Focused Excerpts from the book –
Extended Review with < My Thoughts > by Sara Luker (Note: This is based on fictional characters.)
(9% indicates location in the Kindle version of the book, instead of page numbers.)
9% “Let’s go for a walk.” Tomas knew that his wife had been cooped up in the apartment for far too long. When Manny was younger, she used to take him out often, but as he’d grown bigger and stronger and more unpredictable, it was no longer safe for her to go out alone with him.
They walked the same route every time – had to. Any deviation bothered Manny so badly. When he was younger, he’d throw himself to the sidewalk, flailing and wailing if they tried taking a different street. Tomas would simply hoist the screaming child over his shoulder and they’d head home. Now that Manny had some size on him, this was harder to do. Plus, strangers looked at a tantrumming two year old in one way, but a half grown child doing the same thing was an entirely different matter.
10% Immediately, Manny’s arms came up at his sides, his hands elevated and that keening noise started in the back on his throat. His parents knew what this meant. Manny might not speak, but he communicated, for sure. At least, sometimes.
< My Thoughts > “Communication…school age”
Franco, Davis & Davis (2013) believe that because children with autism don’t develop early ‘intentional’ communication skills, they will develop flapping and challenging behaviors such as hitting, as they grow older. They say that the older child needs to be taught three important communication behaviors: vocalization, eye gaze, and gestures. They are considered the basic components of prelinguistic ‘requesting’ and ‘commenting’ acts. That older children who may never develop complex spoken language can still increase a beneficial, clear consistent means of communication. Studies show that there are positive outcomes for communication treatment planning with older children.
10% “All right, son. I understand. Papa made a mistake is all. We’ll go straight.” He pointed down the way they had originally been heading. Manny’s noises stopped and he walked ahead of his parents on what he knew was the correct path. Tomas grabbed Maria’s hand and gave it a squeeze. “Just hang loose and it’ll be all right. Show him we’re relaxed and we’ll walk right on by.”
14% Mel tried to explain. “Kids with autism take in things that they see easier than things that they hear. That’s why a story like this helps – the child does not just listen to what we’re saying but they see the visual of what is happening.”
“Kids with Autism? Oh, that’s not our Manny.”
It was Mel’s turn to look skeptical. She raised one eyebrow. “Where does he go to school?”
“He is not in school. He stays home with us.”
“May I ask why?”
“He is not like other children. He gets upset and he, well, he doesn’t talk.”
“I understand that he does not speak and that he might get upset, but that does not mean he can’t go to school.”
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(Catching up with Tomas and Manny) “She told me that kids with autism like to look more than listen, or something like that.”
< My Thoughts > Visual learners…
Erdodi, et al. (2012) reported that persons with ASD generally have better visual than verbal ability. But, this can depend on the novelty or complexity of the presentation of the new information. Auditory verbal learning, they point out, results in yet another pattern of performance; such as taking extra time and learning context clues. Also, because students can’t seem to organize well, they will have difficulty learning visual lists of words.
The reasons for visual learning preferences, according to Sokhadze, et al. (2017) may be that the thinking (cognitive) activity is related to working memory, which is triggered by visual stimuli. And, because of the abnormal brain connectivity in persons with ASD, it explains why visual details are more important than the picture as a whole. ‘Response selection’ can also be influenced by the novelty of the stimuli. Therefore, a person with ASD will more easily pay attention to a visual prompt before an auditory one. Studies show that a ‘novel’ visual prompt will draw even more response.
“That’s what she said.”
“Wonder why she’d say the word autism if you were talking about Manny, or about her son?”
29% “We were fine, Tomas, although I admit that this is much nicer, these walks and going to the bakery and talking to people. Do you think Manny likes it, too? Is that why he’s calmer because he’s getting out and doing different things?”
”I’ve never thought of it before. Do you think it’s possible that a kid like Manny could get bored?” with a sleepy Manny bathed, cuddled and tucked into bed, Maria and Tomas had time to themselves.
Maria broached the subject that had been on her mind. “Tomas, what do you know about autism?”
“Not much. I saw that old movie, Rainman when I was a kid. I think on television I’ve seen scenes of people who rock back and forth, bang their heads, and are lost in their own worlds. Why?”
“Because several people now have mentioned autism and Manny. I think they think that he’s autistic.”
“No, that can’t be. No. they don’t know our son. He’s not hopeless like those people.”
“You know Jeff – the guy at the bakery who cooks and fixes computers?”
“Yesh, didn’t they introduce him as Mel’s brother?”
“Yes. He has autism.”
“No, that’s not right. He can’t.”
“He told me so himself today. He seems definite about it. And, he says that Kyle, Mel’s son has autism also.”
Maria shifted her head on Tomas’s shoulder so she could look at his face in the moonlight. “He says that all people with autism are different and that that view I had of autism is only one part, a small part of autism. Jeff says that autism is just one of his characteristics.
I’ve seen Kyle there. He seems like every other kid.”
According to Jeff, he’s a kid who has autism.”
< My Thoughts > “Looks so normal…”
Hoogsteen & Woodgate (2013) say that “…autism was invisible to the untrained eye yet visible in ways that people deemed as undesirable.” “They have no clue because “C” looks perfectly normal. He walks. He talks. He doesn’t have, you know, a stumble or a limp, so you can’t see a physical disability.”
Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’. Families seem to experience long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’ looking so normal.
29% They were silent for a while. Then, Tomas asked, “What makes Jeff think that Manny could have autism?”
“He asked me why I thought Manny rocked and flapped his hands, didn’t talk and made noises.”
Tomas digested thin information. “Why do you think he does those things?”
“I asked Jeff that if Manny did have autism, would he ever be like Jeff. He said that Manny will need help – special help.” “Then he asked me why Manny is not in school.”
33% “You have been most kind to us. Certainly, we should like to hear what you have to say.”
Mel studied him carefully. “Well,” she began, “life can be especially frustrating for kids who don’t talk. They have no way to make their wants and needs known. Often, it’s up to the parents to play a guessing game; sometimes we are not very good at it, frustrating the kid even more.”
“Tomas nodded. “We see this often, but don’t know what to do. If only he’d just say what it is he’s after.”
51% Mel continued. “It’s tough for kids who are nonverbal. They can’t tell us what they want or need, so we have to become keen detectives, watching their behavior and using trial and error.
< My Thoughts > School on the Short Bus… and… Diagnosis, Denial & Doctors.
Mandell & Novak (2005) tell us that cultural influences, experiences with the health system and parents’ beliefs play a role in whether or not a child ever is diagnosed. Often times, they say, parents don’t even know they should be making a decision about their child. Or, they assume that “He’ll grow out of it.” And then, Latino children who are diagnosed were six times more likely to have parents who sought non-traditional treatments. Added to that, the authors believe that clinicians may delay treatment or diagnosis because they don’t believe the parents will be successful in following-through with recommended interventions.
60% “What do we do now?”
Mel returned to the report – “Pretty standard stuff. Exposure to other children, follow the recommendations of a speech/language pathologist, referral to an occupational therapist for follow-up on sensory strategies, social skills training, maintain a language-rich, structured environment, support routines with visuals and work closely with your school.”
“There is not one thing listed here that we don’t do at school and do well. You won’t need to take time off work to run Manny to appointments; the therapists will come right to the school. And, when they aren’t there the school staff will carry on with the programming these specialists lay out.”
“And all this would happen at school.”
“Definitely. All this and much, much more.” Mel’s encouraging expression contrasted with that of the anxious mother and father in front of her.
End of Focused Excerpts from the book.
REFERENCES used in < My Thoughts > are:
Erdodi, L., Lajiness-O’Neill, R., Schmitt, T. (2012). Learning Curve Analyses in Neurodevelopmental Disorders: Are Children with Autism Spectrum Disorder Truly Visual Learners?, Journal of Autism & Developmental Disorders; V43, p 880-890.
Franco, J., Davis, B. & Davis, J. (2013). Increasing Social Interaction Using Prelinguistic Milieu Teaching with Nonverbal School-Age Children with Autism, American Journal of Speech-Language Pathology; V22, p 489-502.
Green, L. (2013). The Well-Being of Siblings of Individuals with Autism, Archive of International Scholarly Research Neurology (ISRN); V2013; Art. 417194.
Hoogsteen, L. & Woodgate, R. (2013). The Lived Experience of Parenting a Child With Autism in a Rural Area: Making the Invisible, Visible; Pediatric Nursing; Vol. 39:5.
Mandell, D., & Novak, M. (2005). The Role of Culture in Families’ Treatment Decisions for Children with Autism Spectrum Disorders, Mental Retardation & Developmental Disabilities Research Reviews; V11, p 110-115.