High functioning autism in girls

[Sunshine200]

Hi
If your daughter is diagnosed with ASD what is it that prompted you to get an assessment? I’ve worried about my daughter on and off for her whole life for subtle reasons, and the lockdown has bought out some more extreme behaviours. Interested to hear others’ experiences. Thanks

I don’t have a diagnosis, but I have a 7 year old who I’ve suspected as being autistic for a few years. Most people are totally taken aback when I suggest it to them but yesterday after an ‘incident’ at school her teacher said she agreed that Dd has a lot of autistic traits and that I should book an appointment with the gp to start a referral. Up until this point I’ve just been told how bright, mature and sociable she is.

My concerns include...
Sensory issues with clothes
Sensory issues with food
She’s very good at articulating her own emotions, and can recognise how fictional people would feel in different scenarios, but she cannot apply this to others in real life situations. It’s like she understands only on an intellectual level.
She’s very sociable and makes friend quickly but she can struggle to maintain friendships and she gets very intense with people.
She struggles to play in groups although she is ok on a 1:1.
She mimics people and acts differently depending on who she is with.
She has set ideas on how people will behave based on things they have done before and she finds it confusing when they don’t do/like what she expects.
She can sometimes come across as being rude to people and she doesn’t always get how she’s been rude, but when I explain she then obsesses about it and asks about the rules in different situations.
She struggles with transitions - especially endings.
She gets obsessed with things and can use them to define herself.
She reverts into a fantasy world when she’s upset.
She’s a perfectionist and doesn’t like getting things wrong.

I’m sure there are others that I’ve missed. It feels a lot as Im writing it down, but it’s quite subtle.

Thank you, there are definitely some similarities here with my daughter. They are the things that I see but teachers probably wouldn’t notice. The perceived rudeness is one, great with her very best friend, but it sometimes feels awkward when others try and chat to her (I end up stepping in and chatting to them instead!) She also changes depending who she is with and does things that are very out of character. Also sensitivities around clothes and a limited diet. She has also developed school anxiety but is dyslexic which could explain some of this.

It’s so tricky isn’t it.
My Dd doesn’t show as much in school either - although the teacher has always described her as very anxious.
How old is your Dd? What do her school say?

She is 9. She is very anxious too, and has self harmed (arm scratching). The school haven’t been great at all. They didn’t help with the dyslexia until I got a private assessment. They put it down to anxiety and dyslexia, but they don’t see her socially or at home. It is hard when the other things are quite subtle, it’s just when you add them at together that a picture builds up.

Oh bless her. Dd did similar in lockdown 1. It’s so heartbreaking isn’t it?
Sorry your school aren’t being helpful. Have you been to your gp yet?
I was wondering whether to go private for an ASD assessment actually as it takes so long otherwise and dds current teacher does seem on board. It would be good to have her as the one who fills in the school assessment.

Yes I’m considering a private appointment too. Might ring a helpline to see if they think it’s worth it as it’s so expensive.

It’s horribly expensive isn’t it. I’m not sure they’re always recognised either. I’ll need to double check that.

I rang our drs surgery today. I told the receptionist that I wanted to start off an Asd referral for Dd. She checked whether Dd had SENCO involvement (which she sort have does) and I mentioned that her class teacher had recommended making the referral too. I’m not sure they’d have let me get any further if I hadn’t been advised by the school.

A gp called me back after a couple of hours and we chatted for about 15 mins about my concerns and schools concerns. He could see from Dds notes that she has had SaLT involvement (really recently through school for social emotional communication) and again he asked about SENCO and any other agency involvement.

So now I just have to wait. Dr said it could be months before I hear anything back now.

That’s better than the service I got from my doctor - I was told to do an on-line test 😨

Oh no - that’s awful. When was that?
Did they direct you to any particular test or was it just “look on line” kind of advice?

It was just a ‘find one on-line’ and look up on the internet how to manage anxiety!

@Sunshine200

Hope you don’t mind me resurrecting this. My Dd has just been diagnosed and I felt much like you, that there were subtle reasons. Some things didn’t apply and others did. I found a really useful list online that I could share?

I paid for a private assessment because of the long waits and lockdown etc has just made her life 100 times harder. I was lucky enough to be able to take it from some savings.

My concerns were:
Sensory: clothes, smells, noise, FOOD (massive problem)
Social: not making eye contact, not able to to and fro in conversation, difficulty making friends, v shy, finding everyday social studies difficult
Huge anxiety over change and school, sports and games.
Verbal and physical tics

There is probably more, I’m just overwhelmed at the moment as only just got diagnosis. I think having got this far (almost 13) she probably could have made it to adulthood and coped but every so often she encounters someone who finds her disorganisation or her issues with food to be a huge problem and this seems to set back her progress by a huge amount.

Her dad didn’t necessarily agree there was an issue and school didn’t pick up on it. But he isn’t empathetic and the schools have never seen a problem with the passive, quiet, rule abiding, high achieving girl. But I saw a girl crippled by anxiety.

Hi. Thanks for your reply, we haven’t moved any further with ours. I guess finding out is bitter sweet, but at least you can get the right support now, and know that you aren’t imagining things!

What is your daughter character like when relaxed at home?

My daughters dad doesn’t think there’s an issue either, but is also not very empathetic!

How much did you have to pay for your assessment and did your daughter find it stressful?

Thanks

Hi

In an absolute nutshell, I personally believe that if life is challenging on a daily basis (for the child themselves or family members as a result of differences) beyond the norms of modern day society - seeking answers/help can only be beneficial.

My DS was diagnosed at 4 because so many of his behaviours were both dangerous and causing our whole family
daily challenges. Knowing my son wasn't 'naughty', or that we weren't failing as parents, helped immensely and as a result (when the right strategies were put in place at home) he is now (8) doing brilliantly, and we know what to do and when (most of the time .)
Would he receive a diagnosis now his needs are being met? I'm not sure. But that's it, his needs are being met and life isn't desperately hard with him.

My DD, a very different story. Life IS desperately hard (again hence we sought a diagnosis) and will likely remain so until her needs can be met (and unfortunately for us the holes are within the school environment, and things won't get easier until she has the correct provision.)

At home she doesn’t exhibit as many of the concerning behaviours as she is pretty relaxed (and we make allowances left, right and centre!). For example she can make eye contact with me and will joke around.

It was 2k. She didn’t find it stressful beyond the initial meeting part when she was nervous and extremely uncomfortable. I told her what would happen and why I thought it and she actually told me a few things I didn’t know which were relevant. The psychologists were kind and gentle and put her at ease. And it was time off school!

My dd 9 has just been diagnosed too. Main issues are social and communication. The senco lead hasn't been helpful at all, initially I thought she was lovely but during a meeting when I gave my opinion on what I felt was wrong with my dd her attitude changed. She used to take my dd out of class one day a week to talk to her but hasn't done so since our meeting. She didn't even acknowledge my email when I sent her the autism diagnosis from the hospital! My dd dad doesn't understand why I got her diagnosed as can't see any great issues with her and he was like her as a child ! So i battle on alone !!