http://atlanta.creativeloafing.com/gyrobase/Content?oid=oid%3A107423&comments=yes

Kent Adams writes:

“Mary Grace, AS, uh, I don’t think so.
Unless I’m missing something, exactly how were you diagnosed and by whom? From the story, I don’t see how you met the DSM-IV criteria for AS, perhaps ODD, but AS?”

To which Mary Grace felt compelled to respond and give personal information.

***

A different Mary (not Mary Grace) soon after wrote:

“I have AS, and to me you don’t sound like someone with AS. Impairment in social interaction has to be profound, not simply that you can’t deal with people sometimes. So let me understand, you don’t know who diagnosed you, whether they were qualified or not (I guess this was never a topic of self discovery for you). You wrote “I had a truckload of impairments, but since no specific area is mentioned, I don’t know if they applied.” Exactly what were you referencing when you wrote that, a diagnosis? Where were your impairments mentioned? I can’t diagnose you from the article, thus the question “I’m missing something…..From the story, I don’t see how you met the DSM-IV. I agree, not even a trained psychiatrist (trained specifically in PDD) could diagnose from anything mentioned about you here.”

***

Finally Mary Grace realizes what is starting to happen, and she defends herself:

“I’m in an AS homeroom at school, I’ve been to several psychiatrists, and many, many of my behaviors fit the typical ‘aspie.’ Just because this article doesn’t mention them doesn’t mean they aren’t there. But you know what? I’m not going to put my life on display for you just so you can play judge and jury over whether I ‘really have AS.’ I do have AS, and you can choose to believe or disbelieve it, it doesn’t matter to me, though it is rather insulting that you and this Kent guy think you can say something like that without even having met me.”

The probing stops, but for some bizarre reason, on the second to last post, Mary Grace’s mother feels compelled to give personal information about Mary Grace, to prove that Mary Grace really is an aspie.

“When Mary Grace was 9 yrs. old her psychiatrist had her tested by a fellow psychiatrist. Their diagnoses at that time was intellectual giftedness (though uneven cognitive development), a nonverbal learning disability and depression. This combination of diagnoses accounted for a variety of presenting problems including: poor social interactions, difficulty adapting to new situations, inability to read social cues and benefit from feedback, difficulties dealing with cause and effect in relationships, poor social judgment and perception, her tendency toward social isolation, overreliance on language as a defense mechanism and means for gathering information. Around the same time she was tested by the school psychologist, the results were basically the same. The diagnosis evolved into PDD-NOS, most likely Aspergers Syndrome. At around that time her behaviors were so antisocial,that the school system didn’t know what to do with her, she was placed in a totally self-contained elementary school for children with emotional and behavioral problems. Right now she’s studying for a Latin test. Remember, she’s only sixteen years old, a junior in high school.”

To which I replied at the end:

“To Mary Grace and her mom

Thank you both for your comments. I intend to write a piece on what I have taken away from this discussion. You both handled yourself with grace and sophistication. The only thing I would recommend would be this: Don’t succumb to people who try to cast doubt on Mary Grace’s diagnosis. Such probing is insulting and appropriate, showing a definite lack of social skills. Furthermore, it is an obvious attempt to discredit Mary Grace and her opinions. This is the kind of thing that happens to ASD people every time they try to voice an opinion about anything. ‘What do you know, you are so high functioning!’ quickly turns into, ‘You are just a nutjob trying to pass yourself off as an aspie.’ The thing is that someone could write something about another disability, such as deafness or paraplegia, and it would just be assumed that the person was not lying about it. But when it comes to autism, an outspoken autistic/AS person is discredited. What this shows is a lack of understanding about autism and how complex it is. That is why http://www.gettingthetruthout.org/ is such an important piece to look at. It flies in the face of all of what people assume to be true about autism. What I’m saying is, while it is certainly your right and your decision whether or not to reveal ‘evidence of diagnosis,’ I would recommend against doing it because you feel bullied by others to do it. That’s because it will embolden those same types of people to keep demanding such evidence from others who are actively writing about their own experiences with autism.

AI

“if someone was giving a presentation on sex education, would that by itself give you permission to ask about their sex life?”

Yes. But they don’t have to answer. They can model a polite refusal to answer that will in fact be very useful to many of the young people in the class who may be subject to strangers walking up to them and asking about their sex lives. (This *does* happen. Especially to young women who have been taught to be polite but haven’t been taught how to tell someone to back off.)

I’m reminded here of some siamese twins who made (make?) a living doing public presentations and take questions from the audience. Of course, every Q & A session includes a question about their sex lives because people are curious. The answer is very simple: “That’s personal.”

“How about a woman with big breasts?”

No. And there’s no reason to ask an impolite question in this situation.

“Somebody making out in public?”

Maybe. If they’re being offensive to too many people and could use a reminder.

“If someone spoke against abstinence-only education for high school kids, would, “Did you sleep around as a teenager? Have you ever knocked some girl up?” be polite questions?”

No, that wouldn’t be polite but it would be a good thing to ask anyway.

Politeness is useful and often kind, but it’s not the only virtue. As my self-defense teacher pointed out once, letting someone know you don’t trust them is very, very impolite – but it could save you from some very nasty outcomes. And as Amanda points out, politeness can be just I’M NICE I’M NICE I’M NICE signals covering up poisonous statements.

To use an analogy, if someone was giving a presentation on sex education, would that by itself give you permission to ask about their sex life? How about a woman with big breasts? Somebody making out in public? If someone spoke against abstinence-only education for high school kids, would, “Did you sleep around as a teenager? Have you ever knocked some girl up?” be polite questions? If a female friend confessed to having trouble in bed, would it be reasonable to ask for a complete set of records from her gynecologist?

No. At least not without several intervening steps to establish trust and comfort. Because respect for a fellow human means understanding that some things are personal, some things are private, and a person shouldn’t have to justify why they don’t want to put the intimate details of their life on display. And agreeing to talk about the subject in a certain context doesn’t mean you’re opening up every element of your life for scrutiny. If sharing is a gift, then don’t go up to a stranger on the street and ask, “Where’s my present?”

That’s why I mentioned to someone that, were they to suddenly find themselves immersed in a world where they were treated and viewed as auties are in this one, there are parts of themselves that they take for granted now, that they would probably lose in a hurry.

But also, when I finally say “I’ve had enough”, that in itself is taken as totally inflammatory, so I didn’t really need to add much to that.

On the other hand, I believe it is helpful to have some common knowledge about private topics, and that can only happen if people are willing to divulge such private info to the public. For instance, sex is a very personal topic, but I think it’s important to have some idea of what sorts of sexual behaviors and thoughts many other people experience, because hearing about other people’s sexuality can help a person to understand their own sexuality. I wouldn’t understand my own sexuality half as well as I do if it were not for the willingness of others — many others — to reveal info about their own sexuality. Certainly I could not actually form a close personal relationship with that many people; in order to have this information most of it has to come from people I *don’t* have a personal relationship with. People who have chosen to make personal info about themselves public, and not always anonymously, either.

I myself am reasonably glad to share personal info about myself *IF* it is in a rather anonymous setting like the internet, and if the information that I’m being asked for is relevant to the particular context–no asking me about my sex life in a forum about cell phones, for instance; that’s rude. But in a forum about sexuality, it’s fine with me. If I were to go in person to a conference about sexuality, though (it’s rather unlikely I would do this anyway), I would be quite unwilling to answer some of the same questions I would gladly answer on the internet, though I would probably be comfortable answering a bit more than I would if, say, one of my co-workers suddenly got curious and decided to question me about my sex life.

Of course, I’ve never had the experience of being treated like a lab rat or a curiosity in a zoo; if someone was questioning me with that sort of perception of me behind their questions, I’d find it highly offensive. Focusing on what makes people different from the norm, and being “fascinated” by that, usually involves a certain othering of that person, a dehumanization of them, don’t you think? It can be a way of reducing a person to their most sensational or unusual characteristics.

But also I admit I *am* fascinated by people’s differences from me, particularly cognitive and emotional differences; I find that humans are so immensely different from each other in thought and emotion that everyone who isn’t me has a certain degree of mystery about them, and most people remain mysteries because I’m usually afraid to ask them about the inner workings of their minds, or because I honestly believe it would be rude to do so. Doesn’t stop me from being curious, though, of course. For instance, I’m insanely curious about the emotional dynamics of other people’s marriages, but that is so personal the only place I get to learn about it is in marriage books, or from this one particular friend who likes to tell me many of the details of her marriage even though I’m pretty sure her husband wouldn’t like her telling people that stuff. Sometimes with people who are very close to me, I feel it is ok to ask personal questions, like my husband, for instance. But sometimes he does get irritated at my questions, I guess because he feels that I am asking him to “justify” or “defend” his thoughts and feelings. I don’t feel as though I am doing that, though; I just want to *understand* his thoughts and feelings. I mean, I *love* examining and “dissecting” my own thoughts and feelings; I don’t equate analyzing them with destroying them or distancing myself from them or criticizing them; quite the opposite. To have someone else examine and analyze my inner being, questioning and delving and learning about me, if it were someone close to me that I trusted, would be rather fun and complimentary. When my husband analyzes me it always makes me feel good, like he’s trying to understand me deeply, and if his analysis is correct, it makes me feel even better, like he *does* understand me. My husband is also NT, btw.

Anyway, I should also admit that I began reading your blog primarily because I was interested in what it’s like to perceive and think in a very different way than the way I perceive and think. Laurentius-Rex says on his website that he is a divergent thinker; well, I at least try to be a divergent thinker, though my thinking often falls into many common traps. So I try to learn about divergent thinking from others, in hopes of learning to pull myself out of those traps. Also because it’s fun and exciting and interesting to learn about different ways of thinking. I have gotten a bit of that out of your blog, but actually not that much. In fact the vast majority of ideas you write about don’t seem all that different from ideas I might have myself. Sometimes you write something about yourself that I find very different and incomprehensible, but so far I have been afraid to ask you about those things. Like when you talk about not being able to access knowledge on demand. Or what it is like to not always be able to understand verbal speech, but sometimes to be able to. I am wondering if it is rude to ask you about these things? I don’t *feel* as though my interest is dehumanizing, but that doesn’t mean it isn’t. I don’t perceive those questions as very personal, but maybe they are.

Finally, I want to say that, although I didn’t come here looking for information on disability rights, now that I have been reading I find myself becoming more and more passionate about the subject of injustices committed against disabled people. When I was younger my uncle murdered my cousin (his son) and simultaneously killed himself in a murder-suicide (using car exhaust). My cousin was autistic and I think in his later teens. I had never met these relatives, only seem pictures of them. I recall feeling more sorry for the father than for his child; maybe I even thought my cousin was better off. Because of your blog I have had my eyes opened to a lot of things so far, and started to strip away some of my opinions about disability that I am learning now were wrong, offensive, evil, and dangerous. So, I would just like to end here by saying thank you, Amanda, you have changed me for the better and I hope I can in turn help others as a result, and continue changing and learning because I still have a long way to go.

I hate being walked on by others and I hate even more than I enable this to happen. But even interacting with such a person to tell them I don’t like their behavior……..would be soooo uncomfortable….and if I did it as Ivan, I’d probably get into trouble…..saying “go meet your demise” wouldn’t go over very well.

ai