How would you tell what % of autism a person has?

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magz
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24 Nov 2019, 12:40 pm

skibum wrote:
BAP people are not Autistic. They have a few strong traits but not enough and not severely enough to actually be Autistic. Like a pre-diabetic and a diabetic. Two very different things with similar components. Unlike with diabetes, a BAP person will not become Autistic over time. But like with diabetes, a pre-diabetic has some components of diabetes but not full blown enough to be an actual diabetic.

In my case the "expectations exceeding capabilities" moment came in my thirties, with very severe burnout...


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24 Nov 2019, 1:07 pm

magz wrote:
skibum wrote:
BAP people are not Autistic. They have a few strong traits but not enough and not severely enough to actually be Autistic. Like a pre-diabetic and a diabetic. Two very different things with similar components. Unlike with diabetes, a BAP person will not become Autistic over time. But like with diabetes, a pre-diabetic has some components of diabetes but not full blown enough to be an actual diabetic.

In my case the "expectations exceeding capabilities" moment came in my thirties, with very severe burnout...
My first super severe could have died from it expectations exceed capabilities massive burnout came a few years ago when I was 49. I know exactly what that feels like. I had lived for decades or a verge of that type of burnout but now knowing that I was Autistic at the time, I had no idea what my problem was or that it was a problem even though it was extremely problematic. I just assumed it was normal and that everyone felt like I did. But I later found out that I was wrong.


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magz
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24 Nov 2019, 1:17 pm

skibum wrote:
I just assumed it was normal and that everyone felt like I did. But I later found out that I was wrong.

Same here.
The term "sensory overload" opened a whole new world of understanding to me.


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24 Nov 2019, 1:21 pm

magz wrote:
skibum wrote:
I just assumed it was normal and that everyone felt like I did. But I later found out that I was wrong.

Same here.
The term "sensory overload" opened a whole new world of understanding to me.
OMGosh, me too!! And then finding out that there are so many different types of overload that I am responding to as well as sensory overload, was mind blowing and life changing in my understanding of myself and my limitations. But learning and understanding all of this was so critical because I am now learning to survive by understanding and respecting my limitations and by demanding that others respect them as well.


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magz
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24 Nov 2019, 2:36 pm

skibum wrote:
magz wrote:
skibum wrote:
I just assumed it was normal and that everyone felt like I did. But I later found out that I was wrong.

Same here.
The term "sensory overload" opened a whole new world of understanding to me.
OMGosh, me too!! And then finding out that there are so many different types of overload that I am responding to as well as sensory overload, was mind blowing and life changing in my understanding of myself and my limitations. But learning and understanding all of this was so critical because I am now learning to survive by understanding and respecting my limitations and by demanding that others respect them as well.

The very same.
Also, since my therapist identified my AS, I have been learning to recognize my real needs and adress them.
There is progress, I used to live in depression for months, sometimes years - now I can climb out of it in about a week. The next goal is to avoid getting into it in the first place.


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skibum
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24 Nov 2019, 3:24 pm

magz wrote:
skibum wrote:
magz wrote:
skibum wrote:
I just assumed it was normal and that everyone felt like I did. But I later found out that I was wrong.

Same here.
The term "sensory overload" opened a whole new world of understanding to me.
OMGosh, me too!! And then finding out that there are so many different types of overload that I am responding to as well as sensory overload, was mind blowing and life changing in my understanding of myself and my limitations. But learning and understanding all of this was so critical because I am now learning to survive by understanding and respecting my limitations and by demanding that others respect them as well.

The very same.
Also, since my therapist identified my AS, I have been learning to recognize my real needs and adress them.
There is progress, I used to live in depression for months, sometimes years - now I can climb out of it in about a week. The next goal is to avoid getting into it in the first place.
That is fantastic.
As I get older, I am getting neurologically weaker and much more vulnerable and fragile because of the affects of Autism. I have seen in a lot of footage and in some studies that our average life span is mid fifties which is what I am approaching. I am beginning to understand why our life spans are so short. So now, more than ever, it is so important for me to respect who and what I am and to actively advocate for the rights and supports of people like me. It literally becomes a matter of if we stay alive or not in cases like mine.


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24 Nov 2019, 5:18 pm

I'm 62. It sounds like I'm living on borrowed time . I'm wondering what affects shorten the lifespan .

I also have schizoaffective disorder which should further shorten the lifespan.



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24 Nov 2019, 7:39 pm

firemonkey wrote:
I'm 62. It sounds like I'm living on borrowed time . I'm wondering what affects shorten the lifespan .

I also have schizoaffective disorder which should further shorten the lifespan.

Having made it to 62, you can probably expect to live a full typical lifespan.

Autistic life expectancies are short for three main reasons:

- higher rates of depression and associated suicides, particularly in young adulthood
- restricted and unhealthy diets
- childhood accidents and filicides (being murdered by your parents)

Make it to adulthood and you’ve got past one of those factors. Make it to 40 and your chance of committing suicide drops. Eat a balanced diet and you’re effectively an NT.

Oh, just remembered higher rates of epileptic attacks. The solution there is of course to it have epilepsy. That’s even more flippant than it sounds because it often comes on later in life. I don’t think research has been done on whether elderly autistics are more likely than elderly NTs to develop epilepsy.



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24 Nov 2019, 8:16 pm

I believe Lorna Wing chose the word "spectrum" to make it clear it's not a continuum. Asperger's Syndrome, for example, has important differences but is considered part of the spectrum. The DSM-5 only assigns levels for level of support needed. Trying the determine the level of autism is probably not practical or useful. As I found, taking different quizzes online, the results are all over the place, but still put me on the spectrum.


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24 Nov 2019, 9:19 pm

The_Walrus wrote:
firemonkey wrote:
I'm 62. It sounds like I'm living on borrowed time . I'm wondering what affects shorten the lifespan .

I also have schizoaffective disorder which should further shorten the lifespan.

Having made it to 62, you can probably expect to live a full typical lifespan.

Autistic life expectancies are short for three main reasons:

- higher rates of depression and associated suicides, particularly in young adulthood
- restricted and unhealthy diets
- childhood accidents and filicides (being murdered by your parents)

Make it to adulthood and you’ve got past one of those factors. Make it to 40 and your chance of committing suicide drops. Eat a balanced diet and you’re effectively an NT.

I completely disagree. I do believe what you said about epilepsy though. I am almost 53 now and I am very health conscious. I have always been an athlete and I eat very healthy compared to most people. I do know that restricted and/or unhealthy eating plays a factor for many people on the Spectrum but even for people who eat relatively well, we can still deteriorate and do so very quickly as we age which can shorten our lifespans significantly.

I am now, on a near daily basis, feeling and dealing with what can be life threatening effects of decades of sensory, emotional, and many other types of overloads which are now wreaking havoc on my immune system and ability to sustain any kind exposure to stimuli of any sort. I also have Autistic related cumulative PTSD where I can be completely incapacitated for days from single conversations. The effects of the PTSD have physical effects on my body where it can even affect my ability to breathe. I had one such conversation this past Tuesday. The conversation lasted about five minutes and I was completely incapacitated for three days. The first day, it was a struggle to keep my breathing regular. I am also much more frequently and deeply affected by sensory overload, especially sound than I ever have been before, and now, I am much more affected by sensory overload with light than I ever have been before to where I become physically ill in some lit areas where I had no problems before. I am also much more deeply affected by touch and other people's body temperatures and other people's movements than I have every been before. I had to leave a Special Olympics practice early yesterday because I got physically ill because of the movements and speech of the two girls next to me.

I literally feel like life and sheer simple existence are becoming much more difficult to sustain and that I am always so vulnerable and fragile and so close to having another massive burnout. If I do have another massive burnout, I honestly wonder if I will be able to physically survive it.


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24 Nov 2019, 9:28 pm

skibum -- PTSD ... aghhh! I can relate to you, although I realize no two people experience it the same way. I feel like I have PTSD because of the extremely and difficult situations surrounding my parents' deaths in the recent past. I tried to get professional help for them, but I ended up taking around 60 days off from work to stay with them. I don't regret doing it. I am so happy that I helped them. But I think I have PTSD. In addition to my Asperger's sensory issues, I feel like I am having greater difficulties in dealing with things.


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24 Nov 2019, 10:06 pm

PTSD is extremely common as a comorbid with any ASD. And if you have had acute trauma as well, it makes it worse. I have had both. I have had a lot of acute trauma in my past and I have cumulative PTSD from just being Autistic and having to deal with the effects of trying to live as an Autistic in an NT world.

The conversation I had this past Tuesday which completely knocked me out for days, literally, was a cumulative effect of PTSD from having to justify why I have the right to exist as an Autistic person. I have to have that conversation with so many people so often, it seems like I have had it with 99% of the people that I have encountered in my adult life, and so now any time I have it in a hostile sort of way, the PTSD triggers significantly and it literally affects me so much that I suffer not only emotionally and psychologically but physically for days.

I have a trauma specialist psychologist that I see every week as well as my neuropsychologist who diagnosed me whom I have seen once a month for the past five years. Both of them agree that there is nothing that can be done for me as far as treatment because my acute traumas that I have suffered throughout my life since childhood, most of them from being Autistic, are so intertwined with the traumas that I deal with every single day as a severely affected Autistic person who does not look severe at all, that the PTSD is so complex and complicated that there is no way that they can even begin to do anything about it to help me. The best and only thing they can do, which is what is most helpful to me is to provide me, with safe spaces when I see them so that I can take a break from life for the 45 minutes that I am with them. There are times when I literally just go to our sessions and sleep the whole time and they are happy to let me do that because they understand that that is exactly what I need. I can also sit on the floor and just play with the toys in the room if I want to. They also try to help me find ways to do my sports or other things like music and equine therapy. So that is actually helpful to me. And of course I can talk about anything I want and they listen and learn and validate and support me.

I also have a case worker with whom I can also talk about anything I want and she is just like a good friend and support. But I need all of these people in order to just survive now because I have become so psychologically and neurologically fragile. I even have a friend who works in crisis at the hospital who has me sleep in a locked room anytime I show up there if I am in crisis, which is basically what I need if I am in crisis.

But I even had to basically quit my job as well. I had cut my hours down to 6 hours a week but I can no longer handle the social aspects of the job even for three hours a day two days a week because I am so neurologically weak now. So now I only cover shifts if someone needs emergency coverage. But all of this is just cumulative effects of being Autistic. So no, for me, making it to 52 does make me nearly nt. I am so much more severe now than I have ever been and it seems like I am getting more fragile and more severe in my Autistic issues every day.


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25 Nov 2019, 1:43 am

The_Walrus wrote:
firemonkey wrote:
I'm 62. It sounds like I'm living on borrowed time . I'm wondering what affects shorten the lifespan .

I also have schizoaffective disorder which should further shorten the lifespan.

Having made it to 62, you can probably expect to live a full typical lifespan.

Autistic life expectancies are short for three main reasons:

- higher rates of depression and associated suicides, particularly in young adulthood
- restricted and unhealthy diets
- childhood accidents and filicides (being murdered by your parents)

Make it to adulthood and you’ve got past one of those factors. Make it to 40 and your chance of committing suicide drops. Eat a balanced diet and you’re effectively an NT.

Oh, just remembered higher rates of epileptic attacks. The solution there is of course to it have epilepsy. That’s even more flippant than it sounds because it often comes on later in life. I don’t think research has been done on whether elderly autistics are more likely than elderly NTs to develop epilepsy.


Last suicide attempt was in 1984. I was 27. Diet isn't brilliant , but it's not absolutely terrible either. It's been better since I've lived here i.e. gone from about 14 takeaways a month to 2 a month.



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25 Nov 2019, 2:52 am

naturalplastic wrote:
You mean that you want to take THAT guy's idea, and make it gospel?

Well...okay. Lets go with that.

I got snared into debating him because I misunderstood him. I assumed that he was going by the more common vertical "functioning levels" of autism, and that "100 percent autistic" would mean the ultimate LFA: a totally nonverbal, and totally nonfunctioning, totally unreachable, person in a ward (as opposed somekind of ideal NT being 0 percent autistic). He was in fact using a totally different horizontal scale for his "percentage of autism" notion.

You can be on any functioning level of autism and still vary on his perpendicular scale of "percentage of autism". What he is talking about how machine-like or how robot like you are, as opposed to being ...I dunno...how "human like"... you are. My understanding of his understanding of it is that a 100 percent autistic would be like Spock, or like Jaime the Robot in the Sixties spy sitcom "Get Smart". High functioning, well dressed, articulate, intelligent, but...machine like, pure logic, not emotional in the usual sense, and also impaired at sensing nuance, context, or being able to "read between the lines", taking things literally..

And actually there is a certain logic to what he is saying. I have seen trainwreck conversations between folks on WP when one person (who may have a higher IQ than the other person and have a better job than the other person, but) make an idiot of themselves when talking to the other person because the first person takes thing too literally and doesn't read between the lines the way an NT or the second person does. Further - the guy who started that thread may well be an example of what he is talking about. In this dichotomy that he invented he himself would be "close to 100 percent autistic". He is rather robot like in the way he takes things literally.

How would you tell such a person? Well... the more they act like Jaime the robot, the closer to a 100 percent they are!


Hymie the robot. And there was nothing robotic or Spock-like about "your_boy" both in his descriptions of what makes him a 2.0 superior human nor in the way he reacted to the posts made by others.



Last edited by EzraS on 25 Nov 2019, 4:56 am, edited 2 times in total.

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25 Nov 2019, 3:09 am

The way it could be determined what percentage of autism a person has is if first a thoroughly tested system for that kind of measurement which was accepted by the scientific community existed.

And then second if such an evaluation was made via thorough clinical testing and evaluation.

That is how my level and extent of autism has been established. When I talk about my level of autism I am just repeating what was determined by experts after extensive evaluations and tests. Rather than it being based on my personal evaluation or assessment.



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25 Nov 2019, 5:23 am

EzraS wrote:
naturalplastic wrote:
You mean that you want to take THAT guy's idea, and make it gospel?

Well...okay. Lets go with that.

I got snared into debating him because I misunderstood him. I assumed that he was going by the more common vertical "functioning levels" of autism, and that "100 percent autistic" would mean the ultimate LFA: a totally nonverbal, and totally nonfunctioning, totally unreachable, person in a ward (as opposed somekind of ideal NT being 0 percent autistic). He was in fact using a totally different horizontal scale for his "percentage of autism" notion.

You can be on any functioning level of autism and still vary on his perpendicular scale of "percentage of autism". What he is talking about how machine-like or how robot like you are, as opposed to being ...I dunno...how "human like"... you are. My understanding of his understanding of it is that a 100 percent autistic would be like Spock, or like Jaime the Robot in the Sixties spy sitcom "Get Smart". High functioning, well dressed, articulate, intelligent, but...machine like, pure logic, not emotional in the usual sense, and also impaired at sensing nuance, context, or being able to "read between the lines", taking things literally..

And actually there is a certain logic to what he is saying. I have seen trainwreck conversations between folks on WP when one person (who may have a higher IQ than the other person and have a better job than the other person, but) make an idiot of themselves when talking to the other person because the first person takes thing too literally and doesn't read between the lines the way an NT or the second person does. Further - the guy who started that thread may well be an example of what he is talking about. In this dichotomy that he invented he himself would be "close to 100 percent autistic". He is rather robot like in the way he takes things literally.

How would you tell such a person? Well... the more they act like Jaime the robot, the closer to a 100 percent they are!


Hymie the robot. And there was nothing robotic or Spock-like about "your_boy" both in his descriptions of what makes him a 2.0 superior human nor in the way he reacted to the posts made by others.


Well..I guess I shoulda spelled it with an H to avoid confusion. But since I never meet an Anglo person named "Hymie" in real life I spelled it the Spanish way on impulse. :)

I did spelled it Hymie the last time I talked about that TV character on WP a few months ago. Just a random choice. You could go either way like a coin toss. Lol!


In Spanish "J" is pronounced like "h" (like in "Juan"). And that first name is more common in Spanish speaking countries. So that's why I spelled it that way. It's a Spanish equivalent of "James".

The way our boy (who calls himself "Your-boy") talked is so weird - it aint typically human.Thats for sure. In some ways it was rather blunt and machine like.

That's the problem with text. It does make a difference what tone of voice you imagine the person is speaking in.

I took him at his word ...that he honsestly doesn't understand why he is pissing folks off. And I heard him as him just keeping on being his weird self- and getting everyone even more riled. You might imagine him getting emotional and defensive from reading the same words.

Of course I skimmed most of the later part of the thread, and I especially skimmed most of what HE said (because it was walls of text about his neocortex, or something) Lol! So you probably know it better than I do.