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CockneyRebel
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26 Oct 2014, 9:28 pm

I'd like to flush Autism Speaks down the toilet where it belongs.


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26 Oct 2014, 10:32 pm

Thank you Aspendos for alerting us to this. As perhaps many WPs will know ( :lol: ) I am not often lost for words, but reading the programne did tend to have that effect for a while. I just gaped at it, I could hardly believe they would be so crass, so marginalising of us, and so ignorant. And right in the first part of the programme, the unfortunate use of the stigmatising and marginalising term "pathological" leapt out and hit me between the eyes.

And therein lies a clue, I think: they regard us as creatures so pathologically damaged that we are incapable of contributing anything valid; we are objects to them, incapable of representing our concerns and reality. Additionally, it is paternalistic - as if, no matter what our age and maturity, we are all children who need "responsible normal adults" to speak for them. This is outrageous. The church goes on an on about human dignity and respect as primary values it holds all the time and then treats us with a complete lack of dignity and respect.

In the 21st century, this is not just truly shocking, it is monstrous. I hope this comes to the attention of the Guardian newspaper in England, or the Observer - they are most likely to publish an article articulating why this is a monstrous insult to all ASD people.

Right now, I need a strong cup of tea. But thank you again for raising my consciousness of this matter.

Alex, I think that the relevance re Autism Speaks is that that organisation is regarded as ipso facto eligible to be part of what post-modernists call "the dominant discourse" and to "contribute to the dominant narrative" - while we are denied not only equal rights to them, but any rights at all. In effect (as things stand) we are silenced, voiceless - and therefore powerless - regarded as passive objects, with no power of "agency".

A simpler analogy perhaps is that say someone organises a significant conference on gay lives, experiences and issues and not one gay person is invited to be a presenter. Imagine the uproar..... the demonstrations .... the media coverage....

I would like to suggest that we try to formulate some kind of formalised WP protest (perhaps via you Alex?) though I know the old saw about herding cats... still, you could invite individual submissions from WP members and edit those into a coherent document to send to the Vatican and the media. However this may take time that you don't have or may not be something you are interested in doing. Just a thought...

When people truly want to help in the liberation of a stigmatised/marginalised minority, they don't speak for it, they speak alongside it. Speaking for the oppressed simply reinforces their existing dehumanization and contributes to the oppressed group being further prevented from having a public voice. So replacing our voices with Autism Speaks is not only not a solution, it adds to the size of the problem, and intensifies the impact of that problem for us.



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27 Oct 2014, 4:06 am

AspergersnotAutism wrote:
Intresting as Catholic with Aspergers I don't like such things but maybe pope etc are just ignorant of Autism Speaks views. I particularly hate stupid NTs who are probably not attractive, or smart and obsessive over one thing only in their life maybe want those of us 10 points higher on the spectrum thus Aspergers diagnosed to be killed when we may be smarter or more empathetic or more social or all 3 than them... Also they seem to really think we wear big ear things like the guy in something about Mary and cant speak are ugly, etc. This association with Aspergers and Autism is quite bad in my view, Yes its on the spectrum but I wonder whose agenda it served by redefining Aspergers to be the same as autism. How many psychologists really agree with it....Its funny because said useful idiots on daily mail website probably wouldn't know I had any thing wrong if I deliberately tried to act like a more severe socially challenged person, they have a picture of someone with droopy forehead massive in height eyes and a totally blank, slightly slow looking unattractive face. The linking of the 2 is quite making people have misconceptions of people with Aspergers.


Off Topic:
The agenda as I see it is two fold silence Autism advocacy and get rid of the "higher" end of the spectrum. Aspie advocacy threatens the cash inflow of Autism Speaks and psychologists and drug companies. If it's a difference, not a pathology no need for Autism Speaks pity party, no need for drugs to "fix" us, less need for therapy. Even without advocacy it is harder to convince people to have a pity party for HFA then the more "severely" affected. These interests dovetail with the interest of insurance companies. The awareness of autism spectrum lead to much higher levels of diagnosis increasing the insurance companies cash outflow. Aspergers was the most notable of the "higher functioning? autisms. Now that they killed off the official Aspergers diagnosis and convinced a large portion of the community it was the correct thing to do by stigmatizing people that identify with Aspergers they will go after the idea of the HFA itself. I predict like with Aspie you will start to read post saying that people who who describe themselves as on the spectrum are excuse makers, elitists, ableists who don?t want to associate with autism (your post is not helpful in this regard).

As I have posted before I view the Asperger relationship to Autism relationship in a similar vain as New York's relation with the USA. New York is different than the rest of America in significant ways (Many more single people, they take Public transportation rather than cars) yet in some ways such as capitalism and extroversion New Yorkers have very strong American traits. People in New York identify as New Yorkers, they identify as Americans and they identify as both. Nobody would even think of saying you have to choose one or the other.

If cure or genetic elimination happens it is going to affect the ?severe? people before older adults, if it affects ?mild? adults at all. The only reason the powers that be cared was that the uppity advocates were a threat to their agenda. If we are destroyed as a political force it will go back to the way it always was we won?t be thought of at all.


Back to the topic:
I hope we can get a 5th column into this conference and give them holy hell (pun intended)

I have not brought up this before because I feared the sensitivity and deep feelings religion brings up in general, and the fact I am not Catholic would disctract from the opinion I have. But now that the Catholic Church and Autism Speaks is a thread, there is no reason to let fear prevent me from opining. Bob Wright is a graduate of Chaminade High School prestigious Long Island Catholic institution as well the College of Holy Cross a well known Jesuit institution. That might explain one reason Autism Speaks was invited. It might explain why Autism was portrayed as Satanic like in the ?I am Autism? documentry.


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Last edited by ASPartOfMe on 27 Oct 2014, 9:36 pm, edited 1 time in total.

DW_a_mom
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27 Oct 2014, 4:31 pm

Moromillas wrote:
DW_a_mom wrote:
I long ago stopped blaming other people and organizations for turning to Autism Speaks. It is the biggest beast out there so, to the NT world, it has credibility. What I do instead is take the opportunity to educate people about what the issues are that the ASD community has with the organization, and point them to organizations I hope they will choose to support either instead of or in addition to the support they have in place for Autism Speaks.

You can't expect anyone outside of our small community to understand what our issue with Autism Speaks is. You just can't. Even parents of ASD kids tend not to know. People don't have time to fully research and understand all the complicated issues in the world, so they tend to turn to the ones with the strongest public face. That is Autism Speaks. They've marketed themselves brilliantly (despite the giant missteps) and have contacts the rest of us don't.


I don't think the cause is solely that they're such good marketers, but rather that people do what they always do, and don't listen to AS people, I think that's a large factor. They've such extreme views on Autism and Asperger's that you have to ask how people not know about it, it's hard to chalk it all up as silly ignorance. You don't, for example, find most people considering the KKK or the Aryan brotherhood as respectable charities.

Edit: ISIS -- ISIS is a perfect example. They've been considered internet marketing and social media geniuses, and yet, the majority doesn't subscribe to ISIS or their views of a caliphate through violent means.


You can't compare Autism Speaks to ISIS. Or the KKK. Or the Aryan Brotherhood. That kind of thing costs you credibility with the general public.

Autism Speaks is misguided in how it approaches things, but it is NOT born of "hatred" of autistics, and it is not actively trying to kill off or get rid of a group of living people. We disagree with them strongly, and no doubt they have an unjust superiority complex to those who are ASD, but the fight is about approach and interpretation, not hatred and fear on their end, IMHO.


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DW_a_mom
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27 Oct 2014, 4:41 pm

Please, all, also remember to much of the world Autism is the severe end of the spectrum, and the concept that ASD IS a spectrum a item of words, only, with no tangible feel to it. Face it, no one is holding a conference to figure out what to do for those of you who can hold jobs, get confirmed in your religion, and so on. That isn't what they are thinking of when they think of "autism." They are thinking of the crisis of families with adult, non-verbal, violent, poop-on-the-wall children where mom and dad worry what will happen to their adult child when they die. They are thinking of the parents so stressed out from caring for their children that they kill themselves or their children. Those are the things people hold conferences to address; no one feels a need to hold a big conference to figure out what to do about someone like my son because they have no trouble staying on top of it. To them, despite the paperwork that says ASD, he isn't the face of autism. Nothing about him is a crisis.

I do think our local Catholic school must have ASD students in attendance, and I am thinking it could be worth asking the principal if she has heard of the conference and has any thoughts on it. Someone like her will have a much stronger voice on the representation issue than you or I. The local Catholic High School, too.

Dang, I'm just so busy ... how can I get this squeezed in? Let me check the date on that again. I have some local people I could at least write to.


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27 Oct 2014, 4:52 pm

I agree that comparisons of A$ to ISIS, KKK, etc. are absurd and unhelpful. I think those who say they are only concerned about curing the "severe" end should stop saying 1 in 68. There are many who only think the severe end is a curse, but there are also many who feel that way about the entire spectrum.



Last edited by PlainsAspie on 27 Oct 2014, 7:32 pm, edited 1 time in total.

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27 Oct 2014, 5:18 pm

I've reached out to the Academic Support Department of the local Catholic High School. We will see if that goes anywhere. Like I posted earlier, I KNOW Catholic Schools are serving ASD kids and, thus, have a vested interest in the issue. The main question is if Rome realizes that, or if the teachers feel they have the ability to say or do anything. But, it is a reach out.


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27 Oct 2014, 5:29 pm

I will write to the Catholic archbishop in my city, and post news of the conference and reasons for opposition to the representation on Facebook.

Hopefully, these small individual protests will collectively begin the snowball effect, gaining speed and size with momentum.



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27 Oct 2014, 10:31 pm

PlainsAspie wrote:
I agree that comparisons of A$ to ISIS, KKK, etc. are absurd and unhelpful. I think those who say they are only concerned about curing the "severe" end should stop saying 1 in 68. There are many who only think the severe end is a curse, but there are also many who feel that way about the entire spectrum.


Unhelpful in a marketing sense I agree with, Absurd not so much.

The philosophy is not dissimilar. They love somebody or something In the case of the KKK America and White people, ISIS Muslims, Autism Speakes their kids, the thing or person they love has been taken over by a conniving evil entity or group. The thing or person they love has to cleansed and "recovered". Autism Speaks is not going to burn Autistics at the stake or behead Autistics or carry out exorcisms. If they did that people would be turned off, the money would stop coming in and the Wrights would be in jail. Be it is "cure", identifying gene's so autistics will be aborted or the newest idea intensive ABA between birth and age 2 before the Autism traits takes effect. These are more acceptable methods but "accomplish" the same thing.


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Last edited by ASPartOfMe on 28 Oct 2014, 11:51 pm, edited 1 time in total.

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28 Oct 2014, 2:02 am

DW_a_mom wrote:
You can't compare Autism Speaks to ISIS. Or the KKK. Or the Aryan Brotherhood. That kind of thing costs you credibility with the general public.

Autism Speaks is misguided in how it approaches things, but it is NOT born of "hatred" of autistics, and it is not actively trying to kill off or get rid of a group of living people. We disagree with them strongly, and no doubt they have an unjust superiority complex to those who are ASD, but the fight is about approach and interpretation, not hatred and fear on their end, IMHO.


Oh. I was actually making comparisons to their marketing campaigns, and pointing out that there are likely other factors involved than just good marketing. Where public opinion of Speaks is favorable with their adequate marketing, while the public opinion of ISIS is dismal when their marketing is considered genius.


But now that you mention it....


They feel they're disenfranchised, that the situation they're in shouldn't be that way, and see that there's a need for help. They want to change the world they live in, "for the better" and misguided fools that they are, become willing to do unspeakable wicked things to achieve their goals.

The ISIS, thing, that too isn't borne out of hatred, if it was, it would have fizzled out a long time ago. Sunni, they feel they've a raw deal, oppressed even, and subscribe to the idea of changing the land to a caliphate (where church and state are one and the same) (or in this case, mosque and state) and it's out of love for the Sunni community with "Oh, everything was so much better when it was a caliphate, if only we could go back to those golden days, then everything here would be much better." And of course they're able to justify all sorts of disgusting things. Funny thing is, in the days of the caliphate, everyone was actually very liberal, and very scientific, believe it or not.

I did cringe when you mentioned "living people", there are those that subscribe to the idea of eugenic elimination, and would gladly talk to you about parental rights when it comes to abortion.



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29 Oct 2014, 2:04 am

Well, one thing we can be 1000% sure of: the Catholic church would never support a search for a prenatal test that could do no more than identify if parents wanted to abort a child they considered less than perfect. The Church is opposed to abortion in all cases. So no way is Autism Speaks going to be advancing anything bordering on eugenics at this conference.

I haven't heard back on the earlier email I sent but I know someone else I will try to contact. All we need is one person willing to advocate.


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29 Oct 2014, 3:21 pm

DW_a_mom wrote:
Well, one thing we can be 1000% sure of: the Catholic church would never support a search for a prenatal test that could do no more than identify if parents wanted to abort a child they considered less than perfect. The Church is opposed to abortion in all cases. So no way is Autism Speaks going to be advancing anything bordering on eugenics at this conference.

I haven't heard back on the earlier email I sent but I know someone else I will try to contact. All we need is one person willing to advocate.


Whether it's their intent or not, by researching genes they run the risk of creating a prenatal test. Jerome Lejuene, who discovered Down Syndrome was caused by trisomy 21, was a devout Catholic who never intended for his discovery to be used in a way that led to abortions. http://en.wikipedia.org/wiki/Jérôme_Lejeune

Thank you for taking the initiative and contacting people within the church.



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29 Oct 2014, 3:46 pm

PlainsAspie wrote:
DW_a_mom wrote:
Well, one thing we can be 1000% sure of: the Catholic church would never support a search for a prenatal test that could do no more than identify if parents wanted to abort a child they considered less than perfect. The Church is opposed to abortion in all cases. So no way is Autism Speaks going to be advancing anything bordering on eugenics at this conference.

I haven't heard back on the earlier email I sent but I know someone else I will try to contact. All we need is one person willing to advocate.


Whether it's their intent or not, by researching genes they run the risk of creating a prenatal test. Jerome Lejuene, who discovered Down Syndrome was caused by trisomy 21, was a devout Catholic who never intended for his discovery to be used in a way that led to abortions. http://en.wikipedia.org/wiki/Jérôme_Lejeune

Thank you for taking the initiative and contacting people within the church.


I think what you've said here is a valid point to make in the letters people are sending in protest of Autism Speaks being the sole representative.

Although ... we're in a tough spot with the genetics research, because knowing it is genetic would aid people in accepting their kids as they are, while also getting others to think pre-natal testing. Fortunately, the science is leading away from a SOLELY genetic cause, and even if there is one, it doesn't look like it will be a single, clear marker, gene. It is looking like a combination of factors. I don't have an issue with research, but researchers DO need to think about how others might use the results.


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29 Oct 2014, 5:41 pm

DW_a_mom wrote:
Well, one thing we can be 1000% sure of: the Catholic church would never support a search for a prenatal test that could do no more than identify if parents wanted to abort a child they considered less than perfect. The Church is opposed to abortion in all cases. So no way is Autism Speaks going to be advancing anything bordering on eugenics at this conference.


Selective abortion is a little bit different to elective abortion. For example, in the case of Huntington's, I image that the parents would be rather devastated, and that the question to abort or not would be quite a difficult one for people of faith.

Instead of being viewed in a similar light to left handedness, or saying that's wonderful or interesting, parents are devastated, and do liken it to a sickness. People for a "cure", do argue that their quality of life is severely impacted (because of Autism and Asperger's), and that it's a sickness. They can see the areas where we're disenfranchised, like equal opportunity in jobs, but instead chalk that up as Autism and Asperger's caused that.

Now, for the conference, if you have a look at all the related material, you'll see that it's all previous conferences on sickness, curing the sick, caring for the sick, the nature of sickness etc. And, it's quite alarming to see that, in conjunction with Speaks. I'm going to go out on a limb here and say that the Vatican would probably view AS as a sickness. Alarming because the Vatican is quite a large and influential mouth-piece to so many followers.

Edit:
DW_a_mom wrote:
Fortunately, the science is leading away from a SOLELY genetic cause,


Ah, but then, that would give ammunition to curebies, it seems you can't win either way. They would see that and go "Ah ha! You see? They are damaged."



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30 Oct 2014, 12:36 pm

Ultimately, the community is going to have to stake out a more middle ground on the issue of what is and is not a disability. While the community focuses on the neurological difference aspect and how there are positives to it (which there are), it is apparent to my son and I that ASD DOES come with a few real world disabilities that go beyond needing more understanding. The work load and stress issues he faces, for example, ARE limiting to his life and always will be. Same with the dysgraphia co-morbid, which is becoming more and more common among ASD kids (why? who knows). We really do our community a disfavor by ignoring the effect of those types of issues. That doesn't diminish how the focus should be on acceptance, although it does make it all much more nuanced and complicated.

On the first point, within the Catholic Church, this is a non-issue. Abortion is not OK despite the genetic disease you see the child suffering through. Pope John-Paul II was actually an advocate of the value of suffering and if I recall correctly either issued papers on it in the last days of his life or had been working on it. The Catholic Church truly sees ALL life as having value, and does not want us to play guessing games with it; if a life exists, it is because it is MEANT to exist. I realize that not all members of the church will follow that thinking, but the CHURCH is amazingly consistent on this and will not change. Since we are talking about an official conference, you can't inject other thinking or intentions, although it IS valid to warn them that average citizens might.


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30 Oct 2014, 6:19 pm

DW_a_mom wrote:
Ultimately, the community is going to have to stake out a more middle ground on the issue of what is and is not a disability. While the community focuses on the neurological difference aspect and how there are positives to it (which there are), it is apparent to my son and I that ASD DOES come with a few real world disabilities that go beyond needing more understanding. The work load and stress issues he faces, for example, ARE limiting to his life and always will be. Same with the dysgraphia co-morbid, which is becoming more and more common among ASD kids (why? who knows). We really do our community a disfavor by ignoring the effect of those types of issues. That doesn't diminish how the focus should be on acceptance, although it does make it all much more nuanced and complicated.

On the first point, within the Catholic Church, this is a non-issue. Abortion is not OK despite the genetic disease you see the child suffering through. Pope John-Paul II was actually an advocate of the value of suffering and if I recall correctly either issued papers on it in the last days of his life or had been working on it. The Catholic Church truly sees ALL life as having value, and does not want us to play guessing games with it; if a life exists, it is because it is MEANT to exist. I realize that not all members of the church will follow that thinking, but the CHURCH is amazingly consistent on this and will not change. Since we are talking about an official conference, you can't inject other thinking or intentions, although it IS valid to warn them that average citizens might.


Oh, I wasn't aware that was up in the air, it's certainly not being debated in our crew, we're quite clear on this, none of us are disabled.

Therein lies the problem; You have the worst examples, no offence, being seen as "the real AS," when people talk about AS, they always point to examples of children, then make broad generalisations about AS people. It's never the AS people that are doing well that are representatives, and it's always the parents of the worst cases that are screaming the loudest. You mentioned dysgraphia becoming more common with AS, ok, the numbers aren't there, and I can't see this happening personally.

And part of the problem is something you hinted at. If you mention that the number of AS people with a disability is quite small, you'll usually get "Oh, you're throwing them under the bus! We shouldn't ignore them, we should be supporting these people!" No no, no one is saying we should abandon anyone. Yes, we should absolutely help people with speech impairment, motor disorders, and intellectual disabilities, absolutely. However, it is one hell of a generalisation to say that AS is all of those things. NTs aren't being viewed in a similar fashion, there are plenty of NTs that have a speech impairment or motor disorder, plenty of NTs that are intellectually disabled, they even made one a president. (yes, that last part was a joke)

AS really is being used as a catch-all for anything negative. Clumsiness is a classic example: Clumsiness is often associated with AS, when in fact, there are plenty of NTs that are clumsy. Yet NTs aren't saddled with "NTs are clumsy", and instead of people thinking that ridiculous, they can quite easily consider these generalisations factual.

Not exclusively members of the church, but more a global thing. They are influential, and can spread the idea that AS is a sickness, making the idea of eugenic elimination more comfortable for people.