Can I be low functioning and people not reakize

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asalem
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16 Jun 2019, 6:22 pm

As the question goes



Nydcat
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16 Jun 2019, 6:32 pm

It's more likely that they notice you have something but don't realise what you have.



asalem
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16 Jun 2019, 6:43 pm

Nydcat wrote:
It's more likely that they notice you have something but don't realise what you have.


I am undiagnosed. I feel like I am have a lower funtion than most aspies I have meet. Everytime I meet people they treat me different than other people as if they know something is off about me but that still respect me. At least some people do. I have had people treat me like I am slow or disabled. But when I watch videos of aspies they talk smoother than me. I clutter when I talk and have a little minor stutter. I wonder if I am not high functioning but lower function



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16 Jun 2019, 7:43 pm

I think it just depends on what your definition of "low functioning" is. From what I know, the clinical definition is supposed to mean that your tested IQ is less than 70. If that is the definition that you are going by, then that is an easy one to determine. If your tested IQ fits the range, than there is your answer. But if your definition of low or high functioning is not based on IQ, it can be a little harder to figure it out. I am an excellent example of a person who is harder to figure out. I drive, I live alone in my own home, pay my own bills, do groceries, prepare food, self care and all that, and I have a part time job. I can only work part time, any more than a few hours a week is overwhelming to me and I can't do it. I can also only work very specific types of jobs because I have huge challenges in many areas. I also vary in my functioning levels depending on what my brain is processing. Sometimes I can pass for a very advanced nt but other times I cannot function at all and can't even manage basic needs like ADLs. I also speak very fluently sometimes and more than one language but that is really only sometimes. Other times my speech and comprehension deteriorate so much that I cannot speak intelligibly at all and sometimes I am completely nonverbal. I am also excessively sound sensitive to the point of sometimes going into shock. I am also touch sensitive, texture sensitive, movement sensitive, and light sensitive. I also suffer pretty badly from social overload, executive function overload, and sensory overload as well as speech overload. Sometimes I can be so "high functioning" that I could rule the world. Other times I cannot even do basic things like eat or brush my teeth or go to the bathroom without help and prompting from my brother. I can write books at times and at other times I cannot even recognize letters, words, and numbers on a page. I can analyze profound complex ideas and hold my own with great minds sometimes and other times I have to read books like Good Night Moon and Winnie The Pooh because that is the level at which my brain is functioning. I can't even read them myself, they have to be read to me.

When I got my diagnosis, one of the many tests that they did was the GARS. That is one part of the test which is exclusive to Autism. It is used as one of the tools to measure Autism severity. The severity levels are 1,2, and 3. Level 1 means you need very little support and level three means you need substantial support. The interesting thing is that I am one of those Autistic people or Aspies, if you like that word, who on the surface appears to everyone to be a level 1 because I can be so "high functioning," but in actuality, I scored as a level 3 on the GARS. I did not cheat, it is not possible to cheat that test and I have no reason to cheat that test. I was just as surprised as anyone to find out that I am actually a level 3, and therefore, in that sense, "low functioning." I have no problem whatsoever with being a level 3 because there is no value judgment, it is just an indicator of what kind of support you might need. But not understanding, because I am so "high functioning," I recently asked my diagnostician, who also is my neuropsychologist and has been seeing me regularly since he diagnosed me four and a half years ago, why I am a level three since clearly I can do things that make people assume that I am a level 1. And the answer was that because I cannot do level one things consistently and I drop in functionality level so dramatically and so often in the areas that I do, I need the substantial amount of support that a level three person needs.

Now support can look different depending on each person. I don't need a person living with me 24/7 but I do need to be able to have access to someone who can be available to help me 24/7. If I don't have that, I probably will not survive. So that is what makes me a level three Autistic.

So yes, you can be much more severe than you realize. In fact, several people here on WP have said that when they got officially diagnosed, they realized that in fact, they were more severe than they had realized. So back to your original question, there is really no clear cut answer, it just depends on how you define "low functioning."


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EzraS
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17 Jun 2019, 1:30 am

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.



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17 Jun 2019, 7:21 am

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.

They say that Autistics have very black and white thinking and that may be true but nts do too sometimes. they also accuse of not having theory of mind but they don't realize that they don't have it either. The support that is provided for us has to be exactly what they think it should be and if the support you need is not exactly what they think it should be, you get nothing. So if the only support they want to offer only fits one definition of what loss of function is, than the rest of us cannot get any support when we lose function. That is a huge problem and we pay a very heavy price for that.

I think it is great that "low functioning" people get the support they need and I want them to always have it. But I think they need to realize that "high functioning" people need supports as well in areas that the are not even considering because when we ask for help in these areas we often either just get denied it and left to fend for ourselves or we get bullied for asking like I was this past week. It got so bad that I was in the emergency room at the hospital and became catatonic. But because no one would believe that high functioning person like me could be so affected by Autism. rather than them helping me, they threatened to have me arrested and put in jail for refusing to talk to them and for refusing to leave the premises because they had just discharged me. I was literally completely catatonic and they were about to call the police and have me arrested for trespassing because I was "refusing to talk and refusing to move."


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Last edited by skibum on 17 Jun 2019, 7:33 am, edited 3 times in total.

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17 Jun 2019, 7:29 am

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.



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17 Jun 2019, 7:41 am

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."



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17 Jun 2019, 7:54 am

I think what the OP is saying is that on the aspie level he feels low functioning. And that certainly does exist. There are even low functioning NTs in that regard. Those who flunk out of school, can't hold a job etc.



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17 Jun 2019, 7:59 am

That's a different kind of "low-functioning." This is "low-functioning" compared to other "high-functioning" people, rather than "low-functioning," per se. Many times, this is worse for the person than a true state of "low-functioning." And, perhaps, even more debilitating.

A person who is truly "low-functioning," within the context of autism, most likely would not bemoan the fact that he/she is "low-functioning." They're too busy trying to survive.

There are some who are seemingly "low-functioning"--but who have more cognitive power than they seem to have at first glance. This is another tragic state.

It's a terrible paradox, really.



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17 Jun 2019, 8:07 am

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.


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17 Jun 2019, 8:16 am

kraftiekortie wrote:
That's a different kind of "low-functioning." This is "low-functioning" compared to other "high-functioning" people, rather than "low-functioning," per se. Many times, this is worse for the person than a true state of "low-functioning." And, perhaps, even more debilitating.

A person who is truly "low-functioning," within the context of autism, most likely would not bemoan the fact that he/she is "low-functioning." They're too busy trying to survive.

There are some who are seemingly "low-functioning"--but who have more cognitive power than they seem to have at first glance. This is another tragic state.

It's a terrible paradox, really.


It gets confusing when it comes to terms. Perhaps poorly functioning or poor aptitude would be more appropriate a term since low functioning tends to mean very severe autism.



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17 Jun 2019, 8:20 am

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.


Thank you for explaining that. It's something I was not really aware of. Yeah my functioning is pretty consistent. I have days where I function better or worse but it still stays within the ballpark so to speak.



Last edited by EzraS on 17 Jun 2019, 8:58 am, edited 1 time in total.

skibum
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17 Jun 2019, 8:27 am

EzraS 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.


Thank you for explaining that. It's something I waa not really aware of. Yeah my functioning is pretty consistent. I have days where I function better or worse but it still says within the ballpark so to speak.

And I thank you for always being so supportive as well. I love that about you. And I consider you a good friend. I think it is so important that new terms be created to expand the definitions so that all aspects of being on the Spectrum can be understood and that everyone of us can receive the types of support that we need.


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17 Jun 2019, 8:36 am

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?


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17 Jun 2019, 8:39 am

Ezra's a really a wizened old man now.