided to cancel the referral because she said there wasn't enough stance, it would probably get declined from paediatricians as there's nothing she does or did that stood out or effected her day, transitions etc.

There's still things she does that are quirky and different but she's also coming on loads too. Her speech is great, she builds long sentences and stuff now but then we do also still have the quoting from books and tv shows still so 🤷🏻‍♀️

She's happy to play with other kids and gets involved in nursery, soft play, clubs etc so socially I think she's okay. We have had a couple of meltdowns that have made us wonder lately but then I've heard this age is massive for them and for emotions so again it's a grey area?

How's your daughter now? What's she like with all those aspects?

I'm shocked how quickly you've been diagnosed too, I heard it takes ages so that's great!

@Veebs21 I didn't see your original post, but I did think ASD when I saw it.

My ds was diagnosed with ASD (and ADHD) over lockdown-he's now mid teens. It took him roughly a year from when I asked for him to be referred (in March 2020!) for the ASD diagnoses and then another 6 months for the ADHD one.

Firstly: She's is still a wonderful little girl who is going to amaze you with what she can do.
Secondly: It's great you have an early diagnosis. Ds was quite similar at that age, and I wish I'd pushed for him to be diagnosed then. It was a relief for him to know that there were reasons why he struggled rather than he was just different.
Thirdly: Do take any help offered. It's easy to think "you know they aren't that bad, so I don't need to do that." Then maybe 6 months' time you realise that would actually have been helpful. You won't get offered anything you aren't entitled to, so don't feel you're taking away from someone who is worse.

Ds still has major sensory issues around sand. He'd walk 10 miles round to avoid walking 10m over it! He copes with it when he has to now (eg if his class at school went down to the beach he'd go on the sand if everyone else is and they were doing something he wanted to join in with. If they weren't he'd just settle down and refuse all entreaties!)
He doesn't wear a coat either (and is always in shorts, even at school through the winter). In fact I have given up buying either for him as he hasn't worn them for years. he does have a ski suit for snow, but that's the only exception.

@c307 Ahhh I’m so glad to hear it! That’s fantastic news. I heard from someone that 98% of referrals for multi disciplinary assessment are diagnosed so if true that sounds about right that they cancelled it - it seems they are only taking on kids that they’re pretty sure will get a diagnosis.

Your DD sounds to have made great progress and the social aspect is huge, it’s definitely one of the areas that matters in a diagnosis and probably one of my DD’s weakest areas.

My DD has come on so much though - we moved her from the nursery she was at when I first wrote my message above after losing faith in management over a few things & she has done so well since joining her preschool in September. Because of our concerns we decided to send her 5 days (school hours, term time only) from January when she got her 30 hours and it has been fantastic for her.

Since my first post (which I noticed is almost exactly a year ago!) she is almost like a different child. Echolalia is way down (it was a huge chunk of her speech when I wrote this post), spontaneous sentences & chat is up… she can still be lazy and speak in single words to request things like “snack” but when reminded will form proper sentences. We can have a conversation with her now, but it’s usually more functional stuff compared with what I hear from some of our NCT friends’ kids who can have more “idle chit chat” at this age. And while she will respond to me & her Dad I’m not so sure she would have a back and forth with another kid or someone she didn’t know so well at the moment - if a shopkeeper asked her a question for example, I don’t think she would respond.

She’s still quite happy in her own company, though nursery have reported she’s formed a couple of friendships so that’s nice to hear. When we went to nursery to meet the paediatrician she was sitting reading a book with one of her friends really nicely which made me so happy!

However I think what secured her diagnosis is her overall lack of interest in social interaction compared to what they would expect, various repetitive behaviours (stacking/lining up/shorter play sequences that they’d like - she doesn’t do imaginary play in the same way as her peers), combined with the speech delays and some (vastly improving) difficulties with transitions from one activity to the next - particularly if she’s really enjoying what she’s doing! She’s really able to self-correct her meltdowns now though - the paed witnessed one and said she was over it within a minute or two and actually said that might just be age related rather than anything else.

I was surprised at how quickly it all happened too - we were told 9+ months wait in December so it all happened very quickly. Hopefully we can sort out any extra help in time for school next September 😊

@MargaretThursday Thanks for your insight and story of your DS - it has taken me a little while to be at peace with the likelihood of a diagnosis, but it was exactly what you said that made it click with me. She hasn’t changed, she’s the same kids today as she was on Monday. It’s just she has a diagnosis now that can help her where she needs it. And if we hadn’t have got a diagnosis we would’ve been a bit confused and lost at what to do.

DD’s sensory issues have got a lot better over the past year but there are still some there for sure. She’s now happy to have her hair washed, happier around machinery noise etc both of which were no-gos even 6 months ago. She still puts her hands in her mouth when watching TV or when nervous and is a bit of a sensory seeker (loves running/swinging/jumping/going upside down etc) but they’re mostly manageable at the moment. She won’t poo on the loo either , which HV reckons is sensory & I know several friends with NT kids who are the same - but chuffed to be otherwise potty trained (she brings me a nappy if she wants #2!).

Thanks for the comment about help too. I was told by someone on that SN forum here to apply for DLA and I was a bit taken aback as I don’t think of her as needing that much extra help but they said they bet we did more than we realise so I’ll consider it. She’s definitely on the mild side across the board at the moment I would say - though I appreciate these things can change and develop as the child does.

Interesting you mention ADHD - her attention span is very short which nursery says is currently impacting her ability to “access the whole curriculum”. I know they’ve been working on it with her - I mentioned to the paed and she said she didn’t think so but we could look again after she turns 5. She’s very fidgety and even when watching TV can be bouncing on the sofa! But then she is only 3 😂

ADHD and ASD are comorbid so if she has ASH then it is more likely she may have ADHD too.

I found that one diagnosis flowed form the other.
I initially went to the GP on ADHD. When he had the initial assessment they said that they didn't think he had ADHD, but wanted to assess him for ASD. Once he got the ASD diagnosis, they then wanted to reassess for ADHD and he got that one fairly quickly afterwards.

At 3yo they are wriggly little bundles with little concentration normally. Girls on average tend to be less so.
What I remember noticing was at school assemblies, he was the most wriggly. Spinning round on his chair, turning round, jumping when it was his turn to stand up. This was the case until year 2, when he seemed to be able to control it.
What sent me to the GP was aged 12yo, he was going on a small trip with about a dozen others. At 5am the teacher had them all in front of him telling them the format for the day before they left. He hopped round the group the entire time. The others were either older or girls (!) but it just hit me that there was something that was different and he wasn't going to grow out of it, as I'd been told all the way up primary.

I'm not sure if they'd consider ADHD at a 3yo for being "wriggly" but it is worth keeping it in mind, especially once she's at school. Girls can often mask better than boys, although that can mean meltdowns when they come out of school.
I would think of that as something to ask the teachers, they should know whether she's acting age appropriately as they have more to compare with.

@MargaretThursday How strange that they said no to ADHD until they got the ASD diagnosis!

DD is definitely full of energy and expresses it in her movements - I remember saying when she was younger that she just doesn’t walk anywhere, it’s always running! She struggles to sit still for carpet time and needs support to do so but is improving from what nursery have said.

Her Dad was the same apparently, and is NT (as far as we know, at least!) & so chilled/laid back he’s almost vertical now 😂So it could just be her age - it’ll be something I’ll keep an eye on though for sure, thank you x

@Veebs21 we are no way in the clear, I know for a fact there's definitely something with my daughter but nobody else seems to see it or be overly concerned so I don't know what more I can do? I've flagged it to nursery & HV, she's been observed but they don't see anything different. I just feel bad if there is and it's being missed and she's not getting help/support for things. I worry that she masks at nursery maybe (she's in mornings only so comes home after lunch every day) as we can have quite tantrumy stressful afternoons at home. This could just be general tiredness I don't know. She's due to start a preschool in September for her last year before reception and will be doing Monday - Friday 9-3pm like yours so we will probably know more then...

She also has sensory things like not liking hair washing, nail cutting etc and sounds similar to yours in respect of running, jumping, the odd flap etc.

@Veebs21 I think what it was with ds is that in the initial interview (which was zoom because of covid) ds wasn't really interacting with them, but sitting on me and chewing my hair, which was one of his ways of managing new situations. I think then they wanted to put one as priority so chose the one, to them, that was more noticeable.
For both, after the initial interview they said that he was right on the borderline and they'd come back to me as to whether he had the diagnosis or not. In both cases they decided that he was over the line and got one, and I was very relieved.

@c307 I had exactly that. Ds had glue ear (have you had hearing tested as glue ear behaviour can mimic ASD behaviour?) so it was put down to a mixture of that plus "he's a summer boy; he'll grow out of it."
That's my theory why summer boys do worse on average. They don't get the help they need as young because people dismiss them. Winter boys and girls who had the same behaviour as ds were diagnosed year R/year 1, whereas I was still being told "summer boy" in year 4.
If your teachers are still being reluctant, but you think there is an issue by year 1, I would start to push. I wish I had now, but you kind of want to believe them that they'll grow out of it. You can ask your GP to refer, but if the school isn't cooperative then it's very difficult. The school will be asked their opinion.
It does sound like she may well be masking, but as you said, it isn't uncommon at that age anyway.

@Veebs21 hi there I know this is an old post but my son sounds super similar to this and zones out all the time unless he's super interested in something or it's around his needs. Did your daughter get better at answering over the next year? I'm so worried he will keep ignoring other people. He also goes to preschool soon so hoping that will improve things. He currently isn't diagnosed as nursery and the HV have repeatedly dismissed my concerns but I'm sure pre school will flag. Any update would be greatly appreciated!

@NS05 Hello lovely, my daughter is almost 5 now and received her autism diagnosis a year after I wrote this initial post, at 3.5yo. We have got an EHCP for her and she starts mainstream primary school in September ❤️

Reading back my post takes me back and makes me just want to go and give 2021 me a big hug! DD is doing so so well, we have a lot more conversation with her now, it’s always on her terms but she can hold those conversations and absolutely make her needs and wants known. Some conversation is more spontaneous/frivolous about something she’s done etc but it’s usually quite formulaic and she still doesn’t use her language in the same way as her peers - she doesn’t have the motivation to, nor does she have quite the skills to. Her vocab is there but it’s just pulling it all together. She still scripts/uses echolalia a lot but she is more in control of it and can make it much more functional and adjust it to suit a circumstance.

Preschool was great for her and she built some good connections with her key workers and made real friends which made me so happy. She was asking kids to play with her and initiating play by asking kids to hold her hand and come with her, I would never have imagined it.

However, it remains on her terms. She’s still not great at responding to people she doesn’t know too well. If someone comes up to her and asks her a question out of the blue, she will usually struggle to respond and just put her head down - it’s an anxiety thing I think.

She has small back and forth convos with her younger sister, which is so lovely, but I’ve seen her at a playground having a nice time with a child who then asks her a question and she doesn’t respond. We were at a party yesterday and the same thing. I’m sure this will improve over time, but it will be slower and on her terms.

My only advice. Don‘t let people dismiss you, push push push if you have any concerns, and never be afraid to be “that parent” x

Thanks so much for answering, great that she has improved so much @Veebs21 💙