S/O Why the word aspergers should be abolished.

amother

Thu, Dec 24 2020, 6:10 pm

number wrote:

Absolutely. Lately though I’m hearing the term neurodivergent used a lot. Was that always a thing? Adhd and autism lumped together?

No - it's a new thing. Autism and ADHD were always looked at as bad and disabilities, people were even killed or hidden away. Nowadays people are understanding that unlike other mental illnesses such as anxiety or depression - Autism and ADHD is a completely different wiring in the brain and there's gifts and strengths to that. And maybe those should be lifted up and respected.

Maybe we can learn how to live in a society that thinks differently and still be able to use our different ways of thinking to make our lives, our jobs, and our relationships better. Maybe there's some value and beauty to the energy people with ADHD have and the honestly and openess of people with autism.

Instead of feeling like I'm wrong, and I'm bad we can feel like I'm different. That's okay. I still need to learn how to understand the world around me and get along with others and function in a society that doesn't think or feel like me - but it's okay that I think and feel different. People in my life appreciate me for me, my "autistic" traits MAKE me ME! Make me different!

Neurodiversity is a new word that explains this. I wouldn't want to live with my ASD - I can't imagine living my life and see the world completely differently. I feel everything and expirience the world so much stronger and more vivid than most - I would hate to lose that.

A lot of people who work in mental health are getting behind this idea. Different is okay - still you need to learn how to function in society. If you are ADHD getting a job that allows you to use your energy.

A friend of mine with ADHD is a theraputic horseback therapist. This is a great use of her energy. She could never work in an office and that's okay. That's not bad.

In the past we would of said if someone can't do x there's something wrong with them. Sure she can't work in an office but she can do a lot of phsycial intesive high energy jobs that loads of other people couldn't handle.

imorethanamother

Thu, Dec 24 2020, 6:22 pm

amother [ OP ] wrote:

Why not? I personally associate the term aspergers with people lower functioning - similar to FF's ex DH which is what I was told as a child all I could be was. I also associate it with the terrible person who it's named after.

Aspergers is associated with specific traits, while ASD or Autism can mean a range of different things. When you picture someone with aspergers it's usually someone like FF's ex DH. When you hear ASD it can mean anything really - it's as vague as saying depression or anxiety. It is totally different from person to person.

Also medically it's all called ASD now.

Everyone I met who was diagnosed with Asperger's was high functioning. Could hold a job, could do self help skills, could graduate school with a degree.

Everyone I know with autism is extremely low functioning, including my son. I have no idea why you'd want the same diagnosis as him.

As an aside, since everyone is now "ASD", it waters down the diagnosis. It's harder to get services and those services are often not appropriate for most on the spectrum, because of how generic the term has become.

nylon

Thu, Dec 24 2020, 8:57 pm

FF, I don't know where you learned that people with Asperger's don't have empathy but that is flatly untrue. In fact it's a really harmful stereotype. You seem to be generalizing a lot from your ex. There are a lot of stereotypes about people with AS/HFA that are based on a very specific type of person, usually a man. This is what leads to things like Simon Baron-Cohen's idea that autism is just an "extreme male" brain. I also know people whose diagnosis would previously be described as HFA who lean more towards that picture. In fact some people with an Asperger's type profile have very intense emotions that they have difficulty interpreting and expressing. About half of people with ASD have alexithymia--difficulty identifying and interpreting emotions. They know they feel *something*, often quite intensely, but they cannot name it. Add to this the difficulty in identifying emotions in others, which is an important trait in autism, and autistic people then have difficulty in producing an appropriate response.

Many people with autism or Aspergers have difficulty with expressing empathy appropriately. That is not the same thing as not having it. For example, I had trouble for a long time with giving advice that was too logical or blunt. It was not that I did not have empathy for the person, it was that I didn't understand when or how to express it. I would assume they wanted practical assistance in dealing with a problem when what they wanted was commiseration. This is a skill that many autistic people can learn to some degree. In fact one thing researchers have learned is that autistic girls and women tend to have stronger skills in identifying emotions than boys do. This may not be biological; it may be because these are skills that are heavily emphasized for girls. This is also why girls and women are better at masking and are less likely to be diagnosed younger. Even today, many girls who have ASD but lack early language deficits are not diagnosed till puberty or sometimes at all. When I first asked about an AS diagnosis I was told "girls almost never get that".

One of the problems with functioning labels is that it leads to bias. It can lead people to overlook strengths in "low functioning" people and dismiss challenges in "high functioning" ones. For something like a disability determination we have to make a rough approximation, and there the most important factor is how it affects someone's work life. But we know that that rating is only an approximation that doesn't really describe the person completely.

amother

Fri, Dec 25 2020, 3:41 am

imorethanamother wrote:

Yes and no. According to any article I read on aspergers and according to the comments here DH and I wouldn't apply for it. We're too high functioning. Now where do we fit in? What are we called?

That's the issue here. The terminology is old and doesn't make sense. What's considered high functioning and low functioning? I know in Israel me and DH applied and received disability and all its services and we did as children in the US as well. So I'm not sure where people aren't getting services.

Everyone mental illness has a large spectrum. Do you feel people with very mild anxiety or depression also don't receive needed services?

Also you say you don't know anyone high functioning. That's very unlikely true. My disability is invisibe. I went to a mainstream high school in Brooklyn, I had friends, I was dance head, I got good grades, went to a standard seminary, etc. I looked like everyone else. I had the right bag and shoes. Even the things I was slightly obsessed with were "normal" makeup and fashion. Today I'm a personal shopper and I do really well.

Chickensoupprof

Fri, Dec 25 2020, 6:21 am

Quote:

Of all the research I've done, this is still the most comprehensive description I've ever read. It's fully sourced in the footnotes. Of course not every single person is going to tick every single box, but it gives you a good overview of the syndrome.

Two of the main differentials between ASD and Aspergers, is that people with Aspergers have little to no Theory of Mind or empathy. People with Autism can be quite aware of other people's thoughts and feelings, and can relate. The lack of empathy is so pronounced in Aspergers, it was originally considered a psychopathy.

The difference is that true psychopaths are aware that they are psychopaths, they just don't care. People with Aspergers are unaware of their behavior, and how it affects others. If pointed out, they often won't see it, and may even deny it. (I don't mean to imply that they are insane criminals, CVS. I'm just talking about the diagnostic label.)

I understand that it is problematic, at best, to have a syndrome named after a Nazi. I would like to see it changed, but still kept separate from ASD.

From all the research you've done as not a scientist in the psychiatric field you should simple pardon my French: keep your moth shut. This is totally untrue en misleading information and it's dangerous and it is really stigmatizing. It's the equivalent of saying that Jews are rich.

Aspergers is abolished in the DSM not because it was not fancy or so but because the scientists in their research found that autism is way more widespread and is an umbrella term. This because people with PDD-NOS, Asperger, ''classic'' autism was different in their own ''diagnosis'' let's say. I got Asperger, as my first diagnoses why? Because I had a high IQ, however, I HAVE A THEORY OF MIND. I can show you my reports where it is all written down. But because once they gave also the diagnosis Asperger to someone who will never be independent you can have a good treatment for someone. THAT is why they made the gradations.

Seriously I can't emphasize how hurtful and stigmatizing this is to read. I literally had 7 years of bulimia, developed a personality disorder (avoidant psd) , depressions and anxiety because I felt I was a psychopath because I took it literally that ''I don't have feelings''. I got abused because I thought my boundaries don't count because I'm a not worthy person because of autism. I was so preoccupied to please and to make other people happy and welcome that it literally made me feel sick. I literally ask my husband 50 times if he is ok if he needs something and I'm always afraid he is angry at me.. Because yeah sometimes I had the experience that I did something wrong when I did not know it.

It is again really hurtful to say this, and you should stop this. Really. It is not true and because FF, you have huge respect on this forum and you are a beloved member and I love you too also because you are my sister because we are all sisters here, you should not do this. Furthermore lots of things in autism is too learn. For instance, I was for years not aware of my sensory sensitivity which causes meltdown. And these meltdowns can lead in to furious anger, tiredness, sickness, anxienity and more... if I don't take action to calm myself down. I learned that when I fly to my inlaws I need to have the next day more rest than my husband, for years I didn't listen to my needs because it was not important what I felt, because I was a 'cancer autist' and I was nothing better then a child rapists or a baby rapist, and I had to be normal it was a cancer tumor which needed to be cut out, I was not even worth to think about myself because I felt I was a psychopath. I did EVERYTHING to proof myself as loving. Caring or wanted. Before I met my husband I slept around it felt empty it was empty but it also felt that ''no one wanted me because I'm a filthy autist'' and onyl good for that and hoping I could find some love or proof that I'm lovable

And guess? I'm loving, there are children who love that I babysit them, my husband loves me, he is not with me because I have big tits or I have money (don't have anything). I have loving friends, who really tell me: ''I love you girl, you are a tzadeikes''. I babysit on a boy with severe behavioural issues and I'm one of the only ones to calm him down. Yet I find it hard to align with adults. And I had in my life so much hurtful comments about my behaviour which was so depressing. I always wanted to do the right thing. The good thing, to be good a nice girl, I was so osbsessed with that, I hated when I did something 'wrong' and I got a comment it felt so hurtful I got angry or cried for hours and days,weeks,months later I was still hurt by the fact I missed a cue and that caused a comment, my meltdowns as a child, teen and young adult which could lead some time to a tantrum. I got judged by that ofcourse but I still feel very guilty and still hate myself for when this happens. And still feel that I'm a part of amalek which needs to be distroyed.
But this behaviour FF, got me that I avoid everything which could be lead to snaggy comments, being obsessed in being good. Wanted to become better. I'm now in a heavy therapy to deal with this pattern. I got the diagnoses of Asperger but now they changed it in ASD but the mildest gradation, I always tried myself to be loving and now I slowly begin to see I'm loving. I'm married, I'm frum I have friends I'm becoming iyh a coach... I need to learned that because I hated my self so so much. Don't talk about ''us'' but with us...

amother

Salmon

Fri, Dec 25 2020, 6:29 am

Chickensoupprof wrote:

Quote:

FranticFrummie

Fri, Dec 25 2020, 9:27 am

I have a feeling like there is a lot of defensiveness going on in this thread. I understand that many of you have felt attacked for being different, for your entire lives. It's understandable that you feel like I am trying to attack you, but I promise you I am not.

Every person I know with Asperger's, including my ex, is highly intelligent. I would say well above average. They work hard at skilled jobs, pay the bills on time, learn Torah diligently, and would never dream of breaking halacha (rigid thinking for the win!) In many ways, they are better than a lot of NT people I know.

I have yet to meet someone with an Asperger's diagnosis who is considered "low functioning" in terms of daily activities. Now if you want to talk about "emotional IQ", that is very different, and that is where they don't measure the same as people with ASD.

I know several NT women who are happily married to men with an Asperger's diagnosis, and I am very fond of their husbands. These men are wonderful to their wives. Of course not all people on the spectrum are jerks! I never said they were. I just happened to end up with a bad apple.

I'm willing to concede that some people with Asperger's may feel empathy, but cannot express it. I've also been told by people with Asperger's that they do NOT feel empathy. One guy told me that he keeps a Rolodex in his head, and when a response is needed, he flips through his mental card file, to find the card that says what is expected of an NT person. That's not feeling, that's coping and masking. He's not ashamed of the fact. Actually, he's quite proud of how clever he is at "passing for normal."

I knew him for years and had no idea he had Asperger's, until he told me! His wife adores him, and cherishes him BECAUSE of his Asperger's gifts, like reliability, stability, and the ability to put up with her moods without becoming enmeshed. The successful marriages to neurodiverse partners are because the women were looking for those traits specifically. If you are expecting someone ND to behave like an NT, that is unfair and you'll only make each other miserable.

I didn't come here to fight, I came here to discuss.

Shabbat Shalom

amother

Coffee

Fri, Dec 25 2020, 9:46 am

Chickensoupprof wrote:

Quote:

Can’t like this post enough!!!!

nylon

Fri, Dec 25 2020, 12:46 pm

Love your post Chickensoupprof!

As I said the reason AS was abolished is the lack of a criterion that is stable over time. We can intuitively see that some people on the autism spectrum have higher functioning levels in a variety of domains, but it's difficult to translate that into meaningful criteria. Early language delays are not fully predictive. I know children who were nonverbal at three, but caught up to their peers in verbal skills and would appear to have a more Asperger's type profile at 10 or 12. the old criteria were also very focused on verbal skills and pragmatic language. It's become more obvious that autistic people have challenges across a variety of domains including sensory processing, executive function, and other social-emotional areas.

There's another issue within the autistic community, that people cling to Asperger's as a label that is "better" than autism. this cuts both ways: sometimes you will see someone who is insistent that they have Asperger's and not autism, and you'll also see people who react to an Asperger's type person with "but you can't be autistic!" (which in the past has led me to just say I have AS because it forestalls that conversation).