Were there any ND Advocates and Parents Advocates collab?

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Edna3362
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19 Nov 2023, 12:10 am

In a more official and formal manner -- not just online supports, not just posting about parents asking ND POVs, or NDs asking for resources or simple networking and exchanging stories...

More like writing policies together, intertwining both sides of the stories, or better yet; like a cultural exchange, one would compromise one and the other, both negotiating professionals at the same time, etc...

And also not limited involving autism and autistics.
Are such collaboration happen elsewhere?

And if so...
How do those 'sides' adjust to one another?
Would they need something like ND parents of ND children as mediator kind of situation?



I'm aware of how polarized the US can be.
But from where I came from... It can be different.


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carlos55
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19 Nov 2023, 9:40 am

It depends what you mean by ND advocates.

The word means lots of things to different people.

At the basic governmental and medical level its simply a polite and patient friendly way of describing pathology in brain working.

It also means promoting opportunity in employment and elsewhere including fairness for autistic or those with other brain issues.

That’s the mainstream view of what ND is and means.

Then you have the more extremist and controversial views including denying pathology anti cure , autism is just a harmless difference etc.. that I suspect many wont support or have in common


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Edna3362
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19 Nov 2023, 11:59 am

carlos55 wrote:
It depends what you mean by ND advocates.

The word means lots of things to different people.

At the basic governmental and medical level its simply a polite and patient friendly way of describing pathology in brain working.

It also means promoting opportunity in employment and elsewhere including fairness for autistic or those with other brain issues.

That’s the mainstream view of what ND is and means.

Then you have the more extremist and controversial views including denying pathology anti cure , autism is just a harmless difference etc.. that I suspect many wont support or have in common

First is optional.
The second seems close.
Third is a joke. :lol:


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NibiruMul
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09 Dec 2023, 5:18 pm

From what I've noticed, autistic advocates and parents of autistic kids are often pitted against each other in discourse, and the two groups generally don't see eye-to-eye. You still see a lot of parents of autistic kids supporting Autism Speaks, using that offensive puzzle piece, and wanting to cure autism. I remember years ago I heard somewhere that there is a difference between the autistic community and the autism community. Actual autistic people fall under the former, while parents of autistic kids fall under the latter.



carlos55
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09 Dec 2023, 5:56 pm

NibiruMul wrote:
From what I've noticed, autistic advocates and parents of autistic kids are often pitted against each other in discourse, and the two groups generally don't see eye-to-eye. You still see a lot of parents of autistic kids supporting Autism Speaks, using that offensive puzzle piece, and wanting to cure autism. I remember years ago I heard somewhere that there is a difference between the autistic community and the autism community. Actual autistic people fall under the former, while parents of autistic kids fall under the latter.


Its not quite black & white like that. Different people, different views, some autistic themselves others parents of autistic people.

In the ND movement you have loud voices shouting their one sided opinions all over their own web sites & spaces, a lot of the time they will make it sound like they are talking for everyone who`s autistic.

Many are very high functioning, so have the resources, in terms of cognitive ability, skill and some money for slick websites and videos, so it can give a false impression they have a lot of support.

Then you have a quiet majority or a significant % if you like, either too disabled to voice their different opinion, disillusioned with it all, or lack the confidence to give their side.


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Edna3362
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09 Dec 2023, 8:42 pm

So does this confirm that no one is this forum who had yet encountered such collab?

And likely think it's in theory, improbable?


The closest I saw somewhere was advocate parents raising autistic children to hate autism and make them 'speak' with them to advocate for a cure.
But that's not the kind of collab I'm looking for.

Heck, I'm not sure if that's even a collab when one practically raised another into doing the same than the latter making such conscious decision.

And if I want to see a cure collab of both sides -- I'm very sure it's not in the place of hate and prejudice, but alas, history of ableism beat it to a punch.


Hm.
I can see how it likely won't ever be in polarized cultures like in the west.
But there's more to it somehow.


But from where I came from, there are already long time and veteran advocate parents who are looking for ND self advocates for the longest time, in hopes that such concept is possible.

And ND self advocates who wants to see a group pf parent advocates who either 'gets it' or is more than willing to learn to.

In this country there is such thing as PWD advocacy, but not specifically about NDs. Neurodiversity is still an enigma from where I came from -- no clear cut history, no stupid contexts that gets in the way unlike how ND movements are formed elsewhere...



In any rate, I've stumbled into such collab and participated in such collab.

It's a messy affair. :lol: But it's fun for me despite that it's a voluntary work that requires commitment.

The key differences are these -- should one want to attempt this -- are having both trauma informed sides, and commonly priorities around the circumstances around accessibility in consensus.

I had never seen another group of any side who does the former until those moments -- at best, I saw, was use it against another.
But not where I got myself into -- one had to mind everyone that it calls for empathy, not oppression Olympics.

The latter is particularly a different battle due to the differences in economics status of the majority.

In which the two sides priorities doesn't collide; NDs want awareness, acceptance, accomodations.
Parents on the other hand just wants more accessibility and wanting to know better than what professionals had initially told them (in which, usually all in pathological language)

Also there should be no room for mindgames.
But in a competitive and individual inclined culture, that is unlikely.
But, this is not a competitive and individual inclined culture -- this is a family centered culture.

So each side has a prerequisite of knowledge should they want to stay and collaborate -- and, both sides intimidate one another, had to learn, unlearn, relearn.

I have no such issues; it seem that I'm amongst the few who don't.

In which, individuals, are all networks themselves. The more people involved and knowing, more POVs, more different skillsets, the better.

In this culture, this is somewhat easier to pull off -- having several contacts or means of contacts and with different experiences.

There are no need for 'strong values', but simply the consensus that each side has a space and not be a toxic person who dominates and sways the whole room.

At any rate, person first vs identity first has no room to police one another.
And that autism community is mainly a family affair -- while autistic community is an individual to community affair.


We would love to learn from abroad, but I pray others here doesn't mimic certain practices and bring issues that do not exists.

From parents, it's the professionals who are yet to be ND-affirming.
From NDs, it's the internet in which one likely yet to call for discernment between issues from abroad and local issues.


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