Lower functioning autism
25 May 2010, 5:07 pm
In that particular context I'd be fluctuating between intensive and pervasive. But of course in the real scheme of things, even for people needing "pervasive" support there are things they don't need help with, sometimes including things most people do need help with. Which is another way even that model falls apart. But it's better than functioning level.
Exactly! That's why I think your idea of categorizing by support needs is such an excellent one. When it comes to non-disabled people and government-sponsored support, the level of support needed really is how the categorizing is done. It is a convenient, efficient and non-stigmatizing way to sort people who need support.
Nobody says that the people who need to sleep in the highschool gym for a week after a local disaster are high functioning whereas the people who need to move into FEMA trailors for a year after Hurricane Katrina are low functioning. They are sorted entirely by what they need. I think it would be a good thing if people who need support because of a disability were sorted the same way.
SpongeBobRocksMao
Veteran
Joined: 18 Oct 2008
Age: 31
Gender: Male
Posts: 2,774
Location: SpongeBob's Pineapple (England really!)
25 May 2010, 5:57 pm
I go to several clubs for people with disabilities, so I have met a lot of people with LFA. I do feel sorry for them, as there are a lot of stuff that they can not do, so life for them must be very hard.
_________________
Who lives in a pineapple under the sea?
SpongeBobRocksMao!
Absorbent and yellow and porous is he!
SpongeBobRocksMao!
25 May 2010, 6:19 pm
Callista, I really like the idea of level of functioning as being about needs for support. I like the fact that at the intermittent level it's not different in quantity from what NTs get when they're young, since that emphasizes the continuity that I think really is there. Anbuend, why do you think this is a bad idea?
One difference I've noticed, though, is that NTs are likely to receive the (lower) levels of support mostly when they're young and inexperienced, and in particular sorts of situations that are considered challenging for "everyone" (getting your first apartment or job, applying to college, etc.). We might need the same level of support when we're older, or for different sorts of activities (making a business phone call, working a self checkout?), or for the fifth or tenth time we do something, not just the first. YMMV probably goes double here...
25 May 2010, 7:33 pm
Not think idea terrible. Just not think idea go far enough.
Idea quoted again:
Limited support: Person needs help sometimes, but not always (doesn't need an aide), ex., transportation, shopping; getting a job coach to learn a job, etc.
Intensive support: Person needs help every day, but not with every task (ex., transferring to wheelchair; eating meals; etc.)
Pervasive support: Person needs help every day with every area of daily life.
Problem is it not convey how much support typical nondisabled person get.
Most people get huge amount support for entire life.
Disabled people get tiny amount more support than most people.
So nondisabled people get maybe 200 kind of support (average) and disabled people maybe get 20 more kind of support so 220 average.
That's only 20 support difference.
But by that system person who get 200 kind of support get "no support".
And person who get 220 kind of support get "pervasive support".
Makes no sense.
Makes even less sense because:
Imagine person do 20 things for self most nondisabled cannot do.
But person also need 20 kind of support most people not need.
So person called "pervasive support" even though they get same amount of support as average nondisabled just need different kind.
So two ways makes no sense.
One - ignore amount support most people need (calls it none).
Two - ignore some disabled people not need some support nondisabled people need.
Best system would aware of that idea disabled people need huge more support than nondisabled is nonsense. AND aware some disabled people need support nondisabled people not need and not need some support nondisabled people need.
So Callista idea better than functioning label but not quite what I would want. YMMV.
Sorry again for confusion of typing is have been physical strain lately since surgery 2 week ago plus surgery tomorrow. So had to write this now or might never write it. Even though brain not up for writing.
ETA: ooo found good quote for explain:
I am a dependent person. I eat food whose final preparation I handle myself, but which has come to me across roads laid and maintained by other people from stores staffed by other people -- and even those people didn't grow or raise or harvest or slaughter any of it. I wear clothes made by other people from cloth woven by still others. I am human: I depend on others. And this is called independence.
I am a dependent person. I need human contact, most of which I receive through an Internet built and maintained by many other people. I do not know my neighbors, but even face-to-face interaction requires someone's cooperation. I have learned from my time in isolation rooms that I can handle a while without human interaction, but that eventually it will become unbearable. I am human: I depend on others. And this is called independence.
I am a dependent person. The words I work with were taught to me by people who wrote and read them before I traced my first A. The language I work in is a living entity, shaped and grown over centuries by billions upon billions of speakers. The ideas I work on are part of a tradition nurtured by many thinkers. I am human: I depend on others. And this is called independence.
I am a dependent person. I do not -- have learned that I cannot safely -- live alone. I require the patterns of life to be modeled for me over and over again. I struggle to get, and to keep, jobs in workplaces designed for "plug-and-play" workers. I learn some things quickly and easily; I need to be explicitly taught many things that seem obvious to others. I am human: I depend on others. And this is called dependence.
Independent can mean self-governing. It can also mean self-reliant. It can deny others' influence on our decisions or others' support in carrying those decisions out.
Dependent can mean controlled by others. It can also mean requiring the support of others.
None of us, of course, is independent in either sense. We grow up in social contexts, supported and denied, enabled and disabled by those around us.
But some rely on supports which are so common as to go unnoticed, while others use support that is atypical and therefore apparent. Some supports are provided by the community as a whole and go unnoticed, while others are borne -- or not -- by a small number of people whose lives are profoundly affected.
source: http://www.ragged-edge-mag.com/0501/0501cov.htm
_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
26 May 2010, 9:25 am
Idea quoted again:
Limited support: Person needs help sometimes, but not always (doesn't need an aide), ex., transportation, shopping; getting a job coach to learn a job, etc.
Intensive support: Person needs help every day, but not with every task (ex., transferring to wheelchair; eating meals; etc.)
Pervasive support: Person needs help every day with every area of daily life.
Problem is it not convey how much support typical nondisabled person get.
Most people get huge amount support for entire life.
Disabled people get tiny amount more support than most people.
So nondisabled people get maybe 200 kind of support (average) and disabled people maybe get 20 more kind of support so 220 average.
That's only 20 support difference.
But by that system person who get 200 kind of support get "no support".
And person who get 220 kind of support get "pervasive support".
Makes no sense.
Makes even less sense because:
Imagine person do 20 things for self most nondisabled cannot do.
But person also need 20 kind of support most people not need.
So person called "pervasive support" even though they get same amount of support as average nondisabled just need different kind.
So two ways makes no sense.
One - ignore amount support most people need (calls it none).
Two - ignore some disabled people not need some support nondisabled people need.
Best system would aware of that idea disabled people need huge more support than nondisabled is nonsense. AND aware some disabled people need support nondisabled people not need and not need some support nondisabled people need.
So Callista idea better than functioning label but not quite what I would want. YMMV.
Sorry again for confusion of typing is have been physical strain lately since surgery 2 week ago plus surgery tomorrow. So had to write this now or might never write it. Even though brain not up for writing.
ETA: ooo found good quote for explain:
I am a dependent person. I eat food whose final preparation I handle myself, but which has come to me across roads laid and maintained by other people from stores staffed by other people -- and even those people didn't grow or raise or harvest or slaughter any of it. I wear clothes made by other people from cloth woven by still others. I am human: I depend on others. And this is called independence.
I am a dependent person. I need human contact, most of which I receive through an Internet built and maintained by many other people. I do not know my neighbors, but even face-to-face interaction requires someone's cooperation. I have learned from my time in isolation rooms that I can handle a while without human interaction, but that eventually it will become unbearable. I am human: I depend on others. And this is called independence.
I am a dependent person. The words I work with were taught to me by people who wrote and read them before I traced my first A. The language I work in is a living entity, shaped and grown over centuries by billions upon billions of speakers. The ideas I work on are part of a tradition nurtured by many thinkers. I am human: I depend on others. And this is called independence.
I am a dependent person. I do not -- have learned that I cannot safely -- live alone. I require the patterns of life to be modeled for me over and over again. I struggle to get, and to keep, jobs in workplaces designed for "plug-and-play" workers. I learn some things quickly and easily; I need to be explicitly taught many things that seem obvious to others. I am human: I depend on others. And this is called dependence.
Independent can mean self-governing. It can also mean self-reliant. It can deny others' influence on our decisions or others' support in carrying those decisions out.
Dependent can mean controlled by others. It can also mean requiring the support of others.
None of us, of course, is independent in either sense. We grow up in social contexts, supported and denied, enabled and disabled by those around us.
But some rely on supports which are so common as to go unnoticed, while others use support that is atypical and therefore apparent. Some supports are provided by the community as a whole and go unnoticed, while others are borne -- or not -- by a small number of people whose lives are profoundly affected.
source: http://www.ragged-edge-mag.com/0501/0501cov.htm
Support costs money.
The supports used by everybody are called infrastructure rather than supports but you are right, they are supports. And they cost money. They are funded by taxation and by the general flow of business. However, there is a very significant economy of scale. When people step outside of that economy of scale and need a support that is not broadly used and therefore also not broadly funded, a minor increase in support translates into a major increase in cost.
When people ask, "what level of support does this person need?" they are actually asking "how much is this going to cost beyond what it costs to maintain the social infrastructure per person?" But you are right- they never actually add on"...beyond what it costs to maintain the social infrastructure per person". But calculating out how much it costs to run a social infrastructure per person is not important when considering what supports a particular disabled person needs. The important thing is the differential.
Callista's system focuses on that differential. "Level of support needed" is really "how much will this cost beyond what the system usually spends per person". This is crucial information. Sorting people according to that could lead to greater efficiency of supports. There is never going to be an economy of scale, but the sytem could be less haphazard. As it stands now, the "low/high functioning" labels are useless, stigmatizing and frequently misleading because they don't always lead support providers to correctly infer what supports a person needs. We're all agreed on that. Callista's system removes a layer of misleading information and that can't help but lead to greater efficiency which leads to less haphazard supports. Efficiency is also cost effective. And that is important.
Here's where somebody goes off on me and says, boggled, "are you calling our government efficient?" In many ways, yes, I am. There are a lot of things it could do more efficiently (and therefore less expensively) but the maintenance of a national infrastructure, which truly is a gigantic support system for all, requires and often gets a level of efficiency which we often take for granted and disregard because it is invisibly effective behind all those reprts of government waste.
26 May 2010, 2:22 pm
I think that may be why electronic communication devices are so expensive. When I did research on them, I found prices that were far, far beyond what electronics with a similar level of sophistication sold for to the general public.
It's partly because fewer people need a VOCA than want a laptop; partly because medical equipment isn't connected so directly to the laws of supply and demand; partly because lots of people don't use VOCAs who need them, so there are fewer purchases than the market could theoretically support.
If we wanted to make communication devices cheaper, the trick would probably be to sell them directly to the customers rather than to their insurance companies, and to improve disability rights (especially for children in school) so that more people are trained to use those devices. Then there would be a larger market and more competition, and it would become more mainstream, with the result that the price would go down closer to the price of a similarly-complex (and similarly rugged) laptop. Supply and demand...
People, of course, are not dollar amounts; but knowing the logistics of things can improve services. Right now, it's so different from place to place--one state, you'll sit at home with just the bare minimum to stay alive; in another, you'll get a college education and high-tech equipment. Knowing support levels might help because it would let agencies know how many aides they've got to hire, or how many people they can expect to go into the vocational rehab system, or how many students they'll need to pull out for extra reading or math lessons. If you're going to make sure there's enough to go around, for everybody to get what he needs, you've simply got to define things, not go about it in the haphazard way it's being done now. Now, it seems like the people who get what they need are the people who can shout the loudest, or have other people shout for them, and that's just not fair.
_________________
Reports from a Resident Alien:
http://chaoticidealism.livejournal.com
Autism Memorial:
http://autism-memorial.livejournal.com
26 May 2010, 2:45 pm
Disabled people are about 1/5 of the population by a lot of estimates. Which is a considerable amount of support that could be planned for like others and isn't. In fact integrating support for disabled people into the set of supports that are normally given to everyone, generally costs far less than things like nursing homes (which are more expensive than the equivalent in home care), just as one example. And the amount of people in those is pretty enormous. So I don't think it's just about numbers and money. It's about who has more value in a society, because society generally plans for people it values even when it's expensive or rare.
(And I'm back from surgery which went well and am actually better at typing today than I was last night. I've noticed that after I get home I have this brief period where I think I am doing better than I am and then it all hits later.)
_________________
"In my world it's a place of patterns and feel. In my world it's a haven for what is real. It's my world, nobody can steal it, but people like me, we live in the shadows." -Donna Williams
26 May 2010, 3:22 pm
(And I'm back from surgery which went well and am actually better at typing today than I was last night. I've noticed that after I get home I have this brief period where I think I am doing better than I am and then it all hits later.)
I'm glad to see you back in form. I noticed you were economizing on words so it must have been difficult typing. Glad to see you nimble-fingered again.
Back to your point...
When I was a little kid, I remember seeing a poster with a picture of an empty wheelchair and the slogan "Disabled: the minority group anybody can join". It was a political poster campaigning for sidewalk curb cuts. At the time, sidewalks didn't have curb cuts (yes, I realize that many still don't) and disability groups were advocating for them to be put in. Retrofitting curbs costs money. Their point was, disabled vs. non-disabled isn't really us vs. them since nobody is exempt from potentially joining the ranks of the disabled. In fact, everybody joins the ranks of the disabled if they live long enough.
So on the one hand it isn't entirely about money (although supports and retrofitting curbs costs money). There is an emotional component to it too. People don't want to prioritize disability supports. Technically, this should make no sense. Like the poster said, disabled is a group that anyone can join and the supports Jane Citizen pays for today as an able-bodied person may be the supports she winds up using herself after an accident or illness (or age, if she lives long enough to wind up in a nursing home). I understand your point about it being not valuying disabled people. But I don't think that's the whole of it either. Flat-out self interest should get able-bodied people behind this more since able-bodied can be a fleeting thing. To not value a disabled person is to not value one's potential future self. And maybe that's a big emotional part of it too. People don't want to think that the support system they help establish today could be the very system they are using tomorrow. There is a lot of fear involved.
Things get less scary if they get taken out of a nebulous emotional realm where fears can be projected ("low/high functioning" feeds into those fears) and into the concrete, pragmatic realm of money and "what's the most effective way to do this?". That's one more positve thing about Callista's support level sorting system. It's so pragmatic and unemotional that it can help mediate the fear response which leads people to want to respond with out-of-sight, out-of-mind such as with nursing homes.
Last edited by Janissy on 26 May 2010, 3:44 pm, edited 2 times in total.
26 May 2010, 3:32 pm
Anbuend, I'm glad your surgery went OK and I hope you're feeling better. Sorry you were having so much trouble replying before, and glad you're not now.
I guess I interpreted Callista a little differently. I would assume that most NTs need "intermittent support," just like many "high-functioning" people on the spectrum do. No stigma here, because there's no difference in quantity. As I pointed out, the specific sort of intermittent support, and the situations in which it's needed, could be different, though. To me, looking at it this way makes at least "high-functioning" people on the spectrum not be stigmatized, but I guess it doesn't help change how we look at people who need constant day to day support, which is also a problem.
Wow, 1/5 (20%) of the population? That's a lot! I assume this includes every possible disability (physical, stuff like AS, mental health issues, etc.) at every level of need for support, whether or not people are actually taking advantage of support at the moment?
29 May 2010, 10:23 am
what gets me is - why was everyone so shocked that there is a person inside?
Thanks. Heres another interesting video which proves this
[youtube]http://www.youtube.com/watch?v=JnylM1hI2jc[/youtube]
using the analogy of judging books by their covers, people with profound autism are more like books which can't be opened. It would be unwise to assume theres no pages in the book.
| Similar Topics | |
|---|---|
| Did your Autism get better with age? |
06 Jun 2025, 2:11 pm |
| Having Autism |
26 Apr 2025, 6:00 am |
| undiagnosed autism |
31 Dec 1969, 7:00 pm Guest
|
| My Autism Diagnosis: Then and Now |
29 Apr 2025, 12:29 pm |
