I met Chou Chou last spring when she left a comment on this blog. She wrote, “I love your writing, and find your darling Emma startlingly like me as a child. I am a happy, successful, 58 year old autistic woman. I just wanted to say you and your husband are wonderful parents, and Emma will be fine. She will be wonderful. She is wonderful.”
I read her comment a dozen times. I felt indescribable joy and I wept. I was just beginning to read the writings of Autistic adults and had started, very tentatively, to reach out to a few of them. Then out of nowhere there was Chou Chou reaching out to me! I was so excited! I doubt she could know how much her kind words of encouragement meant to me. We’ve been in touch ever since.
Chou Chou performing with Doc Scantlin and His Imperial Orchestra
Tell me about you as a child?
Boy! Where does one start? I was a very passive baby, and did not react to people, or reach for toys. My mother said I appeared content and able enough, but it was as if she would lose me if she wasn’t careful, as if I would slip away into my own world, forever. Baths seemed to perk me up, so I was given five baths a day, and then played with after baths. My toys were put on strings, so I could look at them, since I wouldn’t play. I would cry for hours, but could also be in total bliss. I was very late talking, almost five, except a few words, and had trouble throughout my youth speaking. I was a toe walker, head banger, and would bite myself. I had a faulty immune system, and was sick constantly. Ear aches, flu, tonsillitis, all the respiratory stuff. My gut was a mess. All one has to do is read your posts on Emma, and that describes what I went through. I did not play with other children, although I would play beside them. I was hypersensitive, and needed much time alone to recharge. I loved nature, art, swimming, especially underwater, and performing. Performing was just like plugging me into an electric socket! I would come alive! My mother realized she could make me connect better by giving me a character to play, and a small script. It has served me well.
When were you diagnosed?
Age three. My mother was the business administrator of a small, prestigious rehabilitative home, named Idylease, in northern New Jersey and the doctor in charge became our family doctor. This was the mid fifties, and he very cutting edge, because of his position at the home. He diagnosed me, much to my mother’s horror and shame. At the time, autism was considered caused by cold mothering, and children were often institutionalized, to protect them from their bad mothers. My mother hid the diagnosis, and began a masterful strategy, that not only got me through school, but made me grow into a competent, happy (if a bit odd) woman. She was a brilliant, wonderful mother.
The word autism was never used. I was called slow, or special, or a late bloomer. It was not until the late 90’s that I was told of this early diagnosis, which was confirmed by my doctor.
Can you talk a bit more about your mother’s horror and shame? Did she believe her parenting caused your Autism?
She did until the day she died. We would have long talks about it, and I would explain, over and over, what a wonderful mother she was, and all the ways she helped me, and I sometimes thought she would “get it”, but she never did. She was a career woman, in an age when that was controversial enough, and had many symptoms of what I now recognize as Aspergers, although she was never diagnosed. She was a mathematical, logical, brilliant, woman, who was loving, but not often in an emotional way, nor was she social. Unfortunately, she interpreted that as her being the “cold mother” that was considered the cause of a child being autistic. This made sense to her, and I was never able to sway her completely, and have her forgive herself for this false accusation. I know she hid my diagnosis for her own sake, as much as mine. She feared the world would see how terrible she was. So, so sad. I adored her, and she did so much right!
How did the diagnosis affect you?
It did not effect me as much as those around me, once I opened up about it. Yes, it was nice to pinpoint what I was dealing with and to put a stop to years of misdiagnosis, but I already knew who I was, and, like most autist adults, had created a multitude of strategy for getting by in life. The biggest thing was that I could be honest: about why I wouldn’t come to a party, why I had trouble following a conversation, why I would stop mid sentence sometimes, or covered my ears, or twisted my fingers, or had a peculiar way of speaking. It was obvious I was under much stress, and that made people uncomfortable, and made them think I didn’t like them much, I think. Now, I simple speak up when I need to, and politely explain my challenges. Everyone relaxes, and tend to be helpful and kind. Sometimes, it makes people talk to me as if I am a child, but I can quickly nip that in the bud! I often say that what I am dealing with is neurological, not psychological. Don’t get me wrong, I’m as neurotic as anyone else, but my neurological makeup is far different from the vast majority of people. I am no better or worst than any one of the unique people roaming this planet. However, I am, it appears, of a certain somewhat predictable, if varied, ilk. I am an autist, and a happy one, and am coming to realize that there may be others rather like me, younger ones, who could benefit a bit from my becoming part of the conversation. After a lifetime of hiding my differentness, this does not come easy, but I believe there is a responsibility that is mine to accept.
I am an autistic woman. Other than that, I am perfectly normal. Aren’t we all a little strange?
What do you remember of school? Did you go to a nursery school?
No. Since nursery and kindergarten were mostly playing, which was hard for me, my mother kept me home until first grade. This was the peak years of the baby boom, and the schools were very, very crowded. I went to parochial school, along with my older sister, brother, and, eventually, my younger sister. I think it is hard for anyone to imagine how overwhelmed the schools were by the boom. There were 72 children in my first grade classroom alone, and there were three first grade classes. It was easy to get lost in the shuffle. School was a horrible, overwhelming blur, and I mostly sat quietly and obey the rules. I am very big on rules! I was always the “slowest” child, never finishing tests, had difficulty speaking, and was pinching and biting myself. During recess, I did not play with others. I would find some detail to focus on, like an ant, or the links in the fence. I had great anxiety and fear at school. Sometimes I wasn’t able to contain it, and I would cry inconsolably. I would be sent to the nurses office, and cry it out, or be sent home. Throughout school, my mother would watch for signs that I was getting overwhelmed, and keep me home, so I could be quiet and recharge. It was easy for her to make excuses, since I was sickly anyway. Usually she would write a note saying I had a gastrointestinal virus. I missed a lot of days at school, either really ill, or with these fictitious viruses.
Were you treated differently?
Yes. There were no special education classes, but there were groups within the class. I was in the slow group, and given special reading skill projects and tasks. This confused me, because I was a voracious reader at home, beyond my age level. I just couldn’t communicate it, so they thought I couldn’t read. I was protected. My big sister or brother knew they needed to have me tag along, so I didn’t get lost or hurt. It was not considered safe for me to be alone, unless I was in our home or yard. We all just accepted that. I was in my own world, and wouldn’t watch for signs of danger. I was never punished, like the other children, as it would totally destroy me, and I would harm myself. Sometimes my brother and sisters resented that. They would be punished, but my errors would be quietly explained to me. That was all that was necessary. I loved to know the rules.
Did people talk about you in front of you?
Constantly. I didn’t mind, because, it was easier to listen to the conversation than converse myself. Sometimes, of course, it was frustrating to not be able to express myself. I remember hating cooked carrots. When they were on my dinner plate, I would force myself to eat them first, so they wouldn’t “contaminate” the rest of my meal. My father thought it meant I loved them, and would pile on more. I would burst into tears, wondering why he was torturing me with carrots. Poor guy.
There were, and still are, many times I have difficulty following a conversation. Particularly “small talk”. When I listened to other children, it made no sense to me, but I never felt it was because I was less intelligent. Their bickering and constant competition sounded unintelligent to me. My interests were quiet, and beautiful, to me. Their playing was constant battle.
Do you remember any particular instances when you felt people or other children didn’t understand you?
It was a great conspiracy of mine, along with my mother, that I was intelligent, and even talented, but was considered so deficient. I felt that my world, the one I played in alone, was beautiful, and that the other children struggled in meanness and chaos. I did not feel less than them. Because I was quiet and never mean, and most of the neighborhood kids went to our Catholic school, it was decided I was somehow blessed, that I would grow up and be a saint. Perhaps my mother started that rumor. She was awfully clever at protecting me. It kept them from picking on me, as it would be unheard of to harm this holy creature. I was left alone, but guided and protected, and even included. They always tried to involve me in games, but I didn’t do well with them. They were illogical. Sometimes they would invent special roles, so I would be included. If they were playing “war”, they would put me on top of the swing set, like a princess needing rescue, and I would cry, ” Help, save me” over and over, while they wrestled and battled. I would also have some terrible hours of crying, but these I don’t remember well at all, and always forgot they even happened once I recovered. They were not discussed.
Did you have other sensory issues that you were aware of?
My sensory challenges, without a doubt, were and are, the major issue for me to contend with. I now speak, write, and socialize well, but I experience the world in a much different way, sensorily, than is in the average range. I understand this now, and have devised many way of protecting myself, but I did not understand this when I was younger. I thought everyone experienced life the way I did, but that I was some kind of weak character because I “couldn’t take it”. Sights, sound, smells, emotions, all were overwhelming. My clothes scratched, and I thought digestion, and sometimes even breathing, was a painful process for everyone. I had a headache all my life that I didn’t even know I had, until I had some pain medication as an adult that made it go away. I would bang my head, and had to bounce and rock to fall asleep. I would cry on trips home from anywhere, because being out was overwhelming. I hurt, and the stimulation of the world hurt me. Why was everyone acting just fine? I would pray, and ask for forgiveness, since I somewhat bought the story that I was holy. Wasn’t I supposed to suffer as a saint? Surely, I would die young, after much torture!
Were you able to read and write at the same age as your peers?
I loved reading, and don’t remember ever not reading, but had great trouble writing, and could not read aloud. There were a lot of monthly magazines in our house, and encyclopedias. I poured through them, and my mother got a subscription for me to a book of the month club. I liked learning a lot, and self education. In school, though, no one knew I could do this, and I lived my role of being a remedial student. The only difference was if I was given something to memorize and perform or recite. It was like a magical trick. I would come alive, so much so, that often I would be taken from class to class, to do my performance over and over, to much applause.
I come from a very intelligent family. My mother was a mathematical genius, and member of Mensa. My brother had a photographic memory, but had a head injury, and was kept back a year in school. From then on, we were in the same grade, but he was considered the smartest kid in class, and I was the slowest. In eight grade, we were given IQ tests, for placement in the high school’s track system. Test was easy, because it involved little writing, and was logical, and solving puzzles, which I was really good at. The answers were not written, if I remember right. They were just filling in the dots, or one word. I scored the highest in the whole eight grade, even higher than my brother. It was decided I was a bored, shy genius, and I was put in track one, with the brightest students, taking advanced courses in math, Latin, and biology. That was a big mistake. I couldn’t keep up at all! I was “demoted” to track three, out of seven, where the bright, average, most popular student mostly were, and was a terrible student. My brother was made class president, and all the girls wanted to date him, so they were VERY nice to me. I got pretty, so the boys started being VERY nice to me, too, although my big brother kept vigilant guard on the advances of those New Jersey boys.
Was there anything or anyone in particular that helped you when you were young?
Without a doubt, my mother. She always believed in me, and told me I could do anything I set my mind to. When I was sick or struggled, she never for a moment treated me like I was damaged goods in any way. She would treat me with astounding respect for how I tried, and told me I was “tough as a turtle”, and a “late bloomer”. When other family members got frustrated with me, she would say, “You just wait and see. One day she’s going to show everyone what she’s made of”. She taught me to learn on my own, and gave me access to anything that I had interest in, and could do in a quiet, solitary way. She made sure I was included, but allowed me to be separate, and somehow spun it to everyone that it was a positive thing. I never had to be like anyone else. She made me feel I was wonderful as I was, and only had to be the best me, and she convinced everyone else of the same. She had a talk with the toughest bullies in the neighborhood, and made them my, and my brother, when he was injured and small, special bodyguards, to make sure no one bullied us. I don’t know if she paid them, but I wouldn’t be surprised. I remember them swaggering, “Don’t worry, Mrs. Downs, nothin’ gonna happen to them. We’ll make sure of that!”
My mother found that if she dressed me pretty, and gave me small scripts, I could become a character, and connect much better. She told me, in order to get by, to just be quiet, smile, and use my little scripts. I learned to ask questions back, by repeating questions asked to me, and, even though I couldn’t always follow the answer, just respond by saying, “that’s nice”. Usually it worked, but, sometimes they said something sad, and I wouldn’t catch it, and my response would be inappropriate. That still happens sometimes, much to my embarrassment.
My older sister changed my life, in the most astounding way. I didn’t appreciate it at all at the time, but now I do. In high school, she signed me up for drama club, because I performed so well, and was always putting on shows. I was horrified! It was a group activity. I was really scare, but more scared of my big sister, so I did it. I soared, and had the lead in many shows, and I won awards. Through playing characters, I learned to speak, and how to present myself. I went on to become a professional actress and singer, and continue to perform as my livelihood to this day.
Did you ever internalize some of the messages you received from school or others and feel shame?
The internalized negativity I feel has more to do with feeling bad that I am not able to do some things most people find easy. Feeling bad that I let others down, and can’t socialize in a more normal way. I get very frustrated that society keeps adding more sensory challenges that make things LESS accessible all the time! More noise, more flashing lights, more dependence on the value of being socially savvy, and living in a constantly socially connected way. I can no longer watch the news, because there is just so much constantly being added to help keep people’s attention, in the way of sound, visuals and speed. Many places and things are now inaccessible to me, because of the heightened stimuli.
We’ve spoken of this privately, but can you talk about feelings of shame or feeling ashamed?
I go through unbearable bouts of illogical shame, although I no longer injure myself. It has nothing to do with self-esteem. I know I am capable, and that I have a great capacity for making people happy. I am a well received entertainer, with many supportive friends and fans. I’m a rather mediocre singer, I’m afraid, but a good entertainer, and can put over a song. I am loved deeply by my husband. The shame shows up most if I’m tired. I will walk onstage, and look at the audience and think, ” who are these wonderful, beautiful, people, and why am I bothering them? It makes me want to apologize for being there. I have to remind myself that they are paying good money to see me, and I need to give them my best. It is not stage fright, which I don’t have in the least. It is shame. I wake up the next morning, drained from giving my all, and am totally ashamed. It is not a feeling like I did a bad job. I can tell that the crowd was happy, and the cheering loud. It is just a horrible, illogical feeling of fright and shame, and this tough turtle pulls into her shell! I then need to hide, for surely I will die of shame, if not allowed to recover quietly. I’m fine in a few hours, and Doc is great at understanding, and can make a joke out of anything. He will squeeze me and say, ” Oh! Are you sooo ashamed? Oh no! Oh, shame on you! Oh, it is so terrible! Oh, SHAME!” We will laugh at how silly it is that I experience this, but we both know it happens, and the best choice is to roll with the punches and laugh at this crazy crossed signal I get. I think we all have our little illogical demons. This is mine. I am not sure if this is an exclusively autistic trait. I do think it should be considered when dealing with problematic self-injury. It is no small thing. There are times in my life I would do just about anything to stop the shame, or punish myself for it, without it having anything at all to do with how things are going. I have learned to make a priority of taking care of myself, and getting enough down time.
The overwhelming shame I feel has nothing to do with internalizing what others did to me. It is just one of those odd signals that come with my particular neurological makeup, like feeling punched by flashing lights, or seeing patterns and colors when I hear music. We all tend to react to being overextended. I get bowled over by shame that has nothing to do with anything but being in a weakened state. No one causes this. I also can get in euphoric states. That can be a problem because I want to kiss and hug everyone in sight! It’s not sexual, but I just ooze with love, but you can’t go around kissing and hugging everyone who says hello to you at the grocery store!
I am pretty good at recognizing and conquering my internal baggage, and separating it from what is a more neurological manifestation, and I feel this crazy intense shame is more neurological than psychological. If there is any psychological tie-in at all, it would be that at times I am humbled, and may not feel worthy, of all the applause and special treatment I get! As I have said, I am no better or worst than anyone else, and that, above all, must be the message in conquering ableism. We are equal, and not all of us view ourselves as victims. Some of us have had wonderful people helping us, throughout our lives.
From those early days of acting in school plays, did you have a sense of “what you wanted to be when you grew up?”
There were certainly times when I was growing up when I wanted a life on stage, particularly because I was good at it, and people liked when I did it. I knew I would probably always perform, in some way, but never desired to be a star. It would have destroyed me! When I was a young woman, my faraway, vulnerable, nature was compared quite often to Judy Garland and Marilyn Monroe. As flattering as that was I thought they obviously did not fare too well. What I really wanted was to be an artist, a wife, and a mother, and to someday live in a little cottage by the sea. Life has certainly taken some strange twists and turns, but I have achieved all those things.
I understand I need protection in certain areas of my life, but I also have skills and desirable traits, that can enhance, and even offer a different kind of protection, in trade. I am a good, protective wife, to a good, protective husband. That said, performing is my stock and trade, and a way of making a living that is highly enjoyable, if exhausting! I’ve walked away from it many times, but always find it in my path once again. The more spiritual part of me, for what it’s worth, had to at some point say, “Okay, I’ll do it, as long as you want me to do it.”
Because social connection can be difficult, performing is a way I can connect to a group of people in a structured, rehearsed, really fun way. I adore the spotlight! It blocks so much of the sensory challenges in a room, and allows me to feel, more than see, the audience. It is a way I can party and play with everyone, without small talk, and without that nebulous ” unwritten script”, whatever-the-heck THAT is! I always wind up falling in love with those in attendance, and I adore that! It is not about showing how wonderful I am. It is a way I can remind everyone how wonderful they are and the best part is that Doc and I get to do it together. I am grateful, beyond anyone’s imagination. My mother said I would bloom, and, since I believed it, I did somehow. I am still autistic, but one in full, frenzied, exuberant, ridiculous bloom!
Chou Chou can be seen and heard performing with her husband, Doc Scantlin and his Imperial Palms Orchestra
Emma's Hope Book 