No one is telling me the truth about DD - potential SEN

[Oldtimesofmine]

I have some worries about DD (5 yo - in Reception). Since she was about 3 yo she's been flapping her hands and making strange grimaces. We thought this is just a little quirk that she'll grow out of, however it's getting worse.

Her nurseries (went private in lockdown, then state pre-school) never mentioned anything which made me think she didn't display these behaviours outside home.

She then started her state school and again no one mentioned anything concerning. She has been doing very well academically and is very compliant at school. For various reasons that are not relevant yo this post, we decided to try a private school.

When she went for her taster day at the private prep they mentioned her hand flapping, grimaces and her fear of the toilet flusher as they suspected some SEN that they were not able to provide support with. This was the first time a school has given me some sort of honest feedback.

Fast forward a few months, she's in her private prep which she absolutely loves and I appreciate everything they do for her to make her transition very smooth and fun. However her teacher (who is lovely, warm and positive) is not willing to tell me much about this hand flapping or grimaces or any concerning behaviours. She is saying she does it 'sometimes' but snaps out of it as soon as they call her name. I know they all obviously see it but because she's not struggling with school or friendships they basically don't really want to talk about it.

I've noticed other things in her behaviour at home and I'm trying to keep a diary about everything in case we need to go for a diagnosis at some point but I find it really hand to get an honest feedback from anyone (she also does gymnastics and drama outside school) and they always say oh, she's fine! She's great!

When she left her state school her previous teacher said oh yeah, she flaps her hands, she covers her ears sometimes as the classroom is terribly noisy but never said anything for 2 terms.

Is this normal in the UK? How do you push for feedback and push through this sugar coating as don't think it helps anyone?

A very large proportion of young children have sensory sensitivities and hand flapping and gesticulation are common strategies children use to manage the disorientation sensory overload causes them. Estimates vary because it isn't a defined syndrome so studies are measuring different things but anything from 10-25% of five year olds are going to show signs of sensory sensitivity.

By itself this does not indicate SEN. Sensory sensitivity and a vulnerability to sensory overload is typical in autistic spectrum conditions and common in other neurodiverse conditions but in those cases you will see other behaviours too

If she simply finds loud noises intense and currently manages that with hand flapping it is likely to become less severe over time although she may always be sensitive to sound (as many adults are). If her communication skills seem atypical for her age especially if she is delayed in language development or her language use is rather unusual, her style of play is atypical and she is having difficulties playing with rather alongside other children there might be more to explore. Honestly she sounds quite typical for her age. If you speak to other parents you may find some of her peers are very picky about food textures, others can't cope with bright lights and others will only wear clothes that feel just right. All quite typical quirks for five yr olds.

I think it's very normal anywhere to get this response when a child is well behaved and not struggling, but shows signs of SEN. A lot of girls especially fly under the radar. My DD is quite, smart, great grades, follows the rules at school. At home was a different story. We were lucky in that her teacher had experience working with Autistic children and understood masking and agreed with me when talking about her behaviour that it would be good to get an assessment done to find out for sure. She felt it was possible my DD was masking and not actually coping with school.

I'd ask for a meeting to speak to the teacher, write down your concerns, what you've noticed when others have noticed and so on and go through that with her. Ask her if she's noticed anything, she may well notice more if she's on the lookout for it. I was so used to DS being DS that I didn't notice how often he stims until I was specifically watching for it. His Autism was a lot easier to see then DDs.

I felt very apprehensive speaking to DDs teacher. I was surprised she didn't dismiss my concerns. You might not get a positive response, you might get dismissed. You can seek a private diagnosis, but that can be harder to get if schools saying there's no possibility she ND.

Thank you very much for your responses. It makes a lot of sense that a state school in particular would not bring it up if she's not struggling. But I do notice other atypical behaviours and odd use of language that are becoming more obvious.

This could be sensory processing disorder and at 5 developmentaly this can all be normal, which can explain the hesitation of her carers and teachers. I was writing from the point of if she is Autistic. It might be good for a few months to write down anything you notice, like eye contact or does she point? Socially does her behaviour playing with other kids seem age appropriate. Does she copy others speech or only play imaginatively when another kid is scaffolding the play for her. Does she play in a repetitive or non typical way? DS has hundreds of little toys he just lines up and never plays with for example. You can find MChat and Ages and Stages questionnaire online, these can be useful in seeing if there's something that needs further investigation.

Odd use of language in what way? Odd syntax or repetition of words just said? Echolalia, the meaningless repitition of words, doesn't mean Autism necessarily but is more common in Autistic kids. My DD it didn't even occur to me till she was 7, it took another year to feel confident that she was Autistic. My boys it was much clearer.

I will say start writing things down, this can help give you clarity either way and will be useful if you do need to seek an Autism assessment.

Thank you so much for your comment.

She's always had great eye contact, she's very lively with a big laugh, loves people, always wants to have friends around, not very good at playing alone.

She has lots of friends and is very liked. However when she meets her friends, she doesn't necessarily interact with them all the time. Half the time she interacts with them then runs off and talks to herself, basically plays alongside her friends. It's hard to describe and I'm not sure how typical or atypical this behaviour is. I do feel she's in her own little world more than I'd expect her to.

She never has tantrums or meltdowns, she doesn't line up, no sensory issues about clothes.

She does get obsessed about different little things but moves on after a while, for instance a particular show or a book.

I honestly don't know how to describe it: she does repeat the same phrase over and over again for instance. She was showing her friend the other day how to cross a little stream in a 'different' way to make the crossing more challenging. And she kept saying 'look, this way is more challenging' and she repeated and repeated about 5, 6 times 'this is more challenging' while jumping and running around in her own little world. I had to make her aware she said it enough times.

And talks to herself a lot while supossedly playing with her friends.

However when she meets her friends, she doesn't necessarily interact with them all the time. Half the time she interacts with them then runs off and talks to herself, basically plays alongside her friends. It's hard to describe and I'm not sure how typical or atypical this behaviour is. I do feel she's in her own little world more than I'd expect her to.
It sounds like she's using parallel play and solitary play more than would be expected at this age. At 5 it could mean something or nothing. She might be developing her social skills a little slower. If she's still doing this at close to 6 it would be something I'd want to look into, it could be a red flag for possible Autism or something like social communication disorder.

Yes, that's a good idea.

All those social and communication issues you mention, all possibly point towards Autism. She's on the border developmentally of what would be considered within the normal range. They'd certainly expect less parallel play at this age and my youngest when he was diagnosed they said the talking to himself and narrating his play were not developmentaly appropriate behaviours at 5.5. It's what makes it so hard at this age, you have suspicions and feelings and you're waiting to see if these behaviours change with age or not.

What puzzles me is she is making friends all the time. She approaches children in playgrounds, same at school. And has days when she she interacts a lot and days when she's mostly in her own little world. This is something quite recent, she was a lot more interactive when she was younger. A lot of these atypical behaviours have become obvious since she started her state school.

Yes, it's really hard. We had literally no suspicions before she started school. She was very social, very happy, lively, great communication, confident. I keep thinking what happened when she started school.

Can I ask you at what age were your DCs eventually diagnosed? And what do you mean by narrating his play? And what other behaviours pointed you towards a diagnosis?

Oh OP, she sounds exactly like me as a child. "A pleasure to teach", "compliant", "always follows instructions". Then at home when the mask came off I would exhibit more of the unusual more "typically SEN" behaviours such as stimming etc.
I managed to fly under the radar until I started university and broke down with the lack of structure and not constantly being made to follow instructions (for many autistic people, following instructions is something soothing and comes easy).
She may grow out of it or it may resurface later in life like mine did (as this is entirely anecdotal experience). However, remember she is only four, and many four year olds do flap their hands etc. I wouldnt worry about her unless the behaviours continue into later primary/secondary and begin to cause issues. If there's no issues, I would leave her be as long as she's happy and enjoying school ❤️

Yes schools will not bring it up if it is not causing a problem. You can request a meeting with senco. Explain your concerns and ask them to observe her.

narrating his play talking about what he's doing like a narrator in a play or book.

6 & 5 for the boys. DD was diagnosed at 9. DD got more obvious with age, I can see now the social differences between how she interacts and how her friends do. She started having trouble with friendships at around 7.5. She can no longer mimic the complexity of social relationships at 10 and is struggling with friendships.

@EliflurtleTripanInfinite Thank you, hope all your DCs are getting the right support and are thriving.

Nobody has ever picked DDs quirks up at school. Not until she experienced burnt out last Christmas and I got her diagnosed. They pick up on things now they know what to look for in her though.

DD is an only child so lots of her quirks at home I put down to that and socially not having much unstructured free time with other children as has no cousins etc. Although I worked with teens with ASD and we have a family history so I kept an eye on it.

She is your stereotypical ASD girl. Masks massively and when she started Secondary school struggled significantly with the school environment. I had previously asked for feedback from her Primary and Secondary over areas I was concerned about and was told she was quiet, very bright, compliant but absolutely fine and a pleasure to teach. I persued a private ASD diagnosis and the cognitive testing flagged up she was highly gifted in several areas so her ability had masked her disability until she got to high school and couldn't cope and burnt out.

DD can make eye contact, but says mostly she looks at the bridge of the nose.
Dislike of loud noises like hand dryers as a child is now completely intolerable and she takes noise cancelling headphones with her everywhere now. She feels like her noise tolerance has decreased massively over the last few months.

Compliant - give her a rule she'll follow it, makes for very easy parenting.

Excels at all logic based subjects, likes documentaries and non fiction. Does not see the point in any subject where you have to analyse what someone else means, does not like fiction or many TV or films.

Never really played with her toys as a child in a freestyle way, would recreate (perfectly) books and TV shows with small world toys.

DD has intense interests for 6 months at a time and flits between different things.

She doesn't really have very, very restricted routines but does like to maintain sameness.

dd likes a warning and to be able to prepare mentally for what we will be doing, whether that's a trip to the cinema or a weekend a way. She has to be part of the planning and needs a travel day without anything else added if going away from home.

I never noticed her hand flapping when younger, but do see it occasionally now and she wrings her hands or flicks a hairband on her wrist when stressed.

In my experience teachers at schools aren't always the most clued up on Sen conditions. (I know there will be exceptions. This is just my experience).

We have had to battle all the way with getting diagnosis, things out into place at school etc. my son is a bright, very well behaved boy who causes no trouble at school. I think in this situation the teachers don't really mansion anything. If the child is disruptive in any way then things may be different.

I would recommend an honest chat with the teachers and maybe a visit to the gp.

I really don’t see ‘SEN’ here, just a tic. If that’s the only ‘symptom’ then what makes you think SEN?

The reality is that everything you say could be an indicator for a neurodiverse disorder like autism, but equally every single one could be normal development of a typical child. Whilst early diagnosis is an advantage, equally you have to consider that most children with the profile you describe will not have autism, and the fact she doesn't have tantrums is a good sign that it's less likely. (I have an autistic daughter, she didn't speak until 4 and had awful tantrums)

The thing is small children are inherently odd. It’s very normal for them to have obsessions (wanting the same Tv programme over and over), repeating words they consider fancy/impressive that they’ve just learned, be fussy about food. I feel we’ve lost sight of this like @gogohmm says, and now see normal child behaviour as indicative of special needs. If your child is happy and thriving at school, what is probably a tic and normal kiddy behaviour wouldn’t worry me. Once you start ‘looking’ for behaviour because you’ve decided something is wrong, you’ll usually find something.

Dd was 2.5 at diagnosis, she's never had friends really, playing alongside at school (she considered them friends) by secondary she was in a support programme in mainstream school where she went at breaks playing chess with similar children or doing extra schoolwork (out of choice, sometimes she did marketing stuff for the school, she loved helping in the school office). She's adult now and even has a long term partner, met through gaming but no female friends

I think you just need to wait and see and note down anything you think is unusual and start saving for if she needs a dignosis in the future.

If it's not causing an issue in the classroom the school will not suggest going for a diagnosis as the waiting list is long and it is very expensive, there will be lots and lots of children with extremely challenging behaviours waiting to be diagnosed that will take priority.

It is normal for children with (low needs) ASD (which is what it sounds you are concerned about more than other SEN) to show more signs at transition points nursery>primary school>secondary school because the coping skills they have used previously no longer work, secondary schools are bigger, less structured and hormones are at play.

If your DD turns out to be ASD like my daughter I'm not even sure what adjustments her Primary school could have made for her as she got on fine and had lots of great opportunities that she might not have gotten if people had heard that she was autistic as that comes with stigma still. However, going to High School she has needed adjustments to cope with the school environment such as toilet pass, quiet room for testing, 2 minute early pass to move through the school before the crowds. Academically there isn't a huge amount to be done other than to avoid/explain the use of metaphors and she prefers copying from. Infront of her than off the board so gets the PowerPoint printed for her now.