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Anyone with experience of girls having Asperger/autism spectrum?

(33 Posts)
turbochildren Mon 22-Jul-13 11:45:52

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.

turbochildren Thu 25-Jul-13 08:32:24

No, not off topic at all Kirabelle, it's all these things that are important to consider. Life is not just academic results. When moving country I'm hoping that a school system that focuses more on social cohesion will benefit my children. Of course, it would be great to have both!
Some things you mention about your daughter I would usually just think of as eccentric behaviour, but then I remember how impossible it was for me to call places I did not know. My mum could not understand it, but to me it was impossible to do. And I would be so shy, yet do really eccentric things that ofcourse drew a lot of attention. It is not a good feeling.

To be fair to my oldest, he is quite sociable, just a bit "odd" for want of a better way to describe it. Inappropriate attempts at humour, long "jokes" with no obvious point, needing to run and bounce, a bit of hand flapping. He gets very frustrated if he doesn't understand something, but is scared of conflict so will not ask the teacher in case he's told off. He gets frequent headaches, that seem related to frustration. But I may be exaggerating as now I'm in full research mode, and then I notice anything and may well be blowing it out of proportion.
Thank you for book recommendation Marchduck, I'll go back to Amazon smile self-medication via amazon is my preferred approach.

Kirabelle Wed 24-Jul-13 22:39:28

Actually insanity has made a valid point there -neither of my two have a learning difficulty but I believe that while ds is classic aspie he will get on much better than dd going through life.She is much better academically but cant really function socially whereas he is average academically but is very sociable.
A good example of this today is that we went to the cinema as planned.DD has not been in almost 3 yrs as she is 'afraid she will see someone she knows'confused but agreed to go if we went to one in another town.Got there and she refused to get out of the car as she spotted a group of girls her own age going in-didnt even know them! Eventually we went in and she stood frozen to the spot,head down,hair covering face while I bought tickets and only relaxed really when the lights went off in the cinema.DS on the other hand strolled up to the counter and ordered his own popcorn meal etc , engaged with the staff there and enjoyed the whole experience far more.
It makes me realise more and more that its the social skills are far more important than academic achievement for kids with ASD.
DD will probably have great exam results yet will not be capable of doing a college/job interview but ds with his poorer results will be well capable of same.
Sorry, a bit off topic OP but I think its an important point for those with younger dcs on the spectrum.

marchduck Wed 24-Jul-13 20:55:51

Turbo, you may have already seen it recommended here, but just in case you haven't, the Hanen "More than Words" book is a great resource for developing communication with a DC who has difficulties with communication. Another thing that helped with DD was trying to get her to look at me, even just momentarily, when I talked to her. It was hard at first, because she wasn't interested, but it has become much more natural, and I think it has definitely made a difference.
It's great that you have the referrals in place already - hope everything goes well for your appointments. Thank you for starting this thread - it's really interesting to hear other peoples' experiences.
Future, I have two DC; one that has ASD, and one that doesn't. My DS is 6 - he has always been very advanced, very social, loads of emotional intelligence. My DD is 4 and she has ASD. We were initially told at dx that DD was moderate with potential learning difficulties. EP had said the week before that she thought DD was very mild. Her IQ is in the normal range, and she is starting to show an affinity for maths/science type stuff- the complete opposite of DH and me. It's hard to know what to make of it. Only time will tell how she gets on at school though,so I completely relate to the worry you have. All the best with your DD.

Ineedmorepatience Wed 24-Jul-13 16:27:05

I also have a Dd3 with Asd she wasnt diagnosed until she was 9 but I suspected she had Asd from a very young age.

She was extremely sound, smell and texture defensive. She had an extremely restricted diet and would only drink orange juice!

It was a battle to get her difficulties recognised but we got there in the end.

She is very able academically but needs quite a lot of support at school.

Now she is nearly 11 she would probably say that communication is the most difficult thing for her. She finds it difficult that people dont say what they mean and say stupid things that they dont mean!!

Good luck smile

turbochildren Wed 24-Jul-13 16:26:56

thanks for long explanation Kirabelle, it is good to hear from others what gradually became apparent, because sometimes you just put it down to being quirky etc and it can be things that are rather upsetting for the child.
Futuremum, I recognise some of the things you describe in my daughter too. She will look at me, she laughs. My mum is convinced she heard her say "yellow" twice, but never again. She once answered "yes" to a question, i nearly fell over, but it's never happened again. I also am pretty sure she called Mum once she could not find me, but her speaking voice is a bit different from her singsongy voice. Well, I think anyway, it's only been heard on very few, unexpected, occasions.
Apart from that, through researching now it looks like I'm on the autistic spectrum myself, and my oldest, and then very clearly my youngest.
To be honest, for myself that would be a huge relief, as it would explain rather a lot. I looked at aspergers in women, but apparently now the classification has been changed to autistic spectrum disorder?
Anyway, I digress a bit. It was to talk about whether it's usually a one off in a group of siblings. It's rather impossible to guess, isn't it?
My oldest seem to trundle along fine in mainstream school, as he's academically adept. We are hopefully moving country, so I'm wondering how that will affect him.

insanityscratching Wed 24-Jul-13 15:41:36

Futuremum I have a ds and a dd with autism. Ds was diagnosed with moderate autism aged 3. He's now 18 and attends an autism specialist school he has 8 GCSEs even though at three they diagnosed learning difficulties (later rubbished but understandable as he had no speech no understanding and was always on his own agenda at assessment).
Dd was diagnosed at two with moderate to severe autism she's now ten and academically very able so neither of my two have learning difficulties despite having significant autism.
What I would say though is that ds's GCSEs are no indicator of his ability to function in the outside world at his specialist school there are many children without the academics who function at a higher level than ds and as a result are far more independent.

Kirabelle Wed 24-Jul-13 13:11:54

OP , Ive just read back the sentance you wrote about your ds social norms seem to escape him somewhat,but he compensates by being quiet at school and very good at drawing. This pretty much describes dd when she was in primary!

Kirabelle Wed 24-Jul-13 13:05:21

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.

FutureMum Wed 24-Jul-13 12:04:28

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?

turbochildren Wed 24-Jul-13 07:36:38

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!

Kirabelle Wed 24-Jul-13 02:20:43

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!

turbochildren Tue 23-Jul-13 21:00:42

I had to smile at the mil being spectrum embodied. smile
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 smile

insanityscratching Tue 23-Jul-13 20:04:00

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.

ArthurPewty Tue 23-Jul-13 19:40:36

Message withdrawn at poster's request.

RippingYarns Tue 23-Jul-13 19:35:24

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.

ArthurPewty Tue 23-Jul-13 19:26:18

Message withdrawn at poster's request.

autumnsmum Tue 23-Jul-13 18:25:20

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

turbochildren Tue 23-Jul-13 18:12:11

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

ArthurPewty Tue 23-Jul-13 17:01:40

Message withdrawn at poster's request.

ArthurPewty Tue 23-Jul-13 17:00:37

Message withdrawn at poster's request.

turbochildren Tue 23-Jul-13 13:58:35

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?

routineandrules Tue 23-Jul-13 13:55:59

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.

RippingYarns Tue 23-Jul-13 12:31:00

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

ArthurPewty Tue 23-Jul-13 12:14:34

Message withdrawn at poster's request.

turbochildren Tue 23-Jul-13 12:11:09

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

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