Does this sound like neurodivergence or a sensitive temperament?

[kvazzy]

Hi everyone,

Posting on AIBU for traffic.

I’m trying to make sense of my DD’s profile and would really appreciate balanced perspectives, especially from parents of neurodivergent children or people who know this area well.

My DD has just turned 5 and is in Reception. Overall she is doing well. School are happy with her progress, she is developing well academically and teachers say she is on track. She also does well in structured activities such as tennis, ballet and singing. Teachers/coaches generally give positive feedback. She has a lot of energy, but can also concentrate.

What makes me wonder about neurodivergence:

• She is very emotionally intense and can get very upset over things that may seem small.
• She finds losing, being second, or another child being “first” very hard. For example, if another child overtakes her on a bike or runs ahead of her, she can become very upset and say she doesn’t want to be friends with that child anymore, although this does not last.
• She can take refusal very personally. If another child doesn’t want to play her game or do something together, she can experience it almost as rejection of the whole friendship.
• She can be quite controlling in play. She loves children and wants to play, but sometimes wants very intense, close interaction and struggles when the other child wants space or wants to do things differently.
• She has some sensory sensitivities: hair brushing, hair washing, nail cutting. We have to put a cartoon on while doing all these things.
• She can be perfectionistic. She has said things like “I am not good enough” and can become very upset if her writing or numbers don’t look right.
• She is very sensitive to criticism or correction and can become upset if we point out mistakes.
• She can resist everyday demands such as dressing, handwashing and stopping play. We often have to make these tasks playful or interesting for her.
• She can be very shy around other people at first, especially adults.

What makes me less sure it is neurodivergence:

• She is very socially motivated and has always loved being around children.
• She has rich imaginative play and creates lots of different scenarios and games.
• Her play is flexible in the sense that she invents new games all the time, rather than repeating one rigid script.
• She generally does well at school and in structured classes.
• She can follow instructions and wait her turn in after-school clubs.
• She has good language and can often explain her feelings afterwards. For example, after one big upset with friends and craft materials, she later told me she was scared the other children would take her things without asking.
• She usually recovers after meltdowns and can go back to playing happily.
• She seems very empathic and relationship-focused, sometimes almost too much so.

I suppose what confuses me is that she is not withdrawn or socially uninterested at all. If anything, she is intensely social, very imaginative, bright, energetic and sensitive. But she struggles a lot with rejection, losing, sharing control, and feeling that her things or her place in the group are at risk.

Does this sound more like possible neurodivergence, or more like a highly sensitive / intense / strong-willed child who needs support with emotional regulation and social flexibility?

Well, she would tell you now that she was scared of classmates being sick and it was triggered by one of her friends sitting in class with one of those cardboard hat sick bowls - she has emetophobia. But she couldn’t/wouldn’t tell us that back then so she broke down in class one day and then for several months after that she was distraught when going in. We had help from a psychologist or psychotherapist through school (and a CAMHS referral that eventually resulted in an assessment) but it was only really the fortuitously timed lockdown break that reset things.

She had a couple of good years after that but Y6 was very hard (didn’t click with her teacher) and then the school refusal problems kicked in again at secondary, which I’d feared might happen as it is so common in autistic girls but they didn’t have the resources to put in (v minimal) requested preemptive support, we just had to wait for her to fall apart. Finally at the third attempt (and with great therapy and an EHCP) we seem to be in a good setting in Y9. I just mention this because if not identified early on and there is some neurodiversity going on with your daughter, she might muddle through primary ok but struggle later on.

A couple of things I remember from the early years: she would overreact hugely to minor advice (eg ‘Watch out for those stinging nettles’) and to changes of plan (eg a cafe running out of doughnuts). The keyboard warriors would put this down to crap parenting but it was RSD and the need for predictability.

School is still quite hard but she has come so far in other respects, 95% of the time to talk to her you wouldn’t know she was autistic.

Thank you, yes we are getting there.

Both a real rule followers, it presents differently in both but they are both terrified of getting told off. They are also both terrible sleepers and always have been - my boy - at age 4 was going to sleep at 10.30/11 and up at 6.30ish with multiple difficult wake ups in between. They both struggle to get to sleep and then to stay asleep. I'd say both have a lot of anxiety - which we work hard on.

In school specifically:

One of my children was struggling academically, they were receiving extra support for this but it wasn't helping much, they also hated school (a lot) and were extremely shy and quiet, never joined in anything in lessons etc. I believe the key issues were around concentration, focus, lack of eye contact, trying to hide away, and often getting very overwhelmed and shutting down. They did have two friends so were social but otherwise very distant and disengaged - very reluctant to speak to an adult unless a very trusted one (so found it hard to engage with a supply teacher for example).

The other one is very different, they are very bright, top of the class, spoke early, read early - were reading chapter books at the end of reception. Super focused on routine, found transitions hard - struggles massively with any sort of change big or small. For example, the kids were all moved around the class after the first term to new seats, this led to weeks of tears and upset which took a long time to understand - the issue was that 'nothing looks right' from the new desk. They also have a lot of strict rules like if they touch their cheek, they have to touch the other cheek or they feel 'weird', they like to crawl around too which is odd - just little things. Unable to work in a group without getting very upset as people don't follow the rules (even if there aren't rules). Very black and white thinking and a very strong sense of justice (which is not a bad thing but can cause upset with friends at times).

They also both stim which was flagged - my girl mostly with her hair.

One is a girl and one is a boy - I would say my boy masks more than my girl actually - but they are both very different.

Girls usually have mental hyperactivity. Although DC2 was physically hyperactive but I didn’t think anything of it because I am too so it seemed normal to me.

I think teachers have so many tricks up their sleeves to engage children that it is hard to notice a concentration issue, especially in a bright and motivated child.

I can’t advise on what the GP would say if the school is not supportive but I would press ahead. Maybe consider the Right to Choose pathway? That is going private but the GP can refer and •might• agree to prescribe the ADHD meds on the NHS. DC2 and I went fully private to a psychiatrist who used to be the consultant in charge of adult ADHD in
out local NHS trust. Luckily the GP agreed to take on the prescriptions straight away. If you do go fully private, choose a very well respected one. I found mine by googling something like ‘most experienced ADHD psychiatrists UK’.

incidentally if your DD does have ADHD, either you or her dad (or both!) probably have it too.

Normal child.

You've name changed and adjusted a few details but I recognise you.

Please please please get help.

I have been reading through everybody's comments and thought I would just give my perspective.
My DS is 4 and will be 5 in November. He has been diagnosed with autism. The behaviours that you describe are very similar to that of my DS. He is a very social boy, great with imaginative play but struggles with every single aspect that you have listed.
Every child is different, regardless of ASD or not. Unfortunately everything you have listed could quite easily just be behavioural or could be neurodivergence.
Have school picked up on anything at all?
All I would say is to keep monitoring and if you really have concerns then seek professional advice.
I followed my gut with DS and I was right, despite on the exterior he could easily be passed as neurotypical

Thanks that's interesting. 🙂 Is it inherited usually?

That sounds quite fun actually 😅

It’s fun if you can do it! Less fun when you have to name as many occupations starting with (say) P as you can, and you both sit there in awkward silence 🤣

The fascinating part is that since taking ADHD meds I enjoy sudoko and logic puzzles. They used to really tie my brain up in knots because I can’t normally keep the info in my mind long enough to really think about it, if that makes any sense.

I will never recover from a lifetime of being told I’m lazy, overemotional, dramatic and so on, but I’m glad to have the meds now that keep me so much calmer.

Thanks @IAmUsingTheApplauseReactionSarcastically

Sounds like some years were quite tough, so sorry!

DD would not normally get upset because of an advise, but she would often hate when we "criticize" her - saying she wrote the wrong letter, she behaved badly etc. In terms of flexibility, she is actually surprisingly a flexible child and would go along ok if there is a change of plan or a substitute. But I keep in mind everything you wrote.

pleasure.

Yes, ADHD and autism are usually inherited. They are not like what we usually call genetic conditions where the person who has it inherited a faulty gene from each parent. It’s more like a large collection of small genetic variations.

Thanks @Cakeandslippers from what you are describing DD also hates being told off. She would lash out, refuse to listen when this happens!

Help with what??? Are you sure you are not confusing me with anyone as this is the first time I am posting about DD's behaviour?

Hi @ForPoliteWasp did you decide to go with a private ND assessment? Was it because of the signs I described or were there any other issues? A lot of parents here wrote that their DCs had strict routines/inflexibility and struggled with a change. I don't see that in my DD at all, so need to consider everything before actually paying for the assessment.

DD's school raised her not being confident with some adults/authority figures as the only concern during parents evening but they don't want us to do anything about it as they think it's her personality.

I'm sorry you had to deal with that, but I'm glad the meds are helping now. That's interesting about the puzzles🙂

Ah ok that makes sense. 🙂

My DC was diagnosed at age 20. I was still in constact with one of their secondary school teachers and they were very surprised when I told them that DC2 had been diagnosed with ADHD. Some kids are excellent at masking and I’m guessing there are many teachers who don’t notice it with high maskers - not that I am blaming them because it is not their area of expertise. From y8 onwards , the teachers and I did know that DC2 had problems but we didn’t know the cause.

So, in our case I was almost expecting it because I’m autistic and two of her older sisters already had a diagnosis. Although their presentations are completely different to hers!

I was of course watching her from a very early age. The autistic things I noted early on were;

-An extreme interest in both letters and numbers from the age of about 1 and a really good memory. From about 2 she started reciting the order of planets in the solar system from the sun.

Flapping when upset. She has always flapped from a baby. Her other diagnosed siblings didn’t do this. She’s also always had hand stims.

Fussiness with food from a young age. She would only eat certain things in certain settings. At nursery, she just would not eat anything. As a small baby, she only wanted to breastfeed on one side.

not wanting to change her clothes, ever and getting upset about change of routine.

Being upset around people she didn’t know and getting very upset at a noise or sound and we couldn’t figure out why.

She got toilet trained at 2 but then started holding her wees in so we had quite a big regression until she was 4.

At playgroup, she would play appropriately and socialise with the other children but at snack time she would flatly refuse to sit down at a table with the other kids and also rejected the snacks. At the end of playgroup, the toys would be put away and there would be songs but she never wanted to stay for the songs and would loudly announce ‘I want to go home, now!’

Her speech has always been very advanced for her age but it also sounds very formal. After she started nursery, her confidence improved massively and she will now just go up to anyone and start talking, but the thing is that I believe she does this to try to control the situation she’s in.

It was us, and her childminder who she also spent a lot of time with. In fact, her senco at infant school was of no help whatsoever. This was because dd was meeting academic expectations across the board. We were told by her we wouldn't get an ehcp, especially without a diagnosis (at that point). But we did. The EP noted quite a lot of performance anxiety and a huge disparity between her expressive and receptive language. She wasn't taking in verbal instructions and information, but her visual memory and pattern recognition was in the 98% percentile. Her updated ehcp now that she's diagnosed will make much more of using visual aids to assist with her verbal comprehension.

Sadly for us, the most troubling symptom has been several bouts of school avoidance (Y1 and Y4) due to burnout/ high anxiety. This extended to other areas of her life she had previously enjoyed and she became temporarily agoraphobic on both occasions (currently recovering). The multidisciplinary team who diagnosed her noted her exceptional ability to mask her differences, so quite often throughout our journey it has been our word against school's. That obviously changed when we were no longer physically able to get her into school. Her sensory differences also went through the roof (at one stage couldn't tolerate clothes).

The team said that had they based their findings only on the clinical ados assessment she'd have fallen below threshold, but overwhelming evidence from multiple other areas meant she comfortably met the diagnosis threshold. She's the classic 'holds things together until something changes and she's no longer able to meet demands'.

It's taken us 4/ 5 years to get to this stage. She's currently still out of school (since December but great attendance until the wheels came off) but making good progress. She has a reintegration plan in place with the local authority.

She was diagnosed at 5. As I say, we were looking for signs anyway. Nursery and school were aware of our family history. School said they were seeing autistic behaviour at school. I think that some schools don’t tell parents unless they’re open because a lot of parents don’t want to hear it.

At school, she’s doing well academically but all of the emotional regulation problems are causing quite a lot of unrest for her and us atm.

This , and start to teach her that other people can win too, that as long as she does her best that is what you want, that sometimes things are hard but that doesn’t mean we don’t give up. ie teach her about life, praise her for the things she finds hard as well as the things she finds easy, for the times she is kind, for the times she does little things that show grace , for her smile, for her hugs, for picking up her toys and socks off the floor, for honesty, for politeness, ……

Psychologically having a need to achieve perfection can be a hard frustrating life, especially when it is teamed with a fear of failure, and can actually lead to children giving up on hard things because they feel they will never meet their own standards. Giving children the resilience to try new tasks and experiences and to pick themselves up if things go wrong is a great gift to instil.

I never even thought of dance routines as stimming. Yes to hair twiddling to self soothe. That’s a bit of a light bulb moment for me and my dd.

Wow. Chill out. She sounds completely normal. Every child has quirks. She’s been alive 5 years! She doesn’t need ‘her profile’ understanding

Thanks for such a detailed description @MyTrivia . I appreciate it!

Nothing seems to match DD's signs. So good your DD is so confident (I love it). Mine takes some time to warm up especially with adults.

Yes, there is definitely a very big picture when it comes to diagnosing autism. It’s a lot of very specific, different areas.

That’s why I get frustrated when people say that a diagnosis is given out easily.

I hope everything works out for your dd. If she’s happy that’s all that matters.

@Whatafustercluck thanks for sharing. Performance anxiety does ring a bell with my DD too!

The school joinery sounds really tough. Reading this made me kind of glad that DD expresses her dislikes straight away. I think it's very tough when they are masking!

Did you ever find out what made her to refuse the school? I hope it's not bullying or anything nasty anyone did towards her?