Irish autism conference (Autism Speaks)

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Ganondox
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15 Jan 2012, 8:13 pm

athacliath72 wrote:
I'm based in Ireland and having a really hard time of it this evening, recently self diagnosed but expecting a full diagnosis in the coming months, what I really hate about AS is the way it emasculates you, ( I have one of those shy,gentle,aloof personalities with the fast, detectably nervous speech ), plus also they way you can never 'blend in' in the same fashion as a NT. I overhear an audible comment every time I go shopping etc and I've given up on Pubs for similar reasons.

I would cut my leg off to 'be cured', I've lived independently for the last nine years in two different countries thinking I was leaving home to do all those 'man things', marriage, kids etc, etc. which would somehow materialise out of thin air the way they do for NT's I may move back in with my brother and mother as I've had enough of the social isolation aspect of things.


Your not even diagnosed, so shut up. I have nothing against self-diagnosed people, but you shouldn't be complaining about something you don't even know if you have.


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Phonic
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15 Jan 2012, 8:28 pm

Ganondox wrote:
athacliath72 wrote:
I'm based in Ireland and having a really hard time of it this evening, recently self diagnosed but expecting a full diagnosis in the coming months, what I really hate about AS is the way it emasculates you, ( I have one of those shy,gentle,aloof personalities with the fast, detectably nervous speech ), plus also they way you can never 'blend in' in the same fashion as a NT. I overhear an audible comment every time I go shopping etc and I've given up on Pubs for similar reasons.

I would cut my leg off to 'be cured', I've lived independently for the last nine years in two different countries thinking I was leaving home to do all those 'man things', marriage, kids etc, etc. which would somehow materialise out of thin air the way they do for NT's I may move back in with my brother and mother as I've had enough of the social isolation aspect of things.


Your not even diagnosed, so shut up. I have nothing against self-diagnosed people, but you shouldn't be complaining about something you don't even know if you have.


"I'm not racist but...here's an obviously racist comment"
"I have nothing againt gays but...here's something homophobic"

you trollin' boy?


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Ganondox
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15 Jan 2012, 8:39 pm

It's more that you shouldn't be blaming all your problems on setting if you don't even know if that something exists, it's scapegoating.


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aspie48
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15 Jan 2012, 9:01 pm

Ganondox wrote:
It's more that you shouldn't be blaming all your problems on setting if you don't even know if that something exists, it's scapegoating.
true. and if he really is autistic he should know that being NT wouldn't magically get him laid.



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15 Jan 2012, 9:10 pm

Quote:
Hi
a number of points
1 - people with ASD were welcome, in fact one of the plenary speaker was an young man with ASD who spoke brilliantly and got a standing ovation.
2 - this was not the first autism conference in Ireland (we have had 5 in Northern Ireland in 2000, 2004, 2005, 2009, 2011).
3 - there is an uproar from parents who want ABA-based treatments for their kids. check out PEATNI webpages
hope this clarifies.
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Nexus
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15 Jan 2012, 10:10 pm

aspie48 wrote:
Ganondox wrote:
It's more that you shouldn't be blaming all your problems on setting if you don't even know if that something exists, it's scapegoating.
true. and if he really is autistic he should know that being NT wouldn't magically get him laid.


haha true that. Besides being "cured" doesn't magically give you all the inherit knowledge of socialization and turn you into a highly successful individual. You'd still have to relearn everything social before passing off as NT. Even then, eccentricities would still appear via how your personality was shaped by past experiences. I don't get why people think it's as simple as popping a pill.


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15 Jan 2012, 10:41 pm

karola wrote:
how about a holistic rather than a dualistic viewpoint


It depends what "holistic" means in this context. If it's at a conference organised by Autism Speaks then I think it's obvious that people are going to be very suspicious.

Again, it sounds like a pro-curebie event.

And, yes, a lot of this is political and sounds like Americans sticking their oar into Irish affairs. Again.



aspie48
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15 Jan 2012, 10:46 pm

Tequila wrote:
karola wrote:
how about a holistic rather than a dualistic viewpoint


It depends what "holistic" means in this context. If it's at a conference organised by Autism Speaks then I think it's obvious that people are going to be very suspicious.

Again, it sounds like a pro-curebie event.

And, yes, a lot of this is political and sounds like Americans sticking their oar into Irish affairs. Again.
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Burzum
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15 Jan 2012, 10:49 pm

Phonic wrote:
"I'm not racist but...here's an obviously racist comment"
"I have nothing againt gays but...here's something homophobic"

you trollin' boy?

I understand where he's coming from. There is a pride mentality in this community, the whole "difference rather than disorder" thing. And when someone who only recently self-diagnosed themself comes along and claims AS is so bad they would be willing to give up one of their legs to be rid of it, it's rather irritating.



Nexus
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15 Jan 2012, 11:31 pm

Burzum wrote:
Phonic wrote:
"I'm not racist but...here's an obviously racist comment"
"I have nothing againt gays but...here's something homophobic"

you trollin' boy?

I understand where he's coming from. There is a pride mentality in this community, the whole "difference rather than disorder" thing. And when someone who only recently self-diagnosed themself comes along and claims AS is so bad they would be willing to give up one of their legs to be rid of it, it's rather irritating.


Agreed, plus it can come off as trolling by saying things like that too.


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16 Jan 2012, 6:21 pm

Tequila wrote:
It depends what "holistic" means in this context. If it's at a conference organised by Autism Speaks then I think it's obvious that people are going to be very suspicious.

Again, it sounds like a pro-curebie event.

And, yes, a lot of this is political and sounds like Americans sticking their oar into Irish affairs. Again.


It does sound like something on the curebie spectrum. That and the headline "Autism on the increase according to conference - An international conference on autism has heard that the condition is on the increase" are what attracted my interest, especially as there seems to have been no epidemiological or survey presentation on which the headline could have been based.

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17 Jan 2012, 11:42 am

I've seen a fair few posts around here saying that these "Austism Speaks" people are a bunch of gits, but still not quite sure why. Could someone please enlighten me?

Or even better, post some links to explain what it is they stand for, and why the general concensus here appears to be that these people are totally awful.

Would be much appreciated!



aspie48
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17 Jan 2012, 7:27 pm

Kelspook wrote:
I've seen a fair few posts around here saying that these "Austism Speaks" people are a bunch of gits, but still not quite sure why. Could someone please enlighten me?

Or even better, post some links to explain what it is they stand for, and why the general concensus here appears to be that these people are totally awful.

Would be much appreciated!
they spread misinformation, censor people, exclude autistics from discussions, back anti-vaccine conspiracy theory, and misspend money.



Tequila
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17 Jan 2012, 7:30 pm

Kelspook wrote:
I've seen a fair few posts around here saying that these "Austism Speaks" people are a bunch of gits, but still not quite sure why. Could someone please enlighten me?


Because they're curebies funded with quite a decent sum of money. That spells danger for most autistics.



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18 Jan 2012, 7:11 am

Tequila wrote:
Because they're curebies funded with quite a decent sum of money. That spells danger for most autistics.


There is a schism between the parent- and professional-lead organisations like Autism Speaks and many people on the autism spectrum. Our challenging behaviours just get worse as we age, and we are terribly ungrateful! These organisations have a poor record of involving people with autism in any decision-making, and a history of promoting the parental motives of cure and normalizing therapeutic interventions, including some interventions that are unpleasant and / or harmful (chelation for your kids, anyone? http://www.autismspeaks.org/search/apac ... /chelation).

The position on genetic selection is unclear - which is a big problem in Ireland where Pre-implantation Genetic Diagnosis (PGD) is now available (http://www.rte.ie/news/2012/0117/fertility.html), not subject to any regulation other than safety (http://www.rte.ie/tv/theafternoonshow/2 ... on876.html) and already covers a wide range of conditions including deafness (http://www.genesisgenetics.org/testing.html). The genetics of autism is a hugely important topic, but the research focus appears to be towards PGD, not diagnosis, aetiology and health interventions.

This conference appears to have a bias towards the same parent and professional focus (e.g. http://www.nuigalway.ie/psy/abaresearch.html), and virtually no involvement of people with autism, especially adults living with autism.

For those outside Ireland, there have been some traumatic court cases in which parents (Sinnott, O'Cuanachain) have sued the state for failing to provide suitable education for autistic children, but have insisted on one specific form of support (ABA), and cases where schools (Lucan Educate Together) have sued to uphold the right to reject autistic children. The state has probably spent more defending itself and pointlessly suing parents for the state's legal costs than has been spent on autism education. These cases, along with parental support for Andrew Wakefield, have been the defining face of any 'autism movement' in Ireland.