From GALLERY of BOOKS on Autism; Focused excerpts examples of "What to do While You Wait" concerning – Know Your Child; #3 Prioritize Concerns, #3A Motor & Communication, #3B Cognition & Thinking Skills, #3C Social & Daily Living Skills; plus, in the website DOWNLOAD.
Know Autism – Know Your Child: With < My Thoughts > by Sara Luker; 2021
Just so you know what others have faced, and that you are not alone… here are a few focused excerpts from my Extended Book Reviews with < My Thoughts > by Sara Luker.
Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns.
Video record (using phone app) what you are seeing and how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child. Prioritize, try new things that are non-invasive and see what works and what doesn't. This will also help you find out what your child responds to. Some learn best by hearing, seeing, or doing.
Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'page' I’ll give you some ideas on where to start to discover who your child is 'behind' the autism.
What to do while you wait ~ Consider how the following excerpts may define #5 Know Your Child for you. How can you become better prepared to approach these topics, and what have you already tackled? What would you like to clarify, or better understand about your world of autism?
***Please ~ READ more in-depth information with Peer-Reviewed Journal articles with References, on Website
Note: SEE DISCLAIMER BELOW Extended Book Review Previews
Here is a ‘peek’ into the websites Extended Book Reviews. These will lead you to more information about your concerns. READ real stories from real people living in their world of autism. Find LINKs on the MENU listing GALLERY of BOOKS and/or find BOOKs by TITLE.
< My Thoughts > “Know Your Child” “Prioritize Concerns”
What do you worry about the most? What is the most dangerous and/or destructive thing or things your child does? Think about how to keep your child and family 'safe' as the 1st possible priority.
- hand-flapping
- body rocking
- object spinning
- rituals & routines
- ordering items or events
- insisting on sameness
- rigidity & inflexibility
- poor response to novelty
- obsessional restricted interests
- nonfunctional consuming interests (bus or train schedule)
MORE on Website MENU under – #3 PRIORITIZE CONCERNS, #3A Motor & Communication, #3B Cognition (Thinking Skills), #3C Social & Daily Living Skills.
Temperament, Type of learner.
Note: (8% indicates the eReader book location, instead of page reference numbers).
8% Mealtimes were another challenge. Dale was rarely hungry and in order to get him to eat at all, I tried to arrange the food in the shape of cars or Mickey Mouse or serve it on novelty plates.
< My Thoughts > “Dale was rarely hungry…”
There are all kinds of special diets for special kids. Maybe the child doesn’t like the look, feel, smell, taste of the food. It could mean he/she has ‘sensory’ issues with food. Then there are some medications (check side-effects) which can affect the appetite, find foods that can distress them. Try to discover and make notes about possible reasons your child has ‘food’ issues. It’s less likely that food reactions are a ‘behavior’, and more likely there is a solid reason or cause. One child simply needed to see the food prepared, instead of suddenly having it placed before him, with a command to ‘eat’.
The study by Sharp & Jaquess (2009) shows that there can be many different causes for ‘food aversion.’ When designing treatments for pediatric feeding disorders, particularly among children with autism, they try to identify the cause. They look at whether the child has poor oral motor skills (chewing and moving the food around in the mouth).
Note: (6% indicates the eReader book location, instead of page reference numbers).
6% Researchers are only beginning to really look at autistic adults in any number. Even though the first people diagnosed with autism are in their 70’s and 80’s now.
43% We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that.
It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there.
If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone – it’s okay. Those are not the things that matter.
8% I am uncomfortable with eye contact. I do try to look in people’s general direction and I look at noses, foreheads, and ears to simulate eye contact. I look at lips a lot. I supplement my hearing a lot with lip reading.
9% Eye contact is very intense, very personal and honestly? It’s kind of sexual. It is painful and embarrassing to look into someone’s eyes unless I am deeply connected with them.
< My Thoughts > “Eye contact is very intense, very personal and … honestly? It’s kind of sexual.”
The literature reflects that among individuals with autism, eye contact may serve as a threatening stimulus leading to avoidance behavior.
Note: (4% indicates the eReader book location, instead of page reference numbers).
4% They missed it; they missed me. I am a survivor; an autism survivor.
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.
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.
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.
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.
Note: (7% indicates the eReader book location, instead of page reference numbers).
7% In a study, Chambres, et al. (2008), found that “parents report that their children with autism are often judged as undisciplined and rude.”
“As a general rule, people with autism, especially children with autism, have a ‘‘normal’’ physical appearance. By contrast, their social behaviors fail to conform to social norms.”
“Their social difficulties show up in many everyday situations.”
“Onlookers in situations like these may point indignantly at what they consider to be blatant manifestations of bad manners.”
< My Thoughts > “…bad manners.”
Oh, and don’t forget ‘bad parenting’. Ugh!
“The children they studied had none of the problematic behaviors that were typically autistic, such as rocking or hand flapping.”
“Therefore, one can assume that children with autism are misjudged because they are mistaken for typically developing children.”
Note: (11% indicates the eReader book location, instead of page reference numbers).
11% “She hasn’t developed her ability to communicate verbally.” “Yes, but why?” “Well, when she hears speech, she doesn’t understand how to process it.”
“I understand that. But what causes that?” “It’s some sort of developmental delay.” And so the circle continued.
At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?
< My Thoughts > “At the time, it was very important for me to answer three questions. 1) What is wrong with my child? 2) What caused this? 3) How do we fix it?”
One of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the ‘disconnect’. As diagnosticians, the implication is that the parent should be pleased to get an autism determination which would provide services for the child. Another problem is that there is very little, if any, regulation when it comes to testing and qualifying for programs. My advice is –Try to do your homework!
As the mother, she wants to know the cause. Did she do something wrong? What can she do to correct the problem? As a teacher, she wants to know how to proceed with an appropriate intervention. As a community member, she wants to know what is available to her child and how to prioritize needs. As a human being, she wants to know how to ‘fix it’. We humans are problem solvers by nature. When something seems broken or ‘off’ somehow, you want to fix it.
Note: (69% indicates the eReader book location, instead of page reference numbers).
69% I never put much thought into it before, but now I can see that Scott communicated with me through body language, eye contact and even past experience.
When I say ‘body language’ the first thing that comes to mind is how he would get frustrated and bite his hand and jump up and down as he made different loud noises. He bit his hand so hard that it developed a callus.
Ironically, he used some of the same body language when he was excited, by jumping up and down and making loud sounds.
< My Thoughts > “…same body language…”
Some parents need extra hyper-vigilance for this very reason. One learns the difference between a happy tantrum and a not so happy tantrum. Our non-verbal son gets ‘in trouble’ for either kind, in the classroom, unfortunately. I say unfortunately, because he was just using the same communication for both emotions, making it confusing for ‘others’ to interpret. But it was an ‘economy of language-communication’, from his perspective, I suppose. Whatever works!
Note: (14% indicates the eReader book location, instead of page reference numbers).
14% Some other ‘less cute’ behaviors were there too – the rug-chewing tantrums, the incessant way he crashed his head against the slats of his bed.
Nicky (on the computer) showed me the page, and I was scathing. Nicky went back to the Net, searching for stronger evidence, and found the Diagnostic and Statistical Manual of Mental Disorders, DSM IV section on Autism.
Note: (10% indicates the eReader book location, instead of page reference numbers).
10% When we teach our children and ourselves this is right and this is wrong we start seeing it and feeling it where before we hadn’t. Stimming, rocking, flapping, jumping, flicking, poking, clucking – and more – are common with our autistic loved ones, and there is nothing wrong with them. Until we say that there is.
Then we begin an unfortunate feedback loop where we see it as wrong, they see it as wrong, and what used to feel good (or else why would they do it?) becomes something they dislike about themselves. Social rules exist for a reason; they are helpful.
Feel free to show your family why flicking a stranger’s hair won’t help them make friends and might make the stranger nervous.
< My Thoughts > “When we teach our children…”
There is so much wisdom in Tsara Shelton’s words. So many ‘teachable moments’ in a parent’s day. Sometimes we say things that we shouldn’t say, and sometimes we don’t say things that we should say. Words have power, especially words which are ‘positive’.
Note: (11% indicates the eReader book location, instead of page reference numbers).
11% It’s not an isolated world. While a lot of kids tend to withdraw or spend hours inside their repetitive behaviors, you can’t use this as an excuse to think the child doesn’t know what’s going on around him.
On the other hand, it’s also not an excuse to raise a feral child. It is not an excuse to let a child live without dignity by not requiring a certain level of behavior or by allowing him to embarrass himself.
14% I work with her very diligently BUT LOVINGLY to bring her out of her isolated world, one baby step at a time. This book is about helping autistic people, not enabling.
15% Carrie isn’t dying from a terminal illness, she’s just a very different person than I originally thought she was going to be.
Note: (11% indicates the eReader book location, instead of page reference numbers).
11% I’ve often thought that Jack does not appear to experience a full range of emotions in the same way you or I might. His spectrum disorder seems to prohibit his emotional pendulum from swinging widely across a landscape of feelings that often include shame and humility and empathy and amusement.
41% It was Sunday morning in late September – the day after my birthday. I was fuzzily turning pancakes on the griddle while Jack perched at the counter flicking the top to the syrup open and closed, open and closed.
I was just about to tell him to stop doing that, it’s gross to put your hands all over the lid when he asked, “Why was I born with autism?”
42% How do I tell my nine-year-old that I love his autism, but I also hate it and it’s beautiful but sometimes it’s so very, very ugly?
How do I tell him there are days I literally want to pull my hair out by the handfuls or, better yet, light my eyelashes on fire and run into the street screaming…
Or how anxiety – a sneaky sidekick to his Autism Spectrum Disorder – came in one February like a thief in the night, threatening to steal his joy, his happiness, the very smile on his face?
How his father and I are constantly concentrating on the brown-hair boy beneath the diagnosis?
How we can’t imagine him without it, without the beauty and wonder and color it adds to our world and our family?
REFERENCES from other sources –
Chambres, P., Auxiette, A., Vansingle, C., Gil, S. (2008). Adult Attitudes Toward Behaviors of a Six-year-old Boy with Autism; Journal of Autism Developmental Disorders; 38:1320-1327.
Sharp & Jaquess (2009). Bite Size & Texture Assessments to Prescribe Treatment for Severe Food Selectivity in Autism; Behavioral Interventions 24:157-170.
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As an autism mom, as an educator with a current State Teaching License (ending 2023), and a 2011 Master’s Degree in Special Education, this author shares her personal study, opinions, and experiences of over 30 years concerning Autism Spectrum Disorder (ASD), and related topics. The author’s mention of products, services, treatments, and interventions are not to be considered an endorsement, thereof. Nor does the author represent that any described products, services, treatments, and/or interventions expect to ‘cure’, or have any ‘long-term’ positive effect on a disorder or disease.
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