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.

Hi, how are you feeling today? Any changes? The way you described your daughter, running backwards and forwards talking out loud, describing an imaginary scenario... my daughter, now 5, does the exact same thing. She is currently on the pathway to ASD and possibly ADHD diagnosis with CAMHS. What you are describing, the sudden change in behaviour, can be an autistic regression. So if your daughter is autistic, she can have a regression at any time, perhaps due to stress (often caused by things that wouldn't bother a neurotypical person), or can just happen as part of her development. My youngest is only 25 months, and she seemed to have a sudden regression about 3 months ago. I was heartbroken, as I'd hoped she wasn't autistic, but I have accepted it now (well, some days anyway). It is a devastating thing to happen, so I completely understand your distress. I think you need to speak to your GP and explain what's happened, and that you suspect neurodivergence, and the GP can refer her to a paediatrician, if that's what you want at this time.

Thank you for your message @PurpleOrchid42

I definitely do suspect neurodivergence. I have an older child and I can clearly see the difference from ‘typical’ role play and running around. I’m finding it very hard. I just don’t want life to be difficult for her.

Does your elder daughter seem to tune in and out of engaging with you? Or is she constantly in her own world?

And sorry for my ignorance @PurpleOrchid42 but are the regressions always permanent? I had heard about autistic regressions at a younger age because I gather that’s why people often erroneously blame the MMR vaccine. But at 3.5 I thought she was just already who she is.

My eldest can easily tune in and out of her 'game' I suppose, but she doesn't want to be derailed once she's doing it. I guess what I think she's doing is a sort of decompression. It's like she needs some time each day to run and leap about, talking out loud these sort of fantasy scenarios. It's not something that anyone could easily join in with, it's basically impossible. She'll sometimes ask me to to join in, but then all she actually wants me to do is a say a certain phrase at a certain time, and that's the extent of it. Most of the time though, she doesn't want anyone to join in, she just wants to rush up and down acting it out (mostly just talking it out).

There is so much worry involved in having a ND child. I can't tell you how much of the last 3.5 years I've spent googling, comparing my kids to other kids, reading, completing online quizzes, discussing things on Facebook groups and just wishing, wishing, wishing that I could see into the future and know that everything is going to be alright. And by that I mean, she's happy, and we have a great relationships with her. That's all I want. It can be really hard at times.

As far as I'm aware, they can happen at any age, but in older children/adults this might look like autistic burnout. They definitely can regain some of the skills they may have lost, if not all. Certainly for toddlers that have a regressive ion, it's not that they weren't autistic before, but now they are, it's that, for whatever reason, it wasn't as obvious previously. So for your daughter, she may just have discovered a new strategy for decompressing, after socialising, which she may find much more challenging and tiring than an NT child. Perhaps she is at an age where her peers' social communication is changing, and it's getting harder for her.

@PurpleOrchid42 it sounds very similar to my daughter. I’m so sorry you’re experiencing this worry too.

Is your daughter at school?

And sorry for all these questions @PurpleOrchid42, it just sounds so alike (while accepting that no two people are really alike) - does your daughter engage with you and others when she’s not decompressing like this? Or is she often in her own world?

Yes, she's in year 1. She struggled a lot in reception, and that's how/why we got the CAMHS referral, though I'd suspected she may be autistic since she was 2. She's absolutely wonderful, but she's just different, in so many ways. She certainly beats her own path through this world! Does your daughter attend by childcare? Have they mentioned anything?

Yes, she does engage with us, she's very loving and always wants to be with us, never on her own. Though I think it's probably quite obvious that she's a bit different, for anyone that talks to her. She's just very sort of 'off the wall', with her humour and the things she says. It's really hard to explain, because it's her entire personality. She's very intelligent, and she has an incredible memory. But she's super anxious and extremely stubborn and has load of sensory issues.

Yes @PurpleOrchid42 she’s at nursery four days a week. They have noticed these new behaviours, but prior to this last month or so they said she was starting to engage with other children more and take part. They hadn’t raised any concerns and only agreed about the new behaviours because I raised it. It’s a very small, very caring nursery and I do trust them but I wonder if she’s just quiet and self-contained a lot of the time.

I just can’t believe the sudden change. She’s always been individual but this is so different.

What’s really breaking my heart is that she’s not really interested in her brother any more, when she used to adore playing with him. He can’t understand it.

I found checklist like this quite helpful: www.staffordshire.gov.uk/Education/Access-to-learning/Graduated-response-toolkit/School-toolkit/Communication-and-interaction/Social-communication-autism/SEN-support-in-school/Autism-in-Girls-checklist.pdf

Thanks, that is helpful and she definitely ticks some boxes. Bad eater, terrible sleeper. And the lack of sleep is not helping me remain calm and keep perspective.

Oh that's so hard on her brother. Maybe it's because she's finding all the socialising at nursery tiring, and therefore needs more alone time when she's at home? My niece is also autistic, she's 18 now, and she absolutely needs quite a lot of alone time whenever she has socialised or been somewhere new.

When did your daughter start the running around, @PurpleOrchid42?

Do you think it would be beneficial to get her assessed at this age?

I’m trying to understand what kind of support she might benefit from, if any, at the moment.

I definitely think it's beneficial to get the process started as soon as you suspect. It literally takes years on the NHS, and once they're over the age of 5, you have to go via CAMHS rather than be referred to a paediatrician by your GP. I expect the waiting list to see a paediatrician is shorter!

I think the main thing is that she'll get the support she needs when she attends school. They'll understand her strengths and weaknesses and she may qualify for an EHCP, which is means the school will receive funding that can only be spent on her, so she might get a dedicated support assistant, for example. My day is currently being assessed for this. She is super bright, but has a very low attention span, unless she's particularly interested in something. She also needs a lot of strategies to be employed to actually get her to do anything she doesn't want to do. She's classic Asperger's I guess, though they no longer call it that.

I guess my daughter sort of started it when she was 2, but it only really became very noticeable when she was about 4.

@PurpleOrchid42 Thank you so much for answering all my questions. I’m catastrophising and mourning and god knows what else.

(I know I can’t diagnose her on the basis of googling/Mumsnet but it feels like I’m suddenly seeing so much I was blind to before).

It's so, so hard. I'm still very much going through the 7 stages of grief, and it was a real blow to find that my second child is also autistic. It's just all the fear of what's to come, because you just don't know how it's going to pan out. And also just grieving the experience you thought you were going to have, I guess. I think it gets to a point where it's just obvious, especially once they start school, and there's a lot more expected of them.

I have a saying now: 'a mother knows'. Because you do. You're the one who really pays attention to all the small things.

Does your second daughter show similar signs or different?

It’s seeing her alongside her nursery ‘friends’, and her younger cousin, and seeing the differences. She’s just seems so distracted and distant by comparison.

It's hard to say, because I think I was sort of blind to it early on, with my first. But the major indicator with my second is that she has quite poor eye contact. Like, she will make eye contact, but she quite often doesn't at times you'd expect an NT person to make eye contact. So, she'll be asking for something, but she doesn't look at me. And it happens often enough, for it to be a pattern of behaviour. Or I'll be talking to her, really trying to engage her in conversation, and she just will not look at me. She'll answer if I ask a question; but other than that, it appears as though she's not listening. Other times she'll look at me just fine, but it's often enough for it to feel like something really isn't right. She also doesn't say hello or goodbye without prompting, and doesn't really show an interest in children, other than her sister. And she also is overly interested in/ gets fixated on strange things, like there was a cement mixer parked opposite our house once, so now she likes to name her toys 'cement mixer' or she called another toy 'follow my leader cement mixer' and another 'ice mixer'?? It's just so bizarre. Even though her eye contact isn't great, she listens to every word we say when she's in the same room, and seems to be very sharp. I worry most about her, because I think if your eye contact isn't good, people just think you aren't interested. She's also very affectionate, and seems to have a sense of humour, as in if she knows something makes us laugh, she'll do it on purpose to get a laugh. Another big sign for me is that she doesn't usually smile back, if I smile at her.

Yes, that's how I'd describe my youngest!