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cyberdad
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05 Jul 2024, 1:10 am

MatchboxVagabond wrote:
cyberdad wrote:
Edna3362 wrote:
If a self advocate starts advocating for another case other than themselves, it's no longer self advocacy.

And those who cannot actually advocate for themselves cannot be a self-advocate.


Fair point re: Level 1 folk, my issue is Level 2/3 folk can't self-advocate.

Level 1 folks often times can't because those cases go undiagnosed. It's why they were able to rewrite the diagnostic criteria to exclude higher IQ autistic folks. Whereas level 2/3 may or may not be able to depending upon what precise set of traits landed them at that level of support needs. In some cases a level 3 support needs person may actually be more able to advocate for themselves than a level 1 support needs.
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Valid point that sometimes a level 2/3 person could stand up for themselves. But by in large, they need caregivers to advocate for them. Dealing with educators and healthcare providers I'm often met with confused interactions and questions why my 19 year old can't act on her own behalf. Organisations aren't really equipped to deal with advocates.



Edna3362
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05 Jul 2024, 6:56 am

cyberdad wrote:
MatchboxVagabond wrote:
Level 1 folks often times can't because those cases go undiagnosed. It's why they were able to rewrite the diagnostic criteria to exclude higher IQ autistic folks. Whereas level 2/3 may or may not be able to depending upon what precise set of traits landed them at that level of support needs. In some cases a level 3 support needs person may actually be more able to advocate for themselves than a level 1 support needs.
.


Valid point that sometimes a level 2/3 person could stand up for themselves. But by in large, they need caregivers to advocate for them. Dealing with educators and healthcare providers I'm often met with confused interactions and questions why my 19 year old can't act on her own behalf. Organisations aren't really equipped to deal with advocates.

Point remains; if said caregiver or advocate is someone to be trusted, and what their advocacy is actually about.


It's sort of like this;

Are they sad because the autistic under their care is having a hard time?
Or are they sad because they're having a hard time because of the autistic under their care?

Which is more true to the individual caregiver?


The former meant they're being a good parent and an autism advocate, whichever side they're pushing for.

The latter?
The latter is not advocating about autism, it's about them; their hopes and dreams and expectations, and nothing to do with any autistics except us are being a nuisance, or whatever they're expected to have had been 'lost'.
If not, then those who can even exploit advocacy itself along with the social contexts and implications of caring for an autistic individual.



The problem is that not all parents are educated and/or aware.
They're in touch with the social norms, but not so outside of it and don't know any better but follow what's being said blindly including any snake oil salesman would say.

The problem is that sometimes, as soon as a parents' kid got diagnosed, the professionals would bring about nothing but fear and negativity.
No alternative paths offered whatsoever, they'd be susceptible to group echo chambers because they're grieving first.

The problem is that some parents are too hung up on certain ideas and aspirations projected into their child, not necessarily what's best for the child under their care -- in which not all parents deserved a child, let alone autistic.



In any case, I think your experience is very common and not just what happens from where you came from.

Parents who would concern for their autistic kids priorities usually lies in legal matters, organizations and institutions.
Mainly the educational system and the medical institution. Outside that and their homes, second or never.
My encounters with parents who knew better or even get it would expand past those matters whether they're able to or not.
And I won't blame anyone who do not have the capacity to get past those things.

While self advocates main focus is fighting dehumanization, stereotypes, ableism, contexts; thus representation, social models, information, the social conscious and the internet...
And direct attempts on debunking professional NT-led studies.


But not everyone is capable of being a self advocate.
Not even NTs for and towards themselves.
And not everyone is capable of advocacy, and not everyone can be trusted to advocate rightly.


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