A trait of Autism the so called professionals have missed

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b_edward
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03 Feb 2014, 1:54 am

I think it a crazy situation we get into. I'm the one always saying, -- "but how will this affect other people", or "but how will this affect John or Sally..."

Then I'm told (condescendingly) that I need to stop worrying about what other people think, or that you "can't please everybody." (2 cliches which both don't apply, since I wasn't worried what others think, and I wasn't trying to please everybody.) And then they say that I need to be more confident. Hmm... so I was worried about the welfare of someone who is not myself. That means I need to be more confident? Does it really mean you want me to be more selfish? I can't tell.



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03 Feb 2014, 2:49 am

sharkattack wrote:
The official DSM say people with Autism lack empathy.


The word empathy is not mentioned in the DSM 5 diagnostic criteria for Autistic Spectrum Disorders

Empathy issues would seem to fall under this language
"Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication."

Many experts definitions of Aspergers/Autistic Spectrum Disorders will mention deficits in empathy. That could mean reduced empathy, no empathy, "normal" empathy in some areas deficits in others.

At one time it as conventional wisdom among experts that Autistic people lacked empathy. That belief still lingers among non-experts.

Diagnostic criteria and most listing of Autistic traits are based on the worldview of the majority. "Neurotypical" is as much of a pervasive condition as Autism is.


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03 Feb 2014, 7:11 am

Willard wrote:
Once again, Empathy is not an emotional ability, it's a social skill.

Empathy is the ability to read nonverbal signals and respond to them appropriately. This is what autistic people lack. To know what others are feeling by the way they are behaving and to know what the proper response is and take that action automatically. Quite honestly, autistic people can be in the same room with a person who is very depressed and needing a hug, without ever noticing until they tell us. Frankly, we tend to be so wrapped up in our own thoughts, we easily miss details like that, just as we miss facial expressions through lack of eye contact. We're not intentionally cruel, just unobservant when it comes to people.

The ability to resonate with someone else's feelings (once you know what those feelings are) is Sympathy. Autistic people are certainly capable of feeling pity or compassion for others who are hurting, once we know that they are hurting. But you can feel deeply for someone's suffering and still be at a complete loss as to what to do to help.

This is a common misunderstanding, only made worse by that stupid "Empath" character on Star Trek NG, which totally blurred the line between the two.

Empathy = Social Skill

Sympathy = Emotional Reaction

Not the same thing.


I completely agree. That is, I wish people would linguistically distinguish between these abilities in the way you do. Alas, 99% of the English-speaking world, including the authors of dictionaries, use the term empathy to describe both abilities. The Oxford Dictionary, for example, defines empathy as "the ability to understand and share the feelings of another." And Merriam-Webster says "the feeling that you understand and share another person's experiences and emotions : the ability to share someone else's feelings". This bugs me because it causes a lot of misunderstandings, but who am I to argue with a dictionary.

To make things worse, the medical science community also falsely conflates these two qualities. The checklists for narcissistic personality disorder and antisocial personality disorder both list a lack of empathy, even though narcissists and sociopaths are perfectly capable of reading body language and facial expression. What they actually lack is sympathy. We somehow need to convince psychiatrists, dictionary publishers, and the general public alike that we're right and they all got it wrong :)



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03 Feb 2014, 8:37 pm

Verdandi wrote:
But unfortunately a lot of people use a more vernacular definition of empathy while referring to autism. This includes medical professionals. . .

Some professionals are helpful most of the time, some professionals are in the sloppy middle, sometimes helpful and sometimes not, and we may be able to matter-of-factly inform about autism along the way. And some professionals are egotists, ideologues, whatever and are not generally helpful.

And so, yes, helpful professionals are one path.

Another path is to take a deep breath and a second deep breath and think about forming our own organizations such as ASAN. And sometimes we might only have one organization and that's okay, but having a quiltwork of a variety of organizations is probably the best of all worlds. Two examples, we can have volunteers not just giving advice on job hunting but also doing some of the leg work, and we can have volunteers to help with actual tutoring of students in formal education. And one or several people can run this from their kitchen table, perhaps better than an organization with letterhead and a storefront.

Disclaimer: I'm a member of ASAN but I'm not really active.



RaspberryFrosty
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04 Feb 2014, 1:52 am

I actually read an article where it says that people on the spectrum can shut down and show absolutely no emotion because we have may overempathize too much. I think it varies on the individual.


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ammmartin
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04 Feb 2014, 2:17 am

Keep in mind, description of autism as described by NTs obviously have a narrow view on autism which never reflects the true reality of those who have it and describe it from our own unique perspective.

Empathy and compassion is hardwired into our brains from birth and recent studies do show that those of us with autism do have the ability to sympathesize with others, it is just that sensory overload gets in the way which NTs see in us as lack of empathy which apparently they want to see this in autism but not our basic human traits as well as our interests and our own unique perspectives.

Just because someone has autism doesn't necessarily mean they lack emotions. I myself can tell when someone is happy, angry or sad even if I do have a hard time maintaining eye contact which is becoming less of a problem.



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04 Feb 2014, 2:27 am

I don't believe anyone can feel what another person feels. We always feel our own feelings. But there are numerous persons around me who seem to have an idea about what another person's feelings might look like and - as was described above - react adequately and automatically. I wonder where they got the software. It need not be something dramatic. Take the situation somebody comes round and shows off a new baby. How the heck do those guys I presume must be NTs know what face to make, how to bend over the stroller and what to say? I mean, I have had four babies myself and I still am at a loss what to do when a colleague drops by staff room with a suckling.
I don't care if you call it "lack of empathy" or "lack of software" - it's still a social deficit on my part, and since it's been around for 50 years and obnoxiously remains in spite of practice, therapy and couinselling galore, I presume it's here to stay.



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04 Feb 2014, 10:08 am

Willard wrote:
Once again, Empathy is not an emotional ability, it's a social skill.

Empathy is the ability to read nonverbal signals and respond to them appropriately. This is what autistic people lack.


This.

We also have an easier time appropriately reacting to situations we have experienced ourselves and dealing with emotions we've processed many, many times.

NTs do better in strange waters than we do...that's where it's most noticeable.



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04 Feb 2014, 10:56 am

Willard wrote:
Once again, Empathy is not an emotional ability, it's a social skill.

Empathy is the ability to read nonverbal signals and respond to them appropriately. This is what autistic people lack.


Empathy is the product of an actual neurological structure (Mirror Neurons) that is directly tied to the emotional centers of the brain. It gets processed there first before it gets 'sent' to the cognitive centers. The ability to 'read' those signals is literally done by the emotional centers of the brain and the ability to respond is a cognitive function. The response is the true social skill set...and since the cognitive center wires itself and trains itself (skills) at a very young age based on the emotional input, then if the emotional input is incomplete or just not there, the cognitive center wires itself 'wrong' ...and the result is the awkwardness you all know so well.

sharkattack wrote:
The official DSM say people with Autism lack empathy.


I have poured my heart out on this board and I have got nothing back except warmness kindness and good advice that has really helped me in practical ways.

The trait of Autism missed is I think people on the spectrum are really kind helpful people who will go out of their way to be helpful.


Empathy is a very broad term and used in many different forms. Just because you can relate or offer support does not mean you are empathic or empathizing.

In my book empathy is the ability to connect emotionally to another's situation on the spot, as it happens. Sympathy is the ability to relate emotionally to another's situation after the fact, after you THINK about it.

Most people with AS do have a serious lack of empathy but an overabundance of sympathy. We think before we feel. That's what I think.



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04 Feb 2014, 11:15 am

I'm confused about the empathy issue. I think that I care about people, but do I really? How do I prove it?

According to alexithymia tests, I can't even tell what I'm feeling, much less anyone else. If I don't understand emotions at all, and can't identify them, how can I feel empathy?

So I'm just not sure if I'm able to feel empathy or not. I wish people well, and want them to be happy, and if they're having a problem, I want to help them. But maybe that's just logical and philosophical, and not emotional. I definitely don't feel what they're feeling.



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04 Feb 2014, 11:28 am

Ashariel wrote:
I'm confused about the empathy issue. I think that I care about people, but do I really? How do I prove it?

According to alexithymia tests, I can't even tell what I'm feeling, much less anyone else. If I don't understand emotions at all, and can't identify them, how can I feel empathy?

So I'm just not sure if I'm able to feel empathy or not. I wish people well, and want them to be happy, and if they're having a problem, I want to help them. But maybe that's just logical and philosophical, and not emotional. I definitely don't feel what they're feeling.


You feel sympathy. You think about something then feel it once you've internalized it. Think of it as a cognitive emotion.



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04 Feb 2014, 3:56 pm

Sare wrote:
When I went to get my Asperger’s assessment done the psychologist asked me if I had sympathy for others (meaning did I feel sorry for others). I said No, but I did feel guilt and shame. So, while I lacked sympathy the psychologist acknowledged that I had a lot of compassion and empathy.

I can choose to express sympathy once someone has expressed what exactly has been bothering them, but I sometimes feel a bit resistant simply because the majority of people have not had any sympathy for me. It has always felt like I have had to go out of my way to understand others, but they have never bothered to reciprocate those efforts. However, I now see that they might just have been oblivious to differences (difference in thinking). How are you supposed to give someone something you lack the capacity (knowledge) to give? So, there is a neurological misunderstanding which occurs. Things are overlooked. NTs assumed I thought like them. I do not look any different to them, so why would there be a difference? Why would there be a need to question what you assume is natural and should apply to everyone? NTs assume I have similar needs and ways of expressing those needs. This is a pitfall shared by those on the spectrum. Responses are automatic. We automatically assume everyone else thinks like us, so what we naturally think would comfort us is automatically (unconsciously) applied to NTs. It is not because we lack empathy. We come to believe what we are doing is ‘wrong’ because of the reactions we are given from NTs. We are pushed to learn ‘correct’ responses. And to pause and think about the 'correct' social responses.

There have been times when I have been distraught and it has gone unacknowledged by NTs (our distress signals are different?). I, on the other hand, have been able to pick up through affective and somatic empathy when others have been distressed. At times I have been overwhelmed by this distress. In more recent years my study experience has allowed me to pick up the 'cues' through observation. I might not always know what to say in every situation, but I recognise others distress and may demonstrate this awareness through actions. I may do ‘something’ to try to make the other person feel better instead of using words. Now that I know what NTs need I am able to adapt my responses to satisfy them. Also, there was a point where I didn't know what others (females) wanted from me exactly. I always assumed they wanted me to fix their problems because that is what I would have wanted (I am female). I now know differently. Most NTs are oblivious (ignorant) to our needs, so they don’t reciprocate the effort. We have to emulate NTs to survive and this can be an exhausting process. We have our own unique way of thinking and have to learn the NT way of thinking. I know I will never truly know how a NT person thinks and they will never fully know what it is like to be on spectrum. So, how can they say with certainty what it is we experience or don’t experience? And vice-versa. What I think that NTs are trying to say with all this ‘empathy’ stuff is that we need to learn to be more responsive to their emotional ego. IMO, if they want to hold this expectation they should learn to return the favour (but is that realistically ever going to happen anytime soon? No).

There is no universally accepted definition for empathy or sympathy. Different disciplines have different definitions. And people have a tendency to confuse the two. There are actually quite a few different types of empathy e.g. cognitive (imaginational empathy or perspective taking), affective, emotional (vicarious sharing of emotion) and somatic. Cognitive empathy skills are taught in a lot of counselling courses because a lot of people lack cognitive empathy skills. My supervisor, on cognitive empathy, said that a lot of NTs do not get it right either. Heck, I can share an experience I had on my last day of placement. A manager wrongly assumed that I ‘must’ have felt embarrassed because she understood that I did not like being the centre of attention, and she had just put me on the spot in front of a group of people. I did not feel embarrassed by that experience. In truth, I had missed the social cue and was oblivious to what was wanted of me in that particular situation. I felt quite neutral. So, what did I do? I corrected her and let her know her (not in these words exactly) that her cognitive empathy was off. I honoured how I was feeling instead of allowing someone else to incorrectly assume how I should be feeling in that situation. It has been my experience that NTs will either assertively correct you if you get things wrong or will react in a passive/aggressive manner in response to the 'slight'.

This might not be the experience of all on the spectrum, but I find that I have always had hypersensitivity. This is particularly true of my response to negative emotions. In fact, the AS female profile states that females are often over-empathic rather than lacking in empathy. I know at certain points in my life when things became too much (I couldn’t cope with the sensory input) I became very self-focused and had apathy towards others. People were painful (or caused pain), so all my 'care' went to animals and nature. Once I worked through my issues (stressors) things became easier to manage and my 'empathy' returned. I was no longer in survival mode. I was able to spend time to intellectually develop the skills and knowledge that I ‘naturally’ lacked. I am now able to maintain very steady (not natural because I sometimes over-stare) eye contact, I am able to observe peoples non-verbal behaviours because I am not self-focused and hiding in my own world, and I am able to pick up on all sorts of things NTs miss. I am present to the world around me. Self-focus is nothing to shame (toxic-shame) yourself about, as many NTs do this too - particularly those who have gone through trauma (complex and PTSD kind). I know a lot of my shame issues stemmed from me taking what others said at face-value. I trusted what others said as truth. For some reason I thought they knew better (dependency issues, not developing trust in self, probably contributed to this) and this created a lot of self-doubt. Being constantly criticised by others distorted my thinking too. And I lost sight of my innate values for a time because I was pushed to operate according to a different set of 'rules'. So, shame developed from those experiences and I believed myself to be 'defective' (wrong), as opposed to just being neurologically different. To break out of all that distorted thinking I challenged all the rules I had adopted throughout life.

Addit: Articles on shame:
http://robertmasters.com/writings/shame ... -exposure/
http://www.psychologytoday.com/blog/int ... us-emotion
http://www.counselingcenter.illinois.ed ... rom-shame/
http://www.psychsight.com/ar-shame.html


Thank you so much for this post, I can relate to everything you wrote, so much so that it is kind of overwhelming.



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04 Feb 2014, 6:02 pm

RaspberryFrosty wrote:
I actually read an article where it says that people on the spectrum can shut down and show absolutely no emotion because we have may overempathize too much. I think it varies on the individual.


My emotions seem to shut down when they should be their strongest, at least strongest negatively, in response to social situations that should seemingly upset me a great deal.


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05 Feb 2014, 6:20 pm

dianthus wrote:
Sare wrote:
When I went to get my Asperger’s assessment done the psychologist asked me if I had sympathy for others (meaning did I feel sorry for others). I said No, but I did feel guilt and shame. So, while I lacked sympathy the psychologist acknowledged that I had a lot of compassion and empathy.

I can choose to express sympathy once someone has expressed what exactly has been bothering them, but I sometimes feel a bit resistant simply because the majority of people have not had any sympathy for me. It has always felt like I have had to go out of my way to understand others, but they have never bothered to reciprocate those efforts. However, I now see that they might just have been oblivious to differences (difference in thinking). How are you supposed to give someone something you lack the capacity (knowledge) to give? So, there is a neurological misunderstanding which occurs. Things are overlooked. NTs assumed I thought like them. I do not look any different to them, so why would there be a difference? Why would there be a need to question what you assume is natural and should apply to everyone? NTs assume I have similar needs and ways of expressing those needs. This is a pitfall shared by those on the spectrum. Responses are automatic. We automatically assume everyone else thinks like us, so what we naturally think would comfort us is automatically (unconsciously) applied to NTs. It is not because we lack empathy. We come to believe what we are doing is ‘wrong’ because of the reactions we are given from NTs. We are pushed to learn ‘correct’ responses. And to pause and think about the 'correct' social responses.

There have been times when I have been distraught and it has gone unacknowledged by NTs (our distress signals are different?). I, on the other hand, have been able to pick up through affective and somatic empathy when others have been distressed. At times I have been overwhelmed by this distress. In more recent years my study experience has allowed me to pick up the 'cues' through observation. I might not always know what to say in every situation, but I recognise others distress and may demonstrate this awareness through actions. I may do ‘something’ to try to make the other person feel better instead of using words. Now that I know what NTs need I am able to adapt my responses to satisfy them. Also, there was a point where I didn't know what others (females) wanted from me exactly. I always assumed they wanted me to fix their problems because that is what I would have wanted (I am female). I now know differently. Most NTs are oblivious (ignorant) to our needs, so they don’t reciprocate the effort. We have to emulate NTs to survive and this can be an exhausting process. We have our own unique way of thinking and have to learn the NT way of thinking. I know I will never truly know how a NT person thinks and they will never fully know what it is like to be on spectrum. So, how can they say with certainty what it is we experience or don’t experience? And vice-versa. What I think that NTs are trying to say with all this ‘empathy’ stuff is that we need to learn to be more responsive to their emotional ego. IMO, if they want to hold this expectation they should learn to return the favour (but is that realistically ever going to happen anytime soon? No).

There is no universally accepted definition for empathy or sympathy. Different disciplines have different definitions. And people have a tendency to confuse the two. There are actually quite a few different types of empathy e.g. cognitive (imaginational empathy or perspective taking), affective, emotional (vicarious sharing of emotion) and somatic. Cognitive empathy skills are taught in a lot of counselling courses because a lot of people lack cognitive empathy skills. My supervisor, on cognitive empathy, said that a lot of NTs do not get it right either. Heck, I can share an experience I had on my last day of placement. A manager wrongly assumed that I ‘must’ have felt embarrassed because she understood that I did not like being the centre of attention, and she had just put me on the spot in front of a group of people. I did not feel embarrassed by that experience. In truth, I had missed the social cue and was oblivious to what was wanted of me in that particular situation. I felt quite neutral. So, what did I do? I corrected her and let her know her (not in these words exactly) that her cognitive empathy was off. I honoured how I was feeling instead of allowing someone else to incorrectly assume how I should be feeling in that situation. It has been my experience that NTs will either assertively correct you if you get things wrong or will react in a passive/aggressive manner in response to the 'slight'.

This might not be the experience of all on the spectrum, but I find that I have always had hypersensitivity. This is particularly true of my response to negative emotions. In fact, the AS female profile states that females are often over-empathic rather than lacking in empathy. I know at certain points in my life when things became too much (I couldn’t cope with the sensory input) I became very self-focused and had apathy towards others. People were painful (or caused pain), so all my 'care' went to animals and nature. Once I worked through my issues (stressors) things became easier to manage and my 'empathy' returned. I was no longer in survival mode. I was able to spend time to intellectually develop the skills and knowledge that I ‘naturally’ lacked. I am now able to maintain very steady (not natural because I sometimes over-stare) eye contact, I am able to observe peoples non-verbal behaviours because I am not self-focused and hiding in my own world, and I am able to pick up on all sorts of things NTs miss. I am present to the world around me. Self-focus is nothing to shame (toxic-shame) yourself about, as many NTs do this too - particularly those who have gone through trauma (complex and PTSD kind). I know a lot of my shame issues stemmed from me taking what others said at face-value. I trusted what others said as truth. For some reason I thought they knew better (dependency issues, not developing trust in self, probably contributed to this) and this created a lot of self-doubt. Being constantly criticised by others distorted my thinking too. And I lost sight of my innate values for a time because I was pushed to operate according to a different set of 'rules'. So, shame developed from those experiences and I believed myself to be 'defective' (wrong), as opposed to just being neurologically different. To break out of all that distorted thinking I challenged all the rules I had adopted throughout life.

Addit: Articles on shame:
http://robertmasters.com/writings/shame ... -exposure/
http://www.psychologytoday.com/blog/int ... us-emotion
http://www.counselingcenter.illinois.ed ... rom-shame/
http://www.psychsight.com/ar-shame.html


Thank you so much for this post, I can relate to everything you wrote, so much so that it is kind of overwhelming.


I second that. It was beautifully written, Sare.