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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to think that trying to obtain a diagnosis for a girl with ASD is like banging your head against a wall?

83 replies

Busybecca · 28/06/2017 22:37

DD is almost 5. She has struggled daily, forever. Her sleep is appalling. She hates affection or physical contact - screams throughout teeth and hair brushing and washing. She has a very limited diet and eats the same foods in the same order each day. She has never had a friend. She isolates herself. She has no tact whatsoever. One minor incident in the morning will mean the rest of the day is a write off. She won't use toilets anywhere but home and doesn't want to go out. She flaps and covers her ears at crowds and noise. She used to run into the road to escape if the wind blew on her. I have worked with children with ASD and am 100% sure that is why she's struggling.

Before she started nursery I went in to voice my concerns. I told them DD was under a paediatrician and handed them the autism questionnaire to complete and return three months after starting nursery. DD would come out of nursery and completely ignore the other children. She wouldn't eat, drink or use the toilet there. She said it was too noisy and the other children were irritating. A little girl took a particular liking to DD and one day was distraught because DD told her she didn't like her and to leave her alone. Her teacher told her off (which sends DD absolutely hysterical - even the slightest hint of wrongdoing and she cannot cope) and later I spoke to DD and she just couldn't see what the problem with being honest was, and thought it was good that the girl had been upset because maybe she'd leave her alone now. I organised play dates with friends DC and DD completely ignored them or actually ran away from them. Nursery completed the questionnaire after she'd been there for three sessions answering the direct opposite to anything that might indicate autism and wrote that DD presents as a completely normal 3 year old Hmm

When she started reception, again she wouldn't eat, drink or use the toilet for the first six months. She'd go to activities Then move away if other children joined her. She ignored her peers outside of school. She's always been reluctant to go and the morning is full of upset but it's nothing to do with leaving me. Her work was years above the average. Her reception teacher only filled in three questions and wrote that the rest weren't relevant to this age group Angry

So another six months to wait for a review and today I discovered what the new reception teacher had responded to the questionnaire. It only scored 50 so no diagnosis. The 'struggles to make friends' question was answered 'slightly agree' - she's only last week classed someone as a friend, before this everyone was too noisy end irritating. The 'struggles with changes to routine' was definitely disagreed with, even though she's come out of school inconsolable if the teacher or day has unexpectedly changed.

The paediatrician kept repeating that she's coping fine at school and doing really well in her school work so there's no need to worry. That she may well have traits but as long as it doesn't affect her schooling it's fine Hmm Have we tried sleep training? Have we tried refusing to let her be faddy with food? Have we tried punishing her for hitting and being rude? Apparently all her issues must just be coincidences because she's alright during school hours.

It's bloody ridiculous that I see her 1:1 in so many situations and how she struggles, and know how we adapt absolutely everything to her yet her teacher who has thirty other children to concentrate on holds more weight than I do. It's ridiculous that the paediatrician thinks that because she can hold it together for a few hours at school, the hours of misery at home don't matter.

I argued my way to a further review but honestly, I feel it's pointless and that as long as DD continues to be withdrawn and isolated at school then she's going to be totally ignored and unsupported. AIBU to think the whole process is absolutely flawed and frustrating?

OP posts:
ExplodedCloud · 29/06/2017 13:18

She's still sad. She's often excluded. Not quite as spectacularly as this. We have tried not to dwell on it with her. She knows I'm angry and sad that they don't see the brilliant, loving and funny girl I see. She knows I have her back.

ExplodedCloud · 29/06/2017 13:19

Sorry becca didn't mean to hijack :(

monochromeunicorn · 29/06/2017 13:36

I have a 10 year old with ASD.

She doesn't mask at all, and I think her ASD is pretty obvious to anyone who spends more than a few minutes with her (I get complete strangers asking me if she is "on the spectrum" e.g. waitress in restaurant who took her order!!) , but even then she wasnt diagnosed until 8.

Things became a lot more obvious once she was about 7 and she moved to juniors. Before that school were happy to put all of it down to her being immature Hmm

FinallyThroughTheRoof · 29/06/2017 13:39

Aww. Am glad she knows you are there for her. I was excluded all the time and didnt tell anyone. It would have helped a lot. Hopefully that will be the last time too once you address it.

Groupie123 · 29/06/2017 13:41

From your description it seems like a clear cut case.

vickibee · 29/06/2017 14:10

After being very pushy the school has got a language and communication specialist to offer my DS some one to one. Early stages but they have explored what autism is and how it affects everyday life. They have showed a short video clip to his class without identifying him. From here they are looking at an intervention called 'circle of friends' - please see NAS website as a lot of info on there. This may suit your DD as it sounds as if she has similar traits to my DS. He seems +ve about it and if it boosts esteem or reduces anxiety it will have done some good

ExplodedCloud · 29/06/2017 14:30

Thanks vicki. I suspect they did a lot of this with a lad in her class with ASD before dd joined and he is far more included. The Social Comms team were involved about her anxiety which is the school's biggest bar to doing anything. She freaks out at everything they would usually use! DH is going to see the head either today or Monday.
I will also suggest the circle of friends stuff and ask the other ASD mum about it.

Ericaequites · 30/06/2017 01:33

I graduated summa cum laude from university, and have read more novels than most English professors. I wasn't diagnosed with the disorder formerly known as Asperger's until I was fOrty-one.
Good luck getting a diagnosis and effective support. I wish you and the other parents seeking confirmation compassion and hope.
The books The Out of Sync Child and The Out of Sync Child Has Fun are very useful reads also.

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