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On Self-Diagnosis (lemmy.dbzer0.com)
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[-] Haui@discuss.tchncs.de 16 points 1 year ago

I‘m a little shocked at the amount of gatekeeping in this community. That was less of a problem on reddit tbh.

We „the autistic community“ have decided that self diagnosis is valid and that is a fact. So lets just not discuss the idea of the boogeyman posing as an autistic person and just accept people.

Thanks and have a great day. :)

[-] steakmeout@aussie.zone 7 points 1 year ago

A posted picture by an individual is not a community collectively deciding.

[-] Haui@discuss.tchncs.de 3 points 1 year ago

I know and I wasn’t specifically addressing that picture but also multiple comments stating that someone might abuse self diagnosis, which to me is just gatekeeping.

[-] Cryophilia@lemmy.world -2 points 1 year ago

That's not gatekeeping

This is gatekeeping:

We „the autistic community“ have decided that self diagnosis is valid and that is a fact. So lets just not discuss

[-] Trainguyrom@reddthat.com 3 points 1 year ago

Gatekeeping is specifically excluding people for arbitrary stated reasons. You're keeping the gate closed when you gatekeep

[-] Cryophilia@lemmy.world 1 points 1 year ago

so let's just not discuss

[-] Haui@discuss.tchncs.de 0 points 1 year ago

No, it is not.

From oxford languages:

the activity of controlling, and usually limiting, general access to something. "Wal-Mart's cultural gatekeeping has served to narrow the mainstream for entertainment offerings"

[-] Cryophilia@lemmy.world 1 points 1 year ago

so let's just not discuss

[-] smollittlefrog 6 points 1 year ago

We „the autistic community“ have decided that self diagnosis is valid

You are not the entire autistic community. Accept that people can have different opinions.

[-] Haui@discuss.tchncs.de 2 points 1 year ago

I never said that. But I am part of it and I am happy that we accept people who self diagnose since it is tremendously difficult in certain circumstances to get a diagnosis.

Additionally, I find it unfair to not state „the autistic community as a whole has decided but my opinion is different“. People will get the wrong impression and we further empower aba and other anti autistic measures if we allow gatekeeping.

I‘m not trying to fight here. I just want people not alienated. Make any sense?

[-] smollittlefrog 4 points 1 year ago

Your view makes sense and you're free to believe it.

But many others have different views.

For example the comment of whoisearth described a negative experience with overinclusion. Their view is valid and to be considered.

You answered with "let's just not try and gatekeep and we're on the same page", simply ignoring their point and asking them to unconditionally adopt your view.

You are free to only consider your view and ignore or even discredit others (as "gatekeeping").

But do not act like you represent us.

[-] Haui@discuss.tchncs.de 0 points 1 year ago

Thanks. I just want to clarify on some things which might be obscure since autism and all:

  • I accept that whoisearth made these experiences but I don’t come to the same conclusion.

simply ignoring their point and unconditionally adopting your view

No. That is not what I said. It just does not make sense to me to draw a conclusion like that from this experience. Also, the „silent masses“ is not an argument, no sources have been cited and it is an anecdotal fallacy. (I.e.: I made this experience so this is representative)

If you google „autism self diagnosis valid“ you will find many articles stating that in general, self diagnosis is a way of dealing with the very limited resources in autism healthcare and considered a more helpful strategy at this point.

We are talking about people harming themselves or worse because they are helpless and don’t know what to do. Gatekeeping cost’s lives.

Also, if someone wants to challenge me, attack the idea that invalidating self diagnosis is gatekeeping (which will probably fail) and not me personally because it shows lack of character.

The summary of this imo is that the experience of parents to autistic children to late/undiagnosed autistic adults could not be more different and we should probably just leave our pent up emotions at home and try to find common ground and accept eachother. What happens otherwise (which we have seen) is two sides usually living in their echo chambers and disresprecting the other side when they come in contact.

It’s pretty impossible for me to explain autistic thinking of an adult to anyone not on the spectrum because it’s night and day from allistic thinking.

[-] smollittlefrog 1 points 1 year ago* (last edited 1 year ago)

I made this experience so this is representative

That is not what they claimed. They claimed to represent "many", not everyone. Only you made that claim.

You can tell them that their argument is "an anecdotal fallacy" for which "no sources have been cited" and ask them to provide further evidence. That is not what you did. (You responded with your own sourceless anecdote, followed by the aforementioned.)

attack the idea that invalidating self diagnosis is gatekeeping (which will probably fail) and not me personally

You seem to have misunderstood my intent.

I don't really have a strong opinion about people who self diagnose. It does not matter to me whether or not they're freely included. As such, I do not intend to "attack the idea that invalidating self diagnosis is gatekeeping". As I said, you're free to have that opinion, I won't challenge it.

The thing I do have an issue with is how you presented your opinion as without alternative, claiming to represent the autism community as a whole and disregarding others' points of view.

You can try to invalidate my point, insulting me by saying that criticising your way of presenting and discussing views "shows lack of character".

But that won't stop me from telling you to please stop unreasonably misrepresenting and disregarding others in the future.

[-] Haui@discuss.tchncs.de 0 points 1 year ago

You‘re splitting hairs now and I wont go along with that.

I do accept that I could have phrased it better, my core point was correct though.

Have a good day.

[-] glassware@lemmy.world 4 points 1 year ago

We „the autistic community“ have decided that self diagnosis is valid and that is a fact.

So true and I recommend anyone who spends time in online autism communities just get involved in IRL autism communities instead. I find online autism communities utterly toxic and full of gatekeeping and hatred for self diagnosis, which no one I've met in person has ever had a problem with.

[-] Haui@discuss.tchncs.de 3 points 1 year ago

Thanks for saying that. I was genuinely baffled that nobody actually came to support this.

[-] glassware@lemmy.world 2 points 1 year ago

No problem. I remember talking to my friend who works in autism support before my assessment, and I was shocked when he said it's still valid to identify as autistic even if you get a negative diagnosis. I said "they wouldn't like that on the autism forums" and he just rolled his eyes. The online community really isn't what the community is like!

My assessor said the same thing. There's a spectrum of symptoms and no objective test, and ultimately for low support needs, whether yours reach the clinical significance for a diagnosis is a judgement call. You wouldn't have passed the preliminary meeting to get a full assessment at all if you didn't have autistic traits.

[-] Haui@discuss.tchncs.de 3 points 1 year ago

Thanks for elaborating. I mean, I would say someone who thinks they are autistic would most likely have a reason for that. Mostly that is more than one or or one very strong autistic trait. Without that I would ask how they concluded they might be autistic.

An then there is the somewhat tinfoil hat style idea that you have trolls and non autistic people in online communities to an extend who can make the majority if a group is very small and not moderated enough. That way you can end up with people preferring to judge if others are valid instead of blanket accepting everyone.

There are a lot of factors that can contribute to this. Also, I have met people who pretty sure are on the spectrum but who are ableists par excellence since they were molded to fit society’s standards. So, there is a ton of stuff to take care of in a sub like this.

[-] whoisearth@lemmy.ca -5 points 1 year ago

This is so not the case as on reddit and I'm disappointed to hear someone say that. As the father of an L2 child the majority of autistic and "autistic" people online are the exception not the rule. This is why subreddits like spicyautism came around because of the deluge of asshats who don't represent the silent masses of autism minimizing the struggles of life.

I'm sorry if that comes across confrontational but it's the reason why for many, myself included, the main autistic subs became a toxic cesspool of self diagnosed people invalidating real autistic people because they know better.

[-] Haui@discuss.tchncs.de 6 points 1 year ago

It really comes off confrontational. As an autistic adult with an autistic wife I can vouch for the exact opposite. It took me years to get a diagnosis, same for my wife.

We don’t have any resources for autistic adults, doctors don’t know shit about autism in adults and if someone has an abuse trauma, they get institutionalized for that instead of looking at the bigger picture.

I don’t wan to fight you. Your feelings and experiences are valid. Let’s just not try and gatekeep and we‘re on the same page, deal?

[-] ipd@universeodon.com -1 points 1 year ago

@Haui @whoisearth
I don't understand your "It really comes off confrontational." What is it in your words.

I had one visit with a pcp, and then read his session notes because I could. It was obvious that he really didn't get what I said and instead reported that I was flakey, rather than consider that there was more depth than he could recognize. I wrote to correct him. I may have to teach him that diferent is not bad or dumb or a disability, it can also be a superpower. Just because I stim behind my back, doesnt mean that I can't understand particle physics and ask hard questions, or sometime overload and need to leave the room. Medicine is dumb.

You are right, yo don't want to fight me. As a camo I'm not exactly sure that my feelings are valid, even though my memories are sharp, and I know what I did would piss some people off. I mean, the past is the past and i'm not denying it happened. The reframe is comfort. Every day, millions of 'Oh yeah's.

I'm working on figure it out.

[-] Haui@discuss.tchncs.de 1 points 1 year ago

I‘m having a hard time finding the source of the miscommunication here but I get you. It is insanely frustrating to talk with the uninitiated about autism in adults.

My therapist stepped on my feelings so many times I can’t count them. „Do you really think you‘re autistic?“ well, the diagnosis says so and I also stimm a lot, have selective mutism, lack facial expressions, don’t understand body language, cant read or remember faces, am mindblind and countless other things I can’t think of rn.

I‘m not stupid either but it turns out I‘m very easy to take advantage of if I trust someone. Bad combination.

[-] glassware@lemmy.world 2 points 1 year ago

Spicyautism came about as a troll subreddit for non-autistic parents of autistic children to talk about how much they hate low support needs autistic adults. They only posts there that get more than 20 upvotes are "Here's why I don't think L1s really have autism"

[-] whoisearth@lemmy.ca -2 points 1 year ago

Proof of just hurting your feels?

[-] glassware@lemmy.world 4 points 1 year ago

Proving my point? You're a non-disabled person trolling a disability forum with ableism, but you think you have some righteous justification because you know somebody with a more severe disability. And you'll never self reflect on it. Spicyautism in a nutshell.

this post was submitted on 05 Sep 2023
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