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Here you'll find advice from parents and teachers on special needs education.

ASD or something else?

10 replies

3AndADog · 29/03/2023 20:56

Hi, Please bear with me as my mind is totally consumed with this and I have a tendency to waffle.

My DD is almost 6 and for the past 6 months has been experiencing enormous meltdowns, not just tantrums. Almighty explosions of emotion that are very distressing as she won't allow me near her to comfort her and in fact they are usually directed at me.

Other signs that make us think possible ASD are sensory issues (hates hair being brushed, seems to meltdown after sensory overload eg during family trip to London, after hairdresser, after cinema etc) but is a pro at masking while its going on. She is increasingly obsessive over fairness eg having exactly the same quantity/colour/variety as her siblings, to the point we are frankly all terrified of things not being equal. She gets what I can only describe as frantic at times of transition, eg leaving house, getting ready for bed, jumping from one thing to the next, procrastinating and being unable to focus on the task in hand. I have thought about PDA. She looks out of the corner of her eyes, eye contact seems ok but watching tv/listening in class, she sits with her head to one side and looks out of the corners of her eyes. She worries a lot about what people think of her, especially friends, and wants to 'keep them happy'. She freaks out at choice.
We walk on eggshells at home, her two brothers included, and my relationship with her is at an all time low. It's heartbreaking.

I know a lot of this is common in girls with ASD. But what keeps me from truly believing it (and tbh it's occupying my every waking moment, going backwards and forwards) is that it's all very recent. Only the last 6 months, since entering year 1. By all accounts she loves school and they love her. Model pupil etc etc. High achieving, rule abiding, sweet, engaged etc. I know this is masking (if there is anything underlying) but why is it all falling apart at home only now? We used to regularly take the kids to London, big days out etc with no problem at all. She's always been good with busy places, huge shopping centres, places that make my head swim like the pools at centre parcs or Legoland. She's never been remotely fazed by anything in her busy, noisy, disorganised and frankly quite privileged life and yet all of a sudden she can't cope with the slightest disruption to a plan. We used to have an incredible bond, we spent so much time together, I travelled alone with her as a toddler on a few holidays and now I'm scared of taking her alone to the supermarket. She won't let me near her, she won't sit on my lap, just wriggles to get away from me. she has to control everything.

The only things that were apparent in her earlier years are disliking hair brushing and being indecisive in a shop eg choosing an ice cream.

I don't know what to think. We've seen an Ed Psych and waiting on a report. I think she scored really high on the IQ sort of stuff but she mentioned empathy was low. It does seem recently that she has none.

The daily meltdowns are making the whole family miserable and I want to get to the bottom of it but part of me feels 6 months isn't long enough to go looking for diagnoses.

Thank you for reading if you got the end!

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FloatingBean · 29/03/2023 21:21

I think it is worth further assessment. I would look at a referral now because the waits are long.

As DC get older the demands and expectations increase and the allowances wider society makes get less, and masking becomes much harder. If DD is nearly 6 she’s year 1. The wheels start to fall off for many following the transition from reception to Y1 as the demands increase rapidly.

If DD is at the point of not coping with life in general it can prevent her coping with things she has previously coped with.

What support is the school providing?

3AndADog · 29/03/2023 21:26

thanks for your quick reply.

The school is providing no support as she displays nothing remotely concerning until she leaves the building. I haven't really brought this up at school other than mentioning that she has these meltdowns and they all say 'oh she's fine here, better that than the other way around, very common' etc etc. I don't think they realise the extent of it, and I'm at fault for not taking it further but as I said, its only been the last 6 months if that. Yes, since the transition to year 1. I have an appointment with senco in April and I had the EP assessment done privately as an appointment was available immediately and it just fell into place. We are not UK so different system (although similar) and I paid for the assessment privately. I'll take the report when I meet with senco after easter.

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FloatingBean · 29/03/2023 21:31

DD masking at school and exploding at home is not uncommon. It is called the coke bottle effect. It is a sign of unmet needs at school. If school life was easier for DD home life would improve for you all.

Do push the SENCO, the school should be providing more support.

3AndADog · 29/03/2023 21:39

I don't know how to get to the bottom of it though. DD says she's fine at school, she has friends, is academically doing well. I have no idea what adjustments could be made to help her. EP suggested she is not being challenged enough but that seems a little simplistic?

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FloatingBean · 29/03/2023 21:44

From your OP the starting point would be to look at DD’s sensory needs, emotional literacy and self regulation. Does the school have anyone that can deliver things like Zones of Regulation, emotional literacy support, sensory circuits? They could look at movement breaks, DD using noise cancelling headphones/ear defenders, maybe a wobble cushion, placement within the classroom.

3AndADog · 29/03/2023 21:53

I have actually ordered her some ear defenders. I know the staff very well (small school, previous DC there etc) and yes there is emotional literacy support (ELSA) but actually I don't think DD would like her very much!! Never heard of Zones of Regulation but self regulation is what she needs out of school for sure. at school she just seems to be totally 100% all day. They think she's amazing. Its so hard to imagine trying to persuade them otherwise, I'm sure they'll think I'm a hysterical mother

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Magentaa · 29/03/2023 22:06

I totally relate. We are currently consulting with the gp regarding sensory and behaviours but at school she is a model pupil, ahead of her peers high achiever. They don’t see any of it but this is because she is a people pleaser and is scared to be pointed out in front of the class for doing something wrong, she’s a perfectionist too. She was told not to fidget at school so now she won’t don it but if you saw her at home she can not sit still so must be so hard for her keeping this in at school hence meltdowns when she gets in. I think once she’s in year 1 she will start to struggle with the sitting still and concentrating as it’s more structured. Maybe they might listen to me then 🙄

FloatingBean · 29/03/2023 22:11

The skills and strategies for self regulation can be taught and supported in school something like Zones of Regulation would help with this. It is likely to help at school as well as home because the home difficulties most likely stem from unmet needs at school.

at school she just seems to be totally 100% all day.

The important word here is “seems”. If DD is masking, and it sounds like she is, it is just an appearance of being fine. Underneath that there are unmet needs that need supporting.

Jules912 · 30/03/2023 09:09

My DD was fine at school until the cracks started to show half way through year 1 when it got more formal (they went slow as their reception year had been so disrupted) and then the wheels came off completely in year 2. She is now waiting for an assessment but when I was completing the forms I did find little things from pre-school (and even when she was a baby) that I'd just thought was her personality or due to being Autumn born i.e. strong willed, bored in nursery, hated structured toddler groups.

3AndADog · 30/03/2023 18:41

Thank you for these replies, yes this seems to be the pattern - no signs at all a couple of months into year 1. I still struggle to find any signs evident in her preschool years though, other than wanting to be very independent and ‘strong willed’. She met all her developmental milestones and threw herself into life with her two older brothers as soon as she could. She was such a happy, content little thing and so sociable. Absolutely loved toddler groups and fitted in well either wherever we needed her to go as the third child. But I know there is something underlying these meltdowns and general demand avoidance, I just need to get to the bottom of it.

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