#5C: What to do While You Wait...KNOW YOUR CHILD: KNOW AUTISM with < My Thoughts > by Sara Luker
Thompson (2012) tells us that, “To a child with autism, the world is a very confusing and sometimes scary place. They don’t understand what people say to them and the meaning behind people’s actions. They don’t understand what will occur, in which order it will occur, or when it will occur.” Children who don’t understand these things start building up a fear of ‘changes’. If a daily routine is changed, aggression occurs, intending to make their parents restore things to the way they ‘ought’ to be – from their perspective.
Thompson (2012) tells us that, “To a child with autism, the world is a very confusing and sometimes scary place. They don’t understand what people say to them and the meaning behind people’s actions. They don’t understand what will occur, in which order it will occur, or when it will occur.” Children who don’t understand these things start building up a fear of ‘changes’. If a daily routine is changed, aggression occurs, intending to make their parents restore things to the way they ‘ought’ to be – from their perspective.
Parents ask, “Is she ever going to be like other kids?” Or say, “Her rituals are driving us crazy!” “She has to be the first one in the car.” “If she isn’t she starts kicking her mother or me, screaming, and throwing herself on the ground.” “She has to have things her way.” “She’s spoiled!”
Understanding that the child is NOT spoiled, the child has autism. She has no idea what other awful thing is going to happen if she doesn’t get in the car first.” Changing routine for this child is possible, but it has to be done in stages, over several days or even weeks. No just springing it on her, sending her into a panic.
< My Thoughts >
Hopefully you have learned something about your child’s temperament. Maybe you have found out that your child is just a ‘rascal’ at heart. Or, like Sonny, has the sweetest of dispositions. So, how do you ‘know’ your child’s autism, and the ‘core’ nature of it? By learning the your child’s symptoms, you can understand the methods that will help your child, and those that probably won’t.
Some parents are ‘spontaneous’ by nature. They are instant ‘problem solvers’, changing-up things in the blink of an eye as necessity requires. But, this ‘changing-up things in the blink of an eye’ can send a child with autism spinning out of control. Some children need to have a ‘social story’ about a ‘change’ which might occur. Knowing this can help family situations go more smoothly, with less drama. Smiles.
Note: More about Social Stories in BLOG #3B What to do While You Wait... Work on these SKILLS... COGNITION.
Getting help with behavior problems can come from medical solutions or behavioral interventions. Finding out the source of the tantrum, meltdown, aggressive outburst, compulsive behavior and self-injury can not only help the child, but may keep the family from falling apart. Prepare yourself parents; there are no easy answers because so many domains are involved and so many people out there will be trying to insert themselves into your life.
According to Thompson (2012), intensive home-based therapies requiring strong family skills and collaboration is not a viable option for them. This is for a variety of mental health reasons, personality characteristics, belief systems, and other reasons some families are just unable to do this. Other families, however, may find that they can participate in interventions with reasonable goals, professional support and training, and other school or center-based services for their child.
When it comes to providing special insights into children with ASD, doctors, teachers, therapists, and interested professionals, all have their own perspectives and solutions. But in the last analysis, parents are the ones who know their children best.
Parents serve as the conduit through which teachers’ and therapists’ efforts are realized. Parents and family must be comfortable with daily routines, their role and responsibility and the ecology of the home environment. Teachers and therapists play a very important role in your child’s life. But in the end, limited progress can be made without the full cooperation and participation of the family. And, doctors confess, “Despite the progress that has been made, we are not able to stop Autism.”
Understanding that the child is NOT spoiled, the child has autism. She has no idea what other awful thing is going to happen if she doesn’t get in the car first.” Changing routine for this child is possible, but it has to be done in stages, over several days or even weeks. No just springing it on her, sending her into a panic.
< My Thoughts >
Hopefully you have learned something about your child’s temperament. Maybe you have found out that your child is just a ‘rascal’ at heart. Or, like Sonny, has the sweetest of dispositions. So, how do you ‘know’ your child’s autism, and the ‘core’ nature of it? By learning the your child’s symptoms, you can understand the methods that will help your child, and those that probably won’t.
Some parents are ‘spontaneous’ by nature. They are instant ‘problem solvers’, changing-up things in the blink of an eye as necessity requires. But, this ‘changing-up things in the blink of an eye’ can send a child with autism spinning out of control. Some children need to have a ‘social story’ about a ‘change’ which might occur. Knowing this can help family situations go more smoothly, with less drama. Smiles.
Note: More about Social Stories in BLOG #3B What to do While You Wait... Work on these SKILLS... COGNITION.
Getting help with behavior problems can come from medical solutions or behavioral interventions. Finding out the source of the tantrum, meltdown, aggressive outburst, compulsive behavior and self-injury can not only help the child, but may keep the family from falling apart. Prepare yourself parents; there are no easy answers because so many domains are involved and so many people out there will be trying to insert themselves into your life.
According to Thompson (2012), intensive home-based therapies requiring strong family skills and collaboration is not a viable option for them. This is for a variety of mental health reasons, personality characteristics, belief systems, and other reasons some families are just unable to do this. Other families, however, may find that they can participate in interventions with reasonable goals, professional support and training, and other school or center-based services for their child.
When it comes to providing special insights into children with ASD, doctors, teachers, therapists, and interested professionals, all have their own perspectives and solutions. But in the last analysis, parents are the ones who know their children best.
Parents serve as the conduit through which teachers’ and therapists’ efforts are realized. Parents and family must be comfortable with daily routines, their role and responsibility and the ecology of the home environment. Teachers and therapists play a very important role in your child’s life. But in the end, limited progress can be made without the full cooperation and participation of the family. And, doctors confess, “Despite the progress that has been made, we are not able to stop Autism.”
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Sicile-Kira (2014) tells us that due to the nature of Autism, it is difficult to ascertain the cognitive level of people on the spectrum. Some or all of their senses are a 100 times more sensitive than others and therefore they process the environment differently. More and more it is understood that there is a challenge with ‘output’. That is they are NOT able to respond verbally to what they hear and understand.
This author goes on to say that the field of neuroscience has grown tremendously in the last decade, giving us a greater understanding of the brain, the spinal cord, and networks of sensory nerve cells which are involved. We are learning how neurons, throughout the body relate to behaviors, reason, and emotions – all important to the understanding of autism. We understand that the first step in gaining and knowing autism is to gather knowledge.
This author goes on to say that the field of neuroscience has grown tremendously in the last decade, giving us a greater understanding of the brain, the spinal cord, and networks of sensory nerve cells which are involved. We are learning how neurons, throughout the body relate to behaviors, reason, and emotions – all important to the understanding of autism. We understand that the first step in gaining and knowing autism is to gather knowledge.
Sicile-Kira also believes that individuals with autism have ‘meltdowns’ – expressions of frustration at themselves or others. It’s important to understand that all behavior is a form of communication and try to understand what is going on. Could the child be having a form of self-aggression; pain; sensory overload, or having a type of Post Traumatic Stress Disorder (PTSD) flashback? Over time, individuals can learn to self-regulate these problems, but they will need help.
For the very young, and those who are nonverbal, behaviors can be the only way for them to communicate a problem with their surroundings, or pain, anxiety, and even panic attacks. The brain structure of many people with ASD is unlike ours, with some processing circuits wired differently. It is important to realize that they cannot help what they are doing; they are NOT ‘just being difficult’.
She tells us that some children’s digestive systems are not working properly, making it impossible to digest essential nutrients needed for brain development. If the child has sensory challenges, this will impact everyday life. But, that no matter how bad the behavior or situation seems, there is always a solution. And mainly it is the parents’ attitude that will make the biggest difference.
And, for the family, sometimes it’s hard to harbor tender feelings toward someone who invades your personal space or tears your favorite pictures off the wall. Some of the behaviors exhibited by children with ASD is pretty typical of a much younger child’s behavior. It is hard for a sibling to deal with the idea that this child’s emotions and behaviors may never match his or her actual age.
< My Thoughts > “…much younger age.”
When Sonny acts out unexpectedly in front of others who don’t really know him, I often find myself saying… “I know he looks like an adult, but when he doesn’t understand what’s going on his Autism makes him seem like he’s stuck in the ‘Terrible Two’s’. Guess that’s why some call Autism the ‘invisible disability.’
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Reference:
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company
Thompson, T. (2012). Making Sense of Autism; Second Edition. Baltimore, Maryland: Brookes Publishing Company.
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Next, Siri & Lyon say that mastering the functional capacities of the whole child will help them move up the ‘developmental ladder’. Strengthening the ‘whole child’ means attending to regulating their nervous system, their broad range of emotions, and their environment, in order to communicate physically and verbally. This will help them socialize and to think.
They caution parents that an intervention should have a model which knows how to identify areas needing support. The model would do this by looking at the child’s strengths as well as the challenges they face. This program should lead the child to more ‘functional’ behavior.
An efficient educational and behavioral management program will first require a thorough understanding of your child. For instance, how are they unique, where are they cognitively, how do they process information (seeing & looking, hearing & listening, and/or touching & doing)?
< My Thoughts > “…how do they process information?”
In other words, how do they learn? With or without autism, a child has a learning style, or a combination of styles. This is from a somewhat simplified version to help you get an idea about children who are one or more of the following…
Visual Learners, Auditory Learners, or Kinesthetic Learners:
Retrieved from: What’s Your Learning Style? https://www.schoolonwheels.org/pdfs/3121/Learning-Styles.pdf
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Sicile-Kira, C. (2014) warns parents, be prepared to answer and ask a lot of questions. “During routine well-child visits, development screening is a way to tell if a child is learning basic skills. During this time the doctor observers and interacts with the child, and asks the parent questions. The doctor wants to know how the child learns, communicates, moves, and behaves.
Parents need to ask a lot of questions, too. Ignorance is not bliss and life will become easier if you ask questions about things you don’t understand. If you want to ask all your questions at once, write everything down. Learn to ask the ‘right’ questions which will bring out the answers that people would not normally volunteer, if you didn’t press them for clarification or more information. Or, people may think it’s not important or doesn’t pertain to you, or won’t help you.
Learn to answer questions in a way that fully explains you situation. The question “Can your child walk?” May be answered as a “Yes”, but that doesn’t express your concerns. “He runs, not walks and has no concern for his safety.” Or, “She walks on her tip-toes like a ballerina.”
< My Thoughts > “…in a way that fully explains you situation.”
If you can show a cell phone video of your child, that helps someone see what you are seeing in your child. Then it’s up to you to explain more fully if the child does this only occasionally, or constantly. Remember that you are trying to express your child’s level of ‘need’, as well as trying to get to know your child’s autism.
Then, I like to say, “Are there questions that I’m NOT asking which would help me understand autism (or my child) in a better way?” Or, I may ask, “When I get home and think of more questions or have forgotten to tell you something important, is there a time when I can call and talk to you?”
Another thing I say, when feeling trapped or overwhelmed, “What would you do if it were your child?” Run your questions by a friend or a family member who perhaps can help you articulate them more easily. Try to ask specific questions, because vague questions will bring vague answers. Don’t be afraid to speak up if you feel the person’s philosophies or attitude doesn’t match yours or you family’s. Smiles.
Reference:
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company
/////
Bodfish (2004) believes that within each child there are “’islands’ of ability surrounded by a ‘sea’ of disability.” That sometimes those ‘islands’ are occasionally glimpsed, but NOT fully revealed. He warns that when a proposed ‘treatment’ claims to ‘cure’ the ‘core’ features of autism it most likely has ‘largely escaped’ scientific validation and empirical evidence to that end. One of the reasons for this is that autism affects many domains.
In order for a treatment to be successful in any ‘one’ domain, say ‘behavior’, it must ‘deeply impact’ that domain area. And, it also has the potential to have adverse effects. Any treatment, this author reminds us, must involve the whole family into the process, in order to be effective. He claims that the most successful motivational procedures are to focus on following the child’s lead. That includes working with his or her interests, giving the child an opportunity to use expressive language throughout the day and in the child’s natural environment.
< My Thoughts > “…working with his or her interests…”So important to know your child!
According to Bodfish, the core features of autism, as he describes them, are: noncompliance, self-injury, and aggression. Symptoms seen in these core areas are a variety of repetitive behavioral symptoms. These can be:
Much depends on where the child is on the Autism Spectrum (High functioning Asperger’s to lower-functioning Autism) as to how the symptoms and severity will differ. Bodfish continues to say that “Simply put, treatment may bring about less flapping, more words, and more interactions, but that is all it does.” The children learn more socially acceptable means of coping, but the autism will still be there.
< My Thoughts > “…the symptoms and severity will differ.”
An autism support group has named themselves the ‘Snowflake Group’ they say, “because children with autism are like snowflakes – they are beautiful; each one uniquely different and liable to meltdown at any time!”
Reference:
Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet?; Mental Retardation & Developmental Disabilities Research Reviews; V.10, p316-326.
////
This ENDS #5C: What to do While You Wait...KNOW YOUR CHILD: KNOW AUTISM with < My Thoughts > by Sara Luker
////
NOTE about: “Programs, Therapies, & Interventions”
Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence with ‘autism’ may imply ‘cure’ or ‘long-term’ effect. That is NOT the intention here.
Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.
There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. To some, AUTISM is a business. So, remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation here.
Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before us. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only; to begin your investigation and search for knowledge. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder.
Regards,
Sara Luker
In other words, how do they learn? With or without autism, a child has a learning style, or a combination of styles. This is from a somewhat simplified version to help you get an idea about children who are one or more of the following…
Visual Learners, Auditory Learners, or Kinesthetic Learners:
- Visual Learners learn by seeing & looking. They may even find ‘hearing and doing’ distracting.
- Auditory Learners learn by hearing & listening. They may find ‘seeing & looking’ distracting and even irritating.
- Kinesthetic Learners learn by touching & doing. They may get irritated and distracted by too much visual and/or auditory information.
Retrieved from: What’s Your Learning Style? https://www.schoolonwheels.org/pdfs/3121/Learning-Styles.pdf
////
Sicile-Kira, C. (2014) warns parents, be prepared to answer and ask a lot of questions. “During routine well-child visits, development screening is a way to tell if a child is learning basic skills. During this time the doctor observers and interacts with the child, and asks the parent questions. The doctor wants to know how the child learns, communicates, moves, and behaves.
Parents need to ask a lot of questions, too. Ignorance is not bliss and life will become easier if you ask questions about things you don’t understand. If you want to ask all your questions at once, write everything down. Learn to ask the ‘right’ questions which will bring out the answers that people would not normally volunteer, if you didn’t press them for clarification or more information. Or, people may think it’s not important or doesn’t pertain to you, or won’t help you.
Learn to answer questions in a way that fully explains you situation. The question “Can your child walk?” May be answered as a “Yes”, but that doesn’t express your concerns. “He runs, not walks and has no concern for his safety.” Or, “She walks on her tip-toes like a ballerina.”
< My Thoughts > “…in a way that fully explains you situation.”
If you can show a cell phone video of your child, that helps someone see what you are seeing in your child. Then it’s up to you to explain more fully if the child does this only occasionally, or constantly. Remember that you are trying to express your child’s level of ‘need’, as well as trying to get to know your child’s autism.
Then, I like to say, “Are there questions that I’m NOT asking which would help me understand autism (or my child) in a better way?” Or, I may ask, “When I get home and think of more questions or have forgotten to tell you something important, is there a time when I can call and talk to you?”
Another thing I say, when feeling trapped or overwhelmed, “What would you do if it were your child?” Run your questions by a friend or a family member who perhaps can help you articulate them more easily. Try to ask specific questions, because vague questions will bring vague answers. Don’t be afraid to speak up if you feel the person’s philosophies or attitude doesn’t match yours or you family’s. Smiles.
Reference:
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company
/////
Bodfish (2004) believes that within each child there are “’islands’ of ability surrounded by a ‘sea’ of disability.” That sometimes those ‘islands’ are occasionally glimpsed, but NOT fully revealed. He warns that when a proposed ‘treatment’ claims to ‘cure’ the ‘core’ features of autism it most likely has ‘largely escaped’ scientific validation and empirical evidence to that end. One of the reasons for this is that autism affects many domains.
In order for a treatment to be successful in any ‘one’ domain, say ‘behavior’, it must ‘deeply impact’ that domain area. And, it also has the potential to have adverse effects. Any treatment, this author reminds us, must involve the whole family into the process, in order to be effective. He claims that the most successful motivational procedures are to focus on following the child’s lead. That includes working with his or her interests, giving the child an opportunity to use expressive language throughout the day and in the child’s natural environment.
< My Thoughts > “…working with his or her interests…”So important to know your child!
According to Bodfish, the core features of autism, as he describes them, are: noncompliance, self-injury, and aggression. Symptoms seen in these core areas are a variety of repetitive behavioral symptoms. These can be:
- 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)
Much depends on where the child is on the Autism Spectrum (High functioning Asperger’s to lower-functioning Autism) as to how the symptoms and severity will differ. Bodfish continues to say that “Simply put, treatment may bring about less flapping, more words, and more interactions, but that is all it does.” The children learn more socially acceptable means of coping, but the autism will still be there.
< My Thoughts > “…the symptoms and severity will differ.”
An autism support group has named themselves the ‘Snowflake Group’ they say, “because children with autism are like snowflakes – they are beautiful; each one uniquely different and liable to meltdown at any time!”
Reference:
Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet?; Mental Retardation & Developmental Disabilities Research Reviews; V.10, p316-326.
////
This ENDS #5C: What to do While You Wait...KNOW YOUR CHILD: KNOW AUTISM with < My Thoughts > by Sara Luker
////
NOTE about: “Programs, Therapies, & Interventions”
Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence with ‘autism’ may imply ‘cure’ or ‘long-term’ effect. That is NOT the intention here.
Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.
There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. To some, AUTISM is a business. So, remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation here.
Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before us. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only; to begin your investigation and search for knowledge. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder.
Regards,
Sara Luker