Is my daughter neuro diverse

[Ismydaughtertypical]

I’ve just been crying on her bedroom floor and I need to see if this is just me.

tldr; I’m not sure if my daughter is neuro diverse (and even if she is wtf to do about it knowing that those so much worse than she is can’t get help)

my daughter is almost 5. Really easy calm baby. She has a grandfather and aunt who are both ND.

she’s VERY intelligent. Bright beyond her years. She is very verbal and was talking before the age of 1.

she is wonderfully well behaved at school - no issues there. She has friends and is genuinely interested in others. She does like to copy her friends but no more than normal for this age. She plays well and role plays / imaginative play.

she sucks her thumb and has a comfort item that she has a lot at home (but can leave at home) she taps the bridge of her nose while sucking her thumb sometimes.

she can have big tantrums when she doesn’t get her way. She can struggle with being told what to do e.g do a wee before leaving the house or to stop watching TV

she can concentrate for ages on TV. She has favourite shows that she will watch constantly for a whole and then move on.

she has HUGE issues with withholding poo (this caused my tears today) she was supposed to go to a party today which she was so excited for but we’ve missed it because she’s so backed up she’s pooing her pants and really unhappy.

she goes in cycles of withholding, we end up in nappies, she finally goes, gets into a good routine, then holds again.

m we’ve just come out of a horrible week or two where she was refusing to sleep. She’s insisting on having the light on. She screamed the house down one night saying she was scared but couldn’t tell us of what.

there’s lots of little things that just make me think her brain just isn’t the same as her brothers or mine. But I know she’d never get assessed for anything.

what do I do?! I’ve literally just cried my eyes out. I’m so sad she missed this party that she was so excited for.

help

She doesn't sound particularly ND to me. Why do you think she's withholding poo and not just experiencing constipation? It would be a classic sign of dairy allergy.

He brother has CMPA so we’re a dairy free family. One thing I know is it’s not a food allergy (she’s been tested for a few due to her brother)

the withholding started around 18 months ago. In the really hot summer she ended up in hospital with dehydration and that led to the first round. However with help, medication and support it got sorted.

for the last 9 months for so she’ll be fine for a while and then withhold again. The last time it seemed to link with starting school (which she loves and was so ready for)

this one seems to have come out of the blue with no obvious trigger.

she rarely gets ill so it’s not like she’s had a tummy upset or anything.

she shows some signs of PDA and responds well to some of those techniques. Particularly in this regard but to get improvement we have to go through the period of her pooing her pants. It’s just disgusting.

Oh I should also say, we see her do it. When the urge to poo comes to stiffens like a board and holds it in.

Is she on Movicol? If not it would be worth asking GP for a maintenance dose.

She sounds VERY similar to my daughter. She was diagnosed autistic age 13. We had no idea until a period of poor mental health.

Then you'll know non-ige allergies don't show up on tests. I'd still consider diet. Especially if you sub something like soya or oats for the dairy.

She could be, my dd was flawless in school untill it all got too much. She is very demand avoidant and it took years and teats to get her reliably dry and clean day and night .

I'd say to treat the different issues, and may be speak to the GP. about a community paediatrician referral. My children at both ND (15 year old DD diagnosed, 11 year old DS not yet but ADHD poster boy) the whole thing takes ages to progress so get in early with your issues ... ask for a referral though
Have you got a continence nurse by any chance to help with the withholding? Does anything like lactulose work?
Good luck, it may be just growing up issues children go through but may be ND, worth that talk to your GP and take notes so you remember everything

We’ve tried that. It’s messy. It just increases the leakage.

shes also terrified of doctors (despite wanting to be one when she grows up) likely caused by her two trips to hospital. She’s only got sick twice in her life and both times in hospital. When she went in dehydrated we literally had to hold her down to administer some medicine as her temperature was getting dangerously high.

i don’t want people to think I’m not grateful for the suggestions I am. I think this is the 5th or 6th instance. She had to miss another birthday party because of it. She almost missed another one but managed to poo at the 11th hour.

it’s not so much the withholding it’s the other stuff around it. It’s like she won’t do it because she needs to do it. She knows she’s miserable. She knows she’ll feel better but she just can’t do it if we ask her.

she was getting the same about going for a wee. If we ask her to go she’ll say no and then tantrum.

it’s so hard to explain but she doesn’t seem ‘normal’ to me in these moments.

maybe it is normal and it’s just because her brother isn’t like this.

I don’t know. Perhaps I’m just over emotional today because I feel terrible she missed out. I’m also worried now people won’t come to her party because she keeps missing her friends ones

At her age you could get a referral to the paediatric continence service. A fried had a daughter that had the same issues. She is not ND. She is more anxiety about it and it was behavioural. She had support from the continence service and she has overcome it.

I don’t think all those thing’s particularly say ND. Some of them I can relate too from my dd growing up but she had a lot more ND traits such ,issues around food and sensory issues with clothes and phobias, she was a early talker and highly intelligent through school, she was diagnosed with Autism (Aspergers at the time) when she was 4. She’s coped through school and is now at uni.

I like the idea of a continence nurse. No idea there was such a thing. I’ll have a google if we have one here.

my friend has a daughter who is so clearly ASD with PDA but she’s getting no where with any services so I know it can take years. My DD is so good at school that I know they’d not think there was anything wrong

I'd look into hyperlexia and see if you recognise her type of literacy skills. Toileting issues may be a difficulty with transitions, as unrelated as that sounds. Avoiding gluten and lactose can help some toileting issues and increasing fibre in dirt and keeping a little food/toilet diary can be a help in terms of looking for patterns. Some children can get alot from yoga or even massage of the back and tummy area to help the process or just encourage relaxation. The things you mention are very common to many children at that age and many grow out of these things in time, others learn strategies and being ND can be great when you understand it.

I work im SEN and have 2 children with SEN needs. I also suck my thumb/tap the bridge of my nose 🙈 and i'm 40! Nothing stands out to me to be ND with what you describe.

Join Movicol Mummies Facebook group to try and get on top of the withholding. Everyone in that group is a parent going through it so you'll get lots of tips & advice there.
From what you've said (& from my own experience personally and as a parent) your daughter sounds neurodiverse to me.
This is only a 'problem' if it's causing problems. Again from my experience, problems might not show up until she's much older (if at all!) She may just develop coping strategies and find a job, life situation etc that suit her!

I'd try first addressing the issues that you're aware of (withholding, her possible PDA profile) & be vigilant for future struggles & address them as they crop up.

Try something.. Next party invite don't tell her until you pull up at the venue... Maybe she is getting herself worked up and can't poo.

She sounds very similar to my DD who is ND.
I have so much sympathy for you, we missed so many days out and school days due to the her toileting issues.
She began withholding at about 3 years old and we have it under control now with a daily maintenance dose of movicol but that has taken 4 years, many attempts at disimpactions and 3 hospital stays.

We were told by our consultant that constipation is common in ND individuals and that can lead to withholding. ERIC were incredible in supporting us and I really recommend them. We have a EHCP in place now, which means the school is being supportive and ERIC helped with that. Do message me if you need any support, it's such a tough situation and rarely discussed!

I’ve looked up hyperlexia just now. That doesn’t sound like her. Her speech and communication are beyond her years. She’s a good reader and picking it up fast but not exceptionally so.

@HurrahWuff thank you, I’ll check out that group.

you’re right. She’s fine in most aspect and developing well. It’s just these things that cause issues.

my SiL was diagnosed in her 30s after years of mental ill health. From what I’ve heard there were clues for her as a child but back then it just wasn’t picked up.

I’ve requested to join movicol mums and will attempt to get a GP appointment for next week.

interesting about not telling her about parties. We’ve got a lot coming up (including hers) so might stop talking about them now.

My DD withheld poo until she was about 4, sucked her thumb until 8 and talked in full sentences by 1 and isn't ND

If your title was poo holding, you'd get less people saying she was ND. My DD is ND, no issues, I've known 3 people with poo issues like this, none are ND. She doesn't think the same as you because she's a different person and she's 5.

You know it started when she was dehydrated, it would have been painful to poo, now she's making it painful and reinforcing that. Even my dog tries not to poo after the vet has put something up her bum, it's a very normal reaction - it's just gone too far for you to deal with alone.

Go through the channels for continence, don't go off on tangents and try not to overthink. If you tell other parents about it, they'll know someone similar, good luck.

If she wants the light on at night I'd just leave it on.

She sounds very similar to my daughter who is ND, diagnosed aged 8. But withheld poo until about age 6, does similar (still) with wee, was a very early talker with large vocab, perfectly behaved at school, lots of friends and very sociable…but also has other sensory issues and lots of meltdowns. But as they say all autistic people are different. I’d trust your instincts on this, we spent years debating whether our daughter was (mainly on account of how sociable she is), and in fact the assessment made it very clear she is ND.