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Original poster

Is my child regressing? Heartbroken

108 replies

Genners · 03/12/2022 23:33

My (just turned) 5 yo DD used to be a bubbly child, very social, very excited about everything, confident and bright.

She started school in Sept and she was very excited to go every single day. Then slowly became more anxious and 3 months later her teacher is saying she is very quiet and very reluctant to put her hand up. She is learning and progressing so I don't think I have major concerns about that.

However, she does drama on Fridays after school. She's been doing that since she was 4. This term they worked towards a play which we watched yesterday. I had some concerns about her not really engaging, but hoped she'll at least do a bit of singing. Throughout the whole play, which lasted about 20 mins, she was 'away with the fairies', swinging from one leg to the other, stimming, flapping her hands and being completely disengaged from everything. I don't think she actually understood what was going on! I was hearthbroken watching her.

I should mention she has flapped her hands before (usually with excitement) and she does go into her own little world sometimes, but this was so completely shocking as no one there ever mentioned this to me and we are not allowed to watch until end of term. Seeing all the kids having a go (some one them are only 4) and her being completely off really worried me.

The other day I was passing by the school just after lunch and I saw her away from all the other kids, into her own little world running back and forth, mumbling something to herself. I talked to her through the gates just briefly and asked what was she doing, she couldn't answer, obviously she was surprised to see me.

I'm just worried sick. Anyone can relate to that? Is this a regression? Can ASD signs present later?

She hit all the milestones on time, she was an early talker, always social, always bubbly, always engaged.

I just don't know what to do and how to help her. I've decided to have a break from drama from next term, which is a shame as I got the impression she enjoyed it.

OP posts:
Phewthatwasclose · 04/12/2022 10:29

Oh OP, I know the feeling & the worry! But here is a positive story in case it helps - my daughter spent primary school very much 'in her own world', even had voices in her head occasionally (terrifying!) Occasional hand flapping, lots of hair twirling - I think it was mainly due to anxiety. She also spent years pretending to be a cat or a wolf 😳

Had friends and did activities but was always slightly on the side of things. We've got autism & ADD in the family so I was always on the lookout for that.

Something clicked in secondary and now (16) she's now got plenty of friends, great predicted GCSE grades, and is much more confident and 'present'. She'll always be a bit of a dreamer I think but very much within the realm of 'normal', she's just the 'quickly and creative' personality type.

BeautifulWar · 04/12/2022 10:31

Her teacher is a red flag for me. I had a terrifying teacher in class 1 (as it was then) and it really knocked my confidence.

Please give offer with the sanctimonious 'gave up my job to give her the best start' BS. We all do our best for our children, you're not special or superior.

maskersanonymous · 04/12/2022 11:08

It's very common indeed for children to be diagnosed with ASD all the way through childhood and into their teens. It is also incredibly important that if you do suspect it (and from everything you write it it should be considered) that you start the process of investigation as quickly as possible. It can take years to get to a diagnosis and the waiting lists are getting longer in many places, this is through the NHS and with the best people in private practice.

Your daughter is showing signs of being extremely stressed by school and already struggling and sometimes these situations can change dramatically - and negatively - rather quickly (e.g. school refusal etc. which can be hard to come back from). You really don't want to be waiting on assessments in a crisis.

Meanwhile you need to speak with the school and share your concerns, perhaps forcefully. If ASD is suspected they have an obligation to put in place support while you wait for investigations etc.

Interested in this thread?

Then you might like threads about these subjects:

5 year olds Families
Original poster
Genners · 04/12/2022 18:54

BeautifulWar · 04/12/2022 10:31

Her teacher is a red flag for me. I had a terrifying teacher in class 1 (as it was then) and it really knocked my confidence.

Please give offer with the sanctimonious 'gave up my job to give her the best start' BS. We all do our best for our children, you're not special or superior.

Gosh, I absolutely didn't mean to offend anyone with that comment. It was totally my choice, I thought I gave her the best start I could in my circumstances. We didn't have grandparents, the only nan lives abroad and is unwell. I had absolutely no help from anyone and I thought being a stay at home mum would be the best thing for us. I wish people didn't get offended so easily.

OP posts:
Original poster
Genners · 04/12/2022 21:33

Phewthatwasclose · 04/12/2022 10:29

Oh OP, I know the feeling & the worry! But here is a positive story in case it helps - my daughter spent primary school very much 'in her own world', even had voices in her head occasionally (terrifying!) Occasional hand flapping, lots of hair twirling - I think it was mainly due to anxiety. She also spent years pretending to be a cat or a wolf 😳

Had friends and did activities but was always slightly on the side of things. We've got autism & ADD in the family so I was always on the lookout for that.

Something clicked in secondary and now (16) she's now got plenty of friends, great predicted GCSE grades, and is much more confident and 'present'. She'll always be a bit of a dreamer I think but very much within the realm of 'normal', she's just the 'quickly and creative' personality type.

Thank you for sharing your story. So glad to hear your DD is doing well x

OP posts:
Original poster
Genners · 04/12/2022 21:35

FlounderingFruitcake · 04/12/2022 10:11

No advice on the stimming but it’s interesting that you say that the drama is on Fridays- we had to stop Friday PM clubs as DD was too tired and couldn’t handle it, and that’s with her school doing a 2.30pm finish on Fridays. She was doing a dance club but we’ve swapped to an alternative session on Saturday mornings and it’s been so much better!

Yes, I do think now the Friday night class, for 1.5 hrs is a bad idea. She's been doing it since pre-school and loved back then, but I think now with the full time school week is too much.

I've put her on a waiting list for a Sat class. Might wait for a while but I think she needs a rest.

OP posts:
Original poster
Genners · 04/12/2022 21:42

@MoanySloney Thank you for sharing that. I'm glad to hear he is doing well. It must be a huge relief getting a diagnosis.

OP posts:
Original poster
Genners · 04/12/2022 21:45

flashbac · 04/12/2022 10:26

Parents of autistic children are overrepresented on mumsnet. This might skew the responses you get OP. Let your daughter have a rest and drop the after school club first. See how she is.

We are cutting down on activities and let her have more free time, definitely.

OP posts:
Original poster
Genners · 04/12/2022 21:49

@GeekyDiva80 Sorry to hear that 😞. I hope you are both getting the support you need.

OP posts:
Coralpop · 04/12/2022 21:57

I have a video of DD in her foundation nativity, we thought it was funny for years - she was facing a different way to all the other children, not singing or doing the actions, off in her own world.

She's just been dx with autism now at 11, we had no clue at that age.

unlimiteddilutingjuice · 04/12/2022 21:58

She sounds a lot like my DS who is now diagnosed with ASD.
He found school confusing and overwelming and responded by retreating into his own world.
He's home educated now and, if you met him, you would probably not notice any autistic traits. He can interact normally, attend clubs and achieve well academically. But, in order to do that, he needs plenty of quiet time at home to decompress.
At school he was constanly sensory seeking, stimming and was badly behind. Being in a room with 29 neurotypical kids was too much for him.
It may be nothing, OP, but in your position, I would get her on the waiting list for assessment.

ReallyShouldBeDoingSomethingElse · 04/12/2022 22:03

I had a similar experience with DD at the end of her first term of Reception. I went to the end of term ballet show and she was just in her own little world and spent the half an hour pulling at her clothes and not engaging/keeping up. I was horrified as the teacher had given me no indication prior to this that there were any issues! We stopped ballet. I just couldn't see the point for DD at that time.

We're now a year down the line and I can still see social differences in DD compared to her peers but they're not marked enough to merit assessment just yet. School certainly don't think there are any issues. She's academically bright though and communicates well with adults and I think these things could go some way to disguising ASD/ADHD.

DD has become increasingly anxious since starting school. I'm about to change schools. Her current school seems to have a high proportion of kids with anxiety-related issues. Only time will tell as to whether things settle or whether some sort of intervention will be needed.

MilkToastHoney · 04/12/2022 22:06

Dontaskdontget · 04/12/2022 00:05

My DD had a huge regression when she started school. For a sensitive child (or anyone!) being shut in a room with 30 strangers and not allowed to leave is pretty traumatic. My DD also spent the entire nativity play leg swinging / poking the xmas tree and ignoring everyone else. Started having toilet problems too. The trith is, age 4-5 is way too you lng for full time school, very few countries do this.

She may just be taking time to settle, do raise it with the teacher. Or, the school may not be the best fit for her, do keep an eye out for anywhere quieter and smaller which may suit her better.

Ugh. The UK education system is shit and by the time they’re teenagers, 25% will have a mental health problem. The problem is not your daughter it’s the school system.

Exactly why I home educate.

Becute · 04/12/2022 22:18

Maybe she needs some sensory involvement to help with the flapping etc. My DC is complex needs and one of his need is sensory processing disorder. Sensory toys are good. Fidget toys or a fan or something that flaps to have when she is in situations like the show. Just to have if she feels she needs them for 5 minutes . Hope this helps xxx

gorkaandhelenforthewin · 04/12/2022 22:21

lookersnoopy · 04/12/2022 10:19

I think autism is a 'disability' manifested by society. I consider neurodiversity to be a normal part of being human and within a normal range of different human traits. It's the bloody system that causes problems for neurodiverse people, and then labels them as having a disorder. It's insulting.

Fortunately it's not really relevant what you 'think'

What this poster is referring to here is actually the social model of disability versus the medical model of disability. It is relevant what she 'thinks' because the medical model to which she objects is seriously outdated.

I agree with this poster completely.

waterrat · 04/12/2022 22:32

My 8 year old dd is autistic and also began to 'fall brhind ' at about 5 or 6..in some ways not all. I understand the difficult feelkngs when you see your child struggle but you need to start fighting for your child
If you cant get a moment with the teacher you need to push a lot harder. School is a big battle for neurodiverse children and i have had to constantly push...demanding meetings..making sure they know my concerns

You cant assume ever that a busy primary school teacher will notice a quiet child out of 32 if the difference with their peers is subtle

Original poster
Genners · 04/12/2022 22:38

waterrat · 04/12/2022 22:32

My 8 year old dd is autistic and also began to 'fall brhind ' at about 5 or 6..in some ways not all. I understand the difficult feelkngs when you see your child struggle but you need to start fighting for your child
If you cant get a moment with the teacher you need to push a lot harder. School is a big battle for neurodiverse children and i have had to constantly push...demanding meetings..making sure they know my concerns

You cant assume ever that a busy primary school teacher will notice a quiet child out of 32 if the difference with their peers is subtle

Thank you for your advice. Can I ask what areas did she fall behind in?

OP posts:
spiderontheceiling · 04/12/2022 22:40

Is she in the same drama society as she was at pre-school? And is the teacher the same? If so, is it possible to speak to her? The teacher will have seen your DD over a period of time and may have noticed some changes in her or may even say that the performance was just a funny day for her for some reason.

WillieEckerslyke · 04/12/2022 22:40

lookersnoopy · 04/12/2022 08:57

I don't think there is anything wrong with being heartbroken at the realisation your child may struggle their way through life tbh. No, autism isn't a death sentence but it is a disability which makes people lives much harder. Getting offended at OP who is clearly concerned for her child isn't at all helpful here.

Show quote history

I'm autistic and I agree with @lookersnoopy . It's understandable to be anxious about the possibility of something that might make life trickier for a child. We all want a smooth journey through life for our DC. OP has not used any inflammatory or disrespectful language as far as i have read. She is entitled to explore her worries.

Original poster
Genners · 04/12/2022 22:50

spiderontheceiling · 04/12/2022 22:40

Is she in the same drama society as she was at pre-school? And is the teacher the same? If so, is it possible to speak to her? The teacher will have seen your DD over a period of time and may have noticed some changes in her or may even say that the performance was just a funny day for her for some reason.

Funny enough, I have spoken to her teacher right before the class (they had a class for 1.5 hours then the play) and I asked her how was DD doing, whether she is engaging, she said she is doing fine, she does get a bit quiet but she thought it was because there were a few older kids in the performance so she might have been a bit overwhelmed. Other that that she said she is doing great.

So DD's behaviour was a shock to me.

I think the teacher had no clue and was being polite.

DD did mention a few times this term she didn't want to go to the class. She's been doing the class with the same school and same teachers since she was 4, she absolutely loved it until end of pre-school.

OP posts:
NK346f2849X127d8bca260 · 04/12/2022 22:55

My daughter was diagnosed with ASD this summer at the age of 18. Looking back there were signs from the age of 11, anxiety was bad and she struggled with the social interaction at secondary. She went to a very small primary which was very nurturing, so i guess that helped cover it.

Original poster
Genners · 04/12/2022 23:05

@Becute I never thought of this. I'll look into it.

OP posts:
Notsurenotquiteright · 04/12/2022 23:33

when I was in year 1 a boy was bullying me, he would run ahead of me when I was going to the toilet and turn out the light so I was too scared- I would wet myself.
I started losing focus in school, became less social and quite shy. I remember trying to hide from him by just been really quiet.
things improved for me when I moved schools.

if it’s a sudden change think about the environment and class mates- she might be getting bullied and is not sure how to verbalise it.

Creameggs223 · 04/12/2022 23:42

Girls can hide asd signs it's called masking my dd does it very well, it's more senses with her which i knew all along untill she hit school age, I met with the senco who already had part of the referral form filled in knowing we had the meeting and how she acts in school. Its completely different to at home, at home she only shows senses issue so nosie, smell, taste at school she doesn't like change goes off in her own little world doesn't engage and Is behind in every lesson. It's fine tho that's just who she is. No need to be heartbroken about it she might have a condition but she isn't the condition.

JubileeTrifle · 05/12/2022 08:34

I’d keep an eye on her and if things don’t change, then push for a diagnosis. The wait lists are massive, in some authorities it’s years, so best to get on the list.
DD didnt present until secondary, no sign at all. Girls mask very well.