baddad
-
Content Count
9,493 -
Joined
-
Last visited
Posts posted by baddad
-
-
Hi again, Rainbow/Darkshine:
The point I was trying to make it that you can't draw that line that 'my MH issues now arise because i am/was an undiagnosed autistic' - you can't possibly know what MH issues you would have had had you not been an undiagnosed autistic...
All the confusion, isolation, lack of understanding you now identify as 'autism related' could have been MH related - just as they are for the 1 in 4, 1 in 5, 1 in 10 people mentioned in the statistics provided by the Mental Health Foundation. It might be very reassuring to look at it all retrospectively and make assumptions that if you hadn't been autistic you wouldn't have had the problems, but the statistics regarding non-autistic people and MH issues suggest that's probably not accurate.
L&P
BD
-
It might be better than 'we can't deal with your MH issues because you're autistic' attitude that they have towards adults at the moment.
The problem is that there are two categories of people with HFA - the children who will hopefully get diagnosed early enough to reduce the MH impact, and those children and adults who have been left without a diagnosis and have secondary MH issues as a result. I have to admot that I don't have enough personal experience of people with classic autism to know whether secondary MH issues are common.
Hi rainbow - I do agree that the two things need to be responded to properly, but i think there's an inherent flaw in the 'model' you've outlined, because it assumes that the mental health issues arise from ('as a result' of) autism. That's actually an endorsement of precisely the attitude you've outlined in your first paragraph, and it is, IMO (and 'logically'), a dangerous and probably wrong assumption.
The Mental Health Foundation states that:
-
- 1 in 4 people will suffer some kind of mental health problem in a year.
- About 10% of children have a mental health problem at any one time.
- Depression affects 1 in 5 older people.
So without making any adjustment whatsoever for autism the fact is that 1 in 4 autistic people will suffer some kind of mental health problem in a year and would do so even if they weren't autistic, that 10% of autistic children would have a mental health problem at any one time and would have it even if they weren't autistic, and 1 in 5 older autistic people would suffer depression even if they weren't autistic...
Of course, it's not that straightforward, because presumably autistic people are included within the 'average' figures and we don't have a statistic for the percentage represented. having said that, however, if - as is being stated - MH issues among the autistic community are being labelled 'autism' rather than MH and autism hasn't been to date included as a MH 'factor' then autistic people would actually be under-represented in the figures
Anyhoo - what that means in a nutshell is that in terms of autism and mental health issues there are, in 1 in 4 / 1 in 5/ 1 in 10 cases only (at best) casual or indirect 'connections', and what is actually being labelled 'autism' is actually a co-morbid.
My own concerns - beyond the damaging label/implication that autistic people are mentally ill - is that mental illness is being inappropriately labelled 'autism' (a fine, but important distinction and perhaps a key issue in the whole question of the 'autism epidemic'), and that people's mental health problems are not being accurately identified and responded to. This would apply equally to autistic people with MH co-morbids, to people with MH issues wrongly identified as autistic and their MH issues wrongly identified as autism, as well as potentially impacting on the way new referrals are perceived and responded to regardless of the autistic/non autistic status of the newly referred patient.
L&P
BD
-
-
...that was me being a Mod
Oooooooh ... I thought you prefered ponies to Lambrettas... No squirrel's tail on an aerial on the back, though, I'm guessing? Po' li'l squirrel! Do they sell Parkas with targets on the back in 'Tiny'? Perhaps you can pick one up in Barbie's '60's range...
-
You have pretty well summed up my own thoughts upon reading what follows your post. It's the relentlessly negative tone of certain contributors that's most depressing.
TOTALLY agree with that one, lil plum, though I'm sure you and I have very different views about what constitutes a 'negative tone'.
-
Asperger’s is most primarily notable for not appearing interested in forming human bonds. [The degree to which Asperger’s kids actually are painfully aware of their trouble making bonds is debated in the literature. Nevertheless, they typically appear uninterested.] NVLD kids, though, do typically appear interested in human bonds
Interestingly (possibly?) - this is a distinction Ros Blackburn has made regarding autism and asperger's - that autistic people just aren't that interested socially other than indirectly whereas people with AS are... never having heard of NVLD before (and being somewhat wary of the ever-expanding terminology that's arising from ever expanding definitions), it's interesting to see this in terms of a 'continuum of a continuum of a continuum', iyswim(?).
It may, however, be useful in diagnostic terms - once definitions are precise enough to make differentiation possible - for separating what I have occasionally previously described - for want of another term - as 'New Variant Asperger's' from what I (and the DSM criteria up to this point) have always considered Asperger's to mean. I think that distinction is a very important one - for autistic people and Asperger's/NVLD(?)alike, and it does worry me that proposed changes to DSM will will blur the boundaries even further rather than defining them... In terms of that venn diagram mumble mentioned, we're soon going to have one bl00dy great big circle that encompasses everyone -and I do mean everyone - which would be fine if society wasn't made up of subsets and cliques and prejudices and fashions and..........
L&P
BD
PS: Sorry, kasia, that's slightly off topic... I'd agree with Kathryn that you should mention the existing dx at your appointment, along with any other information you've gathered that can inform them. I think full holistic assessment and disclosure is a hugely important part of dx - including all those factors that have nothing to do, on the surface, with autism or AS like family make-up and dynamics, social networks, health issues etc. A professional can only work with the information they're given (and some limited opportunities for observation), and if that information is 'filtered' for any reason they're more likely to reach the wrong conclusions.
HTH
L&P
BD
-
Thing is, would it be an equal discussion though? Cuz someone like you is so good at twisting things people say I wonder if you would even give people a fair chance of explaining themselves before you elegantly rip their words apart? Or could you hold back and try to understand what is being said and allow people the opportunity to justify themselves? Could you resist so brilliantly using the things people say against them or could you accept that not everyone can say things 100% perfect all the time?
Yes. Of course that's what it is; 'twisting things people say', elegently and brilliantly ripping their words apart... couldn't be anything as simple or reasonable as disagreeing with them and/or finding the assumptions and conclusions they reach unreasonable, could it? How could it be an equal discussion? The above is a prime example of why that can't happen, because you've already set out the parameters; a victim (or group of victims) just trying to get along and a nasty ol' ogre hidin' under the bridge just waiting to pounce! And while you'll say that's another case of your words being twisted, or offer the 'justification' that it's just your nasty ol' autism that stops you being able to express yourself properly I think it would be patronising - however much you might want me to patronise you - to pretend that you didn't know exactly how your words would be received or perceived, either by me or by those who are willing to play along with you. I don't ask anyone to 'justify themselves' and I certainly don't need people to say things 100% perfect all the time, but I do find all the posturing, pretense and role assignment frustrating when I treat people who quite clearly are literate and capable as equals. I find it even more frustrating (frankly offensive) when they want to have their cake and eat it by 'playing up' or 'playing down' their autism / intellect as and when it's convenient.
L&P
BD
-
I don't know tbh - but in a way, why not? I've seen people with disabilities talking about their experiences on tv and in newpapers, and even face-to-face on occasion, and it is incredible how many of these people manage to turn their disability into a positive in their life - I'm sure there are just as many people (if not more) who do the opposite and let it ruin their life even more - but people do exist who try to make the best of things.
No, I don't think there are many who 'make disability a positive in their lives' - they just live life with a positive attitude and don't go looking for negatives all the time. They don't compartmentalise their lives into good bits and bad bits and label all of the bad bits 'disability'. And having worked for years with disabled people my own experience is that there are not 'just as many (if not more)' i.e. physically handicapped or learning disabled people letting it ruin their lives even more, and if you haven't picked up on my opinion about that yet you really are cherry picking!
I would love to talk about ways in which autism isn't to blame for everything bad, but to do that we'd have to talk about the things people are saying are 'bad' and 'autism', which takes it from general and non-specific to personal and specific, which isn't going to go down too well is it? How long could we realistically (howvere logically and politely) talk about a specific behaviour in a specific scenario without someone having a 'meltdown' and shouting 'victim'?
Anyhoo this is going peretty much the same way these threads tend to go: circular. So if you want to know my feelings about how to 'positive up' autism read all the posts I've made about challenging the negative assumptions and stopping using autism as an excuse for every flaw, every weakness, every hang-up that an individual might have.
L&P
BD
-
Hmmmm our family dynamic is quite a complex one and there are a few things in the mix, I suppose I asked my husband to back off is Christian is continually expressing that My husband is on his case so to speak, I do think that the things my husband asks Christian to do he is capable for his age and reasonable but myself and my hubby see things differently on what battles we sometimes choose, Also I do have Christians Real father in the mix who is a piece of work himself, it was a very bad relationship that I do not need to go into here but the man is very manipulative and influences Christian to disrepect my hubby ie, you do not have to listen to him he is not your dad! I am! etc etc, If it was up to me he would not have a relationship with his children but I know the importance of a child maintaining contact with there father for them, also I have no legal power on my side, Fathers have rights now, which I totally agree they should but situations are not always as cut and dried as they seem on paper.
Asking my hubby to back off was basically a last resort for me as things had got that bad last Friday that we decided that we could no longer go on as a family, It was the best thing to disolve the war that was happening between them so to speak, I do not like it all but with Christian presenting with Anxiety I was at a loss what to do. Taking the full responsibility meant that Christian could not complain my hubby "was on his case".
hi again dixie -
Just a quickie on this particular point: Yep, it is a huge problem when the grown-ups won't play nicely, and in a situation like the one you describe (whoever is rocking the boat, M or D or stepwhatever) you've got a weak point ripe for exploitation by the kids involved. I can fully understand the reasoning to taking SD out of the equation, but think the problem with that is it just reinforces/confirms the inappropriate stuff. Dad says SD hasn't got a right of reply, now mum's confirming it...
IMO you'd probably be better off tackling it the other way - a united front from you and SD and the very clear message that on this issue at least 'real' dad is in the wrong. Obviously you've got to approach that in a way that doesn't make real dad the 'baddy' or undermine him, but there's no denying he is in the wrong and your son needs to know that, and to know that while SD isn't his biological dad his role in the family is that of father and he will be treated accordingly. I'd be tempted to go the other way, in fact - you step back and give SD the total responsibility for discipline, with you only stepping in to back him up.
Thanks, BTW, for seeing my last post for what it was rather than taking it as some sort of personal attack. Very refreshing!
Hope the above is helpful
L&P
BD
-
But yeah, this forum is only "safe" if you are prepared to have every little word pulled apart, judgements made on a mere paragraph of your life, challenges for why you are here and the verification of any existing or not existing dx.
Definitely two sides to that particular observation, eh?
I've said a couple of times that I would find it interesting to see a clearly defined list of positives and so far nobody has written oneand i asked why you feel autism, exclusively in the field of disability, should be a 'positive experience' or virtue rather than just 'part of a life'?
L&P
BD
-
The world can be a very harsh place and this forum should IMO be a 'safe place' to reveal our vulnerabilities.
Perhaps I am being naive...?
depends what you mean by 'a safe place'... If it means being able to say whatever one wants about autism - whether it be 'your own' autism or a generalisation - without ever being challenged or without ever having to listen to other people's POV then yes, I think you are being something, but I'm not sure naive is the word. What may seem like a genuine attempt to understand / improve oneself may seem like navel-gazing (or denial, self-indulgence, projection, blame, assumption, posturing, appropriation, attention seeking... quite a lot of different things) to another...
It's quite subjective, because what some people see as 'negativity' is for another something positive, and vice versa... I don't see any positives in moaning about how desperately hard it all is or how much of a victim autism makes people or any of the other 'can't do' perspectives that seem represented in the vast majority of posts on the forum, but I can see lots of positives in the posts that challenge those perspectives and tend to get shouted down for doing so. But perhaps I'm naive, and autism really is a unique condition that turns all logic on its head and makes a virtue of negtivity and self-disablement / projected disablement? Got to say, I haven't seen much evidence of that - If I look in the most general terms at what's happened over the past couple of decades the most profoundly affected disabled people seem to be facing exactly the same problems they were back then, while the hugely expanded numbers of 'HF' autistics actually seem to be achieving less.... less of them able to 'cope' with going to school, less of them able to 'cope' with their anger issues, less of them able to understand the basic rights and wrongs, less of them able to eat a normal diet, less of them able to sleep at night, less of them able to live without medication, less of them able to....
I don't know how you dress those things up as positives, TBH, but if challenging and questioning those things and having higher expectations for autistic children than that is seen as a negative (which invariably seems to be the case) many, many parents and professionals must think they are(?)
L&P
BD
L&P
BD
-
Hi Dixie -
as you've asked... IMO 'PDA' (and 'ODD') don't really exist - they're just recently coined tems (coined being the operative word because the people who came up with the acronyms and the psychobabble surrounding them are minting it!) for well-established behavioural 'norms'. They're prettied up a bit, to disguise the fact that it's pretty basic stuff, but effectively the single most important 'technique' and the whole thrust of intervention is to ensure that parents/carers etc aren't inadvertantly rewarding negative behaviours. That's been a key perspective on behavioural management pretty much since the begining of time
. Firm boundaries and expectations are seen as key/vital elements of support, but the emphasis is made (particularly with PDA) that these should be enforced 'non-confrontationally'. I think that latter consideration undermines the whole process, but I'm sure many parents take comfort from it because it effectively removes the imperative to enforce sanctions (lets face it, no matter how you pretty it up no kid - especially an aggressive one - is going to see 'no' when they want a 'yes' as anything OTHER than confrontational, are they?). Before anyone jumps in 'confrontation' does NOT mean abuse - it just means tackling the problem effectively and in a straightfoward way rather than enabling the child to control and dicate the situation and effectively take the adults role in what should be a much healthier dynamic.Obviously MO's regarding PDA and ODD aren't gonna be popular ones among parents or professionals who, for whatever reason, are buying into or selling this stuff, but then I haven't got a psychological or financial stake in it! I really really do think it is all very very simple, no matter how much window dressing or jargon you surround it with: A child who gets his/her own way by avoiding doing what he/she is asked or by defiance will continue to avoid doing what he/she is asked or being defiant. If there are genuinely meaningful (to the child) sanctions imposed and negative (to the child) consequences they won't. Both are new 'boom' industries (just like autism) with incidence and dx rising exponentially. We can assume all sorts of reasons for that - better recognition, etc etc - but lets not overlook the very real changes that have occured in parenting styles, professional responses, and 'typical' family dynamics while that growth has happened.
Hope that's helpful, even if only as an 'alternative' perspective.
With regard to your husband not sanctioning your son I think this is totally misguided, and I think if your son now feels empowered to verbally abuse your husband without your husband having a 'right to reply' it is totally predictable that it'll get worse - unless the sanctions you impose when he does so are powerful enough disincentives to overcome the control 'buzz' that any aggressive 13 year old would get from being able to pee all over their father's authority. TBH, if I was a father put in that position you'd be getting some fairly obvious symptoms of demand avoidance and defiance from me too!
L&P
BD
-
Also discussions like this one interest me - it interests me to think about different things, that and I have a tendency towards the negative (I am involved in BD's positive post too - although you could argue its not that positive - but there's still time).
You say people should get realistic and get perspective - we are doing that by discussing the negatives too, it helps me at least - for a number of reasons.
Darkshine
Hi darkshine - I think the issue, as you've said, is that there doesn't seem to be much 'positive' appearing in the threads at all - as you've rightly pointed out - and that the perspectives arrived at by discussing negatives pretty much exclusively are almost certainly going to be negative perspectives.
Yes, you could argue that the other thread is 'not that positive', but purely because many of the posts have been defensive / passive aggressive and there seems a general unwillingness to consider any of the observations that have been made about people taking a more positive view of themselves rather than dwelling on the negatives and labeling them all 'autism' regardless.
Leaving all other aspects of bid's post aside I totally agree about the need for more 'realism and perspective' than we're currently seeing in many threads, and the amount of 'over-analysis' (a much politer word than springs to my mind!) going on.
As far as the other aspects of bid's post do go, I hope there is some positive and reassuring news soon.
L&P
BD
-
Hiya Bernard -
(hope you don't mind, but I googled berchukit as I too was wondering where you suddenly appeared from!)
Really enjoying your stories - very inventive and funny - but like many others I'd be interested to know a bit more about the person posting them. Not suggesting in any way that you should post your autobiography or anything like that, but perhaps you could post something about how you write your stories, where you get your ideas from or stuff like that? (and if you say 'by typing on a PC' or 'out of my head' I'll take it as a 'mind your own business'!)
I actually quite like the sound of 'custard beer and filthy lemon juice' (well not the filthy bit, maybe), but it could be an acquired taste(?)
Anyhoo, as I say, liking the stories and the stream of consciousness kind of feel of them, but an intro to the writer would be nice too... I'm also a little bit concerned that maybe some of the stories/names/scenarios might relate to things that have happened in your life... That's fine generally (all good writers draw on their experiences), but I hope you don't sail too close to the wind and end up treading on any toes or putting your own in jeapordy from potential treaders!
L&P
BD
-
Hi Jeanne -
Sorry to hear things are going off the rails again. It must be really upsetting and scary
Haven't really got any advice to offer, but I do hope they/you can find something to break the cycle of aggression and restraint.
While it must be heartbreaking to think of Glen being unhappy and asking for you/home I think it's also important to keep in mind the reasons you elected for residential care, and the perspective that when these behaviours were happening at home you weren't able - for very practical/realistic reasons - to intervene in the way that was sometimes needed. If you are satisfied (and from the posts you've made I think you generally are) that the placement is the best option for Glen you need to try and put the emotions aside when these situations arise to concentrate on the long term benefits. I'm not in any way underestimating how hard that must be
, but in practical terms I think it's the only way you can look at it, iykwim...Really hope the visit home is/has been a good one, and that it pays dividends in the way the care staff have predicted.
Very best
BD
-
Right... another go:
I don't know about anyone else - but I'm not really feeling much positivity in this thread
Hi darkshine
Well it has wobbled a bit in places but the wheels haven't come off yet! I think it might be one of those 'gutter and star' situations like i mentioned in relation to one of Sesley's posts... I think it's actually quite positive to be discussing issues like 'projection' and for people to acknowledge that it's easy to fall into the trap of seeing all negatives as 'autism' while overlooking the 'whole' person and the positives in that persons life. Okay, there haven't been many (any?) posts saying 'oh this is something positive in my life and it's all because of my autism', but TBH I wouldn't expect there to be, and i'd be equally concerned if people were making those kinds of 'projections' onto autism and making a virtue of their disability...If you went up to someone in a wheelchair and asked 'What's good about being unable to walk?' I'm guessing they'd be hard pushed to come up with lots of positives. Ditto going up to someone who was affected by dwarfism and asking them 'What's great about being a dwarf?', or asking someone with tourettes to list all the wonderful gifts their disability has bestowed upon them. If you asked them for a list of negatives, they'd probably have quite a few for you to consider, but the crucial difference, in the vast majority of cases, is that they don't spend a great deal of time worrying or wishing - they just get on with the lives they've been given. Remember that lovely series 'Born Different'? Compare that to yer average documentary about autism - or come to that one that's got nothing to do with disability at all but just shows miserable and moody overindulged/underdisciplined kids treating their parents and teachers like s*** - and you'll see what I mean. Lets have some of THAT positivity around autism!
I don't think labels are a positive in some instances - I think they can be very negative - or have very negative connotations.....I agree. But it's not the fault of the labels - it's the associations those labels trigger in the minds of the people looking at them. In the past few decades representations of disability have changed massively for the better. The tired old models of 'victims' looking downtrodden and broken, of 'heroes' absailing down the sides of rocks in wheelchairs, of mawkishly sentimentalised down's syndrome adults playing party games at a totally age-inappropriate tea party have all been challenged, and the emphasis shifted to include images of disabled people as 'whole' people in their own right. We're starting to see the occasional disabled actor cropping up on TV when there's a part for a disabled character (Breaking Bad's an excellent example - a highly regarded, award winning TV series with a disabled main character
) rather than getting non-disabled actors to 'black up' - how great is that? (and it shouldn't be great, dammit, it should be the norm 
)But what do you get with autism? DAN marches and podcasts equating it to possession by demons (and that's PARENTS FGS)... Badly behaved kids wearing 'I'm autistic, what's your excuse?' T-Shirts kicking off while their parents ignore them and shout abuse at anyone who looks shocked... Newly diagnosed adults looking at their lives retrospectively and blaming every single negative they've ever encountered on their dx, becoming defensively aggressive if anyone should happen to point out that 'sh!t happen's', and it happens irrespective of wheteher you happen to be autistic or not... And then there's the 'experts' - be they they snake oil peddlars offering 'CURES' or inerventions, offering to fix the broken kids people have so unfairly been given or the charities and high profile advocates who are willing to go on the record for someone like Gary McKinon and offer the world their equivelant of an 'I can't help it' t-shirt for a grown man with the capabilities to hack into defence system computers.... They're the labels 'we' are offering the world. They're the labels 'we' are offering the media. They're the labels 'we're' endorsing. If 'we' want to see them changed, 'we've' got to start walking the walk and talking the talk rather than perpetuating the myths that are causing all the damage. Haven't we?
wonder how far Martin Luther King would have got if his vision for coloured people had been that they were all bleached white, or given drugs that achieved the same end? (Didn't do Jacko much good, did it?)
I wonder how the feminist movement would have fared if their ideology had been that women should have their breasts removed and grow penises?
But of course, it's not just about normalisation is it? There's the 'cure' thing too.. .and if we can't cure it, lets eradicate it, nip it in the bud... science may soon deliver the option of in-utero identification and eugenics...
Sorry, my 'lost' post from this morning was much more coherent... I've had a long day and i think it's starting to show...
In a nutshell, I'm just trying to say that there's no point moaning about labels if they're labels we're willing to actively promote and there's no point moaning about negatives if negatives are the only things we look for.
L&P
BD
-
I don't know about anyone else - but I'm not really feeling much positivity in this thread
I don't think labels are a positive in some instances - I think they can be very negative - or have very negative connotations.....Bums - just written a long reply to this and then lost it when going to post...
Will possibly come back to it later, if i get the chance/remember -
I had no intention of writing anything on thisthread but since I appear to be the person alluded to in the above few comments, I feel compelled to write a response.
Firstly, I would like to categorically state that I do NOT have a diagnosis and I did NOT receive a diagnosis over the phone.
Perhaps that is what my post implied but it was maybe more the way I wrote the post and my state of mind at the time or perhaps you joined the dots, Baddad and came up with a completely different picture than the one I was trying to describe.
The last few months have been incredibly difficult for me. The psychiatrist in question who I was told by my GP had said I had VERY MILD Aspergers (I term I know does not even exist) it would appear LIED about having a conversation with a person I had a short preliminary conversation with about the POSSIBILITY of pursuing a private OPINION. Of course, I have only the GP's word for it that the psychiatrist said to THEM that the result of this imaginary conversation took place. The psychiatist has since denied this.
Hi Lyndalou -
First and foremost, I wasn't alluding to anyone in particular. I have no idea whether your post was [the] one I'm refering to (but it really does not sound like it from the description you've given), and TBH I feel sure that there was more than one - I seem to remember one about a privately dx'd adult and at least one where parents have been been discussing the route to dx for their children... If you want to post a link to your post, i'll have a look and see if it rings any bells...
You speak very eloquently about how easy it is to get a diagnosis. The reality in my case is very different. Not only do I believe that the psychiatist lied about me, he also routinely turns adults down for assessment on the basis that HE knows nothing about ASD. He is also one of a number of psychiatrists in my catchment who I have on good authority DO NOT BELIEVE ASD EXISTS AT ALL or more specifically HIGH-FUNCTIONING ASD, you will no doubt be pleased to hear.I'm a bit confused by this, because on the one hand your saying the psychiatrist himself says he 'knows nothing about autism' and on the other that he feels qualified enough to say it doesn't exist?
I'm not challenging what you say, but those two things do seem somewhat incompatible, and what is the 'good authority' on which you base your assertions? If professional opinion, it underlines the point I made to littleplum about the difficulties in identifying potentially unreliable professionals (their colleagues cover for them) and if hearsay it would confirm something I've raised many times on the forum about there being a word of mouth 'grapevine' that directs people looking for dx towards professionals (private or otherwise) who tend to 'deliver' in terms of dx and professionals to avoid.Why do you think I would be 'pleased to hear' about a professional who does not believe ASD exists? What possible reason could you have for assuming that? For the record, I'll state that the thing I have a problem with is casual/inappropriate diagnosis, not the idea of diagnosis per se, and I would be equally concerned if I felt that there were professionals out there who were, as a matter of course, were not making dx's where appropriate to do so.
I actually mostly agree with your opinions with regard to raising children with ASD and I intend to bring my little boy up, yes taking his difficulties into account but I will be expecting him to learn manners, treat others with respect and ultimately rise above and accomodate his problems. Maybe in time he will look just as 'normal' as I do and to all intents and purposes 'be normal' to everyone he meets. Will this mean that just because (hopefully) he will function satisfactorily, his diagnosis of HFA will become invalidated? Just because he in time will view himself in a positive way(hopefully) AND functions satisfactorily in life, will he no longer have a disability? I know this, even though he will no doubt pick apart my parenting skills, I will love him and support him just the same way as my parents love and support me even though they have made many mistakes along the way.
Lynda
I don't know what you mean by this? I don't honestly believe that people with ASD can 'be normal' to everyone they meet... TBH I think there are absolutely millions of neurotypical people who can't even pull that particular trick off! We ALL have our problems, our insecurites, our hang-ups, our weaknesses and our strengths and we live in a world that's increasingly judgemental and unsympathetic and unforgiving when we reveal them. In some circles you could be a social pariah for wearing the wrong pair of trainers FGS!
What I do think, though, is that ASD has increasingly in recent years been a very useful peg to hang all of those sorts of insecurities, hang ups, etc etc on, and so many assumptions are made on the basis of that that it's becoming impossible to tell one thing from the other. In America there are increasing numbers of people being 'undx'd'... I don't know enough about the details of that but I have read the statistic in many different places. It MAY be that groups like DAN are influencing that, and that many of those people are in denial or being pushed towards denial of the dx's. It MAY be that certain interventionists and 'cure' peddlars are convincing people to reject their dx's. But it's also entirely possible that for some or even many of those people the reality was that people were a bit too quick to jump to the wrong conclusions, and autism wasn't a factor in the first place. Purely on the basis of what I've seen and read in this country I feel comfortable in acknowledging that possibility, and the implication that in years to come some (many?) young adults with the dx will be able to reject it not because they've been cured, but because the label was inappropriately applied in the first place.
L&P
BD
-
In other words, you have no real evidence for your assertion that 'genuinely disabled people' are losing out somehow because of all these casual/false diagnoses.
Meanwhile I'll keep an eye out for possible Panorama reporters lurking in the bushes.
No I don't, just logic and no personal psychological imperative to deny that logic. Most people would accept that the fact Asperger's used to be something SS saw as a disability and now isn't provided evidence of a negative impact on the wider Aspergers community as a direct result of widening definitions and a perceived 'status' shift as a direct result of those widening definitions....
Do you have any real evidence that 'genuinely disabled people' aren't being disenfranchised by casual/false diagnoses?
In wider terms, it's very much established that genuinely disabled people are losing out because of casual/false diagnoses of disability - you only have to look at statistics on disability benefit fraud, and the widely reported fact that cuts to eradicate fraud are also negatively impacting on those with genuine problems. Are you in some way suggesting that autism as a disability is somehow exempt? Got any proof of that?
L&P
BD
-
So if Asperger's does get removed from the DSM 5 - do those of us with that dx get re-diagnosed or re-labelled or are we magically "cured" or do all the problems just go away?
And interestingly do we then get kicked off the forum as imposters?
Having autism has never been a criteria for membership here!
Dunno what would happen to all the current aspies, but the plan, I think, is that there will be three 'grades' of autism, with 'mild' as the least, erm, troublesome. I suspect that most Aspies would fall into the 'mild' category (according to the new defintions) and so would most HFA's. Eventually the term 'mild' will become meaningless in real terms, despite the fact that the lovely new wide net they've created has actually caught lots of fish it shouldn't have, whose problems weren't mild in the 'High Functioning/Mild Aspergers' (no such things despite all the people now so labelled) sense of the word at all.
-
Hi Baddad
To some degree I share your concerns about how and by whom some individuals are 'diagnosed'. I think that there's a lot of ignorance about what ASDs are and how it affects individuals, etc and I feel that, for example, the way that NAS proactively backed and widely marketed Gary Mackinnon was wrong – I felt to the 'outside world' that it rather portrayed and generalised the disorder in the wrong way (much better to have educated people. Point is, I am concerned that people who have been diagnosed after thorough assessment by suitably qualified professionals may be stereotyped/tagged same as those whereby the diagnosis is questionable (e.g. in perhaps a minority of cases, have been diagnosis without thorough assessment). But (and it's a big 'but), there is always a starting point – i.e. some people go through life struggling and then suddenly wham/something registers, they read something (or a relative does) which describes them to a 'T' (remembering that in the cases of a lot of adults, the knowledge, expertise, etc simply wasn't out there X number of years ago). I did exactly that – I was at breaking point being written off as a stressed out first time mother that couldn't cope. Yet I knew with surety that something wasn't right. Not for a second suggesting that reading books, trolling the internet, etc suddenly made me an expert, but it gave me a starting point. This forum is a source of support and informaiton point for those who suspect thye or someone close to them may have an ASD. I would therefore hate to give those the impression that the absence of a diagnosis (NHS or private) invalidates their concerns, questions, etc etc), partciularly at a time when they're particularly desperate or vulnerable.
Thank you, CMuir, for a coherent response rather than an emotional one. (And that is not, BTW, because you've 'agreed with me to a point'). FWIW I agree with you to a point too and totally accept that there will be many genuinely autistic people who 'identify' themselves or find the 'starting point' for that through trawling (not trolling, Hopefully!
NB - I'm not having a pop at your spelling, BTW I think 'trolling' is a fishing term too, usually associated with ledgering or spinning - it's just more often used in internet terms to describe a very naughty type of forum behaviour) the net, reading books etc, and I think in that respect the more info that's out there the better...But just like just about everything else on the internet, or in books, or in (etc etc) the way that information is viewed, used and interpreted is totally open-ended and the psychology (for want of a better word) of the reader viewing using and interpreting that information is a complete unknown quantity. And my major concern arising from that is that autism has been trivialised to the point of being something that armchair experts feel qualified to diagnose themselves - for themselves and sometimes for others - and written off with bland and dangerous assumptions that 'we're all on the spectrum somewhere' (a phrase, I believe, that actually started as a quote from a leading professional FGS!).
Like you, I would hate to think that the absence of a diagnosis invalidates concerns, questions etc, but I would also hate to think that the assumption of a diagnosis or a casually applied diagnosis (NHS or Private) was enough to undermine the necessity for accurate definitions and full, holistic assessment.
L&P
BD
-
Baddad, I can't say I've ever heard of someone being diagnosed via a phone call. I think you dreamed that one up
No, there's at least one on the forum, and I have heard it elsewhere too. The peeps involved did actually go for brief consultations following the call (I think?), but more to pick up the 'paperwork' than to actually discuss things further, because the actual decision was pretty much finalised on the call and the anecdotal evidence advised during it. As I said, I'm not going to trawl through all the posts to prove a point, because it would be, erm, pointless, as these things always are... If anyone else can remember the post(s) though they mnight want to say so(?). Believe me, Tally, any dreams I actually remember by morning are usually far more exciting than dreams about peeps being diagnosed with autism over the phone!
-
Why not suggest it to the daily Mail?
Have to say I disagree with you on your views - nothing new there.
Ahhh... a 'daily mail reader' snipe. Who's gonna be the first to bring up Hitler or use the word 'Draconian?'
Disagree by all means, barefoot, but hopefully because you disagree with the conclusions not flatly deny the facts of massively increasing dx's, moved goalposts and/or the probable implications of those things.
One other thing I forgot to say in my last post: I don't think casual/over diagnosis etc is bad ONLY for the autistic community, I also think it has some pretty lousy implications for the people potentially misdiagnosed. For some it may be the perfect excuse or crutch they are looking for, because psychologically they need something to project all their fear, blame, anger, etc onto. It might indeed provide a 'crutch' - but it's anything but a healthy one, and while they're limping along on it their unlikely to find anything in the way of more positive 'support' or inspiration. Lots of them about, I think. Alternatively, if a case of misdiagnosis rather than simply a 'false positive' then all sorts of things could be overlooked, ranging from mental illness through to things like Munchausen or even abuse. I think increasingly that autism is becoming a bit of a 'catch'all' term in that sense, and once 'identified' creates a pretty impenetrable barrier to getting those things looked at properly, either in isolation or as co-morbids. Finally (not in any 'conclusive' sense - because there could be many many other dangers in misdiagnosis - but purely because I can't be bothered to list them), I think you have to look at that other ol' chestnut of how a diagnosis of autism is often responded to: lowered expectations, assumptions of victimhood, 'can't do' rather than 'can do' thinking.... oh, you know 'em all by now...
Now, rather than turning this into another thread that ends up with people lifting their skirts and running away screaming 'victim' hows about we try to get back to the positives?
I don't mind either way, really, but in all honesty it does get a bit tedious offering the same logic to people who, for whatever reason, don't want to acknowledge it. Thankfully, thid being a post I started and where I've only responded to questions people have asked me or posted for my attention NOBODY can possibly take any of this personally, so touch-wood this should only prove a minor diversion
L&P
BD
-
Hi baddad,
Like indiscreet I find this forum really helpful since I came across it. I have gone from feeling utterly alone and confused about my past difficulties to gaining a sense of shared experiences with other adult AS people.
Of course, the forum is host to a wide range of opinions and no one could possibly agree with everything posted. However, the point you make about 'casual methods of diagnosis' causing 'genuinely disabled people' to be overlooked is not a matter of opinion. Either what you claim is true or it isn't. So if you have evidence to support your assertions please share it here.
Otherwise try to understand that what you write about adult Asperger's is tantamount to a rejection of some of us who see the forum as something of a refuge.
Sorry, little plum - I don't have to answer to you or anyone else for my opinions (which of course, my opinions ARE), no more than you have to answer to me!
if you want to see some of the evidence of casual diagnosis I have seen just look through the boards... there's plenty of it - wives diagnosing husbands, boyfriends diagnosing girlfriends etc, and if you look more deeply posts where people have openly said they've been diagnosed via phonecalls, thirty minute one off consuiltations etc etc. If you can't be bothered, that's fine, but don't ask me to do it for you! Now taking that one stage further, while there is yet no research to prove the implications of casual diagnosis (and that's unlikely to happen when the people doing it are effectively allowed to 'self monitor') there are many precedents, as I've already stated and offered examples of. I would add to those examples above the quite recent decisions by most LA SS departments to remove 'Aspergers' from their case files as it is no longer seen as a disability, again, widely discussed on these forums and elsewhere!If individuals feel challenged by the assertions I make or 'rejected', perhaps they need to ask themselves why they feel so sensitive about their diagnosis, not me? I don't know them - I couldn't possibly tell them anything about their autism or the manner in which they diagnosed it for themselves or obtained a diagnosis elsewhere!
TBH I'd dearly love to see this situation exposed - to see a programme like Panorama investigating private dx with undercover filming etc., and looking into the factors contributing to what has been described time and time again, even by professionals, as an 'autism epidemic'. I'm sure they will at some point - in fact it amazes me it hasn't happened already - but that said, if they exposed a specific doctor for specific bad practice with a (or even some) specific clients, how many of that doctors previous clients do you think would then see it as a reason for questioning the validity of their own diagnosis? While I'm waiting for Panorama or whoever, I'll just have to do the other thing and accept that the anecdotal evidence of people openly posting on this and other forums etc detailing situations that can only be described as casual diagnosis at face value... I mean, what reason would they have to lie about it?
L&P
BD
-
What doesn't help is to read posts alleging that many adults being diagnosed are not truly on the spectrum; they have been placed in that category due to (according to the poster) the wrongful widening of the parameters relating to autism and/or faulty or careless diagnosis. Also, suggestions that if they are asked by their employers whether there is anything the employer can be put in place to make certain aspects of the job less stressful they should refuse since (a) they've managed to cope to date and (
it may make it harder for young people somewhere on the spectrum to get work. However carefully posts like this are written the effect, to me, is like a slap in the face to the poster being addressed.Hi indiscreet. While fully acknowledging that no matter how carefully written posts like these feel, to you, like a slap in the face, that doesn't in any way diminish my concern that the widening defintions of autism (fact) and the increasing incidence of casual diagnosis (fact - given that I hear and read more and more regularly of people being diagnosed by phone, by one-off ten or fifteen minute interviews, by their wives/husbands/partners, by unqualified nursery or school staff, by facebook apps, by themselves etc etc etc)is already - and over time will undoubtedly increasingly - have an effect on the way autistic people are perceived and responded to across the board. Those are not unrealistic or fictional concerns - we have seen exactly the same dynamics at work in recent years in terms of things like ADHD and Dyslexia, and even with regard to something like wheat intolerance, which has seen the very real medical problems of coeliacs etc reduced to the level of joke material about women farting (some good jokes, though!).
There will also be people like me who were diagnosed as adults and naturally our concerns will be different but there are surely sufficient categories and threads for us all to post freely without treading on each others toes.I agree - so why do you feel it necessary to continually 'tread on the toes' of those expressing what is undoubtedly a minority (but perfectly valid and reasonable) opinion rather than promoting the ideal you have just proposed that people should be allowed to 'speak freely'? Why, in fact, have you just chosen to bring the very topic that you feel is a 'slap in the face' into a thread that (I think - I'm not going to look therough every post to check) hadn't even mentioned prior to this point?
Seems to me, that what you mean with the statement above about 'not treading on others toes' is that you would prefer certain opinions, however carefully worded, to be silenced, and that's not really got anyhting to do with free speech at all, has it?
I am sorry you, and others, may feel 'challenged' by what I say, but that's not really my problem. As long as what IMO are fairly casual methods of diagnosis are on the increase I am going to remain 'challenged' by the knock-on effect that has for the wider autistic community, and the more the criteria is widened to include non-disabled people the more i am going to be 'challenged' by the knock on implication that genuinely disabled people are more likely to be overlooked in terms of benefits, services and support...
L&P
BD
Thoughts please?
in General Discussion
Posted · Report reply
The autism 'get out of jail free' card obviously didn't work in this case - which can only be a good thing - but the fact that it's becoming far more common for it to be played at all in cases like these can only be a bad thing.
The NAS should be jumping all over this kind of stuff, but having said that how many parents, hand on heart, if their children were in trouble for something would tell a defence team NOT to use it? And there's the rub...
The simple question is this: Did he know his messages would offend or upset people? Yes. Is he capable of knowing that if you upset or offend people there may be consequence? Yes. Taking those factors into consideration 'Aspergers' (and it would be nice to know if this was an 'expert witness' dx or a pre-existing dx) is an irrelevancy, and shouldn't have been brought up in the first place. Sadly, for many reading that article it'll be a case of 'Here, Aspergers? isn't that what that horrible kid up the road's got? Yes, thought so... best keep your distance from him then, the nasty little **********.'
L&P
BD