High Needs Autistic Advocates.

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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.

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.

Hi! I know that the last post on this thread is from July last year, but I just found out about the High Needs Autistic Advocates project through a Google search.

I’m diagnosed as Level 1 (even though my support needs are more like low to medium), and I felt the need to log in on this forum after a long long time, because I’m a, so-to-speak, old-school advocate, since my autism advocacy went from 2016 to 2018/19, and we used to focus a lot on people with medium and high support needs, we always wanted to prioritize their voices (this was mainly on X Twitter). It makes me really angry that we have gone backwards on that!

I’d love to amplify the voices of Level 2s/3s, since you are the most vulnerable people on the spectrum. I also follow some accounts of Level 2s/3s on Instagram and some of them are very relatable to me. Even more than the average Level 1s that are popular on Instagram and Tik Tok, and even YouTube.

I’m sorry to hear the High Needs Autistic Advocates project has been discontinued, but I wanted to reply on this thread to let you all know that I will always be there for you if you need me. (I’d try to go into that Discord server, but I don’t even have a Discord account )

What does it mean in practice to "amplify voices"?

I hope this is not an odd question to ask on a forum for autistics.

Commenting so that it saves on my posts list so I can return to this later. Please ignore.

I'm confused. So you don't want nonverbal people to contribute? Or do you not think it's a disability? It is a disability and a substantial support need therefore lands level 2 or 3. Why do you think it's easy to advocate for yourself if you don't speak, yet you can bathe yourself and make sandwiches? It's not true. Autism or not - have you ever heard (pun not intended) of the struggles of the Deaf community?

From what I have further gathered from the thread, it looks like indeed there are no specifics neither is there a plan. Am I right? You just want someone else to do the communication ("support")?

No, it is not an odd question at all

To me, it means to advocate for people who are more oppressed than I am, because the general population usually listens to the more privileged groups.

So, in this case, I, as a Level 1 autistic, could amplify the voices of those with higher support needs than me, because I’m good at using the Internet and social media, and the algorithms mostly benefit people who are palatable and simply quirky (which doesn’t mean that this is what I am, though ). Unfortunately, people who are visibly autistic are afraid to show themselves on the Internet (on reels and such), because people quickly jump there to make fun of them… And the saddest part of all this is that, most of the time, it’s other autistics who make fun of them

Hope this explanation made sense!

I finally remembered how to quote on this forum, yay!!

As I said on the other post, I’m sorry to hear that you had to discontinue this wonderful project! Please, let me know if you ever come back to it. I’d be happy to help you all.

PS: I was watching Pokémon this morning and I saw Pieplup and it reminded me of you (I used to be a huge fan of Pokémon as a kid, but I only learned the first 250 ones, hehe)

Thank you for the explanation! It clarifies a lot. So amplifying voices of those wirh higher support needs means in this case means that others with lower support needs advocate for them.

For those who are Autistic in the historical sense, recognition as a minority should be a forgone conclusion, but there are elements at work who are determined to prevent that.

Who or why isn't clear, but it looks like one of the techniques used is to keep on expanding the "autism" label, and explains why it is happening. There is no logical reason why the autism label that Kanner used to describe a small handful of kids who appeared to be Autistic, should be applied to those for whom the Autistic label doesn't apply (it's not even tested for!) nor is there any for assuming all those who are Autistic must have autism!

When trying to raise the issue on other sites, the usual response is indifference, but here are always a few individuals who seem unusually determined to quash the idea (why should any normal person be motivated to do that?).

For instance, a while back on Quora I asked why those who chose to be different, like Jews and Rastas, vegans etc, enjoyed some protection from prejudice whilst those who had no choice in being different were always open season. I was ridiculed by one troll for suggesting that there was any similarity between us and them, which rather missed the point I was trying to make, but,however ridiculous, it was made in the sort of language that leaves a misleading impression on the herd humans.

You’re more than welcome!

I’m not sure I got your point, so I’ll try to reflect on some of the things that you’ve said.

It’s been a long time since the 1940s, when Kanner first described autism. The diagnostic manuals (such as the DSM and the ICD) have evolved a lot. Sure so many people all over the autistic spectrum were missed until quite recently, I’d say, until the mid-2000s. But diagnostic labels change all the time. So I don’t think we have to stick to Kanner’s first descriptions of autism and exclude people to whom the Kanner label doesn’t apply. (I want to note that I wouldn’t even meet the old criteria for Asperger’s, but that of High Functioning Autism, since I had a speech delay and didn’t start speaking until I was 3. So the Autistic label would apply to me since 1992 [year of the ICD-10], when I was 2).


I mostly agree with you here, but I wouldn’t exactly include Jews in the category of not being “open season”, and you can’t always really choose to be of a certain religion.
That being said, the society can be so unfair towards so many people. I see your point there, because I’ve had some acquaintance rant about his time in high school on why everyone was so supportive towards a gay student, while he, an autistic individual, was heavily bullied. That must’ve been so unfair!

However, this is not a competition on what oppressed group is more oppressed. Not that vegans, for example, are exempt from criticism, anyway. We should stop comparing ourselves to others because, after all, we all face a lot of prejudice, whether we are from one minority/oppressed group or another (or an intersection of several). We really have to give up the fight and start getting together in order to fight the system.


PS: The above example is not meant to say that gay people choose to be gay. No one chooses who they are sexually attracted to. It was just that this conversation reminded me of that boy’s rant.

I struggle to understand the point of the post as well. Is it that classical autism has struggles beyond social exclusion and judgement?

How is it evolution to take a description that referred to a small sample or all Autistics, as it was then understood, and apply it to kids who are not autistic by that definition? What purpose does it serve other than to muddy the waters? If you were to argue that autism was something separate from being Autistic (which is directly contrary to the ongoing debate) it would at least seem plausible, but the reality is; most of those who are Autistic, but do not have autism, still exist! To ignore that fact it to help those who are so determined to deny us minority recognition.

You say we shouldn't stick to Kanner's lable, but how does it help anyone to open up the autism label to include those who do not fit the earlier Autistic description? How does this make research any easier? It's not a badge to be collected; most people now described as having autism, do not fit the description of what it should mean to be Autistic!

It is not to mufdy the waters. The understanding of the condition is changing.

Being "autistic". Autistic traits don't have to be accompanied by a "loss of function", and they aren't pathological on their own. However, there is the medical condition called ASD that by definition is a "loss of function" and it means the traits are either because of their extent or context of the individual as a whole - a problem and this person needs help: medications, therapies, accommodations, sick leaves, disability benefits and so forth.

So the autistic crowd is varied. I don't think anyone implies that higher needs or "levels" autism ceased to exist and doesn't need advocacy. And it, by definition, is a debilitating condition, not a difference.