Anyone else experienced the autism community change?

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maxiefried
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01 Jun 2021, 5:37 pm

Thanks so much for everyone's input and contribution. I've found it really useful hearing everyone's perspectives and each response, and also reassuring that we can talk about this kind of thing here without it becoming heated. It makes me feel safer.

ASPartOfMe wrote:
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.


Thanks, this is a really useful perspective for me and I appreciate you sharing it. I hadn't considered that a lot of people hadn't been diagnosed due to generational differences. I can see how that would be difficult, and difficult seeing younger people less severe than them being diagnosed.

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 really luckily haven't experienced this particular divide. From the comments I'm reading here, it seems different community spaces (facebook, twitter, this forum, irl) have different points of tension. I'm slightly worried about the aspergers thing - that's my diagnosis. What's wrong with having Aspergers? (Genuinely curious, not trying to start anything!)

(just scrolled down and seen that Aspergers is associated with naziism... it feels like a lot to change my diagnosis of 15 years. I'll have to process this.)

starkid wrote:
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.


I wish I could find an autism club, maybe then I'd actually have friends. :D

naturalplastic wrote:
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.


It's useful to hear there's always been that split that way. I wonder what I've noticed? Twitter/facebook becoming more hostile about articulating this split? Or has it always been so hostile? (Although I feel twitter/facebook has mostly, recently, been about people wishing they were diagnosed earlier, or seeking diagnosis, & calling people who have been diagnosed young lucky, privileged, etc, I haven't noticed a 50/50 split. At least not recently.)



Mona Pereth
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02 Jun 2021, 5:01 am

maxiefried wrote:
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,

As I understand it, the point of saying that diagnosis is a "privilege" is not to put down people who have been professionally diagnosed, but rather to push back against the idea that there's something wrong with even a well-informed self-diagnosis. A formal professional autism diagnosis, especially in adulthood, is expensive and difficult to get, hence a "privilege" if you do manage to get one.

Professionals qualified to diagnose adult autism are hard to find at any price, and it's not covered by insurance. But a person who can't get an official diagnosis still needs support from the autistic community -- indeed, they need it all the more so than an equivalently disabled person who has been professionally diagnosed.

These days there are increasing numbers of adults, including older adults like me, coming to terms with being autistic. Some of us are professionally diagnosed, while others either are unable to afford a professional diagnosis or don't consider it worth their while, given the absence of services for adults.

maxiefried wrote:
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 surprised to hear this. I've seen plenty of people in various online media talking about how they were bullied or otherwise mistreated as children, either with or without a diagnosis. I don't recall seeing, anywhere, any putdowns of people who say they were mistreated as kids because of their diagnosis. If you can point us to an example, I would be interested to see it.

Anyhow, as a person diagnosed in childhood, you might have difficulty relating to some of the experiences of late-diagnosed autistic older people -- but there nevertheless are plenty of things we all have in common.

Here on Wrong Planet, we have a wide range of members, including people diagnosed as kids, people diagnosed as adults, and people without a formal diagnosis. I hope you won't feel out of place here.

maxiefried wrote:
(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?)

Due to Facebook's "real names" policy, any Facebook group for autistic people would likely consist, disproportionately, of those autistic people who are comfortable being publicly known, under their legal names, as being autistic. This is probably a very small, very non-representative sample of autistic people.

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

I've been in autistic online communities for just barely a few years, mostly here on Wrong Planet.

Generally things are more civil here on WP than they tend to be on social media sites. I've generally avoided the latter.


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02 Jun 2021, 5:47 am

maxiefried wrote:
I wish I could find an autism club, maybe then I'd actually have friends. :D

Are you in the U.K.? (Your profile says "Yorkshire.")

If so, there are plenty of "autism clubs" you can join. As far as I can tell, the autistic community is much better organized and better developed in the U.K. than anywhere else in the world. After the COVID pandemic is over with, you might want to look around for an in-person autistic adult support group.

In the meantime, you might want to try the Autscape conference, which is being held online this year.


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02 Jun 2021, 7:30 pm

ASPartOfMe wrote:
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.

maxiefried wrote:
Thanks, this is a really useful perspective for me and I appreciate you sharing it. I hadn't considered that a lot of people hadn't been diagnosed due to generational differences. I can see how that would be difficult, and difficult seeing younger people less severe than them being diagnosed.


It was not generational differences per se but then lack of knowledge back then so most from my generation went undiagnosed or misdiagnosed. Although it is beginning to change even today the vast majority of resources go to diagnosing and treating children. The expansion of the diagnostic criteria occurred in the 90s so the people diagnosed back then are now young adults so resources are going into that demographic. For older members it is now what it has always been, we need to figure it out by ourselves.

For more older adult perspectives
On the inside looking out: Life as an autistic adult

Anyone else feel angry for not getting an early diagnosis? - Wrong Planet thread


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02 Jun 2021, 7:38 pm

maxiefried wrote:
What's wrong with having Aspergers? (Genuinely curious, not trying to start anything!)

(just scrolled down and seen that Aspergers is associated with naziism... it feels like a lot to change my diagnosis of 15 years. I'll have to process this.)


For what it's worth the issues with Hans Asperger the person shouldn't be relevant to those who were diagnosed with Aspergers.

You might catch flak over the term from younger folks diagnosed under DSM 5 because under that Asperger's doesn't exist.

Older folks who are more severe might have issues due to Asperger's often being perceived as less of an issue than classical Autism, but it would be unfair to take that out personally. (I haven't actually seen this behaviour here)


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03 Jun 2021, 5:13 am

maxiefried wrote:
Thanks so much for everyone's input and contribution. I've found it really useful hearing everyone's perspectives and each response, and also reassuring that we can talk about this kind of thing here without it becoming heated. It makes me feel safer.

ASPartOfMe wrote:
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.


Thanks, this is a really useful perspective for me and I appreciate you sharing it. I hadn't considered that a lot of people hadn't been diagnosed due to generational differences. I can see how that would be difficult, and difficult seeing younger people less severe than them being diagnosed.

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 really luckily haven't experienced this particular divide. From the comments I'm reading here, it seems different community spaces (facebook, twitter, this forum, irl) have different points of tension. I'm slightly worried about the aspergers thing - that's my diagnosis. What's wrong with having Aspergers? (Genuinely curious, not trying to start anything!)

(just scrolled down and seen that Aspergers is associated with naziism... it feels like a lot to change my diagnosis of 15 years. I'll have to process this.)

starkid wrote:
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.


I wish I could find an autism club, maybe then I'd actually have friends. :D

naturalplastic wrote:
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.


It's useful to hear there's always been that split that way. I wonder what I've noticed? Twitter/facebook becoming more hostile about articulating this split? Or has it always been so hostile? (Although I feel twitter/facebook has mostly, recently, been about people wishing they were diagnosed earlier, or seeking diagnosis, & calling people who have been diagnosed young lucky, privileged, etc, I haven't noticed a 50/50 split. At least not recently.)

Never did Twitter. Used to be on Facebook. Might go back to it. Was in touch with a person I knew from WrongPlanet on Facebook, but did not really use FB for the autism community myself. So I couldnt say much about that. Just about forums like WP.



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06 Jun 2021, 5:46 pm

Yes, I haven’t been active on this site in years but an interaction I had with a moderator on a special interest group on facebook that also claims they strive to be supportive and accepting of neurodiverse people (because the moderators there all are) was so toxic that I find myself back here. I’ve been in many similar special interest groups for years without incident but I got banned from this group and was sent a hurtful message saying I “support harmful language and don’t respect the science behind mental illness” … all because I “liked” a post. It was my perception that the mod was bullying another member who was really trying to be nice to her but had apparently used a word that triggered the mod personally (crazies) … but the other member did not use the word hurtfully or in an inappropriate manner. The mod accused her of being insensitive to people with mental illnesses and the other member rightly stood up for herself, so I “liked” that. But apparently that makes me a horrible person too without ever saying a word. They of course wrongly assumed I and the other woman were NT. :roll:



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06 Jun 2021, 7:49 pm

I have strictly avoided discussing ASD on Facebook or Twitter because it is mostly mainstream people there, and also because I do not want other people to know I am on the spectrum (though some figured it out on their own. I can pass, but not that well).

Mainstream attitudes towards autism are toxic and shallow, and mainstreamers are usually less interested in educating themselves than they are in repeating whatever witty autism stereotypes they picked up from television.

Like other topics misconstrued by mainstream society, autism is best discussed in specialist enclaves of like-minded and savvy people, like WrongPlanet here.

For me WrongPlanet is for discussing things I will never, ever discuss on mainstream social media.



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07 Jun 2021, 5:49 am

Wrong Planet remains my preferred social media.
I have had good experiences at my 4 In person Autscape conferences and good bar one session which derailed at my last online one.



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07 Jun 2021, 9:54 am

There is an increasing tenancy to "debate" on social media. I think there are things people tend to say on the internet they would never say in real life for fear of getting punched in the face. I once heard internet / computer described like a casino: there is no natural light, no sense of passage of time, no connection to the outside world. These things tend to create thinking and behavior that would not occur otherwise. One way to look at it without getting into "us and them" or "the blame game" is in terms of needs. In general people behave in a way that will address their needs. The truth about human beings is sometimes their needs conflict with other people's needs. I once thought of this analogy: suppose you are 11 years old and a school student. You have brought a peanut butter and jelly sandwich to school for lunch and the kid next to you has brought no lunch. There are different ways people can (and do) react: you could give your sandwich to the kid next to you, then he would have a sandwich and you would have none. You could give half your sandwich to the kid next to you and now you would both have half a sandwich. You could keep your sandwich and say "this is my sandwich, go get your own sandwich". If you stop to think about this scenario there are different ways you could tell this story where each of the three reactions would "make sense" or "sound right". Parent's of a severely handicapped child may have one set of needs - someone who is Aspy or HFA may have others. Some people may see Autism as part of their identity and any criticism of Autism or Autistic traits impacts their identity and their sense of self, and security. Some people may see Autism as a non-essential part of them, something they have, not something they are. They may like this non-essential something or not like it, or see both good and bad things about it. Like the sandwich story these people are all trying to get their needs met, and sometimes there appears to be (real or imagined) conflict over something essential to getting those needs met. One area is research funding dollars - should these be targeted on acceptance and making the world easier for people who have Autism and don't want to change who they are, or on diagnosis and prevention - or even "a cure". Some people want to share the sandwich and some want the whole sandwich to themselves. In the movie Aladdin one part of one song goes "gotta steal to eat, gotta eat to live, otherwise we'd get along". In Oklahoma one line from one song goes "I don't say I'm no better than anybody else, but I'll be danged if i ain't just as good".

It seems I am often referencing Maslow, but frankly I am hypersensative to conflict and Maslow seems to me to be a way to understand others without playing tug-of-war.

https://en.wikipedia.org/wiki/Maslow%27 ... y_of_needs


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07 Jun 2021, 10:12 am

I have noticed a few trends that have come and gone; most have to do with non-autistic people seeking legitimacy or validation of their personal issues under the autism umbrella.  The general idea is expressible as...

"People like me who are ______ are just like autistic people because we face the same issues as autistic people."

You can fill in the blank with just about every non-autistic fringe group imaginable: furries, otherkin, cross-dressers, paedophiles, schizophrenics, vegans, homeopaths, atheists, psychics ... et cetera.

Currently, the prominent fringe groups are mostly incels, apologists for racism, Trumpsters, and various sorts of conspiracy theorists -- each group seeking to carve out its own undeserved niche within the autistic community.

I sincerely hope that this website will someday focus solely on autism, people with autism, and the specific problems caused by autism that make life difficult for people with autism.


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