23 Feb Audio Clips: Adults on the Spectrum Share Their Museum Experiences
Recorded on 1-29-2013 at a Museum Access Consortium Workshop
These audio clips are recorded excerpts from a workshop that was co-hosted by the Museum Access Consortium and GRASP on January 29, 2013 at The Museum of Modern Art entitled, “Adults on the Autism Spectrum Share their Museum Experiences.” GRASP is the largest organization in the world composed of adults who have autism and their work is dedicated to improving the lives of adults and teens on the autism spectrum through community outreach, peer supports, education, and advocacy. At the workshop, the moderator and panelists from GRASP shared their insights and advice with cultural professionals regarding how museums can provide more welcoming experiences for people who have autism spectrum disorder. To view a lesson plan that incorporates these audio clips for staff training workshops, please click here. To listen to the entire recording of the workshop, you are welcome to view a full transcript of the workshop and access an audio recording of the entire session.
Like Being an Immigrant
Michael John Carley
Transcript: I have always thought the experience of the traditional immigrant was a little bit more of clearer parallel, though, if you really were 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 of doing things was 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’re sort of taught to look at it that anthropological landscape that you’ve got in front of you, with the notion that it’s just like another language, that 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 that like any other immigrant if they are just going to be mentally sane, you have to retain some things about culture in which 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 if you can succeed. Svetlana, thank you.
Range of ASD and Training
Michael John Carley
Transcript: 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. But I think that one of the things, you know, and this panel here – the four of us, we’re sort in one chunk of that spectrum here, and it really is good for all of you to think outside just our chunk. But for folks that have more challenges, oddly enough, you’re still, I think, dealing with just a training issue, especially with regard to things like stimming behaviors, where somebody might be making noises or flapping their arms or what have you. I promise you, the security guard that’s been trained that stims are often an expression of pleasure, not, you know, “I’m really anxious and I’m going to kill somebody.” If they’re taught that that actually might be the sign that somebody’s really happy and is just jonesing on the painting they just went past, that can absolutely change the museum experience for that individual as well. But they’re also more recognizable as saying, “Oh, that person is autistic.” Whereas this particular chunk, you’re asking for training on top of some guess work, perhaps. If you’re a security guard and somebody is acting differently than somebody else in a particular museum. So, I say that just as something to throw out there because it’s fairly obvious that this is just one chunk and the autism spectrum is really, really big.
Guided Tours and Pacing
Michael John Carley
Transcript: My response, actually, I’m going to be the downer of the group actually, in answer to your question. And I’m speaking in terms of what I would think would be the predominant response, not everybody. But I think the whole notion of again having to move at the same pace when… if something in our little brains just says, “wow there’s something really cool and I really want to focus on it” ah, the tour guide and the 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 that presents some difficulties there.
Transcript: 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.
Michael John Carley
Transcript: I think that brings up one good point is that guides will always be better off with folks on the spectrum by being specific and avoiding euphemisms, soliloquies, 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. [audience laughter]
My answer to your question is that if a tour guide shows that or whatever vibes 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.
Crowds, Lighting, & Social Interaction
So I was thinking that you know that there is the Free Friday Nights, and that’s actually changed a lot. Like the clientele that show up for the Free Fridays used to be museum goers, people that, hardy museum, they wanted to go and see the whole exhibit. And I’ve noticed in the last few years that many of my co-workers, who are not normally museum goers, go there to get their drink on. [Laugh]… 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 it could affect people. And also the clientele like many times I am actually there to read all the little labels and 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 but 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 a little 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. And I think that with awareness, museum staffers being more aware and conscience that there are people on the spectrum interacting, looking normal, I mean I don’t like the word normal, looking typical. I think once people who get to know me after the first 20 minutes they realize that I have a different approach to things and that my brain works a little differently than most people.
Transcript: 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 people, I don’t like to use the word normal, but typical people get overwhelmed as well. These are issues that may or may not be specific to our situation…
Not Editing What I Say
Transcript: 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” or whatever. 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.
Body Language and Listening
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 now watch myself, I don’t think I looked at you enough to make it a real good speech. When I am in a group, I don’t look and I turn with the ear. I might appear as if 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’s 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 will feel the same way, many of them.
Navigating Museums and Directions
Transcript: 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 but it’s just a something service area, I always end up bumping into those service doors for some reason. I should ask, right? The person with autism, they 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 I approach and 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, maybe 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 token 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.
Social Anxiety Childhood
Transcript: 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. Ok, 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 whom will I pair?” This is so difficult that I could not even think about learning during this time. Nobody of course recognizes it. About by 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 about 9 or 10 you lose them all. So, 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, the whole group visit.
Transcript: 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 about 10, 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 archaeologist I was told it was so much useless knowledge and I should stop talking about it. I was boring everybody silly. But suddenly here I am at garden in Kykuit and here is Apollo and Antitheti; 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 Theseus, King Minos of Crete and the Minotaur.
This resource is made possible thanks to the generous support from The FAR Fund