The Term "Aspie," a Rant

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"Aspie-ish"

What an infuriating term.

This is a crippling disability, not some weird hobby. I don't call wheelchair-bound people "wheelies"... I hold the door open for them, and thank God I wasn't destined for this particular misery.

It's recognized by the government as a disability. Think about what that means: it's the government saying that their very discriminating experts have verified that this is such a misfortune that they are willing to officially consider you for compensation through Social Security and ensure that you are not discriminated against because your condition is such a liability.

So destructive is an ASD diagnosis to one's productive capacity and ability to live a full life, that the government will literally pay to sustain you (i.e., disability income). That's the definition of putting your money where your mouth is, on the part of the government.

I don't want to judge strangers over the internet. But having lurked around WP for long enough and reading enough posts has caused me to seriously question the genuineness of the diagnoses of many posters here. Their apparent understanding of what ASD is seems radically contrary to both mine, the DSM, and all of the textbook cases I've read about or met.

The statements I read and advice I see doled out--especially by female posters--often reads like a book report written about Lord of the Rings that refers to Frodo as an 'orc'... something that would cause the read to seriously wonder whether the person who wrote it had even read the book.

Part of this, I'm sure, is that ASD exists on a spectrum: yes, there will be people with ASD traits form whom life is a breeze and will perhaps not even know their genetics conspired to produce a disorder disorder. For others, different traits will manifest themselves to a varying extent. Others will be completely crippled by the Disorder.

No one has done more to both simultaneously hurt and harm the ASD sufferer community than Dr. Sheldon Cooper, PhD. On the one hand, this character brought high-functioning autism into everyone's living rooms, and showed that it can be charming in its own way. On the other, Cooper's delivery of a well-integrated ASD sufferer encourages lay Neurotypicals to pick and choose the desirable traits that they feel like they can relate to (e.g., braininess, nerdiness, aloofness, etc.) while discarding the textbook ASD symptoms that many here on WP are subjected to every day.

People who come out of the woodwork to join the ASD community seem to follow three patterns, generally:
1) It's quirky a la Sheldon Cooper.

2) Random people who need sympathy quick. "Did your teen throw rocks at a cop car in the ghetto? Was he evasive and disoriented when talking to the precinct psychologist? Must be Asperger's!"

There appears to be a genetic component to ASD. The overwhelming majority of ASD diagnoses have been found in Caucasians.

So when I see an AA youth recently charged with a petty crime pleading "ASD" (http://www.chicagoreader.com/chicago/st ... d=20512018) or a South Asian white collar criminal with a new "ASD" diagnosis (http://www.chicagobusiness.com/article/ ... tion-fight), I find it hard not to do the math.

Don't get me wrong. Is mental illness profoundly under-diagnosed in low-SES minorities?--absolutely. Is mental illness re-categorized as crime for racist or politically expedient reasons?--absolutely.

The evidence simply isn't there yet, but I feel like there is a strong chance that people of African descent and other persons of color dodged a bullet on this one. Sincere kudos to them.

3) Refrigerator Moms. Remember these people? They were the original scapegoats when the causes of ASD were being explored. Regardless, there is a strong presence of females in this community who were... let's call it "radicalized"... by the diagnosis of one of their offspring or because they embodied the original characteristics of the Refrigerator Mom stereotype.

Are these individuals actually ASD-sufferers?--or are they, like the Category 1, simply a little different? I can't speak for everyone, but the statistics strongly suggest that males are disproportionately affected by ASD. I would like to go so far as to say that ASD sufferers are exclusively male with few exceptions, but naturally we cannot preclude this because of the fuzzy, "spectrum" aspect of the ASD diagnosis. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4465158/)

What I'm saying is that a certain amount of gravity needs to be recovered for the ASD, insofar as it is a clinical diagnosis for a D I S A B I L I T Y. Profound alienation. Impaired executive function that will mar your behavior and render you distinct in any crowd. Unable to perceive or convey emotion. But still, so very nearly human. If the ASD person sits there, without moving or speaking, there is no way of telling that it is a counterfeit.

Forget the fact that many ASD sufferers have the exact same needs in terms of intimacy and interpersonal interaction as neurotypicals.

Forget the fact that automation is increasingly doing away with all jobs that do not depend heavily on human interaction.

Respect the expertise, take it into account but do not place blind trust in it. Refrigerator Mother was not a stereotype, it was the near universally accepted cause of Autism among the experts. If you were diagnosed it was recommended you be instititionlized for life, all mementos of you such as pictures of you be destroyed, your mom should go into therapy to find out why and what she did to you to make you not human. The DSM said if you were LBGT you were mentally ill. The government did not give you disability benefits for bieng gay they arrested you if you were caught in the act. All of that seems bizarre, inconcievable today. Why? because some outliers decided not to blindly follow the experts private and government.

I find it is hypocritical for people to say this is what the experts say we got to follow them then based on forum posts deciding a a significant portion of posters are not really autistic.

Somebody should not get diagnosed as Catagory 1 for bieng quirky, the manual says "noticeable impairments" but that topic has been discussed in thread after thread.

I do not like Sheldon either but while I agree the Sheldon Cooper stereotype, Rain Man stereotype, Autistic as hopeless burdon stereotype does cause harm the perception of harm is worse then the reality in my opinion. If some NT's wanna say Autism is a fake because Sheldon is cute, and some autistics want to judge me as not autistic because my life has not been a 24/7 nightmare if I start doubting I am Autistic because of them what I am doing is enabling these stereotypes and damaging myself.

^this

AS is an exclusively male condition? AS people are unable to perceive or convey emotion? Bizarre.

Your post contains numerous MASSIVE assumptions about people on here that you've never even met.

And you seem to think the diagnostic criteria of Impairments, vital to the making of a diagnosis, means that the person has no ability whatsoever to do anything at all, so "impaired" are they.

Impairments also means that it's a harder challenge for the person, needing anything from hard personal effort physiccally or mentally, or indeed outside help in some form, to get an effective result that an NT gets easily.

Be advised that what someone posts, the manner in which they post it, and even certain basic facts they post about their lives or experiences or work or achievements do not even tell the entire story of what their struggles may actually have been, even within those achievements.

I've posted about how easy it was in principle to start my small business. "Easy" as in it was not a complicated business to start.

But from that, I guess YOU assume that every damn thing about the process was "easy" mentally and emotionally, for me in my functioning.

It was not. INTERNALLY I still went through the agonies of how meeting new people or having to talk on the phone or answer the phone gives me profound anxiety.

INTERNALLY I still had to face down enormous fears and struggle. Struggle with change, with routine disruption, with talking to people I don't know, with dealing with paperwork.

I DID all this, did it successfully. What you DON'T know is that every year at tax time, it felt like a monstrously stressful mountain to climb. I'm about to file some official paperwork now and even though I have most of my figures, I feel stressed and anxious, and this is most definitely driven by stress and oversensitivity to potentially stressful things caused by my being on the spectrum.

I also had previously failed at EVERY CONVENTIONAL JOB I had ever managed to get and hold down, due to impairments directly arising from autism spectrum disorder, until self employment. Even my diagnosis report has these workplace issues as one of the numerous qualifying factors contributing to the decision in my diagnosis.

And so to the very concept of being on the spectrum:

How DARE you make yourself yet another person here who outright makes the general accusation to "certain" people here that you question the validity of their diagnosis.

This is one of the biggest poisons on Wrong Planet, and it makes this place seem incredibly UNsupportive, especially to newcomers, but even to some established posters.

It's frankly DISGUSTING that this utter assumption is even bandied around here on such a regular basis.

You base it on absolutely NOTHING except your impression from people's posts that they seem "too functioning" (my quote marks).

Did you know that some of the most articulate people on here are actually non-verbal and needing high levels of assistance in real life?

You would never know it on here.

And the ones who post about successfully running a business, or having impressive corporate careers, serving in the military, holding a 9 to 5 for 25 years, being wives and mothers while having an officially diagnosed ASD...

...you're doubting ALL of these people's diagnoses?

Or maybe just mine since I'm the most recent person you took a dislike to just for contradicting your doom and gloom forecast about starting a business?

You didn't like that someone with real life experience had something differing to respond with, to your theory-based musings?

So now just because I said that THE STEPS to starting my business were very simple and my being able to make a go of it was straightforward, I couldn't possibly be "disabled by ASD"?

As stated before, you have no idea of what I had to do within myself to overcome my poor functioning. What you also don't know is that in my earlier life I was indeed so "disabled" that my entire family thought I would never be able to support myself at all.

This is all to say:

YOU HAVE NO IDEA -- even when reading people's posts here -- of what their journey with a spectrum disorder has really, truly been for them, inside.

I was formally diagnosed by a qualified clinician coming on two years ago. My generation HAD no diagnosis until now. What, do you need to see scans of my documents? My ten page report with every embarrassing detail?

Not gonna happen. Not for the likes of you, CEngAcolyte.

One of our longtime members here, I won't say by name, but she was extremely smart and articulate and knowledgeable on here, an intelligent and wise asset, was in fact in "real life" severely affected and her functioning was of a level that she needed 24 hour care and assistance.

You would never have known it on here. But she was hounded off WP by some upstart who questioned her diagnosis. This person said the member was too articulate and intelligent in her posts to possibly be as severe functioning as she claimed to be. She was all but calling her a liar.

That longtime member just stopped posting here, and from things vaguely gathered, she had gone into severe meltdown from the incident on here.

So be careful when you start picking apart anyone's diagnosis here or questioning their validity based on anything posted here. It's wise to remember you have NO IDEA what happened behind the scenes for them. How it's actually hard for them to do the things they do, how their marriage isn't a picnic, their working life isn't a picnic.

You mentioned something like "breezing though life."

Oh my freaking GOD.

If you could sit down with me for perhaps it would take an entire evening, and I told you the best I could of my whole life story and everything I have been through from my earliest memory to the present day, you would apologize to me if you had ever included ME in anyone who "breezed through life."

My life has been HORRIBLE and you don't even know the first thing why and how.

EVERYTHING I've managed to do for myself, get for myself, CREATE for myself, carve out of goddamn NOTHING for myself, came at a high, high price to my coping ability. It takes every fiber of my being to have my independence.

And by the way, one more thing -- actually no, a diagnosis alone of ASD DOES NOT guarantee government help. Even in the UK where everyone outside of the UK believes the government just hands out "help" like candy.

Actually it doesn't. A diagnosis of level 1 ASD gets you diddly-squat even while you are recognized as officially on teh spectrum.

And just because someone manages to be independent and not supposedly "need" help, doesn't mean their life wouldn't actually be better if they could in fact get some.

I need help and I don't get it. As a result I'm far more stressed than I theoretically should be if only I had support.

I won't be back to this because you're clearly being so very contentious in your OP and I'm disgusted with having to defend myself or others like me.

oops

Last edited by CEngAcolyte on 17 Jul 2016, 11:45 am, edited 1 time in total.

OK, I'm just going to point out the irony that you seriously questioned this on the thread where the topic of discussion was the alienation of ASD condition from the things it actually represents.

This is straight off of the Autism Speaks site:

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers. [https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria]

The takeaway being that the ASD sufferer FEELS the same range of emotions, but is crippled in accurately receiving the emotion-charged messages of those around him or conveying his own emotions.

BIZARRE, INDEED!

Since you completely missed the point of my OP and decided that it was all about you, I consider this to be positive for all concerned.

Last edited by CEngAcolyte on 17 Jul 2016, 12:54 pm, edited 1 time in total.

"Aspie" was a contraction that the Asperger community adopted back in the 90s in the early online communities - I know - I was there.

We also promoted the term "neurotypical" to replace "normal" that had been used - at the same time as debunking the old Betelheim stuff.

NAS went with Empower the ASD person; States went with the curebie model. I also remember the shouting matches on the old Listservs...

Since you can see the nomenclature in more than one dimension (i.e., evolving through time alongside the public conception of ASD), would you say the term has had a positive or negative effect, in the long run?

That was then this is now. That past expert opinion conventional wisdom was proven wrong provides a cautionary tale against assuming todays conventional wisdom is right. In 20 years it would not surprise me at all if we look at how autism is viewed today with the same astonishment as we look at the Refrigerator Mother era I grew up undiagnosed in. I think this is especially true because the causes are still not really understood and diagnosis is still largely about observed behavoirs. This makes the definition of what is an autism impairment suseptable to society's judgement as to what behaviors are wrong which can become confused with actual impairments (such as Executive dysfunction IMHO)

Sure there are Aspie wannabies and people who think they are the next step in human evolution because they identify as aspie. I think the amount of these people is way overblown. If you do that to be trendy or as an excuse to act like an as*hole you are are going to find out quickly like "real autistics" people will be doubting you are really autistic, you will be bullied, and not hired and fired. I may be correct or incorrect about the number of aspie wanna bees but like I tried to point out earlier it is perception of hordes of wannabees that is causing harm. What all this focus on the special snowflake aspie identifiers does is inflate their already over inflated egos and increase the belief in all these negative stereotypes. Why is this good or nessecary? I don't get get it, enlighten me, I am really clueless here.

BTW I do not know about TED but cancer survivors blog and give talks about thier experiences all the time. That I have cancer is noted in my signature.

I am really interested in finding out more about this history and your part in it. Probably a topic for another thread or a blog article to be put up on the main WP page.

I believe that everyone comes to WP with individual life experience and an individual profile of abilities and challenges. The diversity between us covers a wide range. Our various neurodifferences throughout our long or short lifetimes before arriving here have typically been misunderstood, and many (perhaps all) have experienced psychological and emotional harm from being marginalised, invalidated, laughed at, excluded, bullied, in a way and with a frequency that normative people rarely understand. Many seem to arrive with a PTSD catalogue of symptoms that appears to have arisen from poor treatment rather than AS. People come here for many reasons, though the most important seem to me to be to connect, to be understood, to belong - connection, acceptance, validation and affirmation are important aspects of healing.

Healing for people on the spectrum seems to me the most important and most needed thing of all possible things. It troubles me greatly when the kinds of dismissals, marginalising judgments, harsh invalidations and so on that occur in the normatypical world are reproduced here.

BIF, I know which member you refer to, and she is not the only one who was treated badly here. Generally the spirit and ethos of WP was a wonderful vision of Alex's, and I think that vision was built on several foundations, including the need for acceptance, mutual respect, inclusivity. Personally it dismays me to see threads seeking to undermine that, and I worry about the impact on people of reading dismissive rants that will always feel personal to people in recovery. I also understand that some people become bitter from their own unhealed hurt and react by trying to dismay and discourage others, or even to create hierarchies of "real and fake aspies", apparently in a misguided attempt to self-validate themselves by way of invalidating others. It causes new damage, and if there is one thing that AS people don't need, especially in their "own space", it is more invalidation, more new damage, which has the effect of poisoning their wells.

This link from the Scientific American rebuts and contextualises the assertions that AS people lack emotional capacity:
http://www.scientificamerican.com/artic ... -empathy1/

B19,

You are arguing in circles with me.

Again, what I said is NOT that ASD sufferers lack emotional capacity.

The issue is that their ways of communicating--both receiving and transmitting--emotional information are lacking. The article you cited makes the distinction between ASD sufferers, who feel but have trouble communicating, and alexithymia sufferers, who have trouble feeling.

THAT is the tragedy: that the ASD sufferer feels emotion inside of oneself, but has difficulty letting others know about it or fluidly responding to their emotions.

Note that this is even worse than the absence of an emotional component.