Girls & Asperger's

[pearl]

Sorry if this has already been posted - couldn't spot anything

 

Linky

[Karen A]

Thanks Pearl.I intended to post a link but forgott.Very good article. Karen.

[Mumble]

Let me make sure I've understood this article correctly...

 

So, if you're female and have dreams of shacking up with Mr Depp, Mr Mead () or any other such well known and 'quite nice' celebrity, often drop their name into your conversation (did I tell you I quite like Mr Mead? ) and might even *shock horror* consider giving up half your chocolate supply () for a private audience with them (oooh, I hope he still has his loin cloth ) there is a possibility you might be on the Autistic spectrum? If, still further, as a child you ever talked about, read about or drew fairies (well I was into the conspiracy of the fake fairy pictures, so I guess that counts ) or were so terribly to the side of society as to enjoy a good book, that clinches the diagnosis of ASD.

 

I don't mean to be completely flippant (just quite a lot ) and I do think it is an important issue that does need to be taken more seriously in terms of clinicians not instantly dismissing a dx based on sex. However we mustn't forget that a dx of autism is actually something not to be taken lightly and the dx criteria themselves explicitly state the need for the impairments to interfere with all areas of life. If we take the list given in this article, we'd being diagnosing half the population with autism - I know many many people who obsess over soaps, celebrities etc. or who as an adult choose to have a more limited circle (or even only one or two) friends and see others as acquaintances but this does not make them autistic.

 

By all means, make people aware, and particularly don't dismiss based on stereotypes, but I think that drawing up a separate diagnosis schedule for girls is really flawed. No, not all girls with autism display typical 'boy' behaviours, but some have and do and where does that leave them? To gender split a dx is to take a huge step back in my opinion in terms of gender equality. This is far more about breaking stereotypes surrounding autism than anything about gender.

 

Now, where did I leave my train set? I'm going to make a Lee Mead driver and turn Mr Depp into the Fat Controller

 

[baddad]

If we take the list given in this article, we'd being diagnosing half the population with autism

 

Only half? I think, ultimately it'll get much higher than that

But only in the UK & US where 'Asperger's' has become synonymous with 'geek chic' and comes with the twin assumptions of above average intelligence and poor empathy. I mean, who wouldn't want to be thought of as brilliant and need never to have to worry about apologising again? As for all those other 'inconveniences' - well, they don't really apply, do they, if you just cherry pick the symptoms you want!?

 

You can label anyone autistic - it's just a matter of selective filtering... I wrote this a while ago to make the point to someone who was asking me about it. It's tongue in cheek, so i hope no one will take offense 'cos there's none intended, but it's also relevent to gender roles and stereotypes too:

 

Hypothesis

 

Hi all -

I'm not sure where to start, really, but I hope you guys can help me because I'm really at the end of my tether and don't know where else to turn for help. I really love my girlfriend, and hoped that we could have a future together, but I'm finding it really hard to deal with some of her 'ways' and can't see any way forward. I was really glad to find this site - a friend of mine has an autistic cousin and I noticed that some of her behaviours seemed to match my girlfriends, so I typed autism into a search engine to get here. It was like a revelation reading through the posts - like a light bulb being switched on.

When we first met a couple of years ago my girlfriend was really sociable. She loved going out pubbing and clubbing and really enjoyed coming to watch me play football on Sunday mornings in the local league. She got on really well with all of my footy mates (could drink half of them under the table!) and loved nothing more than joining us on a lads night out for a curry.

She was always a bit obsessive about stuff - she hardly ever had money when we went out because she spent it all on makeup and clothes - but my mates all said some girls are like that, so I didn't really think anything of it at first. Then one day I opened her shoe cupboard and realised just how obsessed she was - she must have had at least a dozen pairs of shoes in there and three or four pairs of boots too. Crazy or what?

Over time she became less interested in going out and getting drunk. She started wanting to stay in more often - not just on weekdays, but even Friday and Saturday nights - and started to moan about my friends from football, who she felt were childish and a 'bad influence'. She hardly ever wanted to go out, and only seemed to be comfortable socialising with a very small group of mutual friends at quieter venues or at dinner parties and stuff. I think she always had issues with crowds, but 'pretended' to be normal so people would like her. She even disliked the nightclub we had originally met in, saying it was too loud and 'smokey'. She said the music hurt her ears and the smoke made her eyes sting - looking through the posts here, I guess she's hypersensitive to that kind of thing(?). I've said she doesn't have to come and that I don't mind going clubbing on my own, but she wasn't happy with that either. I can't do right for doing wrong in her eyes.

We got our own flat last year, and since then her OCD has got out of control. I'm quite happy with the furniture and stuff my mum gave us, but she's obsessed with buying everything new and wants us to spend all of our money on stuff for the flat rather than the things we used to enjoy together. She nags me constantly about the state of the flat too - she's cleaning all of the time; hoovering sometimes two or three times a week - and goes mental if i leave the toilet seat up.

Even something like renting a DVD has become an issue. When we first met she used to enjoy all of the action films we rented, but now she's into really weird stuff like 'Mama Mia' and 'Dirty Dancing'. At first I thought she was winding me up, but she really does seem to enjoy that kind of stuff. She likes soap operas and reality TV too. A friend of mine thinks maybe she's compensating for the things she's missing - that she can only 'feel' emotions if they are modelled for her and spelled out in black and white. She never cries, for example, at real events like Chelsea losing to Arsenal but can cry her eyes out at some over-the-top period drama or a character dying on Emmerdale. She also laughs at human tragedy - she watches Jeremy Kyle whenever she can and roars at the misfortunes of others.

I tried talking to her mum about this stuff, to see if she could help or offer advice, but she seems to think that it's all perfectly normal. I know that there's a hereditary link to autism, so suspect thats the root of all the problems. I know her dad left her mother when she was a kid, so presumably he couldn't cope with the weird stuff either.

As well as the obsessive stuff at home she's getting into difficulties at work too. She gets intimidated by some of the blokes when they try to have a laugh with her and takes everything to heart. Over the past couple of months she's been really depressed, and while I know that's part of autism too I really don't think I can help her with it. She feels that her manager has been sexually harrassing her, but from what she's told me it just sounds like he's having a bit of a joke and she's got the wrong end of the stick. I've tried to explain this, but I just meet with a wall of resistance - she won't listen to logic. She's now saying she wants to leave the job, but there's no way we can afford to keep the flat if she does.

About six months ago things started getting really difficult. She suddenly announced that she feels our relationship is 'stagnating' and said that she wants to feel like we're going somewhere. I've tried to reassure her, but nothing I can say or do is enough. She did mention marriage once, but I'm only thirty seven and I'm just not ready for that kind of commitment. She's even younger - thirty two - so it's not like we haven't got time on our side. She also mentioned kids, but I'm not sure I ever want those. I'm even more uncomfortable about that now, because if she is autistic doesn't that mean our kids would be likely to get it too?

Anyway, thanks for reading, and thanks in advance for any advice you can give. As I said at the begining, I really love my girlfriend and want to support her in any way I can, but I also need to know that she can change with the right kind of support. Do you think she can meet me half way, or am I flogging a dead horse?

 

Thanks

 

Hypothetical

L&P

 

BD

[Mum of 3]

Quote from Tony Attwood in article:

' "Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script." '

 

Far be it from me to criticise the emminent TA, but isn't this the case with most children? How else do we learn to socialise if not by observing people from a distance and imitating them? I, for one, spent about 3 years doing this in secondary school. I went in with 2 ribboned plaits in my hair, and perfect uniform. Believe me, the terror in my eyes was there for all to see!

By 14, I finally 'got it', and imitated the more 'interesting' characters in order to fit in and be accepted by them. and some of the more colourful language I was soon coming out with was certainly 'a learnt script'- I certainly hadn't picked it up from home!!! And, I was still terrified underneath the bravado . I know for a fact that I am NT, and I'm certain there are thousands of girls like I was going through school every year.

 

Childhood is all about learning how to be part of a group. From at least the age of 5, we bung them all in together in groups of 30, and expect them all to be able to get on with each other.

The children in any reception class will have had all sorts of formative experiences, which will of course influence how easily they slot into this environment. Some will be leaders and some followers. I would say that most will be imitating and learning 'scripts', it's how we learn to get along with each other! Imitation of another person is a good social skill-it shows that you admire and want to be part of that person's social group.

 

I'm sure that there is much more to all this than the article is suggesting, we have to remember this is all filtered through a journalist and then subs, who know no more about ASDs than I know about the Premiere League (that is football, isn't it, cos it's football I know nothing about!!!). The problem is, the way it stereotypes ASDs even further for the majority of the population. By the way, I've had a quick flick through the 'Special Interest' thread and sorry if I've missed any but I can't find any saying the weather, and only a couple of Thomas the Tanks (no trains!).

[baddad]

Quote from Tony Attwood in article:

' "Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script." '

 

Far be it from me to criticise the emminent TA, but isn't this the case with most children? How else do we learn to socialise if not by observing people from a distance and imitating them?

 

 

Yes, I felt the same way on that too - but after the length of my original reply didn't want to 'hog' the topic!

 

I also felt this:

 

Girls escape into fiction. They have imaginary friends, live in another world with fairies and witches, obsessively watch soap operas or become intensely interested in celebrities."

 

particularly the last two, were actually elements of social 'conditioning' that would apply equally to NT girls as autistic girls... I've actually been horrified by how young girls can be when they get 'hooked' on stuff like Eastenders and Hollyoaks both by the fact that they are emotionally unequipped to understand the complexity of what they're watching and because it seems acceptable that they access this kind of stuff at such a young age... C4's 'skins' has raised the bar on that even further, by the pretense of being a 'student' programme when in fact it's much more likely to attract an audience far younger and more impressionable... sorry; wandering from the point a bit there, but getting back to it - soap opera watching and the cult of celebrity are far from being the exclusive preserve of autistic girls... I'd be more inclined (but this is an opinion only, so please don't aske me for research evidence!), in fact, to believe that autistic girls would be less likely to be engaged by that kind of stuff, in the same way that autistic boys seem more likely to get caught up in 'alternative' interests (like computers, trainspotting, stamp collecting) than the usual football and cars...

 

L&P

 

BD

[bid]

Quote from Tony Attwood in article:

' "Boys go into attack mode when frustrated, while girls suffer in silence and become passive-aggressive. Girls learn to appease and apologise. They learn to observe people from a distance and imitate them. It is only if you look closely and ask the right questions, you see the terror in their eyes and see that their reactions are a learnt script." '

 

Far be it from me to criticise the emminent TA, but isn't this the case with most children?

 

Sorry, but as the only other female with a dx of AS in this thread so far can I disagree with you, and BD too?

 

This is certainly exactly what I have done for the majority of my life from about 16/17 when I realised it was the only way I was going to survive.

 

To say that it's what all children do is just echoing all those people who say about our boys 'Oh my son does that/all boys do that!'

 

As ever, someone who is autistic may well do the same as other people, but it will usually be for very, very different reasons. When you have AS you model other people not to 'fit in' but because you have no idea for a lot of the time why the hell most people act as they do, but you see how socially successful people behave and if you're going to survive you realise you had better start doing it too. I am 43 and I still model my social behaviour on others who I perceive to be socially successful, and equally most of the time I don't really understand why they act in a certain way in a certain situation...but it's the best I can do, even though sometimes the results aren't exactly as they would be for one of my models, who do understand why they behave the way they do...just ask any one of my team at work!

 

So while I agree the article isn't necessarily the best, I applaud the attempt to raise the profile of the incidence of AS amongst girls/women and to move away from the idea that any female with ASD must present like a male with ASD!

 

Bid

Edited April 14, 2009 by bid

[Mumble]

I suppose that ultimately (as we all know, but I as much as anyone have a tendency to 'jump' on parts of things we read that don't ring true with us) it comes down to seeing individuals and resisting stereotypes.

 

When you have AS you model other people not to 'fit in' but because you have no idea for a lot of the time why the hell most people act as they do, but you see how socially successful people behave and if you're going to survive you realise you had better start doing it too.

You see, I don't do this - doesn't make myself or Bid any less autistic or any less female - it means we're individuals (maybe very in my case ) with individual presentations of a spectrum disorder. Within this, I get as far as seeing what people do but having no idea why they do it. Copying is, for me in many cases too damn hard; that's not me being lazy (maybe stubborn!) but to constantly be expected to act and behave your every waking (and sleeping) hour in a way that feels so wrong and makes no sense is really damn hard at times and then when you do it and it still goes spectacularly wrong whilst others reap the rewards the knock to your self-esteem and self-confidence is immense. I lost someone who I thought was a friend recently because I didn't play the social game properly and because I didn't engage in practises that to me are completely non-sensical. So, yes the price I pay is not to survive sometimes and it's really horrible when you get these knocks but I don't know the alternative - my modelling of others doesn't work and being myself doesn't work.

 

I applaud the attempt to raise the profile of the incidence of AS amongst girls/women and to move away from the idea that any female with ASD must present like a male with ASD!

True, and I would add though that a male with ASD shouldn't have to be expected to present as a male with ASD - I just feel quite uncomfortable about such gendered stereotypes.

 

I'd be more inclined (but this is an opinion only, so please don't aske me for research evidence!), in fact, to believe that autistic girls would be less likely to be engaged by that kind of stuff

Well if you're happy to have a sample size of one then I can be your 'evidence' I was in upper primary when the Neighbours phenomenon hit the UK. It didn't interest me in the slightest and I never watched it and the gulf that created between myself and my peers (this was in an all girls school) was immense. I can still remember the teachers often referring to incidents from it to illustrate what they were saying or girls saying, oh yeah that's like Whatsit and Charlene (no idea if those names are right! ).

 

I suppose this article 'hit a nerve' with me because there's been a few things recently on girls and Aspergers and I can't identify with them at all whereas before that when descriptions were perhaps more male orientated I could see that I fitted. It's a case of feeling now insecure about myself and my place and where I fit which I think is why I personally reject so much of things like this. It doesn't mean I don't think you can be more typically female and autistic of course not - I suppose if anything I'm just being selfish and clinging to that place I've found for myself and worried about what happens if there were produced the female autistic profile to which I did not fit - what would that make me - no longer autistic or no longer female?

 

[bid]

Mumble <'>

 

I wasn't saying that if you have AS but you don't model your attempts at social interaction that you can't be autistic...I was trying to show that to dismiss this aspect of some AS female behaviour by saying all children do the same is no less damaging than the way many, many people will tell you that your autistic son does x, y or z just because all boys are like that.

 

I guess you and I fall into the two 'stereotypes' of female autistic presentation?? I feel equally at a loss when I can't be autistic 'cos I'm clinically well-dressed!

 

Bid

Edited April 14, 2009 by bid

[florrie]

I can' t tell you how happy I am to see this article.

 

I have known this for around 11 years now but been ignored, for any girls or women who know they are on the asd spectrum but can't get it recognised. Keep this article or take it to the medical professionals, although I did that when I took in an article by chris gillberg and they still ignored it.

 

I've had mine dx by the lindamood bell test on sensory and auditory and visual disortions which are as extreme as you can get and I then took it to a variety of professionals with autism,most clinicians did not understand it but most professors did.

 

I read fluently at 2 as I was hyperlexic, but had difficulties in secondary school due to auditory processing difficulties, my asd son on the other hand, couldn't read or speak but could play chess by memorising the moves and 2 and play the piano straight off by watching someone as he also memorised the moves. When he first learnt to read, after a year I realised he was just memorising the books when he listened to the child ahead read, and everyone thought he was reading but he wasn't

Edited April 14, 2009 by florrie

[Mumble]

I guess you and I fall into the two 'stereotypes' of female autistic presentation?? I feel equally at a loss when I can't be autistic 'cos I'm clinically well-dressed!

Oi!!! *fains insulted look* I put clean clothes on this morning (no custard stains for me ) and the top and bottom are both blue so they must match - I can be CWD too

 

[bid]

Oi!!! *fains insulted look* I put clean clothes on this morning (no custard stains for me ) and the top and bottom are both blue so they must match - I can be CWD too

 

Did you ever manage to remove that sparklie nail varnish off your tootsies?

 

Bid

Edited April 14, 2009 by bid

[Mumble]

Did you ever manage to remove that sparklie nail varnish off your tootsies?

Nope!!! Since that 'experiment' to prove my femaleness I've had to re-paint my tootsies every week because I can't completely unpaint them!! :lol:

 

(but at least the paint is sort of blue so sort of matches my clothes so I can sort of just about get away with insisting that I have a CWD label )

 

[Sally44]

I think bid has hit the nail on the head about the 'reason' behind the behaviour.

Yes, all girls may do that, but what is their motivation? For someone on the spectrum they are doing it without the understanding behind it, they are mimicking/copying attempting to become invisible. And although all children learn by watching. Those with ASDs are not learning. That is the whole point. They can't and don't learn from their peers. They copy. And for many they have no idea as to why what people do works, they just see that it does, but they cannot work it out and it never becomes second nature to them. It is a constant exercise in keeping up appearances. Someone put it quite nicely when they said to me that it was 'as if the handbook on the rules of how to get on in life was never given out to me', and that was a woman on the spectrum. And she constantly tried to fit in, but her attempts were always misinterpretated as being snobbish, reserved, picky and someone who sucked up to the boss. When really she used precise language, tried to avoid groups, and tried to keep to doing things the way she felt best doing them and avoided the daily chit chat by keeping her head down and getting on with her work. This woman was continually bullied out of jobs, and usually only lasted about 6 months in any one of them.

Unfortunately humans do have this 'pack' identity and will attack vulnerable people.

[bid]

Nope!!! Since that 'experiment' to prove my femaleness I've had to re-paint my tootsies every week because I can't completely unpaint them!! :lol:

 

(but at least the paint is sort of blue so sort of matches my clothes so I can sort of just about get away with insisting that I have a CWD label )

 

OMG, you didn't follow Warren's suggestion to use car paint did you?!

 

Bid

[baddad]

Sorry, but as the only other female with a dx of AS in this thread so far can I disagree with you, and BD too?

 

This is certainly exactly what I have done for the majority of my life from about 16/17 when I realised it was the only way I was going to survive.

 

To say that it's what all children do is just echoing all those people who say about our boys 'Oh my son does that/all boys do that!'

 

As ever, someone who is autistic may well do the same as other people, but it will usually be for very, very different reasons. When you have AS you model other people not to 'fit in' but because you have no idea for a lot of the time why the hell most people act as they do, but you see how socially successful people behave and if you're going to survive you realise you had better start doing it too. I am 43 and I still model my social behaviour on others who I perceive to be socially successful, and equally most of the time I don't really understand why they act in a certain way in a certain situation...but it's the best I can do, even though sometimes the results aren't exactly as they would be for one of my models, who do understand why they behave the way they do...just ask any one of my team at work!

 

So while I agree the article isn't necessarily the best, I applaud the attempt to raise the profile of the incidence of AS amongst girls/women and to move away from the idea that any female with ASD must present like a male with ASD!

 

Bid

 

Hi bid/all

Sorry, I can see I was a bit unclear in my post - so for clarity the bit I was agreeing about was that fact that in this article they were describing a pattern of behaviour/response that was observable in both autistic and NT people. I do agree with you that the reasons might be different in each case, but also think that personal psychology as well as 'autistic' psychology has a part to play in that - Many girls may model their social behaviour on peers, and the reasons for doing so may well be similar to your own ('survival') but that'd not necessarily because they are autistic, but because behavioural 'norms' are becoming increasingly narrow, and the pressure to conform with those norms increasingly aggressive - particularly among the 'ladette' culture...

If you think about it, it's just a new set of stereotypes and expectations - as limiting to the individual as the older stereotypes of 'sugar and spice' or 'radical feminist' (which should not be taken as a slight by any laydeez out there who are 'sugar and spice' or 'radical feminist' - I'm just making the point that aggressive social pressure to conform to either of those roles for someone who is not is wrong.)

Picking up on the point made by TA - he also said that [autistic] girls are more likely to respond with passive aggression while boys are more likely to go into 'attack' mode... Again, I think these are sweeping generalisations both in terms of the responses being highlighted and their 'autistic-ness'(? )

The simple, fundamental truth is that ALL humans seek to control/understand their environment, and depending on individual psychology, physicality and circumstance will use either/or/both of these universal 'tactics' to do so.

Where I do agree with Borat et al is on the point that women on the spectrum do (often - not always) present differently to boys and that the current figures regarding 'ratios' are probably misleading as a consequence. I think this arises partly from social factors/conditioning and partly from differences in male/female psychology and neurological development, and that the diagnostic criteria for autism needs to acknowledge that autistic boys and girls are capable of being just as 'different' from one another as non-autistic boys and girls, and that's just the way god, nature or the great green pulsating orb in the sky intended!

 

Hope that clarifies things - and to put it in a nutshell I just wish people like TA would STOP making sweeping generalisations, because they should be very very aware of how damaging stereotypes can be.

 

L&P

 

BD

[Mumble]

I think bid has hit the nail on the head about the 'reason' behind the behaviour.

Yes, all girls may do that, but what is their motivation? For someone on the spectrum they are doing it without the understanding behind it, they are mimicking/copying attempting to become invisible. And although all children learn by watching. Those with ASDs are not learning. That is the whole point. They can't and don't learn from their peers. They copy. And for many they have no idea as to why what people do works, they just see that it does, but they cannot work it out and it never becomes second nature to them. It is a constant exercise in keeping up appearances. Someone put it quite nicely when they said to me that it was 'as if the handbook on the rules of how to get on in life was never given out to me', and that was a woman on the spectrum. And she constantly tried to fit in, but her attempts were always misinterpretated as being snobbish, reserved, picky and someone who sucked up to the boss. When really she used precise language, tried to avoid groups, and tried to keep to doing things the way she felt best doing them and avoided the daily chit chat by keeping her head down and getting on with her work. This woman was continually bullied out of jobs, and usually only lasted about 6 months in any one of them.

Unfortunately humans do have this 'pack' identity and will attack vulnerable people.

*nods* I think over time I have given up trying more and more (possibly not a good idea). The trouble is you NTs are terribly annoying and don't do everything the same every-time - you change the way, the environment within and the flow of your behaviours. But social interactions (I've found and I'm quite happy to be told I'm wrong) seem to have such specific ways and specific timings to them that it's more obvious if you copy something wrong that don't copy at all in some ways. I'm fed up of having been misinterpreted and misunderstood when all I've ever wanted to do it do the right thing and I'm terrified about the future and never finding a place I fit. I suppose a lot is about society's attitudes towards difference as much as anything else.

 

OMG, you didn't follow Warren's suggestion to use car paint did you?!

You mean that was a joke? No I didn't, honest, but I've decided that a)they're better painted and b)it saves trying to get it off - that'll be my lazy side again!!!

 

[bid]

Hi bid/all

Sorry, I can see I was a bit unclear in my post - so for clarity the bit I was agreeing about was that fact that in this article they were describing a pattern of behaviour/response that was observable in both autistic and NT people. I do agree with you that the reasons might be different in each case, but also think that personal psychology as well as 'autistic' psychology has a part to play in that - Many girls may model their social behaviour on peers, and the reasons for doing so may well be similar to your own ('survival') but that'd not necessarily because they are autistic, but because behavioural 'norms' are becoming increasingly narrow, and the pressure to conform with those norms increasingly aggressive - particularly among the 'ladette' culture...

 

But the point is that any 'autistic' patterns of behaviour can be seen amongst NT people at different stages of a child's development. If you follow your argument to its logical conclusion, you might as well say that therefore no-one can be diagnosed as autistic.

 

Surely the whole point is that these observable, human behaviour patterns become, as it were, 'autistic', when they are being acted out by someone who has the different wiring of an autistic brain.

 

I would hazard a guess that all the parents of autistic boys on here have at one time or another been told that 'Well, my son does that/all boys do that so your son can't be autistic!'.

 

Bid

Edited April 14, 2009 by bid

[baddad]

I would hazard a guess that all the parents of autistic boys on here have at one time or another been told that 'Well, my son does that/all boys do that so your son can't be autistic!'.

 

Bid

 

I would agree - and add also that every parent of autistic girls has heard the same thing... that's the point I'm making - you can't look at or draw conclusions from any behaviours in isolation, or make predictions about particular behaviours being present (i.e. 'he/she can't be autistic because he/she makes eye contact'...) the logical conclusion of my argument isn't that 'nobody has autism' but that autism isn't defined by any one, or even several, aspects of behaviour that apply to pretty much everyone. The logical conclusion of that is that everyone does have autism!

A diagnosis of autism should encompass full holistic assessment that takes account of all aspects of the patients life, rather than looking for specific 'signs' and making assumptions about why they occur. A diagnosis should arise from looking at the complexity of those 'signs' and their impact on the individual, and other factors (psychology, history, family relationships, mental health etc). As i say, not arguing with the suggestion that the incidence of autism among girls is artificially low, just pointing out some flaws with the indicators highlighted in this specific article...

 

[bid]

I would agree - and add also that every parent of autistic girls has heard the same thing... that's the point I'm making - you can't look at or draw conclusions from any behaviours in isolation, or make predictions about particular behaviours being present (i.e. 'he/she can't be autistic because he/she makes eye contact'...) the logical conclusion of my argument isn't that 'nobody has autism' but that autism isn't defined by any one, or even several, aspects of behaviour that apply to pretty much everyone. The logical conclusion of that is that everyone does have autism!

A diagnosis of autism should encompass full holistic assessment that takes account of all aspects of the patients life, rather than looking for specific 'signs' and making assumptions about why they occur. A diagnosis should arise from looking at the complexity of those 'signs' and their impact on the individual, and other factors (psychology, history, family relationships, mental health etc). As i say, not arguing with the suggestion that the incidence of autism among girls is artificially low, just pointing out some flaws with the indicators highlighted in this specific article...

 

 

But any succinct article or information leaflet by definition will present a list of 'signs'...and a list of 'signs' is where most of us, I would guess, started to have concerns about our own autistic children.

 

I think that in your desire to avoid autism becoming aspirational ('geek chic' was it?) you may risk making the front-line, first stop information too complex and obscure for the concerned parent or interested individual.

 

Bid

Edited April 14, 2009 by bid

[baddad]

I think that in your desire to avoid autism becoming aspirational ('trendy geek' was it?) you may err on making the front-line, first stop information too complex and obscure for the concerned parent or interested individual.

 

Bid

 

Maybe It's not just 'aspirational' and 'geek chic' though - there are many, many other reasons why a diagnosis may seem attractive to an individual or parent: basically any aspect of 'why' in anybody's life (or that of their child) that they find discomforting or challenging...

If a child with a dx of autism, for example, behaves aggressively then that will often be 'blamed' on autism. If that child didn't have autism then it might be ascribed to (i.e.,) 'peer pressure' (it's not him - it's the others) or social conditions (he lives on a sink estate - what else do you expect), family background etc etc... Even - 'well the poor kid lives in upper-middle luxury, goes to a good school and has a home life that any child would aspire too - No wonder he's an arrogant, over-indulged brat'...

 

It's a very complex issue, and I've certainly not got the answers... maybe someone like TA as, but if so, he's presenting his arguments - in this article at least - very badly.

I'm all for wider knowledge, and do agree that first stop information shouldn't be too complex or obscure, but that does have to be balanced, otherwise you're not promoting wider knowledge you're promoting wider ignorance...

Most people's perceptions of autism (general public) are still hugely coloured by 'Rain man' and perceptions of savantism - so peeps at the business end of autism like TA /SBC should be really really aware of how dangerous stereotypes can be...

I'm gonna bow out of this one now, as it seems to have wandered a bit from the original topic

 

L&P

 

BD

 

Oh - PS: quick addendum:

 

But any succinct article or information leaflet by definition will present a list of 'signs'...and a list of 'signs' is where most of us, I would guess, started to have concerns about our own autistic children

Yes, I agree - but again in recent years this seems to have been turned on it's head... in many cases (as with ADHD and Dyslexia before it) it is no longer a case of a concerned parent seeking an answer to their concerns, but seeking a rubber stamp for the home diagnosis they have already made. That's dangerous, as clinicians making diagnosis are dependent in many ways on the information parents give them rather than the limited direct observation they have the opportunities to make...

 

L&P

 

BD

Edited April 14, 2009 by baddad

[Sally44]

But behind all this behaviour, and lack of ability or understanding at varying degrees for those on the spectrum - there are ways of assessing it. For example assessing Theory of Mind. Regardless of how well your language skills are, you can assess theory of mind. And interestingly some non-verbal autistics may have the same or even better theory of mind than some high functioning aspergers. It is all about basic skills and whether they are present, and if so to what level, and what impact do those basic skills on the growth of higher skills.

And every child is a different combination of strengths and weakness. But if you take it all back to the basic skills you can quite easily identify how any individual is affected. But those types of assessments just don't appear to happen. I tend to think if it like a pyramid. And at the level where professionals are observing our children is usually about half way up the pyramid. You need to go back to the foundations and see what skills are there and which are missing or which are weak.

[baddad]

I tend to think if it like a pyramid. And at the level where professionals are observing our children is usually about half way up the pyramid. You need to go back to the foundations and see what skills are there and which are missing or which are weak.

 

 

Sorry, Sally, I may have misunderstood, but are you saying that professionals are less likely than parents to make an accurate diagnosis because they don't look at the whole picture?

 

[Mum of 3]

 

Sorry Bid, sorry Mumble... I wasn't intending to hurt anyone's feelings.

 

The point i was trying to make (badly, I see that now!) is that this article makes it look as though the difficulties faced by girls on the autistic spectrum are no more challenging than those faced by any adolescent (girl or boy) who is trying to 'fit in'.

This article, in my view, makes sweeping generalisations that trivialise the difficulties faced by children with ASDs by making them sound like the difficulties faced by any other girl.

 

I am sure that Tony Attwood is right when he says that girls are , for want of a better phrase, 'under-diagnosed', due to the nature of the diagnostic tools which look more at typically male behaviours than typically female. I am sure that there would be a benefit in researching females on the spectrum and developing a diagnostic framework linked to that research. I also know that girls, even those with profound difficulties, tend to be quieter and less difficult in school than boys with similar difficulties (in the main...there are always exceptions), and this can result in them recieving less support (squeeky wheel again!).

 

I just don't think the article put this forward in a way which your average man/woman in the street would understand.

 

This is what I was trying to point out when I wrote:

 

I'm sure that there is much more to all this than the article is suggesting, ...The problem is, the way it stereotypes ASDs even further for the majority of the population...

 

[Kathryn]

I'm late to this disussion but I've been following it with interest. My inlaws drew my attention to the original article while we were staying with them over the weekend, so it was gratifying to be able to discuss the issue with them.

 

Yes, the article makes some overgeneralisations about ASD but it raises an important issue and it's great to see it aired in the high profile media. Although I believe ther has been a small improvement since my own daughter was dx' d 5 years ago, girls with AS/HFA are still relatively poorly served by the health and education systems. I recognise a lot about my daughter from the description in this article. Perhaps it's not so much that girls and boys with AS present differently, but they react to the stress and challenge that AS causes in different ways. Girls and women tend to keep quiet and turn stress inward and this doesn't get them much help from the professionals - little girls are not usually hitting out at their classmates and running away and they don't tend to grow into 6 ft teenagers who can cause serious damage with their aggression. Serious concern about behaviour at school is usually what prompts the parent or school to look for an explanation which leads to an eventual dx, and for girls this doesn't happen until later, perhaps not until they have been through the mental health system and had other labels attached to them first.

 

K x

 

 

 

 

[Karen A]

I'm late to this disussion but I've been following it with interest. My inlaws drew my attention to the original article while we were staying with them over the weekend, so it was gratifying to be able to discuss the issue with them.

 

Yes, the article makes some overgeneralisations about ASD but it raises an important issue and it's great to see it aired in the high profile media. Although I believe ther has been a small improvement since my own daughter was dx' d 5 years ago, girls with AS/HFA are still relatively poorly served by the health and education systems. I recognise a lot about my daughter from the description in this article. Perhaps it's not so much that girls and boys with AS present differently, but they react to the stress and challenge that AS causes in different ways. Girls and women tend to keep quiet and turn stress inward and this doesn't get them much help from the professionals - little girls are not usually hitting out at their classmates and running away and they don't tend to grow into 6 ft teenagers who can cause serious damage with their aggression. Serious concern about behaviour at school is usually what prompts the parent or school to look for an explanation which leads to an eventual dx, and for girls this doesn't happen until later, perhaps not until they have been through the mental health system and had other labels attached to them first.

 

K x

 

I think you make a very good point.

 

I am not actually talking so much from the perspective of mum of Ben.I do remember too painfully being mum to J two years ago.

J does not have ASD.However he did suffer from anxiety and panic attacks.He was out of school for most of his last half-term at primary school.Nobody at school recognised that he was not coping because his behaviour and accademic ability were excellent.That would never have happened to Ben because he lets the whole school know when there is a problem.

J is doing really well now.He has just returned from a week skiing and we are really proud of him.However we were very fortunate to have some good support because we were known to CAMHS because Ben had difficulties.Js primary school to this day do not recognise that he had difficulties because he is bright and never caused a problem. Karen.

 

[Mumble]

little girls are not usually hitting out at their classmates and running away

I did. Both.

 

I completely agree that there's a need for more understanding of different presentations, but I'm not convinced of the need for gender specifics I'm sure there are some ASD boys who don't fit the poor behaviour, hitting out profile too.

 

[Kathryn]

I knew someone would come along and prove me wrong - sorry Mumble . I know I'm generalising too and there are likely to be boys and girls who don't fit the stereotypes but I still think the trend is as I have described it . Even where girls are outwardly challenging they are likely to be perceived as less threatening and more easily containable, in my opinion, and therefore less likely to get the help they need.

 

And the world of AS post diagnosis is still a very masculine one. I think it's ridiculous, for example that there are still AS specialist schools around which only take boys - how can that be justified? Even where girls do succeed in getting a specialist education or attend any support group they are likely to be in the minority and have to join in with stereotypical male pursuits.

 

Sorry If I sound bitter - but the senco at my daughter's former school told me that my daughter's needs were not recognised for so long because she wasn't like any of the 7 boys at the school who had an AS diagnosis.

 

Greater awareness of individual presentations is a must, as you say Mumble, but raising the profile of girls on the spectrum generally is at least a step in the right direction.

 

K x

[chris54]

My stepdaughter E, now 20, who I am sure has ASD. Up until she was about 8 her grandmother was her main carer. Granny recognised that she had some problems at school was convinced that the answer was "Cod Liver Oil".Or its modern equivalent. When I first met E, when she was 6, she was not a child that you would want to take out anywhere. My now wife, her mother seldom took E out on her own because she could not handle her behavior.

 

I am afraid to admit, not knowing any better at the time, that I put her behavior down to bad parenting.

I can still remember having this wriggling, screaming thing hanging on the end of my arm. Right or wrong. I coped with this with a combination of brute strength and stubbornness.

 

Brute strength in as much as I could hold her at arm length keeping out of reach of kicking feet. And stubbornness I was not going to be the one to give up. Granny would just keep her fed a constant supply of sweets if they ever went out which was not often.

 

By the time we got marred and the children come to live with us, granny had had enough. But at the same time E's behavior had made a big improvement. This of course reinforced in me that it was Granny's influence that was the problem as far as behavior was concerned. In a way you could say I'm right in that but I/we failed to see the underlying problems as by this time it was seen that her problems at school were just down to her not trying.

What we see now is that she has a problem with processing information. If she is asked a question, there is always a delay before you get a response and often the answer has very little to do with the question.

She is currently learning to drive but has failed the test twice due to hesitation.

 

She moved back with Granny about 18 month ago, partly due to there being an animal care college near by which she wanted to go to.

Granny sees that E has Problems, and guess what, its back to the "Cod liver oil".

I do worry about E future I don't really see her being able to follow her dreams other than in a protected environment.

 

On another point. When we talked about my sons ASD Granny said, "What is he taking for it." and "how long will it take for him to gets better".

 

 

[Sally44]

Sorry, Sally, I may have misunderstood, but are you saying that professionals are less likely than parents to make an accurate diagnosis because they don't look at the whole picture?

 

 

The point I was trying to make is that girls tend to be better verbal communicators than boys as a generalisation. And there is also different ways of showing stress or anxiety as other people have posted, depending on the gender of the child. This isn't always a 100% true, but there is still this gender difference. So, if you have a child with an ASD who appears to have good language skills (we are talking about females, but it applies to males just the same), then why don't professionals assess for theory of mind? I have been told by SALT and AAT and EP that ToM is something that those with ASDs either don't have, or they have difficulty with. But they don't and won't assess for it. Well not through my LEA anyway. And ToM affects language comprehension and relationships. (I'm not saying that parents are more qualified than professionals. But parents live with their child 24/7 and should be listened to by professionals - but I wasn't suggesting that anyway). By this sort of testing and assessments you would surely pick up those who are potentially on the spectrum because they have this difficulty and NTs don't. Or can NTs have problems with Theory of Mind, I don't know??

[Gordie]

Well I, for one, like the sound of more female Aspies.

 

James