Spiralling with worry for 3.5 year old

[scaredandspiralling]

I know I should post this in 'child development' but that board is so quiet and I'm really hoping for some responses, please.

I have a 3 yrs 5 month old daughter. She was six weeks premature but no major health concerns, neurotypical older brother (6). Attends nursery four days a week. She's always been a but of a little weirdo in some ways, but we had no major concerns for her development. She's a lot more shy than her brother and very self-contained, can play by herself very happily for ages, but hit her milestones normally, settled at nursery, starting to play more with other children, speaking fine. She was showing a slight interest in potty training, finally.

But this last three or four weeks, we've noticed a huge change in her. She's started running up and down the room over and over again. She makes noises sucking her teeth, like a tic. No interest in potty training and she screams if we suggest it. She's enormously 'in her own head', having imaginary conversations (out loud) between different characters what feels like all the time - she's always done this a bit and it seemed a good sign of imaginary play, but now it's constant and difficult to get her proper attention. She does still want to play with us, but always in role-play, e.g. "you be Ryder, I'll be Chase", and she keeps this up for ages, even as soon as she wakes up, and uses it to say what she wants, e.g. "let's go downstairs, Ryder."

Her eye contact is fine, she can talk about her emotions (e.g. "he's making me upset!"), and nursery say they don't have any concerns, but have noticed the behaviours we've described.

We've made an appointment to speak to the health visitor but that's not for a couple of weeks and I'm spiralling. I feel like I'm losing my little girl. I think back to the way she was engaging with us only a few weeks ago and I want to cry.

Is this how autism presents? Would it be so sudden like this? If not that, then what?

Please help.

A lot of 3YOs will be resistant to potty training, it’s why a lot of the so-called experts (Oh Crap, Gina Ford) recommend you do it around 2, and ideally no later than 2 and half because older ones can do and do really dig their heals in.

Imaginative, role play and small world play is very typical for that age too. Anecdotal but I’ve noticed girls often tend to be more into it than boys.

The running about, maybe she has excess energy to burn?! IDK, I don’t think it sounds massively concerning but I’m not going to dismiss your instincts when you know her best of all. I would ask nursery. They see so many kids and know her well so they’re best placed to advise if there’s an issue. If they’re happy I would be too.

Thanks @InTheRainOnATrain I agree re potty training and her brother did it much earlier, but she’s never been even slightly interested. I feel like we missed our chance when she was younger.

My maternal instinct is telling me to worry but that also leads me to spiral into panic and fear that she’s regressing and we won’t get her back.

When did she start nursery? Sorry if I've missed it. Have there been any significant changes at home or in nursery etc even things you might not have thought she'd be aware of? I wouldn't panic just yet, I think getting a chat with your hv is a good call and will help you find a direction for these worries.

It could be that she's processing something and is just working that through as most children process through play and movement. She'll still be having developmental leaps at this age even if they aren't always as noticeable.

I would also say that nursery are seeing her often in the context of her peers, if something was off it should be very noticeable to them because they've direct comparison between her and other children. So the fact they haven't raised concerns to me is very reassuring.

Autism presents, differently in differrnt children,nnobody on here can say wether she has autism or not
Speak to your health vistor with your concerns, and ask for a referral to the community paediatrician.

Have you read about schema as children develop. https://www.onehundredtoys.com/understanding-schema-play-in-toddlers/

Thanks @Lavender14 she’s attended nursery since she was 14 months and has been at her current one for more than a year.

I can’t think of any big changes recently - she was slightly under the weather with a cold and at first I thought it was that, but now it’s been going on too long.

She’s always been sensitive but I used to think it was just personality. Now I wonder if I’ve been missing red flags along the way.

My DD was eight weeks premature, and could do all the things you describe at 3.5 in terms of eye contact, talking and doing fine at nursery . She was also very into imaginary play. Because she was premature, she had regular assessments with a paediatrician up to the age of five and no-one (doctors or nursery staff) ever flagged up any concerns.

She started having problems at school at about the age of ten and was subsequently diagnosed as having autistic traits. Looking back, I can see that some of these traits were noticeable when she was 3-4 years old, especially the role-playing games which she wanted to do over and over and over again! She also was very sensitive to some clothing, some food textures, hair washing/brushing, and, sometimes, loud noises which could lead to her losing control, but I just put it down at the time to toddler tantrums. Are there any factors like that which might be upsetting your daughter?

No-one on MN can tell you if your DD is autistic, and autism definitely presents in different ways. What I would say is that, even if she is diagnosed as being autistic, there is a wide range of autistic traits and a wide range of autism-related disability, and the label does not change who your DD is.

In our DD's case, she is now 16 and doing extremely well academically with no special support/adjustments needed. She can also negotiate life outside school very well but her diagnosis means that we understand some of her social "quirks" and can help her negotiate life successfully with them.

I would also say that children go through developmental phases. Our DS developed a bad stutter when he was at nursery school - enough for us to have to see a Speech and Language specialist - but the stutter vanished again about 4 months later and he is incredibly articulate now (far too articulate, I might say at some points!).

Try not to worry (easier said than done, I know!), and cross each bridge as you come to it. Hopefully, your Health Visitor will be able either to reassure you or to refer you on to more specialist support. Note: Health Visitors cannot diagnose autism!

Thank you @Redbushteaforme for a very thoughtful response. Your daughter sounds lovely.

I think it’s the sudden change that is really alarming me. She’s always been a bit quirky and definitely not as straightforward as her sibling, but I felt she was making good progress and now I feel she’s going backwards.

I’ll definitely ask the Health Visitor for a referral to get her assessed.

Interesting article, thank you @CateinEd

And I should have said @Redbushteaforme she doesn’t seem too bothered by sensory things, but she has always been a reluctant eater and her sleep is bad (was starting to improve after she turned 3 but now terrible again).

What’s the bacterial infection that can cause personality changes in children - can someone remember? I see it mentioned on here quite often.

It doesn’t sound unusual to me.

My DS was diagnosed with ASD and ADHD last year aged 7. We hadn’t noticed anything too out of the ordinary, as ironically he presents very much like me when I was his age! We paid privately as the waiting lists for the NHS are ridiculous.

Nobody on here can say whether your child has ASD or not. What I will say though, stereotypes are not useful. I too thought, ‘DS cannot possibly be autistic because he doesn’t do XYZ’. My DS has a fantastic imagination; he is constantly writing stories and comic books. In fact, English is his strongest subject at school. He is a sensory seeker rather than avoider, so sounds similar to your DD in that he runs around, makes a lots of noise 24/7. He gives good eye contact with people he knows well and trusts. He loves cuddles and socialising, he’s just socially clumsy. He doesn’t have one obsession like the stereotypical trains, but rather a collection of interests.

What I am trying to demonstrate is that ASD can present very differently to what may exist in our minds.

I also understand the shock and upset at thinking something is ‘wrong’ with your child. BUT really, my DS is lovely, happy and thriving and that’s all that matters. His diagnosis doesn’t even factor into his day-to-day life really, it just means he can explain and understand his behaviours. For example, when he’s being exceptionally noisy and we tell him to calm down as it’s becoming headache inducing (!) he will acknowledge it’s part of his ADHD, understand constant noise can be too much for other people and go to his room to continue to make noise. If your DD is autistic, she will be more than fine too.

Some nurseries and reception classes incorporate schema into their planning, to support children to develop through their interests.

Hard to say, it's so easy to worry over them.

On the other hand, when I was reading you, it reminded me of sudden-onset regressive autism or childhood disintegrative disorder. They're both very rare though and it's more your self-described gut feeling and the sudden change that would worry me.

Do you know yourself to be an overworrier?

@TitusMoan is it PANDAS/PANS? I did actually wonder about that but it seemed a bit far-fetched. She did have a fever for one night just before this began but then it turned into a cold and went away.

PANDAS?

Look into PANDAS my son was like this after getting a strep A infection. It came on overnight, the tics, personality changes, not listening to us, and over hyper. Its been a long road with lots of doses of antibiotics but we got our boy back. It also depends what GP you get whether they listen to you about this or not.

Yes, PANDAS can cause seemingly overnight behavioural changes due to bacterial infection - it’s still not very well understood, but might be worth exploring, especially as you mention sudden onset of tic-like behaviours.

She sounds like my daughter at that age. She’s NT. The role playing used to drive me insane 😂

And she used to make me count how many laps she’d done around the dining table. Over 50 one night!

Have you spoken to Senco at nursery? Our Senco is great but it varies as the one at his last nursery was rubbish.
If you give consent they can also talk to the HV and all of you will be aware of what's being said.
Autism is hard to diagnose without seeing /knowing the child. My DD didn't show any signs until she was 7.
DS is 3 and I have had suspicions he may well be autistic since he was 2. So I think the signs can start at any age and it can be sudden. DS was beginning to talk (late) but then just became non verbal.
However it doesn't mean your DD will be the same. She might just be going through a stubborn phase. I would talk to the Senco as, she'll be able to observe your DD at nursery fairly easily.

Nursery didn’t flag anything with my DS either and he went full time from 3 years old to a nursery with SEN provision. It was only when he went on school that the differences between him and his peers became more noticeable.

If it's any consolation my DS has just turned 5 and regularly tells me that he is various different animals (we have about 4 different types all with names), and I get "told off" if he has told me he's one of them and I call him by his actual name.
Since starting school he has become a bit of a handful, quite boisterous and won't sleep (nothing new there) but I think he's probably just tired/over stimulated.

Do think about PANS/PANDAS. It is really not that uncommon. My own ds has a diagnosis of PANS and had behaviour changes after an illness.