Autistic peoples knowledge on autism

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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?

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 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 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.

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.

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.

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 ret*d 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.

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

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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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.