HELP Please

[Annea]

When my daughter was seen last by her speech and language therapist, I was told that moves had been made to differentiate between the diagnostic tests for girtls and boys with Asperger Syndrome, due mainly to the huge variables in which the different sexes present and cope with symptoms.

 

Does anyone know about this? Can anyone point me in the right direction towards links for new research?

 

I would ask the SALT but due to personal probs she is uncontactable at present.

 

I am grateful for help

 

Anne

[jb1964]

Sorry can't help Annea, but am sure someone will post soon.

 

Take care,

Jb

[baddad]

Hi anne -

I haven't heard anything specific but it's about bl00dy time!

If somebody claimed there was no difference between NT boys and girls (apart from the shape!) they'd be laughed out of court! To make that assumption about boys and girls on the spectrum is no less ridiculous! Girls and boys present very differently - for both psychological/physiological and environmental reasons. I don't know if there is a 'real' difference in incidence ( I suspect there might be a slight one in favour(?) of the boys because sexual development for boys demands later changes in-utero), but am convinced if ther is one it's nowhere near the 5-1 ratio considered 'standard' at the moment...

Sorry I can't help more specifically, but any research to provide earlier appropriate dx for girls is somthing to celebrate...

L&P

BD

[Kathryn]

No, this is news to me too, but anything that contributes to a greater understanding of girls on the spectrum is a good thing.

 

I've just had a quick look at the Cambridge Autism Research Centre site as they do a lot of research into developing better tests for diagnosis, but I can't see anything obvious. It might be a good place to start your quest though - if anything is being done in this area they would surely know about it.

 

(Sorry Annea- for some reason it's not letting me do the direct link to the site so you'll have to google it. )

 

K x

[shortie]

Don't know if this helps but from what i've been told girls are far better at masking their "problems" than boys and this includes more able autistic girls as well as asperger girls!My DD is 4yrs and in her class the more able one(6 in class,DD only girl and more verbal than boys)but staff told me girls in general are more sociable than boys,so ASD girls can sometimes mask thing better than boys so can be harder to DX

[Annea]

Thanks all, I will continue my quest....

 

The reason I was asking is becuase my daughter aged almost 13 diagnosed A/s 'appears' to cope really well at school.

 

She 'appears' to have lots of friends and doesn't 'appear' to be overly anxious at school,,, however when she gets home she turns into a quivering wreck and is often in tears.

 

She recently told me that she "doesn't know how long she can go on for like this"

 

Now even an independent edpsych said she was surprised at how well she appeared to be coping.... yet if I talk to her at home she say's she likes school.... when I ask her which bits she likes, she tells me she likes to learn......

 

Their is nothing else that she really likes although she says "some things aren't as bad as others" As she gets older, she is yr 8 now, she eseems to be suffering more and more symptoms of anxiety and negatve stress..... and yet because she copes so well ay school she seems to be masking her own problems.......

 

She gets teased a heck of a lot, and the kids seem to have no problem at all in picking out her being different, but the teachers just seem to think it's me, making a fuss!

 

aah well, I'll show em one day!!!!!!!!!!!!!!

 

Anne

[Clare63]

Thanks all, I will continue my quest....

 

The reason I was asking is becuase my daughter aged almost 13 diagnosed A/s 'appears' to cope really well at school.

 

She 'appears' to have lots of friends and doesn't 'appear' to be overly anxious at school,,, however when she gets home she turns into a quivering wreck and is often in tears.

 

She recently told me that she "doesn't know how long she can go on for like this"

 

Now even an independent edpsych said she was surprised at how well she appeared to be coping.... yet if I talk to her at home she say's she likes school.... when I ask her which bits she likes, she tells me she likes to learn......

 

Their is nothing else that she really likes although she says "some things aren't as bad as others" As she gets older, she is yr 8 now, she eseems to be suffering more and more symptoms of anxiety and negatve stress..... and yet because she copes so well ay school she seems to be masking her own problems.......

 

She gets teased a heck of a lot, and the kids seem to have no problem at all in picking out her being different, but the teachers just seem to think it's me, making a fuss!

 

aah well, I'll show em one day!!!!!!!!!!!!!!

 

Anne

 

Anne, I know exactly where you are coming from my DS is in Year7/8 behaves exactly the same, like you say everyone esle seems to think as Mothers we are making a fuss.

 

Clare x

[Guest Lya of the Nox]

well i was telling those in the know for years that my dd was different

and EVEN had to produce her diag letter at recent parent evening cos no ###### believed us!!

she has good mates who really protect her ( new at this school, primary she was ridiculed big time, now in year 8)

but i am concerned, she is doing well at edu, but i think the social stuff is crippling her, and we are now having more and more issues at home

so i know where u are coming from

[shortie]

My DD is only 4yrs but when i saw her consultant in January he told me it was his job to warn me that alot of ASD children can develop mental health problems ie.depression when they get older!!i guess we all need to know these things but i thought telling me this when shes only 4yrs was a bit premature!but maybe this is something to consider!

[Annea]

My DD is only 4yrs but when i saw her consultant in January he told me it was his job to warn me that alot of ASD children can develop mental health problems ie.depression when they get older!!i guess we all need to know these things but i thought telling me this when shes only 4yrs was a bit premature!but maybe this is something to consider!

 

 

Hi Shortie,

 

I too was told this by my daughters diagnosing doctor, she told me that As my daughter was very highly strung and anxious then aged 10, she would be at high risk of developing anxiety related disorders and depression.

 

Anne

[It's Everyone Else!]

Hi Annea

 

My 14 year old daughter was diagnosed with HFASD fairly recently. I think it is true to say that girls generally mask the signs of ASD/AS more than boys and appear outwardly to be "coping" especially if they are high functioning and managing to maintain some sort of achievement at school. Sadly she has developed a severe anxiety reaction in the form of psychosis and depression.

 

When our daughter was little, we suspected autism and asked our GP and HV but were assured that there was nothing wrong - just a bit of eccentricity! We now feel incredibly guilty that she has been struggling for 14 years because we allowed ourselves to be brushed off. Some sort of test would have been really useful and I can't help but feel that our daughter might not have had such an extreme anxiety reaction if we'd realised the extent of what she was going through. We've always supported her as best we can as we have always known she was "different" but a diagnosis would have enabled us to educate her school teachers and maybe lessen the load a bit.

 

It sounds as though you are very supportive Annea. Keep a close eye on your daughter and really stand your ground with the school if she becomes any more anxious. They have a duty to take care of her mental wellbeing while she is there although I'm sure you don't need me to tell you that you might have to be a bit pushy to make them listen.

[lynda4]

My dd is certainly very different from her brothers but then all the boys are different from each other too, so personality and the exact disorder does account for some of those differences. She has an ASD but is not diagnosed with Aspergers specifically. She has a social difficulty but rather than not wanting to socialise, she's hyper-social. It was much more obvious when she was young but she's calmed down a lot now she's a teenager. Even just a couple of years ago she would come into a room if I had someone visiting and it could be a professional who she'd never met, bounce over and sit on their knee! Late afteroon today I had a professional round who she'd never met before and she came in, in her dressing gown, hair dripping from a shower. Came over and sat on the settee next to me, grinning at him and wanting to stay there and join in the conversation, which being her, no-one else would get a word in edgeways! It was hard to get her to leave us to talk and she kept popping back in with questions on her homework and other excuses. When she was younger, she would take the hand of a complete stranger who smiled at her and would have gone off with them at the drop of a hat, which caused me no end of worry. Having said that, she doesn't have any proper friends because though she's sociable, she's not in line with other girls her age and sometimes for any age, she's not your usual girl. The boys tend to avoid company but she revels in it.

 

She enjoys school and always does her best to the point of being obsessional about it. She takes great pride in her work and everything has to be done to her exacting, self-set standards. So she would spend most of the evening doing a peice of homework. With the boys, they'd avoid homeork like the plague, even to the point of being completely unable to do it because of the home/school setting. So though she can be obsessional, its not like it is with the boys.

 

She knows what her difficulties are, sees them in herself (not always but usually) and works hard at overcoming them. With the boys, they often didn't notice that they were different and if I said something, they would argue that they were right and everyone else was wrong! There's a lot of truth in the saying that autism is extreme maleness!

 

These are just some of the differences I've noticed, I'd also say that her anxiety is higher than with the boys and she has anxiety about different things. Like that people won't think well of her, teachers might be angry or upset if she doesn't do her work etc. The boys don't give a hoot.

 

Because she has the ability to see where her differences lie and cares about the social side of things, I expect her to have a better outcome, if that's the right phrase? She has the motivation to adapt but the boys don't. In fact the boys all have a distinct lack of motivation but dd has much more of it, epecially in certain areas. I think too, that sadly perhaps, girls like her would adapt too much and lose some of their own personality in an effort to fit in. That's what I did at about her age and ended up losing most of my own personality for many years. I felt in a way like I was an actor playing parts, or in a dolls house, moving the people around but none of it being real IYSWIM? I've certainly got autistic traits myself and can see a lot of myself in dd, so can empathise with her to a large degree. I also had high anxiety at school and have suffered from depression in later life but then I had a different childhood to them and there were other reasons for me being anxious, like bullying. Its like the chicken and the egg, are our children anxious because they have an ASD and it 'biologically' comes with that, or are they anxious because of the way their peers, school, society generally treats them because they have an ASD?

 

Links below, both to the same article about girls with Aspergers.

 

http://www.reboundtherapy.org/papers/asper...h_aspergers.doc

 

or the link below, which seems to be the exact same article just presented differently online

 

http://www.aspergerfoundation.org.uk/infosheets/ta_girls.pdf

[bid]

That's really interesting, Lynda...I can see a lot of myself when I was young in your description of your daughter.

 

I've been referred to a specialist diagnostic team, and I completed their referral pack over Easter. I found it interesting that the questionnaires were often quite 'male' in their orientation...the interests used as examples were often things like 'maps', etc! I'm worrying at the moment that when these are all assessed I still won't get an actual assessment appointment because I don't fall into that 'male model' IYSWIM, even though my local mental health team identified that I present with autistic traits, and I certainly feel as though I have AS!

 

My eldest DD has a great many 'quirks' for want of a better word, but would never get any kind of dx as things stand, even though she struggles with things like auditory sensitivity, word finding, sensory overload, etc. These things have also become more obvious as she has got older (she is nearly 12). She also stims, gets hugely agitated with change of any kind, has set routines such as eating her food in a specific order, gets hugely upset when things aren't done 'properly' or put in the 'proper' place, etc, etc. BUT she is also very social, is gifted at music and drama and since she has been at secondary school she has a lot of friends (struggled with this at primary school and was badly bullied). We have no doubt that she is somewhere on the spectrum, but?? I just wish other people could see how distressed she becomes with her sensory problems, and lately with word finding...she describes this by saying it's as though she can see what she wants to say in her head with the words as a series of buttons in the right order. She has to go over that order before she speaks, but very often she can't find the right word even though she can 'see' the right button in her head.

 

My DD is also extremely pretty, and I think this helps her to 'fit in' and her quirky ways to be accepted by her friends as her being a 'bit bonkers' but quite endearing as she is often the class clown...

 

More research needs to be done into how girls/women present with ASD, and a review of the diagnostic tests is definitely needed.

 

Bid

 

(My youngest DD is definitely NT, bless her, but the other day she told me she wants to be like me when she grows up!! )

Edited April 24, 2007 by bid

[Guest Lya of the Nox]

see bid that is where i am at with mine

she is pretty, bouncy ( to the point of hyperactivity) and socialble in areas where she is comfy

so hey no one can see it

have printed article so i can read later in bed with my tea, ( off work)

x