Here some suggested organisations that offer expert advice on SN.
triad of impairments - imagination - new info(51 Posts)
Creeping lurgy*: I was at the same conference (and might even have sat next to Leonie without ever knowing!) and I think it's important to make the point that the clarification was specifically in relation to *girls on the spectrum. I think she was saying that girls may not have the same amount of restricted interests / repetitive behaviours/ lack of cognitive flexibility as are seen in many boys, but may still be on the spectrum, and that is where the clarification that 'social imagination' "counts" for diagnostic purposes and may be what you see in women and girls on the spectrum.
My pet theory is that in diagnosing girls you need to take a long term view; you may not see anything unusual in one meeting or one conversation ( or you may...but not always) but the social and relationship history will hold the clues. I don't think the ADOS works so well for girls, for example...
*Always in wonder*: 'PDA type' kids are kids on the spectrum who are 'actors' rather than 'reactors'. Rather than melt down in response to a situation or show anxiety by worrying or crying in anticipation their extreme anxiety prompts them to act to avoid the situation. The behaviours they will engage in to avoid are often devoid of social boundaries so very hard to cope with (one kids pees on his mother's bed, for example). I don't like the PDA label myself (can't be diagnosed by a psychiatrist as isn't in the DSM IV, for starters, which makes parents feel we are fobbing them off) as I think it's just an 'active - avoidant' form of autism. Never met a PDA kid who wasn't on the spectrum. No doubt at all the manifestation exists, but my view is it is definitely part of the spectrum. Just my opinion of course. Thank my lucky stars on a daily basis that my boy is a reactor (--even if he did melt down yesterday for 20 mins, aged 11, because there was no custard left--)
Leonie - apols, crossed several of your posts there
Yeah, that is what we often do too - we talk about a demand avoidant pattern of behaviours in an autistic profile. I agree the reframing of behaviours as 'anxiety based' rather than 'naughtiness based' is very helpful indeed.
I've always wondered about anxiety and aspergers, and the fact that people can suffer from anxiety without having aspergers, yet most people when they are colossally anxious behave in a more "autistic" way (eg become more self-focused and incapable of dealing with external distractions, because they are having a hard enough time coping with their own concerns and just feel even more panicked if they try to think about anything else). Is the difference that the highly agitated/anxious person without aspergers is fully aware of the fact that they are closing down to a certain extent, and doing it deliberately in order to cope with their anxiety, whereas someone on the autism spectrum is unaware of that process taking place, because they have no state of non-anxiety with which to compare their behaviour???!!!!!
Rabbit - this is just my opinion, others may well have different opinions. I think the nub of it is the 'different in intensity, scope or duration' just like the imagination thing.
Fact - there is no 'autistic' behaviour. Behaviour which people think of as 'autistic' is normal behaviour triggered in a context that would not usually trigger it in an NT person. For example, screaming meltdown involving total loss of control followed by rocking in a corner with head over hands - triggered by sudden death of partner in a road crash - absolutely appropriate. Same meltdown caused by lack of custard to go on apple pie (as in my house yesterday) - not appropriate.
So the anxiety responses you describe above are 'ordinary' responses to extreme stress - but the extreme stress is triggered by something much 'less stressful' (to the NT eye) than 'deserve' such a response - such as going to work a different way or having a supply teacher in the classroom, rather than having to give a major presentation in front of the entire management team, upon the outcome of which your job is dependent.
I don't think the processes are any different or possibly even any more 'deliberate', but they are triggered by 'smaller' or 'trivial' stressors.
That's how I think of it, anyway...
Ilike, great description
This whole thread is brilliant... thanks Leonie
Thanks, ilike - that's really helpful. Although it sort of confirms my feeling that when my ds was younger, his behaviour was more apparently "autistic" than it is now because he was highly anxious but did actually have good reasons to be anxious... I don't see how a child could fail to be anxious if he was considerably delayed in learning to move as a result of low muscle tone, extreme hypermobility and poor motor planning skills, and so had no real control over his environment at an age when he was hyper aware of what was going on in his environment and had all sorts of genuinely unpredictable threats (eg toddlers his age) coming over to him and knocking him over (from which position he could not get up without help) without having any means to defend himself! I know if I were an adult stuck on the floor, unable to reach what I wanted or get myself from lying back to sitting, unable to express myself clearly verbally, unable to defend myself or get away from people invading my space and unable to express my free will in any meaningful way, I would be very anxious and might start soothing myself with repetitive activities which could be done without moving, like counting repetitively, etc...
ilikemysleep, thanks for your clarification. It is so true that the female expression of autism has not had the attention it deserves until recently, and that the current diagnostic criteria are based on males. Good that it is finally changing! But it may take a while before it is established, what with the view of Baron-Cohen's 'extreme male brain' being quite prolific in the media.
I'm not sure it's fair to call it the "female" expression of autism, either, though. My ds is a boy, but according to all these descriptions, has an incredibly female expression of his autism!
I agree rabbitstew, that "genderising" autism is not helpful to anyone. For one, it reinforces stereotypes about what is considered male and female behaviour. Only in the short term it may help with acknowledging the way some people (perhaps the majority of which is female?) express autism is indeed autism (and not OCD for example). But in the long term it will do more damage than good.
I too had a lightbulb moment when reading this thread. It inspired me to write a blog post about it which you can read here:
I've said it before, but Mumsnet is such a lifeline in helping us to make sense of, and understand, our son's condition. Thanks everyone.
Yeah. This is a great thread.
Love this place.
DS1 used to have a meltdown regular as clockwork every Saturday morning when it was time to leave for karate culminating in him lying on the floor in a foetal position covering his ears. But I was unable to end it by cancelling karate as he would then have another meltdown ending the same way about not going to karate. Catch 22, damned if you do, dammed if you don't. I understand his behaviour better now but I don't know how to deal with extreme demand avoidance other than not making demands. When I tried short communication a la 'how to talk to kids..' eg 'DS, washing-basket' he had no idea what I meant ('yes, Mum, its a washing-basket') and needed literal step by step instructions.
One of the most insightful things I have done since starting on the ASD thing is to attend a talkability programme with our SaLT.
The big thing that I got out of it, was the role of playing imaginatively and socially with my DS.
I had not really realised how he cannot do this until it was spelled out for me.
For example, I was playing with DN 3yo while on the course. We had a chat about his tractor which he was playing on. I pretended to fill it with diesel. He pretended to pay me. I asked if I could check under the bonnet. He agreed and pretended to open it for me.
Here's where it jumped from what DN can do at 3 to what DS cant do at 7.
I said 'what this underpants doing in your engine? and pretended to pull one out. DN stopped, roared laughing, then got with the change in the game, and said 'thats where I keep my underpants!''.
Since then, I play with DS and constantly try to introduce this flexibilty but he hates it. Gradually, as I keep trying this, he gets better. But I cant do it if he's upset or tired.
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