High Needs Autistic Advocates.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 66
Gender: Male
Posts: 34,491
Location: Long Island, New York
This is something to do with support needs, related and relative to community and accessibility.
LFA doesn't necessarily mean high support -- HFA doesn't necessarily mean low support.
If high support means '24-hour supervision and assistance in every adaptive daily living skills' yet doesn't need to take meds, is healthy and from a stable and safe environment...
No psychiatric issues or behavioral aggressions, even if it's so developmentally delayed, all they need is a carer -- not something complex.
No different from a well cared person with intellectual disability living their lives within their existence and capacity, really.
While they need help, don't need to be advocated by a group consisting of someone else other than those who are already providing them to begin with...
Because they already have access and community.
... What about those, regardless of achievement and abilities whether as a consequence of accomodations or lack of thereof, who are in need of therapy, in need of safe space or community, requires several hospital visits, and has no safety nets that the former has?
One doesn't need to have an IQ below 70 to have serious mental illness.
One doesn't need to be LFA to be born or trapped in a system that they didn't chose to be in or are largely inaccessible for them to have accomodations.
Identity, disorder, functioning levels -- it's irrelevant.
If anything, anyone privileged enough to be able to access doesn't need help from this form of advocacy, except as a way point of access and support for others who are in need of this particular advocacy.
So most advocates are not beneficiaries themselves like how self-advocacy does.
Potentially, everyone can be an advocate for high needs autism, benefiting high needs autistics.
But I don't think the dynamic of this advocacy doesn't have to be like those advocacies of 'profound autism' towards 'profound autistics' for obvious reasons.
While low support needs autism advocacy is more to do with fighting stigmas and dehumanization yet becoming sideways into labels and terms, 'profound autism' advocacy is more about preventing and curing autism yet consequently perpetuating stigmas implying that autistics are unwanted...
I think high support needs advocacy has more choices.
They're not fighting for identities and labels, they're not here to tell the world they're unwanted either when that's the part of their own problems.
_________________
Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
It is Autism Acceptance Month
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
This is something to do with support needs, related and relative to community and accessibility.
LFA doesn't necessarily mean high support -- HFA doesn't necessarily mean low support.
If high support means '24-hour supervision and assistance in every adaptive daily living skills' yet doesn't need to take meds, is healthy and from a stable and safe environment...
No psychiatric issues or behavioral aggressions, even if it's so developmentally delayed, all they need is a carer -- not something complex.
No different from a well cared person with intellectual disability living their lives within their existence and capacity, really.
While they need help, don't need to be advocated by a group consisting of someone else other than those who are already providing them to begin with...
Because they already have access and community.
... What about those, regardless of achievement and abilities whether as a consequence of accomodations or lack of thereof, who are in need of therapy, in need of safe space or community, requires several hospital visits, and has no safety nets that the former has?
One doesn't need to have an IQ below 70 to have serious mental illness.
One doesn't need to be LFA to be born or trapped in a system that they didn't chose to be in or are largely inaccessible for them to have accomodations.
Identity, disorder, functioning levels -- it's irrelevant.
If anything, anyone privileged enough to be able to access doesn't need help from this form of advocacy, except as a way point of access and support for others who are in need of this particular advocacy.
So most advocates are not beneficiaries themselves like how self-advocacy does.
Potentially, everyone can be an advocate for high needs autism, benefiting high needs autistics.
But I don't think the dynamic of this advocacy doesn't have to be like those advocacies of 'profound autism' towards 'profound autistics' for obvious reasons.
While low support needs autism advocacy is more to do with fighting stigmas and dehumanization yet becoming sideways into labels and terms, 'profound autism' advocacy is more about preventing and curing autism yet consequently perpetuating stigmas implying that autistics are unwanted...
I think high support needs advocacy has more choices.
They're not fighting for identities and labels, they're not here to tell the world they're unwanted either when that's the part of their own problems.
From my own personal experiences, the 'off topic' content "hits the nail on the head!"
our reddit
our discord
This is great thing to do, and is very necessary.
In the UK, there is an emphasis in the health service on co-production and getting ideas from people with lived experience. The problem is that, when it comes to Autism, such groups are populated by higher functioning Autistics. This is because, like you said, other Autistics cannot self-advocate like this. As a result, these Autism co-productions don’t encapsulate the full range of Autistic experience.
I think it’s great, too, to raise awareness of Autism as a disability. Again, in the U.K, I have heard the health service promote Autism as just a difference. But this narrative concerns me in terms of securing funding to meet Autistic people’s needs.
our reddit
our discord
This is great thing to do, and is very necessary.
In the UK, there is an emphasis in the health service on co-production and getting ideas from people with lived experience. The problem is that, when it comes to Autism, such groups are populated by higher functioning Autistics. This is because, like you said, other Autistics cannot self-advocate like this. As a result, these Autism co-productions don’t encapsulate the full range of Autistic experience.
I think it’s great, too, to raise awareness of Autism as a disability. Again, in the U.K, I have heard the health service promote Autism as just a difference. But this narrative concerns me in terms of securing funding to meet Autistic people’s needs.
_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]
our reddit
our discord
This is great thing to do, and is very necessary.
In the UK, there is an emphasis in the health service on co-production and getting ideas from people with lived experience. The problem is that, when it comes to Autism, such groups are populated by higher functioning Autistics. This is because, like you said, other Autistics cannot self-advocate like this. As a result, these Autism co-productions don’t encapsulate the full range of Autistic experience.
I think it’s great, too, to raise awareness of Autism as a disability. Again, in the U.K, I have heard the health service promote Autism as just a difference. But this narrative concerns me in terms of securing funding to meet Autistic people’s needs.
That's probably a better place to start anyways. If you haven't got a network of some sort, even if it's small, it's difficult to make any sort of progress.
The status quo where they temporarily balkanized the diagnosis and added a bunch of options before yanking it back was deeply problematic, but taking the conglomerate and balkanizing it again along support needs levels is also somewhat problematic.
Personally, I suspect that it would make more sense to figure out ways of uniting the extremes here as both the high support needs folks and the high masking folks got royally screwed in how the diagnosis was dealt with under the DSM 5 as neither group had a fair opportunity to shape the final criteria. Apart from a brief period, the high maskers have never received any sort of real acknowledgement or support and the types of things that we need are likely to have positive knock on effect for those with higher support needs. Especailly, if the advocates for the higher support needs folks could stop demonizing us as if we're siphoning off support or funding when really hardly any of that is being dedicated to us or our needs. I've struggled to find any sort of meaningful research being conducted for our benefit compared with the funding for higher support needs individuals.
[/quote][color=#0066bb] Right now I really need someone to help me with social medai stuff and socailizaton and people skills stuff as i can't get my message off that well. [/quote]
I don't want this to come off the wrong way but one thing you could do to better help get out your message would be to stop writing everything as a gigantic paragraph. It would also help if you wrote in complete sentences. It was hard for me to read and understand what you were saying because you had so many ideas jumbled together. Each idea should have its own paragraph. The topic sentence and each of the supporting details should also be written as complete sentences.
I say this as a retired certified teacher (32 years experience).
I have never heard of the HNAA and do not know what your position is within this organization. Is the HNAA a registered non-profit?
A casual internet search did not come up with an HNAA website. I did find a Reddit post (that has since been deleted) about HNAA's first (and possibly only) published article.
If you are passionate about self advocacy, you might consider searching for an autism advocacy group in your area and joining them instead of trying to reinvent the wheel.
_________________
Life with Autism blog and YouTube channel
https://lifewithautismorg.wordpress.com/
https://www.youtube.com/@lifewithautism5878/videos
And as I said earlier I completely agree Level 2's are an ignored group. It would not surprise me if the vast majority of level 2's are misdiagnosed as level 1's or level 3's. Being a 65-year-old autistic I know what is like to be part of an ignored group.
I was dxed with Asperger's(level 1?) in May 2019, by dint of my social interaction being assessed as being within the Asperger's range. My social communication was assessed as being at classical autism level . I'd say having both at classical autism level or both at what would've been Asperger's level, is different than a situation like mine. Would that be the somewhat ignored Level 2 you've mentioned?
How much do comorbids impact on functioning? Are they even included in such an evaluation? IMO it would be the height of ignorance and stupidity to say that a person in my situation ASD + schizophrenia/schizoaffective + very probable dyspraxia( mentioned by health professionals but never officially assessed) is on level playing ground with someone who just is an autistic person. I can not identify with autistic high fliers or with those at the other end of that spectrum. It can not be explained to anything near an acceptable degree by level of intelligence.
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