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OJani
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27 Jan 2012, 3:55 am

Having read descriptions of all three levels I still don't get how they apply to the everyday life of autistics, seriously. Highly subjective matter, and it always has been one, imho.

It tells nothing about the milestones (or benchmarks) of social functioning to which autistics could be compared and measured. Some regard having a job, a driver's license and living independently as signs of HF, though I think it's a misconception, puts too much emphasis on the material world. How much help one needs is also not a clear factor, it's hard to determine. Maybe they get help and function quite well (job, independence, own family), maybe they don't even know they are in need for help.

I think we should consider Maslow's hierarchy of needs, a theory in psychology:

Image

The higher someone stands in the pyramid, the higher functioning one is. To what level the society is responsible to help people with impairments to get to? If someone has better abilities ASD aside (i.e. better education, better upbringing, fortunate past, better profession by chance, maybe higher IQ is also an independent factor), one is no longer considered as being in need for help, thus one isn't autistic per the diagnostic criteria?

Or, what should we do if someone is high in the pyramid in one respect, but have skipped (missed out) a level? Often autistics are deprived of having an own family, a spouse, children. It goes down to the very basis of being autistic, in a sense. Should the society stand up and help these autistics just as it helps those who have "more basic" problems with living?

I'm leaned toward it should, but it won't. I feel very disappointed about it.


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27 Jan 2012, 8:04 am

To me, the levels explanation of "support" are great. I think perhaps there are some who are self diagnosed our doubting that part of the reason they do so is we are adults or at the least older teenagers. We've had 15 to 30, to even 50 or 60 years to develop support systems. Many of these support systems are a way of life, they feel normal.

If you break down what it takes for you to get through a day and compare it to the NT world, you can start to pick out the things you utilize for support.

The way I read it, if you function and participate in life, it doesn't exclude you. However if you don't need help and haven't had help to do so then you would be excluded.


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27 Jan 2012, 10:20 am

infinitenull wrote:
If you break down what it takes for you to get through a day and compare it to the NT world, you can start to pick out the things you utilize for support.

The way I read it, if you function and participate in life, it doesn't exclude you. However if you don't need help and haven't had help to do so then you would be excluded.


Hmmm....but it takes longer to do things. Although it may not be a substantial measurable difference. For example, if it takes an NT 3.5 seconds to tie their shoes, it takes me 7 seconds.
(I'm not complaining and I haven't timed myself, just giving an example).

Also, there's the un-measurable brain functions (thinking/analyzing time) and emotional processing...as another example, writing an email may take longer, and not because of typing slower - time to get the thought out clearly and concisely.


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27 Jan 2012, 10:36 am

Phonic wrote:
As previously mentioned, the criteria that requires you to be impaired and disabled isn't new, it's just somewhat ignored by people who self diagnose, and by autistics who simaltaniously say they are not disabled by fear losing their diagnosis with this new criteria.

I look foward to the tidied up profile, it'll help with studies on autism that were previously segregated.


By some people who self-diagnose, but not all.



OJani
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27 Jan 2012, 11:36 am

infinitenull wrote:
To me, the levels explanation of "support" are great. I think perhaps there are some who are self diagnosed our doubting that part of the reason they do so is we are adults or at the least older teenagers. We've had 15 to 30, to even 50 or 60 years to develop support systems. Many of these support systems are a way of life, they feel normal.

If you break down what it takes for you to get through a day and compare it to the NT world, you can start to pick out the things you utilize for support.

The way I read it, if you function and participate in life, it doesn't exclude you. However if you don't need help and haven't had help to do so then you would be excluded.

The question is how it is determined if someone needs help. The person who has an ASD can not always be expected to know, and even if they do, they might not get it when they are considered HFA. They wouldn't help you if your problem is "only" having no family.



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27 Jan 2012, 11:47 am

Verdandi wrote:
Phonic wrote:
As previously mentioned, the criteria that requires you to be impaired and disabled isn't new, it's just somewhat ignored by people who self diagnose, and by autistics who simaltaniously say they are not disabled by fear losing their diagnosis with this new criteria.

I look foward to the tidied up profile, it'll help with studies on autism that were previously segregated.


By some people who self-diagnose, but not all.


Exactly, the only reason I self diagnosed is because I'm impaired in ways AS explains.


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TheSunAlsoRises
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27 Jan 2012, 1:52 pm

Will people have to be re-accessed? Will a diagnosis of Aspergers automatically translate into level 1 on the severity scale because it's considered High Functioning Autism by default ?

Will a diagnosis of Mild autism and PDD-NOS translate into a level 2 on the severity scale ?

Will a diagnosis of Classic to Low functioning Autism automatically translate to a level 3 on the severity scale ?

Do you think there is a systematic plan in place to go through every element of an individuals diagnosis to determine the level of severity?

Can the level of severity change throughout an individuals lifespan ?

Will a developing child be required to get a reassessment at certain age intervals ?

IF so, can a person with an ASD theoretically move off of the severity scale ?

IF a person with an ASD moves off the scale, what will their diagnosis be ?

An Autisitc with a social communication disorder THAT does not have significantly impaired daily function, perhaps ??

Will each level of severity have a specific set of services an insurance company is willing to pay for ?

IF a person needs more services(that insurance companies are not willing to pay for due to their level of severity ) will they have to go out of pocket or simply do without ?

Will the insurance companies provide a list of experts psychologist that a person must choose amongst inorder to qualify for services or can a person choose their own private psychologists?

Will the level of support service for Adults take into consideration their personal living arrangements.......meaning the greater familial support, the less likely a person will qualify for outside services ?

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27 Jan 2012, 2:30 pm

This severity scale leaves me feeling more hopeless than ever. I still don't understand what qualifies as "needing support".

I have managed to keep a job, and function at a minimal level, but I am still somewhat dependent on family. When my parents are gone, I won't have anyone. I will be totally alone. This has been weighing on my mind more and more in the last few years.

I am not good with practical things. Sometimes I need to have something explained to me, or have someone go with me to sign papers and that sort of thing. I am intelligent but sometimes I just don't have good sense about things.

All my life, when I've asked for help with things, people have told me I don't need any help. So I've to just function on my own as well as I could, and hide all the gaps. I thought in time, I would catch up and be...I don't know...be more adult? Now I'm 33 and my life is nothing like I thought it might be.



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27 Jan 2012, 3:53 pm

OJani wrote:

I think we should consider Maslow's hierarchy of needs, a theory in psychology:

Image

The higher someone stands in the pyramid, the higher functioning one is. To what level the society is responsible to help people with impairments to get to? If someone has better abilities ASD aside (i.e. better education, better upbringing, fortunate past, better profession by chance, maybe higher IQ is also an independent factor), one is no longer considered as being in need for help, thus one isn't autistic per the diagnostic criteria?


Or, what should we do if someone is high in the pyramid in one respect, but have skipped (missed out) a level? Often autistics are deprived of having an own family, a spouse, children. It goes down to the very basis of being autistic, in a sense. Should the society stand up and help these autistics just as it helps those who have "more basic" problems with living?


The hierarchy doesn't actually work in terms of how high functioning someone is. It's not a list of an accomplishments, its a list of priorities. (Not only are the priorities, they are priorities built for NTs, so aren't always accurate).

It's also a list of levels of abstractions and someone's ability to think abstractly. However, someone thinking abstractly, doesn't mean that they can feed themselves.

Both NT and autistic, there are people who fill all the requirements of level 5, while being malnourished. What this says isn't that they're at level 5, it says that the priority with this person is to feed them.

Everyone will be all over the board on these, autistic people even more than NTs.

It also won't be very descriptive at what level people are at if you go to what is the first level they need help at because of so many of us being at level 1 or 2 - either needing help with basic physical needs (like feeding ourselves), or finding and keeping a job, even if we otherwise look very high functioning.

As for the severity scale, I question what the differences in levels actually end up meaning when it comes to people who are at those different levels. I think if there were more options (and preferably more parts of being autistic) it'd be more useful.



OJani
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27 Jan 2012, 5:48 pm

Tuttle wrote:
The hierarchy doesn't actually work in terms of how high functioning someone is. It's not a list of an accomplishments, its a list of priorities. (Not only are the priorities, they are priorities built for NTs, so aren't always accurate).

Perhaps, it has to do more with quality of life than functioning levels in the casual sense.

Tuttle wrote:
Everyone will be all over the board on these, autistic people even more than NTs.

To some degree, strengths at a higher level can compensate for weaknesses at a lower one, but as a general rule, accomplishment at a high level can't go without the lower ones omitted / not dealt with.



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27 Jan 2012, 5:59 pm

I admit, I don't quite "get" the severity scale.

I've been working and on my own since age 22. I don't need "help" getting dressed, paying bills, or cleaning myself. I can drive and hold a job. One of the reasons I'm so "independent" is because I cannot handle living with other people. Living with others disrupts my routine and causes intolerable levels of stress.

It doesn't matter if it's a choice between living with others and being on the street; I still cannot live with others. Also, I typically do not ask for "help" regardless of whatever situation I'm in, typically because 1.) I don't know how, and 2.) it never occurs to me.

My mother has multiple sclerosis. She is disabled. But she can and does work, and she does not need "help" with the daily task of living (yet). However, she is STILL disabled.

People seem to have a very narrow and stunted view of what constitutes a "disability." It strikes me as odd that we should only give an autism diagnosis to people who meet an arbitrary set of criteria for "disability" as opposed to diagnosing autism first and THEN assessing an individual's level of ability and giving "help" as required.


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Last edited by XFilesGeek on 27 Jan 2012, 6:14 pm, edited 1 time in total.

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27 Jan 2012, 6:07 pm

btbnnyr wrote:
As always, the criteria and the severity scale are both geared towards children. For diagnosing autism in children, they are adequate and appropriate as written. For diagnosing autism in adults, they are adequate and appropriate only as long as the clinician does not expect the adult to behave eggsacly like the child whom the adult used to be did, but instead, compares the adult to NT peers in terms of social, occupational, educational functioning and supports required.
Yes, exactly. I hope that there will be a note about autism in adults included in the final draft, because otherwise we'll have the same old problem we're dealing with now--an autistic adult doesn't look like an autistic child, so the psychologists are often left clueless.

It's possible and not uncommon that an autistic child who will be highly independent as an adult will have a similar skill set to an autistic adult who was severely impaired as a child. You can't put them both in the same category; otherwise you assume that the child is more impaired than she actually is, and the adult less than he actually is. You have to compare them to the expectations that society has of them currently. A six-year-old child who cannot keep himself clean may be at a similar disadvantage as a thirty-year-old adult who cannot manage his bank accounts--even though not being able to manage bank accounts is totally normal for a six year old (and in fact, if the six-year-old could do it, he'd be thought precocious).

Sometimes I just want to hammer it into the heads of psychology in general: Autistic people learn. :x


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27 Jan 2012, 6:17 pm

Callista wrote:
btbnnyr wrote:
As always, the criteria and the severity scale are both geared towards children. For diagnosing autism in children, they are adequate and appropriate as written. For diagnosing autism in adults, they are adequate and appropriate only as long as the clinician does not expect the adult to behave eggsacly like the child whom the adult used to be did, but instead, compares the adult to NT peers in terms of social, occupational, educational functioning and supports required.
Yes, exactly. I hope that there will be a note about autism in adults included in the final draft, because otherwise we'll have the same old problem we're dealing with now--an autistic adult doesn't look like an autistic child, so the psychologists are often left clueless.

It's possible and not uncommon that an autistic child who will be highly independent as an adult will have a similar skill set to an autistic adult who was severely impaired as a child. You can't put them both in the same category; otherwise you assume that the child is more impaired than she actually is, and the adult less than he actually is. You have to compare them to the expectations that society has of them currently. A six-year-old child who cannot keep himself clean may be at a similar disadvantage as a thirty-year-old adult who cannot manage his bank accounts--even though not being able to manage bank accounts is totally normal for a six year old (and in fact, if the six-year-old could do it, he'd be thought precocious).

Sometimes I just want to hammer it into the heads of psychology in general: Autistic people learn. :x


In the Rationale section of the DSM-V criteria, there was one mention that clinical descriptions would be included for different chronological ages, so I am hoping that one of those chronological ages is ADULT.

When I was being diagnosed, the psych did not have any particular bias about what an autistic person can or cannot do, but did ask me in what areas I needed accommodation. That was the biggest motive of the diagnosis - identifying what accommodations I needed to up my level of functioning, particularly occupational and educational, to the level of my NT peers. I said that I needed a flexible work schedule to avoid sensory overload on an hourly basis.

This is the kind of "impairment in functioning" that psychs are looking for, not "autistic people can't drive if you can drive you aren't autistic". If any psych says that, then they suck and are diagnosable with suckage. I am happy to accommodate them with a correction at length in sub-atomic detail.



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27 Jan 2012, 9:45 pm

This makes it quite clear to me. For social I fit Level 1. For interests and rituals I fit Level 2. I would like to say that I usually really have to push myself socially. When I push myself, I am usually looking toward/thinking about interests to get me through.


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