Trying to promote more positive perspectives on autism...

[darkshine]

.............thankfully we should be alright I hope as my son was dx with the term, ASD/aspergers.....however if they remove it I guess that means hes cured...which will please him no end!!

I was being ironic

 

It's funny though isn't it? How labels can make a difference - in one way the label doesn't really make so much difference to me - in the view of my own opinions of certain things - but it makes a big difference in other's opinions and how they react/make me feel, then there's the side of it where having some label allows learning and improvement, support even... and then another side where it really bothers me having a label.

 

Then there's people who are using this label? And I still can't comprehend why anyone would want this/want to use it as an excuse/get something out of it (something that isn't to do with management or help/advice or learning, coping or whatever) I don't get that...

[Lyndalou]

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!

 

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.

 

As I was so upset that it appeared that my confidence had been breached, I initially had no intention of getting back to the person I had approached (by having the afore-mentioned preliminary conversation with them) to get a private OPINION, NOT a diagnosis. I had a very long, brutally honest conversation about how violated I felt and how my trust in him because of it was almost zero. This person agreed that if this scenario had been true (which he adamantly stated was not) then it would be entirely appropriate for me not to go ahead with the assessment. I felt reassured he was telling the truth so I went ahead with an assessment for an OPINION which was based solely on self-report, one conversation with my mother and filling out 2 questionnaires - the ASQ which I found to be a very difficult questionnaire to fill in where I scored below the suggested cut off at 29 (although still well above NT scores) and the Ritvo scale where I scored 127, well above the suggested 77, when it is at the discretion of the diagostician whether or not the person displays the level of impairment necessary to be classed as disordered. Due to the fact that my ASQ score was below the suggested cut off (although Baron-Cohen suggests that in certain circumstances, a diagnosis is appropriate even if the score is 26) and my overall presentation, the OPINION was that I am not disordered although at certain times life circumstances cause me to BECOME disordered.

 

After this decision was arrived at, I spoke to this person again about the fact that I had deliberately left out some information in my self report because I had given permission for him to approach the psychotherapist I worked with last year and felt sure that by doing this he would 'fill in the gaps' with regards to my mental state and social difficulties. My therapy sessions were videoed so there would have been no doubt as to what I was saying and how I said it and this therapy had been undertaken when AS did not even come into the equation. Unfortunately, I failed to take into account that my assessor would not go about the assessment process like I would have done and he did not feel it necessary to contact the therapist.

 

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 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

[baddad]

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

[Suze]

We appear to be going a little off topic now............

 

................Darkshine ....I know you were being ironic...I was also being ironic

can we get back to the discussion

[darkshine]

................Darkshine ....I know you were being ironic...I was also being ironic

I thought so - just wanted to be sure though as it's hard to tell sometimes

 

I don't know about anyone else - but I'm not really feeling much positivity in this thread

 

Anyway - this - was on topic - I said about labels and stuff and that's related to perspectives on autism....

It's funny though isn't it? How labels can make a difference - in one way the label doesn't really make so much difference to me - in the view of my own opinions of certain things - but it makes a big difference in other's opinions and how they react/make me feel, then there's the side of it where having some label allows learning and improvement, support even... and then another side where it really bothers me having a label.

 

Then there's people who are using this label? And I still can't comprehend why anyone would want this/want to use it as an excuse/get something out of it (something that isn't to do with management or help/advice or learning, coping or whatever) I don't get that...

I don't think labels are a positive in some instances - I think they can be very negative - or have very negative connotations.....

[baddad]

 

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

[baddad]

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

[darkshine]

Hi Baddad - gutted that your first post disappeared and you had to rewrite - very frustrating (I had that happen too the other day)... I'm happy I never saw the first failed attempt though cuz there's like a 10 hour gap til you could be bothered to re-do so I'm pleased I never knew til now And now it's later still... and I'm tired enough that I can't cope with quotes and edits (for the exact reason that there's more chance I'll press something and lose my post too )

 

While I was offline this afternoon, I was trawling though some old writings of mine (for those appointments I have coming up) and amongst it all I came across something I wrote a long time ago - it's funny weird - cuz it was about labels - it basically said: If I wasn't viewed in the judgement of societies "normal" then I wouldn't be "abnormal" - if that spotlight of prejudice didn't exist, those social expectations weren't so rigid, then I wouldn't be seen as a weirdo - for the things that make me "weird" only do so in other's eyes. My opinion of myself, came as a reflection from the world (whether warped or real - that is the perception and feedback I receive).

Tonight I went out - I got invited to go for dinner and then for one game of bowling after. I was dreading it - but I swore I would go regardless. The restaurant was packed and noisy and my idea of a nightmare - but the people I went with didn't mind that I couldn't talk much cuz the noise stole my thoughts/coherence, and they didn't mind that the only food I could face was 2 starters and a shared dessert.

 

At the bowling - they didn't mind that I stared more at the mirrored disco ball than the rest of the game and how the white went purpley blue in the UV lights - or that I never - not once looked back to see where my ball went after I bowled it - relying instead of the expressions and reactions of the others to tell me whether or not I have to pick up the ball for a second shot or not.

 

Those things made it better - cuz part of the dread is being picked out negatively for being different (whatever you call that difference) and the lack of that judgement it is what made that initial dread go away, because when I am not being judged for a label or for how I am it is a lot nicer.

Here's the thing though - one of those 3 people I went out with - they have a family member dx'd with autism/AS - and that person's girlfriend was talking about her other half's family member like they were a retard. I try to not let it bother me, I don't challenge her, I don't admit my dx, I don't say much cuz there is nothing I can say - but her views are wrong, and judgemental.

 

So it is quite funny to have a night where I feel totally un-judged - but at the same time keep my dx secret for the very reason that I will be judged - and its even weirder that the labels "MH problems and depression" seem to be accepted quite easily but autism is seen as being much worse - and what bothers me more is this sense I get with some people that they think autism has similar prejudices to the ones schizophrenia has (like they are dangerous or harmful - not to be trusted - or lazy - inappropriate - the list goes on - but very very negative for sure).

That's where you get back onto labels and think - it actually does make a massive difference to the way people think, the way they see people, the way they judge them and how their expectations change as a result of a label - and how as a result it can change the person with the label's views too... But I'd rather be viewed as quirky or different (without negative connotations) than be viewed as some of the things you described - I don't want to be written off as incapable - things just take me longer sometimes is all - having said that - there are some things I can figure out really quickly that others find impossible.

 

When I'm viewed as quirky or whatever, it doesn't feel so bad. When I'm viewed as mentally disabled, useless, wrongly weird, incapable, dis-functional - it makes me feel those things too...

 

Edit - sorry - this is much monger than I intended but relevant so I guess you'll forgive me... I did separate it into nice coloured blocks of text though

Edited September 10, 2011 by darkshine

[darkshine]

I have to come the conclusion that it is just as impossible to promote a positive perspective on autism as it it to promote a positive perspective on humanity - there's just too many negatives!!!