Atypical ASD?

[Mimithecat]

Posting here to find out if anyone can relate to this as it's keeping me awake at night. Sorry it's a long post.

DD (5) in Reception is generally a very happy child. She is social, adapted very well to her nurseries, started at age 2 and didn't need any settling. Same with school. Loves learning (top reading group in her class, having not read before starting school), very well behaved, very kind, empathetic etc.

She had a very typical development, hit all the milestones on time and was quite an early talker with very clear speech and great vocabulary. Potty trained very quickly at 2.5 yo. Great eye contact, she was smiling and waving at strangers since she was a baby.

She never meltdowns (last meltdown was probably when she was just about 2 yo), just the odd emotional outburst which lasts a few mins, then she is happy again.

She doesn't seem rigid in her behaviour, usually when we have playdates she is always the easy going one and we tend to follow the other child's lead.

However, since the age of about 3 she is flapping her hands a lot, usually when she's excited or thinks about something, followed by strange grimaces. I thought she was only doing this at home, turns out she is doing it at school a lot and the teachers are not sure what it is.

Another thing is she is sensitive to noises, but not all noises. Usually toilet related, toilet flusher, sometimes hand drier. This again started around the age of 3 and is getting worse. She is fine in crowded places, noisy soft plays.

She is a bit in her own little world with an amazing imagination and all sorts of stories come out and her friends look at her like she is a bit odd. She talks obsessively about her cat (occasionally talking like a cat) and she does tend to get obsessive about things for a while...then she moves on.

We are moving her to a private prep school (less children and less noise in the class room), however on her taster day the school has picked up on these unusual behaviours (hand flapping, covering her ears in the toilet, talking like a cat). I'm quite nervous now about how she is going to 'present' herself at the new school and whether we need to look into some sort of support?!

I should mention I did speak to a pediatrician about it (informally), someone we know and she knows DD and she said because she's not struggling in general, she seems to make friends, she is learning, she is adjusting well to new situations, she doesn't need special support, then pursuing a diagnosis will not achieve anything.

But I'm a bit worried about her little obsessions and her hand flapping and that she'll get picked on when she older.

Can anyone relate to this? I've read a few thread on atypical ASD but none of the kids seems to be similar to DD, they tend to have more obvious ASD traits.

Have a look at signs of ASD in girls. My DD is on the assessment pathway and some ( though not all) of that resonates. The social issues only really become apparent in year 2.

Thank you for your reply. Can I ask you if you don't mind what prompted you to go for a diagnosis and whether you had suspicions earlier?

In our case it was because the meltdowns didn't stop after toddler hood and school suggested it when she had one at school ( after 2 years of saying she was just strong willed, but she did manage to mask well in early years plus these were the Covid years). I always had slight suspicions but I'm autistic myself so may have been particularly sensitive to it.

Thank you for sharing. I hope your DD gets the support she needs x

You say DD doesn’t need special support but also say DD has sensory needs and you are moving her to a prep school and mention smaller, quieter classes.

Not all independent schools are supportive of DC with SEN and when they are often charge extra so if you do suspect DD has ASD should have a frank conversation with the school.

If you think ASD is a possibility you should seek assessment. If for no other reason than aiding DD’s understanding of herself and others’ understanding of her.

Well...it's a bit more complicated. When she started the state school she was very confident, she couldn't wait to start, just like she was at her previous nurseries. We were very confident she'd be flying through school with absolutely no issues. None of her previous teachers brought anything up about her 'quircks' so we weren't aware of anything. They all said she'll do amazing wherever she goes as she was always enthusiastic about everything, learned her routines very quickly, never got into trouble with anyone and so on.

Back in Oct I had parents evening at school and the same, the teacher said she is doing great, absolutely no issues. However DD's confidence started dipping, she told me there are a few horrid kids in her class who spit and hit plus the teachers are very harsh, so for the first time she started telling me she didn't want to go to school. Plus I didn't feel she was progressing much with her reading at that point, so in Dec we decided to look into a private school. I love the private prep, it's very quiet, amazing facilities and I like their curriculum, I can see DD thriving there academically.

In Dec I asked her teacher if she thought DD was ok, if she was engaging, teacher said she is very very quiet (which didn't sound like DD). She is well behaved but would normally put her hand up, would be engaging. I asked DD and she said she didn't like her teachers, they put her down a lot.

A month later she had a taster day at the private prep and this was the first time someone pointed out to me her unusual behaviours. It was a bit of a shock as we thought she was like that only at home.
The private school indeed doesn't offer ASD support so they were trying to find out if we were perhaps 'hiding' something. They did offer her a place because they though she had potential and was very happy and confident, despite her quirks.

Since her taster day for some reason her confidence has trippled, her reading clicked and she is in the top reading group, she connected better with the teachers as well, I wonder if they mellowed knowing she's leaving, don't know.

But I do worry about her quirks now and whether she'll fit in the new school. But we are willing to try and see.

The girls in her new class loved DD from what DD and her new teacher are saying, so I'm hoping she'll be in a much better place.

It’s really not more complicated than that. DD does need additional support. And that’s fine, I was just pointing out you saying DD doesn’t need special support doesn’t fit with the rest of your posts.

I should add that when I told her current teacher that we are moving her in the summer term (beginning of March) I asked her if DD finds the class room noisy or if she had any concerns, she said yes, she covers her ears sometimes, she flaps her hands and so on. Something that's never been mentioned to me before. I used my instinct when deciding to move her.

The state schools are overwhelmed with more obvious SEN so I think this was not on their radar.

I tried to explain how we got to the decision of moving her. Plus she didn't need extra support in the classroom as such, she is learning, she is making friends and she's mostly happy. No special support was ever needed so far. But of course I'm worried it may impact her in the future.

Sensory needs require support.

No one ever mentioned to me that they thought she needed support. I wasn't even aware of her quirks in the classroom until a few weeks ago.

Of course I realise now she needs a bit of support and it's a good thing we are moving her to a quiet private school.

No one ever mentioned to me that they thought she needed support.

Unfortunately that’s often the case. If DD has sensory needs relating to autism it is likely she needs more sensory support than ‘just’ a quiet classroom.

Of course, but we don't know that yet. Will have to wait and see unfortunately. So far her learning or her social life have not been impacted. If there are any issues the private school will highlight them I'm absolutely sure. They only mentioned her covering her ears in the toilet, she hasn't done that in the classroom, like she does in the state school, so hopefully that's a positive thing.

Plus she is absolutely fine in noisy soft plays or crowded places. We do have a family friend with a DD same age and she clearly struggles with noise. They only book her SEND sessions at soft play and usually take her to quiet SEN friendly places.

DD gets bored when it's too quiet, so I'm a bit confused.

Support for sensory needs can be provided before an ASD assessment. There’s no need to wait.

I wouldn’t be so sure DD’s needs aren’t affecting her development. You say sometimes DD’s friends look at her like she is a bit odd and she talks obsessively about her cat so they could well be affecting her socially. It is also affecting her communication if she is struggling to put her hand up and ask/answer questions.

A busy, noise classroom is a different sensory environment to a noisy, busy place elsewhere such as soft play. They aren’t comparable. It’s not unusual for DC with sensory needs to have a complex profile, seeking sensory input in some areas and avoiding other sensory input.

My DD is very sensitive to noise when she's trying to concentrate ( I.e. at school) but absolutely loves soft play. Also she was fine with the free flow nature of nursery/reception but it all fell apart when the learning got more formal. I'm sure she would massively benefit from the smaller classes of a private school if I could afford it, but I couldn't take the risk of her having a meltdown and being kicked out ( her state school aren't perfect but are generally supportive and can't expel her just because they don't want to provide support)

Well what's atypical autism for a start because I've got two diagnosed with autism and they are like chalk and cheese 🤷‍♀️.
The one with classic autism doesn't do anything that people would think yep he's autistic (no hand flapping,not bothered about hand dryers, lives crowds and being the center of attention,no lining things up) but lots of rigid routines and dietary limitations.
The one that's high functioning has many many more subtle issues and needs but gets dismissed a lot by professionals because she is female and masks 🤷‍♀️.
Toilets are a nightmare to her,she has ocd and lines things up constantly.
She isn't social at all and has food issues.
So what's typical 🤷‍♀️

Yes, DC, doesn't mind lots of noise but is driven to distraction by silence plus the noise of breathing, typing etc.

Sorry, straying off topic, but not sure how private schools get to avoid providing any support to autistic pupils - they are under the same legal obligations to make reasonable adjustments?

Independent schools must make reasonable adjustments and comply with the Equality Act. They don’t have the same statutory duty under s.66 CAFA 2014 to make their ‘best endeavours’ to meet a pupil’s SEN. The statutory exclusion guidance doesn’t apply either, although they do need to have and follow a policy that is complaint with the Equality Act. And if wholly independent they can’t be forced to admit a pupil with an EHCP.

Sadly, many aren’t supportive, and where they are charge extra.

That is truly grim.

Look up motor stereotypies or complex motor stereotypies.
But this would only explain repetitive movements (hand flapping)

She sounds a lot like my daughter who is on the autism assessment "pathway". She is now nearly 7 and still loves school both academically and socially, reads above her age expectation etc. however she struggles with non-literal language, flaps her hands and makes unusual noises and is obsessive about animals (also pretends to be a cat! Apparently v common in autistic girls!). She has a good group of friends but I notice that she has formulaic conversations, she asks the same questions over and over and is inflexible in her play. She has "emotional outbursts" over small things but can usually calm down quite quickly. I didn't see them as a huge issue but school have put her in an emotional literacy support group which has been helping her. We realised this year how little she understands about her own emotions whereas I'd thought it was just other people's she struggled with.

Can I ask you if you had any signs before? Did you suspect anything when she was younger?

Your daughter sounds very similar to my 5 y/o who I assume is "typical" and nobody has suggested to the contrary. My girl is also quiet, kind, loves playing animals (particularly cats), is scared of hand dryers... She also has an unusual movement she does (which may / may not be directly related to a vision difference, depending on who you ask)...
She could be normal (just saying). ;-)

Sorry for the late reply, I missed this until now.

I didn't see any signs as a baby or toddler, and I am quite aware as have worked with autistic children.

She met all her milestones on the early side, was very confident and chatty at playgroups.

She started nursery at 3 and adjusted very well, although I actually see now that was quite unusual.. she immediately walked in on our first visit without so much as a wave, when she noticed me talking to staff a few minutes later she asked me why I was there, told me in no uncertain terms that "mums don't go to nursery" and to "go home!"

She has always had lots of friends and an amazing imagination, but as you say about your daughter, she says some unusual things and friends sometimes look at her like she's a bit odd.. I never know what she's going to say next and she doesn't have any sense of what's socially acceptable or any filter! 😳

I do worry about whether friends will be so accepting when she's slightly older..

Thank you for coming back. Can I ask you why did you decide to go down the diagnosis path?

DD is not inflexible in her play at all, in fact she is very flexible and gets on with most kids. Also, although she can the odd emotional outburst over little things at home (it only lasts a couple of mins), she never has them at school.