Inkwell: Authors and Artists
Betsy Schwartz (betsys) Thu 28 Oct 10 10:15
<scribbled by betsys Mon 1 Nov 10 13:10>
David Albert (aslan) Thu 28 Oct 10 10:42
I've always wondered, if MOST people have a certain "disability", whether it still qualifies as a disability. Most humans aren't very good at playing professional basketball: at what point does that become a disability versus just a normal human trait? Is it based on a specific percentage of the population? Less than 50% but more than 0%? On the topic of the book: I am still not aware of ever having met a girl on the autism spectrum. I'm going through some of the traits and trying to figure out whether that is only because I wasn't tuned in to look for it.
uber-muso hipster hyperbole (pjm) Thu 28 Oct 10 10:53
I have met several, having worked in tech for 10+ years now.
Maria Rosales (rosmar) Thu 28 Oct 10 11:25
<aslan>, from my understanding of disability theory, something becomes a disability when society is set up in a way that makes it harder for people with that trait to have access to things that most people take for granted.
David Albert (aslan) Thu 28 Oct 10 11:47
Makes sense. In terms of having met people, I'm sure I must have (at least assuming the premise of the book is accurate) -- I just don't know who they are. It has definitely not been obvious. I have met plenty of boys with obvious Asperger's. The appendix in the back of the book reinforces the difficulty of noticing girls with Asperger's versus boys -- nearly all the Female/Male differences on pages 233-234 suggest that girls with Asperger's look very much like anyone else: more open to talking about feelings; obsessions less unusual; more expressive in face and gesture; better at socializing; no stuttering; etc. I'm sure it's a matter of degree, but given this list I'm not at all surprised that people fail to diagnose the issue much of the time.
Betsy Schwartz (betsys) Thu 28 Oct 10 12:10
<scribbled by betsys Sun 7 Nov 10 10:03>
Steve Silberman (digaman) Thu 28 Oct 10 15:59
Wow, such great posts everyone. Thank you! And thank you Rudy for your frank and beautiful replies. <aslan> wrote: > I've always wondered, if MOST people have a certain "disability", whether it still qualifies as a disability. I think this is one of the things that makes study of the autism spectrum so profound. Because the spectrum comprises both people who can't walk or talk and people who could be mistaken for neurotypical, there's no bright line dividing the two populations. I think that has very wide-ranging implications, including accounting for SOME (not necessarily all) of the apparent rise in incidence in ASDs. Rudy, I appreciate your honesty about your "peer diagnosis." Has anyone ever challenged your diagnosis in an aggressive way, to discredit your work? I was thinking about this this morning and wondering what I would do if I ever had to "prove" that I'm gay. Obviously it's a different situation, but, in all the years that I've been meeting people who tell me they're on the spectrum, it never occurred to me to question their diagnostic status, unless it was someone who just took a quiz on Facebook and scored highly or whatever. That's obviously not a diagnosis, though it can lead to one. <slf> asked, in reference to a list of AS traits: > isn't a lot of that stuff true for nearly anybody? Some of them, yes, sure. But many traits on those lists strike me as nearly the "opposite" of me or something -- but they do describe my husband. Another question, Rudy, totally outside of the subject of Aspergirls: As a jazz singer, who are your role models? What jazz really inspires you, of any type, vocal or instrumental?
uber-muso hipster hyperbole (pjm) Thu 28 Oct 10 17:13
A thumbnail of my experience. I was always a quiet kid, turned inward with my thoughts. I can remember being like this as early as 5 years old. I would often sit in the stairwell at home and bellow a variety of repetitive phrases and sounds. I loved the echoing and my Mom never seemed to mind. I was not a social animal growing up and did not catch onto "the rules" the way my classmates did. I started getting teased when I was about 8. I had no idea how to read their intent or how to defend myself so I just turned all the more inward. The teasing became merciless and for many years I was "that kid" in the class who got teased WAY more than anyone else. I had a facility for geography and history and for memorizing facts. I started to rely on my knowledge and memory to pass as a social skill, rather then developing emotional skills. I read a lot. When I got to high school things got easier and harder. I'm physically pretty imposing so by the time I was 17 or so no one would mess with me. I did not do the conventional sports though, my co-ordination was lacking and I wasn't good in team environments where you had to communicate verbally, but I did get into running and Olympic style rowing, sports that provided the repetitive motions that always seemed to soothe me. I was more accomplished in rowing than in anything else I have ever done in my life. I was so inept and shy around girls that all my attempts at connection there were fiascoes. I didn't kiss a girl until I was 18, I didn't go on a real one-on-one date until I was 20. My first few attempts at girlfriends were so challenging and awkward that by the time I was 23 or 24 all of my relationships had devolved into one night stands. I was incapable of real emotional connection and I knew it. (I'd like to point out that I went to Cal for a year after HS, could not connect to the process at all, and then bounced around JC's for the next four years. I learned an enormous amount but I could never focus it into a degree.) I had started drinking around 18 and it was all fun and games until this same period of turning 23 or 24. I started drinking heavily. My sole interactions with other people were the quiet physicality of the one nighters or pontificating endless amounts of trivia at work or from bar stools. Most people found me to be irritating. My life collapsed over a period of years. On October 30, 1989, I got sober. Then the challenges really started. Several aspects of my life improved but in an interesting and not uncommon irony, I was thrown back to the social skill level I had as a teen. I was painfully shy and had only my ability to focus with incredible intensity on a couple of subjects to fall back on. It was a halting road to improvement. So in 1998, I'd been working as the facilities engineer for a group of SF Bay Area health clubs for about 8 years, idling my time in a job that did not really use my knowledge or my capacity to really command a subject if I was truly motivated. I found a Mercury News on the floor of the San Jose club one day and idly glanced at the section on top. I was a voracious reader of newspapers and couldn't pick one up without at least looking at the headline. It was a story about Asperger's. I had never seen the word before so my interest was piqued. I started to read. I could not stop. I stood in one position, motionless, for who knows how long reading this article. My mind was truly blown. I couldn't believe that the hodgepodge of character quirks, malformed relations with others, learning patterns, vocal patterns, perceptions, or lack thereof, misread social cues, intense reliance on memory and knowledge, rocking, etc. that I had fully inventoried throughout my life had a single name. Asperger's Syndrome. Even then I had strong doubts that I was suffering from some one specific thing like this. I went to the bookstore the next day and bought two books on the subject. They described my experiences and when I took the tests they contained I was way up in the spectrum, not even close to questionable. I filed this information and kept my eye on stories and resources concerning it without getting too far into it. I think it was some form of anxiety that prevented me from going further. About a year after the initial discovery I was talking to a friend who was also an M.D. I mentioned it to him. His immediate question to me wasn't to doubt my self diagnosis, it was to ask me what I would propose to do about it. I said I didn't know. He said, "Peter, you are 42 years old. You have spent your entire life adapting to this. The syndrome is real, I know you well enough, but at this point understanding is really far more powerful than direct treatment. Learn about it. Find people you can talk to about it. Knowing who you are and knowing you are not alone are powerful forces in life." In my particular case it was brilliant advice. Over time I was able to lay to rest many negative life long convictions I had about my "weakness" or "weirdness" that my work in sobriety had failed to alleviate. I still struggle with interpersonal relations but I have been, by honoring my true self and by being authentic with others, able to develop deeply meaningful relations with others. I got into tech not long after that conversation and discovered my professional calling, a lot of people who get me, and a productive life that uses the full force of my mental skills. Due to the astronomical leaps in self-awareness that come from living a life in sober circles, and due to the knowledge of my foibles related to Aspergers, like Betsy, I have worked extraordinarily hard to assimilate into the world. I too am amongst the best in people skills at my job. That alone never ceases to amaze me. If only they knew what was going on in my mind. :-) I look forward to much more interaction in this topic and learning more about some of the important women in my life who I know are Asperger's borderline at the very least. I also plan on learning more about myself and to continue the task of living comfortably with who I am. Rudy, thank you for your dedication this topic. You are a treasure. I will be getting your other books asap.
Steve Silberman (digaman) Thu 28 Oct 10 17:16
Wow, Peter. Thank you, thank you, thank you.
Linda Castellani (castle) Thu 28 Oct 10 20:19
<scribbled by castle Fri 29 Oct 10 19:45>
Steve Silberman (digaman) Fri 29 Oct 10 08:23
A thoughtful link on self-diagnosis, peer diagnosis, and other "unofficial" diagnoses: Who can call themselves autistic? <http://www.autistics.org/library/whoisautistic.html>
Sharon Lynne Fisher (slf) Fri 29 Oct 10 09:10
I was interested in the parts about Asperger's daughters and moms. It may be later in the book, but is there anything about 'how to raise an NT child as an Asperger's mom'?
David Albert (aslan) Fri 29 Oct 10 09:10
Rudy, one thing I was hoping to find in the book was tips for teachers, but perhaps I can ask you here. What would you recommend teachers look for, do, or understand, when it comes to the question of girls with Asperger's who may not have been diagnosed as such?
Rudy Simone (rudysimone) Fri 29 Oct 10 09:28
uber-muso-- I loved your eloquent, poignant account of discovering Aspergers. Thank you. Steve, I do have letters from doctors verifying my Aspergers; because of my now extensive writings about my life and appearances on the internet and autism conferences, I didnt have to go through the usual channels because I am known by so many doctors. For those who dont know, diagnosis is based on observation and anecdotes, there is no blood test or anything conclusive. No one on the spectrum who has met me has ever doubted my diagnosis. It seems to me a lot of NTs have spectrum traits that may make them downplay the syndrome (its not a disease). What we are talking about when discussing spectrum people, comes down to number of traits as well as the frequency and intensity of their occurrence. Everyone will visit at some point, but we live there. As for the necessity of diagnosis, or the impact of it and the relevance of AS itself, Asperger Syndrome affects every area of life: friendships, self esteem, education, employment, finances, relationships, parenting, our mental and physical health. Without diagnosis, acknowledgment and support these things all suffer. As a jazz singer, my role models are Billie Holiday and Ella Fitzgeraldemotion and honesty as well as brilliant phrasing from Billie, range and purity of tone from Ella. There are many more but these are my main gals. The better I get at my craft, the more I love going to hear instrumental jazz, particularly old school. Watching live jazz is like watching several talented painters paint a canvas in the air, right before your eyes. Then they wipe it clean and do it all over again with each song. Its beautiful. As for comedy, There are so many greats, both living and deceased. Of course, Dan Aykroyd is a hero, having come out of the Aspergers closet in an interview. Phyllis Diller was guileless and genuinely witty. I am undoubtedly influenced by Carol Burnett; I watched that show religiously. Lisa Lampanelli is shocking, brilliant and one of my favorites. Lea Delaria made a big impact on me in the nineties, because I let her get on top. Just kidding. Seriously, she is one of the only jazz singer/comedians I know of and shes great at both. Speaking of tests to prove you are gay, Steve, Lea made me hold up my nails at one of her shows to see if I was gay or not. She decided that I swing based on my shorties. David, that is a good question. Kids with Aspergers, and probably girls in particular, need a friend, need mentors. Temple had Mr. Carlock (he wasnt professor in real life) as well as a strong mother and supportive family. I know that I have very fond memories of a couple of teachers that supported my precociousness and gave me encouragement and special projects. I had other teachers that made fun of me, that called me a know-it-all, and that was very hurtful. It also fosters an atmosphere of intolerance in the classroom. AS or not, if there is a kid who's just not fitting in, for whatever reason, you can pretty much bet they need a friend and things to occupy their time in a constructive way. School was so damn scary for me that I still had nightmares about it until a couple of years ago.
Rudy Simone (rudysimone) Fri 29 Oct 10 09:33
Sharon I do give advice on raising NT kids. We need translators, someone to explain to us that it is normal for girls to want to spend money getting their hair done or that I should go out of my way to see her in her prom dress. I got yelled at after the fact, rather than guided before, and I have guilt and some regrets and I'm sure I've hurt my daughter's feelings. Find a non-judgmental family member or friend to help you in this department, to give you gentle pointers.
uber-muso hipster hyperbole (pjm) Fri 29 Oct 10 09:38
"I know that I have very fond memories of a couple of teachers that supported my precociousness and gave me encouragement and special projects. I had other teachers that made fun of me, that called me a know-it-all, and that was very hurtful." Word for word description of my experience!
Steve Silberman (digaman) Fri 29 Oct 10 09:40
> emotion and honesty as well as brilliant phrasing from Billie, range and purity of tone from Ella. Perfect. I also throw Betty Carter into my own mix. I saw her a bunch and her best performances were time-stopping. Plus, she could write her own tunes, like "Droppin' Things" (which I love on the record of that title because she counts off the tune in an impossibly fast time at first, but the band is on it!) > Lea Delaria made a big impact on me in the nineties, because I let her get on top. If nothing else, this line made this whole interview worthwhile <grin>. > It seems to me a lot of NTs have spectrum traits that may make them downplay the syndrome (it's not a disease) Yes, a fascinating observation! (For those who are not familiar with the lingo, "NTs" are "neurotypicals" -- non-autistic people.)
Peter Meuleners (pjm) Fri 29 Oct 10 09:52
Rudy, I wanted to followup on a silly question I asked earlier that got lost in the shuffle. What do you think of the TV series "Bones" with the character Temperance Brennan as played by Emily Deschanel displaying several Aspergers traits? (Btw, I changed my pseud to my name to avoid confusion.)
Rudy Simone (rudysimone) Fri 29 Oct 10 14:02
Peter - I don't have cable. I refuse until they undo the damage Ronald McReagan did by de-regulating the airwaves and now they have too many commercials. I have netflix streamed to my TV, and I find things on the internet. I even saw the Temple Grandin bio on a pirate site a day after it came out. It had porn ads all around it, a fact which made her giggle when I told her. I miss a lot of stuff but I can't take in too much pop culture. It clutters my thinking and makes me lose who I really am. If a show is timeless, I'll find it later. I'm currently watching every episode of Fraiser online in chronological order and am getting closer to the end. I'll need a new obsession.
Peter Meuleners (pjm) Fri 29 Oct 10 14:07
I understand your position on that. If you ever get the odd chance you should check it out.
Peter Meuleners (pjm) Fri 29 Oct 10 14:19
Temper Meltdowns and "Hurricane Rudy", as described in chapter 17, are very familiar territory for me. Can you describe your personal experience with this and what tools you have in place today to cope with it?
Julie Sherman (julieswn) Fri 29 Oct 10 20:11
From off-WELL reader firstname.lastname@example.org: This quote got my attention: "I do remember the moment I realized I was no longer attractive. It gave me some relief, actually. Widders" Of all the things that I have had to deal with as a probable Aspie (I have chosen not to get a formal diagnosis because it would be detrimental to me at this late date), the whole 'attractiveness' thing has given me the most grief in my life. As a young woman, I quickly learned that my lack of ability to 'read' intent, take people at read face value and be 'nice' was going to be used against me. My being 'nice' to guys was often misread as a come-on, and I had several very harrowing situations with men because of this. I eventually stopped dating and trusting men entirely. This really saddened me, because I am more 'guy-like' than 'lady-like' in the way my mind works. Happily, men who did manage to see past my gender often became great friends. I've since learned how to 'read' men (and people in general), and have consciously worked on not giving off the 'wrong' signals to them. Instead of a smile, I'll raise an eyebrow, act calmly Vulcan. I look them directly in the eye and use silence to my advantage. I am kind to them, instead of nice. And kindness means not putting up with crap or being a clueless, pliant doormat. They quickly find better targets. I wish I had this particular discernment as a young woman on my own- and if I could tell young Aspie women anything it would be this: Learn how to read people. It's not hard to do. Look for patterns. Listen for tones. Learn how you get manipulated, and turn the tables. Make sure you have trusted friends who understand your particular blind spots and pay attention to them. Men are not the enemy, but sometimes they are not your friend, either- no matter how nice they seem to be. That said, I often think of myself as a third gender- not really male or female, but an intelligent being inhabiting the default somatype of this species (which is female- males are 'made' with testosterone at a critical moment in early gestation.). I was never interested in many of the things girls were 'supposed' to be interested in- didn't like a lot of 'girly' stuff, and actively fought my mother when she tried to 'doll me up' - even cutting off curls she'd rolled into my hair or deliberately dirtying 'nice' clothes so I could not wear them. But I didn't want to be a boy either- I just wanted to play with their stuff- it was much more interesting. Babies were boring. Tape recorders were not. I remember begging for electronic breadboards or chemistry sets- and getting tea sets and dollhouse furniture. I wanted a crystal radio. I got a radio-cassette player that I had to share with my sister. I did finally get a microscope- which was my favorite toy ever. My disinterest continued through my teen years- I was indifferent to the lipstick my mom gave me at age 13, declined to have a 'sweet sixteen' party, never was 'boy crazy', and refused date, to go to dances or the prom. My mother could not understand- and neither did my peers- like many others, I went from 'cool' to outcast as soon as the estrogen started flowing. I hoped to stave off my own menarche through sheer force of will, but it landed a month before my 14th birthday. Mom actually took me to a psychologist to find out what was 'wrong' with me. The psychologist gave me tests, which revealed that there was nothing at all wrong with me- and told my mom I was actually a frustrated prodigy. She told my mom to let me do my own thing- and she finally did. I was- and for the most part- still am- indifferent to my attractiveness. I refuse to wear warpaint or drag (which is how I view most female cosmetics and clothing- they feel like costumes to me), despise most 'feminine' shoes, and keep myself neat and clean, but otherwise un-messed with. Some of this is my sensitivity to scratchy fabrics and stuff on my skin, some of it is because I simply cannot fathom why someone would want to put paint on fingernails, totter around on badly engineered footwear, or change the color of their hair. I dress comfortably- and unisexually. If I could do so, my wardrobe would consist of jeans or khakis, and the majority of the t-shirt inventory of "Think Geek" "Tee Fury" and "Threadless". My footwear would remain loafers, Converse, or comfortable combat boots. My minimal eye makeup would vanish, and I'd 'go albino' everywhere, not caring that I look like something from another planet. (I have albinism- my hair, eyebrows, and eyelashes are all white or white-gold.) The irony of this whole attractiveness thing is that people tend to still peg me for 10- 15 years younger than my actual age- sometimes more. Folks still place me in my early to mid-thirties- and I just turned fifty. This totally floors me. But I guess I still give off a 'Ma'am' vibe, because the younger men I deal with are sweet and polite, but they are no longer trying to proposition me. That particular part of my life is gone, and I could not be happier about it. Sure, I still turn heads- but I am no longer giving people whiplash.
Julie Sherman (julieswn) Sat 30 Oct 10 08:02
Sorry about the topic getting frozen, not sure how that happened. Alll fine now.
Sharon Lynne Fisher (slf) Sat 30 Oct 10 08:42
ah, ok, just sent email to <digaman> inquiring. anyway, I had just read #47 and was going to post: my sistah! except I've never been conventionally attractive.
Rudy Simone (rudysimone) Sat 30 Oct 10 08:48
Peter, Re: Temper Meltdowns and "Hurricane Rudy": I had removed myself pretty much from society by moving to a rural community and being a self-employed writer with few social and sensory challenges. But when I moved back to an urban environment and in with my partner, I realized I wasnt dealing with overstimulation very well. There were nights where my house resembled a Greek wedding there were so many plates being smashed. After damaging a hard wood floor and scaring the crap out of my boyfriend, I thought hmmmm, maybe theres a better way to deal with anger. I do some basic things; try not to drink too much, I do yoga a few times a week, dont overcaffeinate, I try to talk about issues that are bothering me with my partner as they arise rather than letting them build up. In order to do this, Ive had to learn to identify my feelings which is difficult for Aspies. Ask us HOW were doing and well usually tell you WHAT were doing because that is what is important. But with the hypersensitivity of autism, it is crucial to become aware of feelings, where they are coming from and what they are. Temple told me to convert my anger to crying, as I mentioned in an earlier post. There are people I need to stay away from, or I will melt down quickly. Some man in a restaurant was being anti-Obama and he pointed at me and said she voted for him which flipped my switch and right then and there I said "if you point at me again, youre going to have a big problem on your hands, with that crazy look in my eyes which I get. These things can be funny to talk about but they are actually quite dangerous. I cant go out too much, I have to stay home at least two days a week and cocoon to keep myself level. We can be quite ego-centric, aspies, so I have to watch my pride as well. Somebody talking during my show, loudly, can really tick me off. So can arrogant club owners. I tend not to sleep well on those nights. Look up the Markram theory of autism. Were hypersensitive, always will be. Awareness is the first crucial step.
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