​BLOG #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.

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 understand 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.”

​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.

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)?

#5B Know Your Child: TEMPERAMENT with < My Thoughts > by Sara Luker

Temperament develops over one’s life span, reinforced by one’s experiences. One temperament scale shows a person can be seen by others as being:

• Cooperative
• Excitable
• Risk taker
• Defiant confrontational
• Stressed

So how does a parent narrow all this down? Well, there are several assessments out there; mainly it’s a matter of relying on observation and gut feelings about things.

< My Thoughts >       And, then there are ‘degrees’ of each of these characteristics. When working with your child, assume more of the role of ‘coach’, rather than parent or teacher.
If you assume the role of ‘coach’ then perhaps you can more readily match the child’s ‘needs, & preferences, & strengths’ with the tasks at hand. In other words, try distancing yourself as parent; acting more as if you would interact with someone else’s child if you were coaching them on a sports team.

​Praise the good things and redirect or guide the undesirable ones in a more productive, more positive way. Added to that, try to observe your child in a more objective way. Use your words and actions to support, inspire, and renew your child’s motivation as you would someone else’s child; leaving the ‘parental authority figure’ approach behind. Smiles. 

Knowing a child’s temperament can also help you keep them motivated. Rivers & Stoneman (2008), in a study of 50 families found that ‘temperament’ is a relatively stable individual difference or characteristic. They say it is rooted in the child’s biology and influenced as the child develops, by the environment and their maturity.

For example, Impulsivity – has a problem with negative emotions and self-control. Then there is Giving up versus Conscientiousness  – staying with it even if the the child perceives the task or problem as difficult. Knowing this helps with ‘differential parenting.’
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The study also revealed ‘how’ brothers and sisters observed and interacted with their ASD sibling. They characterized their ASD sibling by saying that s/he had lower activity levels, lower emotional intensity, and was becoming more temperamentally difficult with time. The authors noted too that there seemed to be a gender distinction in the siblings, between how girls (slightly more empathetic approach) responded to the situation, compared to boys (slightly less empathetic approach).

Siblings noted that when parents acted differently towards their typically developing children, it helped the siblings’ progress. They understood the ‘parental difference’ and did not try to match their ASD sibling’s behavior by regressing in order to get their parents’ attention.

Important to know too, is that the typically developing siblings in the study expressed their overall ‘happiness’ at being included in helping their parents understand their need to feel included. They wanted to be part of predicting and dealing with the ASD sibling’s behavior. “When my parents include me, I feel like an ‘insider’, not an ‘outsider’ to what is going on with my parent’s attention.”

Reference:

​Rivers, J., & Stoneman, Z. (2008). Child Temperaments, Differential Parenting, and the Sibling Relationships of Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V38: p1740-1750.

More about TEMPERAMENT –

< My Thoughts >       Matching your child’s needs, preferences, and strengths to a program, therapy, or school placement is one place to start. Combining information from multiple sources you can begin to identify what will work for you and what may work for your child. In an attempt to ‘narrow’ things down, is your child a ‘morning’ person or an ‘afternoon’ or ‘evening’ person?

Both Sonny and I are ‘later in the day’ people. Dad thank goodness is a ‘morning’ person. He hits the floor running. What do you and your child enjoy doing together? Some mornings, after meds and all the toys are ‘lined-up’, Sonny may bring me a coloring book. He used to attempt to color, but after a severe seizure, that skill seemed to disappear.

#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.

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:

• 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.

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.

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.

#5 Know Your Child   with < My Thoughts > by Sara Luker            Under… “What to do While You Wait”

INTRODUCTION:
Knowing your child and knowing your child’s Autism.
Knowing the difference may help you move forward.
 
Loving your children... keeping them safe...
& finding out how they learn is part of what parenting is all about!

Each child learns differently & each parent 'parents' differently.
This website hopefully becomes a continuing source of information for you. 

When a child has difficulty learning about themselves & their world...
or, developing slowly it isn't always AUTISM. 

And, if it is AUTISM... know that it's NO ONE'S fault.
The exact cause of AUTISM is yet unknown.

​What is known is that it is a NEUROLOGICAL difference in the child's brain.
This difference is possibly caused by an interaction of genes & environment.

The child's development pattern can begin to look different from other children their same age.
This difference can be from mild to severe. From the passive 'quiet' child to the 'wild' child.

Along with knowing your child, you will begin to know yourself.
Getting help is the key. Early intervention works!

< My Thoughts >       …”Early intervention works!”
 
Programs, therapies and interventions are costly and can have both positive and negative effects. That’s why it is so important to ‘know your child’ and ‘know your child’s autism’ can be so critical. When treatments are successful, everything changes. Positive-negative side effects for young children can be that they become much more aware of what they want and how to get it. Then, when you don’t understand what they want, they get upset and tantrum or pinch to get your attention.
 
When a child becomes more ‘aware’ and begins to have a heightened understanding of how things around them work; for instance doors and windows. And where the neighborhood candy store is, then successful ‘escape’ behaviors may start to occur. After years of building his skills and confidence, Ken Siri’s (2014) autistic son Alex ran off in downtown Manhattan. He was finally found after two frantic hours of searching. He had made it out of the house, through traffic, to his favorite candy store. Smiles.
​
Siri & Lyons (2014) say that as researchers begin to understand enough about each individual’s autism, they can develop a particular treatment for that particular dysfunction. When doctors can do a ‘biochemical’ profile they can help to understand the child’s symptoms. There is talk about how allergies can cause a ‘cascade’ of events which may look like a behavior. The presence of chronic gastrointestinal (GI) symptoms in children with ASD can cause diseases of the intestinal track. This demands medical attention, evaluation, and changes which may include treating diet, nutrition. When treated, unwanted behaviors may disappear. Also, some say that understanding how various environmental toxins can cause stress or upset hormone levels in the thyroid, in a child with autism, is necessary to improve overall health.

In 2015 Alice Park, Senior Science journalist for TIME Magazine, published an interesting article titled – Researchers Zero In on the Best Way to Diagnose Autism. She tells us that traditionally, autism is diagnosed with behavioral tests that assess whether kids are meeting developmental milestones, such as talking, interacting with their parents and siblings, and learning to give and take in social situations. But that in recent years, scientists have been working on other ways to detect and potentially diagnose autism, such as having identified more than 100 genes connected with a higher risk of developing autism.