"Everyone has AS to some degree." This reply ok?

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rebbieh
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20 Nov 2014, 5:48 am

Someone asked me about AS online (not here at WP). They said that half of the people they know are awful at "detecting when nobody gives a s**t" etc. The person then said the symptoms of AS seem "absurdly vague", asked me to describe some of the things I have a difficult time with at university and in general and ended with saying that it seems like everyone has AS to some degree.

What would you reply? Here's what I'm thinking of writing (it's quite long but still):

"Sorry, this will be long. But since you asked I feel like I need to explain some things and I find it difficult to keep things short.

I can't convince you that AS is real or that not everyone has it but believe me when I say that not everyone has it. I do, however, think that "normal" people and autistic people are sort of all on one spectrum (this is my personal opinion but I know it's shared by other people as well). The "normal spectrum" and the "autistic spectrum" aren't necessarily two different ones. I personally think it's all the same. I think that autistic behaviours are behaviours that can be seen in the "normal" population as well but to a much lesser extent. I think the difference is that people who are autistic experience those things much more often and more intensely than "normal" people do. In order to be diagnosed with an autism spectrum disorder, the symptoms/traits need to be severe enough to affect your everyday life and they need to have have been present since childhood. Even if you display most of the signs of autism but they don't affect your life in a negative way, you won't get diagnosed.

We're all different. Just like "normal" people all autistic people are unique and we struggle with different things. For me, AS isn't that much about "detecting when nobody gives a s**t". I don't really have a problem with that (there are some exceptions though). For me it's more about other things and in social situations my problems are mostly about not knowing what to say, having problems with making enough/adequate facial expressions or showing interest (nodding in agreement and so on) etc., even if I'm trying. I often feel more like an observer than a participant in social situations.

One of the things that make it very difficult for me at university (and in other areas of my life) is the fact that I have a very hard time generalizing certain things. I also get stuck on details and find it difficult to see the "bigger picture" (can give example if needed). Things like that are, as you might understand, problematic. At university I also have a hard time with things such as getting overloaded by external stimuli (especially sounds and visual stimuli), getting started with things, speaking in front of people (oral presentations etc), knowing what's important, prioritizing, performance anxiety, perfectionism, knowing how to deal with things that aren't structured, knowing how much time I should spend on things etc. All of that lead to a very high level of anxiety, which in turn often leads to me shutting down and not functioning properly.

All of the things I've mentioned in this message are just examples of the things I go through on a daily basis. Do I think I'm the only one going through these things? No. Do I think only people with autism experience things like the ones I've described? Nope. But I do think we experience it differently and to a much greater extent."

Let me know what you think. Too long? Too weird? Too detailed? Too [insert negative word here]?



Skilpadde
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20 Nov 2014, 5:56 am

Some years ago I read somewhere (don't recall where) that the problems seen in Aspergers are problems a lot of people can recognize. The difference is the extent of it. It's not to the point of impairment for them, but it is for us.
I think that needs to be made clear to them. My experience is that NTs tend to think just about everything that actually needs to be said is too much, so I would keep it short. For beings so talkative, they sure can't talk or pay attention! Chances are it'll just be met with tl;dr.


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rebbieh
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20 Nov 2014, 6:03 am

Skilpadde wrote:
Some years ago I read somewhere (don't recall where) that the problems seen in Aspergers are problems a lot of people can recognize. The difference is the extent of it. It's not to the point of impairment for them, but it is for us.
I think that needs to be made clear to them. My experience is that NTs tend to think just about everything that actually needs to be said is too much, so I would keep it short. For beings so talkative, they sure can't talk or pay attention! Chances are it'll just be met with tl;dr.


Ok, so how do I shorten it down but still keep the important stuff? This is seriously a problem I have. I think it's really difficult to "sift" (not sure that's the word used in English) through information and choose what's most important since everything is important to me. So yeah, I welcome suggestions on how to shorten it.



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20 Nov 2014, 6:08 am

All mental disorders/conditions, consist of normal/natural human behaviors....like the symptoms are not things that would be abnormal for people to do in various contexts. So with autism of course the symptoms can resemble traits people not on the autism spectrum who are normal would have....but with autism these traits are to the extent they interfere with functioning significantly enough for a diagnoses. Or for example there is the mental illness depression, everyone feels sad/depressed sometimes but someone does not have a condition just because they feel that....it's only a condition/disorder if it's to the extent it interferes with functioning and persists even when situational factors are improved.

I think we are all human, but not all on the same spectrum per say...


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Skilpadde
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20 Nov 2014, 6:25 am

I wish I knew how to do that, rebbieh. But I have the same problem. I say what I think needs to be said, but it's too long winded for NTs. If I cut it down to the size they seem to prefer I don't feel like I have been able to convey anything.

Pensive once said that she had learned to express herself as if she was just summarizing what she wanted to say. I try doing that but it looks so shallow to me.

How about something like this:

"Yes, everyone can have these problems to some extent, but they don't cause most people impairments and ostracism. And most people don't experience these problems with everyone, all the time."
And then follow up with a personal example.


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cubedemon6073
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20 Nov 2014, 8:17 am

Skilpadde wrote:
I wish I knew how to do that, rebbieh. But I have the same problem. I say what I think needs to be said, but it's too long winded for NTs. If I cut it down to the size they seem to prefer I don't feel like I have been able to convey anything.

Pensive once said that she had learned to express herself as if she was just summarizing what she wanted to say. I try doing that but it looks so shallow to me.

How about something like this:

"Yes, everyone can have these problems to some extent, but they don't cause most people impairments and ostracism. And most people don't experience these problems with everyone, all the time."
And then follow up with a personal example.


I know exactly what you mean Skilpadde. I do understand what you're saying when you say it looks so shallow to you. It lacks so much substance and doesn't get to the heart of the matter.

I have had this happen to me as well. Has anyone else had this problem as well. When I try to discuss my issues with others they interject and will not let me finish making my point. This is my experience on multiple occasions with family members. Eventually the conversation meanders way off of the original point I was trying to make. Trying to explain myself doesn't work.



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20 Nov 2014, 9:06 am

I think there is a fairly short answer:

"I can understand why you would think that, but it really isn't true."

"There are two characteristics of autistic people that are common in the general population, but they don't occur together in neurotypical people. It isn't the individual symptoms that make a person autistic but the combination of them--and the need for support because of them."


If they want to talk about it more than that, you could add:

"if you are interested in the common autistic characteristics found widely in the neurotypical population, there was a recent study that showed this:

Quote:
Nearly half the group, 1,059 people, reported more social difficulties and less attention to detail. The remaining 1,284 participants reported fewer social difficulties and greater detail orientation. In other words, the researchers found that two core features of autism are widespread in the general population ? they just occur one at a time. An autism diagnosis only occurs when these features overlap.
and you could give them this link, if you have their email address or phone#:
http://sfari.org/news-and-opinion/blog/ ... population
You could also point them to the criteria and note that most people really don't fit:
http://www.cdc.gov/ncbddd/autism/hcp-dsm.html
Or you could show them the severity level descriptors on page 6 of this PDF:
https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(ASD.Guidelines)Feb2013.pdf
That should help to clear things up if they really want to know.

I think much of the time that people say "aren't we all a little autistic" they don't really think it, but are trying to find a way of saying "your difference doesn't matter to me in a negative way--I see us as part of a group--I am not rejecting you." That is to say, they are trying to be nice, not trying to deny your disability.

If they are trying to say autism is not real at all, then they are not worth your time talking to.



Last edited by Adamantium on 20 Nov 2014, 10:01 am, edited 1 time in total.

yournamehere
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20 Nov 2014, 9:37 am

Adamantium wrote:
I think there is a fairly short answer:

"I can understand why you would think that, but it really isn't true."

"There are two characteristics of autistic people that are common in the general population, but they don't occur together in neurotypical people. It isn't the individual symptoms that make a person autistic but the combination of them--and the need for support because of them."


If they want to talk about it more than that, you could add:

"if you are interested in the common autistic characteristics found widely in the neurotypical population, there was a recent study that showed this:
Quote:
Nearly half the group, 1,059 people, reported more social difficulties and less attention to detail. The remaining 1,284 participants reported fewer social difficulties and greater detail orientation. In other words, the researchers found that two core features of autism are widespread in the general population ? they just occur one at a time. An autism diagnosis only occurs when these features overlap.
and you could give them this link, if you have their email address or phone#:
http://sfari.org/news-and-opinion/blog/ ... population
You could also point them to the criteria and note that most people really don't fit:
http://www.cdc.gov/ncbddd/autism/hcp-dsm.html
Or you could show them the severity level descriptors on page 6 of this PDF:
https://depts.washington.edu/dbpeds/Scr ... Guidelines)Feb2013.pdf
That should help to clear things up if they really want to know.

I think much of the time that people say "aren't we all a little autistic" they don't really think it, but are trying to find a way of saying "your difference doesn't matter to me in a negative way--I see us as part of a group--I am not rejecting you." That is to say, they are trying to be nice, not trying to deny your disability.

If they are trying to say autism is not real at all, then they are not worth your time talking to.a


The last one could not be found in server.



Adamantium
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20 Nov 2014, 10:04 am

yournamehere wrote:
The last one could not be found in server.

URL parser in the text engine could not handle the parentheses. Fixed. Thanks.



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20 Nov 2014, 10:36 am

rebbieh wrote:
Someone asked me about AS online (not here at WP). They said that half of the people they know are awful at "detecting when nobody gives a s**t" etc. The person then said the symptoms of AS seem "absurdly vague", asked me to describe some of the things I have a difficult time with at university and in general and ended with saying that it seems like everyone has AS to some degree.

What would you reply?


I think what you wrote is good.

I would say that I think people confuse personality traits with neurological symptoms. A lot of what people think of as having bad social skills is related to personality traits. But autism is more than just having social difficulties. That might be what other people see on the surface, and what people describe most often as symptoms. But underlying that are real neurological differences that show up in a brain scan. Not everyone with autism is going to have exactly the same neurological differences, but there is a recognizable pattern. It can lead to being overwhelmed by sensory input, having slow cognitive processing during social interaction, or difficulty with everyday functioning.



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20 Nov 2014, 11:20 am

What I tell people is very simple. I explain to them that the actual structure of the brain and nervous system are different. If they are interested in the details of that I tell them the details. I also tell them, just like you said, that no individual symptom or trait of AS is unique to AS so yes, everyone will have some kind of understanding of that trait somehow. Then I ask them if they have every had a little cold basically a slight cough, minor headache and a sniffle for a day or two. If they say yes, I then ask them if they have ever had a full blown out flu where they could not move or get out of bed for a month with higher fevers, chills, bodily aches and pains, bronchial spams causing coughing fits and everything else. I then tell them that is the difference between what non Autistic people feel, (a little sniffle and a slight cough) which does not interfere with their lives or jobs at all, vs. the full blown out debilitating flu which is how we experience our symptoms and traits on a daily basis.

I also use diabetes as an example. Everyone has had a moment in life where his or her blood sugar has dropped or spiked. Usually we get a little light headed and it passes and we go on with our day as usual. If someone has full blown diabetes, however, that is a very different story. And I am sure the diabetic community would be absolutely outraged if we went around claiming that everyone has a little diabetes. I also use Wili-Prada Syndrome as the same example. It is a great one. All of us feel hungry every now and then but people with Wili-Prada Syndrome are missing a trigger in their body to let them know that they have been fed so they have a constant never ceasing uncontrollable hunger that makes them feel like they are 100% literally starving to death no matter how much they eat. This makes them eat non stop at a rate and amount that not only causes morbid obesity and all it's related problems but can literally cause their stomachs to burst. The only way they can control their eating is to be constantly monitored by someone else 27 hours a day. it is a grueling disease that has no treatment or cure.

But I tell people, yes, everyone feels hungry sometimes and even very hungry sometimes but there is a big difference between basic hunger and Wili - Prada and if we went around claiming that everyone has Wili-Prada because everyone gets hungry, we would never hear the end of it from people who really have it.

I also thought of a series of little games to play with people to show them what it is like to go through what we go through on a daily basis. I can share them with you if you like.


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20 Nov 2014, 11:28 am

Adamantium wrote:
I think there is a fairly short answer:

"I can understand why you would think that, but it really isn't true."

"There are two characteristics of autistic people that are common in the general population, but they don't occur together in neurotypical people. It isn't the individual symptoms that make a person autistic but the combination of them--and the need for support because of them."


This is great. The rest of your post is excellent too but this in bold is short and sweet and really good.


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skibum
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20 Nov 2014, 11:36 am

Adamantium, my computer can't open the third link you put in your post. Can you write a little bit of what it said? Thank you.


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20 Nov 2014, 11:54 am

It's a PDF, so if you don't have a reader, it won't load.

It has a lot of useful information about interpreting the diagnostic criteria, but the section I was pointing to was this, in a table

Level 3  ?Requiring very substantial support?  
Social Communication

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.  

Restricted Interests & Repetitive Behaviors
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.  

Level 2  ?Requiring substantial support?  
Social Communication


Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.  

Restricted Interests & Repetitive Behaviors
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB?s are interrupted; difficult to redirect from fixated interest.  

Level 1  ?Requiring support?   
Social Communication

Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.  

Restricted Interests & Repetitive Behaviors
Rituals and repetitive behaviors (RRB?s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB?s or to be redirected from fixated interest.  

Not a lot of people are going to claim "we're all a bit autistic" by this definition of autism.



geometrictunneling
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20 Nov 2014, 11:57 am

Everyone has Autism Spectrum Disorder? That's an insult and a good way to trivialize developmental disorders. It's the combination of specific symptoms that make up autism, you know... like any other illness.



Last edited by geometrictunneling on 20 Nov 2014, 12:00 pm, edited 3 times in total.

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20 Nov 2014, 11:58 am

Thank you so much for writing it out. This is really good.


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