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LoveNotHate
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23 Nov 2019, 7:45 am

What I find odd is how members rarely talk about their underlying condition.

An autism diagnosis is based on behavior.

However, there's an underlying condition causing this behavior.

For me, it's brain functioning problems (brain damage).


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Dear_one
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23 Nov 2019, 8:49 am

Just as the rich get richer, there is a division in the absorption of help. One old proverb concerns a conversation between a wise man and a fool. You might expect the fool to gain more information from the exchange, but the reason he is a fool is because he has not been absorbing information all his life, while the wise one is always noticing new details.



glider18
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23 Nov 2019, 9:54 am

LoveNotHate wrote:
What I find odd is how members rarely talk about their underlying condition.

An autism diagnosis is based on behavior.

However, there's an underlying condition causing this behavior.

For me, it's brain functioning problems (brain damage).


I had come to realize early on in my life that something was different about me. I couldn't quite pin it down. I had a best friend, but I never desired to get around a bunch of my peers. Why? I felt awkward in those circumstances. Besides finding it difficult to interact with these people, all the things going on (noise, conversation, etc.) caused me anxiety ... too much sensory stimulation. In group gatherings (parties, family reunions, etc.) I felt like I was looking into these things from a window ... like a barrier that kept me from interacting in the normal fashion. Yet I didn't want to interact to begin with.

I noticed that I had a tendency to eye dodge when talking to people ... even family members. To look someone in the eye felt awkward, so I would look away a bit.

Although I felt emotions, I always found it difficult to express them. I still do.

There's more, but that is a little about my challenges.


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magz
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23 Nov 2019, 10:16 am

LoveNotHate wrote:
What I find odd is how members rarely talk about their underlying condition.

An autism diagnosis is based on behavior.

However, there's an underlying condition causing this behavior.

For me, it's brain functioning problems (brain damage).

I suppose most of us don't have identifiable underlying condition, at least with current knowledge of neurology and diagnostic practices.
While the criteria are behavioral, the clue here is altered sensory and social information processing.
In my case AS just runs in the family - diagnosed in the youngest generation, less diagnosed but clearly present among older individuals. So, most likely, genetics.


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Fireblossom
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23 Nov 2019, 11:07 am

For me personally, this forum does both. There was a point when WP was a very hostile enviroment so I left for a while (well, I also left to save time, but without the hostility I would've found myself some other way to save time), but since it did some good too I came back about half a year later to see if things had gotten better. The site is still rather poisonous on some parts, but has gotten less hostile... or maybe I'm just ignoring the right posts and people.

As for the advice, well, if you ask for advice or tell about your life in general on a forum like this, it's very likely that someone will comment on it. This is a forum after all. If you want professional advice, ask it from a professional. If you just want to rant, get a diary or write a post about it, but don't read the comments.



Roboto
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23 Nov 2019, 12:06 pm

Dear_one wrote:
Just as the rich get richer, there is a division in the absorption of help. One old proverb concerns a conversation between a wise man and a fool. You might expect the fool to gain more information from the exchange, but the reason he is a fool is because he has not been absorbing information all his life, while the wise one is always noticing new details.

The problem is the number of fools giving out bad advice because they happen to be in a time of good luck in their lives, but thinking it's all their own doing. This disregard for the element of luck is what drives so many autistic people to depression... And those who are struggling and depressed simply get in to arguments with these posters to tell them that their simplification doesn't apply 100% of the time and the two get in an argument for 2+ pages... What a waste. It's like watching two people in wheelchairs argue about how to become a sprinter in the Olympics...

There are some people here with a wealth of life experience and knowledge and I notice their posts and they are mostly skipped over and ignored. Those who are more awake to their own brain types will likely understand what I'm saying. Those who post the most tend to crowd the good and informed advice and knowledge with their oversimplified views of the world and an arrogance about their own situation and they take over the threads... They say things, that if you've been in counseling with an expert on autism, you'll know are incredibly outdated, harmful and is the crap an ignorant guidance counselor at school would say...

Fake it until you make it is not an approach that works for the autistic community...



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23 Nov 2019, 12:10 pm

It has been an incredible help to me. One of the biggest helps I have had for a long time.


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Dear_one
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23 Nov 2019, 12:16 pm

^^ 2 People are notoriously bad at distinguishing luck from skill or self-importance. Good point on the proliferation of bad advice, now that there are no publishers to filter out the dross. I see a huge number of instructional videos showing someone's first success, and almost none by those with years of experience. There are also professional instructions that assume mastery of the craft, and focus on how to achieve huge volumes.



Roboto
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23 Nov 2019, 12:18 pm

Fireblossom wrote:
For me personally, this forum does both. There was a point when WP was a very hostile enviroment so I left for a while (well, I also left to save time, but without the hostility I would've found myself some other way to save time), but since it did some good too I came back about half a year later to see if things had gotten better. The site is still rather poisonous on some parts, but has gotten less hostile... or maybe I'm just ignoring the right posts and people.

As for the advice, well, if you ask for advice or tell about your life in general on a forum like this, it's very likely that someone will comment on it. This is a forum after all. If you want professional advice, ask it from a professional. If you just want to rant, get a diary or write a post about it, but don't read the comments.


I want people who need help to not seek it here. I want people who need help to not get bogged down into 20-30 posts/day here arguing with idiots with zero knowledge on what they're talking about.

This site hasn't been updated in more than a year. There's almost no help or information on finding professional help. It's kind of a sad place and I feel for those posters who are so lost and spending so much time here only reinforcing their own unhelpful points of view.

Please understand I'm not posting this for myself. I am incredibly fortunate to have an amazing support system around me and am working on tweaking a few of the unhelpful conclusions that are in my brain that sometimes drive me down a less than ideal path. I just feel for others in the community who are reading, and taking in some really harmful ways to look at things. It's also sad to me that some of the very helpful things I've learned, and tried to share, are negated by posters who have an addiction to hitting "submit" so that they can read their own words...

Never have I seen "Let me interrupt your expertise with my enthusiasm" more so than this forum.



Dear_one
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23 Nov 2019, 12:37 pm

Roboto wrote:
Never have I seen "Let me interrupt your expertise with my enthusiasm" more so than this forum.

It looks no worse than average to me that way. Even professional journals are mostly froth.
I saw a viral story recently about someone who sat beside a non-verbal child on a flight, and successfully taught both child and parent to use pointing at symbols to communicate. They then lamented their return to academic life, with fakers all around. Real thinking is so slow that people learn, for instance, to trust people in medical coats, but that trust transfers to actors dressed as doctors. People cheat their way through school, and then fake entire careers. John Cleese, when discussing the Dunning-Kruger syndrome, estimates that between 5 and 10% of "experts" actually understand their field.



magz
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23 Nov 2019, 12:47 pm

Dear_one wrote:
John Cleese, when discussing the Dunning-Kruger syndrome, estimates that between 5 and 10% of "experts" actually understand their field.

John Cleese making an expertise on the Dunning-Kruger syndrome sounds quite meta :lol:


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Amity
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23 Nov 2019, 1:09 pm

When I first started reading threads here I was confused by the communication style. Also that new members spoke as freely as long term members, people spoke directly and no one got preferential treatment, there weren't any paid professionals to give free advice.
I held off on posting as I was having a lot of difficulty communicating at that point.

When I did ask for advice I found that although I got signposts from replies, I did not usually get the answers I was hoping to and realised what I needed at that time would only come from a paid professional. I wasnt in a position to afford this.

So I read old threads and found WP to be an encyclopedia of lived autistic experiences. At this time I learned more from searching old threads than I did from active threads, as each persons autism is unique to them and the likelihood of connecting on multiple levels with current posters was and still is slim.
If you've met one autistic person, that's exactly and all that has happened... you've met one autistic person.

This realisation means that instead of internalising the ignorance about autism that perseveres in general society, I aim to tolerate as a minimum standard, if not accept the spectrum of presentations and experiences of people with autistic spectrum conditions.

The key to effective participation on this site became clear to me shortly after I first joined, we are peers, we remain equals or the whole thing erodes.

My space to participate in this community, as I am, is just as valid as anyone elses... with any community to remain viable there must be balance regarding give and take.



SharonB
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23 Nov 2019, 1:16 pm

The Forum helps me.

The conflict is hard, but is interesting to me to "practice" (from afar).

I find far more good apples than bad apples here and of course I think of the bad apples as good apples with sometimes hurtful viewpoints. It's hard to see a very vulnerable person being accosted with hurtful viewpoints, but I can lend my voice also and hope that vulnerable person knows enough to take what they need and leave the rest. If I felt the hurtful outweighed the helpful, I would leave, b/c I do not have time or energy for that. I need my spoons.

(And there's the Haven for the very vulnerable, which I've seen peers helping to keep safe.)



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23 Nov 2019, 1:54 pm

This forum has proven helpful. Putting difficult to express concepts to written words is important e.g., the lessons of those awesome creative-writing instructors (some of us experienced) love their students to learn, and retain over a lifetime.

I've found it extra helpful to learn of those rare like-minded WP members who are receptive to grappling with those difficult issues in new and refreshing ways e.g., issues on developing and maintaining friendships.



Dear_one
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23 Nov 2019, 2:19 pm

Amity wrote:
<snip>

When I did ask for advice I found that although I got signposts from replies, I did not usually get the answers I was hoping to and realised what I needed at that time would only come from a paid professional. I wasnt in a position to afford this. <snip>.


See above - your odds of getting help from a pro are only about 10%. The best counsellor I've ever found, who I saw monthly for a decade, completely missed the connection between the onset of my sleep disorder and my concurrent mood changes, which is not even an AS specialty. Her value was primarily as a willing, safe listener who could answer a few questions about "normal" states, and generally encourage me to keep exploring. The single most helpful thing she said was that she couldn't use superior logic to talk me out of depression, and she didn't even remember saying it.



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23 Nov 2019, 4:16 pm

Amity wrote:
When I first started reading threads here I was confused by the communication style. Also that new members spoke as freely as long term members, people spoke directly and no one got preferential treatment, there weren't any paid professionals to give free advice.
I held off on posting as I was having a lot of difficulty communicating at that point.

When I did ask for advice I found that although I got signposts from replies, I did not usually get the answers I was hoping to and realised what I needed at that time would only come from a paid professional. I wasnt in a position to afford this.

So I read old threads and found WP to be an encyclopedia of lived autistic experiences. At this time I learned more from searching old threads than I did from active threads, as each persons autism is unique to them and the likelihood of connecting on multiple levels with current posters was and still is slim.
If you've met one autistic person, that's exactly and all that has happened... you've met one autistic person.

This realisation means that instead of internalising the ignorance about autism that perseveres in general society, I aim to tolerate as a minimum standard, if not accept the spectrum of presentations and experiences of people with autistic spectrum conditions.

The key to effective participation on this site became clear to me shortly after I first joined, we are peers, we remain equals or the whole thing erodes.

My space to participate in this community, as I am, is just as valid as anyone elses... with any community to remain viable there must be balance regarding give and take.
Very well said!


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