The Aspiengirl and Aspienwoman Project is devoted to showcasing females of all ages and from all walks of life, who live with a Spectrum condition. In these interviews, I talk to mentor heroine Aspienwomen from a variety of countries about their lives, their gifts and talents and more. Professional performer Chou Chou (pronounced Shoo Shoo) is a professional performer and producer from the United States and an Aspienwoman mentor, who advocates for females on the Spectrum.
Credit: Danny Fowler
Tania: Welcome to the Aspienwoman Project and thank-you for agreeing to be interviewed for the “Aspienwoman Mentor Interview Series”.
Chou Chou: Thank you for inviting me! It is a pleasure to be part of this conversation.
Tania: I came across you in my research on females on the Spectrum. You are a professional singer, performer and you have Autism. How long have you known you were Autistic?
Chou Chou: Officially, about ten years, but, in truth, always, but without that specific label. I was born in the fifties, when little was known about autism and cold, bad mothering was considered the cause. My mother was the business administrator and close friend of a young doctor who ran an exclusive rehabilitative rest home outside New York City. He was very cutting edge, and up on the latest research, and took a special interest in my atypical development and behavior. He made the diagnosis. I adored him and the special attention he gave me. I was sure I would grow up and marry him. At the time, it was common for autistic children to be institutionalized, in part to protect the child from the “bad” parent. This “Refrigerator Mother Theory” of bad mothering causing autism has been long proven as wrong, but, because of this belief, it was considered a priority by the doctor and my mother to keep this label hidden. This was done in an incredibly successful manner, both for my protection, and for my mother’s reputation. My mother, unfortunately, believed she caused me to be autistic, and took this belief to her grave, living with much shame.
I was called “slow”, “simple”, and sometimes, but never by my mother, “retarded”. My brilliant mother took a different, very supportive approach. She called me a “late bloomer”, and told me I could do anything. She openly considered me uniquely wonderful just as I was, and constantly said that one day I would surprise everyone with the woman I would become. She was a wonderful, successful person. I saw no reason not to believe her!
Tania: Unfortunately and sadly, in my clinical work, I still see and hear mothers being accused of the “Refrigerator Mother Theory”. Your mother was a fantastic woman. Tell me how you became a professional performer? How long have you been performing for?
Credit: Brian Coltrane
Chou Chou: I am a fourth generation performer, and both my mother and father were in show business in their early adult years, leaving for more stable careers. I was speech delayed, but had an incredible memory. Once I started talking, I could parrot what I heard, and memorize long scripts taught to me. It was difficult to speak without a script, and the usual child’s play and conversation was nearly impossible. I was very withdrawn, but, if I was dressed up and given a script, I would light up! This was my vehicle for communication and connection, and I adored that. I put on small plays, said grace at our holiday dinners, and, recited poetry, and even went door to door in our neighbourhood, with my little ukulele, asking neighbours if they wanted me to sing them a song. I performed in school plays, getting lead roles, winning awards of various kinds, and was offered scholarships, but never wanted to be a professional performer. I wanted a more private life, with a home and family. There was always a struggle, because performing was the one way I could connect well, but it took so much out of me. I stopped performing many times, always saying I would never perform again, but something would happen, and there it would be, as my best choice for income and survival. Now, I have found the perfect balance, for me, of a private life and performing for a living, both, with my adored husband, Doc Scantlin. We have performed together for the last twenty years. I am the producer, vocalist, costumer, and co-creator of our show, and Doc is the band leader, vocalist, and music director, and inspiration. Over the years, we have performed internationally at some of the most prestigious balls and gala and have a loyal fan base in our home base of Washington, DC. We do not record or tour, and are not part of the standard popular music industry. We are not big stars, nor have we ever desired for what that would entail. We are blessed with a wonderful reputation, and keep a roof over our heads. You have probably never heard of us, although it always surprises me who has. We lead a modest little retro life, in a 1920’s cottage on the Chesapeake Bay, with the quiet, peace, and loving support that makes me thrive, and able to survive the excitement and fun of the shows. I am who I wanted to turn out to be, am very, very, happy, and never, ever, take it for granted!
Chou Chou and husband Doc Scantlin
Credit: Brian Coltrane
Chou Chou: I married at a young age, and had my beautiful son, but my first husband was in a car accident, had severe brain damage for five years, and then died. I raise my son backstage a lot, and found it easy to get steady work as a free-lance talent. I have a unique, high pitched, hyper-feminine voice that people find appealing. I sometimes think I use the singing part of my brain to speak, instead of the language part, because it is the stronger of the two. I am not a particularly great singer, but I sing to an audience as if it were a gift, and so it goes over well. Everyone likes a gift, and wants to be loved! I can do that when I perform, and that alone, I feel, makes me a worthwhile professional entertainer to this day. I am a rather normal looking person, but I enjoy dressing up and creating a kind of vintage movie star illusion of beauty, which is a great skill to have in my line of work. I am rather fearless and comfortable with this, and can get rather blissfully over-the-top. It is the more status quo, appropriate, day to day dressing where I hopelessly fail. No matter how hard I may try to “blend in”, I never have, and accept that I never will. At some point, I gave up the effort, and said, “Oh well, ‘To thine own self be true'”, and never looked back. I wear what makes me feel like me, with usually comically dramatic results for a particular occasion. I find it makes for much less stress, and makes me less awkward. Since it is genuinely me, and not just wanting to make a spectacle of myself, people accept it, but I often get more attention than I am wanting when not onstage. Oh well. Small price to pay for peace of mind. As was said of Holly Golightly in “Breakfast at Tiffany’s”, “She’s a fake, but she’s a real one!”.
Credit: Brian Coltrane
Tania: Was there a mentor and/or role model that helped you be the person you are today?
Chou Chou: I am unendingly grateful to so many people in my life who that advised and inspired me, but, without a doubt, it was my mother who gave me the ability to believe in myself and know that I may do things differently, but that I was very, very able, in my own way. My wonderful husband and son, too, inspire me endlessly.
Credit: Brian Coltrane
Tania: How does Autism affect you today versus when you were younger, say in your teens?
Chou Chou: Like most people, I have gained much wisdom and understanding over the year, both of myself and life. This is the reward of long living. I had many health issues and uncomfortable traits, that I was determined to understand, so I could accept, control, or eliminate them. I will often focus on an issue, and research it in depth, in order to find a workable solution. Sometimes there is no known solution, so I come up with my own. One by one, over many, many, years, and many failures, I have found a lifestyle and self-management that works for me. I am still an autistic woman, but I am a healthy, happy, and rather successful autistic woman, in my choice of life.
Tania: What kinds of “factors” would you say helped you become “successful”, as a female with Autism?
Chou Chou: I am often told that I work very hard at being “lucky”, and that may be true. I think everyone, autistic or not, needs to look at what their strengths are, no matter what their challenges, and accept that life can be very hard and uncomfortable, but that each of us has something to give, and can learn to give it, and in that, lies happiness. The factors that have made me find a happy life of my own making are:
- Being a visual thinker. If I can see it in my mind, I can create it in real life.
- Stubborn focus. I easily become immersed in a project, down to the smallest details.
- Finding everyone charming. This is a biggie. I am awful at reading expressions, or understanding social signals, and it was a cause of much stress. At some point, I decided that, since I was so awful at this, I would just assume everyone was charming and wonderful, and treat them accordingly. This was very hard to do, especially since I was so scared of people, but now I do it automatically. I learned that most people want to be considered charming and wonderful, and will try to prove me right! Granted, I do not advise unguarded, unsafe behavior, but, if someone is acting rude, I can remain unflustered, and offer them help, or, at least my internalized sympathy, while protecting myself. I have many friends now, and build good professional relationships. I do not socialize in the typical ways, and no longer feel I must do so. I don’t go around expecting everyone to understand, but, if the situation calls for an explanation, or a person deserves more information, I will explain and self-advocate. Then, people will prove, once again, they are, indeed, charming.
Credit: Ben Powell
- My ability to see patterns. It can appear that I have premonitions, but what is really happening is that I can see patterns develop, and so can predict outcomes, based on those patterns. That said, life is full of illogical twists and turns, and it has taken me much work to learn to stay strong and keep going when the pattern gets broken. I crave order, but chaos test my strength!
- Accepting myself as different, but not more or less, than everyone else. This is makes for good relationship building. That, and the ability to laugh at myself, and never at others.
- Having a clear understanding of what is truly harmful to me, and what to do to take care of myself. I am in the extreme hyper sensory range, even for an autistic person, and must make sure I am not put in a situation that is more than I am able to handle. I do not view this as any different from a person knowing their limits in other areas. We all have unique challenges, and there is no such thing as normal.
- NOT seeing myself as a damaged or sick person, or using autism as an excuse for getting out of things I find uncomfortable. I have things I can do very well, and some not so well…just like everyone else. I try to be brutally honest with myself about what I just don’t want to do, but should, and what can genuinely push me past my capacity, and cause harm. If someone wants me to do something that will put me in a harmful situation, I will refuse. They might as well try to get me to drink poison. I will not do it. If someone wants me to push myself a little further to achieve a goal, however, I hope I will always find the ’it’ in myself to try, and know the difference!
Tania: That’s fantastic Chou Chou. We are on the cusp of a knowledge explosion via way of research that focuses on females and includes females. What kind of advice would you offer other females on the Spectrum?
Credit: Ben Powell
Chou Chou: Believe that your way of experiencing the world is as valid as anyone else’s. Life can be very hard when you experience it in a way most don’t understand, and you must find the courage to be yourself, and give the world the best of who you are. We each have an obligation and capacity to make the world a bit better daily, no matter how severely disabling we may find our state of being. Make this your goal, and you will always be happy. You do not need to sound, look, act, or live like anyone else, but, if you are true to yourself and give what is uniquely yours to give, and assume everyone else just wants to do the same, you will find a place where you are accepted and will thrive. You don’t have to be socially savvy, you don’t have to be good at conversation, and you don’t have to be pretty. You just have to see people as charming, and give them the gift of you, and that is the best gift of all!
Tania: Where can people find out more about you or see you?
Chou Chou: Here: http://www.huffingtonpost.com/ariane-zurcher/autism-adults_b_1912430.html
Facebook: Chou Chou Scantlin
Also, we are honored that acclaimed photojournalist, Lucian Perkins, is soon to be completing a documentary about us, our band and our happy little autistic enhanced retro life. Lucian has made a trailer for the documentary. He is close to completing about Doc and me, our band, our little retro life, and how it all works so well with autistic me:)
I keep saying I will start a blog. I think I will, but, oh, life is so busy, and there are songs to be sung!
I also take breaks from social media. A girl’s gotta do what a girl’s gotta do! I hope the day will come when I can contribute more, and positively, to the understanding of being an autistic woman, and perhaps make it a bit easier for younger ones, finding their way.
Credit: Anthony Neenan
Tania: What a fantastic photo by Anthony Neenan.
Chou Chou : I love the photo (above). The spotlight blocks the extreme sensory challenge of a room, and puts me in a place where I can connect and love the charming, charming people, in a way I cannot do otherwise. It is the one thing I do well that involves people. All my other best skills are best done in solitude:)
Credit: Mark. A. Simonson
Tania: Thank you Chou Chou. It has been an absolute honour interviewing you and thank-you for your time, words and being a part of the Aspienwoman Project.
Chou Chou: Thank you, Tania! Best of luck with all you do, and may YOUR dreams come true! As I say onstage, when I introduce myself, “Now, we are friends!”.
Tania Marshall. 2013. All rights reserved. Duplication in whole or part is explicitly forbidden. Thank you.