Inkwell: Authors and Artists
Juile Sherman (julieswn) Mon 25 Oct 10 18:16
This week in Inwell.vue, we welcome Rudy Simone, author of Aspergirls: Empowering Females with Aspergers Syndrome. Rudy Simone is an Asperger Syndrome author and consultant, novelist, screenwriter and a Jazz singer/comedienne. She resides and performs mostly in the San Francisco Bay Area, but speaks on Asperger syndrome throughout the world. Her books, talks and websites supply positive information and support to individuals, families, AS groups and professionals. She is the author of Aspergers on the Job: Must-Have Advice for People with Aspergers or High-Functioning Autism, and their Employers, Educators, and Advocates with a foreword by Temple Grandin (Future Horizons 2010) and Aspergirls: Empowering Females with Aspergers Syndrome, as well as 22 Things a Woman Must Know if She Loves a Man with Asperger Syndrome (Jessica Kingsley 2009). Her forthcoming novel The Fool Orsath the Singer is Part One of a YA fantasy trilogy. She is also a professional blogger with Psychology Today. Rudys goal is to help other Aspies tap into their talents and special interests and fully engage with life, without letting the challenges of autism prevent this from happening. Web sites: www.help4aspergers.com www.RudySimoneSpeakeasyJazz.com
Julie Sherman (julieswn) Mon 25 Oct 10 18:19
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Julie Sherman (julieswn) Mon 25 Oct 10 18:21
Leading the interview will be Steve Silberman, our own <digaman> on the WELL: Steve Silberman's articles on science, literature, and music have appeared in Wired, the New Yorker, GQ, Nature, Salon, the Shambhala Sun, and many other national publications. He was the co-producer of the Grateful Dead's box set "So Many Roads (1965-1995)," and co-wrote "Skeleton Key: A Dictionary for Deadheads" with David Shenk. In the 1980s, he was poet Allen Ginsberg's teaching assistant at Naropa University (naropa.edu). A long-time conference host on the WELL, Steve lives with his husband, Keith, in San Francisco. Welcome to Inkwell.vue Rudy and Steve!
Steve Silberman (digaman) Tue 26 Oct 10 11:28
Thanks, Julie! I'm very honored to have Rudy Simone here to talk with us. I love her new book "Aspergirls," which gave me a lot of insight into the challenges that women on the autism spectrum face, and even beyond that, offers insight into what *any* woman who doesn't fit standard gender roles faces, including so-called "neurotypical" (non-autistic) women. It's important to mention that I also have a new blog on the Public Library of Science called NeuroTribes that talks in part about autism and neurodiversity. I have a new post this morning that goes into depth about Rudy and her book: http://blogs.plos.org/neurotribes/ (If you're reading this after the day this conversation went live, please check the "Recent Posts" list under the search button to find the one about Aspergirls.) It feels particularly apt to be talking to Rudy now, because like many people, I was deeply touched by the recent HBO biopic of Temple Grandin, an autistic woman who had to endure a lot of bullying in school, as well as prevail in the face of now-discredited theories of autism being caused by bad parenting and other psychological factors, to become one of the most influential animal-behavior experts in the world. One of the most groundbreaking aspects of the film, I felt, was that instead of being filmed from a neurotypical perspective, the filmmakers often took Grandin's point of view, so that many of the daily stimuli that can trigger sensory overload in autistic people -- such as the beating of a ceiling fan or the squeaking of a magic marker -- were rendered with excruciating vividness. I'm curious, Rudy -- what did you think of the Grandin film, and what feelings did it bring up for you as you watched it? Also, one of the differences between you and Grandin is that she was diagnosed as having autism a lot earlier in her life than you were. According to you and other authorities on the subject, diagnosis in mid-life is not at all uncommon for Aspie women. What is it about Asperger Syndrome in women, and about gender roles in general, that results in many women not realizing that they're on the spectrum until mid-life? And how was that process for you? Did it cause you to reexamine your life previous to the diagnosis in a new light?
Steve Silberman (digaman) Tue 26 Oct 10 12:23
Julie, if you could also post information here for off-Well people who want to join is and ask Rudy questions, I'd appreciate it. Rudy, I also want to ask you one more question. Feel free to answer these questions in any order you please and ignore questions you don't want to deal with. One of the things I've heard people say to some folks with Asperger Syndrome is, "Oh, your autism is obviously not *that bad.* You can walk, talk -- even sing -- and pass for normal." They mean these things to be a compliment, but how do they come across to an autistic person? What do comments like this say about our ideas of what Asperger Syndrome is? I know it's not an exact parallel, but when people say to me, "Wow, Steve, I would never have guessed that you're gay -- you don't seem gay," I feel really weird, as if I've been insulted and paid a compliment in the same sentence. So what do "compliments" like "you don't seem that bad" seem like to someone on the spectrum? If anyone else reading this wants to answer that question to, please speak up! This is a collective conversation. Please join in.
Steve Silberman (digaman) Tue 26 Oct 10 12:24
(Sorry, in the first sentence of the last post I meant to type, "join IN and ask Rudy questions.")
Rudy Simone (rudysimone) Tue 26 Oct 10 16:53
First of all, I absolutely love the Temple Grandin film and it deserved all the accolades and honors it was awarded. It was a highly emotional experience for me, but I think her story has elements virtually everyone can relate to. No one likes to be misunderstood, doubted or underestimated. But yes, I related to her fixation on patterns, her sensitivities to ordinary stimuli, her social awkwardness, her ingenuousness (shes still like that) and to the bullying and ostracizing which she cruelly suffered. I wish I could say I related to her passion for science and invention, but I am quite familiar with the way she taught herself to do anything she was interested in. That is the autistic way. For women who are not classic autistics, who are not as obviously affected, whose verbal skills are on a par with or beyond their peers, we often remain in the autism closet for varying lengths of time. A little girl spinning, rocking, fixating, obsessing may not even be considered unusual, and she may even be gifted in some ways, so that is what is noticed more than the deficits and struggles. And then of course as we get older, females have a bit more natural curiosity to solve the social puzzle, to try and understand Relationships. Plus, we tend have more social pressure to behave appropriately and since were fairly adept at mimicking, we may remain stealth to everyone, even to ourselves. I know from my own experience, I kept waiting to grow out of it but you never do. I grew out of mutism and seizures, but not the rest of it. And some of the sensory stuff has gotten worse. The process of becoming aware that I was on the autism spectrum was a slow unfolding. I started down the Asperger path in search of an explanation for my thenboyfriend, who was undiagnosed, or rather misdiagnosed. Then it was a whole year of hmmm, then ah-ha and finally eureka moments. Most of the info on women I gleaned from books whose primary subjects were men, and there would only be a paragraph or two per chapter highlighting how the same traits might manifest in a woman. My first AS book was actually published before I knew I was on the spectrum. And yes, of course I now get to re-frame my whole life in a new light. Im not nostalgic, nor am I bitter, but life was lonely, hard-edged and painful. Its still hard but better than it was because at least now I have an explanation, and I can share that explanation with others. As for the 'gay' parallel, I love it and I am honored by it. I use the closet reference a lot, for its relevant to anyone who has to keep their true self hidden. That is never good. Like others, I do believe that autism awareness, autism rights, i.e. the right to live unharassed, to hold jobs, go to public places, act in accordance with our most authentic selves, is a movement whose time has come and it is a natural progression from other civil rights movements. Saying to someone you dont seem like you have aspergers invalidates that persons experience. Its not meant to insult, but insult it does. Its like me saying to someone whos been through a wargee, you dont seem like you were ever in a battlejust because theyre not bloodied and bandaged or shell-shocked at that moment. Am I supposed to carry all my autistic traits on my sleeve for the world to see all at once? If I did, I wouldnt be very functional now would I? Its such a strange dichotomy. Often people say to my partner Rudy doesnt seem like she has Aspergers but then in another breath they are asking whats wrong with Rudy? when I act in a way they dont understand. People try to put things into frameworks that they can understand, that they can relate to. As I always say, non autistic (neurotypical) people will have some of the same experiences we doits about quantity, frequency, and intensity. Everybody visits, but we live there.
Steve Silberman (digaman) Tue 26 Oct 10 19:27
Wonderful answers, Rudy, thank you. How did you become a writer? What other writers do you feel have done justice to the complex subject of autism? Besides your own new book, are there any books that you could recommend for people who are unsure if they're on the spectrum themselves?
Julie Sherman (julieswn) Wed 27 Oct 10 09:27
(For our readers who are reading this off-WELL, please send your questions to email@example.com and we will post them.)
uber-muso hipster hyperbole (pjm) Wed 27 Oct 10 09:42
"Im not nostalgic, nor am I bitter, but life was lonely, hard-edged and painful. Its still hard but better than it was because at least now I have an explanation, and I can share that explanation with others." That is my exact experience. I am really looking forward to the rest of this conversation and delving more deeply into the book and into some of my own experiences from from the male side of the equation. I am already seeing many parallels. You are a treasure. Thank you for doing this. (You too, Steve. :-)
Rudy Simone (rudysimone) Wed 27 Oct 10 09:49
Everyone is a writer on some level. I did some dabbling through the years, won a contest when I was a kid, wrote 100+ songs in my teens and 20s, and boxes of journals in my 30s. My first pro job was working for the guys in ghost hunters (TAPS), writing for their magazine. I became an editor around the same time (about 2005). My first published book (22 things) just exploded onto my computer, the bulk of it written in two days, padded out in a few more. It was the result of frustration with my Aspergian partner, and some early research Id done on Aspergers. It was an informal and controversial book, but I receive emails every week telling me its helped people so I make no apologies for it. Ive finished three more since (Aspergirls, Aspergers on the Job and a novel), and I have a screenplay making the rounds at the moment. None of these came as easy as the first, taking 1 6 years apiece to finish. I also spend a lot of time now writing for my jazz and comedy act. When I speak to people they dont seem to get me, but when I write, they do. This is also a common trait in autism because we get overwhelmed in social situations, dont know what to say, dont read social cues, etc. People who dont know I write think I have nothing to say of any importance or worththey think Im ditzy and a bit stupid. I know that because Ive been told that and because I never get included or invited into gatherings or conversations. There are people with autism who cannot speak at all, or who can barely speak, yet can write beautiful stories or journal their thoughts. Without those writings, youd never know the depth of their experience. Some create incredible artwork, or have astounding musical ability. In a physical parallel, most of us suck at ball sports that require bilateral or hand-eye coordination but swim like dolphins; or we cant do a choreographed dance to save or lives, but alone we are Isadora Duncan. Its the way we process stuff that makes certain things difficult and the presence of others exacerbates that. (The exception to this is when we are monologuing or performing.) If you think you might be on the spectrum, Im told that Aspergirls is helpful for both men and women, surprisingly. Of course you have to do a lot of research, take the AQ (autism quotient) test which you can find online and then get a professional opinion, from someone who KNOWS Aspergers as a whole, not as the sum of its parts. My website has two pages of traits and gets a lot of hits. Im told it has one of the most comprehensive and accurate lists you can find. I havent read as many AS books as I probably should have, simply because when I am writing one, I dont want to be influenced by someone elses work and Im always writing. But I think Liane Holiday Willeys Pretending to be Normal is a great one for females as are Donna Williams books, and Aspergers from the Inside Out by Michael John Carley for males, although all can be relevant for both sexes. Temple Grandins Thinking in Pictures is just like her, brilliant, captivating, guileless, and deeply affecting. I wrote the foreword for a wonderful book called Aspergers in Pink I dont like the title but its a great book for parents with school-age children on the spectrum.
uber-muso hipster hyperbole (pjm) Wed 27 Oct 10 09:59
Love Donna Williams. I will write a mini bio relating to Aspergers later today when I have more time.
Sharon Lynne Fisher (slf) Wed 27 Oct 10 13:15
I'm about halfway through the book. I remember when Wired, I think it was, did a self-test on ADD and all my friends read that and decided they were ADD, and then a while later an article came out (Steve's, wasn't it?) about Asperger's and all my friends read that and decided they were Asperger's. :) (I lived in Silicon Valley at the time and hung out with a lot of computer geeks.) Have you looked at co-morbidity of ADD and Asperger's? How do you see them as similar and different? I don't know whether I'm ADD or Asperger's or both or neither. I've never been diagnosed nor gone to any effort to be. On the other hand, I do have some of the traits of each, and most guys I've gone out with have been one or the other or both, so I assume there's *something* about me that makes such guys seem appealing or otherwise familiar. My current partner believes he's Asperger's and his nephew is pretty severely Aspergers; frankly, I think his dad is on the spectrum as well. And I'm very interested to read your 22 Things book. :) Anyway, it was interesting to read the book and in the process run across several descriptions of traits that Asperger's women and I share. Having now been diagnosed with Asperger's, what change has it made in your life? A male friend, former partner, had decided a while back he was Asperger's and made the decision to be diagnosed (which he was) because he was having issues at work and he felt that having a diagnosis would help him use the Asperger's as a disability (which for him it was) and to have them find ways to accommodate him. Are there advantages or disadvantages to being formally diagnosed? I'm also wondering to what degree *any* person of sufficiently high intelligence is practically be definition going to present as Asperger's, ADD, or both. Now that the conversation is started, I'm going to need to finish the book. :)
Steve Silberman (digaman) Wed 27 Oct 10 15:51
Thanks so much, everyone! Rudy has a gig today, but she will be back tomorrow. If you're on the Well, feel free to post questions, or email them to firstname.lastname@example.org. Sharon, the "AQ test" was published alongside my "Geek Syndrome" story, in the same issue. Frankly, I didn't even know it was going to be included and was a bit annoyed, since it didn't seem very rigorous, to say the least! Obviously, a real diagnosis requires a real diagnostician. But people do love taking self-tests like that, and I've had dozens of people tell me over the years that they became interested in autism after taking that test and scoring highly. These days, many people also diagnose themselves after having autistic kids. Rudy, I was struck by the fact that after you were bullied when you were a teenager, you stopped singing in public -- yet now you do it professionally. Do you feel like you reclaim some part of your personal power from the bullies by doing that? I have to admit, I haven't read your first book about having an Aspergian partner. If I'm not mistaken, your current partner is neurotypical (non-autistic). I'm sure every relationship is unique, and that you can't make generalizations. But does the "texture" of a relationship with another Aspergian feel very different from a relationship with an NT?
Rudy Simone (rudysimone) Wed 27 Oct 10 16:32
Hi Sharon - (I have some time before my gig, so I'll address your questions now) There are definite advantages to a diagnosis, but not always in the form of official benefits and protection. For us, it is really about validation. It is still very difficult for adults and female adults particularly, to receive a diagnosis (it usually happens after their child does). I am compiling a still very slim list of doctors that do diagnosis adult women and who come recommended. It's still not even big enough to publish. I had doctors scoff at me when I told them I thought i had AS, but now I have what I call a "peer diagnosis". When you can sit and chat with some of the world's top authorities about your Aspergers, and they don't doubt for a moment you have it, then it's kind of moot to pay my local shrink $2000 to do so, especially after she told me she'd run every test in the book to make sure I didn't have it. She also said she'd interview my mom, who's in her seventies and can't remember my real hair color, much less my childhood. That is why I wrote Aspergirls, to help doctors like her understand what we go through and how our traits manifest, and why I chose mostly officially diagnosed women to interview. Which brings me to your question, how has it changed my life? Well, it became a personal calling, it was one of those real "this is fate" things for me. I spend a lot of time writing about Aspergers, answering emails, doing interviews, traveling, doing presentations. But I try not to let it become my main vocation. Because we are so obsessive, we can become so with Aspergers to the exclusion of all else. I see it all the time. It's the backdrop, not the play. I don't know much about ADD. god only knows why that exists-- is it just the stress of modern life? All the myriad, invisible waves and signals flying through the air? I don't know. But I do think that the absent-minded professor qualities of autistic people can be mistaken for ADD. But really we have excellent hyperfocus, so I should think they'd be mutually exclusive. I always raise an eyebrow, at least inwardly, when someone says they are diagnosed with both. ASDs comprise so many traits, you don't want to say you have a syndrome for each one. You'd need a hell-uv-an over-sized business card.
Betsy Schwartz (betsys) Wed 27 Oct 10 17:32
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Betsy Schwartz (betsys) Wed 27 Oct 10 17:33
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uber-muso hipster hyperbole (pjm) Wed 27 Oct 10 17:42
Great post that I identify with a lot. The test that's making the rounds on Facebook? I got a 43. I have taken several other tests and come in high every time.
Julie Sherman (julieswn) Wed 27 Oct 10 18:31
From off-WELL reader Nicole Nicholson: I have a question for Ms. Simone. In your travels and your experiences meeting women on the spectrum, have you met very many women of color on the spectrum? One of the reasons I started my blog, Woman With Asperger's, was that I didn't see too many portrayals of Aspergians that looked like me, in terms of either gender or ethnicity (I am multiracial of African, European, and Native American ancestry). Also, autism is already misunderstood by the general public and even more so I think in ethnic communities in the Unites States, so I wonder how many of us end up being diagnosed or even considering autism/Asperger's as a possibility. What are your thoughts on this?
Sharon Lynne Fisher (slf) Wed 27 Oct 10 21:05
Actually, people with ADD can have excellent hyperfocus, sometimes to their detriment. ADD is more a case of inability to control focus rather than inability to focus. When I asked how it affected your life, yes, I read that you started writing books and so on. I was thinking more in the sense of outsiders. Do you get different responses now -- 'oh, it's okay, Rudy has Aspergers' -- when before they were impatient with some of your differences? Have you gotten access to treatments or programs that you didn't have access to without diagnosis? that sort of thing.
paralyzed by a question like that (debunix) Thu 28 Oct 10 08:43
Just catching up with this topic this morning, and after reading the "list of female asperger's traits" on the rudy's blog linked above, I was just sad to find out that 'Aspergirls' is not available in a Kindle edition, because that list is ME.
Rudy Simone (rudysimone) Thu 28 Oct 10 09:13
Steve, you asked me if I feel like I reclaim some part of my personal power from the bullies by performing: Yes and no. I never stopped singing altogether but the joy, the gregariousness, spontaneity, trust in people, that left me. Once a child realizes that the world is not safe, its difficult to undo that belief. I got my first professional singing job when I was only 17 years old in Buffalo, NY (I lied about my age) and became very popular very quickly and then I felt like I had revenge because my picture was in the paper all the time, etc. (I had a different name back then.) But the Aspergers made me an easy target for a Svengali-like boyfriend/guitarist, people confused me, travel overwhelmed me, club owners frightened me and I had many meltdowns and nervous breakdowns. That gig lasted a few years and Ive only done sporadic singing since, nothing of any significance (until now, I hope). Im smart enough to realize that performing doesnt make me better or special and certainly doesnt make me richer so it is no longer about personal power. Im all about the craft of singing and being funny. I do still get hurt by inattentive or unappreciative audiences too. I had a couple of very noisy tables last night that dont realize Im anyone whos anyone. They didnt get my sense of humor either. When that happens, I still struggle with emotions and meltdowns. People with autism are emotionally like children, that is why we are so guileless, and we remain that way, we mature emotionally much slower than everyone else. I dont melt down in public so much anymore, but I go home and cry and have nightmares and melt down in my dreams, scream, yell, throw things. Thats what happened just because I had a shit gig. The bullying I endured was quite significant. I was beaten in front of a crowd, yes, but I also was in a bunch of fistfights following on the heels of thatonce people see you are an easy target they all want to take a crack at you. And because of mutism and the paralysis that steals over your limbs, I was even stabbed with a compass in art class and didnt even say ouch even though it was deep in my thigh. That boy killed someone a year later with a knife, so it was a real stab too. Steve, yes it is quite different to be in an AS/AS relationship and an AS/NT one. My current partner acts as a sort of social translator. He explains why people say and do the things they do, because often these exchanges and rituals seem either unnecessary or just mysterious to me. I ask him for advice on how to approach people or tell them what I need to tell them, because I can often be abrasive. Sometimes I think hes too touchy feely with other peoples emotions, and we have plenty of debates about things, but we balance each other out very well. When I had an AS boyfriend, we had a very pleasant, cocooned sort of life, work, play pool, eat, drink, watch a film. That was a much simpler life but he wasnt into our relationship as much as I was and would often disappear for weeks. I couldnt stand that. But there are plenty of success stories on both sides. Betsy, I am curious about your comment It certainly doesn't feel safe to make it an issue at work, especially since AS is practically a job requirement in my field. Why then is it not safe? You feel it would be rocking the boat unnecessarily? I would like Aspergers to be so de-stigmatized, that a person can say I have Aspergers the same way they would say (at least in San Fran) Im gay. It isnt for attention, but rather, it just IS. How does it change anything? AS is not an excuse, nor to me is it a disability, but it is a reason. That is all. Uber-muso --I appreciate your comments. Nicole I have not read your blog 'Woman with Aspergers' that I can recall, Ill have to check it out. I have not seen many people of color at groups or conferences and those I have I believe were not on the spectrum, but were professionals in the field. I get many emails from women and some of them could be women of color, but somehow I think they might tell me if they were. Ive often wondered about that, but havent had a chance to look into it. How bout you? Have you met or heard from others? Sharon - Having a diagnosis has changed my self-confidence but not others perceptions so much, as I said, people still say "what's wrong with Rudy?" when I act 'funny'. Unless people are on the spectrum or make it a special course of study, they don't get it.
Rudy Simone (rudysimone) Thu 28 Oct 10 09:16
oh, I meant i scream, yell and throw things in my dreams, not in waking life so much anymore. But I used to have terrible tantrums. (anyway, my San Fran apt is too small to throw things! ) Temple told me to convert my meltdowns to crying. No one gets arrested for crying, she said.
uber-muso hipster hyperbole (pjm) Thu 28 Oct 10 09:34
I'm still working out a post of my experiences, the more you post the tougher it gets because I identify with you so much (and I thank you for that), but I feel compelled to ask a really shallow question. What do you think of the TV series Bones?
Sharon Lynne Fisher (slf) Thu 28 Oct 10 09:39
#20: I'm reading that list, and part of me is going, omg, that's me, more than half of that stuff I agree with, and part of me is going, but isn't a lot of that stuff true for nearly anybody? (I should mention that my boyfriend, who identifies as Aspie though isn't diagnosed, taught me the concept of people being 'matchers,' or more likely to agree with things, and 'mismatchers,' or people who are more likely to disagree with things. I was glad he explained that concept to me, partly because I'm a mismatcher myself, but also because mismatchers can be really damned annoying sometimes because you go show them something you're proud of and the first thing they do is pick at something, so it has kept me from killing him. :) Anyway, for both him and me, our first reaction to looking at something like your list is to find fault with it. :) )
Maria Rosales (rosmar) Thu 28 Oct 10 09:50
(That sounds like the famous distinction between "lumpers"--people who tend to focus on similarities--and "splitters"--people who tend to focus on differences.)
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