The Lack of Attention Sometimes

[ModerateMeter]

Hi, I am new to this site..
Also very new to the autism world, but I have worked with several individuals on the lower-functioning end of the spectrum. I am here today, to discuss something objectively sort of important..

I notice with a lot of videos about autism and the people on it are generally the ones explaining the disorder. While this makes sense, these videos usually aren't rising too much attention and are sort of un-engaging to view IMO and I simply wish there was a little more care put into the content of autism.. there aren't a lot of widely recognised YouTubers or celebrities that are diagnosed and a lot of sites (including this one) can be kind of frustrating from a design point of view. (Simplistic, yet unclear at times) If you don't know what I'm talking about exactly, look at ADHD for example. If you look for a video on ADHD, you're more likely to find more polished, highly-edited, well sourced and more engaging content engrained into it all.

I'm not disregarding the research that has been put into autism (since there's a lot that keeps changing) but all I'm saying is that I think autism deserves a more standardized platform, with more popular influencers talking about it.

Let me know what you think of this.
Thanks for reading

 

[Gerontius]

Hello, and welcome to the forum--


Not sure about the whole video thing, and not really sure what to feel about influencers yet.

Now the interface of this website is FINE, thank you very much! Simple is a good thing. Not everyone spends money on a fancy computer or tablet; I am on this with a 2014 iPad running OS 9.3.5. because I don't buy new electronics. Too pricey. This is one of the few websites that displays properly. That's not a huge problem; I built it as a bare-bones makeshift option (keyboard case & scabbed-together charger replacing a broken laptop) but a lot of autistic people haven't got a lot of money, and there's also the sensory side of too flashy or too busy interfaces on websites. These "engaging to view" videos are very literally painful to watch.

This website also keeps NT's from getting in here & piddling in the wading-pool, so to speak.

Autism is a tricky thing. If it gets all hyped up and popular like ADHD, I'm sorry but I think it will end up hurting people. Look at what TikTok is doing with mental illnesses; they're turning them into popular hashtags and creating oceans of content that end up making others think everyone with a mental disorder is faking it.

So--I mean, a lot of folks value that kind of content, though, so if you're doing it fine for you, but I am having a hard time seeing how it's a must for the community. Autism awareness frequently carries that side of "othering" us. All I want to do is blend in so people leave me alone.

 

[Wolfgangus Faldestolius]

The last thing we need is anyone "popularising" it

 

[Gerontius]

The last thing we need is anyone "popularising" it

Popularizing frequently equals profiteering and whatever happens, it's going to end up hurting autistic people.

But hey, at least neurotypicals will think the Web site looks good.

 

[Ronald Zeeman]

This site has been pretty good no heated debate everyone respectful, hopefully this is an Aspie trait. I suspect it is I frequently go to Peter Woit's Blog which is full of math and physics Aspies. similar to this Quiet tasteful debates.

 

[Crossbreed]

If you don't know what I'm talking about exactly, look at ADHD for example. If you look for a video on ADHD, you're more likely to find more polished, highly-edited, well sourced and more engaging content engrained into it all.

ADHD content has to compete for... attention.

 

[Nitro]

Hi, I am new to this site..
Also very new to the autism world, but I have worked with several individuals on the lower-functioning end of the spectrum. I am here today, to discuss something objectively sort of important..

I notice with a lot of videos about autism and the people on it are generally the ones explaining the disorder. While this makes sense, these videos usually aren't rising too much attention and are sort of un-engaging to view IMO and I simply wish there was a little more care put into the content of autism.. there aren't a lot of widely recognised YouTubers or celebrities that are diagnosed and a lot of sites (including this one) can be kind of frustrating from a design point of view. (Simplistic, yet unclear at times) If you don't know what I'm talking about exactly, look at ADHD for example. If you look for a video on ADHD, you're more likely to find more polished, highly-edited, well sourced and more engaging content engrained into it all.

I'm not disregarding the research that has been put into autism (since there's a lot that keeps changing) but all I'm saying is that I think autism deserves a more standardized platform, with more popular influencers talking about it.

Let me know what you think of this.
Thanks for reading

Since we don't exactly offer what you are looking for, care to tell me what changes you feel need made?
Keep in mind that many on the autism spectrum are not fond of any changes for any reason.
I was here as a noob admin for a software upgrade, and let me tell you, at times, it was a difficult event for many here. Some of which as a result of it left, never to return.
Wasn't all that good for business at the time, but was a necessary evil in order to utilize safer software.


As far as video content on other hosting platforms, I'm sure most who dare to put themselves online are not professional actors or actresses, have perfect public speaking skills, own the best of recording equipment or for that matter have the time or abilities to "polish" their work to exacting studio grade standards.

Now as far as membership is concerned, many choose not to put their real names out there for many reasons including privacy concerns.
Some don't want the stigma involved by exposing their condition, while others are likely very introverted and have no desire to stand on center stage under the watchful eyes of those that frequent the internet looking for a new place to frolic. (troll)
We do have some mad troll fightin' skills and killer tools here, but the all volunteer staff really doesn't need to test them either, so flying under the radar might be our best bet at this point in time

You found us, so we can't be that hidden, can we?

But I digress because I fear I might just be rambling.

Now here's another thought for you
If you know what it takes to spruce up a video about the autistic experience and can do it, put something online, share the link here and let's have a gander at it.

Who knows, maybe we will all learn something from you!

 

[Crossbreed]

Also, there are four major competing views about autism:

1. that the whole spectrum is defective,
2. that the whole spectrum represents a healthy expression of neuro-diversity,
3. that autism occurs in both benign [ASD1] & aggravated [ASD2/3] forms, and
4. that only ASD2 & 3 are really autism.

 

[Suzette]

I am not sleeping well so I may be a bit brusque, but I have to ask; do you want to be entertained or informed?
I suppose Autism can do both. But if you aren't finding what you seek, maybe your goal should be to create the content you want to see.

 

[Qoyote]

I'm not a veteran here but when I think of an average Autism Forums member I think of someone over 40 who takes the media with a grain of salt and wants to be left alone, not a likely demo to become YouTubers.

Ironically I'm a young wannabe YouTuber and I know what you mean that the content could be more engaging, but I know how ugly social issue talk can get online and good god I'm not up for it. That's the one thing I'd never ever touch, at least not until I'm a lot wiser and whatever... this... period is blows over.

Maybe other forums will be more receptive.

 

[Judge]

We're human beings. Not a commodity that can be cleverly marketed with technology. We must live with a neurological condition that involves less than two percent of the population according to the CDC. Which more often than not translates into a difficult truth:

That there are only a very few who will want to understand autism and succeed. With a few more who will try and fail. Leaving the vast majority who are relatively indifferent about us, and are prone to expecting or even demanding that we should simply conform to the neurological majority.

No elegant marketing scheme or technology can likely change such a dynamic. After all, our plight is about substance- not form. This community is about ourselves- not promoting who and what we are, but sharing our experiences and hardships amongst one another. Experiences and hardships that the public can hardly relate to if at all.

In this respect, this place continues to be a success. It ain't broke, so please don't try to fix it.

 

[ModerateMeter]

Alright, after reading a few replies to my post I can say that I have an apology to make..

I really do apologize if I made it seem like I want to shed good and bad light on this subject.. that wasn't really my intent ofc. What I actually meant with this whole thing is that I want there to be more neurotypicals informing others about autism on a lot of different platforms (i.e YouTube) so I can totally see how you guys can find it triggering if the content isn't just informative with no relatability whatsoever. (Again, I apologize greatly)

What I'm really getting at is that, I think disorders like autism *deserve* or have the right for entertainment value. And I get how this sounds kind of bad on the surface, but I feel like that way, less people would be ashamed or trying to run away all the time. I once worked with an autistic child and he kept glancing over at me and thought I was pretty buff. I thanked him and as I did, however he started talking about how he could never reach those kinds of goals because of his autism so I tried to reassure him that anyone can do what I do if they just put their mind and body into it, and that working out and being "buff" has absolutely no correlation with autism. (He was diagnosed with "classic") But he still disagreed and I didn't want to rub him the wrong way so I resumed with our work.

When I was talking about shedding light, I was sort of thinking about this kid. How being autistic (and yes I am aware of being lower-functioning, see bracket no. 1) and why it's entirely okay to have autism. 'Cause to me at least, it is fine. I get that some/a lot of people on this site are a bit more closed off, wanna stay under the radar, and indeed, experiences the public can hardly relate to, etc. I understand.

That being said, @Nitro I'll defo think about making a video about the experiences of autism. What I see a lot with sites like this however, is that IMO, they look as if someone worked on it for about a month and thought it was ready to launch on an early prototype or build. I see this a lot and it sort of annoys me how autism gets the short end of the stick while others, again like ADHD, do have better looking forums and overall content. I am well-aware that is me speaking, the next person ofc may not like these changes nor what I had to say, and that's fine, I feel like I could learn a lot from all of you pointing it out. After viewing a bunch of informative, yet entertaining content on YouTube, I just felt like autism deserves that same kind of recognition too.

Defo not popularized tho

 

[Crossbreed]

What I actually meant with this whole thing is that I want there to be more neurotypicals informing others about autism on a lot of different platforms...

Also, there are four major competing views about autism:

1. that the whole spectrum is defective,
2. that the whole spectrum represents a healthy expression of neuro-diversity,
3. that autism occurs in both benign [ASD1] & aggravated [ASD2/3] forms, and
4. that only ASD2 & 3 are really autism.

One recurring problem is (even among ourselves) when you give a presentation in any of the above paradigms, it inflames those in opposing camps.

Autism Speaks and quack therapists tend to be #1s and/or #4s.
Here, you will mostly find #2s & #3s.
(It has taken on an almost political quality.)

MORE on View #3...

 

[Ronald Zeeman]

We're human beings. Not a commodity that can be cleverly marketed with technology. We must live with a neurological condition that involves less than two percent of the population according to the CDC. Which more often than not translates into a difficult truth:

That there are only a very few who will want to understand autism and succeed. With a few more who will try and fail. Leaving the vast majority who are relatively indifferent about us, and are prone to expecting or even demanding that we should simply conform to the neurological majority.

No elegant marketing scheme or technology can likely change such a dynamic. After all, our plight is about substance- not form. This community is about ourselves- not promoting who and what we are, but sharing our experiences and hardships amongst one another. Experiences and hardships that the public can hardly relate to if at all.

In this respect, this place continues to be a success. It ain't broke, so please don't try to fix it.

I'm not broke do not want fixing quite content with who I am.

 

[Roxiee]

( welcome to the forum, others are giving advice so, I'll let them help!)

 

[Pats]

This site does what it is intending to do by giving us somewhere to go and share common experiences. There is absolutely nothing that needs improved here.

As for you tube videos. Like everything else, there's some good one and some not so good ones. You're not going to find one person's videos to cover all because that IS just one persons experiences with autism. It would be like trying to find a video that describes the entire population in one setting and trying to find 1 quality that they ALL share.

 

[Pats]

Alright, after reading a few replies to my post I can say that I have an apology to make..



What I'm really getting at is that, I think disorders like autism *deserve* or have the right for entertainment value. And I get how this sounds kind of bad on the surface, but I feel like that way, less people would be ashamed or trying to run away all the time. I once worked with an autistic child and he kept glancing over at me and thought I was pretty buff. I thanked him and as I did, however he started talking about how he could never reach those kinds of goals because of his autism so I tried to reassure him that anyone can do what I do if they just put their mind and body into it, and that working out and being "buff" has absolutely no correlation with autism. (He was diagnosed with "classic") But he still disagreed and I didn't want to rub him the wrong way so I resumed with our work.

This paragraph - you obviously do NOT understand autism. If you did, you would understand all the obstacles that would interfere with this boys ability to become buff.

And, again - this site is perfect for it's purposes - it's not an educational forum or for educational purposes.

 

[WildCat]

First, welcome to the forums. Second...

I don't watch those videos about being on the spectrum to be entertained, I watch to get informed. If getting informed is not for you, that's hardly the problem of the person doing the explaining. If it's entertaining, of course that's a welcome bonus, but if you knew a thing or two about ASD you can start to understand how that would be a problem. Here's a tip: focus on what they're saying, not the body language.

I know how people love to fawn over social media and fantasies of perfection and stardom, but a reminder: not everyone wants to be in the spotlight. Honestly, I find the facades a lot of people put on to spruce up their content mildly irritating, if not fake, after a while. Our numbers might be few, but I'm not the only one who feels the same.

As for the forums, this website, I say take it or leave it. It works as intended, is well moderated and I'm proud to be a member here. It's a step up from text-based bulletin boards of the past and, dare I say it, AOL Chat. Actually, I take that back...AOL Chat was one of mankind's greatest inventions.

 

[Ronald Zeeman]

The on YouTube videos that I watch are one's on math and physics where they describe the underlying principles.

 

[Crossbreed]

One recurring problem is (even among ourselves) when you give a presentation in any of the above paradigms, it inflames those in opposing camps.

For instance, consider Dr. Shaun Murphy from The Good Doctor (TV series).
Some are offended that an autistic character is (uncharacteristically*) savant,
when the whole point of the show is that a savant character is (quite characteristically**) autistic.
*10% of autistics are savant.
**90% of savants are autistic.