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SN children

Anyone with experience of girls having Asperger/autism spectrum?

32 replies

turbochildren · 22/07/2013 11:45

My youngest is 2 1/2 years old. She will be seeing paediatrician, speech and language therapist and she will have another hearing test all next month.
She is a lovely girl but markedly different in her behaviour to how her brothers were at that age, and to the other children when we go to playgroup.
She vocalises, but does not talk/say words. She will show what she wants by grabbing my hand and taking me to the kithcen, getting her empty cup to show she is thirsty etc.She does not want to look at people, but warms up to some after time. She likes toys in the colours of the rainbow, she likes megablocks which she will line up according to colour and size, it looks like a caleidoscope in slow motion as she sets them out again and again.
She does usually not like to play with the other children, and will push them away a bit like a 1-year old will do. Last week was a breakthrough as she shared a spinning top with a girl, and also had to share the toy foods in the playgroup pretend kitchen. She does not play with dolls or "making tea" or anything.

A friend whose now grown boys have mild aspergers said this would not be the case for her, but then I have read that autism can be different in girls. Sorry if I'm not using correct descriptions, I'm trying to work out what is what.

Any feedback from parents with experience would be most welcome.

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EllenJanesthickerknickers · 22/07/2013 20:43

I have a DS with ASD, not Aspergers, though. I'd post on the SN children board, there are posters there with girls with AS and ASD who could give you advice. Smile

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WestieMamma · 22/07/2013 23:33

I have AS as does my daughter. I can see similarities with some of the behaviours you describe. My daughter did play with dolls but not in a typical way. There was no imaginative play, it was all about sorting and order. The thing I remember most about her at that age was how intense she was. eg She was fascinated with shoelaces and would spend hours sat on the stairs trying (unsuccessfully) to tie them, or after watching Snow-white she refused to respond to being called anything but Snow-white for 2 years. She took stubborn to whole other level.

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turbochildren · 23/07/2013 06:35

Thank you for responding. Have reported the thread to be moved to the SN board.
Westie, do you mind if I ask how you and your daughter found out you had AS?
She is such a lovely girl, but when at playgroup it is so clear she is apart from the other children. At the water tray they will play making tea, she will feel the texture of the water, the temperature, sort anything coloured into order etc. She is very sensitive and interested in texture. My oldest boy is a bit like this, but she is on a different level. I want to help her to go as well as she can in the world, apart from that her colours and obsessions are fine by me.

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WestieMamma · 23/07/2013 09:32

My daughter wasn't diagnosed until she was 15 because the 'experts' couldn't see what I could see until the teen years when it became obvious to anyone. I knew something was different from when she was 2 ish. Apparantly this is very common with girls. I was diagnosed shortly afterwards. As she was assessed I realised that all her respnses to their questions were exactly the same as what mine would be.

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RippingYarns · 23/07/2013 10:09

Hi OP

I have a DD with ASD, and can not possibly say whether i think your DD does too, but what i will say is if you have any concerns/doubts about her development and social interactions, take them seriously. Note them down, read up what you can about autism and girls and if you still have concerns, go to your GP - with your lists - and ask for a referral for further assessment.

The way that girls are different is they are extremely good social mimics. They learn very quickly how to emulate their peers, thus masking their autism.
Their autism doesn't go away, it isn't more mild than boys, they just learn how to hide it in public more effectively.

The older they get the more self-conscious they are, this can cause huge self-esteem issues, poor self image, they will withdraw from social groups yet be called shy or introvert.
The older a girl with autism gets, the more masking she will develop, and so her autism becomes more deeply hidden, many un-diagnosed girls grow into women with huge issues such as anorexia and can find themselves in more unhealthy relationships than NTs. (there are facts to support this Sad )

The onset of puberty can be a huge trigger for girls on the spectrum too, the need for control and rigidity is totally taken away as their bodies change...I know a great deal of parents who say their DDs seemed fine with their autism until BOOM!

If your DD is on the spectrum, early intervention and educating yourselves as parents (and hopefully her educators) will help her navigate her life more successfully, don't leave it until she's really struggling to have it confirmed or not is my advice.

Thanks

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KateSMumsnet · 23/07/2013 12:08

Just going to move this to SN children at the request of the OP.

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turbochildren · 23/07/2013 12:09

Yes, she has all these appointments lined up, because I had such a feeling something is different. This was since well before christmas, and since then the difference has become alot more marked. The others will talk, interact, roleplay etc. My daughter will push children away to get to what she wants, not ask or say anything, just try to get by and if that doesn't work she will push. She never says hello or goodbye, but makes humming noises, laughs and loves listening to nursery songs. She doesn't join in but wants me to do the movements. She doesn't seem to mimic social behaviour, at least not yet.
I have read about autism being diagnosed much later in girls.

I wanted to post here to find out how other girls who have got the diagnosis behave, and what sort of educational strategies there are.

Thanks Ripping, I really want to do what I can for her from as early as I can.

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turbochildren · 23/07/2013 12:11

Thanks for moving it, mumsnet. I didn't even realise there was a SN board when I first posted.

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ArthurPewty · 23/07/2013 12:14

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RippingYarns · 23/07/2013 12:31

Well, welcome to MNSN Smile

I have learnt so much from reading and posting here, everyone's experiences are different, but they have all helped me.

DDs speech was very good from the start, but it meant little to her IYSWIM. Her first words were objects, not people's names, so her first interactions with us were very frustrating for her as she didn't/couldn't direct her needs at us effectively. We had some horrific tantrums, which i now recognise as autistic meltdown, DH and I were ready to call in SS for family support as we couldn't handle her behaviour at all.
We went to playgroup, but really that was for my benefit. DD never interacted with other children, she used to run and hide behind me when they approached her, all she wanted to do was paint and play with dough.
We went to our GP and both of us just sobbed out way through the appt.

She still talks with her back to us, will point or glare at things, but now we know what's going on for her, we try to remember to adapt our language and thinking accordingly. On meeting other DCs she normally introduces herself very formally then either wanders off or stands still waiting for the other child to do include her in their games. Being a much younger child than her siblings has helped her accept that sometimes your own company is good.

It's hard work, for her and us, and as she's getting older (she's 6 now) she's realising for herself the gaps in her social skills. We micro-manage her still, coaching her with conversation and interactions, and she's getting it, slowly.

As for autism being diagnosed later in girls, I think (and so do a lot of other parents i know) this is because the window in which their autism is apparent is either when they are very young and it's put down to parental neurosis, or when they reach puberty.

I'm so glad you've been on the ball and recognised your DD may need assessment.

You could be changing her life Thanks

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routineandrules · 23/07/2013 13:55

As others have said it is quite hard to get a dx for your child. I first noticed differences in my dd when she was 18 months old. I visited many proffessionals who though I was neurotic due to her being my first. But 4 years later she got a dx of asc. It should be aspergers but they are not calling it that anymore.
Make a list of your concerns for the appointments as its very hard to remember everything once you are there.

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turbochildren · 23/07/2013 13:58

It's good to have the feedback! The following weeks will be full on with summer hols and appointments.
I have two boys who are at school, I have told them that their sister is a special baby/littlegirl now so we must be patient if she doesn't want to hug or play.
I feel i was very patient, the not speaking was the first thing and many people said things like, oh she's only little. Well meaning i know, but you do then feel like maybe your making a fuss over nothing. I had the others to compare to, though, who both started saying words around 1 year.
My oldest was a bit like that, but he has developed into quite a sociable chap.
Another issue was there's been quite a lot of verbal abuse and violence in the home, which especially my mother believes made her defend herself by not developing, iyswim. Luckily that is over for 4 months now, and she is happier (we all are!). I see if i raise my voice to tell off the boys she will look at me with her little face and cover her eyes with her hands. If we have a "battle" when the boys are misbehaving at bedtime she does not like it, and did cry on two occasions.
It is trying to work out if she was made like this by the situation in the home, or if it is a part of who she is and it got worse by the circumstances.

What were the things you noticed as wrong, Arthur?

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ArthurPewty · 23/07/2013 17:00

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ArthurPewty · 23/07/2013 17:01

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turbochildren · 23/07/2013 18:12

Thank you Arthur. I've just found some stuff online which describes her very well.
(I took a test online too, which may not amount to much, but it had some interesting questions. My own world fell apart when I lost my routine when I was younger, no traumatic thing, but it fell to pieces and I developed anorexia for no apparent reason except onset of puberty. But that's just speculation, and I'm doing fine now.)
On a journey of discovery here, so please excuse if going overboard with it!
So she may well have inherited it, but that could be a good thing as I can use some of own experience to help her!
I will

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autumnsmum · 23/07/2013 18:25

My dd2 was diagnosed with autism aged 2 years 10 months so girls aren't necessarily diagnosed later . She doesn't mimic socially and has some very repetitive behaviours

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ArthurPewty · 23/07/2013 19:26

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RippingYarns · 23/07/2013 19:35

DS2 (mid 20s) is having assessments now too, he always struggled at school, has few friends, gets very easily overwhelmed, has massive sensory issues over clothes, limited diet... DS1 was often called 'aloof' and 'nonchalant' by some of the more friendly teachers, others just gave up on him

since DH is not my DSs father and if the link is genetic, then i must be it, but since learning more about DD, we reckon DH's DM is on the spectrum too. her perceived bluntness and stubborn streak (amongst other stuff) could well be AS.

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ArthurPewty · 23/07/2013 19:40

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insanityscratching · 23/07/2013 20:04

I have a dd diagnosed with autism just after her second birthday as well as a son who is eight years older than dd and was diagnosed at three with autism.
I wouldn't fit an autism diagnosis myself and neither would dh I don't think (and the dc's paed agrees) although he has a few traits.
Ds and dd are like chalk and cheese and always have been to be fair. Dd conforms to social pressure where ds couldn't give a toss. Dd is sociable whereas ds is very introverted and dd is far less rigid and obsessive.
At two and a half dd didn't really play at all she'd carry objects and pair things up (ds was the one who made lines) but that was about it. She liked pens and paper and books though.
She didn't speak until much later and acquired a huge vocabulary through echolalia whereas ds picked up single words slowly. By seven though they both had normal sounding speech.
Keep a note of dd's development as you will be asked details repeatedly on the path to diagnosis.

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turbochildren · 23/07/2013 21:00

I had to smile at the mil being spectrum embodied. :)
I just hadn't really thought about me having these traits in this way until recently. When a friend described his son with mild asperger (now grown up) I thought what he was describing sounded so very familiar in many ways. When Ripping mentioned the anorexia bit, I did start to think, as it was so inexplicable.

My daughter does the carrying around, and lining up, hand flapping, sideways glancing etc. She does look at me though, and understand when there's a quarrel etc. Her caleidoscopic "art" is fantastic.
I will definitely write a list for the appointments.

Sensory issues over clothes and the diet thing describes my oldest. Social norms also seem to escape him somewhat, but he compensates by being quiet at school and very good at drawing.

My middle boy is very different from them both.

I'm going to have google echolalia :)

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Kirabelle · 24/07/2013 02:20

Another one here with a dd diagnosed only at 15Shock.We never realised or picked up on it until she was about 14 really.And then it was only because ds was diagnosed with Aspergers also at 10.Have since realised that dh is indeed also on the spectrum.Sigh!

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turbochildren · 24/07/2013 07:36

I don't mean to pry, but how did you start noticing when your daughter was 14, Kirabelle? What were the things you looked at that made you consider it? Maybe it's more common than what I think?
For me, a diagnosis for my daughter would mean help for her at nursery and school, and for me to look for strategies to help her at home. Come to think of it, this could possibly benefit the oldest one too. I will mention it at my daughter's appointment, to end the speculation!

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FutureMum · 24/07/2013 12:04

We noticed just before DD was two, mainly on the basis of a conversation with a friend and the 2-year review leaflet listing milestones. She was looked after at home at the time and we are first time parents, had no real knowledge of what to expect in regard to speech, but had noticed that after 18 months a lot of her words/sentences were used once only/ disappeared. I raised it with the HV but she advised to wait and see, which we did and I now regret, although we did put her into nursery straight away and took her to rhymetime etc up to three times a week.

She still babbles a lot, esp. at home. She uses words/sentences only once, her attention span has improved (but only in what interests her).Displays a sense of humour and is mischevious and very, very inquisitive. She has a huge understanding of language and is very sensitive to our tone/words (hates being telling off and will get upset easily by it). Loves being around other people esp children but will not play with them. Gives lots of eye contact and smiles,yet despite this mixed picture we were told at the diagnosis that she may be half way up the spectrum (we expected her to come more under high functioning.) We won't know for sure until she's older if she has an accompanying learning disability, which is my biggest fear, as I want her to learn and develop as much as possible.

In your experience, do most children with autism (excluding Aspergers) develop a learning disability? Also, we have 1 in 20 chance to have a second child with ASD - as TTC. Have you had any families where only one of the DC has autism?

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Kirabelle · 24/07/2013 13:05

Of course you are not prying-she was always an 'odd' child and never seemed to want to play normally like other kids iykwim.For example she hated going to parties,going to other kids houses,wouldnt play with another child that would come over to play,preferred to play on her own.
She had very intense interests like she loved having imaginary conversations say where I would be with her and we would have 2 soft toys and start imaginary play with them like 'hello mr bear how are you today?' O Im fine mr dog.Im just going to the shops' ....etc BUT it was all she wanted to do all of the time really.This was at the age of about 3 and then she was interested in dogs BUT looking back again it was rather extreme like taking the same encyclopedia on dogs from the library for months at a time,wanting her bedroom decorated with pawprints ,etc.She hated school assemblies,concerts etc. We didnt pick up on any of this at the time,just thought she was a bit quirky.
She was fine academically but was always very shy.
Then when she hit about 13/14 the shyness became a much bigger problem.She is almost socially inept really.Cannot relate with peers,cannot deal with a shop assistant, we are going to the cinema later today for example but we are not going to our local one as she is afraid of 'seeing someone she knows there' Hmm.
It came to light with her 6 mnths ago as I had to go into the school as she was being bullied by some other girls who were ignoring her,laughing at her etc. The head and her form teacher then realised when speaking with her about these other girls etc that she couldnt even speak up for herself,give them an account of what had happened etc.They suggested we have her assessed and she got an immediate dx of Aspergers.
She was so quiet she just slipped under the radar all along.
She is very bright,brilliant at art and is carrying it on for A-levels now,very articulate but will freeze on the spot if someone speaks to her that she does not know well,will look sideways at them with her head and eyes down etc.
My ds on the other hand does a lot of hand flapping/rocking when excited etc and she does none of this.Her current 'intense interest' is in japanese animation and all she does is watch these videos/music etc.She has no interest in fashion/facebook/makeup /boys etc and she is almost 16 now.
Overall, I would say I cant believe I never realised with her and I really wish she had been picked up much earlier.
The fact that you have already realised with your dd puts her at a huge advantage.She will get the support she needs all the way through now.I can see an enormous difference with my ds who was picked up in school at the age of 9 and is now 13 , compared to dd who has done her gcses and is only now getting supportSad.
Your dd will be fine OP-dont sit back and 'wait and see' though-one thing Ive learned with schools,professionals is to always keep on at them,chase things up yourself and keep after them-you are your dd's only real advocateSmile.
So sorry I have gone on so long-I got a bit carried awayBlush.

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