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Trachea
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03 Sep 2022, 12:50 am

It is very disconcerting to me that so many people with autism know so little about autism. And this is mostly people who have been diagnosed as kids or adults who have known of their autism for a long while.

I regularly come to contact with people in autism communities that have no knowledge of the most common characteristics of autism and what they are called, let alone common co-morbidities and their effects. They are very distressed about completely normal things that they experience and blame themselves for being failures when they are perfectly normal autistic people! They seem to have little to no tools to work with their issues instead of against them. It seems like most therapy still aims to more & "better" masking and aims at them to be struggling through their life to fit in, instead of creating their own future on the basis of their strengths. It is not at all geared at the autistic individuals self-actualization and thriving.

How can this be? Is it just that their treating physicians are themselves unknowledgeable or are people just uninterested in understanding themselves? I find the latter very hard to believe. Almost everything I know that has helped me I have found out for myself from books and websites and following autistic creators, and its been lots of work. Why is there no simple place that collects all this important information for us in an easy way? How is there so much misinformation about autism still going around? And why in the hell are we still being pathologized?



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03 Sep 2022, 1:10 am

IMHO it is a majority/minority thing. If you are in the 98 percent majority it is easy to be ignorant of the small majority or just assume the way most people are=right, the small minority=wrong. As a small minority one has to go through so many obstacles that most don't it is easy to internalize the idea that you are wrong. When one is diagnosed with anything it is because it is or perceived to be a problem. When one is diagnosed with autism at a young impressionable age and it is presented as unlike most other people you can't do this and you can't do that is the self hate such a mystery?

On this site people are very knowledgeable about autism.


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Trachea
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03 Sep 2022, 1:19 am

ASPartOfMe wrote:
IMHO it is a majority/minority thing. If you are in the 98 percent majority it is easy to be ignorant of the small majority or just assume the way most people are=right, the small minority=wrong. As a small minority one has to go through so many obstacles that most don't it is easy to internalize the idea that you are wrong. When one is diagnosed with anything it is because it is or perceived to be a problem. When one is diagnosed with autism at a young impressionable age and it is presented as unlike most other people you can't do this and you can't do that is the self hate such a mystery?

On this site people are very knowledgeable about autism.


I'm not surprised at any self-hate I am very well aware of suicide rates, I think they exactly tell the story that people do not understand themselves at all. They think of themselves as failed NT's because that's what they are told and when trying to be something they are not is too hard they kill themselves because of exhaustion. Thats what I am talking about..

I don't think on this site people are very knowledgeable about autism either. Theres hundreds of posts of people saying WHY cant I keep a job, what is wrong with me. WHY don't I have friends what is wrong with me. WHY cant I sleep whats wrong with me.

Nothing is wrong you are autistic. People around them are telling them they should not be the way they are and they are believing them. It's horrible to watch..

Also I don't think autism is such a minority as people think. I think a lot of us are misdiagnosed or have other mental health and substance abuse issues that are in place to mask autism on purpose or accidentally in health care systems. Because of this belief that there is something inherently wrong with us and theres no healthy coping mechanisms and information from us to us readily available. And yes, a lot of us just don't make it long enough to even be diagnosed. I personally had probably 5-6 times it was very close before I started to understand and accept myself.



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03 Sep 2022, 2:04 am

Trachea wrote:
ASPartOfMe wrote:
IMHO it is a majority/minority thing. If you are in the 98 percent majority it is easy to be ignorant of the small majority or just assume the way most people are=right, the small minority=wrong. As a small minority one has to go through so many obstacles that most don't it is easy to internalize the idea that you are wrong. When one is diagnosed with anything it is because it is or perceived to be a problem. When one is diagnosed with autism at a young impressionable age and it is presented as unlike most other people you can't do this and you can't do that is the self hate such a mystery?

On this site people are very knowledgeable about autism.


I'm not surprised at any self-hate I am very well aware of suicide rates, I think they exactly tell the story that people do not understand themselves at all. They think of themselves as failed NT's because that's what they are told and when trying to be something they are not is too hard they kill themselves because of exhaustion. Thats what I am talking about..

I don't think on this site people are very knowledgeable about autism either. Theres hundreds of posts of people saying WHY cant I keep a job, what is wrong with me. WHY don't I have friends what is wrong with me. WHY cant I sleep whats wrong with me.

Nothing is wrong you are autistic. People around them are telling them they should not be the way they are and they are believing them. It's horrible to watch..

Also I don't think autism is such a minority as people think. I think a lot of us are misdiagnosed, or have other mental health and substance abuse issues that are in place to mask autism or because of this belief that there is something inherently wrong with us and no healthy coping mechanisms and information from us to us readily available. And yes, a lot of us just don't make it long enough to even be diagnosed.


I may be wrong but I interpret at least some of the "Why can't I get a job?" and "Why can't I get laid?" as not ignorance but a version of "Why me?". A person who is diagnosed with cancer(As a cancer survivor I know cancer is a wholly different thing than autism) knows as a human they are vulnerable to cancer but emotion takes over, similar thing with " Why can't I get a job?" I think.

Some people need more social interactions, others are more fragile and those autistics are more vulnerable to self hate.

All the suicide, suicide ideation, depression, and other mental and physical illness among us is both heartbreaking and infuriating to see.


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Trachea
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03 Sep 2022, 2:39 am

I have to kind of disagree on thing that people need as much social interactions... We as autistic find most social interactions that NTs find pleasurable as stressful. Stress causes us lack of sleep and meltdowns which cause more sensitivities and more suicidal ideations.

It's just shamed to be quiet, shy, "a loner", it is exactly the image of the worst people serial killers etc. Completely untrue and cruel stereotype. At best its seen as pathetic to be a hermit. And the socializing methods that autistic people do find comfortable and how much is enough of it is judged by NT standards to be bad for us when it's actually good for us to listen to ourselves and not people who are not like us.

Many of my autistic friends are very social in their way: they spend time talking online, gaming, and socializing live sometimes through common interests like board games or crafts or movies or music or maybe bar trivia. Even seeing our families and pets IS in fact socializing. We are still held to NT standards that this is not enough, even if it is enough for us, and we start to internalize that despite we *feel* we have been social enough for us, we have not. This creates a horrible dichotomy and stress, being pulled in two directions.

We are pushed to change ourselves socially so we can fit into the corporate landscape that doesn't accept us as we are, instead of encouraged and aided to create jobs for ourselves or pressuring the job market to change to accommodate us. Sure a bit of advancement is made on that, but very slowly and marginal. It even took this pandemic for people to okay working and studying from their homes despite we needing this for years and now as the pandemic is dwindling they are trying to remove this option despite it always was and still is AN accommodation a lot of us NEED.

We are pushed that one of the main reasons we need to exercise our social skills is to be able to partner up and produce offspring. But this is to date NT's, why wouldn't we want to date more inside our own community where we can be ourselves? We have often over-romanticized views of what romantic relationships are (as do NTS honestly, THEY ARE WORK) and our abilities to benefit from them are often so-so because of our NEED for alone time to decompress can be diametrically opposed to common views on what relationships look like. (Sex is great but so is a hamburger. Once you've had enough of the first to fulfill curiosities and so on, you might honestly start preferring the latter :mrgreen: this is once again a capitalistic marketing campaign on our primal LUSTS not our happiness and actual needs)

Many autistic people have alexithymia which makes it hard to understand emotions. Romantic relationships are often based mainly and solely on this constant exchange and talking of emotions. Very exhausting.. This problem goes partially away if we date inside the autistic community. But then we have not really defined and discussed what are ideal autistic partnerships like, what do they look like when they are not based on romanticized NT views on relationships. Theres not good information and enough of studies on the psychology and health of autistic relationships that are not based on masking.

There is still pressure to have kids and I'm 100% not saying you shouldn't if you want to, but I think it is very difficult and straight up bad for some people on the spectrum and they should not feel pressured into procreating or be made to feel there is something wrong with them for knowing their own needs and abilities would not lend to parenthood. It should be applauded to have clarity of self. And there should be specific communities and security made for autistic people who are getting older without next of kin by us in our communities because they are often misunderstood and treated badly in care homes that haven't got an idea on autism either like it would just disappear with age..

There is so much of these important things that I feel haven't really been discussed in and about the community nearly enough or at all, which also lends to the feeling that being autistic you are left on nothing; theres not enough of role models and models in general to plan life on. Modeling it on NT's lives is exactly what we see now: a recipe for depression and anxiety for so many people, a feeling that life isn't for them when that's not true.



Trachea
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03 Sep 2022, 4:15 am

Also I think it's very obvious that many people's knowledge on autism is seriously lacking when tons of autistic people still either don't know of or understand what a spectrum means or don't subscribe to it for their own deflection of autism or have internalized the pathologizing language of doctors.

It's hard to see many still identify through the markers of severe or mild autism, which are not really things. Similarly I kind of find it disturbing people want to use aspergers instead of as. To me they are like saying "I'm just a bit gay, but not fully" to try to distance themselves from the stereotypes of autism and create a bubble around themselves and distance to other autistic people and thusly creating hierarchies and tension inside the community. That leaves those who might get more negative attention by being less able to mask and those who need more accommodations out of the conversation and voiceless and excluded even inside their own community.



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03 Sep 2022, 6:51 am

the science and understanding of autism is actually very new and some of the very first individuals described when autism was 'discovered" are still alive or just recently deceased. The understanding of autism has improved and increased tremendously in just the past 5 years, and new information is coming in almost daily now, thanks to improved studies, previous understanding, and building on information already "in the system" or deeper and better studies of the base information available from less than one full generation ago. ( life span of one individual). It is difficult to see the improvement and increase of information and understanding from our point since we are sort of stuck right in the middle of it all, but unless we work hard to keep up with new information it is sure that many of us will be missing insights. I have a passion for learning about autism in older adults and spend hours online most days. I think unless it is an intense interest "special interest" most individuals don't feel compelled to study and search out more information, autism for many must be the same as having a certain hair or eye color, for example. Especially in those diagnosed at a very young age. It is just accepted as part of "who I am" and life goes on. Most people in general, not only autistic folks, simply don't have that much curiosity about self understanding and most seem to actively resist "improving" activities such as therapy, etc, perhaps feeling overwhelmed or simply not interested in such things.


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03 Sep 2022, 9:38 am

Introversion and extroversion are not autistic traits. In general the introverted autistic is going to have less trouble mentally then extroverted autistic because the introverted ones need less socialization. More socialization needed more chance of failure and resulting mental problems due to “not acceptable” socialization styles and more “pretending to be normal” .

I am an outlier with this thinking but the problem is not the terminology “severe autism” and “mild autism” per se but that the terms are used in a way that hurts autistic people. The difficulties of “mild autistics” are dismissed as are the abilities of “severe autistics”. There are different degrees of left handedness. People don’t assume the person who is less lefty is not lefty. Similar with people less sexually attracted to their own sex compared to the opposite sex. Some autistics have more intense traits then other autistics. That is normal diversity. But since autistics with milder traits are often treated as if they are not autistic it has become verboten in the autistic community to use “severe”, “mild”, “less” “more” terminology.

Knowledge of autism in the general community is bad often reduced to the conflicting retard and socially awkward genius stereotypes.

I can not speak for the autistic community as a whole but in my nine years here knowledge of autism is general is pretty high. :roll:


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03 Sep 2022, 10:45 am

autisticelders wrote:
Most people in general, not only autistic folks, simply don't have that much curiosity about self understanding and most seem to actively resist "improving" activities such as therapy, etc, perhaps feeling overwhelmed or simply not interested in such things.


I think you might be right. I have always been quite driven to understand myself, and my only frustration is that it took me so very long to figure out that I have been Autistic all along. I was 51 before I self diagnosed and got a formal diagnosis not too long afterwards.

This new understanding has unlocked so many mysteries and I'm certain that I will remain motivated to keep up to date with new developments.

I have gone from knowing very little about Autism pre-self diagnosis, to having what my diagnostician called an "extensive knowledge" in the report he did on me a few months ago. Since then I have continued in my interest with no sign of letting up.

It would be great if there was some way I could put this interest and knowledge to some greater use other than just understanding myself more. It automatically follows that I also understand other Autistic people more too due my increased knowledge about Autism. It would be so good if I could get a job in this field of special interest, whether that might be in research, blogging, therapy, counselling, anything at all. I guess there could be a lot of Autistic people thinking along the same lines, but although there may be a demand for Autistic people to work with Autistic people, I'm quite sure that there isn't much money or support from the wider public to create many positions like this for Autistic people.



Trachea
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12 Sep 2022, 4:19 pm

autisticelders wrote:
the science and understanding of autism is actually very new and some of the very first individuals described when autism was 'discovered" are still alive or just recently deceased. The understanding of autism has improved and increased tremendously in just the past 5 years, and new information is coming in almost daily now, thanks to improved studies, previous understanding, and building on information already "in the system" or deeper and better studies of the base information available from less than one full generation ago. ( life span of one individual). It is difficult to see the improvement and increase of information and understanding from our point since we are sort of stuck right in the middle of it all, but unless we work hard to keep up with new information it is sure that many of us will be missing insights. I have a passion for learning about autism in older adults and spend hours online most days. I think unless it is an intense interest "special interest" most individuals don't feel compelled to study and search out more information, autism for many must be the same as having a certain hair or eye color, for example. Especially in those diagnosed at a very young age. It is just accepted as part of "who I am" and life goes on. Most people in general, not only autistic folks, simply don't have that much curiosity about self understanding and most seem to actively resist "improving" activities such as therapy, etc, perhaps feeling overwhelmed or simply not interested in such things.


I understand it is new-ish, but the chore things I have known for 15years and people still don't know the basic things. What I don't really understand is how would someone NOT be interested in autism while constantly struggling with autism because of their lack of understanding of it and asking questions and being worried about it? To me that is obviously interest in it. It doesn't have to be a special interest, but things that affect daily life and their health and their well-being and survival surely interest most people. Thats what this forum is to many people after all.

Every day here someone who has either none (more understandable if its a fresh realization) to thousands of messages here writes about their experience with something that they perceive as "strange" or that they don't understand why they struggle with it and its like diagnostic criteria autism 101 stuff, not really ever knowledge that is "new".

I'm not saying its the persons fault by any means so no need to get :roll: with me. I'm saying It seems to me like autistic people are failed by and large completely by the medical field and by our own communities if we dont know the ABC to our own health and life, body and mind. I don't understand that, that it takes _so_ much work to find out about things about yourself that are normal and usual to almost all of us, and that people can go their whole lives without knowing what they experience is normal. I don't understand that the doctors either have or give no information to the patient being diagnosed?? It seems to me that if you had Parkinsons a doctor would tell you hey this might cause tremors because of your neurons do this, yet so many autistic people who have been diagnosed seem to have very little information on what is going on and how they can help themselves, despite desperately needing those skills and understanding..

I don't know, all I'm saying is we need something. Atleast a good impartial databank from us to us, that is simple to navigate with actionable things to do in emergencies and basic information on daily life that isn't written for doctors or parents or other carers of autistic people but autistic adult people and things that go beyond stim-toys, media representation and special interests.

I think these kinds of forums are fine and useful but the same questions keep puzzling people, things that should be things that people learn at the first moment they learn about themselves being neurodiverse. I have found the information on neurodiversity to be spread all over the place and difficult to piece together. Also the language and design of many pages are not very inclusive let alone fun or the advice actionable and clearly spelled out.

I am not speaking on behalf of any "improving" activities, I think those are mostly masking and bull. I am speaking on behalf of accepting and community building between neurodiverse people. But we can't accept things we don't acknowledge. And I think our communities are struggling to educate even inside our own community. How can we advocate for our needs when we don't know ourselves?

And again, here I think the people you refer to who are not interested maybe are the people who have good support and no "need" for self-knowledge, yet our suicide rates tell that there are many more who don't have good support and need self-knowledge desperately.. And that times come when those "high functioning" people suddenly do need more self-knowledge and it would've been better if they had it from the jump, like from the physicians, which could stop them from loosing skills, jobs, relationships, mental and physical health.

I would not dare try to speak on behalf of people who struggle more than me because I've been so close to complete catatonia in past years. And I know the thing that many autistic people don't want to acknowledge in this slowly changing hierarchical view of autism is that independent on how smart, socially talented and nt-"passing" you are right now, that you also could become so overwhelmed that you became catatonic and had to be cared for, if enough stress was put on you. I don't believe that this idea of "severity" is just a factor of natural tendency.

I believe there are outside factors that can both induce and lengthen catatonia and halter the ability to re-instate a natural equilibrium in an autistic person's body and clearing a path to outside communication.
(Locating and removing such stressors of course will not a) work like magic-it will still be years of recovery because the person is essentially in burnout
b) not remove any intellectual disability or other co-morbidities that affect an autistic individual
c) make it any less likely that they will have meltdowns as people in burnout are more sensitive for years)

But I believe more autistic people who are labeled "severe" could advocate for themselves much more and even have independence if anyone gave a s**t about giving them actual humane care based on their needs instead of piling on stressors from "care" that actually debilitates them further. There needs to be a healthcare reform for autistic people's needs. The only thing is the autistics who should care don't care because they think they are not going to face these issues (although they do) and NTs certainly don't care because they don't know we exist because people who are "passable" don't want to state their ASD for fear of exclusion and discrimination so their views on autism is scewed.. This a big complex multi-layered thought prong but I'm just so sick of being scared.

I'm sick of being scared that If I try to go get help from healthcare I will be institutionalized. I'm sick of being scared that If I try to go get help from healthcare they will disbelieve me because I show no emotion or label me as an addict because I stim.
I'm sick of being scared that if I try to go get help from healthcare they will say they would love to help but they have nothing to offer. I'm sick of people saying yes, you're autistic but not knowing what it means. I'm sick of people telling me that I should go get help without realizing there is no help for us. It's a kafkaesque, nightmare-inducing system.

If we don't change it, who will? Nobody cares about us if we don't. I believe we have to change these things.



Trachea
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12 Sep 2022, 5:32 pm

rse92 wrote:
You have some nerve.


I would rather you not comment to me at all since you are trying to constantly bully and criticize me without ever addressing anything that is spoken about, I think that is stupid, and mean. I'm not here to a) socialize with you or b) trying to change anybodys views, unlike you.

I am here to speak my voice because I never hear the things I think and I feel I have a right to speak.

You are making me right now wanting to leave this whole site and be alone again and not talk at all. That makes me feel very angry and frustrated because I want this to be a safe space for autistic people. SO LEAVE ME ALONE. I can speak how I feel. I'm not speaking on anyone else.



Trachea
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12 Sep 2022, 5:35 pm

FORGET IT im leaving, im not going to be bullied again.



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12 Sep 2022, 7:09 pm

I don't understand the idea of expecting others to have the same if not more knowledge about autism.
More so outside the autism community, or basically anyone uninvolved directly with autism.

It's something I already figured about being different amongst human societies -- the ignorance of others and the degrees of how unwilling others to rectify that.
The two sided gaps of empathy and how one side claims it's one sided and it's not them who should take the blame.


Hm.

My knowledge of autism is at least... "Fair". And just not limited to the aspergers variety.

Yet as much as I know a lot, I care a lot less.
Because I'm not an autism advocate with visions about humanity or autistics or families of autistics.

Just another human with aspirations who advocates for herself, who happens to know plenty about autism, happened to be autistic and therefore involved directly with autism.

Thus my motivation to learn and know about autism is not to learn about autism -- it is simply about being directly involved; namely learning to know myself and how much of it applies.

And, I did not limit myself to autism knowledge alone -- there are other toolboxes, lexicons and concepts out there that autism and autistic communities alone cannot accommodate or explain me.
I do not rely on the knowledge of autism alone to ask the same questions.

I did not learn about autism to be with other autistics,
I did not learn about autism with the intent to contribute except spouting my own thoughts and experiences, let alone join some community hierarchy if it exists.
I did not learn about autism to tell it to the world, to my family and friends what it is about, or to just about anyone who actually ever bothered or not.


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Last edited by Edna3362 on 12 Sep 2022, 7:48 pm, edited 1 time in total.

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12 Sep 2022, 7:48 pm

I think that knowledge about autism can be an individual thing. There are people on the spectrum who want to learn everything that they can about their condition (I fit into this category). There are also people who would rather not think about their autism or want to learn about it.


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12 Sep 2022, 8:08 pm

Trachea wrote:
FORGET IT im leaving, im not going to be bullied again.

I hope you're ok, Trachea. If you're feeling bullied by rse92, then please report his posts to the mods and they will deal with it.

You're very much welcome on WP. Don't let anyone drive you away.


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