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“A Chance to Shine”: Learning from Adults on the Autism Spectrum

on Thu, 09/05/2013 - 2:38pm

This post was written by Sarah Crean

Earlier this year, the Museum Access Consortium co-hosted a special workshop at the Museum of Modern Art with 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 supports, education, and advocacy.

Because we are beginning to plan a fall workshop on entering the world of work, we thought this was a great moment to share some of the insights offered during the workshop. The speakers have all been diagnosed with autism, love museums, and were eager to share and engage in a conversation about their experiences and perspectives on visiting, volunteering at, and even working at cultural institutions.

We were very fortunate to hear from Kelly Brandt, who has been a volunteer and member at the American Folk Art Museum for over 10 years. She is also a trained artist; Charli Devnet, who is employed as a tour guide at Kykuit, an estate that was home to four generations of the Rockefeller family in Sleepy Hollow, New York; and Svetlana Novozhenina, who enjoys going to museums, is mother to a seven-year old, and is also an immigrant from Russia, having lived in the U.S. since 1997.  

The workshop was chaired by Michael John Carley, GRASP’s Executive Director.

One very striking theme of the workshop was how much difference a job could make, especially if it capitalized on the love of learning shared by many on the spectrum. Charli Devnet noted that, “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 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…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.... 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.”  

But museums and other cultural institutions can be stressful for those on the spectrum due to issues like crowding and artificial lighting, the panelists explained. They said that those on the spectrum can experience museum visits in different, and possibly more unpleasant, ways. Appropriate training of staff could go far in helping those on the spectrum have a much more positive experience.

Kelly Brandt recalled that, “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. She said that museum staffers are “more aware and conscious that there are people on the spectrum interacting...”

Kelly added that giving all visitors, especially those on the spectrum, ways to take a break and get some physical and mental space, was invaluable.  “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.”

Panelists pointed out that something as simple as providing improved directional signage can greatly enhance a visit. Asking a busy museum guard for directions can be stressful for those on the spectrum. “The person with autism will delay asking to the last moment. There is some anxiety about asking…” said Svetlana Novozhenina.

Svetlana added that museums and other cultural institutions should also bear in mind that not every visitor receives and absorbs museum content in the same way. For instance, visitors on the spectrum may not pick up on emotional cues, as a “typical” observer might, when observing art.

She explained, “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 with autism know what means, what it feels like whatever is shown in the art. Even the most basic things can be not understood.”

All three panelists urged museum professionals to capitalize on the fact that many of those on the spectrum are incredibly enthusiastic and focused learners.

Svetlana suggested, “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…”

Svetlana explained her love of museums: “and I want to learn, because every autistic person they want to learn some useful things that they can later use in conversation…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.”

Kelly agreed, saying that people on the spectrum can be a tremendous resource to cultural institutions.

“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?”

The key, according to the panelists, is to acknowledge that individuals on the spectrum have as much to offer as any other museum employee or visitor. As Kelly observed, “I love what Michael Carley said; I believe that feeling accepted and respected are two very important things…”

To hear or read the entirety of the panelists’ comments, click here to listen to the recording or read the transcript.

Last but not least, we'd like to congratulate Charli Devnet whose memoir, The Snow Queen's Daughter: My Life with Aspergers, a Tale from the Lost Generationwas just published on September 1st, 2013.  We've ordered a copy and look forward to learning more about her experience and considering how the museum field can provide opportunities for self-expression, as Kykuit has done for Charli.