Spiralling with worry for 3.5 year old

[scaredandspiralling]

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 bit 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.

I just don’t know what to think.

My in-laws spent a few hours with my daughter the other evening and said I don’t know what you mean, she seems absolutely fine. Then she got tired and started running up and down and they frantically tried to snap her out of it and couldn’t, and you could see they were really alarmed. I feel that way too - sometimes she seems so tuned in and ‘normal’ and then it all changes.

Oh this is exactly how things were with my eldest. She can seem normal, in short bursts, like if it's just a few hours together doing something fun. Before she started school, everyone used to say 'no she's fine'. It was only when she started school it suddenly became really obvious. That's the thing with Asperger's, it's often not immediately obvious to those outside the immediate family.

To be honest, every day that goes past she seems more and more externally obviously ‘different’.

Sorry, me again. Still more than a week until we see the health visitor and she’s worse every day.

Now she’s barely answering her name at all, no interest in the toys and characters she used to love (a month ago!), won’t smile for the camera. She’s barely calling me Mummy.

I can accept that I may have missed some ND signs before, but this is so frighteningly rapid. And it seems old for regression, from my frantic googling. I can’t bear to keep watching and wondering when or if it will stop? What if she keeps getting worse? Is it how it happens?

I think once you're looking for it, it's hard not to see everything through that lens. Perhaps you could visit your GP to rule out anything medical? Or perhaps something is causing her to be overwhelmed? Something happening at nursery, or something sensory that she can't articulate? And, I hate to mention things like this, but of course, any sort of neglect or abuse has to be ruled out when diagnosing ASD. So if there is any situation that something could have happened to her that you're not aware of, that might be something to rule out (sorry, I don't want to cause you distress by saying that, only you can really say if this is a pattern of behaviour over time, or a sudden reaction to trauma).

I just saw this on a Facebook group I'm in. I just thought I'd share it with you, as it's exactly like my daughter and sounds like yours too.

Thanks, that does sound like her. What was the answer?

Has your daughter done it more and more as she’s got older?

No, I wouldn't say she has, but she does seem to need to do it every day. She often seems quite relieved/happy when she gets the chance to do it. I didn't read the replies, but I'd imagine they'll say that it's something he needs to do, to regulate himself, and to maybe ask the school to give him some time in a private space each day, where he can do that. That's what my niece's school did for her. She was allowed out of lessons to pace about if she was getting anxious/stressed. She's applying for Oxbridge right now (can't remember which), to study languages. She has taught herself ALevel Russian for an extra A Level on the side. I worry so much about my kids, so it helps to remember that it will probably all be fine in the end.

Your niece sounds amazing, what an example to aspire to.

Hi @PurpleOrchid42 the GP and health visitor have referred my daughter to the community paediatrician. Any tips on what to expect, please?

I've actually no idea, as we didn't seek a diagnosis until she started school, at which point she was nearly 5 and so the GP advised to wait until she was 5 and refer to CAMHS for diagnosis, as the paediatric triage wouldn't take it on this close to her 5th birthday. So we've recently been told by CAMHS that they believe she needs assessment for ASD and she's on the waiting list, which they said will be approximately 12 months. 🫠 At the same time the school has applied for an EHCP, though she's coping so well this year, I don't think she'll get it.

I think it might be quicker going directly through a paediatrician, so fingers crossed you'll only be waiting a few months to get some answers!

How are things now? Has anything changed? My youngest (26 months) seems to be getting more into the fantasy stimming thing (I have no accurate word to describe it)! 🙄 I'm getting better at accepting it I think, but this has been going on for over a year now (the acceptance that my eldest is autistic) and it's still really hard, every day.

Thanks for getting back to me.

My daughter has actually been a bit more ‘present’ over the last week or so, including when she met the health visitor, which has been nice, but the fantasy world/running up and down is definitely still a big thing and maybe it’s just that I’m getting more used to it. I guess it’s impossible for me to sustain that high level of anxiety.

I do find myself wondering about every little thing she does (some of which I’m sure is just normal three year old stuff). She says ‘her’ not ‘she’, is that a sign? She repeats things I say, is that sign? Etc etc.

I’ve realised that I draw a distinction between perceived ‘levels’ of autism, which is probably really ignorant and insulting, but I find myself thinking “as long as she can cope at mainstream school and has some friends, that’ll be ok.” Of course I have no idea at this stage what she’ll turn out to be like, and I’ll love her regardless. I guess it’s just my brain trying to cope with it, figure out a future that doesn’t look too scary.

Have you ever been tempted to go private? I guess it sounds like there’s not much advantage if your daughter is coping well.

Getting pronouns mixed up is definitely a characteristic, as is echolalia. I'm definitely the same with regards to levels, I'm so thankful that my eldest can attend mainstream, and it's a constant worry, wondering if my youngest will also manage it. I also wonder about things like 'will they ever live independently' etc. definitely even more to worry about than with NT kids!

Have you read any books or websites you found helpful?

OP- do you mind me asking how things are going with your daughter? And did you find any useful resources? X

@scaredandspiralling
Hi , how are things now with DD? X

Hi @jessiejojo and @SL22

Things are a lot calmer, thanks. My daughter is now 5 and just started school. She is on the waiting list for an ASD assessment but her scores on paper come back as ‘moderate’ and generally she’s doing pretty well.

After the really dramatic regression period (when I first posted), she seemed to stabilise and things slowly got easier - for about 9-12 months I’d say that she was regaining some of the ground she’d lost. And we, as a family, slowly got our heads around it too, and probably adapted quite a lot in terms of our expectations and demands on her.

She’s definitely quirky and has some social challenges, and her speech is probably a bit behind most of her peers in terms of clarity and grammar, but she’s funny, happy and has friends, and is really quite confident now. She’s come on a lot in the last six months, and can ride a bike, recognise all her letters, is happy to go swimming (with armbands), eats more foods, and enjoys parties and busy places again. She sometimes zones out but she doesn’t really run back and forth very much any more.

I still have a lot of fear and uncertainty over how she’ll cope with school and what the future holds, but I’m learning to celebrate the wins and there are plenty of those.

@scaredandspiralling what a wonderful update, thank you so much. It sounds as though your daughter is thriving, by any measure. I am so thrilled to hear this. My child had a regression over summer which led me to your post and this gives me comfort and hope. I really hope that they will be able to enjoy parties and busy spaces as they used to again and that they will be able to make friends at school (they started last week). Worry that they might struggle socially and be isolated/unhappy is the biggest worry for me. You sound like an amazing mum and I am sure that your daughter will continue to thrive. It sounds like she has great things going on with the parties and swimming ❤️

Hi @jessiejojo, I’m so sorry that you are going through this. It’s utterly terrifying and I know that all-consuming worry. I think the regression aspect is the most horrible - you fear you won’t get them back. Is this a new development for your child?

Key for me has been realising that it’s ok if they don’t like parties or have friendships in the way that I consider ‘normal’, as long as they are happy, or at least not unhappy. I had to let go of a lot of my own expectations of what I thought she should be doing/enjoying (it’s a work in progress), and in fact she does like a lot of those typical things again, at least some of the time. But also my daughter needs time by herself to regulate, and if she’s feeling overwhelmed, she needs no demands on her and a lot of autonomy. At first I tried chivvying her along to do usual things and expose her to busy places, etc, but that was definitely counterproductive.

I’m afraid I haven’t really found any amazing resources, but I follow a lot of autism parenting type accounts on instagram and do find that helpful.

@scaredandspiralling thanks so much for the sage advice. Yes the regression was new for my child- suddenly struggling in contexts which were absolutely fine for them before. I also think their social skills have declined. I wasn't sure if it was because of a house change/change of nursery but they just started school (last week) and I think they are struggling socially. Just before they turned 4 (at a different nursery) they had solid friendships and seemed very socially at ease, including conversations. The worry really is all consuming ❤️ Did you try to help build your daughter's social skills with peers at all? Or maybe not necessary? I hope that she is enjoying school.

@jessiejojo I didn’t try and build her social skills, no. She was at nursery five days a week so outside of that (which was a necessity) we tried very hard to reduce demands on her. Sometimes we’d go to a party, when she seemed keen, but then leave after half an hour when it got too much for her. But a lot of time she just didn’t want to go at all and we made our excuses. Slowly, slowly, she built back up to wanting play dates / parties, but when she gets tired and overwhelmed that’s the first demand we have to drop.

@scaredandspiralling do you mind me asking if she is able to initiate conversations and join in play? I am worried that my child can't do this any more. They seem to be very nervous around 'people I don't know'- including kids. I am so worried :( It is wonderful that your daughter is able to enjoy play dates and parties now. ❤️ Even if she has to drop it sometimes, at least she can do it.

@jessiejojo she can join in play and initiate conversation, although sometimes her chat is a bit weird - telling people all about her dog, or some random thing that she likes, without any context. It’s like she wants to make a connection but doesn’t quite know how. So far other kids don’t seem to mind.

Do you think your child might be overwhelmed by school, so their anxiety is heightened? It is a huge change for them, so it might worsen their ability to cope while they settle.

@scaredandspiralling I think it's amazing that she is initiating conversations. I think most 4-5 year olds' chat is a bit random anyway. I don't yet have a handle on what is going on as my child was previously very sociable and happy (at their old nursery) but when we moved house and nursery they didn't make the same connections- they started well but then it went wrong somehow. So I was nervous about school and at a play date today I could see that their social skills were not great. They are definitely anxious about meeting new people and before school kept saying they were nervous about meeting people they didn't know and worried in case the other kids didn't like them 💔