#5  "What to do While You Wait, Investigate!" – Know Your Child, with < My Thoughts > by Sara Luker  Try New Things (non-invasive)
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​ From GALLERY of BOOKS on Autism; Focused excerpts examples of "What to do While You Wait" concerning – Know Your Child & Prioritize Concerns (stories) about ~
Cognition & Learning, Communication & Social, Temperament & Sensory, Motor Skills & Play equipment, Daily Living Skills & Safety.
 
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 #1 Prioritize Concerns 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, in Website MENU: MENU #5 Know Your Child; #5A Getting Started, #5B Temperament, #5C Cognitive & Learning, #5D Resources & Insurance, #5E Law & IEPs. 
 
Note: SEE DISCLAIMER BELOW 
 
Here is a ‘peek’ into the website’s 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 >       Try New Things (non-invasive)
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Sometimes, we can try things with a different twist. When your child is having a difficult time, put on a pair of silly glasses; like the ones left over from New Years Eve. Or, a child’s hat with their favorite character. Just to ‘lighten’ up your possibly intense mood, because at any age a person with autism seems to know when we are struggling with something. This may be perceived as a ‘danger’ to them. Staying flexible, trying a new task at a later time, or when they seem to be more receptive can work wonders. Smiles. 

Rules (for David) by Cynthia Lord, eBook 2003 Edition;
an Excerpt from Extended Review with < My Thoughts > by Sara Luker

Note: (8% indicates the eReader book location, instead of page reference numbers).
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8%   I write down all David’s rules, so my ‘someday-he’ll-wake-up-brother’ will know how the world works.
 
< My Thoughts >       “…so my someday-he’ll-wake-up-a-regular-brother…” 
 
Some say that persons with autism are “the new normal” because many have normal intelligence, but lack the necessary social and emotional knowledge. They are finding their place in society, especially in the world of technology. Because in the world of technology, you make your own rules.

Autism by Hand by Lorca Damon, eBook 2011 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker
 
Note: (4% indicates the eReader book location, instead of page reference numbers).
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4%          Toolbox. Here are the things that I kept on hand for working with Carrie. Some of these might be godsends for you, some of them might be the stupidest thing you’ll ever try. Nothing here costs more than $20 so try it if you think your child will respond.
 
Mirrored wrap-around sunglasses, the bigger and the cheaper the better. You might want to get a few pairs of these glasses because some of them are bound to get broken in all the play. The point of the glasses is actually very simple. When you put them on they look kind of weird, which attracts you child’s attention, but when he looks at your glasses he will see himself, which is kind of intriguing. More importantly, the glasses are blocking out a large portion of the overwhelming information that is provided by the human face.
 
When my glasses were not handy, I have even just planted myself in front of my daughter and talked to her with my eyes closed, just so she wouldn’t be so overpowered by the intensity that is the human eye.
 
Several pairs of white gloves (winter kind, hardware store kind, jazz hands kind, doesn’t matter, so long as they’re white so you can write on them and light-weight enough that you won’t feel stupid wearing them everywhere you go for the rest of your life. I’m kidding. No, I’m not.) the title of the book came from the use of my hand as a visual teaching aid to my daughter.
 
< My Thoughts >                “… talk to the hand…”
 
When Sonny was younger, he would hold his hand up in front of his face and babble away at it. So, talking to the gloved hand would be perfect for him. Smiles.

Autism Triple Twist: Survival Stories of Parents, Triplets and Autism, by James E. Potvin; eBook 2013 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (28% indicates the eReader book location, instead of page reference numbers).
 
28%     She loved routines and became upset if the anticipated routine was altered. Andrea was autistic; she was just at a different spot of the autism spectrum than Sarah.
 
Rachael, the middle triplet was still normal. At this point, we realized that having one child with autism was expensive. Having two children with autism requires serious financial planning.

Autism insurance was not available to us until the girls were 14. Here is a link to see if your state has autism health insurance available: http://www.ncsl.ort/issues-research/health/autism-and-insurance-coverage-state-laws.aspx.

There are numerous state programs designed to help families with autism. Look for autism centers or programs with local colleges and universities. Private organizations may also have programs available.

< My Thoughts >      “Autism insurance and private organizations with programs available to help families with autism.” 

In the current political climate just trying to have insurance coverage for the massive amount of testing, evaluation, diagnosis, medication, therapies, and intervention programs is daunting for the parents. Sonny’s medications alone cost thousands of dollars, monthly. Without them he has increased seizure activity and a very limited lifestyle. Without the help of insurance, financially we would not be able to provide for his needs.

Hello, My Name is Max and I Have Autism by Max Miller, eBook 2014 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker
 
Note: (48% indicates the eReader book location, instead of page reference numbers).

48%   When I learned about how I have autism, I cried while I was in the shower.  I wished the autism would die. 
 
49%   My mom heard me and she handed me the art set that my Uncle Dean gave me for my birthday.  She told me to draw about what it is like to have autism. The drawing helped me feel better. 
 
< My Thoughts >       “The drawing helped me feel better.”
 
Constantly looking for opportunities for children to express themselves in ways that society can embrace is a goal of many parents and teachers. Drawing filled a need for Max, for some it’s music or having a pet.

Someone I’m With Has Autism, by Carrie Cariello & Jordan Capell, eBook 2015 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
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Note: (9% indicates the eReader book location, instead of page reference numbers).

9%       For no reason at all I felt a lump in my throat. I didn’t know why. Kids the world over present their parents with homemade gifts – ornaments and candle holders and picture frames – sometimes for birthdays or holidays, and sometimes just because.
The following afternoon he flew off the bus with a package wrapped in tissue paper.

11%     And then excitement, anticipation, glee – my normally transparent son had kept a secret and surprised his father with a handmade gift. 

< My Thoughts >       “…handmade gift wrapped in tissue paper.”
Something you might try with your child is to let them experience gift buying, wrapping, and giving.
From: http://www.snagglebox.com/article/autism-holidays-gifts
Gift giving can cause stress with children and adults with autism, putting them on overload.
 
Why it can be hard. First there’s the sensory overload. Sensations of rustling and tearing wrapping paper can be really unpleasant or super exciting.
 
Frustration – wrapping and unwrapping requires a lot of fine motor skills and coordination that they may not have. Then there’s the ‘not yet assembled’ or ‘too complex’ gifts. There’s the struggling with waiting and overriding impulse control.
 
Tension and uncertainty – there’s the tension and confusion of everything going on at once. Not sure of what is happening causes great anxiety.
 
Social pressure – all the social rules to navigate when the spotlight is on you. Saying please and thank you in the right way to the right person.
 
No interest in the gift – when those with autism have a strong preference for their favorite things they don’t accept ‘new’ stuff. Sometimes the wrapping paper or the box is more exciting and more appreciated than the gift itself.
 
Ways you can help:
 
Take your time – spread the gift giving (or buying) out over a day or two. Take a break in between to play with beloved favorites. (Not giving up one for the other.)
 
Reduce frustration – Wrap with clear wrapping paper so they can see what’s inside. And, preassemble toys… complete with batteries. Have them go in other room to open the gift away from the other presents.
 
Add structure and predictability – visual chart, social story, or set a time limit to the activity.
 
Reduce social pressure – practice role playing and script responses for opening and for giving gifts.
 
Be flexible – it doesn’t matter if the kid likes the box more than the toy inside. The goal is to celebrate, share and enjoy.

Autism: Why I Love Kids with Autism by Doris Duan-Young, eBook 2014 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker

Note: (9% indicates the eReader book location, instead of page reference numbers).

9%       If parents aren’t aware of the core values that will give them the best success with their child, any tactics and strategies they try probably won’t be effective long-term, if at all. And if they aren’t even aware of basic strategies and tactics, they will wind up frustrated, overwhelmed, exhausted and often angry.
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Angry at their child, the world, society, God, and most of all, themselves.
 
That’s why when I help parents of children with autism. I always begin with shaping their values. Why? Because values are the foundation from which to build long-term, lasting results.
 
The best way I found to share these concepts is through stories.
                                                                                                                      
< My Thoughts >       " I always begin with shaping their values.”
 
“Shaping behavior’ is a technique that came from behaviorism, a field of psychology established by B.F. Skinner based on the relationship of behaviors and their reinforcement of preferred items such as food or praise.” Retrieved from www.thoughtco.com/shaping-a-teaching-technique.
 
Bodfish (2004) tells us that there is ‘empirical’ support for interventions which include three pivotal parts – (1)teaching & reinforcing alternative behaviors (2) environmental arrangement or structuring (3) shaping or graded change.
 
‘Shaping behavior’ is different than managing ‘misbehavior’. Instead, ‘shaping behavior’ is structuring activities to reflect a desired outcome. Some use ‘social stories’ or ‘video modeling’. (www.DorisDuanYoung.com/AutismApps ). 
 
“Social stories are simple stories (a created one-page, age-appropriate-reading-level story with pictures), that helps students learn about appropriate social behavior.” You may write your own stories or find them ready-made online. Retrieved from: http://www.teachhub.com/social-stories-autistic-students.
 
“Video modeling is a visual teaching method that occurs by watching a video of someone modeling a targeted behavior or skill and then imitating the behavior/skill watched.” Retrieved online from - http://www.watchmelearn.com/video-modeling/what-is-video-modeling

The Aspie Parent, the First Two Years A Collection of Posts from the Aspie Parent Blog
by Liz Cademy, eBook Edition 2013 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker

Note: (64% indicates the eReader book location, instead of page reference numbers).
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64%     < From Liz’s blog >  Here’s a question Cathy asked: “I’m curious about RTM (Remember the Milk), as my 10th grader really struggles with organization and remembering to turn in his work.
 
65%     He currently uses Google Calendar RTM. The RTM webpage says RTM works with Google Calendar. Can you explain the Benefits of using RTM…
 
I’ll try to explain this quickly. If you look at the things you need to do, you can divide them into tasks and events.
 
Events are linked to a specific time/date, such as Math Class or Daniel’s Party. Tasks may have deadlines, but you can do them at any time before (maybe after) the deadline, such as Chapter 8 History Homework, due Friday.
 
Google Calendar is great for events, Remember the Milk (RTM) is designed for tasks. I like keeping the two separate, so I use both programs.
 
< My Thoughts >        “I use both programs.”
 
RTM is a visual part of the calendar seen as a sidebar portion on the screen. Liz’s book gives names or books to read on how to use both.

Curious Incident of the Dog in the Night-time, by Mark Haddon; eBook 2003 Edition. An Excerpt from Extended Book Review, with < My Thoughts  > by Sara Luker

Note: (4% indicates the eReader book location, instead of page reference numbers).
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4%       The police arrived. I like the police. They have uniforms and numbers and you know what they are meant to be doing. There was a policewoman and a policeman.

The police woman put her arms round Mrs. Shears and led her back toward the house. I lifted my head off the grass.

< My Thoughts >       “I like the police, they have uniforms and numbers.”

​Persons with autism may be predisposed to seemingly criminal behaviors. Thus, children with tactile, fight or flight, PTSD, or other sensory issues can react quickly and/or defensively when touched or when someone comes within close proximity. Without adequate police training, anyone with this ‘invisible disability’ may find themselves in a dangerous situation.
 
Wright (2019) says many people with autism can drive. But when pulled over in traffic, they may be slow to answer, agitated, unsteady on their feet, or slurring their words, not looking you in the eye. Officers learn that if they don’t smell alcohol, it’s okay to ask directly, “Do you have autism? It can save a lot of misunderstanding.”
 
Police today are being trained to look for signs of Autism. Also, they check for bracelets or tags which may give necessary information about the person’s serious medical condition. Many children with autism also have epilepsy and sensory issues. Heat, sound and bright lights can trigger seizures, Post Traumatic Stress Disorder, and panic attacks.
 
Also, persons with Autism may exhibit unusual behaviors and often try to run, may spin, rock, run around and may seem to be in pain. Some laugh, hum, sing, remove clothing, or refuse to be touched. Often times, both children and adults with autism do not comprehend pain or danger. Speaking to them in clear one or two word, easy to process commands may work best in this situation. Make certain to pass any information on to those who may be transporting the person to another place.

​All Because of Henry: My Story of Struggle & Triumph with Two Autistic Children by Nuala Gardner, eBook 2013 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker

Note: (1% indicates the eReader book location, instead of page reference numbers).

1%       Henry – all four legs and tail – our beautiful, noble golden retriever. Everyone who knew him agreed. He was to become Dale’s first real friend and he was the perfect gentleman.
 
As you have read in my first book – A Friend Like Henry, this was no ordinary dog. He did the extraordinary; he gave me hope when I had none. It was Henry who freed my tormented son and it was Henry who would throw us both the lifeline we needed.
 
Dale’s autism was so severe that family life was extremely difficult. We simply didn’t know what to do. How to get through to our son and give him the help he so badly needed.
 
Then came Henry. I was able to see Dale’s future. It would be confident, fully productive, a professional member of society. Would that it were to be so simple.
 
“Mum, due to Henry I am not scared any more of being an adult. I have decided that for the rest of my life I am never going to let my amazing dog down, so that he will be proud of me, as I will always be of him.”

Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes, eBook 2014 Edition; an Excerpt from Extended Review with < My Thoughts > by Sara Luker

Note: (10% indicates the eReader book location, instead of page reference numbers).
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10%     Change in the Weather: Is a storm coming?
 
12%     There may be patterns to the storms, yet weather is inherently unpredictable, and guessing how a storm will play out in our valley is kind of the same process as guessing how my son will manage transitions.
 
Any transition, be it from play to getting ready for bed, or travel 500 miles to visit relatives, can go smoothly or can be incredibly difficult. We can guess, based on past experience, and plan for contingencies. Like planning for a storm…
 
13%     There are basic steps we take:
 
1.  We tell him or remind him of an impending transition. 
2.  We get him to imagine the transition several steps out, to help his brain “shift gears.” 
3.  We give him choices related to the transition… 
4.  We attempt to generate buy-in for the transition, by reminding him or getting him to recognize the positives that come from the transition (Ex. Going swimming in parents pool).

< My Thoughts >                   “…transition…”
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Transitions are very tricky for many children, but more so for children with autism. Knowing how the child learns can help with developing an understanding of how transitions work. Visual supports in the form of posters, phone apps, and/or timers can help. It’s easier to start with little transitions, then working up to larger ones. Being consistent, patient, and flexible is a way to start. 

How Can I Talk If My Lips Don’t Move?: Inside My Autistic Mind
by Tito Rajarshi Mukhopadhyay, eBook 2011 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (6% indicates the eReader book location, instead of page reference numbers).

6%       There are times in everyone’s life when there is a need to tell a story.  It can be any story. 
 
7%       I grew my stories from this and that, now and then, here or there, to compose this book.
 
Right now, I am thinking about a mirror. It was a mirror in one of the rooms upstairs, in the house where I spend my second and third years of life. The mirror in front of a window, and it reflected the rocks of those sunbaked hills outside the window.
 
< My Thoughts >       “Right now, I am thinking about a mirror.” 
 
Sonny spends a lot of time with mirrors and glass reflections. He coos to them and seems to look beyond his own reflection. Sometimes I think he is looking at the reflection of the ceiling fans. We put a full-length mirror on his closet door and a small framed mirror sitting on the floor where he can move it around if he wants to.

I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism
by Jeni Decker. eBook 2011 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker

Note: (6% indicates the eReader book location, instead of page reference numbers).

6%       At last, I was finally able to sit in the rocking chair with Jaxson and make nice. Usually, when he realized he isn’t going to get his way, there is a hurricane of dysfunctional behavior followed by a self-imposed time out, then him hugging me and crying, eventually leading to, “Better, Ruby?” “Yes Max, all better,”
 
He calls me Ruby and I call him Max, something that started when I began mimicking the voice of the cartoon character on Max and Ruby, one of his favorite shows.
 
“Good job, Ruby.” Jaxson smiled and used his little fingers to push the downturned corners of my mouth up into a smile.
 
Autistic people often have a problem matching a facial expression with a corresponding emotion. Jake regularly had to consult the Chart of Expressions on his special needs classroom wall in order to know what someone he was talking to might be feeling inside.

< My Thoughts >          "...corresponding emotion."

Sometimes just using phrases from a favorite DVD scene can work. When Sonny, a Toy Story fan, ignores my direction… I may try repeating the direction, then say – “I have a laser, and I will use it!” This brings about a snort of laughter, but he usually complies. Smiles.
 
Grossman & Tager-Flusberg (2012), tell us that there is some correlation between the “degree of social impairment, and the ability to determine what dynamic facial expressions mean.” Their pilot study showed that participants found it most difficult to differentiate between “the properties of surprise and those of a happy expression.” Participants learned that teen with their mouths in an open position were in a state of high intensity of anger, sadness, and surprise. While teens with closed mouths were experiencing an emotion of lesser intensity.

REFERENCES from other sources –

Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet?; Mental Retardation & Developmental Disabilities Research Reviews; Chapel Hill, NC V10:318-326.
 
Grossman, R., Tager-Flusberg, H. (2012). “Who Said That?” Matching of Low & High Intensity Emotional Prosody to Facial Expressions by Adolescents with ASD; Journal of Autism Developmental Disorders; 42:2546-2557.

Wright, D. (2019). First responders learn how to recognize Autism Spectrum Disorder; Retrieved online from – https://www.wtrf.com/news/local-news/first-responders-learn-how-to-recognize-autism-spectrum-disorder/
 
DISCLAIMER

The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of this material indicates your acceptance of this disclaimer.
 
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.

Furthermore, understand and agree that this material is not intended as a substitute for consultations with licensed healthcare professionals. Nothing in this material is expected to diagnose, treat, imply cure, or prevent any condition, disorder, or disease.  Any errors or omissions in the available subject matter, Units, Chapters, References, Charts, Tables, Appendices, LINKS, and/or other downloadable or non-downloadable materials are unintentional. Revisions in the material may be subject to change without notice.
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​Blog #5D Resources & Insurance with < My Thoughts > by Sara Luker
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< My Thoughts > LOOK for RESOURCES in your area through personal contact or by searching online. My search was… Autism Resources & Services near me. Here is what came up (in alphabetical order) …

• Autism Diagnosis Specialists
• Autism Support Groups
• Colleges and Hospitals with Autism programs
• Community Autism Programs
• Community Autism Service Providers
• Easter Seals Autism Program & Phone list
• Parent’s Guide to Autism
• Physicians specializing in Autism
• Respite Care for Autism
• Schools with Autism Programs
• Therapists Specializing in Autism

There are many more listings, I’m certain and of course there are many Autism Organizations, statewide and nationwide. 

Autism Insurance...

< My Thoughts > You may want to check all of your insurance for evidence of coverage, benefits, & limitations; deductible, co-pay, co-insurance, and network of providers available to you. This is in addition to checking on what is possibly free from your city, state, county, and government services.

• Drug coverage
• Urgent care
• Primary care
• Dental/Vision
• Lab Services
• Medical Equipment (if needed)  Note: When Sonny needed a Nebulizer, we found it was cheaper to buy one outright from a medical supply store than to contract to rent one through Medicaid. Just saying…give yourself the opportunity to have options.
• Surgery
• Chiropractor
• Home Health Care
• Therapists… Speech, Occupational, other.

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< My Thoughts >  Here are some websites found after searching for: Apply for Financial Resources/benefits & Research Programs for the U.S. Government -
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Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.
 
Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. Contact your local Social Security Office to apply.
 
Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.
 
Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.
 
Access A Service Coordinator/Case Manager - Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early Intervention and State Developmental Disabilities Offices.

Caregiver Program Assistance – Caregiver Eligibility Check – Are you interested in applying for VA’s Comprehensive Assistance for Family Caregivers Program? Answer a few questions to find out if you meet the criteria for VA’s new program for certain Veterans needing the assistance of a garegiver. Based on your answers to the questions, you will be guided to complete the appropriate online application for VA benefits. Retrieved from – https://va.gov/healthbenefits/resources/Caregiver_Eligibility_Check.asp

​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.