Girls with ASD - but only starting to 'present' around age 7?

[CaptainSubtext]

Sorry this probably isn't the best place for the thread but I wasn't sure which SN/health board would be right.

I am really, really confused and worried about my DD. Sorry this might be rambly and confusing. Basically she has been really struggling for over a year now. But I can't really put my finger on what is going on IYSWIM?

I realised from when she was very young that she is very social, has fantastic empathy etc and I wasn't at all concerned (unlike my DS who had an ASD assessment due to communication issues). But then a few years ago - in fact thanks to MN - I realised that both my dad and I almost certainly have ASD (not diagnosed yet, long boring story) and that everything I assumed about how autism presents, especially in girls, was totally inaccurate.

Still for a while I wasn't concerned, but then she started having trouble at school. She started getting anxious, to the point of panic attacks, and not being able to 'switch off'. Moving to the huge junior school made it loads worse but neither school could really help TBH as she was keeping it all in and exploding at home or having sleepless nights, so they didn't see a problem.

She has what I really think are meltdowns rather than tantrums - she does have the latter sometimes but I can see a difference when she is totally out of control and she really isn't just trying to get what she wants.

She has major trouble adjusting when something changes from what she expects - for example if I ask them to have a bath before dinner instead of after it leads to huge panic.

As I said, she is very social, and has some good friends and plays with them well (the problem sometimes is that she is overpowered by her friends), but she can't manage more than a couple of hours really. She struggles with crowded places. Anything like a birthday party will like clockwork lead to a meltdown that night.

She is now homeschooled as we took her brother out and she asked to join him (I was surprised as she does have friends there, but I think it was the right choice because she was too scared to go some days and I could see she was overwhelmed). She's got a better social life now because we can balance it IYSWIM and that side of her anxiety has pretty much disappeared, and she hasn't had a (clearly stress induced) migraine since she left. It's the 'letting things go' or problems with changes that remain, and she still isn't sleeping. There are a few other things about the way she thinks (being literal etc) that add up to me thinking all is not right.

Anyway we never got anywhere with the GP because they insisted on getting a referral from the school nurse, but said nurse wouldn't do it because as I mentioned earlier DD never showed any problems at school. So now I have no idea what to do. I have a feeling a GP would laugh if I said "I think my DD may have ASD" because they don't see what we do at home IYSWIM. But the fact is she is not 'right', she is miserable and anxious. So I am thinking either ASD or some kind of anxiety issue (I have this too, OCD according to psychiatrist but I know it often goes hand in hand with ASD anyway) and... just AAAARGH. I don't understand how I've gone from thinking she was totally neurotypical and happy, to wondering what the hell is wrong with my little girl and why I can't help her :(

[DishwasherDogs]

I don't know, but my son showed few signs of anything until he was 6, then changed overnight. I have been assured several times that this is sometimes how it goes - the child can hide the issue until a certain point, when other children then develop quicker and life becomes more difficult.

Could you outline your concerns to your gp, take some printouts that show how common it is for dc to behave differently in school and home, and ask for a referral to a developmental paed?

[DishwasherDogs]

NAS different behaviours

[DishwasherDogs]

www.thepdaresource.com/files/Dr_Luke_Beardon.pdf

[DishwasherDogs]

autismdigest.com/girls-with-a/

Sorry, can only post one link at a time!
Some of these might be useful.

[technobabble]

You've pretty much described my 7 yo DD. She had epic toddler tantrums which she never completely grew out of, and has always been a little eccentric.

But apart from this no issues until she started school, despite being in nursery since 9 months old. She really struggled to settle into school and anxiety and sleep became an issue, but at first school put it down to emotional immaturity. ASD was first mentioned by school when she was in Y1, but not seriously until she was 6 and in Y2. By then it was becoming increasingly obvious she had difficulties. But it was still a massive shock for DH and I and we refused to acknowledge it at first

With hindsight I guess it was obvious from the start, certainly by age 3 or 4 but we didn't have a clue about aspergers, especially in girls.

I've read that girls are better at masking to some extent, but when social expections exceed their capabilities, that's when their difficulties start to show. And obviously the strain of constantly masking leads to anxiety and mental health problems.

[Doubletrouble99]

As you are now home schooling then surely the school nurse thing doesn't apply. If the G.P. won't refer I would insist on a second opinion.

[CaptainSubtext]

I'm really hoping the GP will accept that we can no longer get a school referral - I've spoken to another local HE mum who is having trouble though, as the symptoms (ADHD) have to be observed somewhere besides the home or something.

Thanks very much for the replies it helps to talk it through!

Yes I think maybe the huge increase in demands on DD was what has increased her problems. It seems similar to what happened to me - I was working part time and when I got a promotion to FT my anxiety and social dysfunction (which made me even more anxious because I knew I was not normal) so much that I got physically ill.

I'm having major trouble even getting an appt at the moment, but I'll print out the links above is there anything particular I should be mentioning? I'm not sure if I should just repeat what I said last time about the anxiety and hope that a specialist will take it further anyway. I'm thinking the first appt should be without DD?

From a selfish point of view I am also quite worried that when I say she is still really struggling they will just say "well you shouldn't have taken her out of school" :(

[CaptainSubtext]

School was different for me - I didn't make friends really, and was very much the 'little professor' stereotype. So I think that's another reason I didn't really consider DD having similar issues, because they seem to present very differently - apart from the anxiety which she clearly gets from me :(

[IonaMumsnet]

Morning folks. We're going to move this over to Special Needs Children in a moment for the OP.

[StatisticallyChallenged]

I've recently been diagnosed with ASD as an adult, and also have a DD who I am watching like a hawk so I understand where you are coming from!

My DD, like yours, seems (at 4) to be fine socially, not to struggle with empathy etc. But I am seeing small signs which concern me - noise sensitivity (she hates hand-driers, good processor, hoover etc), very routine driven so will always use exactly the same phrases at certain times, bedtime is very specific...It's like she has learned that specific responses are appropriate at certain times but I'm not sure it's fully instinctive. It's really hard to explain!

When I look back at how I was as a child, I seemed OK socially at her age I think and my mum agrees. By the time I was in mid primary school though this had changed a bit and I didn't really sit well in any of the friendship groups, and by the time I left I didn't really have much in the way of proper friends. High school was worse, lots of that awful low level bullying that girls do so well - I think it's quite telling that I only have one friend from those days. I was also very much the little professor type by later in primary school - my P6 teacher remembers me sitting reading books about the Russian Revolution.

I kind of feel like whilst I was ok socially at a young age my social skills didn't develop as well as my peers and eventually I just couldn't quite keep up. I don't think, even now, that 5 year old me would necessarily have got an ASD diagnosis. 10 year old me, more likely and I reckon if they took a good look at 15 year old me it would have been much clearer. So I do feel that it is something which can become more apparent with age.

Sorry, not sure if that ramble helps at all!

[bjkmummy]

i have two sons with asd - I have boy/girl twins - thought girl was fine and would tell anyone who would listen she was fine - but then it slowly fell apart, couldn't cope in year 4 so moved her to a tiny school and that's made things worse not better - friends gently tried to tell me to open my eyes and then shes was dx with dyslexia and I thought that was it but then the dyslexia teacher gently made comments and things came to a head in year 5 and I paid for her to see a SALT who said she clearly had asd - I also then took her to well know paed who dx girls in London and she also agreed with the salt so we ended up inadvertently going the private route - at least saved us years of being passed around from pillar to post and our concerns were listened to. if we don't get her the secondary placement we are now fighting for then we will home educate her.

have to agree also that as a 5 year old people would have thought I was made to say she may have asd, now at 11 year old blindingly obvious (she was dx at 10) also as she was a twin I guess it would have been dismissed as copying her twin but he is the opposite part of the spectrum to her and mothered him - he then left the school to go to a specialist school and it all fell apart for dd which im told is quite common with boy/girl twins - boy will be picked up first due to the more behaviour they show and the girl will try and blend into the background.

[CaptainSubtext]

Thanks Iona :)

[Toooldforthat]

This is so interesting. My 10 yo DD has SPD and now we think she also has mild ASD/Asperger. People are usually dismissive of this possibility because she is functioning, but her social skills are rubbish, her anxiety levels are high, she cannot cope with changes, her organisational skills are poor, melatonin is helping her sleep, she ticks so many boxes.

[CaptainSubtext]

Thanks for the replies - it is really helping to read through your experiences! It's really making more sense.

Still I don't know if it's bad enough to get a Dx anyway, because she functions so well in many circumstances. Sadly going private is not an option (I have also heard locally that a private Dx is often ignored anyway when you try to get help, which is horrific really ) but I want to get some help for her if I possibly can. Regardless of whether it's ASD or another cause of anxiety, it needs sorting.

It's very reassuring to hear that it can sometimes not become apparent until later.

[Toooldforthat]

Would love to know how to get her assessed and diagnosed properly without having to hit a wall because of a stupid/ignorant nurse or GP though. We are based in London, any tips welcome!

[Toooldforthat]

Would love to know how to get her assessed and diagnosed properly without having to hit a wall because of a stupid/ignorant nurse or GP though. We are based in London, any tips welcome!

[CaptainSubtext]

What's SPD please tooold? And also did you get melatonin prescribed? DH (runs a pharmacy) says this can happen although I've heard it is very difficult to obtain.

[Toooldforthat]

SPD is sensory processing disorder. It is usually a co morbidity with autism/Asperger or can stand alone.
My DD has and still have massive tantrums about socks and clothes usually, they have to be comfortable or she looses it big time. Concerning sleep, since she was a baby she would lie awake for ages and would not get to sleep until 11pm - midnight, her head racing. I researched melatonin on the web and there was lots of conflicting advices. In the end a friend of mine who lives in the U.S. said her son with severe SPD was taking very low dose of it (0.1 mg) and it changed their lives. In the U.S. you can have it over the counter though, without prescription, so I tried it and for us too it made an amazing difference. Being less tired is really beneficial for her mood swings and her ability to cope. I also give her omega 3 supplements, and she seems happier.

[Toooldforthat]

SPD is sensory processing disorder. It is usually a co morbidity with autism/Asperger or can stand alone.
My DD has and still have massive tantrums about socks and clothes usually, they have to be comfortable or she looses it big time. Concerning sleep, since she was a baby she would lie awake for ages and would not get to sleep until 11pm - midnight, her head racing. I researched melatonin on the web and there was lots of conflicting advices. In the end a friend of mine who lives in the U.S. said her son with severe SPD was taking very low dose of it (0.1 mg) and it changed their lives. In the U.S. you can have it over the counter though, without prescription, so I tried it and for us too it made an amazing difference. Being less tired is really beneficial for her mood swings and her ability to cope. I also give her omega 3 supplements, and she seems happier.

[AntiquityIsDotDotDot]

I think rather than just saying anxiety to the doctor, which can of course have multiple explanations, I would have a list of the things she gets anxious about - like you've already said routine change and crowds. Also I would mention being literal. In fact, what I actually would do would be to look at the triad of impairments for autism and see what indicators she has and take a list of them all along!