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Girls with Aspergers.

(26 Posts)
Lulu1981 Tue 28-Jun-11 14:09:23

Hi, we are just about to embark on our 2nd round of the referal process for our 6 year old daughter. She was assessed by SALTS 2 years ago for her food/eating issues who informed us it was not physical but after meeting DD she made the referal to PCAMS (Primary Child and Adult mental health) They pretty much poo poo'd our concerns at the time and sent us away, although DD spent all 6 sessions hid upstairs or behind a curtain. As she has gotten older some of her problems remain and our GP is very surprised that she has not been refered on fo further assessment. So we start the process again. DD's school are behind us and we have started collecting all the evidence we need to support our claim that she has Aspergers. I have 3 nephews all on the spectrum (I think my sister may even be a member on here) so a lot of the 'symptoms' for want of a better word, I can spot from a mile off. Admittedly she is very high functioning, but the only way to describe her is a very intelligent lone wolf that live in a bubble.

I would love to hear your experiences of girls with aspergers and how you found the whole process. I am determined that my worries will be heard this time.

amberlight Tue 28-Jun-11 16:53:44

Hi Lulu, many wise people on here who can answer many things.
Me, I'm female and on the autism spectrum. The trouble is, most of us are missed from diagnosis. I didn't get diagnosed until I was in my 40s, and that had to be done privately. The specialist confirmed that I'm very autistic, not just a bit...but the assumption is always that
It only affects boys
It is always something to do with a low IQ
It's accompanied by speech/language issues
The boys are all aggressive and wild and run away a lot
None of us can empathise
We can't make or keep friends
We're all 'savants'

etc etc etc. So many professionals only have that checklist in their minds and discount the vast majority of people on the spectrum in favour of the relatively few wildly behaved lads.

Girls tend to be dx with anxiety, depression, eating disorders, ocd etc instead of autism spectrum conditions.

Well worth pushing for a proper set of tests, done by someone familiar with how it looks in women. Worth reading up on it too. Good books out there, or have a whizz round the websites for Temple Grandin, Donna Williams, Wendy Lawson (or mine....).

Hope you get some answers....

Vroomfondel Tue 28-Jun-11 17:28:33

DD2 has just been diagnosed (age 13). I'm, halfway through Aspergirls by Rudy Simone.

With DD I had my head in the sand for many years waiting for her to grow out of her irrational hatred of school, noise, clothes labels and for her to start eating properly.

Finally got referred to CAMHS because she was refusing to go to school (when she got too big for me to carry in screaming) about 3 years ago. Had some sessions with a psychiologist. Handed over to her my list of concerns and she referred on to the Pervasive Developmental Disorders Assessment Group. 2 years later. One session with a psychiatrist and psychologist and they confirmed that yes, she does indeed have aspergers. I'm waiting for the report to arrive for details.

Marne Tue 28-Jun-11 21:13:05

Just thought i would say hi, i have 2 dd's one (7) with Aspergers and one (5) with high functioning Autism, dd1 was diagnossed at the age of 4 and dd2 was 3. Dd1 has changed a lot sinse diagnossed, she has improved in a lot of areas but now has other problems which are mainly to do with anxiety, food issues and social issues (she's very in your face and will talk and talk), she's doing well at school (top of the class for english, maths and science) but struggles with friendship, all her friends are boys, she doesn't like girly things and is too full on for the girls (so they push her away). Dd2 is more severe and does not really socialise, she will play alongside people and is happy to be dragged around by other children but as her speech and language is so poor she doesn't really communicate with other children (although she will happily talk to adults) but accademicly she's doing great (loves reading and maths). Dd1 tends to get forgotton about sinse dd2 started school (i spend most of my life in appointments, school meetings ect.. for dd2) so dd1 plods along at school until we hit a problem and then the anxiety kicks in sad. I'm sure dd1 will do well as she gets older and be very independent as an adult (unlike dd2).

mumslife Tue 28-Jun-11 21:30:30

Message withdrawn at poster's request.

yodelayheehoo Tue 28-Jun-11 22:43:46

My DD1 aged 8 was diagnosed with Aspergers Syndrome a few months ago. The first person to mention to me that she might have some form of ASD was her Y3 teacher back in September.

I contacted my GP and explained the schools concerns and was referred to CAMHS, who eventually gave us the diagnosis. Where are you in the country? I'm in Berkshire and have been impressed by the help we have recieved.

CherryMonster Tue 28-Jun-11 23:14:08

i am awaiting an aspergers dx for dd1 (6) i am almost 100% certain that i will get it. she doesnt really have food issues, but she has sleep issues, mild agoraphobia, social, emotional and behavioural problems, ocd, and anxiety, however she is exceptionally bright and her memory is incredible. the teachers at her current school will not get into arguements with her because she has an answer for everything, and not only does she know all the big words, she knows what they mean and can use them appropriately. however, she is behind at school and is not really progressing at all, is extremely volatile and has been excluded 6 times for violence towards teachers. she also has moderate eczema so not only does she have clothing issues associated with asd's, she has fabric and texture issues because certain fabrics irritate her skin which makes her even more grouchy. having said that, she can be the most adorable little girl ever, and when you catch her in the right mood she can be so imaginative and eloquent.

Lulu1981 Wed 29-Jun-11 18:53:56

Thank you all for your replies.. I have 3 daughters this is my middle one..
for the person that asked above i am on the oxon/bucks border.

DD2 Has always been a handful, she never ate well from a baby and we just put it down to being a fussy eater. As she grew her behaviour towards food became unbareable she would throw her dinner, tantrum for hours, threaten us with cutlery you name it.. She became very funny with people touching anything she was to eat of drink, wrong colour juice in the wrong colour beaker, if the lid was touched she would have it washed 5 times before being acceptable, she would insist crisps be opened with scissors and not hands etc. I had been dealing with the 'fussiness' on a daily basis for a couple of years so i played by the rules and could generally cope with her but my poor husband would get so upset by it. She would smear tooth paste over the mirror, she chants and repeats phrases, the moonpig is a personal favourite of mine. She has little imagination, but is a whizz at puzzles etc. She can recite a simple book after just hearing it read once. she lacks empathy and any form of punishment would be accepted but would not deter her from doing the punishable deed again, she is was very violent towards her older sister. She often wets herself in stressful situations. Even in familiar surroundings she will eventually withdraw and hide in a corner, she gives but cannot hold eye contact. she is very sensitive to smells, taste, sounds birthday parties were a nightmare. She doesn't understand many jokes or games. I am ashamed to admit that on a couple of occasions i have caughter her being quite menancing towards her peers, throwing things or shutting them in a cupboard. to be honest I could go on.

As I said above she is very very bright, and 9 times out of 10 she causes me no problems, other than walking into roads in a daze and being the clumsiest child i have ever met, she costs me a fortune in plasters.

During our first assesment we basically got told that she cannot possibly have all those 'symptoms', that it was behavioural, nothing wrong with her. We have been refered to the same people this time. I have very little faith in them now to be honest.

Looks like I am in for a long ride....

SarahStratton Thu 30-Jun-11 07:46:50

Vroomfondel, you could be me. I'm just about to embark upon trying to get my 13 year old DD2 diagnosed. She too hates school, struggles with the concept of friendship (she can't understand why everyone is not like her, doesn't 'get' social rules, is very tunnel visioned etc). She is obsessive, hypersensitive to noise, has issues with clothes (school uniform is a nightmare), food issues (mostly obsessed, cant recognise being full) and lots of other telltale traits. She has a recent diagnosis of depression and is under CAHMS.

She met a new friend for the first time the other day. This friend has 30 years experience working with Aspergers and autistic people, and 'recognised' her. After a long chat, finally DD's quirks are making sense to me.

If I've said or say anything deemed offensive, would someone please pull me up on it. I have very limited knowledge and would hate to say something 'wrong'.

I'm also recognising a lot of XH in this, and his older sister.

nicevideoshameaboutthesong Thu 30-Jun-11 09:14:17

Both of my girls have HFA, which is very like Asperger's...

SarahStratton Thu 30-Jun-11 10:47:28

Could anyone recommend any websites, etc that are good? Thanks.

Vroomfondel Thu 30-Jun-11 11:55:22

no offence at all Sarah (how's mortimer?)

here has good printouts, including one by Tony Attwood about girls

national autistic society also has oodles of info.

have a read of Tony Attwood too.

Ineedalife Thu 30-Jun-11 15:15:48

Hi, just lulu thought I would tell you about my Dd1 and Dd3, neither have a dx but I believe they both have aspergers.

Dd1 [22] is very bright but dropped out of school after GCSE's, she is now a mum herself and works full time. She struggles with empathy, mainly and leads to quite a few problems. Her theory of mind is not great either and this too leads to difficulties.

Dd3[8] is also very bright and is being assessed she has been in the system for over 2 years she is currently stuck in a queue waiting to be seen by a pyschiatrist at teir 3 of CAMHS. She also has very poor theory of mind and struggles with empathy, she struggles socially and has recently moved schools due to a lack of support. She also has hypermobility and low muscle tone.
She has all sorts of issues going on.

They can both be lovely they always have loads of enthusiasm for their chosen activities and have a quirky but funny sense of humour but they are hard to live with and clashes within the family happen regularly.

CFSKate Thu 30-Jun-11 19:13:31

I've just read these two blog entries, and I thought they might be interesting for some of you to see too.

HuckingFell Fri 01-Jul-11 21:53:25

CFSKate. that blog is brilliant - it is like she is in my head.

lisad123 Fri 01-Jul-11 23:04:21

I have two girls with Autism (HF) and girls are so much more difficult to dx. I would strongly suggest you keep a daily diary until your appointment, read some of Tony Atwoods books, and maybe consider attending the NAS conference for girls this month.
Can I ask where you are? There are a few ASD support group around especially for girls which I have found so helpful.

Al1son Fri 01-Jul-11 23:24:54

I have two girls with AS. DD2 (8) was diagnosed a few weeks ago and her presentation is much more subtle than your DD's.

I think it might help you to keep a diary of your DD's behaviour and what triggers it. Make it quite detailed and include any behaviour management techniques you are using and her responses so the future professionals can see the volume and frequency of the difficulties you are encountering. It takes away a little bit of their ability to put your opinions down to over-dramatisation.

I second the recommendations to look up some of Tony Attwood's texts. Asperger's and Girls is very good, although only a small part covers such a young child as you have, and I also like The Complete Guide to Asperger's Syndrome. There are also lots of interviews out there on the web that's he recorded about AS and girls and he also has his own website will lots of useful info on it.

Don't give up on this battle. Your DD may very well need this diagnosis to access support at school in the future and it will also help her to put her own difficulties into a logical context which will help support her self-esteem.

CFSKate Tue 05-Jul-11 17:22:10

HuckingFell - thanks for the feedback that the blog is accurate, in your opinion. From your comment I assume you have Aspergers?
I found it very interesting, but I didn't know whether people with Aspergers or who know about Aspergers would say it was accurate.

I read the entry and it was a real eye-opener to me that when the teacher offered the chance to sit in the classroom, this only seemed to make things worse for the girl. I was shocked that the girl would rather have the same solution she had before, than an improved solution.

HuckingFell Wed 06-Jul-11 22:41:36

I do have aspergers. As does my sis who was also transfixed by the accuracy.

hmm. I shall try and explain.

The girl went up to the teacher with a clear detailed expectation of events that would require no further thought or stress. She was probably already relaxing into the thought of just standing there being.

instead she was hit with an unexpected change of path. No easy option, and a whole new set of variables to work out. Deeply stressful!

HarrietJones Mon 11-Jul-11 10:32:52

Can I ask hpw you all managed with getting diagnosed. Was it difficult to find people who understood the differences in girls?

lisad123 Mon 11-Jul-11 11:05:05

We got our via the Paed at the child developement centre. DD1 was given a working dx at 6, with help from school, a salt assessment and a daily diary from us.
DD2 was seen at 2 years but only had my say so and that of the SN HV, so had to wait but she went to a special school at 3yrs, and was dx by same paed, with help from salt and her sn teacher

HarrietJones Mon 11-Jul-11 11:42:54

Thanks, just wondered how clued up people are really

HuckingFell Mon 11-Jul-11 12:16:55

private diagnosis as an adult. Rubber stamping really - it was bloody obvious.

HarrietJones Mon 11-Jul-11 12:26:11

Has it made any difference to you Hucking?

HuckingFell Mon 11-Jul-11 15:18:45

It has made a diff as in I now feel less like a nut/freak and no longer push myself to the meltdown point. I am much more accepting if what I can do and what boundaries I need to put in place for my mental health. Um like scheduling alone time, not taking on too many social events without adequate breaks in between. Recognizing that while I really like spending time with people in order to do that I need buffer zones around it to decompress.

Work stuff has made little diff but I am an it geek-excellent cover! wink

Close family wise my side is full of aspies (some diagnosed some don't see the point). my DH is pretty def on the spectrum so I was lucky there I suppose grin.

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