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Adults on the Spectrum Share Their Museum Experiences 01-29-13

Museum Access Consortium Workshop

Wednesday, January 29, 2013
Moderator: Michael John Carley, Executive Director, GRASP
Panelists: Svetlana Novozhenina, Kelly Brandt, and Charli Devnet on behalf of GRASP

Transcript:

Francesca Rosenberg:

Okay, let’s get started, I am Francesca Rosenberg, I’m the director of Community Access and School Programs here at MoMA and I also sit on the steering committee for MAC. And I‘d like to thank you so much for coming out this afternoon to the Museum of Modern Art to this Museum Access Consortium workshop. We are very honored to be joined today by representatives from GRASP, the largest organization in the world composed of adults who have autism. GRASP dedicates its work to improving the lives of adults and teens on the autism spectrum through community outreach, peer support, education and advocacy. The coordinator of today’s workshop, Cindy VandenBosch, will introduce our esteemed speakers and moderator for today’s session in a just a moment. I’d like to take a quick moment to introduce the Museum Access Consortium or MAC for any of you who may not be familiar with our group. It’s a volunteer based association that brings together individuals from the over a hundred cultural institutions from the metropolitan New York City area, as well as service organizations, educational institutions, design firms and consultants. MAC includes among its members people with personal and professional experience with disabilities and accessibility, through public workshops and opportunities for collaboration across the museum and disability fields. MAC strives towards disability inclusion and equal participation. We take as a basic tenant that increasing accessibility for people with disabilities increases accessibility for everyone. MoMA is a founding member of MAC and is pleased to host this workshop in conjunction with MAC and GRASP. MoMA has various offerings for children and adults on the autism spectrum and is always eager to learn more. And now I’m going to turn over the microphone to Cindy VandenBosch, who is the co-chair of MAC and is the coordinator of the workshop series.

Cindy VandenBosch:
Thank you Francesca and special thanks to the MoMA for hosting us here today. And special thanks to you for coming out for this very important workshop that is going to focus on improving the experiences at cultural institutions for people who have autism. And like Francesca said MAC really does consider that these improvements have a ripple effect and improve the experiences of all visitors to our institutions. This workshop is part of a three-year-long workshop series that MAC has been hosting with partner organizations, and this specific workshop series is dedicated to providing a more welcoming experiences to people who are on the autism spectrum and their family members at cultural institutions in the greater New York Area. We are especially thankful to the FAR Fund and specifically Shirley Taylor for awarding MAC its very first grant, which supports this workshop series as well as the development and implementation of pilot programs for student groups on the autism spectrum at both the Museum at Eldridge Street and the New York Transit Museum. This workshop today is the fifth in our series of twelve focused on accessibility of museum with people with autism. And I see a lot of people here that were at the other workshops that we offered last year. How many of you came to these workshops last year, by show of hands? Okay about 80%. For those of you who were not able to make it I’ll just bring you up to speed. For our first three workshops last year, we brought in clinicians and seasoned professionals who have extensive experiences working with people especially youth, who have autism, including Irene Cavanaugh from Eden II School, Dr. Gil Tippy from the Rebecca School and Aaron Feinstein from Action Play and the Miracle Project. These workshops provided us with an introduction to autism spectrum disorders, the history of diagnosis, and various educational theories and techniques. The fourth workshop went from theory to practice. And that was when we brought together museum professionals, people from the disability services sector, and people who have experience with disabilities. We shared best practices with one another and documented those. So if you missed any of those workshops we have actually documented them and there are recordings that are available as well as transcripts and Power Points on the Museum Access Consortium blog which lives on City Access New York’s website. Before introducing our panelists, I’m curious I’m also wondering what kind of institutions are coming from the audience today. So how many people, by show of hands, are coming from a history museum or a historic site? So like a quarter of you. How many of you are coming from an art museum? Wow maybe half or more. A zoo, a park, or garden? What about from a university or college program? Okay anybody else? From a children’s museum? Great to have you here. That’s good it gives us a sense of where everyone is coming from in the audience today. And with the workshop kicking off the second year of this series we thought what better way to kick it off than with the voices of people, who are diagnosed with autism themselves and who love museums and are eager to share, and engage in conversation about their experiences and their perspectives, and not only visiting museums, but volunteering and working in cultural institutions.

I would like to thank Carolyn Halpin-Healy, Co-founder and Executive Director of Arts and Minds for putting MAC in touch with Michael John Carley, whose to my left over here, he is the Founder and Executive Director of GRASP and he recruited our other speakers, who are here from the GRASP network today, Kelly Brandt who’s to my right, Charli Devnet on the who’s down on that end and Svetlana Novozhenina, who is in the middle over here on my right. Our panelists today each bring important, unique and relevant perspectives to the table. While I’ll let them share more about their own stories and perspectives with you, I do have a few words to say about each panelist.

Kelly Brandt, to my right, lives in Manhattan and has been a volunteer and member of the American Folk Art Museum for over 10 years. Haling from a coalmining town in Pennsylvania she is a trained artist and received a BFA in painting, sculpture, and live figure drawing from Indiana University of Pennsylvania. She is an auditor for a company that owns Broadway theatres, and as auditing is a full time commitment for her, she still finds time to paint and exhibit, and of last summer her work was featured in a gallery in Italy. Yeah! She also has a very deep interest in art therapy and has volunteered in that field in the past.

Charli Devnet is over here sitting to the right-I guess it would be your far left, is employed as a tour guide at Kykuit, which is an estate that was home to four generations of the Rockefeller family in Sleepy Hollow, NY in the Hudson Valley. She is very passionate about her work there as we’ll soon discover. She lives in Croton-on-Hudson with two sweet cats, Boots and Heather and has a large pony as well.

Svetlana Novozhenina, who’s sitting in the center to the right, your left, lives in Brooklyn and is an immigrant from Russia. And has lived in the United States since 1997. She enjoys going to museums, she has a seven-year-old son. She is self-employed and has her own business selling t-shirts on Ebay and is working to expand her business. She has plans for blogging and websites, as she enjoys working from home.

Our moderator for today is on my left, your right. Michael John Carley received his bachelors from Hampshire College in 1986 and his masters from Columbia University, his MFA actually, in 1989. As the Executive Director of GRASP, he has spoken at conferences, hospitals, universities, and healthcare organizations. He has appeared in the media widely, most notably in The New York Times, Washington Post, The London Times, Newsweek on Air, ABC News, BBC News, Psychology Today, and On the Radio with Teri Gross Fresh Air. And I heard that when immediately, when I saw your name I remembered listening to that episode of Fresh Air . . . I know but I’m an NPR listener. NPR News also aired a twelve-minute story in June of 2006 featured Key and GRASP. Carley was also featured in the documentary On The Spectrum. His articles have been published in magazines such as Autism Spectrum News, Autism Spectrum Quarterly, and Autism Asperger’s Digest. His first book, Asperger’s From the Inside Out: A Supportive and Practical Guide for Anyone with Asperger Syndrome, was released in 2008 to humbling advance reviews. More recently he has finished his second book, The Last Memoir of Asperger’s Syndrome. Interestingly enough he was the inaugural Far Fund Fellow in 2003. So that was a very nice connection that we were pleased to discover when we first spoke to him. Until 2001, Mr. Carley was the United Nations representative of Veterans for Peace. In that time he was known primarily for his work in Bosnia and in Iraq as the project director for the internationally acclaimed Iraq Water Project. Prior to 2001 he was also a playwright who enjoyed 15 productions and 10 readings of his plays in New York. Along with his, then 4-year-old son, he was diagnosed with Asperger’s syndrome, in November of 2000. He lives with his wife, Kathryn Herzog, and two sons in Brooklyn.

On behalf of MAC and MoMA and everyone here, I’d really like to thank each and every one of you, for taking time out of your schedules, to invest the time, thought, and energy, and to share your personal experience at museums. We’re looking forward to hearing both about the experiences that have been positive and meaningful to you, as well as the visits that didn’t turn out quite as you had hoped. As audience members I think it is important to us, as there may be specific examples that will be mentioned, to remember and recognize that these examples are scenarios that could play out in any of our museums. And that what we are here for today, is to better perceive and understand what the visitor experience is like at our own museums and how can learn from these examples moving forward.


So recognizing that all of us in the room have a shared appreciation for the arts and a desire to make the arts accessible to everyone, we are here to listen and learn from your experiences and have a conversation about how we, and the museum, and the disability fields can better communicate and work together so that museums are indeed welcoming places for everyone.

I will close my introduction with GRASP’s vision as an organization as it inspired me and I believe it sets the tone for our collective purpose here today. GRASP seeks to “envision a world where all individuals on the autism spectrum are respected, valued, and fairly represented; where appropriate supports and services are readily available to those in need; and where people on the spectrum are empowered to participate in policy and personal decisions that affect their lives.” I know that I can speak on behalf of everybody here when I say that that is what we feel too. And hope that we can do our best to listen, learn, and work towards that vision of the world with you. Thank you.

Michael John Carley:
Thank you Cynthia. Thank you MoMA and Francesca, thank you MAC and Ken for your help, thank you FAR Fund. And thank all of you for caring about this subject. Obviously it is something that is going to be near and dear to us, but the fact that you were even considering making changes to accommodate individuals on the autism spectrum, more than what you already do, which to me from my armchair whatever, seems pretty noteworthy as well as noble. It is really appreciated. And I thank you very very much.

When we met for the first time as a group, just to sort of talk about the layout of this, there was a story that got told and I didn’t think I’d be telling it again to you, but in order to sort of outlay the importance of this particular forum, I’m going to share it with you. Cynthia disclosed that she had a background in anthropology. And I relayed a story, that I sometimes tell people, which can be maybe a funny joke to some people and to others an observation worth considering. But a lot of times we hear “What is the stereotypical job for someone on the autism spectrum?” And you’ll hear things like IT department, research analyst, somebody working in a lab, or if they don’t have a lot of educational background or maybe non-verbal something clerical or something where they are stacking or organizing etc. And a lot of that is true. It’s a little bit of a stereotype, as we all know every stereotype gets infused by some sort of kernel of truth, but also we make the ethical mistake of sacrificing possibility when we rely too much on probability. My joke is that all of these jobs that may indeed be part of the probability angle, to me don’t even compare to the idea that somebody on the spectrum whether you can talk or whether you look like us, or not talk, excuse me, is a natural anthropologist. Because you are always trying to study this really kind of weird culture that you ended getting dropped into, with people making behaviors and doing things that just don’t have any logical basis as far as your programming is concerned. And so while this is sort of a funny ha ha at one point, the way in which we learn is by observation. The better learners really intently study. They study behavior and they stare. And museums are one of the few places that really offer the opportunity to be able to stare at something that you are curious about and that you are interested in. The interest, I think, as you will hear from the panelist today, nobody questions that, especially when most of the autism spectrum is predominately folks, who are either math brains or visual learners, most especially Temple Grandin for thinking in pictures. And so that particular atmosphere is one that is rife for being an attractive place for somebody on the autism spectrum to go to. But because of primarily sensory issues, having to do with all 5 senses sometimes, as well as anxiety and the whole notion of crowds, it can be a difficult place. But I will let the fellow panelists share their examples with you, their own experiences then I’ll come back and maybe throw in a few of my own. Again I thank you again very, very, very much for taking this into consideration. So Kelly may I hand it over to you?

Kelly Brandt:
I used to do stand up comedy and I’ll try not to do any material, because that is not productive. What I was going to say is that I have a cousin, who is a police officer, and within the last 10 years they have had many reasons why they have had to become more sensitive to recognizing people on the spectrum. And in my neighborhood, one of the local police stations has a badge that they’ve created and I don’t know if it is used everywhere I’ve only seen in it in my neighborhood, but it is for people who are severely autistic. And it is so that the policeman can recognize who they are, where they belong, and there is a barcode they can scan to get a phone number. These are ways I think are very productive in my neighborhood and also in my family, because having my cousin being more aware of things. I recommended this book, and Michael Carley’s book is awesome too, this one was written specifically for people, who hoping to work with people who have Asperger syndrome and it explains some of the issues we might have. And like an example would be she has a very pragmatic approach to why lights, lighting in certain areas can actually stimulate bad behavior or uncomfortable feelings. Her idea is that natural light is very important, because it offers all the colors of the rainbow. It reflects all the colors. Whereas man made light only sometimes reflects certain colors and that can be very unnerving to people who are hypersensitive about those things. I have a godson, who is autistic, who is very very sensitive to sound. And so sometimes that is an issue.

I make less than $35,000 a year. I don’t see myself ever being in a position where I’ll be making a lot of money. I do enjoy going to museums and as a volunteer I have a pass that gives me access to most museums and which is very awesome and very generous. But I know that museums need to have income and need money to support you. So I was thinking that you know that there is the Free Friday Nights, and that has changed a lot. Like the clientele that show up for the Free Fridays used to be museum goers, people that, the hardy museum, you know who want to see the whole exhibit. I’ve noticed in the last few years, man of my co-workers, who are not normally museum goers, go there to get their drink on. Or they go to see The Scream, because you know they’re like, “Oh my God were going to see The Scream “, because The Scream is something everyone knows. What they’ll do is they’ll go to the museum; they’ll find The Scream and then go get their drink on. And it becomes more of a Friday night outing. You know where people go to pick up people. And there’s nothing wrong with that and I think it’s awesome, and I think that that is a wonderful way to get people into the museum setting. But for someone like me that becomes a hindrance; A, because it is at night, and I don’t have access to the natural lighting that would be coming into the windows that would alleviate some of the drama of the lighting that I don’t want to say offensive, but could affect people. And also the clientele like many times I am actually there to read all the little labels and to get up close and personal and see a the brush strokes and some, there are people there that may think it is a little strange. I have been in situations, where I didn’t realize that somebody was trying to pick me up and I didn’t pick up on the cues, because it something that you find the more you research is that many times we don’t express ourselves when we are uncomfortable. And we don’t pick up on cues that other people might pick up on more quickly than we do. And I’ve been rescued a few times by some very nice guards, museum guards, who recognized that I was backed into a corner. And I really appreciate it. I think that with awareness with museum staffers being more aware and conscience that there are people on the spectrum interacting, looking normal, I don’t like the word normal, looking typical. I think once people who get to know me after the first 20 minutes they are aware that I have a different approach to things and that my brain works a little differently than most people’s.

I used to work at Telecharge selling tickets over the phone-theatre tickets and one of the things they made us very conscience of was that words have double meaning. So somebody may say to you, “ I need to find a date for this show.” And in your mind you might think, “well I’ll go with you!” And that is not really appropriate. What they were meaning was February 15 or that sort of thing. Fred Gwynne, who was Herman Munster, wrote a series of children’s books and the books are all in homonyms and how words have double meanings and how that confuses people. And one of the reasons that I may have a blank look on my face is that many times my brain goes to the wrong meaning for whatever reason, out of context. I’m busy deciphering wait what is this person saying to me? It’s not a bad thing but it takes me a little longer. People who know me are amused by it. And when I was doing Stand Up comedy it was very amusing. And sometimes I’d say things that I didn’t know were funny or why they were funny until a day later when I was like “oh that is why they were laughing.” It’s not that I walk around thinking people are laughing at me. Sometimes they actually are. But that doesn’t really bother me, because I’ve learned how to make people laugh when I know they’re laughing and why. And sometimes people just laugh. I sometimes laugh inappropriately. This man I spend time with and go out with, he laughs inappropriately and I understand why he is laughing and I act as a buffer between him and other people. Just recognizing that people have a different approach or different way of comprehending things.

I love reading all the signage, which is a little obsessive and takes 3 hours to get through an exhibit. This is probably inappropriate for me to say this, but one time in college my friends and I ate mushrooms and then went to a museum and it literally felt like we were there for 3 days, because we were doubly focused. I think I had spiritual awakenings and it was fun. Oh dear.

The other thing I should mention is that along with spectrum issues; I personally go to a holistic doctor, who treats a lot of people with spectrum issues and his prospective is that it’s a quality of life issue. That you can take good care of your body and you can function at the best you can without taking a lot of medication. However, there people who opt for medication to deal with anxiety and a whole host of issues. And because of that many times spectrum people need to be free at one o’clock to take their medication or need a place to go to dig into their bag to find what they need. And sometimes what they need isn’t available in the café. I have a lot of dietary food issues and it helps if the people in the café understand that. I’ve had people say to me, “this wrap sandwich doesn’t have that much wheat in it.” What they don’t understand is that it still has wheat in it. I can’t peel it to the lettuce and eat it I’m still going to be affected. So it helps if the café is aware. I remember going to the museum as a child and it seems like there was more available spaces for people to sit down and eat food they brought with them. I know that it takes away from making money for the museum, but it also keeps people on location. And if I have five children, and I can’t afford to buy them each a bowl of soup in the café, I might have to bring them each a peanut butter and banana sandwich that I made them on special bread-rice bread or something, that the museum may not have access to. These are the things… having an available space for people or just to go to wind down between exhibits or just to sit down for a minute and process and “what did I just see?” We get overwhelmed. We do get overwhelmed. And I think normal, I don’t like to use the word normal, typical people get overwhelmed too. These are issues that may or may not be specific to our situation.

But my suggestion or hope is that there would be more daytime options and less crowded, social party times of day like early Sunday morning or Tuesday morning when we can go to the museum and it could even be designated, I mean I’m not against segregation, but at the same time it’s helpful, when you know what to expect from us. As somebody who, I don’t always . . . what is it called when you don’t edit what you say? I don’t always edit what I say, so that’s not easy for me. That could be in a personal conversation with someone, or with a stranger in line at the Post Office. There will be times that I will speak to the strangers in line at the Post Office, just because I do feel a little awkward standing so close to them. And so it’s my way of alleviating my stress of thinking, “oh my God I have to stand this close to these people?” I don’t even like being bumped, but I live in Times Square so I’ve learned to get jostled and I don’t fight back or anything.

Anyway, those are some issues. I love what Michael Carley said; I believe that feeling accepted and respected are two very important things. Many times people with spectrum are very focused and very obsessive about a topic. And I used to volunteer at the American Folk Art Museum and people would come in and many of them were spectrum people, because of the nature of what we represented there, the outsider art and the various collections. And people with spectrum issues . . . and I love a huge collection of one object. It just blows my mind. There was a quilt collection that every quilt, there were 400 quilts and they were all made of red and white material. And that just blew me away and that was a really awesome exhibit that many people talk about. The reason I’m saying that is many times we like to give our feedback. Because I was sitting at the hospitality desk, many times I was the person who fielded the questions. I also volunteer at the Outsider Fair and many times I would field people coming to me saying, “ but why am I not an ‘outsider artist’? Why is this person?” We had a script that we stuck to but at the same time, and we also had cards that had email addresses where they could send their questions. And so it’s kind of one of those things where maybe you can’t help the person or you can’t absorb whatever it is they are experiencing, but you can give them a venue where they can do it later or at a different time. An art gallery I was in recently had a computer set up in the corner and they were inviting people to sit down and log in and express how they felt about the artwork in the gallery. And it was very hands on and direct. And it alleviated the need to express “why is this here?” and “where did this come from?” Even in the American Folk Art Museum many times we had pieces that were unidentified and then people would come into the museum and say, “I know what that is.” Or “I know where that came from.” Or “I know the artist.” And it would broaden the experience for the museum and I think one of the stories ended up in The New York Times as a human-interest story. Because this art piece was a premiere piece that nobody had any background information and then all of the sudden, because somebody took the initiative to share with our staff, we had a whole showcase like a whole lot of information to expand on for that particular piece. So sometimes interacting with the people who are obsessive-compulsive about what they are in love with or what they are passionate about, could lead to other information or another way of looking at something that you are trying to present to the public. So if you have on your website a Q and A section or a place where we can log in where it would say, “We are doing this show on this topic, does anyone have any ideas?” Or maybe you have pieces in your collection that you don’t really know how to display or connect with other things in the city.

We had an exhibit with a folk artist paired with a contemporary artist Rothko, Mark Rothko, who I don’t know if you mentioned him, but he’s an artist that you really want to sit and look at his paintings for a long time. And it was a wonderful exhibit that also joined us with MoMA, who has Mark Rothko pieces in their collection. So I mean sometimes we have a different way of looking at things and if that is helpful we it would be fun to have a way to interact and express ourselves.

Michael:
Kelly, can we come back to that, is that okay?

Kelly:
That’s okay, I’m done. Sorry.

Michael:
Thank you. Thank you, that was absolutely appropriate.

A couple of things to touch on in terms to what Kelly had said. Sometimes there is a very human duality between when somebody on the spectrum wants to share a lot of their feedback, but they may not be able to. There may be some self-consciousness that’s going on as well as a desire to share and do other things, or just self-consciousness at the same point. But what I think one of the things that Kelly is emphasizing in all that is training . . . is training for the staff, is training for the museum guards. Because I think that one of the things we think about when we think of the word sensitivity training or just being sensitive is not making horrific mistakes. But if somebody actually had a 3 or 4 hour training a couple of years ago and recognizes that somebody, who is looking at one of the exhibits, is feeling really self-conscious, there are things that that person can do to either back away or something surreptitious, that better brains than mine can describe to you, to make that person feel less self-conscious. Simply by that little karmic thing that communicates that “I understand that you feel self-conscious and I want to give you some space” . . . and that is kind of what trainings can really do as well. With folks on the spectrum also too, this is a rare thing, lots of bad experiences for people on the spectrum with airport security and sometimes law enforcement. And security guards kind of wear the same uniform so a lot of times you might be able to pick up, and just be cognizant, there is nothing you can really do, you can’t tell the security guard to wear an apron, he has to wear his uniform and he’s got to be there. But if they can be cognizant of the fact that some people have had some really horrific experiences in this capacity I think that that would probably help as well. And Kelly you are absolutely right, “normal” is a cycle on a washing machine.

With that I’d like to move to Svetlana. Svetlana thank you very much for being here.

Svetlana Novozhenina:
I thank this panel as well for letting us speak. I just wanted to note first about who I am. You heard in the introduction that I enjoy working at home, and this is how I moved my life. It doesn’t sound very successful and it’s not. But this is my choice. I am run of the mill Asperger’s or autism spectrum. Later in life you just move toward this secluded life and I just aimed at any type of work for myself where I don’t have to go somewhere, because I just cannot do it anymore, just going somewhere is difficult. So for this reason maybe my experience would be interesting, because this is what maybe 80% of people with autism are. My friends here they are more accomplished; I am not, in a social way. And also I wanted to note that I consider myself belonging to a special generation of Asperger’s people. People like me had no idea that something was wrong with me, that it has a name, in my childhood and early life. The diagnosis came to be known in about 1993 and in Russia it was even later and that is where I grew up. So I represent the experience of a person who grew up with Asperger’s and without knowing what it is and just coping everything by myself. I didn’t have any special education help whatsoever. I didn’t, even have any recognition that I had social issues in my childhood whatsoever, not from my teachers nor from my parents. And on the other hand, later in life I did have the opportunity to realize what I have, and later to reflect on my life. So this is why I consider myself belonging to a special generation, that will be later no more, because afterwards all the new children will be recognized from childhood and they will already have some sort of help. Also, I did not have any medication, never. So this is my experience. So when you grow up like this, you work on yourself. So my experiences in childhood will be different from those later in life. Let me tell you about each of my stages of life.

So, I grew up in Russia, still communist times. Right, with certain museums too. We did have field trips to museums. I grew up in the eastern part of Russia, so we had a museum about the region. It was, some of it was about the famous battles of the communist struggle, some of it was about the local peoples, which are native population in that area. So I took that trip. I was about 11 years old at the time. First issue of any outing in a group for a child with Asperger’s “with who I am paired”. This is so difficult that I could not even think about learning during this time. Nobody of course recognizes it. Probably at age 10 typically you lose friendships with other children. That’s it no more. Maybe at age 7 and 8 in elementary school you still have some friends. By 9 or 10 you lose them all. If you are in a group it is a huge issue about with who to pair. And of course you try act like you don’t care, but you do. It takes like 90% of your child’s brain capacity to process during the whole trip visit. I did manage to pick up interesting detail about the exhibitions. Another note, another thing I want to reflect on, and look it’s me now reflect on me then. When we look at some sort of art I would not pick up on emotional meaning of the art. Why? Because I did not experience most of the emotions yet. I did experience them later in life, but not in childhood. So please do not assume that children on autism know what means, what it feels like whatever is shown in the art. Even the most basic things can be not understood. So on the trip by the way I gracefully told everybody that I have to go to my grandmother and disappeared. At the time children in Russia could walk alone in the street, that’s what I did it was near by. My grandmother was my safe haven whenever there was some social issue, because she was always at home. This is what I’d say about my childhood experiences.

Art. I did visit famous exhibitions, art galleries in Moscow when I was there. I have been in Moscow only one time in my life, because it is a far away city from the Far East. It is a like 8 hours by plane.

Michael:
Svetlana, do you want to tell people where I Russia you are from? Because you mention it euphemistically and I think it will help.

Svetlana:
It is Far East region, I was born in the Khabarovsk it is Far East side and it take about 8 hours by plane or 7 days by train to get to Moscow, and a lot of money. My parents took me one time, when I was 12. I did visit the art gallery, Tretyakov Gallery, did not get much. No. And then my father took me to a church, because in Moscow there were more available at the time. I grew up in atheistic society. And I did not understand nothing. I just ran away. Because it is too overwhelming it doesn’t come naturally. Any strong emotions do not come naturally to a child and are not understood.

All right, later on I did visit museums. Let me tell you about later in life, which problems remain after I work on myself. I would say that if I am in a group what remains is with who I am with is not a problem. On the other hand being invisible in a group and being cast out–that remains. I don’t know how, but I always feel like that I don’t want to be interacted with. No chance of that. This feeling remains, I cannot shake it. It is still here. Okay so. What else remains is navigation issues. For example in 2009, I took my child, my son, by the way my son is neurotypical, so he has issues with me and he teaches me, it’s visa versa, but I still have to take him. So I take him to an exhibition at the Museum of Natural History, I bought tickets to the butterfly exhibition and lizards. If you remember it was in 2009, these are special exhibitions so they are not on the regular maps of the museum. On the paper I didn’t understand where it is. If it is a square building with numbers and floors I can figure it out. But if it is fancy building with a lot of curvy corridors and big doors and another door but it’s an exit or there is another door and it’s a something service area, I always end up bumping into the service door for some reason. I should ask, right? The person with autism will delay asking to the last moment. There is some anxiety about asking I will explain a little bit why. You see this person, he is working here, he’s a guard at the museum, in order to ask, I need to catch that moment when they approach. I ask and the person hears me…it’s not like to take a trip on the moon, it’s not that difficult. On the other hand you want to avoid it, because a lot of times I ask and at the same time they turn and they speak to somebody else and I didn’t catch it for some reason and my spoken hangs in the air instead of being heard. And this is just for any person. This is why I delay asking and orientation is always an issue and it would be helpful with more arrows printed on the paper.

And now I do understand the emotional meanings of the art and I do want to learn and I love going to museums. On the other hand I want to go all by myself, so I that I have time to read everything and learn. So I don’t know how guys like me would be, if you still want to serve us adults, I don’t know how you are going to lure them to museum. You know what? Play on their strong side instead of weak; for instance good memory. A lot of us have it. So if you make some kind of contest who remembers more or who figures out something. It would be interesting. It’s not interactive it; takes your brainpower. I would be interested to do it. And I want to learn, because every autistic person they want to learn some useful things that they can later use in conversation. We are up to it. We want to learn and we want to show off and later tell “oh yes I’ve been to this museum and I saw this painting and it employed this special light”. I still remember that Joseph Turner painting. It was in one of the museums here, I saw it and it was a big painting and he is the painter of light. I still remember it, because I want to know. We all love more information. Information has to be specific. For instance right here outside this auditorium next to the Ferrara there are a few paintings, did you notice? They are not dated. I noticed it. Okay, that will be all.

Michael:
Thank you Svetlana. Svetlana, I will tell you though that I think that, not only is there social good interest, which of course we appreciate and of course we appreciate above economic interest in accommodating individuals on the autism spectrum, but I’m one of those people that really doesn’t care if economic interest is driving people, because the social good will happen from the economic interest. In the context as I’m sure that everybody knows that the prevalence numbers are now 1 in 88, and that numbers will probably rise again, if not again and again and again, you’re talking about at least at a conservative aspect, the numbers crunchers will understand that this is at least 4% of the market share, if you include all the 1.5 siblings or 1.5 grandparents so it does become important. And I don’t think there is anything wrong with that. Whatever will do the job, will do the job. I think that also Svetlana indicates another argument for staff training. Especially what she brought up about being confused sometimes with the directions, that the directions aren’t clear enough about how to get to the exit, about how to get to this next stage of the exhibit that she is looking at. Of course although it may not make economic sense, Svetlana’s desire to be in the museum just by herself and not have to worry about the crowds, I think is shared by a lot of people on the autism spectrum, including me. The thing that I’ve always struggled with at museums, really just has to do with, I’ve always sort of whether I’m imagining it or whether it is real that there is this preordained speed that the crowd or the group dynamic in a crowded museum is suppose to go from painting to painting to painting or exhibit to exhibit to exhibit, especially if it really is a crowded area. And the whole notion of trying to accommodate other people’s dance steps is just something that really turns me into the biggest street punk, in terms of my mentality. I just want to say to the person, “Just go around, go around, I‘m staying here a little bit. You can bump into me…but”. But of course that may be unrealistic for most museums. But if you do do that as per what Kelly was saying, during the daytime when there is natural light that is something that is very important.

I loved what Svetlana said, because to me Svetlana is really a double immigrant. A lot of the younger people–it is very funny, just by sheer accident we are sort of around the same age group in terms of this panel. The younger people will refer to what life is like to have an autism spectrum condition in this society as being like being another planet and it’s kind of fun and it’s new has some juice to it so it’s good stuff. I have always thought the experience of the traditional immigrant was a little bit more of clearer parallel, if you are really looking for a good euphemism to understand what it is like, because the kids that are raised, I think that Svetlana experienced a little bit of this, that their natural way of doing things was bad and the rest of the world’s ways was doing is good; and so they better learn the rest of the world’s way of doing things. It doesn’t turn out so well. Because it is really hard to have any self-esteem when you are growing up like that. But if you are taught to look at it that anthropological landscape that you’ve got in front of you, with a notion that it’s just like another language and it’s like learning French or something like that. Then you understand that if you are going to survive this culture that you’ve been dropped into, you do have to learn their language, you do have to learn certain things and it’s a drag and what have you, but that you understand also that you have your own way of being. And like any other immigrant if they are just going to be mentally sane, you have to retain some things about culture that you came from and you keep those at home sometimes or you share them with others. But you have to retain a positive sense of the self to succeed. Svetlana thank you.

Charli, you are next.

Charli Devnet:
Hi I’m Charli Devnet and I want to talk about how working at a historic house museum transformed my life and basically made me feel like a real human being for the first time since childhood. As a matter of background, you might say a lot of what Svetlana described as her experiences growing up also pertains to me, although I grew up here in New York State, and not in Russia. I had no diagnosis. The word “Asperger’s” was not known when I was a child. Actually I did have a diagnosis it was “problem child”. I was considered a gifted child with behavioral problems. And things just got worse. As an adult although I had several advanced degrees, all my life I was unemployed or underemployed. I tried several different careers, nothing really work out. I lost and found many jobs. But I never really felt that I had a work environment where I would thrive or where I could flourish. Where I was happy. So here I am in my 40s, eleven years ago right about this time of the year, I came across this little ad in the Penny Saver, which is a little weekly circular we get up in Westchester County, for tour guides for the weekend at Kykuit. And I said that sounds like fun. Now, I had no idea where Kykuit was or what it was. It said it was the Rockefeller estate and I remember Nelson Rockefeller because he was the governor when I grew up. I just thought it might be fun and it has really really made a difference in my life. For those of you who have never been to Kykuit it is about the most beautiful place on earth. It is where God would have lived if he had the money. (laughing)

Michael:
(laughing) I actually got that!

Charli:
Now I had no social mentors when I was growing up. Nobody in the 60s would have thought of that concept. Social skills were something you were supposed to learn naturally and if you didn’t have them; that was your fault. You were selfish or rude you were anti-social. So I just never developed any. As you see me here today it was not what I was like 11 years ago. I was very reclusive. I was very defensive. I spent my whole life apologizing. I knew that I was a disappointment to my parents who had expected great things of me. I felt basically that I was a loser at life. Now, I looked at my fellow guides and I saw all the things I wanted to be, but I was not. They were poised, sophisticated had a lot of social skills and knew exactly what they wanted to say… and I mimicked them. I wanted to be like them. I wanted to be a member of a troupe; a troupe being a troupe of actors. So it brought out something in me that was dormant. Also, being a guide, it was a new experience for me. I had to learn how to speak in public. My first year, I had a lot of problems. I was criticized for having a flattened effect. Speaking in a monotone, I couldn’t project my voice, and I looked down at the ground and not at the visitors, but I wanted so much to keep this job, I learned. I worked on it.

Also, another benefit from working at Kykuit, and probably from museum work generally, is that as you know that many people on the spectrum have special interests, which are narrow, but deep interests. For instance when I was a child I was very fascinated by the gods and goddesses of Greek mythology and by the time I was 10 years old I was pretty much an expert. But instead of my parents encouraging me to pursue this special interest and maybe to become professor of comparative religion or an expert anthropologist or archeologist I was told it was so much useless knowledge and I should stop talking about it. I was boring everybody silly. But suddenly I’m at garden in Kykuit and here is Apollo and Antiquity; here’s Aphrodite, rising up from the sea; the sleeping Ariadne, and I thought wow, I’m right at home. And when people come for a visit, they get the back story. They find out all about Ariadne and Theses, King Minos of Crete and the Minotaur.

Now Svetlana said she likes to go to museums alone and I have the exact opposite experience. My many asepses, I have trouble making friends, making relationships, so I’ve actually been alone most of my life. And I’ve gone places alone. I haven’t really been a loner by choice, but by circumstance. And although I did go to many museums on my own before I started working at Kykuit, I was kind of intimidated by always being alone. I felt that people would somehow look down on me and say, ”Why is she always alone? “and I felt intimidated and I never really got the benefit of the whole experience. You get to go to a museum or a sculpture park with somebody else you can discuss your experiences and find out other people’s reactions. It’s different. But when you are alone you really don’t get that benefit, at least for me, I never felt that I that I got the whole experience. As a guide when I joined Kykuit, we went on guide trips. We went to museums and to historic house museums like: Pope (sic) [Philip] Johnson’s Glass House, Storm King, the sculpture gardens at PepsiCo, the Cloisters and a lot of museums. And I found that the experiences improved much more when I went as part of a group and even now when I going alone now I have a certain legitimacy because I’m part of the museum community.

Now, also as far as my own personal experiences, I would say in exception of not liking to go to places alone, is to zoos. I found that zoos, from the time I was a child, were a place I really liked to go. I don’t know of any ‘Aspeys’ who don’t like animals. And I would think that the perfect museum for an autistic person is a little museum up in Bear Mountain called the Trailside Museum. It has a zoo and you can get up close to the animals and it has a lot of little exhibits on things that ‘Aspeys’ like; like geology, and it’s got Revolutionary War history, and it’s got views of the river. I also like the Cloisters maybe because I feel at home in the Middle Ages. But I find I like it because it’s dim and its quiet and I don’t like crowds. I have that too. Getting back to Kykuit, I might say that it has also helped me in a lot of ways. Most of what it’s done is that it’s given me a chance to shine. I know that many people think about autistic people as people that are introverted, and echoic, and don’t like to speak, but what as you see here once you get us interested in a topic, we can go on and on and on. But we can’t make small talk. Sometimes conversations leave us out. People start talking about their personal experiences and that we don’t really share. We have our own kind of experiences and we feel left out. Here I get to talk for 2 ? hours and people have to listen to me talk about a subject I’m interested in. They can’t change the subject to their mortgages, or where they went last summer, or how their kids are graduating from the Ivy League…something like that.

Michael:
Thank you Charli. Yeah, small talk, yawn and sigh. Um Charli I think though that most of the GRASP members might take issue with your calling the Trailside Museum the ultimate place for somebody on the spectrum. There is this little museum here in New York City called the New York City Transit Museum.

Charli:
Oh Okay
(laughter)

Michael:
And speaking of which also, Charli being a tour guide it’s not actually that unique. I’m sure that many of us have gone to the Museum of Natural History and heard somebody giving a dinosaur lecture like they really know what they’re talking about, and our ‘Aspey’ version of gaydar just goes bing bing bing bing. In essence it’s really nice because it means their special interests and their special talents are being respected and not put down. And that’s wonderful to be able to see.

I think that in the context of time, we can move to Q and A now, if you would like. And I think the format; Cynthia is going to tell me if I’m wrong or right. In essence she is going to bring the microphone around. And she is going to ask you if you have a question for us on the panel that she will ask you to use the microphone to ask the question. And panelists it’s really if you want to address the question. And just raise your hand and let’s try to keep the answers brief so that if multiple ones of us want to answer we can. Just raise your hand and I’ll come back to you. Questions, hands in the air and Cynthia will come to you.

Cynthia VandenBosch:
And may I ask that also that when you ask your question if you can state your name and the institution you’re coming from.

Terry McGee:
Hi, thank you very much. I’m Terry McGee, I work here at MoMA in Community and Access Programs. I have a couple of questions so I’ll ask them one at a time and try to keep them short. But I think they will be useful to a lot of us. One of the things I do here is organize programs for people with various needs and interests and disabilities and groups from community-based organizations as well. And when you guys were talking, a couple of you about creating either special hours without the crowds, or Charli, group programs so people could come, maybe multiple people with Asperger’s could come in and see work and talk about it with each other. How would you suggest that we go about advertising something like that? That’s the tricky thing. Do you put “This is only open to people on the spectrum”? Do you want to only be with people on the spectrum? How do you think a museum could go about balancing a program that could be social and open to people on the spectrum, but also be exclusive enough without the crowds? Does that make sense?

Michael:
Yes, yes. I’ll take the first crack at that. Obviously it’s difficult thing to orchestrate with your non-spectrum audience at the risk that they may feel excluded from something like that or included if you’re going to mix it. But then you’re also losing the control over exactly what the effect is of what you’re after. I think that if you sort of address it to “people on the autism spectrum and their friends and families”. So you are automatically going to be guaranteed that there will of course be some sensitivity right there. I think that is the way to go. Depending upon what the admission charge is, you can usually make arrangements with a lot of the parents’ organizations. I am always willing to talk to you at GRASP. You can basically get word out through the large memberships that our organizations usually have, especially here in New York City which while a sensory invasion for many people on the spectrum is culturally and intellectually heaven, a heavenly place especially since you can be weird here and it’s okay.

Charli:
I think advertising is a problem, because adults on the spectrum really aren’t organized very well. There are some web sites and GRASP is one of them and where you could reach people. On the other hand you could use key words like “in depth examination of dinosaurs” something that might appeal to someone on the spectrum like “an all animal day” or something.

Michael:
Kelly did you want to pop in?

Kelly:
Well, I go to public swimming pools and a lot of times they’ll have a designated kids swim or a designated adult swim and it’s pretty regular and you know when it’s going to happen. So like if you had something that is a regular thing, like the American Folk Art Museum, I’m not as familiar with it as I should be, but they had, I think because of Lara Parsons, has an organization for children with special needs, they had special programs especially for children with autism and on the spectrum and they were at a specific time every week. So you might not make it this week but you could make it next week. And the curators were so kind and so together that they would put together a specific tour or curriculum that would be presented during that time every week. And so it wasn’t something where you had to be here at this particular moment, but it was something that was on a regular basis, so that for someone like myself could keep in the back of their mind and can say, “oh I want to do that.” I can work it into my life. I am just throwing that out there. Tours, I’ve been on many tours at MoMA , and many museums in the city that were meeting at a particular time, because a discussion was going to be focused on a particular subject. But you asked about advertising, specifically, and I think if you had something on a regular basis, like Charli said, “not everybody is so organized”. Even Time Out, I read things in Time Out and I say, “oh I’m going to do that” and you know something else gets in the way. But if it is something that is offered on a regular basis, at a particular time, like first Saturdays, then I have it in the back of my head and I say, “oh I’m going to do that one of these days or whatever.”

Terry McGee:
Would it be appealing to you to come to a program that was advertised as just being for people on the spectrum and their friends or families?

Michael:
Even if it wasn’t necessarily for these parents, we are talking about a very large population of people and their families here in New York City, and the amount or the number of those who would be interested enough, would more than justify the existence of such an event. That’s my guess.

Terry McGee:
Thank you. That’s what I was trying to get at, if you would be interested in being in a program with a group of other individuals only who were also on the spectrum.

Svetlana:
Definitely rings a bell like Christian Mingles for Christians.

Kelly:
We have meet-ups I mean like I have met people at GRASP meetings who have invited me to go to their websites for their meet-ups. And you could advertise through a meet-up website, like the Friday night crowd wants to meet up with their people.

Michael:
The only thing Kelly with that is though is that the meet-ups don’t circulate so well. She is looking for something more widescale.

Terry McGee:
All of this is helpful for all of us.

Michael:
Okay, great.

Svetlana:
We are all on email mail list–it is much wider. At some point we are all on that list, each of us.

Terry McGee:
Svetlana, you said you’d prefer coming to museums alone, but does the kind of program we’re talking about appeal to you? Would you want to come to a program like this?

Svetlana:
I cut short my sentence, to be specific either alone or with people like me.

Michael:
Next question.

Maddy Ettenheim:
Hi, I’m Maddy Ettenheim and I work at the Museum at Eldridge Street, which is a nationally landmarked historic synagogue downtown. My question is about guided tours. We don’t really have exhibits the museum is the space itself and people come to be in the space and to learn about the historical significance. So there aren’t really placards, we have a self-guided tour that we can give out. But I’m wondering if the people on the autism spectrum would feel comfortable joining a public guided tour or only if it’s really only the self-guided tour.

Michael:
I think everybody should answer that question. Charli, do you want to start with you.

Charli:
I’m really not sure; this is something I would not have done before I went to work at Kykuit. As I said always being alone I became intimidated. I felt that it was easier for me to wander into a zoo or wander in a sculpture park. Then actually make a formal commitment to go to a guided tour. I noticed that as a tour guide not that many single people come. People come in groups. If it were advertised as a tour for people on the autism spectrum, or even as a tour for single people, or a special tour I don’t see any reason why they wouldn’t come.

Michael:
Svetlana

Svetlana:
Maybe it shouldn’t be just out in the air advertisement and then you sit and wait if anybody to show up. Maybe it should be with some sort of R.S.V.P. so you know who agreed to come on that day, and you prepare and you actually ask them what they want. For example Mitab does that, Mitab.org

Michael:

Kelly

Kelly:
Again, I’m off on Thursdays and Sundays so if you could organize…that’s terrible, but I do specifically, my friends and I who are also off on those days, we specifically look for things and we try to attach them to other things we could do in that neighborhood and so if it were at a regular time, if you had a regular spot for us. I am very good with boundaries. Like if that’s my boundary that I have to be there at 1:00 in order to make that day’s Asperger tour, I would do that. Yeah, it would be on my list. Kind of like the Tenement Museum. I go to the Tenement Museum you all meet in the room and everybody kinda gets to know each other, because it is very intimate. Something about museums it is a public space yet it is also very intimate. And sometimes at the Tenement Museum we were sharing things that were very personal and they encourage that. And I imagine that in a synagogue you’d get some very personal stories with people coming and sharing. So you’d want people that were comfortable being together. But yah if you had something on a regular basis, I’d put it on my agenda, gotta be there. Just don’t coordinate it with somebody else’s. Or be aware, if you were all consciously connected with each other and you could coordinate together. And it could be a little Saturday or Thursday, an event, oh we’re going here at 3:00 and then at 2 or 5:00 whatever the times are, we can do this at this other place. And you could coordinate together that would be fun way for you to get to know another too, and sharing notes, sharing your experiences.

Laura Parsons is I think a really awesome person, she is on the Board of Trustees at the American Folk Museum she has initiated a lot of really cool things that we do for children. And I can’t speak to represent the American Folk Art Museum. because I’m a volunteer. And I’m also very gullible and believe things people tell me as historic facts like oh yeah that guy cooked his roommate and served her to the homeless as soup and turned out no, that that was only folklore. And Cindy I think you said you organize tours and there is an actual tour of the East Village where someone was beheaded here. Oh how exciting. Anyway I think that networking is a great way.

Michael:
My response, I’m going to be the downer of the group actually, in answer to your question. And I’m speaking in terms of the predominant response, not everybody. I think the whole notion of again having to move at the same pace. If something in our little brains just says, “wow that is really cool and I really want to focus on it” tour guide and rest of the tour, if that person has to hurry up that experience you’re gonna get stress, anxiety, and overload very quickly. Just as much as you’ll get “why do we have to stop at this part, this part is so boring”. And I think this presents difficulties.

You know I think this brings up the elephant in the bathtub situation we have right here. We’re here talking about the Autism Spectrum, which ranges from Albert Einstein, Emily Dickenson, Thomas Jefferson, Beethoven, Mozart all these famous people being diagnosed in retrospect with spectrum conditions and the extreme other end we’re talking about some folks who may never say a word, have to wear a head restraining device, and may never have an intimate relationship nor hold down a job for that long. And that sometimes offends certain people’s whatever inside, we’re human beings and we like to compartmentalize. And we can’t with the autism spectrum and that really bugs a lot of people here. I think that one of those things, this panel, the four of us, we are in one chunk of that spectrum and it is good for you to think outside of that chunk. For folks that have more challenges, oddly enough, I still think you have to deal with training issues, especially in regards to stemming behaviors where somebody is making noises or flapping their arms or what have you. I promise you the security guard that has been trained that stems are often an expression of pleasure, not “I’m really anxious and I’m going to kill somebody.” If they are taught that that may be a sign that they are really happy and is just jonesing on the painting they just went past. That could absolutely change the museum experience for that individual as well. They are also more recognizable as saying, “oh that person is autistic”. Whereas this particular chunk, you are asking for training on top of guesswork. If you’re a security guard and someone is acting a little differently than perhaps somebody else in this particular museum So I say this just to have something to throw out there because it is fairly obvious that this is one chunk in the autism spectrum that is really really big.

Next question.

Bridgette:
Hi I’m Bridgett, I work with New York Public Library.

Svetlana, you talked about the feeling of being invisible in a group and I wasn’t sure whether you thought of it as, it sounded pretty negative. Do you feel that you would have liked to have been approached by someone or would that be threatening? And also if anybody would like to comment on the Library, I don’t want to change the conversation too much, because we are in the minority, but if you have book discussions, film discussions, you had positive experiences with, that might be more appropriate in the library setting.

Svetlana:
Being invisible means that they never look at me and I don’t stand any chance of being interacted with. And the reason for it is probably because I don’t look at them. For example when I listen to somebody, my best way is to turn, to turn my best ear, which is this one, and look somewhere like at the item. And maybe even today, when I was talking, actually I watch myself, I don’t think I looked at you enough to make a real good speech. When I’m in a group I don’t look, I turn with the ear. I might appear that I’m not interested, but actually I’m listening. What I do in my mind I create this image of the person who is standing and talking. And it is very much present in my mind as an object, as a placeholder for someone with whom I talk. So I do want to participate in the conversation sometimes. And then again this issue of when to say something. I always miss it. So that’s why. And children probably feel the same way.

Michael:
Anybody else want to comment on libraries before I jump in?

Charli:
I want to take issue with something you said. I am not all Albert Einstein. I had a lot of issues
Including stemming behaviors and there were times in my life where I was pretty dysfunctional.

To me libraries are safe havens I spent a lot of my life in libraries. I actually got my education in libraries. I never really thought of school as being a place where you got your education. School was a place you had to go, you were sort of warehoused there because you weren’t old enough or fit enough to live the world. Actually libraries, in fact there’s a sign outside this library someone dedicated a bench that says, “This is the university of the masses.” I think that many Aspeys think that libraries are sort of safe havens for them.

Michael:
I would agree with that. I think that in a library; if you’re going to stare at a painting that is just rocking your world, everybody is going to know that. And if you’re going to be lingering at that particular place all that time, you are, depending upon how much social awareness you have, I would say that there may be some self-consciousness, because you are making it very plain that this painting either fascinates you, or that you are really really driven into it. Maybe there is somebody thinks that you’re, or because you had so much criticism all of your life for things that you had no control over…there’s minor league versions of post traumatic stress disorder that sometimes accompany people on the spectrum into their adulthood. And you see that a lot in the folks that feel as though they have to apologize a lot for everything very very quickly, because they don’t want to explain their side of things. They just want the confrontation to be over as quickly as possible. And in libraries you can really focus on your special interests and really nobody knows. And I think that self-consciousness is quite lifted from libraries.

One note too, I think a large part of our population in all facets of the spectrum is very much more in tune with, if you latch onto one artist, musician, genre or something like that, our folks tend to want to find out everything that is humanly possible about that particular artist, musician or genre. If somebody reads A Hundred Years of Solitude, on the spectrum, they usually are not going to want to go to the next great book that somebody recommends to them. They are going to want to read everything Gabriel García Márquez ever wrote in his life. And go to Lincoln Center and dig up in the archives, his third grade history papers that he wrote and even learn Spanish to figure out what he is saying in them. You see this a lot in pop songs with more challenged folks on the spectrum. They will listen to them over and over and over again. And I experienced that growing up. I know what the impulse was, the impulse was, “holy cow something really moved me. I gotta know how that happened and how that worked.” And libraries I think accommodated that.

I’ll tell you another thing about libraries. GRASP has about 27 support group networks scattered around North America, and we usually like to have our members choose the subjects. Svetlana and I were talking about this earlier. And the two subjects that everybody is going to choose during the monthly meeting at one point during the year is going to be employment and dating. A lot of the things you are going to hear about the anxieties for certain folks surrounding dating has to do with the stereotypical date we go on and follow the script is dinner and the movie (I never understood the movies because you don’t talk to the other person, so it’s difficult to figure that one out.) The dinners, it’s kind of like you know there is this weird lighting and crowd noise sort of stuff, and some times it’s like this terrible sensory thing. So GRASP has always historically pushed the alternative stuff, and my favorite date in the world is when two people go to a library and walk around the library and they each share with one another which books they love.

Next question?

Kathleen:
Hi, I’m Kathleen from the Yale Center for British Art and we’ve started a program for children 5-10, called “Exploring Artism”. It is for families as well, so siblilngs and parents are with them. So we have a really broad range in this program from children who are non-verbal, to children who are extremely verbal and typical children as well. One of my questions is you had said “small talk; yawn, sigh”.

Michael:
Sorry

Kathleen:
So the families come in and we have this 15 minutes of them drawing, coloring as everybody is coming together and we have lots of volunteers in the program so we are all milling around we are all asking, talking to all the children trying to make them feel really welcome and sometimes I’m wondering if we’re not torturing them especially the non-verbal child you don’t want to make them feel invisible so sometimes you have to wait until the Mother directs you, just trying to find that balance. Are they yawning and sighing as we ask them? It’s about them not about our mortgage or things that you talk about before… I just want to trying to get a read, because you were so great about sharing your childhood experiences.

Michael:

I will jump in again but you guys first.

Charli:
I think you have to wait for them to lead you really. They will be interested in something. You really have to find out what their interests are. They will talk to you or if they are non-verbal they will pick up an object or show you in some way. So wait for them to take the lead.

Svetlana:
I know exactly what you are talking about the small talk, that people usually do to relax each other, makes me so much tense and anxious it is unbelievable. I just don’t want to do the small talk. If you are talking and you know you are trying to relax somebody that is the thing that will tense the Asperger’s person. That is how can check it in your mind. If you are talking about you actually want to say something information, it will not be so much overloaded. So this is your criteria. If you talk and you really want to say what you say- a fact, then it is not causing tension. If you talk, but actually you are trying to relax somebody by just, “la la la la”, that will cause tension, both in children and in adults.

Michael:
I agree. It is a case-by-case scenario and unfortunately it is one of those risky situations where you are going to have to brave the elements and either going to be wrong or right in terms of your actions. I would say though that a lot of times for more challenged kids it depends oddly enough not on their personality, but what behavioral strategy that was used on them in schools. The very very popular one for more challenged kids is Applied Behavioral Analysis otherwise known as ABA . And ABA does absolute wonders with a lot those kids I think though that, I work with kids that were raised on ABA in the New York City public schools, I have a contract with them. There is a problem and a shift where they need to switch to something else. ABA works very well in teaching you what is expected of you, how to respond, and how to behave appropriately. But you asked a kid that has been raised on nothing but ABA, “What do you want?” They don’t even have an, it’s not that they don’t have an answer; it is that they don’t understand the concept that they might what something different from what other people want from them, doesn’t even exist. Those are the kids, I find are fantastic with small talk. And again, I don’t mean to disparage ABA whatsoever, but sometimes I think, “Why are spending so much time on teaching them small talk? It’s not necessary, they may not want to do it.” But they also want to get along. They’ve had enough bad experiences too, so that drives people to want to engage in small talk just to assimilate and to stop the confrontations.

Another questions? Got a hand raised over here.

Andrew:
Hi my name is Andrew I work in the New York Botanical Gardens, I’m actually going to run with that theme that we were discussing before. We have a teenage internship program where we have kids from like the Summit School they’ll come up and they’ll work within children’s education. So I think by them just coming into the internship program it’s a bit self- selecting whether they want to engage or work in public speaking. But as someone that has to train and mentor them it has been very helpful to hear you talk about your experiences as a teenager and I think I often find myself in the position where I am trying to relate or have small talk. So just if you have any tips you guys have with your personal experience, and it’s very helpful to hear about the some of the training they have in high school that’s often not known to educators in the museum community, what the education is and how their teachers talk to them.

Any tips would be helpful.

Michael:
I think just right off the bat, that it may be a nightmare for some parents that if you have a kid exploding and not talking about the subject that fascinates him, yes there is a need for some social misdirection there. The fact that this person feels comfortable enough and empowered enough to share this fascination with this particular subject that he or she may be very very proud of the fact that they accumulated so much knowledge of this. This is something that should be encouraged. There is a great comic-tragic catch-22 that I’ve always found, this is a population of folks who hear the word “anti-social” a lot, but usually when someone gets called “anti-social” by someone else, it happened during the moment in which they are trying to be exactly the opposite of anti-social. It’s not the quiet one reading the book in the corner, that’s the one who is anti-social not the one who really made a big social fauxpas and sort of stumbled out there.

Do any of you want to answer that question?

Charli:
I want to say just talk to them as if they are grown up and talk to them seriously about the subject matter at hand. As I said I just have a hard time talking the small talk, you know I’d rather stick to serious subjects. We are all not alike. Some may actually prefer small talk. This is just my experience.

Svetlana:
I want to explain why exactly it is tense. When someone does the small talk to me I have to respond in the same manner as if I’m relaxing but I’m not. I have to use a tremendous amount of brain power to watch myself as to what I do, how I speak in order to resemble as if I continue this small talk which I’m not. So I’m ready to explode after talking about the weather.

Michael:
And don’t be offended if someone says something blunt. Again what we learn as we grow up are these social filters as to how not to offend other people by being brutally honest, because there is just something inside us that says whey lie? And there are reasons to lie every once in a while.

Carrie:
Hi again I’m Carrie from MoMA. I want to make the distinction, because we do a similar program here at MoMA to what this woman was talking about with young children and also what you were talking about. It sounds like everyone is not interested in small talk but you’re talking about things like the weather, people’s mortgages, it doesn’t mean that kids or adults on the spectrum aren’t interested in having genuine conversations about their interests or what they did over the weekend, their days. You said something earlier that is part of the philosophy I use with training educators, you said, “playing to the stereo type shuts down possibility” and so I think when I train our museum educators we try to have them incredibly knowledgeable about any particular audience so for example people with autism spectrum disorders but then to try to put that in their back pocket so that they are supportive yet also still challenging in a way to make it genuine and interesting to the audience. So I always say, “don’t play to the stereo type, to the disability, while keeping all of these things in mind.” Because what I wouldn’t want to see come out of this after the way we’re talking about small talk is that everyone goes back to their museums and thinks that no one with autism wants to socialize. People with autism don’t want to connect.

Michael:

I’m glad you spoke up because I think you are absolutely right.

Charli:
I would like to say something. I think I’ll give you an example: you are talking to a bunch of kids and you ask them “What did you do this weekend” and they say, “Oh I went with my friends to a birthday party or a sleepover, and we did this and that.” A lot of times a person on the autistic spectrum spent the weekend in the library or something with a special interest on the internet. And you are putting a person on the defensive to say that ‘I did something interesting too.’ And in a way to me you are reminding me that I’m different from other people instead of going to sleepovers or super bowl parties I was at the library.

Carrie:
These programs are specifically for kids on the spectrum and their families, and a gifted educator will say, ”What were you researching? Tell me about it.” Instead encourage the kid to be able share his or her special area of interest and show genuine interest and excitement in it. I find I try to engage kids with autism like I do typical kids but being aware that they may have, I find, more interesting than a sleepover or super bowl party, that I have a 6 year old that can tell me everything about gods and goddesses, to try to go there.

Michael:
Yeah I think it’s mostly of a kid oriented thing Charli that they have been trained not to go into that that very legitimate land mine territory you described.

Mystery Person:
I just want to thank you for saying what you said, because at this program they come back they are repeat visitors which is really wonderful so you do get to learn a child’s special interest. So, I wanted to understand the balance of what Svetlana said about what makes a person tense is really important to keep in mind and your comment if it’s genuine and getting to know the individual is really important.

Michael:
I think we’re out of time for questions. We could do one more quick one…if somebody’s got a quick one.

Michelle Lopez:
Hi, my name is Michelle Lopez and I work at the Queens Museum of Art. Actually my question is really about there is a lot of conversation about small talk again. Actually most of us don’t like small talk and I absolutely hate it and I’m extremely socially awkward myself and I’m not on the autism spectrum and I have a lot of difficulty with small talk as well. I think one of my questions is, when I’m speaking to instructors that are getting a lot of students in inclusion settings is about the behavior of the instructor. What I want to know is what is your pet peeve that an instructor or someone in a gallery might do with the expectation that they are going to be an educator or instructor for you. What would be some inappropriate instructor behavior?

Kelly:
Can I say something? Now don’t take this wrong, I’m not putting myself down, but like a lot of people I’m not the smartest person. I probably have two IQs one of them is very high and the other one is very low and they don’t meet anywhere in the middle. And what happens is, I have a high-pitched voice and I’m a kind of silly, I’m not always taken seriously. And sometimes what I’ve found in some situations in museums that there are textperts and experts. And the textperts tend to think very highly about what they are presenting to you. Which is very kind and nice and whatever, not referring to you Charli. Sometimes they can be dismissive.

And this is probably another inappropriate thing I’m not sure. I was in the Discovery Center recently here in Times Square and it used to be the Times Square Building and I’ll make this short. But the building is haunted and so everytime I go into the building for any particular reason I always say, “do you have any ghost stories? Has anything weird happened?” It is completely unrelated to the topic as to why we are there. But I have gotten some really good stories from the people that work there. So some people might seem like someone you want to dismiss because there is nothing going on there, like me people might think that. But the reality is that I’m there because I’m interested in the subject. I may ask you if you have ghost stories, and it may have nothing to do with anything, but I’m still interested in why I’m there. So if you could just explain that you know sometimes they may say something that is totally unrelated or stupid. I love ghost stories I love crazy stuff like that. But I don’t like being dismissed. I don’t like being treated like your opinion doesn’t matter. Or you have a different view of Henry Darger so you’re wrong. Our experts know why he did what he did. And it’s not true. If Henry Darger isn’t there to tell you why something, it’s speculation. And many times history is speculation. We don’t always know, like a thousand years from now they won’t know what these are for or whatever.

Michael:
Kelly forgive me we need to give time to everyone to respond. Charli do you want to chime in. What is a red flag for you for somebody who is a tour guide?

Charli:
Well, I can tell you what I like about a tour guide or an instructor. Somebody who sort of engages you, “What do you think that the artist is trying to say here? What do you think this is made out of? “I don’t like people being dismissive or know-it-alls.

Michael:
Svetlana what’s red flags for you for tour guides?

Svetlana:
The fun way of making people laugh in a fun way and eliciting that response from a child. Ha ha ha so they have to respond and participate in the small talk that is suppose to create a laughable and joyful atmosphere, please. It’s okay if the guide says some sort of joke only if they don’t ask us to play along. It’s too much, too difficult. Maybe one two things but no more. We cannot get jokes we cannot respond to jokes it is difficult in correct speech. We think of the joke later, one or two hours later.

Michael Carey:
I think that brings up one good point. Guides will always be better off with people on the spectrum by being specific and avoiding euphemisms, soliloquize, figures of speech. I can tell you that when I was a kid and heard, “let’s toast the bride and groom” I had nightmares for two weeks.

My answer to your question is that if a tour guide shows that or whatever vibe you get that they are not comfortable with you, that is the biggest red flag you can possibly ask for.

Cynthia I hand it over to you.

Cynthia:
Lets give our speakers a big round of applause for coming here this evening. This has been such an insightful experience for all of us in the room. I think I can speak on behalf of everyone here. This has been a great learning opportunity. We all realize ourselves when we get up and do public speaking that it causes a lot of anxiety. We appreciate that you put in the time and the thought and the care and the courage to come here today and share deeply personal experiences. We realize this is a big thing and it meant a lot to us and to the work we do in cultural institutions and disability organizations that we work with. We are very grateful to each and every one of you for coming here today.

I’d also like to extend a special thanks for some of the people who were behind the scenes today and made this possible.

Barbara Johnson, thank you so much; and Miranda Applebaum for coming in early for setting up, and for checking people in. And Danielle as well for coming in early and for taking photographs for this session. So thank you Danielle. And of course none of this would have been possible if we didn’t have a venue to host this session, so thank you Francesca for offering up the MoMA and to the tech crew and Lucas for recording session so we can share it on our website through a transcript and you can share it back at your home institutions for training purposes. So we really appreciate that. And finally I see that we have Shirley Taylor, wave your hand. Shirley Taylor is from the Far Fund and as we mentioned at the beginning of the presentation. Not only does the Far Fund provide funding for the Museum Access Consortium and also for the seed funding for you Michael Carley.

End transcript