Twirling Naked in the Streets and No One Noticed: Growing Up with Autism by Jeannie Davide-Rivera, eBooks 2013 Edition; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).
4% They missed it; they missed me. I am a survivor; an autism survivor.
< My Thoughts > “They missed it; they missed me.”
Children on the Autism Spectrum often go unnoticed until their environment makes more demands on their behavior and/or performance. Sometimes they are even missed until they find themselves in a demanding workplace. Difficulties arise, causing anxiety issues and hyperactive behavior.
4% I’ve heard people say that they didn’t see many autistic children when they were growing up, but I am here to tell you that we indeed were in your midst.
When they noticed me walking on tip-toes, they made me a ballerina. When I twirled round and round, I was only dancing. When I had imaginary friends, they said that’s what little girls do. When the light bothered me, I was allergic to sunlight. When smells overwhelmed me, I had a sensitive stomach. When I only ate a few select items, I was a picky eater. When I could not stray from my rigid routine, I was hard-headed.
< My Thoughts > “…noticed me walking on tip-toes…”
Toe-walking is not one of the ‘core’ symptoms of autism. As with other unusual and/or unwanted behavior, it is a ‘red flag’ when the child still retains the behavior beyond the time when s/he should be developing other behaviors/skills. Also, if the toe-walking becomes a safety issue, then intervention may become necessary.
Retrieved from – https://www.autism.coqm/symptoms_toe_walking
Toe-walking, by Stephen M. Edelson, Ph.D. (2016).
“Toe-walking is quite common in young children 3 years and younger. However, when children “5 years and older are still walking on their toes, “…this is often associated with neurological immaturity.” “A dysfunctional vestibular system, a common problem in autism…” “The vestibular system prepares the brain with feedback between the brain and the body’s motion and position. Therapeutic intervention such as swinging on a swing, prism glasses are available, as are exercises and/or surgery for the Achilles tendon. Edelson cautions that the parents should consider whether or not the toe-walking is a safety issue when determining the cost of treatment.
4% When I couldn’t stand certain fabrics touching my body, I was being a princess. When I cried and screamed, I was spoiled. When I rocked back and forth, I was concentrating. When I sat alone, I was in my own world.
< My Thoughts > “When I couldn’t stand certain fabrics touching my body…”
Sensory problems can be so complex, often causing persons with autism to be put into long lasting ‘behavior treatment’ programs which aren’t very successful. That’s because they’re being treated for their responses to unidentified sensory issues, and not for the challenging behavior for which the program was designed.
Sensory issues are valid and very real. At home, the kind of soap used to wash the child or their clothes can make a real difference in their comfort level… how it smells and how it feels on their skin. At school, the computer screen or room lights too bright, room temperature fluctuations, uncomfortable chairs, or even the smell of whiteboard markers can create real physical pain for the student; overriding any chance of the child focusing on lessons.
Note: Find on MENU ~ My FREE ASD Book; Know Autism, Know Your Child with < My Thoughts > by Sara Luker.
UNIT 3 What Is Most Concerning?
UNIT 3 – INTRODUCTION
CHAPTER 1 Gross & Fine Motor Skills
CHAPTER 3 Cognition & Temperament /
Personality
UNIT 4 – When Is It Sensory?
UNIT 4 – CHAPTER 1 Sensory Issues
PART 1 a. Sensory Defensiveness
b. Sensory Avoidance
4% When I couldn’t keep up, I was not living up to my potential. When I didn’t think the way others did, I was just too smart for my own good. When I didn’t connect with my peers, I just didn’t care about them. When I misinterpreted situation, I was inconsiderate. When I inserted myself, I was inappropriate.
When I stayed in my pajamas for days, I was depressed. When I was overwhelmed by the world, I was agoraphobic. When I was tired and frightened, I had an anxiety disorder. When I realized something was wrong with me, I was making excuses. I was agoraphobic.
< My Thoughts > “I was agoraphobic.”
Again, ‘sensory issues’ may be the underlying cause of what behavior appears to parents as a temperamental, uncooperative, even phobic child. Especially for girls, autism symptoms are more subtle because it is said that girls ‘internalize’, where boys tend to ‘externalize’ behavioral reactions to their environment.
According to Cornacchio, D., Chou, T., et al. (2015), “Left untreated, agoraphobia is associated with decreased well-being and daily functioning” … and is correlated with other things such as depression and substance abuse.
One can see that youth suffering from agoraphobia as well as other disorders can limit function altogether. And, as if that is not enough, the authors tell us that this anxiety diagnosis has been left out of the new DSM-5, which clinicians and insurance companies rely upon to generate approved treatment and payment reimbursement. In other words, this diagnosis will not help the ‘youth’ get coverage or services. So… you must find ways to cluster disorders together.
Convince the doctor to say something like… “Patient is suffering from depression (which insurance will cover for treatment & medication), and she also presents ‘agoraphobic’ tendencies. Next, is to find the treatment & medication that will reduce both the patient’s depression and agoraphobia. Sorry, but you have to understand the system and learn to play the game, before you can get the help you need.
< My Thoughts > “…understand the system…”
This is one of the reasons why, as difficult as it is to hear the words… “Your child has autism,” the diagnosis of ‘autism’ will open the doors for a wide range of treatment and services which will otherwise come out of your pocket. I acknowledge that it seems wrong that on top of everything else, you must be aware and ‘ savvy’ of the ‘business’ aspect of treatment and services.
5% Everything was my fault!
No one recognized my autism; no one saw that I had Asperger’s syndrome. How could they? “Aspies” did not exist; not yet.
Some of my earliest memories were of my imaginary friends, but those friends were “real” people to me, friends who were a part of my very first all-consuming special interest – baseball.
By the time I was three years old, I memorized the entire Yankee line-up, including stats. Dad was proud of my fact memorizing capabilities. When my father could not throw the ball back and forth with me in the driveway, my “baseball men” were there to help with my training. I was obsessed with baseball; I was obsessed with my “baseball men.” They were my friends.
< My Thoughts > "...my earliest memories were of my imaginary friends,"
Along with imaginary friends, many children seem to respond to, communicate with, and ‘make friends’ with a favorite toy, or animated character they see on television/book.
Gleason, T.R. & Kalpido, M. (2014) believe, their studies revealed that the imaginary friends of children can serve two functions, one with the ‘friend’ acting in a ‘subordinate’ role, and other as a ‘friend’ who was an ‘equal’, even providing knowledge and information to the child (efficacy).
What they reveal to us is that any future inquires should be extended to include examining the quality and identity of the ‘friends.’ They feel this might reveal more about the function of imaginary friends.
5% … I also traveled with ten imaginary puppies, and like my baseball men, there was no leaving them home. One day our car got a flat, and my father had to pull-over to change the tire on the side of the Belt Parkway.
When he opened the door a few of my “puppies” scurried out to keep him company. After my father finished, he hopped back into the car and we were on our way.
6% … as soon as we started down the parkway, my parents heard a blood-curling scream coming out of the back seat. My father thought I got my finger caught in the door. That wasn’t it. He had left three of my “puppies” on the side of the road!
Unable to calm me down, he pulled over. I was inconsolable, until the baseball men, who were also off in the grass on the side of the Belt Parkway leading their own search and rescue team, returned all my puppies. Those friends were “real” people to me.
< My Thoughts > "...those friends were “real” people to me…”
This is fascinating, because as Gleason, T.R. & Kalpido, M. (2014) ask, what ‘function’ does the imaginary friend serve the child? Parents can play detective. Baseball players have collectable, colorful ‘cards’ which portray them in action; or, provide close-ups of their faces. These are often accompanied by dates, statistics, and other information which may be memorized, internalized, and perseverated upon; thus, may be appealing to the person with autism.
Brodkin, A.M. Ph.D. (2001) psychologist, consultant, and author reveals to parents and teachers when it is time to wonder (and worry) regarding ‘imaginary friends’ –
- If the child’s involvement with his/her inner world grows greater over time and their real childhood pursuits diminishes.
- If a child becomes withdrawn and disinterested in social interaction for weeks or months at a time.
- If a child and parent have an exclusive relationship that consistently shuts out others, over a considerable period of time.
7% I was verbal, too verbal. I was smart, too smart for my own good.
< My Thoughts > “I was smart, too smart for my own good.”
Besides being an Aspie, this ‘twirling girl’ was undoubtedly a gifted student.
In the classroom, Smith, T., Polloway, E., et al. (2008), give us a picture of what a gifted student looks like:
- Becomes unusually upset at injustices.
- Often has a better reason than the teacher for not doing what you want done.
- Refuses to drill on spelling, math, facts, flash cards, or handwriting.
- Criticizes others for their dumb ideas.
- Seem bored and often sit without doing anything.
- Would only respect someone who is an expert on the subject. (Maybe that’s one connection with her imaginary baseball men…)
- Get answers correct, but can’t tell you how.
- Picks up skills without instruction.
- Seems cocky and self-assured about the things within their exclusive repertoire.
7% Baseball stats were not the only bits of data that I consumed and stored. I consumed books. I memorized them, and don’t you dare read the storybook to me and think you will skip over anything. If I had already heard the book, you were in trouble.
8% I honestly could not figure out why we were “learning” to read in school. I already knew how to read; therefore, all the kids around me knew also. We were just wasting time. My mother thought I was just being difficult, she had no idea I was hyperlexic.
What is hyperlexia? 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. The hyperlexic child appears (and is) very intelligent, but often fails to comprehend the context of their words, or fails to comprehend their meanings and social implications.
< My Thoughts > “Hyperlexia…”
In the classroom, the hyperlexic student may awe and amaze you, at first. Eventually, your observations lead you to believe that while this student can read any printed word, or nonsense word, you ask them to, they have no idea what that word means.
According to Newman, T., Macomber, D., et al. (2007), hyperlexia was first described in the literature in the 1960’s as a behavior that very young children with autism aka a ‘neurological dysfunction’ demonstrated exceptional word-reading ability.
This ability was above what would be expected given their IQ and at a higher level than they were able to comprehend. They report that later evidence suggested that this precocious ability of word recognition was disconnected from the more abstract skills of reading comprehension. So, while the child recognized and could read words, they had no understanding of the word.
The reason for this may be explained by Cardoso-Martins, C., Goncalves, D., et al. (2013) when they affirm that young hyperlexics can also pronounce non-words (lut, pon, kie) correctly. The researchers attribute this to the compelling evidence of the child’s ability to identify and segment speech sounds, as well as their knowledge of grapheme-phoneme correspondences. (A grapheme is the name given to a letter or combination of letters that represent phonemes (sounds). [Example – How many sounds (phonemes) in the word ‘ship’? Child would say… 3 sounds… sh… i… p.]
Unfortunately, these children can’t seem to retain the same sequencing of sounds in their working memory long enough to spell those words. Another oddity is that from a very young age they exhibit a compulsive interest in reading letters and may be fascinated by the numbers and letters on license plates, alphabet and number books for children, and phone books like Rain Man.
Yes, many hyperlexics often have the same obsession with numbers as they do with letters, but as with word comprehension… may not understand the value of those numbers.
< My Thoughts > “…may not understand…”
In school, reading, understanding, and following instructions is critical to one’s academic success. But, teachers mistake the hyperlexic student who can read math test instructions, or math word problems, as also being able to understand those words and do the problem. Not so!
9% Since I was already able to read, I often used “scripts” to speak to people. I recited passages from books that seemed appropriate at the time. I sang song lyrics, or in my case, screamed song lyrics. I also repeated what I heard adults saying applying it to my situations haphazardly. Because I was smart, everyone assumed that the words were my own. They were sure I knew exactly what I was saying. I am sure I did not.
< My Thoughts > “Because I was smart, everyone assumed that the words were my own.”
Great coping mechanism! Therapists and teachers may use ‘scripted’ responses to be used by the autistic child/student. These scripts are easily learned and can be relied upon to get them through awkward social situations.
15% To my mother, I was just being difficult; I wanted to do things my own way. I had a mind of my own and no one was going to change it – ever.
< My Thoughts > “I was just being difficult…”
So often at home and at school, the child feels ‘marginalized’ and ‘isolated’ from the group and their peers. When parents and/or teachers see a child as ‘just being difficult’ it does great harm to that child’s well-being and sense of self. And while they may not be able to ‘read’ people’s feelings and emotions, somehow, they know when people turn against them. An example of repetitious behavior might be that a scene that plays itself repeatedly. ‘The leaves dried up, snow fell, flowers bloomed, and days changed’ … but the routine never changed.
16% If I am interrupted it is impossible to resume what I was doing without delay. My brain needs time to make the switch.
When I am writing, and the phone rings, or the kids interrupt, it takes a few minutes to even process what is going on. Mostly I am angered by the interruption, even today as an adult.
< My Thoughts > "Mostly I am angered by the interruption."
Students with autism are often so absorbed in their own world, that it is almost painful to have that world disturbed.
Freeman, N., & Muraven, M. (2010) tell us that task interruption is especially harmful to a person, particularly if they are close to the completion of that task or it is one they are enjoying.
This has to do with self-control and self-regulation bringing on frustration with stopping and starting an activity. The more often it occurs, the more negative the person’s response at being interrupted.
95% As a child, I was carefree – happy, as I knew happy to be at the time. But when I grew into a young woman life got messy, and continued to come unraveled as time went on. I had difficulty making friends, raising children, and communicating with my husband largely due to my autism.
< My Thoughts > “I had difficulty making friends, raising children, and communicating with my husband largely due to my autism.”
Receiving and dealing with a late Asperger’s diagnosis can cause a huge shift in one’s adult life.
Hartwell-Walker, M. (2011) shares how her Aspie client explains receiving diagnosis, therapy, and learning the code for getting along. She says, “For many, diagnosis was a relief because as children, “teachers found them exasperating, disorganized and uneven in their academic performance despite being clearly bright.”
96% My boys now know I’m an Aspie, and to my 2-year-old I’m still just Mama. To my 8 year-old Aspie son, I’m still just mom. To my 13 year-old Aspie son, I am part mom, part superhero (according to him, my super-senses are super powers).
I am still the same person my husband fell in love with and married, but now we are learning more about autism together. We are learning how to communicate and understand each other better.
I rejoice in my Aspie-ness, and if you are on the spectrum, or someone you love is, you should too.
< My Thoughts > "I rejoice in my Aspie-ness."
Her Aspie-ness shines as she rewards us with an understanding of why they say “autism spectrum.” And, all the rest of her life is so worth reading about.
References:
Brodkin, A.M. Ph.D. (2001). ‘Don’t Forget Bonnie!’; Early Childhood Today, March, Vol14, Issue 6.
Cardoso-Martins, C., Goncalves, D., et al. (2013). What are the Mechanism Behind Exceptional Word Reading Ability in Hyperlexia?; Journal of Autism & Developmental Disorders, 43:3001-3003.
Cornacchio, D., Chou, T., et al. (2015). Clinical Consequences of the Revised DSM-5 Definition of Agoraphobia in Treatment-seeking Anxious Youth; Depression & Anxiety, 32:502-508.
Edelson,Stephen M. (2016). Toe-walking. Retrieved online from – https://www.autism.coqm/symptoms_toe_walking
Freeman, N., & Muraven, M. (2010). Don’t interrupt me! Task Interruption Depletes One’s Limited Resources; Motivation & Emotion, Vol 34; Issue 3, p. 230-241.
Gleason, T.R. & Kalpido, M. (2014). Imaginary Companions and Young Children’t Coping and Competence; Social Development, Vol 23 No. 4, 820-839.
Hartwell-Walker, M. (2011). Adult Asperger’s: The Relief of A Diagnosis; Retrieved online from: http://psychcentral.com/lib/adult-aspergers-the-relief-of-a-diagnosis/
Newman, T., Macomber, D., et al. (2007). Hyperlexia in Children with Autism Spectrum Disorders; Journal of Autism & Developmental Disorders 37:760-774.
Smith, T., Polloway, E., et al. (2008). Teaching Students with Special Needs in Inclusive Settings (5th Edition); New York, Merrill Publishing.
