What was signs of asd in older girls?

[schoolissues1234]

My daughter is 9 and I’m questioning whether I should be looking at getting her assessed for asd.

She is a lovely girl but there are a few quirks that are starting to feel a little age inappropriate.

she is extremely fussy with food and struggles to try new things.

she struggles in some situations (for eg a transport museum this weekend) where she starts crying and saying she wants to leave.

she spins a lot. She also sings all the time or dances about. She was a mad climber when she was younger and was always on her head doing headstands etc.

she doesn’t cope well when plans change. For eg if I say I’m bringing our car to school and it’s a nice day so I decide to pick her up on foot she will break down and cry in front of her friends with no embarrassment.

she has nice friendships though and she does do a lot of imaginative play on the other side of things.

she is very shy around new people but very happy and comfortable with people she knows well and family.

she doesn’t always answer to her name and seems to ignore requests (time to get out the bath etc).

she reads all the time, total book bug and can play with her toys by herself
for long periods of time.

she has weird sensory things. Like wanting to put her hand in our mouths when she’s falling asleep (we don’t allow this any more!)

she does well in school, although she is dyslexic so struggles with spelling.

Thank you @waterrat

And I too would not rely on a class teacher to prompt for an assessment or recognise autistic traits in a girl, some teachers may be knowledgeable but the vast majority tend not to be. That's been our experience.

Our kids were so rule abiding and also academic that they never raised any concerns for any of their teachers. Ever. It was only in their teens as they started to fall apart emotionally, mentally, and they received their diagnoses that their needs were recognised by their school.

As university aged students now, my kids have made friends both during secondary school and now at university. It's not always plain sailing, but that could be said of neurotypical people IMHO. And I know undiagnosed ASD adults (who have diagnosed kids) with friends, fulfilling lives, who go on holidays, hold down jobs - they're no different to anyone else. I don't believe that ASD will necessarily hold a person back, I definitely can't think like that in relation to my own children.

@motherofawhirlwind gosh I am so sorry, that sounds really hard for her and you. It's such a challenge creating the right environment in which they can learn. I've ended up paying private school fees so she can be in a small class environment with just girls, which is painful as a lone parent, I basically have two mortgages.

The adhd medication can be a little trial and error but we found one that works that she only has to take on school days. I really hope it works for your DD.

@CoolBeanie I found your post really useful and well described. My DD has similar presentation, and funnily enough, this year joined a music theatre group and has turned out to be a decent actress! No doubt all that masking was great practice.

She also has an anxiety response of 'fool' (alternative to fight, flight, freeze) etc. That really confused us when she was 6 or 7 and running round wildly, pulling covers off the beds and cackling, as a response to not being able to relax enough to sleep.

OP - in my experience you need to learn as much as you can yourself and save up for a private diagnosis. If you wait for the NHS to help you, they're unlikely to get to it before the secondary school transition (if at all) and that's when problems often occur.

We've had no issues with the report being private and it's just as well - we've been trying to see an NHS paediatrician since Feb 2020 and still nothing.

Regarding teaching, the experience at home has helped me at work, but the other way round, not so much, although I did work with a terrific SENCO for a while.

It is correct to say a lot of teachers and schools have no idea. There's very little expertise.

My daughter likes drama clubs, but is shy / freezes when it comes to performing.

My daughter is 11. She hasn't been diagnosed yet but has been on the waiting list for 18 months waiting to see a paediatrician with suspected asd. We suspect because:
Noise sensitivity
Repetitive question asking. The same question 10-20 odd times a day
Very literal
Does not understand 'sayings' or jokes
Very rigid thinking
Perfectionist
Strong sense of right of wrong
Can't cope with being late to school.
High levels of anxiety.
Struggles to fit in with a group. Loves to have a bestie
Doesn't like any food that is chewy
Likes comfy clothes, won't wear anything that touches her to tightly
Won't have hair brushed
Hates new things
Hates transitions
Scared of puberty

Absolutely 😊 it's called Not fine in school : family support for school attendance. You will get incredible advice on there .Lots of parents in the same position or who have been xx

Just an observation a diagnosis doesn’t change much it’s can just be the start of securing support. You can still ask school for “reasonable adjustments” now and make as many parenting supports as possible at home… the bit of paper does help but it’s still hard day to day supporting your child. So definitely do as much as possible to read & understand the things / adjustments your child needs Now and keep badging school with these needs.

Following my comment our DDs “diagnosis” cost £2k, aged 10, but that piece of paper has resulted in the secondary school transition being easier to ask for adjustments and get them enforced. We didn’t have a family holiday that year as used the money but worth it for improved family harmony ….. as her needs have been better met, so a small reduction in meltdowns at home. It’s still very hard going though.

Same here, my daughters ADHD medication is really helping her, she can focus and sit still through a whole lesson now where before, could only manage maybe 5-10 mins. She is also much more quieter too and much less likely to interrupt or shout out.

wish I had got her diagnosed sooner.

Yes to the diagnosis helping . We paid for a private assessment when dd was 17 and had struggled with depression , anxiety and anorexia during Covid and some time before .

She is now at uni with a funded weekly mental health support worker and all sorts of other benefits that go with the dsa part of the student loan .
She is also allowed to avoid speaking out loud and overall it's helped her understand herself and that she isn't a 'weirdo' that doesn't fit in .

She presents very NT and is very bright so it was always a very grey area but overall it's been beneficial .

We have paid out so much for CBT and other therapy , I was happy to pay it if it helped her .

@Phineyj Please can you explain more about the anxiety response of 'fool' (alternative to fight, flight, freeze) etc. and show me where I can read more about this. I tried a simple Google but it didn’t lead to anything useful.

www.sallycatpda.co.uk/2021/09/the-f-family-of-7-adrenaline-responses.html?m=1. If you skim to the end of this, it describes it really well.

This is the website of the PDA Society, which has has a lot of helpful resources:www.pdasociety.org.uk/life-with-pda-menu/family-life-intro/distressed-behaviours/.

As you can see on the second link, most people would recognise that as distressed behaviour, but it's harder to recognise when it presents the way Sally describes.

Thanks @Phineyj