UNIT 5 What to Do While You Wait?
INTRODUCTION
CHAPTER 1 – Getting to Know Your Child & Yourself & Your Concerns
CHAPTER 2 – Determining Social & Personal Awareness
CHAPTER 3 – Working on Daily Living Skills aka Getting Started with Concerns
CHAPTER 4 – Understanding a Child’s Thinking
PART 1 Learning Strengths
PART 2 Learning Weaknesses
UNIT 5 – REFERENCES
UNIT 5 – APPENDIX A Transition Guide
PLEASE READ DISCLAIMER –
INTRODUCTION
CHAPTER 1 – Getting to Know Your Child & Yourself & Your Concerns
CHAPTER 2 – Determining Social & Personal Awareness
CHAPTER 3 – Working on Daily Living Skills aka Getting Started with Concerns
CHAPTER 4 – Understanding a Child’s Thinking
PART 1 Learning Strengths
PART 2 Learning Weaknesses
UNIT 5 – REFERENCES
UNIT 5 – APPENDIX A Transition Guide
PLEASE READ DISCLAIMER –
UNIT 5 – What To Do While You Wait?
CHAPTER 1 – Getting to Know Your Child & Yourself & Your Concerns
INTRODUCTION –
What to do while you wait? Diagnosing autism spectrum disorder (ASD) can be difficult and time consuming. No blood test exists to diagnose ASD. Instead, doctors must look at the child’s developmental history and their observable behavior to arrive at a clinical impression and a long-term or short-term diagnosis, and suggested next step. Part of accomplishing this is by asking parents many ‘observational’ questions.
A professional diagnosis considers scores from standardized diagnostic instruments such as the Autism Diagnostic Observation Schedule (ADOS) completed by clinicians, and the Autism Diagnostic Interview-Review (ADI-R) which is a questionnaire completed by parents.
The ADI-R will depend heavily upon your answers as parents. When you can be authentic and candid with your answers, the picture of your child’s behaviors, social-communication, and environmental (sensory) responses will begin to emerge. Eventually, by knowing yourself, knowing your child and your child’s autism your path forward will become a little clearer.
< My Thoughts > “…become a little clearer.”
There may be a huge separation between who the child actually ‘is’ and the child that parents ‘want’ him/her to be. A child’s brain anatomy, genetics, and environmental setting determine who s/he will become. Once there is a diagnosis, many people will join you on your child’s developmental journey, adding their own diagnostic plan to assist your child.
Soto, T., Kiss, G., et al. (2016) say that once clinicians have identified, a) two social-communication symptoms, and b) at least one repetitive and restrictive behavior, as well as c) clear evidence of impairment, appropriately designed services will be tailored to improve and optimize the child’s development trajectory.
Grodberg, D., Weinger, P., et al. (2013) give us information about an Autism Mental Status Exam (AMSE), which was developed to add information and data which may be considered a more ‘observational’ part of the diagnostic process. This brief diagnostic tool, along with the ADOS and the ADI-R, is meant to quantify the clinicians’ ASD diagnosis.
< My Thoughts > “…more ‘observational’…”
The caveat here, which has probably been mentioned before, is that information derived from observations may be faulty, due to our ‘human’ nature. Assessment results may be skewed because the person answering the ‘observational question’ may be looking at a behavior either in an ‘objective’ or ‘subjective’ way. Meaning that sometimes we see what we ‘expect’ to see or ‘want’ to see, depending on our focus at the time.
Mattila, M., Jussila, K., et al. (2009) make known an additional instrument, the Autism Spectrum Screening Questionnaire (ASSQ). She says the purpose of their study was to learn the association between the parents’ rating score, the teachers’ rating score, and this test’s rating scores. They were hoping to correct any skewed results, in order to correlate scores between multiple informants. Thus, hoping to have a more factual verdict on which to base their decisions.
Hollocks, M., Casson, R., et al. (2019). have another screening assessment, the Social Communication Questionnaire (SCQ). They say that this screening tool is an acceptable instrument but itt depends greatly on the version used, the age of the participant, the accuracy of the parent and the teacher completing their part of the questionnaire. Added challenges mentioned were that the recommended services may depend on what other underlying mental health issues need to be considered.
< My Thoughts > “…accuracy of the parent…”
Try to track and keep some kind of data system which helps you with accuracy. Some parents find it easier to keep personal journals, while others use a calendar or file, or even an empty drawer or box to accumulate notes, appointments, etc.; just remember to date everything.
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 doing something to help your child. To feel that you are beginning to learn what to expect, such as the above assessments you may be presented with. This can become an important time of clarifying what concerns you and your family the most about your child's behavior, or development.
Make your ‘waiting time’ a time of clarification as to what you are seeing with your child’s behaviors. Clarification can help you give your most accurate and authentic answers to the many questionnaire questions you will be asked to complete. A favorite question people will ask of you is “When did you first notice this?” Why did ‘it’ become a concern?” Your accuracy in answering these things will lead to the kinds of services that you child will be offered, or that you will want to advocate for. Stay aware of your parent instincts. If you don’t understand something, ask for further explanation and for the reason that person came to that conclusion. And, keep working with your child to develop their interests and address their needs; while you wait.
Ambersley, K. (2013) affirms that we are now seeing our son develop an awareness that did not exist before. He is aware of a world outside himself and his place in it. This success is attributed to our focus on early intervention.
Suggestions about getting our son focused and exposed to art, science, various social settings, and extracurricular activities has been helpful to build team spirit, develop greater synergies with his peers, foster the ability to participate in team events, to bond and socialize with different people at all levels.
< My Thoughts > “…getting our son focused and exposed…”
A therapist, knowing that Sonny watched DVD’s of Blue’s Clues and Max & Ruby on a loop, suggested that we add a few frames from National Geographic's spliced into the end of episodes. These are simple ways to extend and expand horizons.
Ambersley, K. adds that autism is very unpredictable when looking ahead into the future. It is rather difficult to determine which of those autistic challenges and tendencies will stick for the rest of his life or gradually disappear over time. Real change is possible and inevitable because corrective action can be taken now!
UNIT 5 CHAPTER 1 – GETTING TO KNOW YOUR CHILD & YOURSELF & YOUR CONCERNS –
CHAPTER 1 – Getting to Know Your Child & Yourself & Your Concerns
INTRODUCTION –
What to do while you wait? Diagnosing autism spectrum disorder (ASD) can be difficult and time consuming. No blood test exists to diagnose ASD. Instead, doctors must look at the child’s developmental history and their observable behavior to arrive at a clinical impression and a long-term or short-term diagnosis, and suggested next step. Part of accomplishing this is by asking parents many ‘observational’ questions.
A professional diagnosis considers scores from standardized diagnostic instruments such as the Autism Diagnostic Observation Schedule (ADOS) completed by clinicians, and the Autism Diagnostic Interview-Review (ADI-R) which is a questionnaire completed by parents.
The ADI-R will depend heavily upon your answers as parents. When you can be authentic and candid with your answers, the picture of your child’s behaviors, social-communication, and environmental (sensory) responses will begin to emerge. Eventually, by knowing yourself, knowing your child and your child’s autism your path forward will become a little clearer.
< My Thoughts > “…become a little clearer.”
There may be a huge separation between who the child actually ‘is’ and the child that parents ‘want’ him/her to be. A child’s brain anatomy, genetics, and environmental setting determine who s/he will become. Once there is a diagnosis, many people will join you on your child’s developmental journey, adding their own diagnostic plan to assist your child.
Soto, T., Kiss, G., et al. (2016) say that once clinicians have identified, a) two social-communication symptoms, and b) at least one repetitive and restrictive behavior, as well as c) clear evidence of impairment, appropriately designed services will be tailored to improve and optimize the child’s development trajectory.
Grodberg, D., Weinger, P., et al. (2013) give us information about an Autism Mental Status Exam (AMSE), which was developed to add information and data which may be considered a more ‘observational’ part of the diagnostic process. This brief diagnostic tool, along with the ADOS and the ADI-R, is meant to quantify the clinicians’ ASD diagnosis.
< My Thoughts > “…more ‘observational’…”
The caveat here, which has probably been mentioned before, is that information derived from observations may be faulty, due to our ‘human’ nature. Assessment results may be skewed because the person answering the ‘observational question’ may be looking at a behavior either in an ‘objective’ or ‘subjective’ way. Meaning that sometimes we see what we ‘expect’ to see or ‘want’ to see, depending on our focus at the time.
Mattila, M., Jussila, K., et al. (2009) make known an additional instrument, the Autism Spectrum Screening Questionnaire (ASSQ). She says the purpose of their study was to learn the association between the parents’ rating score, the teachers’ rating score, and this test’s rating scores. They were hoping to correct any skewed results, in order to correlate scores between multiple informants. Thus, hoping to have a more factual verdict on which to base their decisions.
Hollocks, M., Casson, R., et al. (2019). have another screening assessment, the Social Communication Questionnaire (SCQ). They say that this screening tool is an acceptable instrument but itt depends greatly on the version used, the age of the participant, the accuracy of the parent and the teacher completing their part of the questionnaire. Added challenges mentioned were that the recommended services may depend on what other underlying mental health issues need to be considered.
< My Thoughts > “…accuracy of the parent…”
Try to track and keep some kind of data system which helps you with accuracy. Some parents find it easier to keep personal journals, while others use a calendar or file, or even an empty drawer or box to accumulate notes, appointments, etc.; just remember to date everything.
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 doing something to help your child. To feel that you are beginning to learn what to expect, such as the above assessments you may be presented with. This can become an important time of clarifying what concerns you and your family the most about your child's behavior, or development.
Make your ‘waiting time’ a time of clarification as to what you are seeing with your child’s behaviors. Clarification can help you give your most accurate and authentic answers to the many questionnaire questions you will be asked to complete. A favorite question people will ask of you is “When did you first notice this?” Why did ‘it’ become a concern?” Your accuracy in answering these things will lead to the kinds of services that you child will be offered, or that you will want to advocate for. Stay aware of your parent instincts. If you don’t understand something, ask for further explanation and for the reason that person came to that conclusion. And, keep working with your child to develop their interests and address their needs; while you wait.
Ambersley, K. (2013) affirms that we are now seeing our son develop an awareness that did not exist before. He is aware of a world outside himself and his place in it. This success is attributed to our focus on early intervention.
Suggestions about getting our son focused and exposed to art, science, various social settings, and extracurricular activities has been helpful to build team spirit, develop greater synergies with his peers, foster the ability to participate in team events, to bond and socialize with different people at all levels.
< My Thoughts > “…getting our son focused and exposed…”
A therapist, knowing that Sonny watched DVD’s of Blue’s Clues and Max & Ruby on a loop, suggested that we add a few frames from National Geographic's spliced into the end of episodes. These are simple ways to extend and expand horizons.
Ambersley, K. adds that autism is very unpredictable when looking ahead into the future. It is rather difficult to determine which of those autistic challenges and tendencies will stick for the rest of his life or gradually disappear over time. Real change is possible and inevitable because corrective action can be taken now!
UNIT 5 CHAPTER 1 – GETTING TO KNOW YOUR CHILD & YOURSELF & YOUR CONCERNS –
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.
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 whole and exact cause of AUTISM is yet unknown.
One ‘known’ is that autism is a NEUROLOGICAL difference in the child's brain.
Differences are possibly also caused by an interaction of genes & environment.
The child's developmental pattern can begin to look much different from other children their same age.
Autism’s differences 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.
< My Thoughts > “…begin to know yourself.”
Understanding your personal wants & needs as well as those of your child, your family, and of society are critically necessary to moving forward with services. When a new behavior plan was developed for Sonny, we were asked if it would work for us. My answer was that we will do whatever it takes to move him forward on his developmental path. But, you see, it isn’t that easy. If the family cannot be vigilant, consistent, and accept the ‘plan’ into their lives, then it becomes very difficult to move forward.
What can you do while you are waiting for the world of doctor’s appointments, consultations, complicated referral systems, and intervention program possibilities to open up to you?
Cohen, K. (2011) – All this doctor stuff pushes me to think more about the whole idea of Ezra’s being autistic. Autism is not actually a thing. It’s a constellation of symptoms. The questions that I have are more about what causes his autism.
Is it something outside of him, something that courses through his system like a virus, harming the real self? Or, is it interwoven with the fiber of his being? Where is the line between helping him and negating who he is?
< My Thoughts > “Where is the line…?”
Knowing your child, knowing yourself, knowing their autism, and you may begin to find the ‘line’, if you feel that you need to. This may be the place to reiterate that ‘taking early action’ does not mean jumping into a program or therapy which could end up causing harm. We parents are indeed on a ‘slippery slope’ and may need to ‘overthink’ everything.
Cademy, L. (2011) asks - Can Autism be cured? Every so often, I read about some herbal preparation, nutritional supplement, or alternative therapy that is supposed to ‘cure’ autism.
So, my brain went chugging along, and came up with an idea: what if there are two very different causes for Spectrum behavior?
One cause could be the genetic brain wiring issue that is inherited and has been a human variant for millennia. This type of autism is not affected by any alternative therapies, can’t be cured, and can be passed down to our kids.
The other would be non-genetic, but caused instead by some external factor. The symptoms are caused by that external factor, and may be reversible with the right therapy or may be permanent. A type of autism, not genetic and won’t be passed to one’s children. Cademy concludes that because the symptom list is so similar, we tend not to notice that there are two very different underlying conditions here.
< My Thoughts > “…two very different underlying conditions…”
Some say that brains are ‘hard wired’, affecting the way autism presents itself. Others believe that a child’s personality and temperament, will determine how their ‘developmental trajectory’ unfolds. While still others are certain that the brain has suffered environmental damages.
Note: More about this in UNIT 3, Chapter 3 on Personality and Temperament.
Here are some ways that you may start to discover who your child is 'behind' the autism.
- Prioritize your child's 'needs' and your 'wants'.
- Try new things, like teaching your child age appropriate 'developmental skills' in a noninvasive way.
- See what works and what doesn't, for both you and your child.
There is a reason for trying these things. Eventually, you may have to choose from available programs, therapies, and services that will be offered. Most are NOT free, but quite expensive; understand your child well enough to figure out which will work and which won’t. You may discover this by gently trying some simple noninvasive things on your own.
Also, try videotaping your child engaged in the concerning behaviors that you are seeing. 'Seeing is believing' for someone new to your child. Give them an opportunity to focus on the child’s behavior; NOT the anxious parent in front of them.
< My Thoughts > “…NOT the anxious parent.”
A physician who thought my concern over Sonny’s behavior was exaggerated, actually offered to write a script for me – an anxiety medication to calm ‘me’ down.
Staff Writer (2020) – There are screening and diagnostic tests, which when enough results are gathered, help professionals satisfy the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) autism criteria. An accurate diagnosis must be based on observation of the individual’s communication abilities, sensory issues, social interaction, and his or her range of daily activities and interests.
Knowing the distinction between medical diagnosis and educational eligibility can be confusing for parents and practitioners. School districts have the option of whether or not to accept a diagnosis from someone ‘outside’ the school system, if/when the diagnostician has used the Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition (DSM-V) criteria to determine this. School districts usually accept assessments and diagnoses from someone within the school system; for example, that of a school psychologist.
Some of the most commonly used diagnostic tests given, include –
- Autism Diagnostic Observation Schedule (ADOS-G) (Tests for social-communication skills & behaviors.)
- Childhood Autism Rating Scale (CARS). (A 15-item behavior rating scale; assessing from moderate to severe.)
- Screening Tool for Autism in Toddlers and Young Children (STAT) (For very young children.)
- Communication and Symbolic Behavior Scales (CSBS) (Are often implemented, as well.)
- Autism Diagnosis Interview-Revised (ADI-R) (A parent interview tool; almost always included in the diagnostic process.)
These evaluations usually assess to determine things such as your child’s cognitive level, language abilities, and ability for other life skills like eating, dressing, and toileting. For an official diagnosis, your child must meet the standards of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published by the American Psychiatric Association.
< My Thoughts > “…assessments and diagnoses…”
Finding out who your child is, through assessments and diagnoses, is really just the beginning. Hope to discover who your child is ‘developmentally’. Who your child is as a ‘student’ and ‘learner’. Who your child is as a ‘thinker’, and ‘communicator’.
Note: See APPENDIX A – UNIT 5; What To Do While You Wait?
CDC Staff Writer (2019) talks about other Tests – If your child needs additional tests, your next appointment probably will be with a team of ASD specialists – child psychologist, speech-language pathologist, and occupational therapist. You may also meet with a developmental pediatrician and a neurologist.Also, important to remember is that children with Autism Spectrum Disorder (ASD) can become ill or injured just the same as children without ASD. Regular medical and dental exams should be part of a child’s treatment plan.
Note: More about Medical/Dental Insurance in UNIT 6, Chapter 2.
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 Autism Spectrum Disorder, 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 knowing the child’s physical and mental health. Retrieved online from – Centers for Disease Control & Prevention (CDC) https://www.cdc.gov/ncbddd/autism/treatment.
< My Thoughts > “…a ‘separate’ health condition.”
So much of how the doctors and other professionals begin to help you and your child is done through ‘parent-reporting’. What is a ‘separate’ health or mental condition? A child can have Attention Deficit Hyperactivity Disorder, WITHOUT having autism.
Psychotropic drugs and less powerful medications can have physical and emotional side effects which need close monitoring. You should know if there are gastrointestinal (GI) problems due to their medication, their ‘barely nutritional’ diet, or other issues. GI challenges are common in children with autism. But, having GI issues does NOT indicate autism.
‘Know your child’ because, misinterpreting your child’s symptoms can mislead the doctors and professionals which can keep your child from the services they need.
Note: More about Medical/Dental Insurance in UNIT 6, Chapter 2.
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 say, “find a cure.” or to suggest any other interpretation. The intent is to clarify which are the child’s temperamental and personality behaviors and which are possibly an autism symptoms.
< My Thoughts > “…separating the child from the autism.”
Parents have cautioned me, “We don’t want to separate our child from the autism.” “Autism is a part of our 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, because of a sensory issue, or because he is having a seizure. Is he pressing his face against the door jamb because he needs to feel some pain? Or, is he having pain from a toothache or a sore in his mouth? That’s the difference, that’s the ‘separation’ to be determined.
Hopefully you can learn something about your child. Maybe you will find out that your child is just a ‘rascal’ at heart. Or, like Sonny, has the sweetest of dispositions. How do you ‘know’ your child’s autism, and the ‘core’ nature of it? By learning your child’s symptoms, you can understand the methods which will help your child accept things that may be happening.
And, hopefully you can learn something about yourself. 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 could send a child with ‘sensory issues’ spinning out of control.
Siri, K. (2010) Parents of autistic children need to adopt the mentalities of both a researcher and a warrior. As a warrior, you will experience the stress that accompanies battle. Battling autism can leave one feeling devastated and alone. You will need help and support along the way.
Note: More about Diagnosis in UNIT 2, Networking & Support in UNIT 6.
REFERENCES: UNIT 5 CHAPTER 1 – INTRODUCTION, CHAPTER 1, GETTING TO KNOW YOUR CHILD & YOURSELF & YOUR CONCERNS
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Cademy, L. (2013). The Aspie Parent: the First Two Years, A Collection of Posts from the Aspie Parent Blog; eBook Edition.
CDC Staff Writer (2019). Treatment for Autism Spectrum Disorder; Retrieved online from – Centers for Disease Control & Prevention (CDC) https://www.cdc.gov/ncbddd/autism/treatment.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Grodberg, D., Weinger, P., et al. (2013). The Autism Mental Status Exam: Sensitivity & Specificity Using DSM-5 Criteria for Autism Spectrum Disorder to Verbally Fluent Adults; Journal of Autism Developmental Disorders; V44, p609-614.
Hollocks, M., Casson, R., et al. (2019). Brief Report: An Evaluation of the Social Communication Questionnaire (SCQ) as a Screening Tool for ASD in Young People referred to Child & Adolescent Mental Health Services; Journal of Autism Developmental Disorders; V49, p2618-2623.
Mattila, M., Jussila, K., et al. (2009). When does the Autism Spectrum Screening Questionnaire (ASSQ) predict autism spectrum disorders in primary school-aged children?; European Child & Adolescent Psychiatry; V8, p499-509.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Soto, T., Kiss, G., et al. (2016). Symptom Presentations & Classification of Autism Spectrum Disorder in Early Childhood; Infant Mental Health Journal; V37:5, p486-497.
Staff Writer (2020). Screening Tests for Autism; Retrieved online from – www.verywellhealth.com/adi-r-test-use-in-autism-diagnosis-260241/
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2024
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. 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 any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
UNIT 5 What to Do While I Wait?
INTRODUCTION
Chapter 1 – Getting to Know Your Child & Yourself & Your Concerns
Chapter 2 – Determining Social & Personal Awareness
Chapter 3 – Working on Daily Living Skills aka
Getting Started with Concerns
Chapter 4 – Understanding A Child’s Thinking
PART 1 Learning Strengths
PART 2 Learning Weaknesses
Unit 5 – REFERENCES
Unit 5 – APPENDIX A
PLEASE READ DISCLAIMER –
UNIT 5 What to Do While I Wait?
UNIT 5 CHAPTER 2 – DETERMINING PERSONAL & SOCIAL AWARENESS
INTRODUCTION
Chapter 1 – Getting to Know Your Child & Yourself & Your Concerns
Chapter 2 – Determining Social & Personal Awareness
Chapter 3 – Working on Daily Living Skills aka
Getting Started with Concerns
Chapter 4 – Understanding A Child’s Thinking
PART 1 Learning Strengths
PART 2 Learning Weaknesses
Unit 5 – REFERENCES
Unit 5 – APPENDIX A
PLEASE READ DISCLAIMER –
UNIT 5 What to Do While I Wait?
UNIT 5 CHAPTER 2 – DETERMINING PERSONAL & SOCIAL AWARENESS
DETERMINING PERSONAL & SOCIAL AWARENESS
According to Duff & Flattery (2014), understanding ‘self’ is contingent upon understanding there is ‘other’, in other words, someone ‘other’ than ‘self’. They say that understanding ‘other’ also requires a high-level of understanding ‘object permanence’. We are reminded that “the understanding of ‘self’ is not present at birth, but develops through a process of social experiences.”
< My Thoughts > “…through a process of social experiences.”
In a Child Psychology class I’d taken, I remember hearing that the reason babies cry when mommy leaves the room is because they lack ‘object permanence’. One of the infant’s first confusing social experiences is when their mother leaves the room. They think that Mommy is gone forever, because the concept of her just being in another room is not part of the newborn’s social experiences or understanding, yet.
According to Duff & Flattery (2014), understanding ‘self’ is contingent upon understanding there is ‘other’, in other words, someone ‘other’ than ‘self’. They say that understanding ‘other’ also requires a high-level of understanding ‘object permanence’. We are reminded that “the understanding of ‘self’ is not present at birth, but develops through a process of social experiences.”
< My Thoughts > “…through a process of social experiences.”
In a Child Psychology class I’d taken, I remember hearing that the reason babies cry when mommy leaves the room is because they lack ‘object permanence’. One of the infant’s first confusing social experiences is when their mother leaves the room. They think that Mommy is gone forever, because the concept of her just being in another room is not part of the newborn’s social experiences or understanding, yet.
Duff & Flattery find that the tried-and-true method of knowing whether or not a child has discovered ‘self’, is to put rouge on their nose then place them in front of a mirror. If they touch their nose or try to wipe off the rouge, then they are relating to the image in the mirror as themselves – ‘self’.
They also found children with autism lack ‘joint attention’, which typically develops before an infant is 12 months; and is well established by 18 months.” Along with this deficit, they have difficulties with ‘first person’, I/you, pronouns. As an example of not understanding the “I” pronoun use – an adult might ask, “Bob, are you hungry?”, and the child responds “Bob is hungry.”
The authors believe that there are ways to teach this. For instance, Video Modeling can be one way to teach children about ‘self’ and developing ‘self-awareness’.
They also found children with autism lack ‘joint attention’, which typically develops before an infant is 12 months; and is well established by 18 months.” Along with this deficit, they have difficulties with ‘first person’, I/you, pronouns. As an example of not understanding the “I” pronoun use – an adult might ask, “Bob, are you hungry?”, and the child responds “Bob is hungry.”
The authors believe that there are ways to teach this. For instance, Video Modeling can be one way to teach children about ‘self’ and developing ‘self-awareness’.
< My Thoughts > “…‘self’ and developing ‘self-awareness’…”
Begin teaching your child to learn about ‘self’ by first playing around with the ‘mirror’ idea. Sonny has mirrors everywhere in the house. The only time I see him actually looking in the mirror at ‘his’ reflection is in the bathroom. He usually looks a little puzzled and taken back, but I think that he does recognize himself in the mirror. He also seems to see and know that the person’s reflection waving to him is me. He usually seems to recognize himself in pictures on the shelf and in photo albums.
Mukhopadhyay (2011) muses – one day I happened to realize that when people moved their lips, they made a talking sound known as ‘voice’.
For the next few days, I would go upstairs, and stand in front of the mirror, in the hope of seeing my lips move. I had every bit of patience with the mirror, and the mirror had every bit of patience with me.
Marks (2012) marvels that – Today, I ran into an old friend in Wal-Mart. She is also autistic. Everyone says, “Hello,” but not Becky and not me. She stares at space or something behind me. We are both nervous. I have to walk away and I do mean, ‘Have To’. I do not know how to tell her I have missed her. I think she knows that. I hope she does.
“Wait, Becky. I am sorry to run away,” echoes in my head. How different for us. No hugs, no kisses. Just glances. Click clack. Click clack. Click clack.
< My Thoughts > “Wait, Becky. I am sorry to run away…”
As a teacher, I’ve heard from my students that they would enjoy having a friend… but they just don’t want to do something with them… every single day! Also, they say that they often have unwanted anger reactions to things and say or do things that people don’t understand or can’t forgive. They admit that they do feel lonely sometimes, but just feel too different from other people to try to be their ‘forever’ friend.
Sicile-Kira (2014) says that “Social relationships are important to all people, yet are difficult for many on the autism spectrum to develop naturally.” “…having social skills, knowing about expected yet often unstated rules of behavior, and social boundaries.” “…there are different ways of teaching what is needed to be learned about relationships.” Some of the things she suggests are – Social Skills Training, Social Stories, Social Thinking, and hidden rules such as assumed knowledge, social hierarchies, and expected/unexpected situations.
By encouraging play, acting animated, happy; even singing and dancing around your child can be a place to start teaching about being social. Add new toys while letting him/her cling to the favorite toys. Encourage independence by helping the child dress and undress at appropriate times. Allow for favorite shirts, colors, or styles. S/he may not like tight or heavy clothing. Tags are a definite ‘no – no’ for most sensitive children.
< My Thoughts > “…teaching about being social.”
Babies begin being ‘social’ by interacting with those around them. They smile, coo, and show excitement when they recognize someone. They should also learn to calm themselves down when anxious or upset. Children with autism may not respond this way. That’s where the parent can try to teach or encourage this social/emotional development.
What to do while you wait? A favorite of parents and teachers for learning self-awareness would be teaching social skills through ‘Social Stories’. Carol Gray was the official originator of ‘Social Stories’ and you can find much online to learn more about her methods. Versions of these teacher/parent–made stories have been used the world over, in some form or another. You don’t have to take a class or follow a certain protocol in order to create them.
Crozier & Tincani (2007) tell us that a ‘social story’ is a short story written for an individual. The story describes a specific activity and the behavior expectations associated with that activity. You can also create a story to introduce ‘special’ events such as holiday gatherings, birthday parties, or other events.
So consider that if you are going to take your child to the park, you could create a little story to show them what to do or expect to see there. Here is an example of what the authors used as ‘Social Story’ text for a preschool boy who was mostly reclusive, but became animated during Preschool snacktime.
My name is Daniel
We have snacktime at school
Friends talk & share snacks
Some friends say “Hi”
Some friends ask for a drink
Some friends ask for more snacks
I can say “Hi” to my friends
I can ask for a drink
I can ask for more snacks
Friends are happy when we talk at
snacktime!
The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also, many need to have verbal prompts added for emphasis and to increase success. Use your creative license here.
My name is Daniel
We have snacktime at school
Friends talk & share snacks
Some friends say “Hi”
Some friends ask for a drink
Some friends ask for more snacks
I can say “Hi” to my friends
I can ask for a drink
I can ask for more snacks
Friends are happy when we talk at
snacktime!
The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also, many need to have verbal prompts added for emphasis and to increase success. Use your creative license here.
< My Thoughts > “Use your creative license here.”
Children with autism or autism-like behavior take in a lot more than parents are aware. They often use peripheral vision to watch your every move, but you’ll never catch them looking at you. So, create these social stories within his or her view. Best of all scenarios would be to have them choose a picture or help you in some way, however small. Of course, the latest twist on Social Stories are the APPs available so that you can create, present, and store your child’s stories on your iPad or iPhone.
Note: More about social stories in UNIT 3C.
Barnes (2014) believed that her son had none of the autism characteristics, so when he started having difficulties in pre-school interacting with other children, transitioning from one play area to the next, following instructions from teachers and staff, I didn’t initially think “neurological disorder.”
Then came a call from his first-grade teacher: “I am not a doctor or psychologist, but I spent 15 years in Special Education, and I think your son may have Asperger’s.” As the American Psychiatric Association describes it, his “symptoms [were] not fully recognized until social demands exceed[ed] [his] capacity.”
With creativity, we can lead him to expand his interests from dinosaurs to another related area of interest, and then to another, like concentric circles. Expanding his interests helps us not only show him the richness of the world; it also provides an opportunity to share social lessons.
REFERENCES: UNIT 5 CHAPTER 2 DETERMINING PERSONAL & SOCIAL AWARENESS
Barnes, E. (2014). Building in Circles: The Best of Autism Mom; eBook 2014 Edition.
Crozier, S & Tincani, M. (2006). Effects of Social Stories on Prosocial Behavior of Preschool Children with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V37, p1803 - 1814.
Duff, C. & Flattery Jr., J. (2014). Developing Mirror Self Awareness in Students with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V44, p1027 - 1038.
Marks, S. (2012). Paula’s Journal: Surviving Autism; eBook Edition.
Mukhopadhyay, T. (2011). How Can I Talk If My Lips Don’t Move?: Inside My Autistic Mind; eBooks Edition.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (Revised): The Complete Guide to Understanding Autism; New York, N. Y.: Penguin Random House Company. (Find Sicile-Kira on Social Media.)
APPENDIX A - Transition Guide
LINK by Department of Education –
Age Appropriate Transition Assessment Guide The Division on Career Development and Transition (DCDT) of the Council for Exceptional Children
Contents
· What is transition assessment?
· Why conduct transition assessments?
· How do I select instruments?
· How do I conduct an age-appropriate transition assessment?
· Sample Instruments
· Informal Assessment
· Formal Assessment
· Informative links to Podcasts and other sources of information about age-appropriate transition
assessment.
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2024
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