Exploring Autism Spectrum Disorder from an older female standpoint:
By: Saadia Mai
Tags: Older, Autism, Spectrum, Female

A reflection upon “Twirling Naked in the Streets and No One Noticed (2012)”

This is my first time reading a book by an adult female who discovers her own autism symptoms: “Twirling Naked in the Streets and No One Noticed: Growing Up with Undiagnosed Autism” (2012), by Jeannie Davide-Rivera.

Upon reading Jeannie D-R’s story, I experienced some “aha” moments in her descriptions of her childhood and young adulthood. I have a habit of marking my personal books, a leftover habit from studying hardcover textbooks. I found myself marking so many passages as “aha” moments that I decided to write down my personal comparisons. She was a carefree toddler but grew into a rattled and confused young woman.

Sensory overload is a running subtext in Jeannie’s makeup. Light bothers her a lot. I am bothered by light sometimes: I am most bothered when my health, specifically my immune system, is poor. For example in 1988, when I had the episode of aplastic anemia, with my White Blood Cell (WBC) in the low 1,000- I was so tired that I could barely open my eyes, and when I opened them, I found light to be very glaring. This has recurred only a handful of times in the past 35 years, not enough for me to track. When I feel well and healthy, I am perfectly fine playing outdoors in the bright summer sun of Texas. I wear sunglasses when driving into the sun, that’s about all I do nowadays. But after thinking about this a lot, I realize that what I react to is the abrupt change. My eyeballs and my brain do not care for the transition shock of having a light turned on in the dark and at times, I have reacted violently with annoyance. I do much better with dimmers!

Loud noises. I don’t like the TV turned out loud in the background. I prefer watching the news, or a documentary, or a movie, then turning off the sound. I like my favorite songs or music and can them in a loop for hours on end. I find music very soothing and a direct path to my emotional soul.

Jeannie talks about her sensory needs, the compulsion to touch things and smell foodstuffs. As a child, she would tear off her clothing if they irritated her or vomit if food disagreed with her. I had no such issues: however, I am slightly bothered by irritating clothes tags or itchy seams or scratchy wool outfits; and I have trouble swallowing some foodstuffs. Jeannie’s tactile sensitivities/sensory issues are very challenging, almost disabling. For myself, I do like very soft things like fur or fleece or silk and satin and very smooth cotton. I am happier if I get it. I suppose I have unthinkingly chosen such items without consciously seeking them? I think clothing is much more soft and stretchy nowadays than in the days I was growing up. I recall the feeling of being in a straight jacket and being very irritated. In the 80’s I discovered rayon, a soft manmade fabric. In the 90’s, stretch came into the clothing industry: I love stretch in fabrics! I used to feel that clothes were rather stiff, even the homemade outfits my mom made to my size. I absolutely hated being stuffed into bulky layers of clothing, which made my arms stick out to the side. I make sure my winter coats are large enough to allow sweaters otherwise I just wear a down vest. I seem to remember my baby girl Roanne crying if she had anything on her feet or legs, so I learned to put her in open footed pajamas at night. Jeannie says that her compulsive habits were explained away as allergies.

Immense need for personal time. Jeannie recalls sitting alone in her own world. I had a habit in childhood and in my teens, of sitting by myself and thinking and being out there somewhere in my head. I still need immense amounts of private time. I tend to withdraw rather than engage in groups. I zone out when I am stressed and I have ignored people on purpose when I just could not be bothered to interact.

She had imaginary friends as a youngster: I never had any. I do not recall having any all-consuming obsessions when I was very young. I always had my younger sister so searching for friends was not an issue.

Verbal prodigy. She was verbal and smart, too verbal and too smart. She consumed books. This is the FIRST FACT that dinged “aha” in my brain. Hey, me too! I remember reading books in French, because from age 3 to age 8, I lived in Paris, France. I read a lot of books. My parents encouraged us to read when we outgrew the evening story reading hour. Books were always available regardless of the family budget! When we moved to Turkey and then to Saudi Arabia, I was so starved for reading material beyond school textbooks that one summer, I read my daddy’s dictionary (Le Petit Larousse) which was like an Encyclopedia. Thereafter, my daddy used to call me “Mademoiselle Je-Sais-Tout”, or Little Miss Know-It-All. Looking back at that age, I must have been a pain in the rear. Jeannie D-R describes the condition as Hyperlexic. Hyperlexia is an ability to read way above what is expected for the child’s age, and is accompanied by a below average ability to comprehend spoken language. I don’t know about that part because no one has ever commented on my ability to comprehend spoken language. This may be due to the fact that I understood my family when we spoke Chinese Mandarin at home; and I understood whichever language (French/Arabic) in the country where we lived, at an elementary school child level. I have always been a champion speller in French or English, I figured that I had nearly a photographic memory of works and pronunciation.

Innate Disposition. Jeannie was not a quiet, withdrawn child. I am not sure about my childhood. My parents remarked that I was a sunny, active and outgoing child until about age 9–10, then I became more quiet, shy and withdrawn. Jeannie says she talked mostly to adults while other children thought she was odd. I really do not recall much of my early childhood: we traveled and changed schools and countries, hence much of my childhood is a blur. The only constant is my sister Fawzia, just a year younger than myself, who was my constant companion and playmate and best friend. I think that our family’s constant moving about may have masked some of my social difficulties on one hand while on the other hand, reinforced my natural tendencies to withdraw and live my own rich inner life. My father was concerned enough about my dour disposition when I was 18–19 and that was one of his primary motives to support my request to attend school in the US even though it was a hardship on the family budget. I owe him his love and insight, this changed my life!

Single mindedness. Jeannie says her mother deemed her stubborn and wanting her own way. Aha! I seem to recall my mother asking me not to be so stubborn and set in my way. That demand always puzzled me and somewhat hurt my feelings because I did not understand why I was wrong and why my mother would sigh from frustration. Why did people think that I was spoiled? just because I was the first born and I was expecting to get my way? Frankly, I have no recollection of what I said or did that would come across as so inflexible. My parents kept saying in Chinese “……” which means “stop being so single-minded!”

Need for routines. Jeannie talks about her compulsion for fixed routines, behaviors, that made no sense to adults. She describes how she likes things placed a certain way in her environment. Well, I would say that most people become set in their ways and resent changes. I have developed my own coping style over the years. On the first day of any new job or situation, I find myself focusing and absorbing information at such a rate that I collapse at the end of the day. It takes up to a week sometimes to adapt to a new situation. Then I develop ways to convert everything into a routine, or a fixed set of steps, which takes much less energy. This organizational sequence leaves my energy available to deal with new things or last-minute emergencies. For example, when I was attending schools that required uniforms, I learned that having a preset outfit saved a lot of hassle getting dressed appropriately in the morning. Over the decades, in the working world, I studied magazines and books on working outfits and mindful of my budged, developed over time a set of matching work outfits with swappable tops and bottoms. I anticipate the weather and the occasion and put everything together the night before. I use my favorite color themes and outfit styles.

I like my personal items set up in a way that makes sense and is pleasing to me, or makes sense to my work flow, for example. 40 years ago, I would see people feeling disoriented when working in other people’s spaces, homes or kitchens. I distinctly recall helping in someone’s kitchen and one bystander commenting on how I seemed comfortable functioning. My reply was that my first step was to open all cabinet doors and drawers so I could figure out the organizational storage. After that it was just easy to work. But in the past 20 years, with the advent of portable laptops, it seems that people are used to just moving around and working wherever they land, so there is less attachment to one’s surroundings. Nowadays we all walk around with a backpack and with our portable electronics. That’s a positive thing.

As a child, Jeannie loved to arrange things, to order them in a satisfactory manner. Yes, I know the feeling. I do notice my innate tendency to re-arrange things everywhere I go, to the extent that I am able to get away with it. At a new work station, I may open a desk drawer and I may start re-arranging items if they are jumbled. Put the pencils and pens together; put the post-it notes together; etc. Line up or push tables and chairs into order. Hang up coats; line up jumbled shoes in the foyer. Stack dirty dishes plates and bowls by size; cups and glasses; eating utensils; wash items in a sequence and stack to dry in order; or load the dishwasher in a way that makes sense to me. I refrain from getting annoyed or commenting on other people’s habits because my style is mine and there is no need to confront others to make them do things my way. I have been in places, other people’s homes, where I see things and I just twitch and have to get up and put things in order. Making order out of chaos. That’s just me.

Jeanie talks about wanting to do things to perfection and the beginnings of a perfectionist. Aha moment there! Yes, I know all about wanting to do things right. Yes, I always thought that there is only one way to do things and never to give less than my best.

Trouble switching activities. Another definitive “Aha” moment comes when she talks about her early childhood when she had trouble switching activities. She said her brain needed time to make the switch. She says that even today, as an adult, when she is absorbed in an activity, she resents and even feels anger at interruptions. Yes! I remember that pervasive annoyed feeling in my growing up years and adulthood! I get very absorbed in my projects and I don’t like interruptions, and I have in the past reacted with hostility and impatience, coming off as irrational and angry. I have learned to empathize with others, so I now thank them for notifying me, and I ask for a little time to wind down my project. Actually, it is a teacher skill we use all the time in classrooms, announcing a transition and spelling out to children how much time and what is expected to put away or concluded. So I think it is just a basic human need for “transitions” as we say in teacher-talk.

Jeannie was very smart but after elementary school, she struggled because she could not find her way around and she refused to attend classes. Yet she was able to read her textbooks and ace her tests. I had no trouble navigating surroundings, I actually think I have excellent skills. Aha! I remember being an excellent student: I could read and comprehend and answer all the questions in class. That must have been very annoying to others! I usually read the textbooks from cover to cover within the first few days of school and managed to make it through the full semester without missing a step, I am not sure why I did not have behavioral issues. School was always easy for me, I was the studious child who applied herself.

Literal Interpretations. Jeannie mentions her difficulties with literal meanings. I vaguely remember taking things literally and having trouble understanding nuances. But that was so long ago. Nowadays I am perfectly able to distinguish and express complex nuances in communications. Actually I respond to youngsters inquiries which are literal and I might give feedback on what I think they are trying to express.

Stimming. Jeannie talks about “stimming”, self-stimulating behaviors or stereotypic behavior. I never did any hand flapping, rocking back and forth, or spinning, or walking on tiptoe. It is a way for autistic people to adapt to the sensory stimuli around them. They are meant to be calming actions which help regulate the overwhelming sensory input that the autistic person is experiencing. (Note: why is the word defined as self-stimulating and self-calming at the same time?) She talks about never sitting still. I can relate to that somewhat. I can stay still for hours when I am absorbed in a project, but at times, I get ants in my seat and I must get up and move around constantly. It is not an obvious thing in me.

No Filter. Jeannie talks about embarrassing behavior when she was not trying to be difficult or rude, her intention was never to make anyone feel bad. Aha moment there! How many times have I done or said something in my youth which my parents would point out, and I would say, “it is not my fault, I did not mean it!” That standard response would make my parents so upset! Apparently, she had no filter. Unfortunately, I cannot remember any single instance of such behavior, only the constant sighing of my frustrated parents. She talks about her autistic brain being stubborn, unyielding and immovable. I never saw myself that way, but I have been asked to be more flexible and willing to compromise… Yes, yes, I can be sharp, cutting, analytical, in my observations, and that comes across as uncaring to my near and dear.

“My One Friend; My Only Friend”. That chapter was a “aha” moment. Much of her chidhood was spent with built-in friends, friends who were present as a result of propinquity. My one and only friend while growing up was my sister Fawzia: she was always there, tagging along as a younger sister and playmate and even classmate at times. I do not recall much about making friends outside of home. I was presumable sociable enough but our constant moving about made it difficult to maintain or cultivate schoolyard friendships. I recall a couple of instances when I decided to make friends with a specific classmate and agonized about how to go about it. One friend I sought out was Marianne Abrams in “cinquieme” (French school), or the US 7th grade . We have now connected again on Facebook in recent years. After a while, I simply let my sister Fawzia lead the friendship forays and enjoy the vicarious fun. I realized that I was comfortable one-on-one and awkward in group settings. I was able to manage working with groups and teams during my professional career until I pursued a teaching career: I found it extremely difficult to follow the students running commentaries across the classroom and frequently fell back on my innate habit to just let the “noise” play out, which is a serious mistake for a teacher! I am learning to tune into the candid back-and-forth, both to attune my ears to the speech syntax and cadence and to track the students topics of interest and tend to them as necessary.

Jeannie recalls very few people, most characters are fuzzy and faded. In my case, I hardly recall much of anything. In comparison with my own sister, she seems to have a sharp recall of people, places and situations and can name names and addresses: I don’t understand how we, as sisters, lived through many of the same situations and I have the haziest recollection of events, if any. However, once I have a friend, I tend to be very loyal and very invested in the relationship.

To be fair, my books were my best friends, and Jeannie relates that as well. She was interested in dance and acting, which are totally outside my interests. She noticed that she was actually a klutz and that has been my own lifelong experience.

Immunity to Peer Pressure. Jeannie mentions immunity to peer pressure as a teenager. Peer pressure is a concept I had trouble grasping. Who cares? I never followed the crowd. I did try to fit in as best as possible to cope and I have become very resourceful at it. During my college years, I learned to socialize as a young adult. On a social aspect, I always answered questions honestly, literally, which took people aback. I remember, at about age 18, thinking that people should not ask me unless they wanted an honest answer. Over the years, I have learned to be more circumspect, more diplomatic; actually I ignore most of what is going on. I don’t say what is on my mind, which does not mean I am not thinking. Actually I feel matter of fact and clinical about many things, and when I speak, which makes it difficult to come across as empathetic.

Inner Life and Empathy. Most of my life, I tend to withdraw into myself. I do recall a candid comment by one of my sisters-in-law. She said when she first met me in my mid-20’s, she thought I was rather “cold”. Then over the years, she discovered that I was actually very warm and loving. Doesn’t that tell you something? Jeannie says she does feel empathy and she craves it. She searched for it all her life until she found the Asperger’s Syndrome diagnosis in her late 30’ which reframed her understanding of herself.

Jeannie points out that Asperger’s condition(now Autism Spectrum) includes three core deficits: the lack of theory of mind; executive dysfunction; weak central coherence. Autistic people often have great difficult understanding that other people’s feelings, intentions are different than their own and are described as mind-blind. Autistic people miss cues and may say things that come across as blunt and rude.

Special Interests. Special interests and preoccupations come and go over the years. Jeannie says that one must look at the intensity and focus: one may focus to the exclusion of everything and everyone else, nearly to obsessive level. For the autistic person, an obsession and passion is a soothing and calming activity; a place to decompress and regenerate. One of the diagnostic criteria for Asperger’s Syndrome was a category titled “Restrictive Repetitive and Stereotyped Patterns of Behavior, Interests and Activities” that is abnormal in either “Intensity or Focus”. Hmm. It is an obsession that is essential, positve and empowering for autistic persons. This hyper-focus skill is a gift and should be encouraged and cherished. Well, I do tend to jump into a new subject and try to understand ALL of it. Or explore a new video game for hours on end over any number of weeks, until something else takes my attention. Jeannie states it so well: “Life drains my well. Special interests fill it back up”. Absolute aha! I remember being incredibly depressed 20 years ago and telling my late husband Bob that everything about life wore me out and I just could not work up the energy to deal with it! I think at the time I got into animal rescue big time and that pulled me out of my torpor.

What is central coherence? It is the ability to focus on both details as well as wholes. People with autism appear to have a heightened focus on details rather than wholes. I am not sure about this: I love getting down into details but I usually seem to do okay looking at the whole picture. I would say that I am usually leaving things open-ended because one can start an activity without knowing how and when it might end. Apparently meandering or getting lost into details is a problem.

Executive function is the way people monitor and control their thoughts and actions which requires skills and ability to goal, plan, sequence, prioritize, organize, initiate, pace, self-monitor, and complete. An autistic person might have trouble driving behavior towards some goal, resulting in failure to complete any accomplishments. This is totally NOT ME! I am very good at goals and driving towards accomplishments. I actually worked and excelled in a professional planning career and led teams through complex projects, and was acknowledged a superb visualizer. I am very annoyed at people who do not plan ahead of time using calendar and other project management tools. I will humbly acknowledge that I do have trouble finishing some things, particularly arts and crafts projects. I have knitting and crochet projects which have been lying in wait for years, jewelry bead and macrame projects with all the supplies purchased but never completed.

Being able to hyper-focus on a task and learn very quickly made me an excellent student and worker. I have a habit of absorbing lots of data and acing my tests. Here is where I am confused? How can one focus well, yet have poor executive function? Jeannie learned new computer programs very easily and quickly. Same here. When left by myself with a project in mind, I just get to it and learn the skills on the go. After a while, I become very, very skilled!

Jeannie talks about the rising stress of managing her adult work life creating panic attacks and insomnia. Yes, I have been there! I always attributed my nagging overwhelming anxiety to the stress of raising my son Omar, who had chronic asthma as well as nighttime bedwetting. I was dealing with crisis after crisis on a daily basis; I would fall asleep yet part of me always listened to the sound of his breathing somewhere down the hallway. Many nights I have watched the hours roll by, with no relief in sight. This is a subject I need to self-examine and expand further.

Jeannie did not do well as a waitress which requires performing basic tasks while having incredible people skills. I don’t remember too many waitressing opportunities in my youth, but about 10 years ago, I tried working at a pastry and coffee shop. I failed as a barista: I had trouble remembering how to make specialized coffee orders; I fumbled pastry and sandwich making; I could not remember how to work the cash register. Oh well… Service industry is not my forte. I just don’t seem to make it all come together at the right time. I have even tried some video games duplicating such challenges, putting together food items and delivering to the customers: I get panic attacks beyond the first few levels and crash and burn. Not for me!

Proprioception: the unconscious perception of movement and spatial orientation controlled by one’s body nerves. Autistic people tend to have poor proprioception and behave clumsily and may get bruises. Aha! This is me! I was always the one not able to run, or jump or climb in school PE. I had trouble learning anything about catching any ball. Ping Pong! badminton! Tennis! Basketball! I could never catch a ball properly. Dodge ball: a fail, and a huge anxiety situation. On the other hand, when I am able to focus and do it on my own time, I can do quite well: bowling, yes! archery, yes! I think I would do well at shooting targets. Yoga, and walking, and swimming, are my top favorite physical activities: it just requires focus and discipline. I am learning TaiChi and Qigong: it is hard for me to remember the forms and how to flow from one to the other but I find it very good for me when it comes together. Dancing: I am 2 left legs when learning any dance steps, I cannot remember the steps sequence and I trip over my feet again and again. Dancing is very very hard for me, although I love the feeling of moving to music in space. After a while, I decided that I could likely do line dancing better than ballroom or folk dancing, but a couple of hours in the beginner line dance class, and I began having trouble remembering the basic steps.

Disconnection and Depression. In her own words “depression is by far the most painful ailment I have ever faced. It is the thing that slammed into me, ran me over repeatedly, and then kicked me in the head when I was down. I struggled for change, for understanding, to figure out what was “wrong” with me”.

As a young wife and mother, coping with new situations and moving about became overwhelming. She was put on anti-depressants. She felt lost and alone, disconnected and overwhelmed. Then she was diagnosed with racing heart and panic attacks so she took Xanax. Hey, this sounds familiar! This started with me in my 40’s. My doctor at the time told me she suspected I had been depressed most of my whole life. In addition, to cope with her mystifying pains, Jeannie was diagnosed with muscle relaxers and pain medications. Yes, that is how I manage my chronic muscular-skeletal pains! She took so many additional medications that she was in a state of Psychotic Mania and was then diagnosed with bi-polar disorder. She spent a year hardly ever leaving the house. That sounds familiar too! Crash and burn! Now she knows the myriad of complex symptoms are all traits of her Autism Spectrum Disorder. After she was diagnosed as ASD, her life felt acknowledged in this new paradigm and she began the journey to understand herself.

So I can see that her story is a fingerpoint sent to me by the Universe, asking me to start the next stage of my journey. So many items that check yet so many do not seem to resonate. What is next?