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SN undiagnosed genetic conditions

This forum is for Mumsnetters to discuss undiagnosed illness.

Not sure if this warrants a referral or not but help!

2 replies

Notaclue01 · 16/06/2025 06:48

Hello

hope I’m in the right bit but looking for some advice about my 6 year old DD.

She was the loveliest and easiest baby, slept great, wasn’t an amazing eater but a very engaged and happy little thing. When she turned 3 we had a lot of change, moved to a new area, had another baby, she moved nursery twice and as a result was quite unsettled. We potty trained her and she became fearful of going for a poo and this carried on for a long time. It was quite traumatic for both of us with lots of tears but we got there eventually though she still does need reminding to go to the toilet and will still avoid it if left.

Since three and really since she’s been able tcommunicate she’s been quite aggressive and shouty in the way she talks to us. She’s very bossy and getting her to do anything simple can turn into a stand off. This started around the time the poo withholding started.

She is now finishing up year 1 and it’s looking like she possibly has dyslexia as she finds school and particularly English and maths very hard. This runs in the family and we are working with the SENCO and teacher this last half term to put some systems in place to help her before getting a formal diagnosis.

The niggling issue I have though is her social abilities. She has friends but isn’t part of a solid group, she’s very explosive in social situations and thinks drifts around children based on who is compliant and who isn’t that day. For example, we can’t host play dates at our house as she just can’t handle them and always gets angry and shouty at me and the other child. They go better when we do an activity out of the house and she’s fine at other people’s houses and at parties as sort of knows she has to behave, this is the same at school in lessons. she often tells me she doesn’t have people to play with because she “doesn’t like their games”.

In herself she’s pretty grumpy on a daily basis. Very surly and unhappy most of the time and it’s really hard to get her to be happy about anything, particularly in term time. In social situations, particularly where there are lots of people or people she doesn’t know that well she’s just awful, screams and shouts at me about the tiniest things. It feels like anxiety as she’s so explosive but she’s never grown out of it and despite us trying to put lots of things in place to help her it doesn’t seem to get better.

we did have a referral form for Autism/ADHD as the SENCO said it would be worth looking at what the criteria is for our own benefit to narrow it all down a bit. We went through and she fit very little of the criteria for either apart from some of the social bits, but still very few.

not sure what i am asking but I just feel like she’s not like other kids but yet also doesn’t feel traditionally ADHD or autistic so I’m hoping the mumsnet hivemind might be able to help!

OP posts:
BunnyRuddington · 18/06/2025 20:31

A lot of what you’ve said sounds like my DD who is now diagnosed as AuDHD.

Good baby although quiet.

Fussy eating later got diagnosed as ARFID

Difficulties with potty training. Poo withholding can be common amongst DC with ASD

Being bossy and shouty can be linked to constipation/poo with holding and the ERIC website can be a good source of information for help with this.

It can also be a combination of masking in school, not understanding all of the social cues and maybe a bit of an issue with speech and communication? This progress checker from Talking Point is a useful tool to see if she needs any support with communication.

Ate the school doing anything like Zones of Regulation with her? And has she had a referral to Occupational Therapy?

Home - ERIC

Help us raise £10,000 support children and families with bowel and bladder issues

https://eric.org.uk/

BunnyRuddington · 01/11/2025 10:31

@Notaclue01how are things progressing with the referrals?

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