Is my child regressing? Heartbroken

[Genners]

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.

@JubileeTrifle What were the signs in secondary school that prompted you to get a diagnosis? Looking back, do you think there were earlier signs that perhaps you missed?

Can I very social child have ASD?

Outside school/drama class DD is very social, she has lots of friends, she gets invited to b-day parties all the time. She seems to blend in quite well even if she doesn't know many people at the party. Doesn't seem to be bothered much by noisy places, although she does cover her ears if there are unusual, exceptional loud noises, but I think that's fair enough.

I know this is a general question and doesn't matter much in asd but does your dd sleep well? How is she falling asleep etc?

Also how is her communication with children compared to adults? My son prefers adults he doesn't know how to interact with a child very well only if they are into the same subjects as what he is into sport etc xxx

She sleeps really well once she falls asleep and never ales up but falling asleep is a a struggle. She doesn't settle very easily unless she is obviously very very tired.

...I meant never wakes up

I think if it was me I would definitely speak to a paediatrician about your concerns. I find writing down your worries and what you see will help too. Keep a diary while you are waiting to see them. Write everything down from what environment you see her flapping etc what the surroundings around her are like what she eats and how long it has taken to settle her at night. It will help as we often forget about these things when we are at appointments. Also it would be good if you could have a meeting with school to say your concerns at least you can see if they are onboard with it all.
I have started doing an emotional magnetic board with my son before he goes to school and when he comes home. It gives him the opportunity to show me how he is feeling. I ask why he is feeling like this.. sometimes he tells me but sometimes he doesn't I don't push for him to tell me though. It really helps and sometimes he tells me something that has happened that day that upset him (it could be the smallest of things).
I hope this helps.
The emotional board was bought from the works xxx

Sleep is an indicator of autism. Its common fir children on the spectrum to struggle falling asleep . This has become more marked in dd as she has got older. We are on a waiting list for sleep clinic locally.

In trrms of ways she fell behind...actually falling behind isnt the right way to say it. Ahe began to struggle or stand out from her peers in some situations

Her teachers only noticed that she was very anxious. But teachers are not autism experts and my daughter turned 5 in 2020 so it was at first difficult to pick the effects from lockdown

She disliked group play with children and once she was 5 6 7 become clingy to me in social situautons. She couldn't just randomly join in with other children as her older sibling could in park etc.

She disliked change or things happening unexpectedly. She had a poor restricted diet particularly disliking the smell and sound of fruit being eaten

She struggles hugelu with empathy and can appear rude. She doesn't follow normal patterns of conversation ie. Interrupts a lot talks excessively about her own obsessions even when i can tell people are not interested. It is not in the normal framework of how a child her age talks. But it really became apparent more recently ie. 7 or 8 yeRs old.

Obsessive interests. Stimming. Flaps hands. Talks to herself moving around playing on her own

Dm me if you want. I think its also possible youŕ child is strugģling with an unkind reception teacher and new school. But i would still say be very pushy on her behalf. No reception teacher should be harsh !

@Genners she was just unable to cope with the noise and behaviour and everything going on. She had perfect attendance in primary. Apparently it’s fairly common as primary is very familiar, one room, same teacher, same kids. So you learn to cope with that.

Over the years she did get quieter and quieter at primary. There have been issues over food for several years but no major flags. Increasingly since secondary she became depressed, unable to cope with noise, smells, change. She has become routine obsessed in the last couple of years. She was in lots of clubs and went lots of places particularly before covid. Lockdown hasn’t helped and probably increased her issues.
The thing that secondary pointed out that in small groups or with individuals she seems fine, so she can hide her issues fairly well.
I wish we had known earlier as things take years to be sorted. The earlier you know the more you can prepare.

I have a very social child with ASD. He has great eye contact etc. and you would never know he has the challenges he does unless you had spent a significant amount of time with him. I was told categorically by their first school that he did not have any issues at all. They were wrong, he was just very good at masking and using all his intelligence and energy to cope. We already had a lot of high functioning (hate that description) atypical ASD so I was very aware of unusual presentations.

Unfortunately masking usually slowly begins to fail as the social and other demands increase, which is why so many children fly under the radar until year 6/7. I am very glad we started the process of diagnosis as early as we did (against the school, GP's advice etc.) as we were much better placed to put interventions in place when things became more tricky. He is happy and thriving, understands how he presents and has increasing skills to deal with his challenges. Knowing he is ASD is a very important part of this.

Just wanted to pop back on this thread to say that if you DD does have ASD then she isn't regressing.

All her skills and personality are still there. She's just having to adopt some behaviours to cope with a stressful environment.

If you can work out what her stressors are and work with the school/after school clubs to reduce them then you will see more of the girl you know and love.

She sounds just like my DD. Very bubbly, very outgoing, very social and adores other kids. Yet goes off into her own little world at times and has many of the traits you describe. She was diagnosed with ASD a month before she turned 5.

It sounds to me like she’s struggled to adapt to starting school and is probably exhausted by friday evenings. I wouldnt immediately jump to ASD based on what youve said but even if it is, you should focus on getting to the bottom of what is making her feel stressed or anxious and trying to help her with that. Speaking to her teacher is the first step.

Thank you @maskersanonymous @JubileeTrifle @waterrat for sharing your stories, it really means a lot to me.

I'm definitely taking some action soon as I have questioned some of her behaviours for a while.

The thing is, aside from her very outgoing and sociable personality, she does have a lot of empathy too. When I met her teacher at parents evening (didn't have concerns back then and the teachers said she was doing great) she mentioned how kind DD was, she's always looking out for other kids and helps and so on. Plus she told me the other day about a boy in her class who apparently is very disruptive: 'I don't think he is naughty, he just doesn't know how to make good choices', which I thought was so endearing. I asked her if her teacher said that, she said no, I just know it.

Is she getting any support now?

The thing is, aside from her very outgoing and sociable personality, she does have a lot of empathy too.

It's a misconception that autistic people can't be empathetic. Some have zero empathy but it's just as common for them to have too much. I suffer (and yes it is a problem) from extreme empathy.

Thank you, I will speak to the teacher.

My daughter flapped her hands from when she was a toddler until she was about 8. She very, very occasionally still does it now. She also used to swing her legs a lot when she was on stage/sitting in a chair. And she's dreamy and often goes into a world of her own.

She's 12 now and definitely not autistic.

So glad to hear this x

OP I had a thread on here a while
ago about my DS being shy at preschool. There were hundreds of posts on it telling me he almost certainly had ASD and I needed to get him on the pathway for diagnosis now before it ruined his life. Guess what, turned out he was just a little bit shy. 6 months down the line and he’s started school and has loads of friends.

My point is that (a) little kids change and develop all the time, (b) there isn’t anywhere near enough in your post to suggest ASD when you look at the actual diagnostic criteria and (c) random people on mumsnet can’t diagnose your child. Yet from experience weirdly there seem to be loads and loads who love to armchair diagnose autism. If I were you I’d be much more concerned with what was going on in her class and why her confidence seems to have been dented.

Thank you so much for your advice, so glad to hear that your DS is doing great despite your initial worries x

I'm definitely concerned about her class and her teacher. Hopefully I'll get to the bottom of it. Definitely cutting down on after school activities and spending more time at home chilling.

Lovely OP, I'm not saying your DD does or doesn't have ASD, but, if it turns out that she does, then I promise it's not the end of the world. I can understand the worry, especially if autism isn't something you're familiar with, but the spectrum is massive and diverse. Yes I have my struggles throughout life, but I've also done well at uni, got a professional job, house, kids, husband, mates... Yes, we are all different, none of us want our loved ones to struggle, but please try not to panic too much. I'm a bit knackered at the moment from the newborn waking every 2 seconds but I hope I've made a kind of sense! Wishing you and your DD a lovely Christmas if you celebrate x

@MarmadukeSpillageEsquire Thank you for taking the time to post your advice, I appreciate it. I hope you have a well deserved rest soon and a lovely Christmas xx

I wanted to endorse what a PP said about the school system. It can be massively burdensome to one so young - they have barely left the womb and they are under the thumb of this repressive education system. An exaggeration I know, but being on this world for only 4 years is a very very short time - and they have so much to learn in that time - I am not thinking academic stuff. Learning how to get on with others, to fit in etc. Stimming is not necessarily abnormal. I can just be a way of coping with a situation that she cannot deal with:

"Self-stimulatory behavior, better known as stimming, is a type of sensation-seeking that can ease feelings of anxiety, frustration, and boredom. Some people find stimming pleasurable and fun. Although stimming is commonly associated with autism, almost everyone stims from time to time. Stimming is especially prevalent among children."

Little girls often twist their hair - all mine did - it does not mean they are on the spectrum.

Maybe she was anxious, frustrated or bored. Do not forget that school is a grossly abnormal environment in may ways. A very very small person with limited experience of the world and its ways is suddenly flung into a room with 30 others and being asked to do things that have no relevance to her life as she knows it.

I think you should relax about this - she has not regressed as such, but is responding to what she sees around her, which means that sometimes she will be content and others she will zone out a bit to regroup. It does not mean there is anything wrong with her.

If she enjoys drama, then maybe she should continue - although a drama class does seem a bit of a heavy number for one so tiny. A day at school is probably entirely sufficient.

Please do not worry - if by some unfortunate chance she does have a degree of ASD then this will show up in its own good time, but at this stage she is a normal wee girl trying to make sense of the massive bombardment that is school.

PS - if the teacher is a bit grumpy, then she is right to zone out a bit!!

@Mischance Thank you for your advice.

I've helped with the school a couple of times last week and I found the teacher very unapproachable and patronising so I do understand why she might feel this way.