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Source: (consider it) Thread: AS: The Outsiders: Asperger's, social anxiety, and related issues
Emma Louise

Storm in a teapot
# 3571

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I'm not 100% faceblind, as in I will recognise my husband... but I have very very poor face recognition skills. I've just done a couple of tests and realised I am quite different to others in this respect.
faceblind tests

I tend to have done ok at church if people always wear pink, or have a big beard, but didnt realise other people were recognising something I wasnt.... I just thought I had a "bad memory".

very very bizarre.

Posts: 12719 | From: Enid Blyton territory. | Registered: Nov 2002  |  IP: Logged
Josephine

Orthodox Belle
# 3899

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(Responding to question on the previous page about whether you have to disclose a disability on a job application.)

In the US, it is entirely up to the individual whether to disclose information about a disability to an employer or potential employer. If you don't tell them, they're not allowed to ask. On the other hand, if you don't tell them, they're not required to make reasonable accommodations for you, either.

There are advantages and disadvantages to disclosing, and there are advantages and disadvantages to not disclosing. It depends in part on the severity of the disability, whether the disabled person might need accommodations, and, well, lots of other things.

OTOH, if you have a formal diagnosis, you probably would have to disclose it on an application for life insurance or health insurance.

[ 13. January 2008, 19:07: Message edited by: Josephine ]

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003  |  IP: Logged
Loveheart

Blue-scarved menace
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Thanks Josephine.

Does anyone know about the UK?

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

Posts: 3638 | From: UK | Registered: Jan 2007  |  IP: Logged
Loveheart

Blue-scarved menace
# 12249

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Google is my friend, this document makes interesting reading ...

AS and job applications

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

Posts: 3638 | From: UK | Registered: Jan 2007  |  IP: Logged
The Scrumpmeister
Ship’s Taverner
# 5638

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quote:
Originally posted by amber32002:
I don't always know when people are bored, so I had to rely on what other people have told me (which would be "oh yes!")

Precisely!

I actually don't think I have much of a problem with face recognition or interpreting expressions. However, I don't instinctively look at people's eyes during conversation. I have to make a conscious effort to do that and, through my teenage years, would look at people's mouths while speaking with them, or just generally.

Because of this oral observation over the years, (and I hope I don't make anybody self-conscious if ever they have to meet me), I have always noticed many of the things that happen with people's mouths when they speak/eat, to the point where I find things such as a bit of dribble, occasional sprays of saliva, and clear cases of people needing to swallow saliva before continuing speaking, all perfectly normal and socially acceptable, while I now know that others are often disgusted by these things. If I'm speaking with someone and spray the person accidentally, I often get half way through the next sentence before I notice the subdued disgust on the person's face and wonder whether I should apologise.

Another result of not instinctively looking into people's eyes, (I always had to be told to as a child), is that I become very self-conscious when I am put on the spot and asked by friends to give them an honest answer about something. As has been pointed out earlier in the thread, for those who don't look into people's eyes is that this isn't necessarily an indication of dishonesty, which connection has never made sense to me. I then end up forcing myself to look into the person's eyes and wonder whether I am coming across as trying too hard to look "honest".

That's another thing I'm for ever doing: saying and doing things confidently and then second-guessing myself, wondering how it was perceived by others or whether it makes me appear too eager/aloof/insensitive. I then debate with myself whether to ask the person because I want to know how I came across but don't want to appear to be obsessive. I often share personal and sometimes intimate things with acquaintances not long after meeting them, just because I feel comfortable doing so and would have no problem when people do the same with me. Occasionally, people will make it known that I have made them uncomfortable as they hardly know me. Then, when people don't do the same with me, I wonder whether they don't like me/trust me/consider me a friend, (especially if the person who hasn't shared is somebody I consider to be a friend).

I've always considered myself as being emotionally aware, good at taking hints, and aware of people's body language and facial expressions. Yet, looking back, I wonder just how much of this is true. A few weeks back, I was visiting a parish where I often sing when there isn't a liturgy at my own church. I was speaking to one of the other choristers after the Liturgy and the exchange went exactly like this:

Me: It's really good to see you again.
Him: I wish I could say the same.
Me: (jokingly) Yes, I suppose I am looking uglier today than usual.
Him: No. It's just that I really don't like you.

Looking back, I realise that he had actually subtly expressed this in the past but I had simply read those occasions as him having a dry sense of humour. As if my blindness to his meaning wasn't apparent enough, I was still unsure and in my mind went through all of the different meanings of what he had said, finally sending him a message the next day asking whether he was joking or being serious. I got no reply, so got the message, and was a little embarrassed, but there we are. This, along with other things, has made me wonder just how accurate my self-understanding of my awareness of other people's behaviour actually is/was.

I do have a tendency to over-analyse these things and to look at the various outcomes before anything has actually been set in motion, which is another thing mentioned above.

May I ask those of you who have identified yourselves here as having some form of AS whether you have been self-diagnosed or actually been tested? Thank you.

[ 13. January 2008, 19:18: Message edited by: Saint Bertelin ]

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If Christ is not fully human, humankind is not fully saved. - St John of Saint-Denis

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welsh dragon

Shipmate
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St. B, your chorister acquaintance sounds as though he is the one lacking social skills in that exchange, to me!
Posts: 5352 | From: ebay | Registered: Aug 2002  |  IP: Logged
The Scrumpmeister
Ship’s Taverner
# 5638

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quote:
Originally posted by welsh dragon:
St. B, your chorister acquaintance sounds as though he is the one lacking social skills in that exchange, to me!

That's my fault for not giving a fuller explanation of what happened. To be fair to him, as I look back at the times he had hinted in the past and I had just thought he was joking and continued speaking to him as though we were bosom buddies, I can easily see how he may have become frustrated and just couldn't bear to feign politeness anymore.

There's little worse than realising after a long time that somebody you had considered a friend actually only tolerated your presence for the sake of politeness. Having recently had that happen to me, I actually appreciate the honesty of the chap at this church, even if it was a little upsetting - more because it came as a surprise. I'd only known him a couple of months and seen him a few times so no tears. [Smile]

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If Christ is not fully human, humankind is not fully saved. - St John of Saint-Denis

Posts: 14741 | From: Greater Manchester, UK | Registered: Mar 2004  |  IP: Logged
Chorister

Completely Frocked
# 473

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Regarding eye contact, though, it often is easier to talk to someone without it - eg. sitting sideways on, or talking to someone in the back seat of the car when you are in the front seat.
I'm not sure why this is, but it just is. Eye contact is confusing because what the eyes say doesn't always match what the words say.

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Retired, sitting back and watching others for a change.

Posts: 34626 | From: Cream Tealand | Registered: Jun 2001  |  IP: Logged
Melon

Ship's desserter
# 4038

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But there's a huge cultural component to eye contact. Many many cultures find the amount of eye contact expected in the West to be very odd, and it's not uncommon for eye contact never to happen between people of widely differing status. Does that mean that the cultural norms of the rest of the world were set by aspies, or just that Western culture is screwed?

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French Whine

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jlg

What is this place?
Why am I here?
# 98

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Lack of eye-contact is one of the things which generally really helps when communicating with teens.

But it is rather expected in a lot of western social situations. It is also used as a power-thing, IMHO, by people who are good at 'handling' other people. I say that as someone who doesn't mind ordinary eye-contact, but has been the unwelcome recipient of power-mongering/manipulating eye-contact.

I will also point out that there is a the situation where the giver feels they are simply making the other person feel appreciated, but which is received by the recipient as manipulative. (Ok, I'm having serious problems with my church choir director at the moment, but I've also experienced it elsewhere in very-small-town political situations.)

There is normal friendly eye-contact. There is nasty eye-contact. There is aggressive eye-contact. There is evasive-because-I-am-better-than-you eye contact. There is evasive-because-you-scare-me eye contact.

I've only listed the ones I have actually experienced, but "eye-contact", even among those of us who are probably NT, is not a simple social communication.

Posts: 17391 | From: Just a Town, New Hampshire, USA | Registered: May 2001  |  IP: Logged
Leetle Masha

Cantankerous Anchoress
# 8209

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Jennifer, that's an excellent list. It certainly gives a panorama of the various forms of eye-contact in a generally common social setting.

I think a lot of the "eye-contact" and "body-language" instances are analysed very subjectively by the participants. For example, one time when I was in a group of people, one person told a funny joke. I laughed and smiled at them and gave what I thought was an appreciative look in their direction, but they later said to me, "Why were you leering at me?" [Confused]

Part of the difficulty is that I couldn't see myself, as in a mirror, at the time. What I thought I was doing was not what they perceived me as doing.

On the further side of it, when someone gets angry and gets "in your face", people say that the two persons are "eyeball to eyeball", they'll confront each other until they reach the point where somebody blinks, or an infuriated and combative person may enjoin the other, "Look me in the eye and say that again, I dare you!"

I think those are all situations that can crop up for just about anybody, NT or not.

Mary

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eleison me, tin amartolin: have mercy on me, the sinner

Posts: 6351 | From: Hesychia, in Hyperdulia | Registered: Aug 2004  |  IP: Logged
Living in Gin

Liturgical Pyromaniac
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quote:
Originally posted by amber32002:
On the subject of the private board, I do wonder if Living in Gin had in mind a board where tricky relationship issues/health issues or similar things could be discussed 'in private', in which case that sort of board might be better as a separate one from a general one about younger people with a disability? It's worth looking at sites like 'Wrong Planet' (any search engine should find it) and seeing what sort of posts are posted on there for an idea of the subjects likely to be raised, if this was to be about social skills and autistic spectrum matters/related disabilities?

You pretty much hit the nail on the head. In fact, I've registered at WrongPlanet.net and have already posted on their forums, but there are so many forums there with so much activity, it's a bit hard to keep up with it all. They're a great resource, but I was thinking a private board on the Ship would be a bit more intimate and friendly, especially since we all share in the life of the Ship on the other boards here as well.

I could imagine a fairly significant amount of overlap between the membership of this new board, Josephine's Not-Holland board, and/or Esmeralda's Waving Not Drowning board, but it would still be nice to have our own space -- and I suspect people on the other boards might feel likewise. (Imagine a group of parents in a coffee shop, discussing their children's' special needs, when a bunch of Aspies shuffle in and start staring at the floor. [Smile] )

I've given some thought to how a new board might work, and here's what I had in mind:
  • Membership is open to all Aspies (officially diagnosed or not), people with social anxiety issues, "male engineer" types, or anybody else who struggles with similar issues. Parents, friends, or family of same would also be welcome.
  • Ship's Ten Commandments would apply. Typical threads would be along the lines of what you'd find in Heaven, Purgatory, and All Saints. Hell-like rants would also be permitted, as long as they're not directed at any particular Shipmate or board member.
  • Ship's policy against suicidal ideations and medical advice would also apply. I would expand this to include a prohibition against second-guessing anybody else's diagnosis, whether it's an official diagnosis or a self-diagnosis. (In other words, if somebody identities as having Asperger's, ADHD, or whatever, they should be given the benefit of doubt by other members.)

As for the setup, I'd be happy to get things started up and do the hosting (I'd probably ask for one additional host as well), and I'm willing to pay for half the cost of the board if others can make up the difference.

None of the above is written in stone, so I'm open to suggestions. And of course, we'd need a name.

What say you?

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It's all fun and games until somebody gets burned at the stake.

Posts: 1893 | From: Cincinnati, USA | Registered: Apr 2002  |  IP: Logged
Melon

Ship's desserter
# 4038

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quote:
Originally posted by jlg:
"eye-contact" [...] is not a simple social communication.

What is this "simple social communication" of which you speak? Human communication is extremely complex, and both eye contact and gaze are almost certainly hardwired to be part of that communication process. But how they communicate is, to a very large extent, socially defined. Getting gaze wrong has a visceral effect on us because it's a hardwired communication channel, but what is wrong varies from culture to culture. If you are a prisoner in a Japanese prison, eye contact with the staff is always wrong.

Similarly, having your personal space invaded can be remarkably unpleasant, but the size of personal space varies enormously from culture to culture.

If those other cultures had our self-diagnosis mentality, there'd be self-help groups for those who feel a visceral need to hug casual acquaintances and look everyone in the eye, and those who stigmatised such people might marvel that their cousins in America had attained membership of a club called AS, simply by doing what all right-thinking people consider to be normal.

My passing visits to countries with a Chinese population have been enough to convince me that 1 billion people think all Caucasians look alike. The cues people use to identify faces are not hardwired, and recognising people on the basis of their glasses is a perfectly valid way to proceed, as long as some but not all people wear glasses in your environment. Lots of people failed to recognise me when I shaved off my beard, but I don't think they all had AS, they had simply latched onto one of the more obvious features of my face. It's the stuff of paperback cliché - the bad guy wears a bright pink suit and an outrageous moustache so that, when he takes off the suit and the moustache, none of the witnesses can remember anythng about him.

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French Whine

Posts: 4177 | From: Cavaillon, France | Registered: Feb 2003  |  IP: Logged
Loveheart

Blue-scarved menace
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Melon, my son has AS, he was diagnosed in September. The Dr went through her diagnosis with me in detail. Each case varies from individual to individual. It wasn't just a case of "he doesn't make eye contact", it was 6 or more factors that determined his diagnosis. Added to that, his diagnosis of AS, as opposed to ASD was due to his co-ordination - for example, he still struggles at 6 to eat with a knife and fork, and he cannot ride a bike because he cannot co-ordinate pedalling.

I know you're not referring to my son, who has been diagnosed, but for those of us who are exploring the possibility of diagnosis (whether by Dr or self), it is a difficult time.

(edit to correct a typo, because otherwise it didn't make sense!)

[ 14. January 2008, 08:15: Message edited by: Love the You you hide ]

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

Posts: 3638 | From: UK | Registered: Jan 2007  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Love the You you hide:
Thanks Josephine.

Does anyone know about the UK?

No, you don't have to disclose. The info from Berkshire Autistic Society you posted (and what a splendid charity they are, by the way...) certainly does explain a fair amount of this.

Prejudice and/or ignorance is 'alive and well' in UK society, and whilst employers have laws that say they must be fair, they can so easily claim that they didn't give someone the job because another candidate was better qualified. It's often the case that they find ways to discriminate against anyone they think will be hard work. Charities and public organisations (health, councils etc) are better - they have proper training on diversity and are big enough to put support in place for people. Would I disclose to a smaller private employer? Nope. Not unless it's my only way to get a job. That's just my view, though.

Posts: 5102 | From: Central South of England | Registered: Mar 2006  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Living in Gin:
[QUOTE]

...I've given some thought to how a new board might work, and here's what I had in mind:
  • Membership is open to all Aspies (officially diagnosed or not), people with social anxiety issues, "male engineer" types, or anybody else who struggles with similar issues. Parents, friends, or family of same would also be welcome.
  • Ship's Ten Commandments would apply. Typical threads would be along the lines of what you'd find in Heaven, Purgatory, and All Saints. Hell-like rants would also be permitted, as long as they're not directed at any particular Shipmate or board member.
  • Ship's policy against suicidal ideations and medical advice would also apply. I would expand this to include a prohibition against second-guessing anybody else's diagnosis, whether it's an official diagnosis or a self-diagnosis. (In other words, if somebody identities as having Asperger's, ADHD, or whatever, they should be given the benefit of doubt by other members.)

As for the setup, I'd be happy to get things started up and do the hosting (I'd probably ask for one additional host as well), and I'm willing to pay for half the cost of the board if others can make up the difference.

None of the above is written in stone, so I'm open to suggestions. And of course, we'd need a name.

What say you?

I can help with cost, and yes, that sounds about right to me. But I definitely wouldn't want to have any admin rights - I don't have the skills to manage such a thing.
Posts: 5102 | From: Central South of England | Registered: Mar 2006  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Melon:

...If those other cultures had our self-diagnosis mentality, there'd be self-help groups for those who feel a visceral need to hug casual acquaintances and look everyone in the eye, and those who stigmatised such people might marvel that their cousins in America had attained membership of a club called AS, simply by doing what all right-thinking people consider to be normal.

... Lots of people failed to recognise me when I shaved off my beard, but I don't think they all had AS,

As LoveTheYou has already said, there is far more to AS than any aspect of not-looking-at-people or failing to recognise someone, and you are quite right that cultural differences can account for some things. Culture also makes it easier for some aspies to live in particular countries, and very hard to live in others. (Easy e.g. Germany which tends to be far more rule-driven, difficult e.g. Italy where body language and fashion is, by comparison, very important).

A diagnosis of Asperger Syndrome needs a heck of a lot of 'boxes' ticked. There would have to be inappopriate communication skills, odd body language, obsessive hobbies, inability to empathise properly with others, the problems would have to be present over the whole life, etc. Yet people who have severe problems with one or two of these things would have as much right to support and help to overcome their difficulties, and these may indeed relate to something that is in itself a disability. Only an expert can truly know.

Posts: 5102 | From: Central South of England | Registered: Mar 2006  |  IP: Logged
Karl: Liberal Backslider
Shipmate
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According to your last paragraph, Amber, I had AS when I was a child but don't now. Is that possible, or useful?

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Might as well ask the bloody cat.

Posts: 17938 | From: Chesterfield | Registered: May 2001  |  IP: Logged
Quercus
Shipmate
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In contrast to several of the comments, I do have a diagnosis of AS/HFAD which I don't accept.

I was diagnosed during a course of marriage counselling. In very rough outline, my ex-wife-to-be felt she wasn't receiving emotional support, or feedback. One of the counsellors we counsulted, who is recognised in this area, made the diagnosis. Voila, problem identified.

The thing is, I do exhibit some arguably AS traits - I'm not good at large social gatherings and have to spend time alone to recharge afterwards, I like being solitary, I am a bit of a science-nerd by training and choice, I even like cats, dammit. But being told that I don't have empathy, a theory of mind, or an understanding of body language threw me, because in my mind I do (and close friends who I asked confirmed this). I also don't suffer from over-literalism.

I believe I am just hopelessly introverted and not ept in some social situations (which is why at Greenbelt I spoke to all of 3 Shipmates when I first arrived , and then avoided all Shippie contact from then on...sorry... [Hot and Hormonal] )

Generally - I think AS can be a useful diagnosis, but equally at the borders it can be too easy a label to apply.

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"I meant," said Iplsore bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

Posts: 321 | From: Up on a hill | Registered: Jun 2007  |  IP: Logged
Karl: Liberal Backslider
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# 76

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The mistaken logic, Quercus, is the following:

You have symptoms X, Y and Z, which are sufficient for a diagnosis of condition A

Condition A is also associated with symptoms U, V and W.

Therefore, you also must have symptoms U, V and W.

Too many health professionals work this way. It doesn't work in developmental disorders, and it doesn't work in mental health either.

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Might as well ask the bloody cat.

Posts: 17938 | From: Chesterfield | Registered: May 2001  |  IP: Logged
Quercus
Shipmate
# 12761

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quote:
Originally posted by Karl: Liberal Backslider:
The mistaken logic, Quercus, is the following:

You have symptoms X, Y and Z, which are sufficient for a diagnosis of condition A

Condition A is also associated with symptoms U, V and W.

Therefore, you also must have symptoms U, V and W.

Too many health professionals work this way. It doesn't work in developmental disorders, and it doesn't work in mental health either.

Thank you. Yes. If I came across that sort of logic in my professional life, I would be arguing against it as invalid ex post facto reasoning.

The first logical step - you have symptoms X, Y, and Z, which are indicative of condition A - may be valid. It may even me correct for me.

But the second step - and therefore you must express symptons U, V and W - casts doubt on the accuracy of the whole process, especially when that is used to reinforce the answer to the first step. This sort of logic is especially misleading where the diagnosis relies on quite subjective assessments.

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"I meant," said Iplsore bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

Posts: 321 | From: Up on a hill | Registered: Jun 2007  |  IP: Logged
Quercus
Shipmate
# 12761

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Afterthought: one of the points that frustrated me was being diagnosed on some of the more minor indicators of AS, and then it being assumed that the major indicators applied. Because of that, the proposed coping strategies were irritating at best and deeply patronising at worst.

No wonder things didn't work out.

[Afterthought 2: this is the first time I've thought about the whole experience in the this way. Good Lord, auto-therapy on an Internet board. Sorry]

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"I meant," said Iplsore bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

Posts: 321 | From: Up on a hill | Registered: Jun 2007  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Karl: Liberal Backslider:
According to your last paragraph, Amber, I had AS when I was a child but don't now. Is that possible, or useful?

Let me see if I can explain...

As a child, I had no idea how to socialise with people, so I didn't.
As an adult, I have learned to socialise with people, but I'm not good at it, and it's at great cost because I still have to do this through painstaking and exhausting effort rather than as a natural skill.

Learned skills that overcome the problems don't mean the problem went away - it just means that we find all sorts of ways to disguise it/overcome it by ourselves or with the help of others?

Er, did that help?

[ 14. January 2008, 10:48: Message edited by: amber32002 ]

Posts: 5102 | From: Central South of England | Registered: Mar 2006  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Quercus:
Afterthought: one of the points that frustrated me was being diagnosed on some of the more minor indicators of AS, and then it being assumed that the major indicators applied. Because of that, the proposed coping strategies were irritating at best and deeply patronising at worst.

No wonder things didn't work out.

[Afterthought 2: this is the first time I've thought about the whole experience in the this way. Good Lord, auto-therapy on an Internet board. Sorry]

Sounds like you could do with a second opinion?
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Quercus
Shipmate
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quote:
Originally posted by amber32002:
Sounds like you could do with a second opinion?

I have been thinking about it.

--

In one of life's little ironies, a couple of (female) friends and colleagues have just informed me that as I'm now single(-ish), they're going to arrange an evening out after work [subtext: at a venue suitable for meeting women]. The thought behind it is rather sweet but the prospect fills me with dread. Hey ho. It could be fun [Help]

[ 14. January 2008, 13:05: Message edited by: Quercus ]

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"I meant," said Iplsore bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

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Josephine

Orthodox Belle
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quote:
Originally posted by Karl: Liberal Backslider:
According to your last paragraph, Amber, I had AS when I was a child but don't now. Is that possible, or useful?

As I understand it, Tony Attwood has an informal category called "resolved" or something like that. (Thinking hard back to the seminar where I heard him talk.) Some people who are clearly Aspies in childhood learn enough social skills and the like that, at some point in adulthood (usually mid-30s or later, IIRC), they are clinically indistinguishable from NTs. They're really not NT, but they've learned how to get along.

The last time we talked about a re-evaluation for Middle Son at his high school, the school psychologist recommended against it. He said that the medical diagnosis requires a significant impairment of functioning, and, in Middle Son's case, because of a great deal of hard work by many people (including Middle Son himself) over a fair number of years, there really isn't a clinically significant impairment of functioning. He now falls comfortably into the category that most people would consider "eccentric."

So, does he no longer have AS? He would say he still does, and I would agree with him. The thing is that he's learned to function in most of the situations he's likely to find himself in. He can manage most ordinary figures of speech (he has a tremendous vocabulary, and treats tropes as vocabulary to memorize). He is aware that other people have their own ideas and motivations, and if people are behaving in the usual ways for the usual reasons, he can figure it out.

But toss him into an unusual, unfamiliar situation with people who are behaving in unexpected ways or for unexpected reasons, and he's as lost as he ever was.

Does any of that help?

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amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Quercus:
[QUOTE]
In one of life's little ironies, a couple of (female) friends and colleagues have just informed me that as I'm now single(-ish), they're going to arrange an evening out after work [subtext: at a venue suitable for meeting women]. The thought behind it is rather sweet but the prospect fills me with dread. Hey ho. It could be fun [Help]

Ah yes...unknown and unstructured social events are for me 'Fun' in the same sort of way as going to the hospital for a meeting with the doctors and nurses for some investigations, I find... [Help]
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amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Josephine:


But toss him into an unusual, unfamiliar situation with people who are behaving in unexpected ways or for unexpected reasons, and he's as lost as he ever was.


Josephine, thank you, as ever. You're able to explain things much more effectively than I can, I think.

That's exactly it. On the surface, we seem to be able to cope, and it's a dangerous situation to be in. A bit like 'skating on thin ice'. We can be skating away, smiling and waving and seeming to have control...but one single unexpected change and we're plunged into icy black waters, unable to breathe...and our wave for help is then so often misinterpreted as attention-seeking or lying or exaggeration, or even a continuation of the cheery waving we were doing a few minutes earlier.

It's also a little like trying to enjoy a nice picnic in the middle of an area of landmines. I don't know where they are, or when I'll step on one, but other people round me know exactly where they are and how to avoid them and think I'm just being completely silly.

At the moment, I'm facing a situation in the church where some of the leaders want me to explain to the rest of their leadership structure about autistic spectrum disabilities. They have no idea how daunting that is, or how likely I am to get it wrong if I have to try it by myself. I have to find a way to explain to them that there's things I manage really well, but others I simply cannot manage, and even I don't always know what they are until someone says "Well, you made a right mess-up of that, didn't you" or "That was just SO rude". (oops!)

So very difficult. [Hot and Hormonal]

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Loveheart

Blue-scarved menace
# 12249

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quote:
Originally posted by amber32002:
At the moment, I'm facing a situation in the church where some of the leaders want me to explain to the rest of their leadership structure about autistic spectrum disabilities. They have no idea how daunting that is, or how likely I am to get it wrong if I have to try it by myself. I have to find a way to explain to them that there's things I manage really well, but others I simply cannot manage, and even I don't always know what they are until someone says "Well, you made a right mess-up of that, didn't you" or "That was just SO rude". (oops!)

So very difficult. [Hot and Hormonal]

Do you know, I was asked to do the exact same thing! I just couldn't do it. I bought them the book "Let me tell you about Asperger's" instead. I still feel a bit of a coward for doing that, because they want to be able to support my son, and the best way is for someone to explain it.

I've been thinking, maybe if I write a script, I could read it out to them???

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Loveheart

Blue-scarved menace
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And yes, I think the idea of a private board is a good one. Whether or not we use an existing one, or have our own, I'm still not sure.

Is it possible to have 2 sub-boards in the one board, so people can get into either, but the adults' topics don't overwhelm those of the children's?

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

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amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Love the You you hide:


...I've been thinking, maybe if I write a script, I could read it out to them???

I guess it might work, but it's what I write in the script that worries me, and what people "hear" as a result. I'm ok training people on factual things. I'm not ok training people who see everything through the 'lens' of our faith. Somehow it seems to distort some of the priorities of the facts at hand. I tried doing this with a particular church.

In some people's minds it becomes a question of how the Bible's message reinterprets things, how it is up to people with disabilities to forgive prejudice and discrimination from their church, and to never, ever consider going to the law to get help as that would be unchristian of them. (Shades of the debate over Wycliffe Hall, perhaps). It has the potential to get some unexpected and sometimes plain nasty reactions, [Hot and Hormonal] and that's the point where I don't understand the prejudices and I can't function properly in the training/information-process.

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Esmeralda

Ship's token UK Mennonite
# 582

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Re Quercus's diagnosis - AIUI, a marriage counsellor is not qualified to diagnose an ASD. It needs at least a clinical psychologist, preferably a psychiatrist. So you can either ignore the diagnosis, or see someone who has the appropriate qualifications.

Re the board, I would personally be very grateful if it were open to parents/family of people with an ASD. But I would understand if members felt otherwise.

As for the name, I have been wanting for some time to name an AS group 'Aspirations*'. Whaddya think?

*(could be 'Aspierations' if preferred).

Now, a practical question: what do folks think about the trend no longer to use 'ASD' (autistic spectrum disorder) as a label, but instead to use 'ASC' (autistic spectrum condition). The latter is certainly more neutral, but is it a case of unnecessary political correctness?

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Living in Gin

Liturgical Pyromaniac
# 2572

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quote:
Originally posted by Esmeralda:
I would personally be very grateful if it were open to parents/family of people with an ASD.

Agreed, as I think it could have the potential to be very helpful.

quote:
As for the name, I have been wanting for some time to name an AS group 'Aspirations*'. Whaddya think?

*(could be 'Aspierations' if preferred).

Of the two, I prefer "Aspirations", if only because I loathe puns. [Smile]

A couple other names to consider:
The Outsiders
The Harbor (keeping with the Ship's nautical theme)
And All This Time I Thought I Was Just a Loser (okay, too long)
Roses Are #ff0000, Violets Are #0000ff, I'm a Geek and So Are You

Okay, I'm really reaching here. Somebody help me out.

quote:
Now, a practical question: what do folks think about the trend no longer to use 'ASD' (autistic spectrum disorder) as a label, but instead to use 'ASC' (autistic spectrum condition). The latter is certainly more neutral, but is it a case of unnecessary political correctness?
I tend to prefer the term "condition". "Disorder" implies something that is broken and in need of fixing, while "condition" is more like a neutral difference, like being left-handed.

[ 14. January 2008, 15:55: Message edited by: Living in Gin ]

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It's all fun and games until somebody gets burned at the stake.

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RuthW

liberal "peace first" hankie squeezer
# 13

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quote:
Originally posted by Living in Gin:
quote:
As for the name, I have been wanting for some time to name an AS group 'Aspirations*'. Whaddya think?

*(could be 'Aspierations' if preferred).

Of the two, I prefer "Aspirations", if only because I loathe puns. [Smile]
Spelled "Aspirations" it's still a pun.
Posts: 24453 | From: La La Land | Registered: Apr 2001  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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What do folks think about the trend no longer to use 'ASD' (autistic spectrum disorder) as a label, but instead to use 'ASC' (autistic spectrum condition)?

Condition? Hmm. As an informal thing, fine. As a professional 'label', no. I'd go for 'autistic spectrum disability'.

Even at the higher functioning end, it's still every bit as much a disability as other disabilities including (for example) deafness, visual impairment, depression etc. If someone is deaf, they can in theory still live a reasonably good life, but they have to make adjustments and don't get the same quality of input that others do. Same with us, potentially.

With this disability, it's completely invisible, but potentially devastating. Huge numbers of adults have no way to form proper relationships, have a family. They may end up dependent on drink, drugs or self-harm, they are much more likely to be depressed or have anxiety attacks. They might be more vulnerable to bullying, sexual attacks (from misreading signals about 'who's safe to be with', or inadvertently giving out the wrong 'signals' to someone), being defrauded...Hey, a lot of this is reading like the story of my life [Help] [Frown]

The 'label' is the only thing we have. The minute someone gets to call it a "condition", it loses disability status and a lot of people have an even harder time getting any service provider to take it seriously.

I can understand that people want a really nice 'label', but without a powerful one, we also potentially have no rights to help (or the government in the UK will possibly work towards saying 'well, it's just a condition so we'll remove their rights to help anyway 'cos it's cheaper if we do'). That's my concern.

[ 14. January 2008, 16:08: Message edited by: amber32002 ]

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Living in Gin

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Those are valid points, and I'm not disagreeing with any of them. But is the disability inherent in the condition itself, or in dealing with society's reaction to it?

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It's all fun and games until somebody gets burned at the stake.

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Loveheart

Blue-scarved menace
# 12249

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quote:
Originally posted by amber32002:
I guess it might work, but it's what I write in the script that worries me, and what people "hear" as a result. I'm ok training people on factual things. I'm not ok training people who see everything through the 'lens' of our faith. Somehow it seems to distort some of the priorities of the facts at hand. I tried doing this with a particular church.

In some people's minds it becomes a question of how the Bible's message reinterprets things, how it is up to people with disabilities to forgive prejudice and discrimination from their church, and to never, ever consider going to the law to get help as that would be unchristian of them. (Shades of the debate over Wycliffe Hall, perhaps). It has the potential to get some unexpected and sometimes plain nasty reactions, [Hot and Hormonal] and that's the point where I don't understand the prejudices and I can't function properly in the training/information-process.

Well, I've never thought of myself as a writer or a public speaker (my degree was in Maths and for many years I was a computer programmer). However I seem to be doing both now - a gift of God, I believe. Maybe a joint collaboration? There's nothing to stop you/us getting it proof-read beforehand.

What you say about the bible message is horrifying, and I thank God I've not come across that.

In my first ever sermon, I preached on Mark 9:38-end (a real humdinger for a first sermon!)

This is what I had to say about stumbling blocks, it wasn't written with disabilities/special needs in mind, but I think its relevant there too:

...and by “little ones”, I don’t necessarily mean children, although their faith needs to be nurtured. I mean anyone whose faith is weak, who looks to us for support. It may be an outsider, it may be someone who isn’t even yet a Christian. Include people, don’t exclude them because they don’t fit your ideal. Stepping stones provide a safe passage over difficult ground. Stumbling blocks trip up, condemn, humiliate, criticise.

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

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Josephine

Orthodox Belle
# 3899

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If you need to explain AS to people in your parish, you might start with this. It's extremely brief -- it started life as an article for a parish newsletter, so it had to be. To make it work better for you (or your child), you could highlight the points that are the biggest issues for you, or add points to it.

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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Living in Gin

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# 2572

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As another possible name for the board, how about "Shell Beach"?

It keeps with the Ship's maritime theme, and is an homage to a fictional Shell Beach in the movie Dark City, the mythical place where the protagonist is trying to go, but can never seem to find. Fortunately (spoiler alert), the movie has a happy ending when he discovers that he has the ability to create Shell Beach on his own terms.

(If you haven't seen Dark City, I highly recommend it. It's one of my all-time favorite movies. I explain the Shell Beach analogy a bit further in my blog.)

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Jengie jon

Semper Reformanda
# 273

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amber32002 have you ever read John M. Hull's work In the Beginning There was Darkness which deals with his struggle with Bible as a Blind person. It gives a real feeling of ambivalence towards the Bible caused both by its inclusion and exclusion of people with disabilities.

Some things are type of disability specific but others are true across many types of disability and the feeling of being "less worthy members" is one that is spread very wide indeed.

Jengie

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Back to my blog

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amber.
Ship's Aspiedestra
# 11142

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Josephine, Jengie, thank you. I shall read those.

The feeling of being 'less worthy' in faith terms is certainly true. I'm either in a position where I'm not coping with being in a church service, or I'm being a burden to the vicar etc. Neither is a good feeling.

LivingInGin, I'm sorry but I'm not sure I understood the question fully. I think a lot of the 'disability' at the high-functioning end is in the way society treats us and expects us to fit with its social rules, yes.

[ 14. January 2008, 17:10: Message edited by: amber32002 ]

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Quercus
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quote:
Originally posted by Living in Gin:
Roses Are #ff0000, Violets Are #0000ff, I'm a Geek and So Are You

[Big Grin] Thank you for a laugh at the end of the working day. Marvellous.

--------------------
"I meant," said Iplsore bitterly, "what is there in this world that makes living worthwhile?"

Death thought about it. CATS, he said eventually, CATS ARE NICE.

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Living in Gin

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# 2572

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quote:
Originally posted by amber32002:
LivingInGin, I'm sorry but I'm not sure I understood the question fully. I think a lot of the 'disability' at the high-functioning end is in the way society treats us and expects us to fit with its social rules, yes.

I agree, and I probably worded my previous post on the subject rather poorly. I guess what I was trying to say was that there are two types of limitations that come with having a disability: Those limitations imposed by the disability itself, and those imposed by other people as a response to that disability.

For example, imagine a man who uses a wheelchair for mobility. Being unable to climb a staircase would be an example of the first type of limitation, while the waiter awkwardly asking the man's dinner companion, "Would he like some coffee," is an example of the second type of limitation.

In terms of high-functioning people with invisible disabilities, I suspect the vast majority of our limitations are based on the latter variety.

In terms of whether to call Asperger's or other ASPs a "condition" or a "disability", I guess it could go either way. The two terms are not mutually-exclusive, and I see them as being value-neutral. "Disorder", though, has a very negative connotation in my mind.

Does that make sense? I may be talking bollocks here, and I'm perfectly willing to stand corrected.

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Heavenly Anarchist
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# 13313

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quote:
Originally posted by Jengie Jon:
amber32002 have you ever read John M. Hull's work In the Beginning There was Darkness which deals with his struggle with Bible as a Blind person. It gives a real feeling of ambivalence towards the Bible caused both by its inclusion and exclusion of people with disabilities.

Some things are type of disability specific but others are true across many types of disability and the feeling of being "less worthy members" is one that is spread very wide indeed.

Jengie

I must read this. I read 'Touching the Rock' many years ago and found it very insightful. I was an ophthalmic nurse and my twin is partially sighted and went to a blind school.

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Simon

Editor
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We've had a talk behind the scenes about the proposed new private board and I'm sorry to say that Ship of Fools will not be able to host it. Generally speaking, people who run private boards here are given a lot of latitude, but what we can't have are boards which might present legal problems for the Ship. It also makes no sense to have boards which broadly duplicate existing boards.

In particular, we can't approve a board whose central purpose is to gather people who self-identify as belonging to a group that really cannot be identified without professional assessment. Diagnosis of disabilities such as autism spectrum disorders ought to be done by professionals and not strangers on the Internet. To allow a board which does so is legally risky for the Ship.

We encourage people who think they might have some sort of disorder to go to a professional for diagnosis and treatment. They could also apply for membership to the Waving, Not Drowning board, which is a safe space for discussion and mutual support. Alternatively, if people still feel the need for a private board on the specific issues, there are many places (such as Yahoo) where private boards can be put together in whatever way seems best.

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Eternal memory

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Lydia
Shipmate
# 12161

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Hi Everyone

I'm not Aspie; in fact I'm very extroverted and like interacting with people in most forms, including small talk. However, I do have some social difficulties (taking things more literally than they were meant, mild face blindness, significant difficulty in judging other people's feelings about me, inability to notice people's non-verbal cues unless I am specifically looking for them, excessive interest in things other people think are boring). I'd like to ask a question that maybe one of the more socially able can help me with.

I get very frustrated with my tendency to give immediate literal answers to questions that were only asked as jokes. The person inevitably explains that they were joking, and I think "Yes, I know that, so WHY couldn't I stop myself answering literally?" The more I think about it, the more I realise that I don't know the right way to respond to a joke question - something that's said for effect, when it's blindingly obvious that everyone knows the literal answer and the literal answer is not the point. Any suggestions?

Thanks,
Lydia.

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Living in Gin

Liturgical Pyromaniac
# 2572

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Well, I guess that settles it.

I have my own web space and the ability to set up discussion forums, and would be willing to create a forum there if enough people express interest to me via PM or email. Cost isn't an issue.

Otherwise, WrongPlanet.net has very active discussion forums regarding all aspects of Asperger's and related topics.

[ 15. January 2008, 01:27: Message edited by: Living in Gin ]

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Posts: 1893 | From: Cincinnati, USA | Registered: Apr 2002  |  IP: Logged
amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Simon:
...Diagnosis of disabilities such as autism spectrum disorders ought to be done by professionals and not strangers on the Internet. To allow a board which does so is legally risky for the Ship.


Thanks for this. Please may I clarify though...? I agree that what you describe would be a bad thing, legally, but I hadn't realised that this was its intention. I thought it was going to be somewhere where those with disabilities could discuss things that related to those disabilities and people could ask how to go about getting a diagnosis from an expert [Hot and Hormonal] There's no-one here who could possibly diagnose anyone, as far as I know? A sort of duplicate of the existing support board for the parents of children with disabilities?
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Alan Cresswell

Mad Scientist 先生
# 31

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quote:
Originally posted by amber32002:
people could ask how to go about getting a diagnosis from an expert

I may be being a bit thick ... but surely one would start by seeing your GP [Confused]

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amber.
Ship's Aspiedestra
# 11142

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quote:
Originally posted by Alan Cresswell:
quote:
Originally posted by amber32002:
people could ask how to go about getting a diagnosis from an expert

I may be being a bit thick ... but surely one would start by seeing your GP [Confused]
Alas, if only.... You're absolutely right of course, yet many GPs refuse to have much to do with this, as the NHS often expects only to diagnose people who are too badly disabled to be able to get to a GP to ask to be diagnosed (catch 22 situation...) and there are so few experts in the country that the waiting lists for NHS help can be months or years long or you may not get seen at all or have to travel hundreds of miles. But that's another story...

Also now I'm worried that I've asked a question to clarify a moderator decision and that's not allowed. If so, oops - and very sorry [Hot and Hormonal]

Posts: 5102 | From: Central South of England | Registered: Mar 2006  |  IP: Logged



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