Are there any parents with girls with Aspergers here at all?

[ICameOnTheJitney]

DD is 9 now and she's always been quirky. She spoke very young and was extremely articulate and expressive...but had selective mutism from between ages 4 and 7...at 7 I changed her school and she gradually gained more confidence.

She would talk to her peers but not any adults who were not in her immediate family.

She has always maintained friendships well and is now quite popular but she's extremely sensitive to words...certain words make her skin crawl is the best way I can put it and as a little thing she had noise sensitivity.

what I'm wondering is how to help her physically....she's just started gymnastics and runs in the weirdest way...like she's holding herself back...she's also got a tendancy to overeat and now has a little belly...she's not fat anywhere else but I'm going to have to crack down harder with crisps etc.

When she first went to her new school she wouldn;t join in at all but now has a good group of friends, invitations and is very happy there...academically she's grown plenty too...but watching her run this evening made me I thought she had come on so much and there she is running like a little oddball!

Is there anything I should do?

Well most of all I think you should give yourself and DD a 'pat on the back' for all the progress she has made - overcoming selective mutism, maintaining friendships, academic progress - sounds pretty good to me!

I can see how your DD's odd running style made you notice her differences again, but to be doing the gymnastics in itself seems great. Sadly at the moment DD 8.5 who has a diagnosis of HFA (our area doesn't give Aspergers as a diagnosis now, DD diagnosed in April) doesn't do any out of school activities, isn't managing to join in school swimming and has recently announced she is not going to any parties .

I can't really answer your query about how you can help your DD physically (as far as we've got is that DD might benefit from a referral to an OT) but I did pounce on your comment that your DD had SM and that she gradually overcame it at a new school. Tell me more please!

Before the ASD diagnosis, my DD was diagnosed with SM at 4. Sadly, she hasn't made much progress at all and only talks to a small number of friends (mostly in the playground) and not to adults outside the family - only a limited amount to a TA when they are out of the classroom. DD has had SALT from an independent therapist employed by the School but I'm not sure the SALT was experienced enough with SM because DD has never got to the stage of 'generalising' speech with peers and adults in the classroom. This term (when the School finally get their act together ) DD has 8 sessions from an experienced NHS SALT who will be setting up a programme and training a key worker and I hope then we will see some progress.

I have a Dd with Asd, which presents like Aspergers. She is very bright and academically has coped quite well at school, although like your Dd she needed a move.

She also has difficulty speaking to adults outside home but with her this mainly occurs when she is stressed or doesnt trust or like the adults.

Nearly all her anxieties are around school and seperation from me.

My Dd3 also has hypermobility syndrome which effects her coordination and balance. she has orthotics to help her.

Thanks for all the comments...Greener I'm more than happy to discuss things on the thread if you can't message me...

Pannetone thank you for the pat...I'm sorry you're worried about your DD at the moment...it's very upsetting isn't it...DD also doesn't like swimming. I can't really put a finger on one thing which helped DD..she was at a tiny prep from preschool up until the end of year 2...and no SALT or anything was suggested because they didn't really do that kind of thing I moved her because it was too small and too comfortable. She wasn't progressing academically and had only 2 friends as the rest of the class was made up of boisterous boys and she's not like that at all.

The changes socially came about over the first year at the new school very, very slowly.

She had an amazing teacher who seeing DD standing on the edges of games despite being asked to join in, decided that she had to help DD and she took herself out and into the playground daily for a couple of weeks (can you believe she did that?) and she organised old fashioned circle games which she made DD and others take charge of....DD eventually got taken under the wing of a girl who was quite loud and confident...and who helped her a lot.

By the time we got to the end of year 4 she had branched out and made more friends. Brownies also helped....and encouraging DD in the things she could naturally excell at.

With the selective mutism she can still tend towards silence when she's not comfortable and I have to be firm...she's old enough now to understand the social rules which I've explained so I will sometimes insist she says thank you or whatever...when she was small I never made her speak...just said things like "She mustn't be in a talking mood today."

Far from being hypermobile she appears to be tight...she can barely touch her toes! Sorry this got long!

Thanks jitney. That teacher your DD had on moving school does sound amazing. Not that it should make a difference when it comes to great teachers, but is the new school also an independent? You say that the prep was too 'small' and 'comfortable', how big are the classes now? Sometimes I worry that it is hard for DD to progress in her (state school) class of 30...

No the new school is an ordinary state primary...a small village one but much larger than the one she was in. There are 32 in her class now...at first she struggled when she went there and I felt awful but they didn't let her hide...they kept hassling her in a gentle but consistent fashion.

I think a big change for DD was joining Brownies...it seemed to do something...I don't know how. I also began making sure DD had no additive food then... see I've slpped about that now and I think the clean diet she was on helped her. Since she was a very small baby, she's been very affected by certain additives...I never looked at which ones but noticed that anything like jelly or coloured sweets made her have meltdown type behaviour so i banned them.

Does your DD excell at anything? I also found my DD gained a lot when I pushed her to enter some art contests and she won one of them...and when she had odd little ideas about how to "improve" certain products (something she often thinks about) , I suggested she write to the manufacturer and tell them... they sent a very serious letter back thanking her for her input...and a voucher for their products and to DD it meant the world as it was some kind of validation that her thought process was worthy. Those are the standout things for me of the last two years progress.

OP, your DD could have been me when I was a child (except I was happier talking to adults than to my classmates.) I have Aspergers btw.

The running thing: poor co-ordination is very common in kids with ASD, my mother used to say I had an odd, bouncy walk; although I was slim and athletic-looking as a kid and so was always picked for running events on sports day, as soon as I started moving fast it all fell apart and I inevitably came last!

I grew out of my selective mutism by age 8 or so, but the poor co-ordination plagues me still - learning new physical skills is really hard for me and I have to repeat moves over and over and over again before I get them right, especially moves in sequence - learning to drive was a nightmare!

Encourage your daughter to do sports, especially swimming and gym, as it will help to "train" her brain to handle physical movement better. This is important for all kids, obviously, but even more so for ASD kids.

Does she have a diagnosis, btw?

Happy to answer any questions you have about Aspergers - I have first hand experience, after all!

Best wishes,

x

C

I have a dd with Aspergers, she is 14 and was diagnosed around age 7.

Callilleach no DX no...when she began at her new school and was still so unsettled, they suggested she get assessed and I was at this time still hiding from the possibility she might be on the spectrum and refused.

I feel unsure about getting a DX...she's very, very like me and I suspect I'm also on the Spectrum but like me, she's excellent at mimicking and quick to work out how to respond in social situations.

I'm not sure what we'd get out of a DX....apart from the knowledge that X happens because of Y sort of thing...she understand what Autism is as we have a few children in our circle with a DX....she knows it's a way of thinking differently and feeling differently but when I explained it further she said "Everyone thinks differently...why are they calling that ASD when each person could have a different label?"

So I'm not sure she'd appreciate a DX!

DD is higly likely to have an ASD. She is a funny little muppet and I love her dearly.

DS also has an ASD and he runs in a very peculiar fashion - sort of chest out leading, very little arm movement - almost as if his top half is trying to go forwards while his legs don't want to.

I have a 16 yr old dd with Aspergers.My advice would be to anyone wondering about getting a dx..definitely do it.It tends to become far more pronounced during the teenage yrs in girls especially.
Secondary school is a totally different ballgame and with a diagnosis support will be availabe from the school.I dont mean accademically but socially.Its very common for girls with As to slip under the radar until the teenage yrs and then just fall apart.
My dd was always simply quirky,had friends,mixed ok,did lots of activities and was very bright accademically.It all fell apart at about age 13 when a huge gulf started to appear between herself and her peers-she simply didnt have the social skills as her friends all of a sudden,had no interest in fashion,boys,facebook etc.She is really struggling socially but with a dx things are much easier as the school are providing good support.
Definitely get a dx-you do not have to use it if you dont want but it will be there if you need it for her.
I would also say that as the teenage girl with Aspergers gets older it is a huge help for the girl herself to know and understand about As and what it means.
DD was only dx last year-up to 2 yrs ago no-one,not even us, thought anything was amiss .

Sorry,posted too soon,but wanted to add that having never had sensory issues,problems with routines, problems with friendships,etc.dd is now socially inept as in if she meets anyone she puts her head down immediately and wont engage with them,cant deal with shop assistants,comes across as being very aloof and stand offish but is in reality just extremely shy,she now hates loud noises,crowded places,loves routines,is very rigid in her thinking,interprets literally and doesnt really get sarcasm etc.
She is brilliant at art and is doing A-level art and loves fantasy and fiction books also.
She goes nowhere outside of school really and has no interest in the normal teenage stuff.
If she had been picked up at age 9 or 10 it would have made a huge difference to her really.
My ds also has Aspergers and was dx at 8 and is now 14.He is coping wonderfully now having been dx earlier.
If you have any concerns at all I would say definitely go for a dx if you can.Aspergers definitely intensifies and becomes more apparant as the child gets older.
Dont let anyone tell you otherwise.

I wouldn't have appeared to have sensory issues either - because I internalised my reactions to them. My obsessions were quiet and private too, and so were my stims (picking my scalp until it bled, for instance, or rubbing two pieces of cloth together, were done in bed at night.) My digestive problems - well, I was so used to them that I never thought it was a issue - I just coped with them - again, in private.

I had two friends only throughout primary and junior school and I now see that those friendships were very shallow ones, but someone looking on would have only thought "oh she has friends she's fine."

I was a very quiet, polite, well-behaved child - to an absurd degree, actually. The teachers, of course, focused on other children, not me, so my issues went under the radar with them, and the same was true with my parents.

The one thing my mother said is that I never ever ever ever talked about how I was feeling to her. With me (and my brother), we do not "refer out" our problems to other people around us. Autistics seem to have lack the ability to understand what and how they are feeling, if you see what I mean.

It took me until adulthood to realise that these things WERE problems that indicated something was wrong with me, and even then it took ten years and more from my nervous breakdown at 24 to my final diagnosis of ASD at 36.

The short version of this: every autistic is different, but girls with an ASD might be very good at hiding it and adapting to it, at least on the surface.

My Dd3 is like that cailleach, she is brilliant at masking her symptoms away from home and keeps her head down at school.

This is hugely exhausting for her, she comes out of school like a coiled spring and has meltdowns at home.

I worry about her mental health and wish she could at least vent some of her issues at school but I dont know if she ever will.

Having her diagnosis has been really good for her and earlier this year she did a course with a SALT all about Asd, what it means to her and how it impacts on her life. It was great for her to gain understanding of herself and has imoroved her confidence in who she is.

She is just approaching her teens which we are quite worried about but we have some support in place now so fingers crossed we will all survive.

Thank you cailleach for such an honest portrayal of yourself.You have very accurately described my dd also..especially the scalp picking(she picks at her forehead) and the very ,very private interests also.I still dont get the privacy and secrecy with this...dd is intensely interested in japanese animation but its all very private and she doesnt like discussing it.
As for diagnosis at 36 .

My DD probably has Aspergers though the GP says it's 'borderline' apparently

Trixy I see a lot of my DD in the description of yours, I worry so much about how she's going to cope in senior school, though her primary school is linked to the senior and they are aware of her difficulties. Her problems seem to be getting worse, or she's finding it harder to hide them.

flossy that is exactly it I think...they suddenly cant hide it any more.Not that they ever 'hid it' intentionally but if I go back 4 yrs I would say there were no signs of my dd having problems with loud noises,crowds,not getting sarcasm or idioms,having other sensory issues,having difficulties with friends etc...Its like it has jumped out of nowhere.We were so focused on ds and his Aspergers we never dreamt dd had it also.But of course ,looking back now,all the little subtle signs were there always but became really obvious when she hit the tens.
Hopefully your dd will get good support if the school are already aware of her issues.

Sorry 'teens' obv.

Hi all when did u start to notice differences in your DD's. My DD is 3*6 and we have just started the process paed says she has some AS traits but school senco mentioned aspergers!!!
She doesn't really speak much at school but her vocab is good spoke early doesn't like change at all gets very upset senco says she's very bright and we just managed to get rid of her stick it went everywhere with her.
She paces a bit but don't think she does it at school!!!
But the most interesting thing is that she also has a patch on her forehead which is constantly picks to honest its a scar now with a scab we've tried plasters but its a short fix how did u tackle it as she's started picking her lips too ?? Sorry for long post X

Skuntoo My dd used to pick inside her ears till they scabbed...when she was about 3 or 4.

She stopped at about age 5 or 6. I used to just try to catch her when she was at it which was after lights out usually and stop her. I explained about infections too...she grasped that they were to be avoided.

DD is so different now to the way she was and has improved so much that I am hoping that she won't find secondary too much of a struggle....though I did.

I did find that cutting out processed food helped her enormously. I don;t know the links if there ARE any but it definitely helped. She's enormously sensitive to colourings and bright food....things like jelly etc. Without them she's so much better.