Anyone else experienced the autism community change?

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maxiefried
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28 May 2021, 5:16 pm

I was diagnosed fifteen years ago, and I've dipped in and out of online autism community spaces ever since. I have no idea whether I felt I ever fit in in community spaces, but either way I'm finding the culture of the last five years or so pretty inhospitable (although there are positives). It feels like recently, diagnosis is seen as "lucky", "a privilege", etc, and having been diagnosed as a child and then been subject to some really horrible stuff because of my diagnosis, my experiences aren't really welcome. (I'm not talking about this forum - I've not visited here in like a decade. Mainly talking about twitter and facebook groups I guess?)

What are everyone else's experiences? If you've been in autistic online communities more than a few years, what has that been like?



kraftiekortie
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28 May 2021, 10:17 pm

I was diagnosed as a child, too.

I haven’t experienced hostility here because of that.



Jiheisho
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28 May 2021, 10:37 pm

I would stay away from Facebook and Twitter. Those are just toxic places.



IsabellaLinton
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29 May 2021, 12:44 am

I'm sorry you've had those negative experiences. The vibe I get from most social media isn't very positive. It's usually parents of autistic children exploiting their kids, feeling sorry for themselves, or ignoring our reality. The fundraising and awareness campaigns are often related to initiatives which most of us don't support. I've never used Twitter or most of the platforms but my daughter was on a FB group for autistic adults and most of it seemed divisive or political. She got tired of the same rhetoric over and over again. I'm sure there are good people out there doing good things, but overall I feel like our voices are dismissed.



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29 May 2021, 10:42 am

I have been on this site since 2013. From 2014 to 2016 there was generational conflict with some young members questioning why older members were not diagnosed. The answer is only the most severely autistic people were diagnosed back when the older members were young. Many older members took the “why were you not diagnosed” question as implying they were not diagnosed because they are not autistic but autism wannabes and were offended and lashed back by calling younger members ungrateful and spoiled.

Thankfully those days are long gone here at wrong planet. Every few months an older member will ask other older members are you angry you were not diagnosed young. The question is asked because being undiagnosed or misdiagnosed as older members often were lead to a whole bunch of negative consequences. It seems the majority of very late diagnosed member despite all bad things that happened for various reasons are happy that they were not diagnosed at a young age. That opinion is far from universal. Those that are unhappy with not being diagnosed at a young age have not generally expressed resentment towered younger members.


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29 May 2021, 12:40 pm

I was diagnosed when I was 13 and joined this site three years later.


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30 May 2021, 5:14 pm

interesting . this is common in many areas where social acceptance has only just caught up .. the older members of whatever categorisation often had to suffer treatment the youngers haven't .

I'm new to the community but very familiar with the point you're making . it goes back to the generational difference . for example when you look at technology . half these youth nowadays take for granted advancements that were simply unavailable in previous generations



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30 May 2021, 8:34 pm

This place used to be pretty bad many years back, this was full of autism supremists and they all have moved onto Twitter and Facebook. They shame anyone who does not view autism in a positive way and if they use the term Asperger's or see it as a disability. Pretty toxic and they have become the label and feeling and experience police.

I mean if autism weren't a disability, why even make it a diagnoses, why even have an IEP for it and other accommodations and disability services for it for them to get assistance? Why even get diagnosed if they do not have a disability? It just makes it sound like they are socially awkward NTs that wanted to be labeled to be special and get attention. That is the stigma now they have put on those who put autism in their bios and talk about it online, now everyone assumes anyone doing that is a wannabe and a faker. When one of my online friends suggested I put aspie in to twitter bio to explain some comments I make, I told him it would back fire because it would attract trolls and people would think I was one of those "aspies."


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starkid
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30 May 2021, 9:30 pm

I don't have any experience with the Facebook or Twitter communities.

The idea of autism has become way too broad and cool among some groups of people (what they understand about the reality of autism is another matter). By "broad," I mean that people will wonder whether they have autism despite having only two autistic traits. You can also see it in the ridiculous online lists of female autism traits, which are full of personality quirks that have nothing to do with autism. It's like people think any kind of weirdness might potentially be autism.

Also is the fact that autism has become more of a personal and social identity, not just a medical condition. Some people seem to vibe with how they see the identity more than they relate to having the medical condition. As if they see autism as a club, and they want to join, and being able to join is more important than actually being autistic. There is a positive side to the growth of a social identity as well, but it applies to other types of people than the people who want to join Club Autie.



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30 May 2021, 9:40 pm

I wouldn't know, this is the only Autism community I am a part of.

Everywhere else on (and off) the Internet, I'm in the closet. There's a chat room or two where I don't care who knows (on the rare occasion that it actually gets brought up), but otherwise I tend to avoid the subject.


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30 May 2021, 9:55 pm

Have been on aspie websites about the same length of time as you.

Was active on the "Aspie Hangout" on Delphi Forums for several years before I discovered wrongplanet.

I have ....not...noticed any change in the degree of hospitality of the community over those years.

So I cant say that I relate to what youre talking about. Sorry.

There has always been a split between those who wished they were diagnosed earlier, and those who wish they had not been diagnosed early in life. That is NOT a change- but a running source of contention.



browneyedgirlslowingdown
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31 May 2021, 11:25 am

I've been in Facebook groups for a long time, I was only formally diagnosed about two weeks ago. I keep this information to myself in many groups I am in because I suspect I would be attacked by the self-diagnosed. Most people in these groups I participate in are under 40 mostly between 18 and 35. They are very aggressive and describe ASD as something like a personality type from the Meyers Briggs test or something. I just stay quiet, and keep to myself, commenting here or there, but not saying very much. I also don't share on any of my own social media that I've been identified as being Autistic. There are other older groups I am in that have stayed pretty stable. I think culturally gen Z and some younger millennials are really into being different, special, or having a marginalized identity and for the larger social community to recognize this and be responsive to it. I just try to avoid groupthink and group participation in these intolerant places as much as possible.


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IsabellaLinton
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31 May 2021, 11:29 am

browneyedgirlslowingdown wrote:
I've been in Facebook groups for a long time, I was only formally diagnosed about two weeks ago. I keep this information to myself in many groups I am in because I suspect I would be attacked by the self-diagnosed. Most people in these groups I participate in are under 40 mostly between 18 and 35. They are very aggressive and describe ASD as something like a personality type from the Meyers Briggs test or something. I just stay quiet, and keep to myself, commenting here or there, but not saying very much. I also don't share on any of my own social media that I've been identified as being Autistic. There are other older groups I am in that have stayed pretty stable. I think culturally gen Z and some younger millennials are really into being different, special, or having a marginalized identity and for the larger social community to recognize this and be responsive to it. I just try to avoid groupthink and group participation in these intolerant places as much as possible.



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31 May 2021, 7:48 pm

League_Girl wrote:
This place used to be pretty bad many years back, this was full of autism supremists and they all have moved onto Twitter and Facebook. They shame anyone who does not view autism in a positive way and if they use the term Asperger's or see it as a disability. Pretty toxic and they have become the label and feeling and experience police.

I mean if autism weren't a disability, why even make it a diagnoses, why even have an IEP for it and other accommodations and disability services for it for them to get assistance? Why even get diagnosed if they do not have a disability? It just makes it sound like they are socially awkward NTs that wanted to be labeled to be special and get attention. That is the stigma now they have put on those who put autism in their bios and talk about it online, now everyone assumes anyone doing that is a wannabe and a faker. When one of my online friends suggested I put aspie in to twitter bio to explain some comments I make, I told him it would back fire because it would attract trolls and people would think I was one of those "aspies."

I sometimes lurk on twitter autism threads. These days there is plenty of scolding people for using or identifying as ”Aspie”. The scolding usually goes something like this “We (The Autistic community) don’t use Aspergers anymore because Hans Asperger was a Nazi. That is why Aspergers is not a diagnosis anymore. If you still use Aspergers this proves you are a supremacist that hates other autistics that you think are lower than you”. It has been three years since Aspergers Nazi complicity was exposed but the amount of tweets like this has not decreased from what I can see.

Back in 2014 before Hans Aspergers complicity with Nazis was known but just a year after the Aspergers diagnosis was subsumed into ASD there were three or four simultaneous WP threads with people demanding other members not use “Aspie” for various reasons. The main arguments were often like these. “Aspergers is not real. Everybody that identifies as Aspie does so because they do not want to be associated with low functioning autistics”. “Besides being elitists most people that identify as Aspies are self diagnosed wannabes that are ruining things for us real autistics”


The elimination of the Aspergers diagnosis had nothing to do with Hans Aspergers Nazi complicity. It happened before it was known.

Aspergers and Autism supremacism has always been a problem on Wrong Planet. It waxes and wanes. Be it rants that say NT’s are dumb, hive minded, NT’s are this and NT’s are that, statements that this treatment may be good for the low functioning, Aspies are the next step of evolution, and the claims of Autistic/Aspie “superpowers” the latter of which seems to be popular among parents of Autistics. While it exists it usually gets pushback. From what I see most members here are not like that and never were. It is horrible that there is this stigma, that people such as yourself are afraid to say who you are.


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31 May 2021, 8:35 pm

browneyedgirlslowingdown wrote:
I've been in Facebook groups for a long time, I was only formally diagnosed about two weeks ago. I keep this information to myself in many groups I am in because I suspect I would be attacked by the self-diagnosed.


Ah yes, I forgot to mention: Along with the special snowflake autism-is-my-personality "self-diagnosis" crap, there are more people trying to downplay the importance of real diagnoses.

They say it's "just a label," which is stupid because lots of people can't get the therapies they need without that "label"; plus, a qualified clinician's professional opinion is much more than just a "label."



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31 May 2021, 11:22 pm

I was diagnosed when I was 5 and a half. I don't let it define who I am. I also remember the conflict between the older and younger members. It seems to be ironed out now.


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