Why Are Aspies Suspicious Everyone Is Lying About Autism?

Page 2 of 12 [ 192 posts ]  Go to page Previous  1, 2, 3, 4, 5 ... 12  Next

BirdInFlight
Veteran
Veteran

User avatar

Joined: 8 Jun 2013
Age: 63
Gender: Female
Posts: 4,501
Location: If not here, then where?

08 Aug 2016, 8:52 am

Well yes, if someone does say that's exactly what they've done (read one Wiki page) then of course they are in line for suspicion. There is still a way, though, to be gentler with that person while still telling them they seem to be jumping both the gun and the bandwagon, kinda thing. Also, that brush tends to get swept broadly over even the sincere people who post that they've done very much more than that, or who are even diagnosed.

It's when that broad sweep of cynicism is applied not just to the "I read one Wiki!" person but also to everyone even the officially diagnosed, that it becomes very damaging.



BTDT
Veteran
Veteran

User avatar

Joined: 26 Jul 2010
Age: 62
Gender: Non-binary
Posts: 7,950

08 Aug 2016, 8:56 am

https://en.wikipedia.org/wiki/Temple_Grandin
This claims that Temple Grandin wasn't formally diagnosed until her 40s.

Despite her family having a ton of money for special services and educational opportunities that most parents would love to have today.



untilwereturn
Deinonychus
Deinonychus

User avatar

Joined: 1 Aug 2014
Age: 54
Gender: Male
Posts: 386
Location: Tennessee

08 Aug 2016, 9:10 am

BirdInFlight wrote:
Thank you for posting this, it needs to be said. I, too, just cannot understand why suspicion is so rampant, for the same reasons: would anyone in their right mind think that ASD is a desirable thing to have and want to lie about having?

Personally, my own story as a late-diagnosed, was that rather than "want to join the kool kidz klub" I was actually in shock and denial for at least ten years, and that was after merely stumbling across the criteria and finding it all fit me and every memory I'd ever had of my life and childhood.

Rather than discovering I fit ASD criteria and then thinking "yay can I be in you guys' gang too?" or thinking "Yay I get an excuse!" or "Yay poor me now everyone can say poor you too," instead I felt actually very shaken.

I'd spent a lifetime working to fit in and even the whiff of illumination that there might actually be AUTISM behind my strangeness was something that I perceived as in fact a threat to my entire self-concept. Because, by very virtue of the fact that I was from an older generation, I still perceived -- at that time -- autism to be only severe, and only "a tragedy".

I know better NOW, but ten years ago when I had to reframe myself, I was shaken to the core.

Jump to a few years ago I came to WP hoping for friendly guidance in a path to more formal investigation, and instead imagine my shock to find people here all but telling me I'm nothing but a fake jumping on a trend. I was 50-something and long beyond interest in trends or excuses.

This stuff rears its head on WP regularly and I'm always extremely dismayed.


Your story has many parallels to mine, with the main difference being an age gap of 9 years. Until I was formally diagnosed 2 years ago, I'd suspected I was on the spectrum for about a decade. I mostly kept my diagnosis to myself for about 6 months while I ruminated over all the implications and began making more and more connections with my childhood.

Then I decided to go public with everyone I knew with a lengthy Facebook post. It was a relief, really, to get it off my chest and be able to articulate why I had seemed a bit "off" (or maybe more than a bit) to people who had known me for years. Some seemed surprised, but others basically said, "I'd already figured that out."

I wouldn't say I was shaken as profoundly as you describe - and maybe that's because I am a little younger and had more exposure to autism over the years that didn't leave me thinking my diagnosis was a tragedy. I've had friends over the years that I suspect are on the spectrum, and I've always felt a connection of sorts to autistic kids that I met. I kind of intuitively understood their "odd" behaviors, and didn't really think they were all that odd.

Of course, now I understand better why I could relate. :D


_________________
Formally diagnosed with ASD at the age of 43 (2014), I am the author of "Never One of Them: Growing Up With Autism," available through Amazon and most popular ebook sites.

My Official Facebook Page


Jacoby
Veteran
Veteran

Joined: 10 Dec 2007
Age: 34
Gender: Male
Posts: 14,284
Location: Permanently banned by power tripping mods lol this forum is trash

08 Aug 2016, 9:13 am

BirdInFlight wrote:
And yes it must be hard to be severely impacted then observe a Level 1 person and feel quite angry that one is expected to believe this person has anything in common or deserves their diagnosis or even their pondering that they might belong.


Essentially what it comes down to. I think public perception doesn't help much, feel like you're constantly under siege, I feel like most people when they think of the spectrum is to think a)savantism or b)one of these terrible spree killers. Plus they pound into your head all these speculatory diagnosis of famous people throughout history which might make parents feel better but makes me feel like s**t. I don't want to hear about Albert Einstein or Steve Jobs or Nikoa Tesla or whoever, do they do this with any other condition? Now if you have a bunch of people that aren't even disabled identifying as autistic on top of all that, it's very threatening.



jcfay
Raven
Raven

User avatar

Joined: 7 Jul 2016
Age: 55
Gender: Male
Posts: 117
Location: Trumpville (God help us)

08 Aug 2016, 9:23 am

good points, all. Do you think those with diagnosed GAD or depression or bipolar or ADHD feel the same way? I doubt it. I see no cache whatsoever in any diagnosis of any "disorder". But I also totally understand with a crazy, wild and super varied diagnosis like ASD that some on the spectrum would find it terribly hard to relate to others. Impact on quality of life, level of physical function, ability to have a job, relationships, it all varies, but they can all vary and be present to lesser or greater degrees in anyone diagnosed with ASD.

I'd recommend anyone get a formal diagnosis if they feel they need one and it's warranted (and they can get one). Then you know for sure. That's what I'm doing. But I don't think I'll ever doubt a majority of those self diagnosed, if they fit the picture. I don't think it's a freak flag that most would want to wave high (Jimi Hendrix reference, couldn't resist). And I doubt that it's label that most or any would want to self-apply without considerable thought and introspection (save some trolls, I'm sure).


_________________
Nothing witty here...


kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

08 Aug 2016, 9:30 am

Absolutely: Asperger/autism is not a "disease of the month." Jerry Lewis isn't hosting any telethons pertaining to Asperger's/autism.



goatfish57
Veteran
Veteran

User avatar

Joined: 12 Nov 2015
Gender: Male
Posts: 621
Location: In a village in La Mancha whose name I cannot recall

08 Aug 2016, 10:04 am

There is a different lie that we aren't talking about. Some lie to themselves and deny their spectrum issues.

A cousin is not aging well and is regressing. The accumulated traumas of his life have taken its toll. His family is rich and can afford the best treatment. But, they all refuse to address his problems.

Speaking about only starts an unpleasant fight.


_________________
Rdos: ND 133/200, NT 75/200

Not Diagnosed and Not Sure


C2V
Veteran
Veteran

User avatar

Joined: 7 Apr 2015
Posts: 2,666

08 Aug 2016, 10:10 am

Quote:
The assumption seems to be that maybe we're trying to cash in on a "popular" diagnosis in order to portray ourselves as special little snowflakes. I've likewise had pushback from people not on the spectrum. When I revealed my diagnosis on Facebook, one friend on Facebook suggested that ASD was "trendy." (You know, because a life of awkwardness and alienation is apparently what all the cool kids are doing...)

I see this theory mentioned a lot to try and explain this strange skepticism around autism, but have yet to see this actually happen.
When has anyone said they're autistic and received any kind of "special snowflake" like treatment? In my experience you disclose and you get treated like a ret*d. Suddenly no one wants to know you is the most common response. I have never received any kind of veneration for it. No one has told me I'm "special" for it, just delayed/defective. I've actually never run into any way in which autism was "trendy" in the slightest.


_________________
Alexithymia - 147 points.
Low-Verbal.


BirdInFlight
Veteran
Veteran

User avatar

Joined: 8 Jun 2013
Age: 63
Gender: Female
Posts: 4,501
Location: If not here, then where?

08 Aug 2016, 10:18 am

Same here, C2V. I don't even disclose. I get absolutely nothing from having been diagnosed except my own closure and even that is complicated.

And a every so often a ton of grief here among people who are the only others who know about me and the last ones I would expect it from.



teksla
Veteran
Veteran

User avatar

Joined: 29 Jul 2015
Gender: Female
Posts: 783

08 Aug 2016, 10:27 am

Fnord wrote:
BirdInFlight wrote:
But how does anyone know that someone has only "read the one Wikipedia article and/or taken one on-line test"?...
They say so.

"After reading that article, I just knew that I was Autistic; and that on-line test just confirmed it!"



I have encountered more than one of those people.


_________________
Diagnosed with
F84.8 (PDD-NOS) 2014
F33.1 Major Depressive Disorder, recurrent, moderate.


lostonearth35
Veteran
Veteran

User avatar

Joined: 5 Jan 2010
Age: 51
Gender: Female
Posts: 13,363
Location: Lost on Earth, waddya think?

08 Aug 2016, 10:37 am

When one has first been diagnosed, they have to first forget all the other inaccurate diagnoses, outdated labels and cruel names they have been called (not that they can ever really forget that), and next they have to forget everything they thought they knew about autism. When I was first diagnosed with Asperger's I knew nothing about it and I only vaguely knew about autism. Weren't autistic people severely mentally challenged and trapped in their own world who couldn't talk and were in a constant state of fear and confusion? Also I was female, so I may as well be non-existent. But it didn't take long for me to know that it had to be true. And I'm glad it was.

Now I worry that other people will think I'm lying about being on the spectrum because of their own ignorance and misinformation, that they will think I'm using it as an excuse to be asocial or having meltdowns. After all, there are people who still think people with epilepsy are possessed by demons and need to be exorcised or burned at the stake, and I don't just mean underdeveloped countries.



Trekkie83
Blue Jay
Blue Jay

Joined: 3 Jul 2016
Age: 42
Gender: Male
Posts: 98

08 Aug 2016, 10:39 am

goatfish57 wrote:
There is a different lie that we aren't talking about. Some lie to themselves and deny their spectrum issues.


That sounds like me for the majority of the last decade and a half.



BirdInFlight
Veteran
Veteran

User avatar

Joined: 8 Jun 2013
Age: 63
Gender: Female
Posts: 4,501
Location: If not here, then where?

08 Aug 2016, 10:53 am

Trekkie83 wrote:
goatfish57 wrote:
There is a different lie that we aren't talking about. Some lie to themselves and deny their spectrum issues.

That sounds like me for the majority of the last decade and a half.
Me too Trekkie. Was in a lot of denial, quite the opposite of wanting to join any "trendy bandwagon."



ZenDen
Veteran
Veteran

User avatar

Joined: 10 Jul 2013
Age: 82
Gender: Male
Posts: 1,730
Location: On top of the world

08 Aug 2016, 10:53 am

I think it may be harder to recognize older people as being "on the spectrum."

On the one hand you have people who have been diagnosed, assisted, supported since they were young.
(Jealous, jealous.)

On the other hand you have the crusty older folks who, growing up before autism and Asperger's were
easily recognized, only have the scars from their experiences instead of the benefits they might have
acquired through therapy.

This creates two viewpoints; either one is often difficult for the other to understand.

When younger people look at older people (who say they're on the Spectrum), they may not see the signs of the claimant's well hidden Aspieness, and they can't see the scars underneath. Perhaps larger scars than you may imagine.

And when older, self diagnosed, aspies hear someone claiming to be the "TRUE" aspie, they can't see those patient years of frustration. Instead older people may only see only younger people that have been lucky enough to be given a break and just want to complain about sharing their so-very-small piece of the ((I call it "pain easing") pie. This attitude is also created by not understanding what the other person has gone through (which I don't very well).

I'm not talking about movie stars "coming out." I'm talking about our friends here on the forum.

EDIT:...to remove: "This kind of upbringing could either wreck you or make you tough." (Now where did "that" dumb thing come from)?



League_Girl
Veteran
Veteran

User avatar

Joined: 4 Feb 2010
Gender: Female
Posts: 27,302
Location: Pacific Northwest

08 Aug 2016, 12:02 pm

My only logical guess about all this is because it's the internet and anyone can lie online about themselves. But isn't it the same in real life too? Wouldn't anyone also lie about their diagnoses in the real world? They don't know you so how would they know you aren't faking it?

I don't even tell anyone in real life about my diagnoses. I don't say anything about my other labels either. Maybe on rare occasions I might.


_________________
Son: Diagnosed w/anxiety and ADHD. Also academic delayed and ASD lv 1.

Daughter: NT, no diagnoses. Possibly OCD. Is very private about herself.


MadFialka
Tufted Titmouse
Tufted Titmouse

User avatar

Joined: 1 Jun 2016
Age: 40
Gender: Female
Posts: 40
Location: New England

08 Aug 2016, 12:03 pm

By the time I signed up for this forum, it had been two years since I read that first wiki article and took that one online quiz. I did read other articles and blogs over the course of a few sleepless nights after, but then, like birdinflight (whose posts on this thread I relate to very much) I put it away. The initial 'this makes so much sense' and 'I'm not alone!' was replaced by anger and denial.

I didn't want to be autistic. I certainly wasn't going around like, 'OMG guys, I'm an aspie, isn't that cool!?' (Because, what the hell is 'cool' about being awkward, isolated, overwhelmed, and still having 'tantrums' as a 30-year-old?) That I had been trying so hard to do things others found easy and natural, only to fail again and again because of this 'disorder' I'd never be rid of, wasn't something I saw as an excuse. More like I was the butt of a very cruel joke. Two years passed before I had the courage to do something about it. I finally joined this forum because I believed I'd finally find acceptance and understanding here, and the strength to seek out a professional diagnosis. And I found those things.

But I also found people who believed my input has no value because I lack a diagnosis, to where I actually wondered if I was welcome (not through posts directed at me, personally, but at others in a similar situation). And, even worse, an alarming number of people who questioned the validity of others' professional diagnoses. People who expressed resentment toward those on the milder end of the spectrum who'd learned to (sort of, somewhat, cope) for appropriating 'their' label.

I get that coming from neurotypicals who only see the fake constructs we show publicly, who are ignorant of what autism really is, but from people on here? Yeah, it hurts a hell of a lot worse.

Because regardless of whether some professional will diagnose us as such (based on the ever-changing accepted criteria of a condition that even the most respected experts will admit is not well understood), even if we're not 'really autistic,' if we're 'just' the product of some perfect recipe of depression/anxiety/poor social skills/PTSD/hyper-sensitivity/executive function issues/obsessive compulsive traits that only resembles autism but lacks the fancy brain wiring, do we not have a place here? Can you not relate to us? Does our input not matter? Do you really have to the right to tell us 'no,' regardless of whether you believe our (professional) diagnosis, based on your interpretation of what we choose to share on this forum?

Is it really okay to shun us until we can properly convince you? What would that even take? Publicly revealing the darkest, most embarrassing moments of our lives? Going to a psychologist you personally trust and respect? Your psychologist, specifically?

Even for people who come on here going 'hey guys I took the aspie quiz and I'm autistic!' - well, what if they actually are? Yes, coming from a person who didn't dare join this forum until after they's done hours of research over the course of months, it's kind of annoying. But I think there should be a more constructive response than 'no you're not, go away.'