To wonder why nobody thinks my DD is autistic?

[Nobodylistens]

DD is 11.
She has always been quiet, intelligent and rather intolerant of peers her age.
At some points it came across rude - she got to about 6 and couldn’t see why kids her age were still running around dressed as fairies so would rather play alone or with one other child similar in nature.
As time has gone on, she has become more and more socially awkward - she hates any situations where she will have to talk to people she doesn’t know and refuses completely to attend holiday clubs for me to work but also won’t be left alone at home for any length of time in fear for someone breaking in ( we’ve never had a break in )
Shes not affectionate and tenses up completely if anyone shows her any affection and is clearly visibly uncomfortable; tears when nan tries to hug or kiss her goodbye ( we’ve had to tell nan to stop in no uncertain terms )
Shes now gone vegetarian which is fine but can’t accept others in the house are still eating meat and is visibly upset at meal times where meat is being served and asks to eat in her room alone so she doesn’t have to see it
She can’t hear people eat - she leaves the room if someone makes a noise whilst eating
She can’t share a room on holiday with her sister or me or dad as she can “ hear “ us breathing and gets frustrated that we can’t sleep with our mouths closed and no noise
Lack of empathy - a toddler fell over in front of us today and older DD ran over to pick her up; DD said she should have looked where she was going
Massive attachment to her dog, almost obsessed to the point she thinks she’s a human; talks to her, cuddles her, speaks about her the entire time we are away from home for any length of time

Lots more examples but feeling especially drained tonight as she has finally gone to bed after being convinced that the flies we saw on the dog walk might now be in her bedroom - she doesn’t want to sleep with me; says that’s weird at her age ( even though 13 year old DD sometimes does ) but sometimes just won’t / can’t sleep so sits up all night as I won’t let her have technology after 8pm so just repeatedly comes in to tell me she’s bored and can’t sleep but doesn’t actually want anything I can offer.

Im sure there’s something going on but nobody agrees.

anyone been here?

With the best will in the world, "something going on" and autistic are not the same thing. Not remotely. If you have a concern, what are you doing about that. Have you spoken to the GP, school or anyone else? Or are you just deciding that there is something wrong with her because she doesn't fit your mould? FWIIW most of that would have described me growing up and I am not autistic.

Have you actually asked for an assessment?

I say somethings going on as I guess the only thing it could be is OCD but a lot more resonates with Autism
Im a teacher so I see a lot of masking in girls particularly and think DD has just got really good at it in school as no teacher has been concerned - I’ve asked every year if they are
GP said school needed to be concerned in order for an assessment - I know it needs to be in 2 places but it is in every single place other than school

100% what @Quveas said.

People can't just believe your DD is autistic because you want them to, that's outrageous! she may well grow out of many of the behaviors you describe but if you are concerned take her to the GP.

I have taken her to the GP

Its not outrageous to want other people to listen to the behaviours I’m dealing with constantly I don’t think

I think I understand, @Nobodylistens . DD2 was in her 3rd year of her 3rd school before any school staff took me seriously about her ASD traits. She had left the other two schools because she couldn't cope, but she masked beautifully and grinned like a cheshire cat when she was nervous, which made her look insanely happy. Finally, in year 5, she couldn't hold it togther anymore and they realised that they had a problem. They supported the ASD referral and she finally got her diagnosis in year 7. Now, year 11, she is in an independent specialist school because she completely lost her ability to cope in her secondary school and ended up out of school.

Sounds almost identical to my just turned 12yr old daughter. She does have other serious and complex health issues going on resulting from almost dying last year from covid. But my daughter has struggled with patience around friends and silliness. Is vegan (we all are) but she is very vocal about people eating meat and rude. She is obsessed with one of our cats (sphynx kitten). She has been unable to go to school since last September and is glued to me. If it's ok can I message you, so much I could write that matches your daughter. My daughter has been referred for asd assessment. She has a place for a day schooling unit for children with complex medical and mental health needs. But she just won't be able to go until she engages with her tutor.

What’s the benefit to your DD of an autism diagnosis? Genuine question.

I can understand what you may be feeling, I think. The thing is, no one will know your daughter like you do, and even if people do think she may have some neurological differences they may think that saying otherwise to you is "reassuring". People are really awkward about these subjects and about other people's children .

Some of the things you describe could be lots of different things too, like OCD and anxiety. I have both and also can't tolerate eating noises or being touched in the face. However that doesn't mean she isn't autistic.

If you have concerns about your daughter and feel she may benefit from being assessed then I think you are doing the right thing going to GP - don't bother with others' opinions as they aren't relevant.

My dd was diagnosed at two but Autism Outreach couldn't identify her in a group of six, I've lost count or the number of times I've been told "we don't see autism in school" even with a diagnosis schools don't see autism IME.

Much of that sounds just like me at 11, except that if I came into my mothers room all night and waking her to announce I was bored, she'd have told me to go read a book and stop being such a selfish brat.

Would many people really take much notice of a toddler falling over in public? They fall over a lot. The parents will deal with it. I’m not autistic as far as I know but wouldn’t react if I saw that. A lot of the other stuff sounds like me as a child, I remember I was taken for an assessment but told there was nothing wrong.

Was she a late talker? How were her gross motor skills? Does she make eye contact well?
Nothing you have said has made me think definitely autism- she may just be a bit quirky and doesn’t need a label.

Absolutely sounds like autism to me - she sounds very like my DD, who was diagnosed at 8.

Her school kept telling me "she seems fine!" I eventually ended up roaring "DO YOU KNOW HOW HARD SHE WORKS AT SEEMING FINE??!"

YANBU
I could never convince the school to refer my youngest for assessment as she was always praised highly by her teachers as being “good as gold” “highly talented” “natural mathematician” “well spoken” etc so at 18 I gave up and paid for a private one. Well actually at 16 I had given up and booked one in but the pandemic meant a two year delay to getting it, and switching from a child assessment to an adult one.

It was £1400 on a credit card and will take years to pay off, but it was critical by then as she needed something to help her with Uni applications. I wish I had done it sooner as she is actually very autistic. So, if you can go for private. It’s a shame you can’t get the school to listen, but it worth it imho.

Well my autistic dd would have rushed over to the toddler because she has huge empathy my older NT dd wouldn't have bothered as she would see it as the parent's job so not sure that is a decent example tbh.

Who is "nobody"? If you mean the teachers at school then ignore them as they haven't got a clue. She sounds like she's autistic to me. Has she had an assessment?

The dog obsession was totally me as a teenager, but it was absolutely warranted because the dog was awesome. If I ever have a dog like her again, I'll be just as obsessed.

Also had the issues with people eating meat (still do, just learned how to hide it) and the noise issues at night and mealtimes- again, I still do but have just learned to be a polite adult. I was precocious and scathing about kids my own age, but mellowed out as an older teen.

I do suffer from anxiety and compulsive thoughts from time to time - but I'm not autistic. Your daughter may or may not be, but there's so much that sounds like a fairly typical introverted pre teen girl.

With the late nights, could she sit up and read? Draw? Hear an audio book?

Schools don’t see SEN because then they have to do something despite having no budget to do so.

Get a private assessment. Something is going on and there needs to be an evaluation.

My son has asd and shows a lot of these traits amongst others. You can self refer onto the pathway in most areas but always helpful to have schools support ofc depending on where you are/their processes.
I found with my son (and still do as pp said) school, even with a diagnosis don’t identify asd with the quieter, more academic children 😢

She was actually early in everything
Walking by 11 months - never crawled
Talking in sentences by 18 months and toilet trained not long after

I put a lot of her being so grown up was having a sister 2 years older but actually the older sister was and still is pretty childish in comparison

It’s more than leaving the parent to pick up their own child though: it’s complete confusion why the toddler couldn’t walk sensibly and therefore not fall over.

She also has a massive problem with being at fault; if she drops something for instance it’s because someone looked her way or she was thinking about something we had asked her earlier etc etc etc

Maybe it is all just quirky behaviour but all put together and it feels like much more!

I have been annoyed and upset from being woken all night over various “ issues “ but literally nothing works.

What was her diet like before she became a vegetarian?
What toys does she play with?
What were her first words?
How is her self care, does she shower, clean her teeth etc without issue?
If she was going on a school residential what would you worry about and what extra help would she need?
what makes her really upset and how does she show it?
if she got lost what would she do?

Other than getting specific recommendations for accommodations tailored to her, I learned that autistic people have atypical reactions to certain medications. The assessor made a big bold note of this to the GP and explained to me that some medications either don’t work in autistic people or have a much higher risk of causing adverse side effects so it’s something to be aware of and mention to a GP or Consultant whenever you’re being prescribed medicine.

Can you take her for a private assessment? GPs are not qualified for this and teachers are hopeless especially with girls who mask.

She is really against needing any sort of assessment - I have spoken to her about getting some help for the things she struggles with and was met with her telling me she has no issues and the problems are actually me and everyone else for all the things we do that she hates

Food has always been an issue - bland and nothing mixed, won’t eat certain things just because it looks a certain way etc and will ( used to ) have mince in one bowl and spaghetti in another as couldn’t bear to have them mixed.
Won’t touch vegetables so this is another concern now she’s veggie as her diet wasn’t great to start with although she is a healthy weight and very into fitness