(1% indicates location in the Kindle version of the book, instead of page numbers.)
< Excerpts from the Forward/Acknowledgments, by Stephanie R. Marks >
1% My name is Stephanie Marks and I have autism. I am 38 years old, dark curly hair, bright green eyes. I have tiny, slender feet and I am very short. I am non-verbal. I look like other people you meet. I love to laugh and I often pray.
Autism controls my life and I can never change that. The monster called autism might jump into my thought pattern at any time and disrupt the flow of my thoughts.
When I was a child I could not find a way to stay in control. I will let you see a few of my days through my eyes. They are not in an order you can predict.
That is to let you see how it is in my mind, skipping from one thought to another.
For my friends and family, remember this is a work of fiction. Each day is fiction, but the thoughts and feelings are genuinely mine. The reason I am willing to open my mind to you is to help you see how similar we are.
< End of excerpts from the Forward/Acknowledgments >
< Excerpts from the book, Paula’s Journal, a fictional biography, by Stephanie R. Marks > with < My Thoughts, by Sara Luker >
1% None of us can climb into another person’s mind. Never are we allowed to go inside and wander around. That would be too revealing, too scary.
2% My name is Paula. I am autistic. You may not know what that means to me. It is my hope that if I share with you some of my secrets, you will get to know me and autism better.
I love trains. I love the click clack. I love the repetition. I love the predictability. Click clack, click clack. I know what to expect. Click clack, click clack. Coming down the tracks.
< My Thoughts > “I love trains…”
Susan Moffitt, http://www.autismkey.com/trains-and-autism, shares that “Many children with autism have a well-documented interest in trains, enthralled by their motion and predictable patterns.”
The editor of http://www.my favorite toys.com/autism, tells us that watching trains, as in videos, “can have a special value to children.” Children feel “a comforting effect… when the world is often frightening beyond their understanding.”
Developmental Pediatrician Amanda Bennett, of Children’s Hospital of Philadelphia, says that “For older children and adults, model trains can be fun to build and they have mechanical features that can be interesting to take apart and reassemble.”
Bennett goes on to say, “I often encourage caregivers to use trains as a motivation or reward to reinforce other desired behaviors. Many of my families use “taking the train as a motivation for their child to complete a medical visit without a tantrum.” She believes that everyone in the family can enjoy trains because, “trains really are pretty cool…”
While “Geeky Science Mom” tells us that “trains have mysterious mechanics and fascinating purposes. And that’s why everyone loves trains.”
3% Some people have blankets to snuggle into when they feel nervous or lonely. Some people have a friend. Some others find peace and composure listening to classical music.
Scooby Doo was one of my childhood favorite shows. It is comforting to me to watch it. Why then, is it so hard for people to understand? I watch it to relax. I do not think like a child. Scooby Doo. I love you. Click clack. Click clack. Click clack.
A Day – My class went to the zoo today. I hate to see the animals in cages. Animals need to be free. Sometimes I feel like I am in a cage. Autism is a cage. Freedom. I want freedom. No one understood when I started screaming and running away. I wanted away from the animals’ sad eyes. They bore into me. I could feel their feelings of discontent and desperation. I hate zoos. Click clack. Click clack. Click clack.
< My Thoughts > “I hate zoos…”
On this site… https://storify.com/denallsandra/seaworld-bad-for-your-kids, they talk about a book by Rob Laidlaw, called ‘Wild Animals in Captivity’. He points out that “sensitive children will be deeply disturbed at the practices of our most hallowed zoos.”
Disturbed at seeing “a caged lion pacing back and forth on a worn path and dolphins swimming in unending circles.” He shares that these are “repetitive abnormal behaviors.” “These disturbing animal behaviors are a common sight in many zoos.”
“This study (that Laidlaw references) shows that children are thinking about the animals being held in captivity with negative and confused emotions.”
Kahn, et al. (2008) finds their study revealed that “Children accorded bats the right to live free and to be wild.”
Ben Shalom, et al (2006) acknowledged that “social-emotional deficits are some of the diagnostic criteria for autism spectrum disorders.” But, holds that children and adults with ASD, do “experience some aspects of emotional processing” when viewing unpleasant images. While their neuro-typical counterparts cognitively processed and expressed “feeling afraid”, the ASD study participants also distinctly registered a physiological state of fear (heart pounding, cold hands, etc.), but remaining stoic when viewing disturbing images.
4% People hug and kiss and carry on. People show affection outwardly. I have had to teach myself how to fit into the world of normal people. It is the only way that I can fit.
Touching is not that comfortable. I can love people without touching them. They think I pull away because I don’t care but it is not that. Sometimes touching adds too much stimulation.
We are so different and yet we are so alike. We both want and need love to be happy. Why don’t we feel the same when we are touched? Someone else’s brain says “Great.” Mine says “Whoa.” Click clack. Click clack. Click clack.
< My Thoughts > “Why don’t we feel the same when we are touched?”
In much of the literature, we find that persons with autism are under-responsive to, and don’t often seek hugs, or other physical closeness. Probably, as Paula says, it feels too uncomfortable.
A Day – Here I am sixteen and not even been kissed. I am beginning to know that my dreams are just that – dreams. No one sees me as sixteen – cannot see me as sixteen. In my heart and soul I am as sixteen as anyone else is at sixteen. …Happy sixteen, Self. Click clack. Click clack. Click clack.
5% A Day – What a rainy day! It is one of those days that can make me wonder why I got up this morning. I need to remember the good things in life. I need to write it down so I will never forget.
< My Thoughts > “I need to remember the good things in life.”
Good advice! Here’s some more good advice from Thomas A. Richards, Ph.D., anxietynetwork.com.
“You are a thought-producing machine. Your automatic negative thoughts (ANTs) are only thoughts. They are not real. Your emotions and feelings are created by your thoughts. Thoughts can be changed. Happiness is a result of a thoughtful decision to be happy.”
Unfortunately, clinical depression many times accompanies autism symptoms. Just putting on a happy face, or thinking about only the happy things, will not take care of that situation. Professional diagnosis and intervention are needed.
6% In my senior year of high school, something wonderful happened. A lady by the name of Ellie contacted my mom about facilitation.
< My Thoughts > “something wonderful happened… facilitation.” Facilitative Communication (FC). “Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing in unassisted typing.” (Rudy, 2016).
While some, like Shermer (2016), thinks that FC may be just one more on a list of many ‘cruel discredited therapies’. Shermer also believes that most “gaps in scientific knowledge are filled-in with anyone’s pet theory and their corresponding treatment.”
But then Shermer goes on to say that there are those who believe and are enchanted by “… an autistic boy typing (with the assistance of a facilitator) a message on an iPad. He writes, “…now you can hear me. The iPad helps me to see not only my words, but to hold onto my thoughts.”
6% After their telephone conversation, Mom tried to explain it to me. I couldn’t understand. How could you point letters out on a board and get anywhere? So we had a meeting with Ellie, and then it started to make sense. After I saw the (Facilitation) board, it all made sense.
The board was 9 x 11 inches and set up exactly like a (typing) keyboard. First Ellie showed me how she helped another person use the technique.
Ellie would support that person’s wrist while he pointed out each letter to form words and sentences. It looked so easy! But it wasn’t. It was hard!
< My Thoughts > “It looked so easy! But it wasn’t. It was hard!”
Rudy (2016), agrees with Paula that it is not that simple. She says, “Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing in unassisted typing.” “To prove that the ‘typer’ is, indeed, typing his own thoughts… the ‘typer’ is asked to answer a list of questions that the supporter could not possibly know the answers to. (And, requiring a more complex answer than yes/no.)
She also cautions that “If you do try FC, be sure to investigate the provider and the therapist thoroughly to ensure you’re not the victim of a scam.”
5% Trying to facilitate made me feel like I was showing all my inner being. I tried it with Ellie. I couldn’t do it. This was the first time I had really had a chance to communicate with anyone, and it felt so strange!
Finally, we had to stop because I started screaming out of fear. I was so horrified!
Later that night, after I had calmed down, Mom got out the board Ellie had given us, and we sat down together and tried to facilitate. I could not believe how wonderful it was to talk to Mom!
All those years of loving and not being able to chat. Today I have been liberated, but the very thought of all those years of not being able to talk to Mom is unbearable. So many moments, lost forever, never to be recaptured.
We facilitated most of the night. It was so easy to facilitate with Mom…I didn’t realize it then but it was a matter of trust.
6% …But I still could not facilitate with Ellie. I did not know her well enough yet. After I got to know her and to trust her, it was easy to facilitate with Ellie. It just took some time to build up the trust. Thank you Ellie. Click clack. Click clack. Click clack.
< My Thoughts > “was so easy to facilitate with Mom…I didn’t realize it then but it was a matter of trust, with Ellie.”
Sue Rubin (Tripod.com) thinks that in order for FC to be successful, it requires three things: Emotional Support, Comfortable, and a Facilitator who can determine how much support is needed.
FC has its supporters and its skeptics. Some have debunked it, comparing it with a mystical board game. Others however, believe FC to be an authentic way of communicating.
Singer, et al. (2014) states, “Advocates for FC have continued to argue that they can substantiate claims made in support of FC.” They argue that “those ‘facilitated individuals’ were said to be the source of messages, although their studies did not include stringent control conditions.”
Singer says that, “…to agree with the belief that FC is possible for individuals with severe disabilities requires one to question the common views of autism as an intellectual disability.” And agreeing that those (seemingly severely disabled) individuals – do have the “untapped potential for speech and literacy.”
Singer goes on to say that, “When informing the question of (message) authorship,” one can ask: “What skills did they (the severely handicapped non-verbal individuals) have prior to beginning FC?” “How many years of ‘facilitation’ were needed before they were able to type independently?” “Did this new form of communication lead up to the emergence of speech?”
9% A Day – Today, I ran into an old friend in Wal-Mart. She is also autistic. Everyone says, “Hello,” but not Becky and not me. She stares at space or something behind me. We are both nervous. I have to walk away and I do mean, ‘Have To’. I do not know how to tell her I have missed her. I think she knows that. I hope she does.
“Wait, Becky. I am sorry to run away,” echoes in my head. How different for us. No hugs, no kisses. Just glances. Click clack. Click clack. Click clack.
< My Thoughts > “Wait, Becky. I am sorry to run away…”
Sicile-Kira (2014) says that “Social relationships are important to all people, yet are difficult for many on the autism spectrum to develop naturally.” “…having social skills, knowing about exected yet often unstated rules of behavior, and social boundaries.” “…there are different ways of teaching what is needed to be learned about relationships.” Some of the things she suggests are – Social Skills Training, Social Stories, Social Thinking, and hidden rules such as ‘assumed knowledge’, social hierarchies, and expected/unexpected situations.
As a teacher, I’ve heard from my students that they would enjoy having a friend… but they just don’t want to do something with them… every single day! Also, they say that they often have unwanted anger reactions to things and say or do things that people don’t understand or can’t forgive. They admit that they do feel lonely sometimes, but just feel too different from other people to try to be their forever friend.
10% A Day – I am autistic and also nonverbal. When I try to talk, funny sounds come out. They are not the sounds in my head. In my head, I am thinking clearly. In my mouth, I speak a foreign language. Mom would try and try to help me make sounds. I just could not and cannot. I wish she would stop trying. Speech therapy was helpful, but it did not teach me to speak. When I cannot communicate, stress and frustration overtake my actions. Click clack. Click clack. Click clack.
< My Thoughts > “Really it was a baby crying”
Although it is difficult to find any accepted data on this subject… I have a theory. It seems to me that when Sonny hears a crying baby and freaks out… it is because he is hearing ‘his own infant cries’. We constantly reassure him that someone is running to help the baby. That if the baby keeps crying, we will run to help it. By then, we have hit ‘mute’ on the TV/video… or, moved away from the crying baby in the store.
16% A Day – Click clack, click clack. It is mental rocking. Even my closest friends and family have never figured that out. Listening to trains relaxes me. Click clack. Click clack. Click clack.
17% A Day – Well, there are times when I will scratch and scratch until I break the skin. It feels good at first and then it starts to hurt.
< My Thoughts > “Self-stimulation…”
According to Rattaz et al. (2015) studies show that (Self-Injurious Behavior) “SIB were frequently associated with other challenging behaviors… irritability, stereotypy, hyperactivity, and impulsivity.”
They go on to say that “…abnormal sensory processing was also found to be a strong predictor of self-injury, as well as impaired social functioning.”
This group wants to find out if there was a difference between the kinds and the frequency of SIB and risk factors. Their study found that “there was no difference between risk factors in regards to gender of associated medical conditions, such as epilepsy, and association withSIBs.
Also, there is no correlation between risk factors and parents’ socio-economic status.” There was however, a higher correlation between a higher Childhood Autism Rating Scale (CARS) score and higher risk of SIB during adolescence.
Recent studies like Rattaz, include Oliver & Richards (2015) study which encourages determining risk factors for SIB, in order to start early intervention. When targeted early, even before self-injurious behavior begins, the severity of the behavior can be controlled. Early SIB markers, along with physical health assessments and a vigilance for discovering emerging behaviors.
17% When I was small, I would bang my head and bang my head. I know there are lots of theories about self stimulation. Why choose to use self stimulation with an action that hurts? Someone out there help me to understand. At first it feels good and then it starts to hurt. Self-stimulation – why would someone choose to do an action which hurts? Someone out there help me to understand. Someone who feels the same way I do, not someone with a theory. Click clack. Click clack. Click clack.
< My Thoughts > “Someone out there help me to understand.”
My thinking is that self-stimulation is in response to something else that is going on, either in the environment or within the person. Along with the strong impulse to ‘do something’, the self-stimulation may happen to offset an internal pain or ‘perceived pain’ that the person is experiencing.
Sequira & Ahmed (2012), see meditation as a way to respond to unwanted self-stimulation. They believe that “meditation is one of a few interventions that have been shown to effectively strengthen self-control, improve cognitive and behavioral performance.” They cite a few studies which have “reported these benefits; the mantra “Om” has been shown to synchronize respiratory signals, cardiovascular rhythms, and cerebral blood flow while another mantra, “SaTaNaMa,” was reported to significantly change cerebral blood flow.”
A Day –
Will you come play with me.
Will you stop staring at me.
Will you stop being afraid of me.
Autism is not catching.
Autism is not a disease.
School is hard.
Click clack. Click clack. Click clack.
< My Thoughts > “Autism is not catching. Autism is not a disease.”
Karen Wang, a Friendship Circle parent wears her “Ask Me About Autism” t-shirt when she volunteers at her children’s school. She says that advocacy would be impossible if she were invisible. She helps people celebrate diversity. Does My Child with Special Needs Scare You?; www.friendshipcircle.org.
“What is Autism? Autism affects the way a person’s brain and body works. It is not a disease and it is not contagious. You cannot catch autism from a classmate or friend.” www.autismsocietyag.org/wp.
19% A Day –
Swing way up high. Touch the sky.
Feel the cool breeze in my face.
Floating through the air.
Just feeling normal for a few minutes.
Swing up high, touch the sky.
Click clack. Click clack. Click clack.
< My Thoughts > “Swing. Swing way up high. Touch the sky.”
Lynn Moore at ( http://www.sensory-processing-disorder.com/sensory-integration-products.html offers some insight on how and why swinging offers many benefits as a part of an overall sensory integration regime. She writes: “Sensory integration is difficult for many autistic children. Swings offer help allow for better sensory integration.”
(So that students can swing, schools provide swings) “…students may have regular times that they utilize this avenue to sensory integration. Programs for autistic children may have a sensory integration room where swings and other vestibular activities are available rain or shine. Swinging for a child who is autistic is more than just play.”
“Parents of autistic children who wish to provide similar sensory integration to school programs may explore commercially made equipment through special needs equipment suppliers. Swinging provides essential vestibular movement to help children achieve normal developmental milestones, calming them and letting them have fun.”
19% A Day –
Believe in yourself.
My Maw Maw believes in me.
Not many people do.
Won’t they be surprised when they read my journal?
Believe. Always believe in yourself. Only then will someone else believe in you.
Click clack. Click clack. Click clack.
< My Thoughts > “Only then will someone else believe in you.”
Aaron Ben-Zeev Ph.D., says “In the Name of Love” that “The need to belong is crucial to our well-being.” He quotes famous songs:
“All the lonely people… where do they all come from?” The Beatles
“You belong to me…” Bob Dylan
“You don’t own me… Don’t say I can’t go with other boys…” Lesley Gore https://www.psychologytoday.com/blog/in-the-name-love/.
19% A Day –
Some days I am very depressed. It is a sad, slow process. It consumes me. Sadness is all over my body – creeping into the crevices of my brain, creeping into every vein and artery of my being. Sadness and sorrow. Sadness and sorrow. Click clack. Click clack. Click clack.
< My Thoughts > “Sadness and sorrow”
Jones, et al. (2011) tell us that the ‘task of emotional recognition’ requires a wide recognition range, plus sensing a variety of verbal and non-verbal cues. That not all adolescents recognize they are feeling a specific emotion, it is most prevalent in those with high intelligence. Paula seems very aware when her sadness overwhelms her. Understanding that may help her seek out some kind of respite.
23% A Day – We had a wonderful family day this weekend. We had barbecue, and after we ate, we watched my nieces play. They are our future. They are our past. Click clack. Click clack. Click clack.
< My Thoughts > Living life as an observer or a participant?
Finding their place in the social world is difficult for adolescents and adults with autism; especially when every day goes by and no one has lunch with you. Seems as if today was a day when Paula had a wonderful ‘participant’ day.
24% A Day – Life can be very difficult when you cannot speak. Today, I had a lot of difficulty. It started at lunch time in the cafeteria. One of the students called me a dummy who couldn’t even talk. …soon the room was filled with jeers and laughter. …I had to get away!
The school counselor walked in to see what was going on.
All of the students had stopped their jeering by that time.
The counselor only saw one thing.
Under the table.
She got me out from under the table and took me to her office and called Mom.
25% Behaviors do not always stem from anger. They can stem from sadness, fear and despair. They can stem from a desire to escape a hurtful situation. Click clack. Click clack. Click clack.
< My Thoughts > “…desire to escape a hurtful situation.”
Living life with a lot of sensory issues, with the added problem of not being accepted can keep everyone from understanding how hurtful life can become. Somewhere, someone has to be there for this person.
Added to that, mothers say that their child also “has never been invited to a birthday party, were almost always picked last for teams or groups in school, and ate lunch alone every single day,” according to Ofe, et al. (2016).
26% A Day – Trains are so neat. We are in Kansas City…Mom took me to Union Station. What a great experience! There was a small museum with simulated trains. Then there was a real train outside. I got my picture taken standing by the train engine…A wonderful, wonderful day. Click clack. Click clack. Click clack.
27% A Day – The movie Annie is my all-time-favorite show. I have watched it hundreds of times. She could be sad but she does not let her troubles keep her from having a full life. It is inspiring. Attitude is everything. Click clack. Click clack. Click clack.
< My Thoughts > living vicariously through someone… even a fictional ‘someone’ can be comforting and inspiring.
31% A Day – Autism. It is a prison. I am locked away from you. You are locked away from me. We are moving on different tracks. Every so often, we cross paths. Most of the time, we can see each other. But we are traveling at different speeds on different tracks. Click clack. Click clack. Click clack.
< My Thoughts > “Autism. It is a prison…” Annie’s imprisoned in an orphanage.
58% A Day – I wonder if anyone can imagine what it’s like to have autism? Autism, to me, is something I can’t escape. It jumbles my thoughts so that I have trouble reasoning. And then, at night, I have bad dreams.
< My Thoughts > “…can anyone imagine what it’s like to have autism?” No Paula, I don’t think anyone can truly imagine what it is to have autism… not even close. But, with your help we are trying to understand. We are trying to know autism. You have brought autism out in the open. Thank you, Paula.
58% Autism is a continuous battle. Each day, it’s the same. The battle resumes. Click clack. Click clack. Click clack.
Autism. The cause is hidden, but the effect is visible to all. Click clack. Click clack. Click clack.
< End of excerpt from Paula’s Journal >
< My Thoughts > I did so enjoy this day by day fictional version of Stephanie’s life with autism. Hope you will take her book and immerse yourself in it. Click clack. Click clack. Click clack.
REFERENCES used in < My Thoughts > are:
Ben-Shalom, D., Mostofsky, S., Haslett, R., Goldber, M., Landa, R., Faran, Y., McLeod, D.R., Hoehn-Saric, R. (2006). Normal Physiological Emotions but Differences in Expression of Conscious Feelings in Children with High Functioning Autism; Journal of Autism & Developmental Disorders; Vol 36:3, p395-400.
Jones, C., Pickles, A., Falcaro, M., Marsden, A., Happe, F., Scott, D., Tregay, J., Phillips, R., Baird, G., Simonoff, E., Charman, T. (2011). A Multimodal Approach to Emotion Recognition Ability in Autism Spectrum Disorders; Journal of Child Psychology & Psychiatry; 52:3, pp 275-285.
Kahn Jr., P., Saunders, C., Severson, R., Myers, O., Gill, B. (2008). Moral & Fearful Affiliations with the Animal World; Anthrozoos; Vol 21:4, p375-386.
Michelon, C., Baghdadli, A. (2015). Symptom severity as a Risk factor for Self-injurious Behaviors in Adolescents with Autism Spectrum Disorders; Journal of Intellectual Disability Research; Vol 50:8.
Ofe, E., Plumb, A., Plexico, L. Haaka, N. Nippold, M., Kelly, E. (2016). School-Based Speech-Language Pathologists’ Knowledge & Perceptions of Autism Spectrum Disorder & Bullying; Language, Speech & Hearing Services in Schools; Vol 47:1, p59-76.
Oliver, C., Richards, C. (2015). Practitioner Review: Self-injurious Behavior in Children with Developmental Delay; Journal of Child Psychology & Psychiatry; Vol 56:10.
Rudy, L.J. (2016). Does Facilitated Communication Really Work? https://www.verywell.com/facilitated-communication-and-autism
Sequira, S. & Ahmed, M. (2012). Meditation as a Potential Therapy for Autism: A Review; Autism Research &Treatment; published online- https://www.ncbi.nlm.nih.gov/pubmed/22937260
Shermer, M. (2016). If “facilitated Communication” is a Canard, Why Teach It? Facilitated Communication, autism and patient’s rights, by https://www.scientificamerican.com
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Singer, G., Horner, R., Dunlap, G. Wang, M. (2014). Standards of Proof: Facilitated Communication,& the Science-Based Practices Movement; Research & Practice for Persons with Severe Disabilities; vol. 39, Vol 3, p178-188.