Can I be low functioning and people not reakize

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kraftiekortie
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17 Jun 2019, 8:39 am

Ezra's a really a wizened old man now.



kraftiekortie
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17 Jun 2019, 8:42 am

As far as "poor aptitude"----that's a no-brainer. Not many people have "poor aptitude" at all. Aptitude means potential only.

I might use the label "functional challenges" for those people who, according to society, are not functioning too well. It's only "poor functioning," to me, if the person really isn't making an effort at all.



Benjamin the Donkey
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17 Jun 2019, 8:50 am

I'm supposedly high-functioning but I have some really major deficits, as well as major strengths. I'm totally unfit for most jobs, including just about anything in an office. But I work and pay my bills--when I remember. Last year, I didn't pay the electricity bill for a year and then had a huge accumulated bill to pay. I can focus for hours on work I love, even forgetting to eat, but I can get incredibly frustrated or confused filling out a relatively simple form. Loud noises and bright lights are like kryptonite for me. I often unintentionally offend people. I can be extremely articulate but am often unable to communicate effectively. The point is, it's not a simple scale but a cluster of traits, and assigning a level is more subjectime than the psychiatric profession would like us to think.


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Last edited by Benjamin the Donkey on 17 Jun 2019, 8:55 am, edited 2 times in total.

vermontsavant
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17 Jun 2019, 8:52 am

did you have a severe delay in speech? if you were low functioning you would have.you may not have learned to speak untill maybe 8 or 10 years old.low functioning autism is associated with severe difficulties in speech.

however aspergers and high functioning autism can be a spectrum in and of itself,some aspies are more disabled than others.you may be one of those more disabled aspies


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EzraS
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17 Jun 2019, 9:06 am

skibum wrote:
I am just curious Ezra. There have been times in the past when your avatars have reflected your actual physical appearance. I noticed your new avatar. Have you grown your hair long and grown a beard?


Yes. But my avatar is actually one of my video game characters I created (which was just making preset selections, no actual computer design skills). I was going to cycle through them all as avatars.

As far as my hair and beard goes, this is close to it:

Image



skibum
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17 Jun 2019, 9:08 am

kraftiekortie wrote:
Ezra's a really a wizened old man now.
He has always been. You are an old soul Ezra :heart:


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17 Jun 2019, 9:09 am

EzraS wrote:
skibum wrote:
I am just curious Ezra. There have been times in the past when your avatars have reflected your actual physical appearance. I noticed your new avatar. Have you grown your hair long and grown a beard?


Yes. But my avatar is actually one of my video game characters I created (which was just making preset selections, no actual computer design skills). I was going to cycle through them all as avatars.

As far as my hair and beard goes, this is close to it:

Image
Well I think you must be very very handsome!


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skibum
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17 Jun 2019, 9:10 am

This is a great conversation. I hope it keeps going. I have an appointment I have to go to now but I will check in later.


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asalem
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17 Jun 2019, 2:54 pm

skibum wrote:
EzraS wrote:
skibum wrote:
EzraS wrote:
You could have a neurological speech problem such as apraxia of speech. Often when one "talks funny" they get treated as someone someone who is mentally challenged.

Low functioning autism would severely impact all aspects of your life. You would need assistance with most all simple daily activities. And most low functioning autistics are unable to talk at all.

That is what confused me so much about getting a GARS level 3 on my testing. I think there needs to be a new label made for people like me. I am considered "very high functioning" but I need a very substantial level of support and I need it a lot. It's just not the same kind of support that someone like you would need but it is definitely substantial support. I wonder if there is a way to create a label that fits people like me.

The reason that I think this is important is because if I don't get the support I need I can't really survive but because I am so "high functioning' people don't believe that I need the support that I need so it is almost impossible to get it. And I pay a very high price when I am not able to get it. I was actually in the hospital four times just in the past three weeks because the support I needed was not understood and I was not able to receive it.


That is a conundrum.


Yes, it is very difficult. And this is a common problem. Star Trekker and I have these conversations all the time because she experiences this also as do other high functioning Autistics that that I know in real life. See, the difference between someone like me and someone like you Ezra is that your condition and your levels of functioning stay pretty constant. They don't really fluctuate dramatically. But for me and like Star Trekker for example, depending on whatever our brains have to process at any given moment, whether it be from sensory stimuli or emotional stimuli or a varying number of other things, we can go from so high functioning that we could be rocket scientists to no functionality at all where we are basically like vegetables. And that can fluctuate so much and so often and we never know how long a level of functioning will last. Like for example, it could change in a couple of minutes from very high to very low or either the high or the low could last for hours or days or one part of me could be functioning at a very high level at the exact same time that a part of me is functioning at a very low level or not functioning at all. Our brains as so susceptible to whatever stimuli they have to process that they can shut either all of down or parts of us down at any given moment.

But when your functionality levels bounce around like ball in a pinball machine, or like in handball or racquetball, people tell you that the only way that could be possible is if you are faking. The most direct bullying I experience is by the ER staff at hospitals because they are convinced that they know everything about Autism. But they really believe that people are either low functioning or high functioning and that you cannot go from one extreme to the other especially in a very short amount of time. So anytime I lose functioning I am bullied and threatened and accused of faking. But when I lose functioning, which happens all the time, and much more so and much more dramatically as I am getting older and now having to deal with the neurological damage of that kind of accumulative bullying, the more it happens, the more I get bullied for it happening. And the more it happens, the more I am labelled a faker and a malingerer and the more that happens, I am denied less and less help. I am now afraid of going into an emergency room for any reason at all now because I immediately get mistreated from being misunderstood when I go.


Wow, I read one of the best things in life. I am glad I am not the only one alone. I have the same EXACT thing. I feel like one time I can be normal and other times I am just completely dysfunctional. This whole fluctuation thing isn't happening much anymore as I feel like I am completely dysfunctional every time now. I think I've lost some much needed strength in my arsenal. I have been trying to revive some of those times I could function a little normal but it's not happening. I think my autism is getting worst.

I feel for you in that people have no sympathy at all when you need it. I don't want peoples sympathy but it does help to have people understand in times of weakness. People are heartless I guess.



asalem
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17 Jun 2019, 3:02 pm

vermontsavant wrote:
did you have a severe delay in speech? if you were low functioning you would have.you may not have learned to speak untill maybe 8 or 10 years old.low functioning autism is associated with severe difficulties in speech.

however aspergers and high functioning autism can be a spectrum in and of itself,some aspies are more disabled than others.you may be one of those more disabled aspies


If it helps to understand me better, I know I have some symptoms of adhd, misophonia, trichotillomania (one side of my beard is uneven due to plucking it out), and very severe social anxiety, constant panic attacks, and who knows what else. I am know I am not normal in regards to most people. I do things that I know other people would consider strange. I am constantly stemming and feeling on my eyelashes. It satisfies me to just put brush my fingers along it. I can't explain why.

Yes, I had a more severe form of stuttering. It's has become better and is not bad right now. I certainly feel low functioning. I have no family support in this so thats why on on wrongplanet.



asalem
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17 Jun 2019, 3:05 pm

Benjamin the Donkey wrote:
I'm supposedly high-functioning but I have some really major deficits, as well as major strengths. I'm totally unfit for most jobs, including just about anything in an office. But I work and pay my bills--when I remember. Last year, I didn't pay the electricity bill for a year and then had a huge accumulated bill to pay. I can focus for hours on work I love, even forgetting to eat, but I can get incredibly frustrated or confused filling out a relatively simple form. Loud noises and bright lights are like kryptonite for me. I often unintentionally offend people. I can be extremely articulate but am often unable to communicate effectively. The point is, it's not a simple scale but a cluster of traits, and assigning a level is more subjectime than the psychiatric profession would like us to think.


Very well explained. Thank you. I feel the same way. I just feel that as my autism is getting worst that people are starting to realize in their treatment of me. I am not longer treated somewhat serious. I am treated like I am disabled at work by some people. This is really bothering me.



asalem
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17 Jun 2019, 3:08 pm

kraftiekortie wrote:
What makes you feel you're "low-functioning," OP?

A person who is not actually "low-functioning" could FEEL like he/she is "low-functioning" very easily. So this question is not a criticism.

A person with a high IQ, say, and yet who cannot cook his/her own dinner and has to depend upon others for so many things, could FEEL low-functioning.

It can be safely assumed that a person who is not toilet-trained, is constantly screaming, and who is constantly self-injurious, is "low-functioning."


I think I just feel like low functioning because I am close to the lower end than the higher end, although I am not on the lowest end of the spectrum. Thats probably where I am at. It might not be safe to assume I am low functioning but I feel like I am close to their, and JUST enough to get by without having to be supervised.



firemonkey
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17 Jun 2019, 3:30 pm

According to the vast majority of people I know, mental health professionals and non mental health professionals, I'm very intelligent. I have little common sense though, and struggle with practical tasks.

If based on ASD symptoms I'd most probably fall into level 1. However I get a fair amount of support living here that I didn't get at my previous place. At my last place it could be said I was self neglecting.

Without that support I'd probably need supported housing . Indeed my care plan says I need the help to allow me to continue living independently in my flat .

How this makes me low, medium or high functioning is hard to say .



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17 Jun 2019, 7:12 pm

asalem wrote:
skibum wrote:
EzraS wrote:
skibum wrote:
EzraS wrote:
You could have a neurological speech problem such as apraxia of speech. Often when one "talks funny" they get treated as someone someone who is mentally challenged.

Low functioning autism would severely impact all aspects of your life. You would need assistance with most all simple daily activities. And most low functioning autistics are unable to talk at all.

That is what confused me so much about getting a GARS level 3 on my testing. I think there needs to be a new label made for people like me. I am considered "very high functioning" but I need a very substantial level of support and I need it a lot. It's just not the same kind of support that someone like you would need but it is definitely substantial support. I wonder if there is a way to create a label that fits people like me.

The reason that I think this is important is because if I don't get the support I need I can't really survive but because I am so "high functioning' people don't believe that I need the support that I need so it is almost impossible to get it. And I pay a very high price when I am not able to get it. I was actually in the hospital four times just in the past three weeks because the support I needed was not understood and I was not able to receive it.


That is a conundrum.


Yes, it is very difficult. And this is a common problem. Star Trekker and I have these conversations all the time because she experiences this also as do other high functioning Autistics that that I know in real life. See, the difference between someone like me and someone like you Ezra is that your condition and your levels of functioning stay pretty constant. They don't really fluctuate dramatically. But for me and like Star Trekker for example, depending on whatever our brains have to process at any given moment, whether it be from sensory stimuli or emotional stimuli or a varying number of other things, we can go from so high functioning that we could be rocket scientists to no functionality at all where we are basically like vegetables. And that can fluctuate so much and so often and we never know how long a level of functioning will last. Like for example, it could change in a couple of minutes from very high to very low or either the high or the low could last for hours or days or one part of me could be functioning at a very high level at the exact same time that a part of me is functioning at a very low level or not functioning at all. Our brains as so susceptible to whatever stimuli they have to process that they can shut either all of down or parts of us down at any given moment.

But when your functionality levels bounce around like ball in a pinball machine, or like in handball or racquetball, people tell you that the only way that could be possible is if you are faking. The most direct bullying I experience is by the ER staff at hospitals because they are convinced that they know everything about Autism. But they really believe that people are either low functioning or high functioning and that you cannot go from one extreme to the other especially in a very short amount of time. So anytime I lose functioning I am bullied and threatened and accused of faking. But when I lose functioning, which happens all the time, and much more so and much more dramatically as I am getting older and now having to deal with the neurological damage of that kind of accumulative bullying, the more it happens, the more I get bullied for it happening. And the more it happens, the more I am labelled a faker and a malingerer and the more that happens, I am denied less and less help. I am now afraid of going into an emergency room for any reason at all now because I immediately get mistreated from being misunderstood when I go.


Wow, I read one of the best things in life. I am glad I am not the only one alone. I have the same EXACT thing. I feel like one time I can be normal and other times I am just completely dysfunctional. This whole fluctuation thing isn't happening much anymore as I feel like I am completely dysfunctional every time now. I think I've lost some much needed strength in my arsenal. I have been trying to revive some of those times I could function a little normal but it's not happening. I think my autism is getting worst.

I feel for you in that people have no sympathy at all when you need it. I don't want peoples sympathy but it does help to have people understand in times of weakness. People are heartless I guess.

I am so glad that we can relate to each other. You are definitely not alone. I know several Autistics who are like us. I also feel like with the accumulation of traumas, I am getting more fragile and more vulnerable and have less stamina in every area. I think there are so many of us in this situation and this is side of Autism that very few people consider. I know that there are no hospital protocols or crisis protocols at all for people like us, at least not where I live in the US. I am trying to educate police, first responders and hospitals about our special needs but it is a difficult task. I will put some more threads up to get some feedback from all of you about some topics that I am trying to teach to these people. One of the problems is that in order for them to listen they want what I teach to be relevant to a lot of people. That is why I ask you guys to provide feedback on some of my threads. If it's just me and my story, they won't listen and we will continue to be misunderstood and abused. But if I can show that these things happen to so many of us, they will listen and allow me to educate them. But take courage friend, you are definitely not alone.


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17 Jun 2019, 7:13 pm

asalem wrote:
vermontsavant wrote:
did you have a severe delay in speech? if you were low functioning you would have.you may not have learned to speak untill maybe 8 or 10 years old.low functioning autism is associated with severe difficulties in speech.

however aspergers and high functioning autism can be a spectrum in and of itself,some aspies are more disabled than others.you may be one of those more disabled aspies


If it helps to understand me better, I know I have some symptoms of adhd, misophonia, trichotillomania (one side of my beard is uneven due to plucking it out), and very severe social anxiety, constant panic attacks, and who knows what else. I am know I am not normal in regards to most people. I do things that I know other people would consider strange. I am constantly stemming and feeling on my eyelashes. It satisfies me to just put brush my fingers along it. I can't explain why.

Yes, I had a more severe form of stuttering. It's has become better and is not bad right now. I certainly feel low functioning. I have no family support in this so thats why on on wrongplanet.
I also have Misophonia. I have had it since I was ten. I also stim with my eyes but on my eyebrows instead of my eyelashes. I love how it feels to rub my eyebrows, it is very soothing. I also stutter sometimes. I am letting you know this because I don't want you to feel insecure about doing these things. They are pretty typical Autistic things to do. :)


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17 Jun 2019, 7:30 pm

kraftiekortie wrote:
What makes you feel you're "low-functioning," OP?

A person who is not actually "low-functioning" could FEEL like he/she is "low-functioning" very easily. So this question is not a criticism.

A person with a high IQ, say, and yet who cannot cook his/her own dinner and has to depend upon others for so many things, could FEEL low-functioning.

It can be safely assumed that a person who is not toilet-trained, is constantly screaming, and who is constantly self-injurious, is "low-functioning."


This is why we have to have very clear definitions of what these terms mean. For example, those of you who have been around here long enough to remember Kingdom of Rats, she was low functioning by all obvious measures. She was an adult who was not toilet trained, in a wheelchair, non verbal, could not relate to people, could not bond with people at all, needed assistance with all ADLs, lived in a home, had no chance to ever live independently, but was one of the most intelligent and remarkable and gifted people I have ever met. She consistently had some of the most insightful posts that I have ever read and she trained therapy chickens.

Ezra, you are another one. I have known Ezra here since he was 12 and he is one of the most intelligent and thoughtful young men I know yet he is considered low functioning. With the right support, Ezra can achieve greatness in his life in so many areas.

So we have to really define what Low Functioning and High Functioning actually mean. If we are going to use those terms, we need consistent definitions for them. We also need a term for those of us who have dramatically fluctuating functioning levels. I can function like a 52 year old one moment, which is my chronological age, and literally in the next moment be functioning as a four year old which is my emotional age or as a 10 or twelve year old which is my practical intelligence age or as a mid teen which is another functioning age level I have sometimes or any combination of all of those. So it is important that we understand how all of this works and find terminology to identify people correctly so that protocols can be established that can meet the needs of everyone on the Spectrum.


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