#5A Know Your Child: GETTING STARTED with < My Thoughts > by Sara Luker
Parents have cautioned me, “We don’t want to separate my child from the autism.” “Autism is a part of my child.” “We love our child, autism and all.”
Of course you love your child ‘Autism and all!’ We love Sonny autism and all, but we have to know whether he’s banging his head because of a headache, or because of a sensory issue. Is he pressing his face against the door jamb because he needs to feel some pain? Or, is he in pain from a toothache or a sore in his mouth? That’s the difference, the ‘separation’ that I’m talking about.
The Centers for Disease Control & Prevention (CDC) https://www.cdc.gov/ncbddd/autism/treatment.html tells parents the following:
“It is also important to remember that children with Autism Spectrum Disorder (ASD) can get sick or injured just like children without ASD. Regular medical and dental exams should be part of a child’s treatment plan. Often it is hard to tell if a child’s behavior is related to the ASD or is caused by a ‘separate’ health condition.
For instance, head banging could be a symptom of the ASD, or it could be a sign that the child is having headaches. In those cases, a thorough physical exam is needed. Monitoring healthy development means NOT only paying attention to symptoms related to ASD, but also to the child’s physical and mental health, as well.”
< My Thoughts > “Often it is hard to tell if a child’s behavior is related to the ASD or is caused by a ‘separate’ health condition.”
A child can have Attention Deficit Hyperactivity Disorder, but NOT autism. So much of how the doctors and other professionals help you and your child is through ‘parent-reporting’. Then, there are medication side effects which also need close monitoring. You need to know… are there gastrointestinal (GI) problems because of the medication your child is taking, or possibly diet issues?
GI issues are common in children with autism. But, having GI issues does NOT indicate autism. You see the slippery slope we are on. ‘Know your child’ because, misinterpreting your child’s actions can lead the doctors and professionals down the wrong path, so to speak.
What is the child’s ‘normal’ and what is a concern that may be something else? When the literature refers to “separating the child from the autism,” this is NOT intended to “find a cure” or to suggest any other interpretation. The concern, instead, is because parents are often faced with pages of questionnaires, plus their child is faced with hours of assessment. My hope is to sort of ‘introduce’ you to the types of questions you may be asked during this ‘process’. Finding programs, therapies, treatments, interventions, and all the things that you will be subjected to are somewhat overwhelming. To clarify, my intention here is – to ‘know your child’ well enough to guide the process of finding ways to help your child lead a productive and independent life.
Here are some random thoughts about what to look for, or what you may be seeing… as we get started.
COMMUNICATION: How and what is your child communicating and how will you know? Developing some type of communication is an essential first step. Some parents may start with easy ‘baby’ sign language. Just so you know… very small infants can learn how to sign. Even if they make signs up, as Sonny does, it’s okay as long as you both know what it means.
Try to keep a positive approach which will help your child feel cherished and worthy of all the fuss. Remember too, that throughout childhood, kiddos hear and understand (receptive language) much, much more than we think that they do. They ‘pick up’ on your attitude and feelings. There are studies that show that sensitive children see people’s auras. Your neurotypical child may say, “The teacher doesn’t like me.” What he doesn’t tell you is that when he approaches her, her aura turns brown. Brown is a ‘yucky’ color, like dirt and other unpleasant things.
Back to communication and their expressive language. What a young child is able to express to you is so limited, because to get the thoughts in their mind to come out of their mouth is an extremely complex, highly developed function. So, give your child a way to get your attention and send you into action other than a tantrum. And, don’t forget to teach family members and caregivers how to interpret the ways that your child is using to communicate their wants and needs. Smiles.
Parents have cautioned me, “We don’t want to separate my child from the autism.” “Autism is a part of my child.” “We love our child, autism and all.”
Of course you love your child ‘Autism and all!’ We love Sonny autism and all, but we have to know whether he’s banging his head because of a headache, or because of a sensory issue. Is he pressing his face against the door jamb because he needs to feel some pain? Or, is he in pain from a toothache or a sore in his mouth? That’s the difference, the ‘separation’ that I’m talking about.
The Centers for Disease Control & Prevention (CDC) https://www.cdc.gov/ncbddd/autism/treatment.html tells parents the following:
“It is also important to remember that children with Autism Spectrum Disorder (ASD) can get sick or injured just like children without ASD. Regular medical and dental exams should be part of a child’s treatment plan. Often it is hard to tell if a child’s behavior is related to the ASD or is caused by a ‘separate’ health condition.
For instance, head banging could be a symptom of the ASD, or it could be a sign that the child is having headaches. In those cases, a thorough physical exam is needed. Monitoring healthy development means NOT only paying attention to symptoms related to ASD, but also to the child’s physical and mental health, as well.”
< My Thoughts > “Often it is hard to tell if a child’s behavior is related to the ASD or is caused by a ‘separate’ health condition.”
A child can have Attention Deficit Hyperactivity Disorder, but NOT autism. So much of how the doctors and other professionals help you and your child is through ‘parent-reporting’. Then, there are medication side effects which also need close monitoring. You need to know… are there gastrointestinal (GI) problems because of the medication your child is taking, or possibly diet issues?
GI issues are common in children with autism. But, having GI issues does NOT indicate autism. You see the slippery slope we are on. ‘Know your child’ because, misinterpreting your child’s actions can lead the doctors and professionals down the wrong path, so to speak.
What is the child’s ‘normal’ and what is a concern that may be something else? When the literature refers to “separating the child from the autism,” this is NOT intended to “find a cure” or to suggest any other interpretation. The concern, instead, is because parents are often faced with pages of questionnaires, plus their child is faced with hours of assessment. My hope is to sort of ‘introduce’ you to the types of questions you may be asked during this ‘process’. Finding programs, therapies, treatments, interventions, and all the things that you will be subjected to are somewhat overwhelming. To clarify, my intention here is – to ‘know your child’ well enough to guide the process of finding ways to help your child lead a productive and independent life.
Here are some random thoughts about what to look for, or what you may be seeing… as we get started.
COMMUNICATION: How and what is your child communicating and how will you know? Developing some type of communication is an essential first step. Some parents may start with easy ‘baby’ sign language. Just so you know… very small infants can learn how to sign. Even if they make signs up, as Sonny does, it’s okay as long as you both know what it means.
Try to keep a positive approach which will help your child feel cherished and worthy of all the fuss. Remember too, that throughout childhood, kiddos hear and understand (receptive language) much, much more than we think that they do. They ‘pick up’ on your attitude and feelings. There are studies that show that sensitive children see people’s auras. Your neurotypical child may say, “The teacher doesn’t like me.” What he doesn’t tell you is that when he approaches her, her aura turns brown. Brown is a ‘yucky’ color, like dirt and other unpleasant things.
Back to communication and their expressive language. What a young child is able to express to you is so limited, because to get the thoughts in their mind to come out of their mouth is an extremely complex, highly developed function. So, give your child a way to get your attention and send you into action other than a tantrum. And, don’t forget to teach family members and caregivers how to interpret the ways that your child is using to communicate their wants and needs. Smiles.
Some parents know what their child wants because s/he drags them there and they scream until you figure it out. Its sort of like the old game of ‘Charades’. Okay… you’re getting warmer… almost there! Nope! Wrong way… getting cold!
< My Thoughts > “…know what their child wants.”
Sonny is ‘non-verbal’, or as some say ‘non-vocal’. Well, he doesn’t say any words but he really isn’t ‘non-vocal’ because when you say, “Show me what you want,” he may vocalize a noise. That noise can be a grunt to mean “Okay, I’ll show you with my eyes or touch.” Or, you may see a look of confusion because he thinks I know what he wants but I’m just being difficult.
And then when you say, “Sonny, is this what you want?” he may smile (That’s it!). Or, he may ‘grunt’ (Nope! Try again!”); as he is continuing to try to guide you towards something else.
Sometimes his response or sign is so subtle that you can miss it all together. And, so it goes. Then, just when you think you have all the clues… he gives you a whole set of new ones! Or, he may revert back to one we haven’t seen in years… just to see if we’re paying attention, maybe. Smiles.
Having some form of early communication is extremely important because it helps with the following:
So, it’s huge to be able to know what they want and what they don’t want. Later, you can move on to a more sophisticated communication program. Understand that the ‘BEHAVIOR’ you are seeing in your child is sometimes their ONLY form of COMMUNICATION. There is a detailed rundown in #3A MOTOR/COMMUNICATION, on the Menu Navigation sidebar.
< My Thoughts >
This may be a good place to talk about the difference between knowing when your child is throwing a tantrum and when s/he is having a sensory meltdown. Information on Anatomy of a Temper Tantrum and Anatomy of a Sensory Meltdown was retrieved from: https://blog.brainbalancecenters.com/2014/11/sensory-meltdown-vs-temper-tantrum
< My Thoughts > “…know what their child wants.”
Sonny is ‘non-verbal’, or as some say ‘non-vocal’. Well, he doesn’t say any words but he really isn’t ‘non-vocal’ because when you say, “Show me what you want,” he may vocalize a noise. That noise can be a grunt to mean “Okay, I’ll show you with my eyes or touch.” Or, you may see a look of confusion because he thinks I know what he wants but I’m just being difficult.
And then when you say, “Sonny, is this what you want?” he may smile (That’s it!). Or, he may ‘grunt’ (Nope! Try again!”); as he is continuing to try to guide you towards something else.
Sometimes his response or sign is so subtle that you can miss it all together. And, so it goes. Then, just when you think you have all the clues… he gives you a whole set of new ones! Or, he may revert back to one we haven’t seen in years… just to see if we’re paying attention, maybe. Smiles.
Having some form of early communication is extremely important because it helps with the following:
- Reduces frustration
- Lessens emotional outbursts
- Increases parent/child bonding
- Establishes self-esteem
- Starts to promote feelings of satisfaction and control
So, it’s huge to be able to know what they want and what they don’t want. Later, you can move on to a more sophisticated communication program. Understand that the ‘BEHAVIOR’ you are seeing in your child is sometimes their ONLY form of COMMUNICATION. There is a detailed rundown in #3A MOTOR/COMMUNICATION, on the Menu Navigation sidebar.
< My Thoughts >
This may be a good place to talk about the difference between knowing when your child is throwing a tantrum and when s/he is having a sensory meltdown. Information on Anatomy of a Temper Tantrum and Anatomy of a Sensory Meltdown was retrieved from: https://blog.brainbalancecenters.com/2014/11/sensory-meltdown-vs-temper-tantrum
Anatomy of a Temper Tantrum
The Mayo Clinic explains that temper tantrums frequently occur because young children are not equipped to express frustration in other ways. Even their limited vocabularies can make them feel frustrated to the point of throwing a ‘hissy’. Perhaps the child wants a toy but doesn't have the power to convince the parent. (Or, like the child in this picture... who sees something he wants in the store.) Perhaps s/he wants to stay at a friend's house, but the parent says that it's time to go. These events can turn into tantrums, especially when children are put in situations that can spark strong emotions. The behavior typically subsides once the child gets enough attention or, has his or her wants met.
The Mayo Clinic explains that temper tantrums frequently occur because young children are not equipped to express frustration in other ways. Even their limited vocabularies can make them feel frustrated to the point of throwing a ‘hissy’. Perhaps the child wants a toy but doesn't have the power to convince the parent. (Or, like the child in this picture... who sees something he wants in the store.) Perhaps s/he wants to stay at a friend's house, but the parent says that it's time to go. These events can turn into tantrums, especially when children are put in situations that can spark strong emotions. The behavior typically subsides once the child gets enough attention or, has his or her wants met.
Anatomy of a Sensory Meltdown ~
A sensory meltdown is very different from a temper tantrum. Sensory sensitivity to noise, lights, crowds, or touch can cause children and adults who have sensory processing disorders to become confused and frightened. They may startle and go into a ‘fight or flight’ response. The overloaded senses may lead to reactions that parents perceive as behavior problems when they are really clear signs of sensory overload.Sensory meltdowns are NOT social interactions like tantrums. The child rarely cares whether anyone pays him or her attention.
The meltdown is also NOT likely to disappear as soon as the ‘want’ is met. Instead, it will abate slowly after the offensive ‘sensory’ stimulus has been removed. You will know it’s NOT a tantrum because the child becomes aggressive, throws things, is inconsolable, bites, scratches stomps or runs, and possibly inflicts self-abusive behavior (poking eyes, pulling hair, head banging, flinging body against immovable objects).
< My Thoughts > “the child becomes aggressive…”
Sonny can be very excitable when experiencing his daily rollercoaster of emotions. We sometimes see aggressive and self-abusive behavior when he is over-stimulated on the ‘happy’ side. For example, if we are out driving and he spots a Mc Donald’s he may suddenly start banging his head against the car window. He doesn’t want to go to Mc Donald’s, he’s just overcome with emotion to see it; like bumping into a good friend at the mall. Or, sometimes during a scene in Toy Story when Barbie is telling Ken what to wear, Sonny just has to get into the action by kicking the wall with his feet, and rolling on the floor. The difference is that he is grinning from ear to ear during these emotional episodes and thoroughly enjoying himself.
A sensory meltdown is very different from a temper tantrum. Sensory sensitivity to noise, lights, crowds, or touch can cause children and adults who have sensory processing disorders to become confused and frightened. They may startle and go into a ‘fight or flight’ response. The overloaded senses may lead to reactions that parents perceive as behavior problems when they are really clear signs of sensory overload.Sensory meltdowns are NOT social interactions like tantrums. The child rarely cares whether anyone pays him or her attention.
The meltdown is also NOT likely to disappear as soon as the ‘want’ is met. Instead, it will abate slowly after the offensive ‘sensory’ stimulus has been removed. You will know it’s NOT a tantrum because the child becomes aggressive, throws things, is inconsolable, bites, scratches stomps or runs, and possibly inflicts self-abusive behavior (poking eyes, pulling hair, head banging, flinging body against immovable objects).
< My Thoughts > “the child becomes aggressive…”
Sonny can be very excitable when experiencing his daily rollercoaster of emotions. We sometimes see aggressive and self-abusive behavior when he is over-stimulated on the ‘happy’ side. For example, if we are out driving and he spots a Mc Donald’s he may suddenly start banging his head against the car window. He doesn’t want to go to Mc Donald’s, he’s just overcome with emotion to see it; like bumping into a good friend at the mall. Or, sometimes during a scene in Toy Story when Barbie is telling Ken what to wear, Sonny just has to get into the action by kicking the wall with his feet, and rolling on the floor. The difference is that he is grinning from ear to ear during these emotional episodes and thoroughly enjoying himself.
NEXT let’s look at Sensory Issues. If your child has ‘supersonic’ senses, air is likely to bother them. Sonny will sit in front of a fan for hours, his hair blowing in the wind. Yet, we can’t get Sonny out of the house on a windy day for love nor money. Which brings up the subject of ‘isolation’. It is very easy for a family or a child with hypersensitivity to stay isolated at home because it becomes impossible to get the child through the door and out of the house. I don’t have any answers for that. I just wanted you to be aware of how easy it is to become isolated. A lot of planning can go into leaving the house. I’ll include some Focused Extended Book Reviews to elaborate on this.
Meanwhile, ‘sensory issues’...
Bogdashina & Casanova (2016). Sensory deprivation studies show that sudden and nearly complete deprivation of stimulation through the senses can lead to autistic-like-behaviors (withdrawal, stereotyped movements, etc.). For example, behaviors such as rocking and rhythmic head banging, spinning objects or perimeter hugging (especially in large spaces), and the need to touch everything in a room before settling down, are typical for both autistic children and those with visual impairments.
Siri & Lyon ( 2014) tell us that children with sensory issues have difficulty accurately understanding their body’s messages and thus have difficulty making sense of their world. Sensory issues can often be mistaken for behavioral problems. To cope, they may start squirming and fidgeting and could even fall over. It’s impossible for the child with sensory sensibilities to stay seated (especially on the toilet where so many other things are going on). And yet another child with severe tactile defensiveness may be terrified to stand next to someone for fear of being touched by them.
Meanwhile, ‘sensory issues’...
Bogdashina & Casanova (2016). Sensory deprivation studies show that sudden and nearly complete deprivation of stimulation through the senses can lead to autistic-like-behaviors (withdrawal, stereotyped movements, etc.). For example, behaviors such as rocking and rhythmic head banging, spinning objects or perimeter hugging (especially in large spaces), and the need to touch everything in a room before settling down, are typical for both autistic children and those with visual impairments.
Siri & Lyon ( 2014) tell us that children with sensory issues have difficulty accurately understanding their body’s messages and thus have difficulty making sense of their world. Sensory issues can often be mistaken for behavioral problems. To cope, they may start squirming and fidgeting and could even fall over. It’s impossible for the child with sensory sensibilities to stay seated (especially on the toilet where so many other things are going on). And yet another child with severe tactile defensiveness may be terrified to stand next to someone for fear of being touched by them.
Sorry this is a little fuzzy (maybe on purpose?), but here’s what it says…
Our sensory perceptions overwhelm us.
Imagine you were in a foreign & noisy city at night, not really
Understanding the language spoken, recognizing only a
Few words, but NOT really comprehending situations
Taking place around you, wanting to express a need for help
But not being able.
This experience may begin to help you relate to what
A child with Autism feels on an ordinary day.
=========
Continuing on with Sensory Issues, the following information was retrieved from: http://senseablekids.com/sensInt.html.
Other examples which have been reported are when the child may NOT be able to tolerate smells from the lunch room, or has an intolerance for noise such as… that of other children, fireworks, or vacuum cleaners. Then there is the child who suddenly may NOT be able to move about without becoming afraid or feeling nauseous. Many children are NOT able to wear certain clothes that are for some reason, intolerable. Then there’s the child who suddenly starts craving the sensation of bumping and crashing into things and people. Or, perhaps the opposite is observed where the child does not seem cuddly or doesn’t recognize when they are hurt. They don’t seem to hear auditory information, or don’t respond to their name.
Then, there is the child who will not swing his or her arms back and forth from right to left; known as an ‘inability to cross the body midline’ when asked to do so. This often translates to observing to the child having difficulty with ‘directionality’. There is an inability in knowing where their body is in space. As well, they could be having difficulty ‘alternating limb movements’, thus seemingly having a clumsy walk.
Included in difficulty with ‘directionality’ are poor eye movements; such as having difficulty with directing their eyes. Also, there may be the unusual fear for certain positions or movement like being on their tummies, moving backwards or going on stairs or escalators. There are children who also have difficulty executing activities the daily living skills of self-dressing. They are not able to button or zip clothes, nor can they make sense of right & left shoes. Often one may hear these types of responses described as having an ‘over-reactive’ or ‘under-reactive’ sensory system.
< My Thoughts > “Sensory Integration Therapy…”
There is more information about programs and therapies in the post titled What To Do While You Wait? #3 PRIORITIZE WANTS & NEEDS or #4 LOOK INTO PROGRAMS. Also, if a child is already in school, the Occupational Therapist is usually assigned to work with a student’s sensory issues; as part of the student's Individualized Education Program (IEP).
References:
Bogdashina, O. & Casanova, M. (2016). Sensory Perceptual Issues in Autism & Asperger Syndrome, Second Edition, London; Philadelphia: Jessica Kingsley Publishers.
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism; 4th Edition: Skyhorse Publishing, N.Y., N.Y.
=======
End of #5A Know Your Child: GETTING STARTED
NEXT will be… #5B: FOCUS ON THE WHOLE CHILD… Under: What to do While You Wait… Know Your Child.
NOTE: Focused Extended Book Reviews will be included soon, for additional real-world knowledge of this topic.
Our sensory perceptions overwhelm us.
Imagine you were in a foreign & noisy city at night, not really
Understanding the language spoken, recognizing only a
Few words, but NOT really comprehending situations
Taking place around you, wanting to express a need for help
But not being able.
This experience may begin to help you relate to what
A child with Autism feels on an ordinary day.
=========
Continuing on with Sensory Issues, the following information was retrieved from: http://senseablekids.com/sensInt.html.
Other examples which have been reported are when the child may NOT be able to tolerate smells from the lunch room, or has an intolerance for noise such as… that of other children, fireworks, or vacuum cleaners. Then there is the child who suddenly may NOT be able to move about without becoming afraid or feeling nauseous. Many children are NOT able to wear certain clothes that are for some reason, intolerable. Then there’s the child who suddenly starts craving the sensation of bumping and crashing into things and people. Or, perhaps the opposite is observed where the child does not seem cuddly or doesn’t recognize when they are hurt. They don’t seem to hear auditory information, or don’t respond to their name.
Then, there is the child who will not swing his or her arms back and forth from right to left; known as an ‘inability to cross the body midline’ when asked to do so. This often translates to observing to the child having difficulty with ‘directionality’. There is an inability in knowing where their body is in space. As well, they could be having difficulty ‘alternating limb movements’, thus seemingly having a clumsy walk.
Included in difficulty with ‘directionality’ are poor eye movements; such as having difficulty with directing their eyes. Also, there may be the unusual fear for certain positions or movement like being on their tummies, moving backwards or going on stairs or escalators. There are children who also have difficulty executing activities the daily living skills of self-dressing. They are not able to button or zip clothes, nor can they make sense of right & left shoes. Often one may hear these types of responses described as having an ‘over-reactive’ or ‘under-reactive’ sensory system.
< My Thoughts > “Sensory Integration Therapy…”
There is more information about programs and therapies in the post titled What To Do While You Wait? #3 PRIORITIZE WANTS & NEEDS or #4 LOOK INTO PROGRAMS. Also, if a child is already in school, the Occupational Therapist is usually assigned to work with a student’s sensory issues; as part of the student's Individualized Education Program (IEP).
References:
Bogdashina, O. & Casanova, M. (2016). Sensory Perceptual Issues in Autism & Asperger Syndrome, Second Edition, London; Philadelphia: Jessica Kingsley Publishers.
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism; 4th Edition: Skyhorse Publishing, N.Y., N.Y.
=======
End of #5A Know Your Child: GETTING STARTED
NEXT will be… #5B: FOCUS ON THE WHOLE CHILD… Under: What to do While You Wait… Know Your Child.
NOTE: Focused Extended Book Reviews will be included soon, for additional real-world knowledge of this topic.
RSS Feed