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S/O Why the word aspergers should be abolished.
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amother
OP


 

Post Thu, Dec 24 2020, 1:03 pm
First of all it doesn't appear in the DSM5. It's all called ASD now. Autism Spectrum Disorder.

Aspergers is named after Hans Aspergers who studied the idea of ASD in the 1940's. He also collaborated with the nazis, want antisemitic, sent over 800 children with ASD to a "home" where they were killed for being disabled, and made many many of the children infertile amongst doing other expiriments.

Can we please please stop using this word? Aspies too. Same root.
It disgusts me every time I hear this. Especially as a Jew, someone who collaborated with those terrible nazis and idolized their ideology. He doesn't deserve to be named after.

- Signed a woman with ASD who is married to a man with ASD as well.
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amother
Sapphire


 

Post Thu, Dec 24 2020, 1:04 pm
The name may be after a bad person, but DSM-5 is wrong. It warrants a separate diagnosis.
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amother
OP


 

Post Thu, Dec 24 2020, 1:12 pm
amother [ Sapphire ] wrote:
The name may be after a bad person, but DSM-5 is wrong. It warrants a separate diagnosis.


I may be incorrect about the DSM5 - what's the difference in calling it mild autism instead of aspergers?
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amother
Slategray


 

Post Thu, Dec 24 2020, 1:14 pm
DSM-5 is not wrong. Aspergers is ASD in a much milder form. What needs to be changed is the approach to mental health issues. The stigma should not exist, most people would be diagnosed with something if they went for an evaluation.
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amother
Firebrick


 

Post Thu, Dec 24 2020, 1:17 pm
I thought because it sounds like "a$s burgers".
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byisrael




 
 
    
 

Post Thu, Dec 24 2020, 1:21 pm
Because it is very different then mild autism and needs different treatment. With the new way the DSM - 5 works here in Israel everything is called ASD (dyslexia, aspergers...) and everyone is dumped together into schols. While I see ASD as a disorder more similar to ADHD/ADD - one that needs support in a mainstream school.

I agree we could change the name - maybe to Atwood disorder to recognize the wonderful work Tony Atwood has done with the population Smile
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amother
OP


 

Post Thu, Dec 24 2020, 1:26 pm
amother [ Slategray ] wrote:
DSM-5 is not wrong. Aspergers is ASD in a much milder form. What needs to be changed is the approach to mental health issues. The stigma should not exist, most people would be diagnosed with something if they went for an evaluation.


So what are you if you are so high functioning you don't even fit the criteria for aspergers?
If ASD is low functioning and Aspergers is higher than me and my DH are....????

Yes we are in Israel and both of us are recognized as having ASD. Autism SPECTRUM disorder.

ASD means any type of autism, lower, middle, higher, mild, and invisible.

I don't think it's fair to the Autism community to label us in 2 categories as lower or higher. It's a huge spectrum. I read the recent thread where the DH likely has aspergers and I went down the list and so so many of the things don't apply for me and my DH at all! But we definitely struggle. Our struggles are more invisible.
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amother
Slategray


 

Post Thu, Dec 24 2020, 1:29 pm
amother [ OP ] wrote:
So what are you if you are so high functioning you don't even fit the criteria for aspergers?
If ASD is low functioning and Aspergers is higher than me and my DH are....????

Yes we are in Israel and both of us are recognized as having ASD. Autism SPECTRUM disorder.

ASD means any type of autism, lower, middle, higher, mild, and invisible.

I don't think it's fair to the Autism community to label us in 2 categories as lower or higher. It's a huge spectrum. I read the recent thread where the DH likely has aspergers and I went down the list and so so many of the things don't apply for me and my DH at all! But we definitely struggle. Our struggles are more invisible.

I did not mean to offend you or anyone. What I was trying to say is that it is a huge spectrum. And I agree that it should be ASD, since it includes what people used to call Aspergers.
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amother
Slategray


 

Post Thu, Dec 24 2020, 1:30 pm
amother [ OP ] wrote:
So what are you if you are so high functioning you don't even fit the criteria for aspergers?
If ASD is low functioning and Aspergers is higher than me and my DH are....????

Yes we are in Israel and both of us are recognized as having ASD. Autism SPECTRUM disorder.

ASD means any type of autism, lower, middle, higher, mild, and invisible.

I don't think it's fair to the Autism community to label us in 2 categories as lower or higher. It's a huge spectrum. I read the recent thread where the DH likely has aspergers and I went down the list and so so many of the things don't apply for me and my DH at all! But we definitely struggle. Our struggles are more invisible.

Lower or higher exists. There are people with more struggles and people with less struggles.
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FranticFrummie




 
 
    
 

Post Thu, Dec 24 2020, 1:31 pm
In my experience with quite a few people on the spectrum, HFA and Asperger's are VERY different brain structures. Even functional MRI scans show different brain patterns under the same stimuli.

People I know with Autism who are loving, creative, imaginative, and can have a great sense of humor. They march to their own drummer, and hear their own music.

People with Asperger's struggle to connect with others, read facial an social cues, generally don't have much imagination, if any. They tend to excel at anything that requires structure and discipline.

People with Autism can have excellent Theory of Mind. People with Asperger's have NO Theory of Mind. That's one of the differential diagnoses.

Of course there can be overlap in the symptoms and behaviors, but in no way do I believe that they are the same thing.

By insisting that Asperger's and Autism are the same, both types are not getting the appropriate therapies and services that they deserve, and therapists are not trained properly to treat each type of person separately. This is horribly unfair to both groups.

The spectrum is so wide, and so varied, I think there's room for a few different categories. Lumping people together in a large group usually does not end well for anyone.

You can say that you don't like the label of Asperger's, but that's like a diabetic insisting that they are "insulin challenged."

Now, we don't call people with Downs Syndrome "mongoloids" anymore, or the "R" word (thank G-d). If you want to suggest a better name for the condition, that's actually an interesting discussion.I'd be interested in hearing your thoughts on that.

(BTW, anyone with a developmental delay used to be labeled the "R" word, and that often included people with Autism or PPD-NOS. Be glad those days are gone.)
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amother
OP


 

Post Thu, Dec 24 2020, 1:33 pm
amother [ Slategray ] wrote:
Lower or higher exists. There are people with more struggles and people with less struggles.


Yes and no. The Autism community actually does not use the terms lower and higher functioning.

I personally do.

They prefer using the terms verbal or nonverbal and dependent and independent etc. I haven't been following the autism community for so long on social media but this is what I understand. No one says nowadays they have aspergers. It's all ASD for the most part.
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amother
OP


 

Post Thu, Dec 24 2020, 1:37 pm
FranticFrummie wrote:
In my experience with quite a few people on the spectrum, HFA and Asperger's are VERY different brain structures. Even functional MRI scans show different brain patterns under the same stimuli.

People I know with Autism who are loving, creative, imaginative, and can have a great sense of humor. They march to their own drummer, and hear their own music.

People with Asperger's struggle to connect with others, read facial an social cues, generally don't have much imagination, if any. They tend to excel at anything that requires structure and discipline.

People with Autism can have excellent Theory of Mind. People with Asperger's have NO Theory of Mind. That's one of the differential diagnoses.

Of course there can be overlap in the symptoms and behaviors, but in no way do I believe that they are the same thing.

By insisting that Asperger's and Autism are the same, both types are not getting the appropriate therapies and services that they deserve, and therapists are not trained properly to treat each type of person separately. This is horribly unfair to both groups.



So what exactly is Aspergers? Because I know a lot of people with ASD or as you said HFA (High functioning Autism) and no one I know fits the criteria for Aspergers.

Most people with any type of Autism struggle socially but we are learned how to read facial cues and everyone I know loves connecting to others (despite the struggles), has a good imagination, theory of mind, and actually suck at structure and discipline although we likely need it a lot.
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FranticFrummie




 
 
    
 

Post Thu, Dec 24 2020, 1:42 pm
amother [ Slategray ] wrote:
Lower or higher exists. There are people with more struggles and people with less struggles.


I really don't like the term "lower and higher". I find it very insulting. It may have some accuracy to it, but it also carries a stigma. Who wants to be "lower"?

I think it would be helpful if they could stage it by number or something. I'm not sure how it would break down, but I'm sure if the scientists put their heads to it, they could come up with something fairly accurate.

On the other hand, I have a friend who is completely non verbal and Autistic. She is a brilliant writer, hysterically funny, very intelligent, and works from home as a video game tester. For her to form a word is like asking someone to push a boulder up a hill, using only one arm (as she says.)

Then there are people who are non verbal, like my landlord's son, who has the mental age of a small toddler. He doesn't even recognize his own name, and all attempts at assistive communication have failed. He just doesn't get it, or even care. He's very happy in his own world, and never bothers anybody.

Then there are "high functioning" people who are angry, anxious, and miserable all the time. Some people on the Spectrum are very violent towards caretakers and family members - yet are quite intelligent.

So, how do you decide who is high or low, or Stage 1, Stage 2. etc.?

For evaluation purposes, you have to have some sort of label. As long as the majority can agree on it, it's a useful tool for getting support and therapy. Nobody is going to say "Your son is wonderful and special, so he needs early intervention."

In other words, it's complicated.

I think that instead of focusing so much on terminology, let's focus on taking away the stigma. Celebrate what people CAN do, and understand what people CAN'T do, just like you would any NT person.
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amother
Mistyrose


 

Post Thu, Dec 24 2020, 1:44 pm
Have no fear; it will likely change shortly.

The DSM is a highly evolving compilation. They advocate it being rooted in science, but in reality, the pathologies have little scientific basis. Mental illness will not show up in X-Rays, leaving much room for error and fallacious presumption.

So the diagnosis is a sequence of random letters (AKA abbreviations) that may change often, due to lack of precision and human error.
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amother
Orchid


 

Post Thu, Dec 24 2020, 1:46 pm
FranticFrummie wrote:
I really don't like the term "lower and higher". I find it very insulting. It may have some accuracy to it, but it also carries a stigma. Who wants to be "lower"?

I think it would be helpful if they could stage it by number or something. I'm not sure how it would break down, but I'm sure if the scientists put their heads to it, they could come up with something fairly accurate.

On the other hand, I have a friend who is completely non verbal and Autistic. She is a brilliant writer, hysterically funny, very intelligent, and works from home as a video game tester. For her to form a word is like asking someone to push a boulder up a hill, using only one arm (as she says.)

Then there are people who are non verbal, like my landlord's son, who has the mental age of a small toddler. He doesn't even recognize his own name, and all attempts at assistive communication have failed. He just doesn't get it, or even care. He's very happy in his own world, and never bothers anybody.

Then there are "high functioning" people who are angry, anxious, and miserable all the time. Some people on the Spectrum are very violent towards caretakers and family members - yet are quite intelligent.

So, how do you decide who is high or low, or Stage 1, Stage 2. etc.?

For evaluation purposes, you have to have some sort of label. As long as the majority can agree on it, it's a useful tool for getting support and therapy. Nobody is going to say "Your son is wonderful and special, so he needs early intervention."

In other words, it's complicated.

I think that instead of focusing so much on terminology, let's focus on taking away the stigma. Celebrate what people CAN do, and understand what people CAN'T do, just like you would any NT person.
ATEC scores will give you a number of where you are functioning on the spectrum. Meant as a guiding tool for therapies.

Parents of low functioning autistic kids want them to be called that. Because they don’t want the neuro diversity movement lumping them with the Silicon Valley geeks and making autism seem like a Cool superpower when for these moms of kids who self injure, are aggressive, never toilet train, destroy property, elope, have seizures, etc, life is actually a living hell.
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amother
OP


 

Post Thu, Dec 24 2020, 1:48 pm
FranticFrummie wrote:
I really don't like the term "lower and higher". I find it very insulting. It may have some accuracy to it, but it also carries a stigma. Who wants to be "lower"?



I would say lower functioning would be anyone who needs help with many or most of their daily tasks in life.

Anyone who needs a little help with daily tasks, or none at all is higher functioning.

In this case someone with a brain of a toddler would be lower, and your friend who is non-verbal is higher.
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amother
Babypink


 

Post Thu, Dec 24 2020, 1:54 pm
Asperger's syndrome is specifically when somebody has high intelligence and verbal communication skills, but struggles in other areas such as non-verbal communication /social skills and sensory struggles. When will my daughter was diagnosed with HFA, I was told her diagnosis would have been Asperger's if it were still a thing.

I don't understand why they got rid of it from the DSM. (Definitely not because he was a nazi, that's news to me!)
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FranticFrummie




 
 
    
 

Post Thu, Dec 24 2020, 1:57 pm
amother [ OP ] wrote:
So what exactly is Aspergers? Because I know a lot of people with ASD or as you said HFA (High functioning Autism) and no one I know fits the criteria for Aspergers.

Most people with any type of Autism struggle socially but we are learned how to read facial cues and everyone I know loves connecting to others (despite the struggles), has a good imagination, theory of mind, and actually suck at structure and discipline although we likely need it a lot.


I'm going to go out on a limb here, and suggest that you may not have actually met anyone with Asperger's, or gotten to know them closely.

My horribly abusive ex has Asperger's, and refuses to admit it. He has absolutely no idea what other people are thinking, is not aware that he has no idea, and is consistently shocked that other people have different ideas. If I say "It's cold in here." he'll say "I'm not cold." Then I had to change it to "I FEEL cold in here, and you do NOT feel cold in here." Then he could understand. I always had to break it down for him.

The way you define Autism is the opposite of Asperger's. People with Asperger's cannot learn to read other people, because that part of their brain does not connect. They can learn to copy behavior, but they never acquire innate skill.

I also mentor an incredibly sweet girl with mild Asperger's. She's desperate to fit into her peer group, but cannot for the life of her understand why people say what the do, or if they are teasing or not. She doesn't get jokes. She doesn't know if a boy likes her or not. I gave her the book "Aspergirls" and she found it very useful.

She has a little brother with severe Autism and ADD, and they couldn't be more different. Her brother is very social, to the point where he constantly tries to climb into the laps of Shabbos guests - and he's a big kid!

Let me give you an example of the difference of approach between a person with ASD and a person with Asperger's.

If you give a person with Autism a rose, they may pull off the petals and feel how silky they are. They will test the thorns for sharpness, smell the rose for a long time, and possibly be obsessed with it for the whole day.

One day I was walking with my ex, and I saw the most gorgeous, perfect red rose I've ever seen. It looked like it had been photoshopped, it was that perfect. It smelled absolutely amazing. I told my ex "Look at that rose! It smells so good!" He refused to touch it, he wouldn't smell it. He actually backed away from it! When he saw that I was waiting for a reaction, he said "It's... um... it's ... very red." That was the extent of his interest.

It made me sad that I could never share beauty, music, or other interests with him. He just wanted to argue about politics all the time. If I tried to talk to him, he'd interrupt me and launch into whatever he read in the paper that day. He also loved tragedies where people died, and could talk about it for hours.

He never once told me I was pretty. One Shabbos I got extra dressed up for him, and when I came out of the room he said "Are you going out somewhere?" Can't Believe It

On the other hand, people I know who have Autism are usually fascinated with the world around them, and love to interact as long as it doesn't overwhelm them.
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amother
Orchid


 

Post Thu, Dec 24 2020, 2:04 pm
FranticFrummie wrote:
I'm going to go out on a limb here, and suggest that you may not have actually met anyone with Asperger's, or gotten to know them closely.

My horribly abusive ex has Asperger's, and refuses to admit it. He has absolutely no idea what other people are thinking, is not aware that he has no idea, and is consistently shocked that other people have different ideas. If I say "It's cold in here." he'll say "I'm not cold." Then I had to change it to "I FEEL cold in here, and you do NOT feel cold in here." Then he could understand. I always had to break it down for him.

The way you define Autism is the opposite of Asperger's. People with Asperger's cannot learn to read other people, because that part of their brain does not connect. They can learn to copy behavior, but they never acquire innate skill.

I also mentor an incredibly sweet girl with mild Asperger's. She's desperate to fit into her peer group, but cannot for the life of her understand why people say what the do, or if they are teasing or not. She doesn't get jokes. She doesn't know if a boy likes her or not. I gave her the book "Aspergirls" and she found it very useful.

She has a little brother with severe Autism and ADD, and they couldn't be more different. Her brother is very social, to the point where he constantly tries to climb into the laps of Shabbos guests - and he's a big kid!

Let me give you an example of the difference of approach between a person with ASD and a person with Asperger's.

If you give a person with Autism a rose, they may pull off the petals and feel how silky they are. They will test the thorns for sharpness, smell the rose for a long time, and possibly be obsessed with it for the whole day.

One day I was walking with my ex, and I saw the most gorgeous, perfect red rose I've ever seen. It looked like it had been photoshopped, it was that perfect. It smelled absolutely amazing. I told my ex "Look at that rose! It smells so good!" He refused to touch it, he wouldn't smell it. He actually backed away from it! When he saw that I was waiting for a reaction, he said "It's... um... it's ... very red." That was the extent of his interest.

It made me sad that I could never share beauty, music, or other interests with him. He just wanted to argue about politics all the time. If I tried to talk to him, he'd interrupt me and launch into whatever he read in the paper that day. He also loved tragedies where people died, and could talk about it for hours.

He never once told me I was pretty. One Shabbos I got extra dressed up for him, and when I came out of the room he said "Are you going out somewhere?" Can't Believe It

On the other hand, people I know who have Autism are usually fascinated with the world around them, and love to interact as long as it doesn't overwhelm them.
WADR I think the dichotomies you’re making are completely arbitrary. Obsession with a rose and total disinterest in a rose are both atypical responses to being shown a rose, but these 2 extreme reactions are not what define aspergers vs autism.
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nylon




 
 
    
 

Post Thu, Dec 24 2020, 2:06 pm
FF, that's simply not true. Especially for women, who are often very skilled at masking. The original criteria were biased towards boys. the theory of mind idea is also a lot more complicated than that.

Under the old system I would have been diagnosed with AS. Under the current one, I have ASD. The primary criterion for distinguishing the two was early language issues. If you didn't have them, it was AS. If you did, it was either PDD-NOS or autism (the criteria for autism were extremely narrow meaning many children were officially PDD-NOS even though they had significant challenges). The collapse between autism and PDD-NOS has been less controversial because everyone recognizes that the criteria for autism were so stringent.

The reason that these distinctions were abolished is that they weren't meaningful in the long run. Take a group of 18 year olds who were initially diagnosed with AS or HFA, and the outcomes don't track to initial diagnosis.

The other issue is that we talk about things like "high" and "low" and autism isn't a single spectrum. We can recognize extremes, but because each autistic person has a unique set of strengths and challenges it's difficult to draw a specific line. We may have criteria to do so in the future but at the moment we lack it.
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