Asperger’s / The Experience

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Feeling time after time that you need to say “I’m sorry” while not knowing what you did that was “wrong”. 

Being abandoned by a friend when he or she realizes that you are different “for real”, and not “just pretending”

Being treated like an object, as if you’re not standing there, and wanting to yell, “I’m human.”

Being referred to as ‘quirky’ ‘eccentric’ ‘our favorite weirdo’ or ‘strange, but harmless’, when being introduced to someone new, as if the person speaking anticipates that you will do something wrong, and apologizes beforehand because you may embarrass them.

People who criticize your need to spend time alone, but at the same time they want you to go away. In fact, they want anyone who isn’t like them to vanish from the universe.

Being told that you don’t care about people, nor do you want friends: that you are incapable of love and affection – by people who claim to care about people, but either they don’t, or they don’t consider you to be a person. 

Being told that because you are intelligent, well-spoken and an attractive female that you can’t possibly be suffering.Your life is perfect in that shallow “social” way. 

The pain of social lies, especially the big ones, about justice, equality, and fair play; the pervasive disrespect for people of ‘lesser’ value, by so-called “normal” people. 

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Living in a social world in which 90% of what humans need and value is missing. 

The constant awareness of a cage of words and looks and expectations that social people demand, but without being aware that this cage confines them, not the Asperger person, for whom cages are unacceptable.

Knowing that accepting Asperger people into “society” would result in a happier and healthier human population; better distribution of resources, effective problem-solving and greater equality in society, but that nothing we can do or say will convince social people that we have a contribution to make.

 

 

 

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A streak of Anti-Asperger attitude

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I’m both Asperger and bipolar – a pair of diagnosis –  with Asperger supposedly subsuming the bipolar symptoms. I’m not sure what the relationship is: my grandmother, father’s side, was bipolar. My father – Asperger, with some strange behavior thrown in, which did not fit with his engineering / math / science mind.

My pre-diagnosis and medication bipolar symptoms were quite extreme, obvious, and often “negative” – people would rightfully be upset with me, and yet, forgiving and forgetting.  It was the 1970s, a “wild” decade if you were young, and I suppose much of my behavior was just overlooked as “substance abuse” which was not the case.

After I began treatment with Lithium, I changed. It saved my life, but took away the person people had known. This was not a problem for me, but other people reacted negatively to the less exciting, more deliberate and calm me. Those I told about being bipolar simply disappeared from my life or “pretended” that they didn’t know. It was as if the new and better me had the “cooties.” During grad school I was referred to as “one of the Lithium kids.” This was mild sniping: in general, people are very ignorant and behave badly toward “mentals.” I stopped telling anyone.

The various psychiatrists that I have engaged over the years often expressed delight with bipolar people. We’re fun and talkative and kind of entertaining. From what I’ve been told, run of the mill “mentals” are inconceivably dull.  Some psychiatrists even get “confidential” about their (worse) opinions and worries. At such moments I’ve considered invoicing them for my time. Well, we’re all human aren’t we?

Asperger’s is another game entirely. A barely concealed streak of hatred toward autistics and Asperger individuals is “socially” acceptable behavior. There are a few people still around who know I’m bipolar, so I was blindsided by their reactions when I decided to “share” being Asperger.

Now that I’m officially Asperger, old (neurotypical) acquaintances say:

1. I’m deluded and trying to get attention.

2. I can’t be Asperger, for all the reasons that most of us (especially females) have heard: I’m not “retarded.” I can read, write and speak.

3. I don’t drool or make weird body movements.

4. I function.

5. Asperger’s isn’t real, it’s a fad.

7. His or her sister’s child has Autism, so that makes them an expert.

6. Why would I want to be Asperger? (as if it’s a choice)

7. I’m female.

8. I’m female.

9. I’m female.

These reactions come from  educated adults, with solid careers, and are mostly married / divorced with grown children.

Over the years, I’ve read a great deal about bipolar disorder and never noticed judgmental opinions about outlandish behavior (mania) so I’m shocked by the negative bias that runs through the “Autism” industry. Psychologists, parents, school staff, therapists – you name it – have zero empathy. The negative positioning of Asperger talents and gifts is irrational and weird!

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You’re welcome!

I have even contemplated the possibility that we “stink” to high heaven: produce a strange hormone or scent that drives neurotypicals to rage at every turn. There is something primitive that underlies this reaction.

 

Dicey medications / Russian Roulette

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A note about Pharmaceuticals:

Yes, I’m so Asperger that I had to Find out why my Medication was defective

Over the past two years or so, I have encountered “bad” lithium tablets; these seem to appear within batches (prescription refills) and have a deficient amount of active ingredients. In case you think I’m imagining this, my lithium level dropped below therapeutic several times. This is a very painful and dangerous situation. (I won’t go into specifics here) Since I buy generics to save money, I decided to look into just what are the regulations for imported pharmaceuticals. Shock. There really are no adequate controls:

U.S. inspectors must NOTIFY the foreign manufacture at least a month ahead that they are coming, and they DO NOT inspect for the quality of ingredients or manufacturing. They note things like, Is the factory clean? It’s like a food inspector showing up to inspect a chicken factory and saying, “What a nice clean office you have. Love the drapes!”

And like food production, any number of non-food ingredients can LEGALLY be added as filler –  The FDA works for corporations, (and their overseas suppliers in India and China – known to make unsafe products) – not for you and me.

From Scientific American: According to the FDA, the rules that it has set to regulate generic drugs are just as tough as for brand-name meds. But keep in mind that the federal agency was originally formed as a domestic watchdog—overseas expansion and the proliferation of pharmaceutical manufacturers have challenged their infrastructure. The New York Times reported that in 2007, out of 500 Chinese facilities the FDA only got around to checking 13.

Worse than that, American pharmaceutical manufacturers aren’t much better –  components are acquired from overseas and are only as safe as guesswork can predict. I talked directly to a couple of American companies who confirmed that there is no guarantee that active ingredients will be CONSISTENT from pill to pill in the same batch, nor batch to batch and between manufacturers. They are happy to tell you this, because it’s standard in the industry, and “normal” to their products. They seem to think everyone, including medical personnel and the public, know that this is the “reality” of drug manufacturing.

It's the "how to end up with the same number of raisins in each cookie" problem

It’s the “how to end up with the same number of raisins in each cookie” problem

From Scientific American: But to be fair, much of the concern is rooted in some scary generic drug scandals, in which toxic substances made it into a medication that was produced overseas, such as occurred with heparin in 2008. Today, more than 40 percent of the active ingredients in generic and over-the-counter pharmaceuticals are produced in India and China—and that number is only expected to increase:

It also was revealed that just because a drug is labeled “time released” it’s not what you may think – that the active ingredient is dribbled into you body in minute equal and stable amounts. Time release may mean that release is delayed by a coating that dissolves after a few minutes, and then, the contents is “dumped.” So, the next time your medication doesn’t “work” or makes you sick, you may not be imagining that something is different.

I also tested pharmacists: most said that foreign “generic” medications are under strict control and “just as good” as American-produced drugs. They knew nothing of the truth, which is available at the FDA website. One was quite honest (totally fed up with system) saying: I wanted to be a pharmacist to make sure my customers are getting what they need. But a giant corporation bought out our small chain, changed the name, and now accountants in the home office DECIDE which drugs and which brands our customers can get. I’m just a dummy standing behind the counter.

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Oh yeah; wait until people are harmed. Just where do these fines and damages go?

Again we see the “abandonment” of the poor, working poor, elderly and even much of the middle class to the danger of unsafe medications, while those at the top of the social hierarchy can afford “name brand” products, plus teams of  lawyers to sue corporations, should any negative consequences occur.

Asperger’s Original Cases Not Asperger’s?

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Did Asperger’s Cases Have Asperger Disorder? A Research Note

Judith Miller, Sally Ozonoff Department of Psychology, University of Utah, Salt Lake City, U.S.A

February 1997 Wiley Online Library

http://onlinelibrary.wiley.com/doi/10.1111/j.1469-7610.1997.tb02354.x/full

An interesting review of DSM IV era Autism – Asperger conflicts in diagnosis. I think what we are seeing is a continuing problem: trying to “create” a disorder, illness, disease out of “symptoms” for which there is no identifiable unifying cause. There is no basis for distinguishing which symptoms “belong” together as the result of a specific condition. It’s crazy: if a child has 6 out of ten symptoms on a list, they are Autistic; but what if 3 of those “symptoms” are unrelated to the others, and instead are the result of cultural differences, personality type, education or other? What if some of the “symptoms” listed aren’t symptoms at all, but natural variations of brain processing and behavior?
So what happens due to this “backwards” thinking? 
Researchers jump on any medical technology that comes along and  try to force it to verify that this absurd collection of symptoms does indeed arise from “Autism” “Aspergers” “Personality Disorders” and the hundreds of variations listed in the DSM IV and now DSM V.
Can you imagine if psychologists tried to diagnose why a vehicle has stopped running? They would argue over a diagnosis without looking under the hood or noticing that the car has a flat tire. If they did spot the flat tire, they’d blame the carburetor, a cracked windshield and fast-food wrappers on the floor.
They’d say things like, “You know, in a recent survey, 87% of people who have had a flat tire in the previous six months also checked off, I’m messy; being messy must have something to do with flat tires.
“Great! Let’s train this messy, flat tire-prone person to clean his-her car and have them fill out the survey again: I’m sure they won’t have had a flat tire after cleaning their car. That will prove we’re right.”
“Okay. But I’ve observed that messy people also have cracked windshields, so let’s add “cracked windshield’ to the symptom list.”
It just gets more and more absurd.
EXCERPT Link to article above: With the advent of the fourth edition of the Diagnostic and statistical manual of mental disorders (DSM-IV; American Psychiatric Association, 1994), questions about the validity of the distinction between autism and Asperger Disorder still remain. As outlined in DSM-IV, the syndromes are characterized by similar impairments in social functioning and range of interests. Both require at least two manifestations of social impairment and at least one type of restricted interests or behaviors from an identical list of characteristic symptoms. Criteria for Autistic Disorder, however, specify that at least one symptom from an additional category of communication impairments must also be present for a diagnosis to be made. Criteria for Asperger Disorder do not dictate the absence of these communication impairments, but do specify that language development must not be delayed. This is defined in the DSM-IV as acquisition of single words, used in a meaningful and communicative fashion, before age 2, and acquisition of 2–3 word phrases by age 3. Also, criteria for Asperger Disorder require normal cognitive and self-help skills.