SIRS-ACTIVITY
                        b. Repetitious Behavior – 
 
Raulston & Machalicek (2017) point out that within the repetitive behavior literature, there are generally two categories described – Lower-order: involving motor stereotypy like hand flapping, rocking, lining up toys, or flipping pages of a book; usually found in those very young children. Higher order: including obsessive preoccupation with odd interests and excessive question asking; usually found in those with advanced language skills.
 
Also, telling us that the latest edition of the Diagnostic & Statistical Manual of Mental Disorders – DSM-5, describes four areas of Restrictive & Repetitive Behaviors (RRB) to include:

1. Stereotypy – repetitively tapping or banging an object on a surface; clutching, spinning, rolling, moving, or placing objects in a stereotypical manner.
2. Insistence on sameness – inflexible adherence to routines or ritualized patterns of verbal (echolalia) or non-verbal behavior.
3. Perseverative interests – uncontrollable repetition of a word, phrase or gesture despite the absence or cessation of a stimulus. Insisting to continue an act or activity without purpose.
4. Hyper or hypo activity to sensory input or unusual interest in sensory aspects of the environment

They give an example of a child spinning only one wheel of a toy car very closely in front of his or her eyes, over and over again. Thus not engaging in a more appropriate imaginative play or including others; becoming physically aggressive if his or her preferred activity is interrupted or stopped. Parents included in this study commented that these kinds of repetitive behavior were the most difficult aspects of autism for them. And, that they felt higher levels of stress as a result of this behavior.
 
< My Thoughts >         “…four areas of Restrictive & Repetitive Behaviors in the newer DSM-5.”
 
One of the reasons clinicians say this is an important part of the newer DSM-5 is because it changes how they arrive at an accurate diagnosis for persons with autism.
 
The Centers for Disease Control & Prevention (CDC) put it this way –

• Stereotyped or repetitive motor movements
• Insistence on sameness, inflexible patterns.
• Highly restricted &  fixated interests of abnormal intensity
• HYPO (under) or HYPER (over) activity to sensory input

Based on social communication impairments & restricted, repetitive patterns of behavior as noted in the CDC website – https://www.cdc.gov/ncbddd/autism/hcp-dsm.html
 
In an Overview of Repetitive Behaviors in Autism, expert and parent, Lisa Jo Rudy tells us that repetitive, purposeless behaviors, like lining up toys, spinning objects, or opening and closing drawers or doors can become a problem when getting in the way of ordinary daily activities.
 
She tells us that the DSM-5 lists abnormal, intense focus on repetitive motor movement of objects, speech and highly restricted fixated interests, or preoccupation with unusual objects. Focus on such things as – ritualized patterns of verbal or nonverbal behavior, flipping objects, echolalia, and/or idiosyncratic phrases. As well as, insistence on sameness; or, inflexible adherence to routines, and extreme distress at small changes. Above text by Lisa Jo Rudy; retrieved from: https://www.verywellhealth.com/repetitive-behaviors-in-autism-260582
 
< My Thoughts >         “…focusing on things…”
 
Sonny is nonverbal, he makes sounds and laughs, but no language, so all of his repetitive behavior is nonverbal. We purposely give him ‘interactive’ toys so that he can engage in ‘purposeless behaviors’. “Wait, what?” My reasoning is that, much like the autistic child or adult who repeats video scripts as a type of communication, Sonny can use his ‘See and Say’ toy. Of course, this is where the perseverance comes in.
 
“Someone poisoned the waterhole!” “Someone poisoned the waterhole!”  “Someone poisoned the waterhole!”…  (Courtesy of Tom Hanks’ voice, Toy Story 3) Sometimes accompanied by Sonny’s laughter… and sometimes by his sounds of frustration if his juice cup is empty.
 
Pushing the same button, over and over and over, for no apparent reason, can make the listener crazy. But, we have taken a cue from Sonny’s playbook, and just tune out what we don’t want to hear. Or, in the case of some really irritating sounds or phrases we just make a slight adjustment to that ‘See and Say’ button. Sometimes, I laugh, move him over and start hitting the button that yells “HELP MEEEE! HELP MEEEE! Smiles.
 
What perseverating may look like would be for the child to continue to have an adverse reaction to a noise, an action, or some undesirable stimuli… long after that stimuli has ceased. They may be unable to bring themselves out of prolonged stimming, even though the stimming isn’t calming them.
 
Zafer Elcik created Otsimo, a mobil education platform for his brother with autism. He tells us that outbursts or prolonged sessions of repetitive behavior can be signs of distress, joy, pleasure, or relaxation, as well as trying to attract attention. Hoping to help his brother and others gain speaking skills, he designed this app to reduce the need for unconventional perseverant speech and incessant question asking, i.e., echolalia.
 
Elcik believes that the prolonged duration of echolalia means not developing skills and socializing. And, that with speech therapies and trainings, echolalia can be reduced to effective acceptance, or even eliminated completely. Above text by Zafer Elcik; retrieved from: https://otsimo.com/en/avoid-repetitive-behaviors-autism/
 
Stokes (2018) says that children with autism have echolalia in greater frequency and is longer lasting when they have significant difficulty developing spontaneous generative language skills. She continues that many children with autism even repeat sophisticated utterances without an understanding of their meaning, or without any purpose at all. Some may have certain phrases they repeat when upset. One example she gives is the child who blurts out… “Everyone find a seat and start eating!” Or, another may answer questions by repeating the question back to you… “Want to go swing?”
 
< My Thoughts >         “…speech therapies, trainings, and echolalia …”

​Early in the late 1990’s, psychologists seem to assume that because those with autism did NOT have, or could NOT find the words to express what they were thinking, that they weren’t thinking at all. Sobel, Capps, & Gopnik (2005), explored the research to see if children with mental delay were more likely to perseverate than others. This study they found used the task of showing a single interpretation of an ambiguous figure of a rabbit/duck (see picture below), , to see if children were successful with ‘theory of mind’ tasks. ‘Theory of mind’ tasks (thinking that everyone is having the same ‘sensory experience’ that you are) seeming to be have been the gold standard assessment of the day.
 
They found a study where researchers of early social-cognition wanted to determine which children tended to perseverate on a single interpretation; children with autism, or those without. In that study, typically developing 5 year olds were said to have certain internal mental states such as beliefs, desires, intentions and emotions, with which children with autism may have difficulty.
 
< My Thoughts >       “…children with autism and those without.”
 
At this point, the researchers ‘assumed’ that children with autism were delayed in their social-cognition. That they didn’t have the same ability for ‘elevated performance’ or ‘theory of mind’ which was expected from their peers without autism.
 
One of the proposed tasks in the research Sobel, et al. discussed was to ask the child to look at a picture and tell the person what they saw. The picture in this case was an ambiguous drawing of what could be interpreted as either a duck, or a rabbit, or both. 

Note: Ambiguous figure of duck/rabbit (duck’s beak becomes rabbit’s ears)
 
If the child spontaneously sees both, it was thought that s/he had the ability for higher order social functioning. If they only saw one or the other, then that was noted. At the end, there was an opportunity for that child to learn that the drawing could reveal another animal, other than the one they first identified.
 
After the learning opportunity, if the child sees the additional animal, then it was noted that they possibly had ‘executive functioning’ and/or ‘theory of mind’ abilities. But, if the child refused to believe that there was the ‘other’ animal, then they were noted to be ‘perseverating’ on the first animal they identified. Thus, they were thought to be ‘restricted’ in their task behavior.
 
Considered in the study was the possibility that the participating child just didn’t have the appropriate verbal skills to give the expected response. Also, that the child’s mental-state somehow equated with the child’s ability for awareness and learning.
 
< My Thoughts >       “…child’s ability for awareness and learning.”
 
With Sonny and others, in the classroom setting, it’s always such a nice surprise to find out how powerful ‘awareness’ can be. That when showing a child another way to see something, understand something, or learn something… they often greet it with delight. They seem to know that they have just ‘learned’ something they didn’t know a minute ago. This is when ‘autism’ becomes ever a greater mystery as the teacher learns something about the autistic child that they didn’t know a minute ago. Smiles.
 
Raulston & Machalicek (2018) remind us that lack of screening and accurate assessment measures means that children with ASD are NOT likely to receive evidence-based practices. Therefore, there will be NO positive changes in the child’s developing nervous system and/or neuromuscular maturation. This means the child will continue with stereotypy behavior, insistence on sameness, and continued repeated ritualistic behavior.
 
< My Thoughts >         “…continue with stereotypy behavior…”
 
Reading the above authors also reminded me of two of my favorite psychologists – Piaget & Vygotsky. Their approaches resonated with me because they believed that all children learn through stages of self-discovery, self-reflection, and autonomy. And of course there’s Vygotsky’s “zone of proximal development”, which is to say… the child has to be in the ‘zone’ before they can learn what you are trying to teach them. So therein lies the key… how do you get the child in the ‘zone’ in order to get them out of the ‘loop’ of restrictive, repetitive behavior? Smiles.
 
Garcia-Villamisar & Rojhn (2015) want us to know that there are ‘comorbid’ disorders which possibly moderate the relationship between Autism Spectrum Disorder and Repetitive and Restricted Behaviors (RRBs). Some of these simultaneous chronic conditions are: stress, anxiety, depressive mood, communication difficulties.

Their study of adults with autism also considered an impaired ‘executive function’ as being related to the severity of RRB. That is the brain’s ‘executive function’ allows the brain to carry out a sub-set of functions such as – the ability to make, attend to, and effectively perform goal-directed plans. Also, the ability to self-monitor and inhibit certain undesirable or inappropriate behaviors was considered. In the end, they ruled out impaired executive function as a contributing factor.
 
Mostert-Kerckhoffs, M., Staal, W., et al. (2015) did however, find a study which explored the processes which play a role in RRB in an attempt to detangle the influences of ‘response inhibition’ and ‘attentional flexibility’. The results of which seem to suggest that both ‘executive function’ brain processes are highly correlated and both play a role in RRB behavior in daily life.
 
They found in this study that autistic individuals, both children, adolescent, and adults, showed significantly more control dysfunctions than typically developing study participants. These difficulties were found to extend to auditory and visual flexibility tasks. In conclusion, they offered a suggestion to at least consider these things when working with students, and/or clients.
 
< My Thoughts >         “…at least consider these things…”
 
Hundley, et al. (2016) would like us to consider another possibility which might well be part of the mix, and that is ‘sleep disturbances’ as associated with daytime behavioral problems. They add that poor sleepers were rated by their parents as showing more ritualistic and compulsive behavior in their children with ASD. Also mentioned by parents was the influence of nocturnal awakenings, sleep-onset delays and/or shortened overall sleep duration on their child’s anxiety and over-responsivity levels.
 
REFERENCES used here are:
 
Garcia-Villamisar, D. & Rojhn, J. (2015). Comorbid psychopathology & stress mediate the relationship between autistic traits & RRB in adult with autism; Journal of Intellectual Disability Research; V59, p116-124.
 
Hundley,R., Shui, A., et al. (2016). Relationship Between Subtypes of RRB & Sleep Disturbance in ASD; Journal of Autism & Developmental Discord; V46, p3448-3457.
 
Mostert-Kerckhoffs, M., Staal, W., et al. (2015). Stop & Change: Inhibition & Flexibility Skills Are Related to Repetitive Behavior in Children & Young Adults with ASD; Journal of Autism & Developmental Discord; V45, p3148-3158.
 
Raulston, T. & Machalicek, W. (2018). Early Intervention for Repetitive Behavior in Autism Spectrum Disorder: a Conceptual Model; Journal of Autism & Developmental Discord; V30, p89-109.
 
Sobel, Capps, & Gopnik (2005). Ambiguous figure perception and theory of mind understand in children with autistic spectrum disorders; British Journal of Developmental Psychology, V23, p159-174.
 
Stokes, S. (2018). Increasing Expressive Skills for Verbal Children with Autism; National Association of Special Education Teachers, https://www.naset.org/index.php?id=2771.
 
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< My Thoughts >      What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Echolalia)
 
No You Don’t – Essays from an Unstrange Mind by Sparrow Rose Jones, eBook Edition 2013; with < My Thoughts > by Sara Luker (Echolalia)
 
Focused Excerpts from the book (14% indicates location in the Kindle version of the book, instead of page numbers.)
 
14%       I get hung up on words or phrases. There are words that are so funny to me that I can’t say them without fits of laughter. So often, they are ordinary words but they sound so hilarious to me that I almost choke on them. Other words have a disgusting, oily feel to me and I don’t like to say them. Saying one of those words is a horrible sensory experience I try to avoid.

Ever since I was a child, I get stuck on a word and begin repeating it over and over, tasting how odd it feels in my ears. I have a strange relationship with language anyway. Sometimes my partner lovingly teases me by calling me “Data,” after the android character on  Star Trek: The Next Generation, because, like Data, my use of language is formal, almost to the point of being stilted, but I consciously insert colloquialisms I have collected from listening to others speak.

I admire a musical turn of phrase and have been known to cobbie together slang from a wide variety of sources in my speech. (I have also gotten in trouble with others more than once for using the wrong slang in the wrong place.)

< My Thoughts >             “…I get stuck on a word and begin repeating it over and over…”

Here is a transcript that I ran across from You-Tube, that I (Sara Luker) would like to share with you:

Why Do Autistic People Repeat Words & Phrases? What’s Echolalia? An Autistic Perspective by Christa Holmans – Neurodivergent Rebel; September 2018.
First I will explain what ‘echolalia’  is for me. So, often…someone will say something to me or I will hear something and I will repeat it back. Most of the time, I will repeat it back with the same rhythm and tonality that I heard this in… So it can be a spoken word or two; it can be a whole sentence; it can be a sound that I like sometimes.
 
Uh…and (chuckles) the problem sometimes is people think I’m mocking them. And there’re usually two reasons I’ll actually do this so I think it’s a good thing to explain so people know that I’m not mocking you—nobody! I’m not mocking anyone and I don’t think anyone is trying to mock anyone else when they do this. (laughs) So, I’ll unpack the misunderstanding there.
 
But, I mean, just how this places in to my daily life and my everyday life is, you know, when I’m relaxed and with people I’m close to—I’ve got, you know, a few close friends and family—I… typically just randomly use song—sounds and…in conversations, make funny noises, and I will burst into song (laughs). “I often quote movie clips and other catchy one or two-word phrases.”
 
Once someone said to me – before I was diagnosed – they said, “You just like the sound of your own voice, don’t you?”  I do kind of…like the sound of my own voice, but not in the way I think they intended.
 
You know, I like—I guess I’m seeker—I seek sounds. I like sounds; I like music. And it’s just something that I seek and I can stimulate my senses with my own voice by making funny sounds and funny voices and I enjoy the heck out of it. (shrugs and claps) And…that’s just my…very… plain English personal experience, uh explanation, of echolalia.
 
Transcript from – https://neurodivergentrebel.com/2018/07/04/why-do-autistic-people-repeat-words-phrases-whats-echolalia-an-autistic-perspective/ Includes You-Tube
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What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Incessant Questions)

< My Thoughts >      Autism repetitive behaviors definition from dailyhealthlifestyles.com relays that repetitive behaviors in autism can vary radically from person to person. For some people, it involves saying or talking about the same things over and over again (for example, listing all of Marvel's Avengers and their powers, reciting scripts from TV, or asking the same question many times in a row).

I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys with Autism by Jane Decker; eBooks 2011 edition with < My Thoughts > by Sara Luker (Incessant Questions)

Focused Excerpts from the book (2% indicates location in the Kindle version of the book, instead of page numbers.)
 
2%          Jaxson is my second son. Jake is my first son, who also has autism. Jake also can’t tell a lie.  Whenever he does something bad, he tells me about it immediately. For this reason, I think all people should have a touch of autism. Truth in advertising – you know what you’re getting.
 
3%          I straddle Jaxson, holding his wrists down, hoping he’ll calm down enough so that I can get off him. I need an Ibuprofen. He’s in the middle of one of his tantrums and he’s all over the place – one moment kicking me in the stomach, the next moment patting me on the head.
 
6%          I headed off to find out what was broken in the other room, hoping Jaxson didn’t need stitches.
 
“Mom, who is more irritating, me or Jaxson?” I stood over a broken Christmas bulb on the kitchen floor. 
 
“You both have your moments,” I told Jake. “What do I do that’s as bad as his fits?” 
 
“You ask a lot of questions. Questions, questions, questions. Questions are good, but sometimes when they’re coming as fast and furious as you ask them…it feels like getting hit with one of your brother’s little fists. Or a stun gun.”
 
“I guess I’m just bi-curious,” said Jake. I smiled. “Where did you hear that word?” “On TV somewhere,” Jake said as he picked up a few shards of red glass.
 
< My Thoughts >             “Questions, questions, questions.”
 
I’m going out on a limb here, but having been around many verbal students with autism, my ‘semi-educated’ guess about the constant question asking is as follows –
 
Autistic children often are stuck with thoughts that won’t go away. Saying repetitive words or sing-songy words, or continually checking on something becomes their daily mantra or comforting ritual. Perhaps there is comfort in communicating and connecting with the adults in their world, by asking never-ending questions. After all it’s a way to get into the adult conversation game when they have not yet learned the social skills of an appropriate back-and-forth conversation.
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< My Thoughts >      What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Perseverate on perceived injustice). I offer this story here because while Sonny is non-verbal, due to the way his brain was formed, there are those who choose to be mute at times. This condition isn't often covered in the professional literature, so I wanted to include it here. Smiles.
 
The Aspie Parent, the First Two Years A Collection of Posts from the Aspie Parent Blog by Liz Cademy, eBook 2013 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (26% indicates location in the Kindle version of the book, instead of page numbers.)
 
26%       Writing from the blog – My son hates injustice and hates to be misunderstood; this can incite anger and rage. He is prone to temper or crying meltdowns, even in public, sometimes over small things. He’s even prone to ‘mutism’ when stressed or upset… or speaking in a raspy voice or monotone at times when stressed of sad. Strong sensory issues, like sounds, sights, smells, and touch bring on overload; even bouts of depression.
 
< My Thoughts >                            “…prone to ‘mutism’ when stressed or upset…”
 
Muris & Ollendick (2015) say selective mutism (SM) is a relatively rare childhood disorder characterized by a consistent failure to speak in specific settings (school, &/or social situations) despite speaking normally in other settings (at home). To establish the diagnosis the DSM-5 specifies that the absence of speech (SM) should be present for at least one month.
 
Furthermore, the DSM-5 states it NOT be attributable to lack of knowledge or discomfort with, the spoken language. And finally, that it should be an interference with daily functioning in those chosen settings (school, &/or social situations).
 
Clinicians noted that these persons also showed comorbid symptoms of anxiety-related behaviors simultaneously, such as shyness, withdrawal, and avoidance. Behavioral inhibition and SM seem to be linked, although they found no empirical support for that relationship.
 
One investigation, they say, showed a small percentage of children who met the full criteria for Oppositional Defiant Disorder (ODD). Parents reported them to be stubborn, sullen, irritable, and shy. They mentioned ‘situational anxiety’ and possible anxiety when separated from parents; although these actually being comorbid symptoms being experienced simultaneously was debated here by experts.
 
A suggestion was that psychologists, psychiatrists, and other mental health professionals consider remaining alert to the multifaceted nature of this disorder. And, to individually addressing, any of the other difficulties they find; such as problems with audio functioning, cognitive, speech/language development and other debilitating problems.
 
REFERENCES used here are:
 
Muris, P. & Ollendick, T. (2015). Children Who are Anxious in Silence: A Review on Selective Mutism, the New Anxiety Disorder in DSM-5; Clinical Child & Family Psychology Review, V18, p151 – 169.
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SIRS-ACTIVITY, a. Sensory Interests, continued –
                           (a.1.)  Self-Injurious Behavior
 
In the DSM-5, part of, and listed under Sensory Interests, is Self-Injurious Behavior (SIB). Thompson (2012) states that the most common emergent forms of self-injury are finger, hand, and wrist biting and hitting head with fists or against hard surfaces. Once self-injury becomes entrenched behavior, it is often difficult to eliminate.
 
A parent reports that there were periods that her son struck his head so hard and so often, it caused severe bruising on the back of his head. His only form of communication, as soon as she gave him what he wanted he stopped.
 
Often SIBS are found to be included in ‘Challenging Behavior’, or ‘Behavioral Disturbances’ instead of a stand-alone sensory issue. Soke et al. (2017) the reasons may be that studies find both environmental and biological factors have been implicated in studies of SIBs since 1977.
 
These authors say that generally SIBs are difficult to manage and may result in hospitalizations, exclusion from educational or vocational activities, admission to residential facilities, and even in death. They believe that previous studies are lacking and SIBs have been associated with everything from maternal smoking, sensory issues, gastrointestinal problems, aggression, insomnia, age and gender, severity of co-morbid behaviors; and everything in between.

Chezan et al. (2017) claim that SIBs is a relatively common problem behavior among children with Autism Spectrum Disorder (ASD). This review covers a broad category of problem behaviors, including verbal and physical aggression, property destruction, and tantrums. Severe SIBs require an intervention that is both effective and efficient.
 
Without effective interventions, they say, it can have a negative impact on children’s quality of life, limiting development and even leading to health-related problems. Interventions have the potential to prevent or reduce the frequency and severity of SIB, but if allowed to persist across time may continue until adolescence and adulthood.
 
Sicile-Kira  (2014) thinks that some children with autism participate in self-aggressive behavior because they could be in pain and don’t have any other way of communication this. She also has seen ASD persons self-injuring in the throes of a PTSD flashback.
 
She defines SIBs as hitting, biting, head banging, flicking fingers, or slapping oneself as a possible method of sensory seeking stimulation to relieve anxiety, pain, or frustration. Others believe that there is something missing in their diet or something they are getting in their diet that they should avoid.
 
Those lacking stimulation from their environment may seek it through self-abuse. Some self-abuse is in response to smells, being touched, auditory and visual overstimulation or under-stimulation. Still others believe medication can be found to counteract symptoms.
 
< My Thoughts >       “Others believe medication can be found to counteract symptoms.”

Some of the things that Sonny does, as a result of his autism, is self-injurious behavior (SIBs). With him, this seems to be compulsive, ritualistic, and some sort of stimulation or communication. This was before finding a method of communication and a therapeutic dosage of medication to help him, too. He would strike out to bite or hit himself and others. He would stick a finger in his eye, poking and poking until restrained. When Sonny is under medicated, stressed, and/or can’t get what he wants he will tantrum and bite himself until his needs are satisfied.

He has other undesirable and even dangerous behaviors, which I will not go into here. I’m sure you get the idea of how frightening this can be. The caveat with Sonny is that as well as sad or mad, he can and will often do this self-injurious behavior as a result of being happy and excited about something he’s thinking about or doing. So first, we must stop the risky behavior and then try to find out why. Smiles.

Bogdashina & Casanova (2016) believe self-stimulating behaviors can occur when autistic children are seeking control of their Autonomic Nervous System. One intervention can be a desensitization intervention of the affected areas performed by a qualified and experienced therapist. Another intervention can be exploring deep pressure, squeezing by cushions, or a weighted blanket may help.
 
They say that when excessive aggression, anxiety meltdowns and panic attacks occur, physical exercise like swinging, climbing, or pushing heavy objects relieve some people. Self-monitoring behavior and other coping mechanisms can be taught for less severe cases of SIBs, to help your child feel safe, trusting their environment.
 
Sarris (2012) tells parents that early symptoms of autism may be among the most puzzling. Some are barely noticeable, such as response to lights, heat, cold, or physical discomfort. Using their hands or body to manipulate things is not always seen as problematic behaviors.
 
 < My Thoughts >      “Some are barely noticeable…”
 
Sometimes the sensory response causing the self-injurious behavior is an attempt to fix what’s wrong. But often, they don’t know what is wrong or how to fix it. A child who bites themselves because they are too hot or too cold, doesn’t know that putting on or taking off a sweater can make them more comfortable. Of course, trying to get a sweater on or off, may be a challenge of its own! Sonny just reacts as if there is some sort of task assignment taking place. Smiles.
 
Sarris (2015) cautions that self-injury can persist into adolescence. Violent episodes of challenging repetitive behavior can lead to cuts, bruises, dental problems, and even broken bones, concussions, and detached retinas. She tells how frightening this is because it seems to violate our basic instinct of self-preservation. Those parents are deeply challenged to protect their offspring. They childproof their homes, buckle their seat belts, walk them to school, shielding them from outside harm. But she questions how they can protect them from themselves?
 
Wright (2018) believes that a behavior consultant is able to offer new insight for the entire family to digest and begin to shift the perspective needed to track and record behavior. An example would be – The family is concerned that Johnny seems to be an aggressive child, frequently hitting those in his environment. Through BEHCA data collection the behavior consultant is able to find that Johnny is NOT doing this on purpose but as a sensory response to his environment. He is also NOT aware of how hard he is hitting.
 
Taking this further, she says that perhaps Johnny’s behavior is due to his NOT knowing what his body is doing. He is lacking spatial awareness. Or, by slamming his body/arms into things or people, he is seeking sensory input. But, he is NOT intentionally trying to hurt anyone.
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3.         SIRS-ACTIVITY… (a. sensory interests, b. repetitious behavior, & c. seeking behavior).
 
Occupational therapists often observe that some children demonstrate extreme behaviors which have been labeled ‘sensory interests’, ‘repetitious’ behavior, and ‘sensory seeking’ behaviors; according to Kirby, et al (2015). Multiple types of behaviors, include – spinning, flapping hands while fixation on spinning objects, fascination with certain noises, interest in bright lights, moving objects, mouthing and smelling objects.
 
Therapists say that interestingly, 59% of children whom they have observed, did not display many expressions of enjoyment while engaging in sensory activity. Yet, finally considering that few conclusions can be drawn from this about what emotional associations children may have when participating in these sensory activities.
 
Ausderau, et al. (2014) believe that while for Diagnostic and Statistical Manual of Mental Disorders -5 (DSM-5) define sensory features uniquely and distinctly, they say that –
 
Their research suggests that certain patterns of HYPO & HYPER activity can co-occur within individuals in reaction to stimulus from the environment. Saying that within each sensory pattern there are underlying concepts. For instance, SIRS activity is characterized by fascination with or craving the sensory stimulation such as with flickering lights or rubbing textures. And, movement, especially jumping up and down, as on a trampoline.
 
Depriving a person of engaging in intense repetitive behaviors, experts expect may increase anxiety, and depression. This may even cause separation anxiety. Cautioning that those with higher ‘sensory seeking needs’ will often disengage from the behavior more slowly.
 
< My Thoughts >       “…within each sensory pattern there are underlying concepts.”
 
These are thoughts I have gathered while pursuing information about ‘sensory activity’ on gossamer wings. Smiles. Sensory activity is considered to be part of:

• A biological process
• ‘Attentional’ disengagement, of sorts
• Weak stimulus, creating a strong reaction, and/or
• Strong stimulus, creating a weak reaction
• Feelings of being overwhelmed by irrelevant stimuli
• Change in brain activity, topography, and function

Wigham, et al. (2015) say indications are that intolerance of uncertainty plays an important role in sensory activity. That sensory activity can be ‘heightened and unpleasant’ and/or ‘reduced and under responsive’, alternately. And, that the same modalities can be fluctuating within the individual at any time.

Kirby, et al. (2015) states that a personal account by Naoki Higashida (2013) corroborates an positive affect association of sensory behaviors – “in his book, The Reason I Jump” is because when I jump, it feels so good.”

REFERENCES used here are:

Ausderau, K., Sideris, J., Furlong, M., et al. (2014). National Survey of Sensory Features in Children with ASD: Factor Structure of the Sensory Experience Questionnaire; Journal of Autism Developmental Disorders; V44, p915–925.

Kirby, A., Little, L., Schultz, B., Baranek, G., (2015). Observational Characterization of Sensory Interests, Repetitions, and Seeking Behaviors; American Journal of Occupational Therapists; V69:3, published online.

Wigham, S., Rodgers, J., South, M., McConachie, H., Freeston, M. (2015). The interplay Between Sensory Processing Abnormalities, Intolerance of Uncertainty, Anxiety & Restricted & Repetitive Behaviors in Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V45:4, p943-952.
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< My Thoughts >       What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience.
 
Ido in Autismland: Climbing Out of Autism's Silent Prison by Ido Kedar, eBook 2012 Edition; an Extended Review with < My Thoughts > by Sara Luker

(7% indicates location in the Kindle version of the book, instead of page numbers.)
 
7%       Ido (pronounced – ee-doh), a 15 year old boy, explains: Imagine being unable to communicate because you have a body that doesn’t listen to your thoughts. Imagine living in a body that paces or flaps hands or twirls ribbons when your mind wants it to be still or, freezes when your mind pleads with it to react.
 
8%       On the outside, the scream came out through his hands, vigorously flapping at the wrists. This was quickly redirected with the command, “Hands quiet.” He was trapped.
 
< My Thoughts >        “…the scream came out through his hands…”
 
Eventually, because his mother never gave up, Ido learned to communicate through those ‘screaming’ hands onto a letterboard created by Soma Mukhapadhyay. This, he says – “lifted him from darkness.”
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2.         HYPER-ACTIVITY…  (overactive), is defined by an exaggerated or avoidant response to sensory stimuli.

Bogdashina & Casanova (2016) describe HYPER-Activity as the channel that is too open, and as a result, too much stimulation gets in for the brain to handle. Continuing to say that children with hyper-activity often ‘stim’ in order to try to normalize their sensory input.

Sometimes they rock, spin, flap, or tap in order to calm themselves. Coping with unwanted stimulation can often result in covering eyes or ears and making noises to block out sensory stimulation.
 
These authors explain that Hyper-activity is said to be an acute, heightened, or excessive sensitivity to what is going on around in the environment. Under florescent lights such children can see a 60-cycle flickering where the whole room pulsates, as a result. One person said, “My world was fragmented. My mother was a smell, my father a tone, my brother was something moving.” Another said, “I remember being attracted to pieces of people’s faces. Their hair, their, eyes, or their teeth attracted me.” Seeing parts instead of wholes, saying  perception is often fragmented, distorted, or delayed.
 
< My Thoughts >       “perception is often fragmented, distorted, or delayed.”
 
Phelan (2015) further explains the circumstances of one’s perception. She says that upon hearing a dog bark, many of us pay attention briefly then carry on. But a child having a negative experience with dogs may respond with a startle response, feeling anxious until s/he feels assured they are out of harm’s way. For some with sensory issues, that heightened state of alertness will continue throughout the day.
 
Bogdashina & Casanova continue, quoting Tito Muknopadhyay who describes his hyper excitable state: “Panic took over my eyes, blinding them shut. It took over my ears, deafening me with the sound of a scream which was my own. I had no power to stop it.”
 
< My Thoughts >       “Coping with unwanted stimulation can often result in covering eyes or ears…”
 
Ausderau, et al. (2014)believe that while for Diagnostic and Statistical Manual of Mental Disorders -5 (DSM-5) define sensory features uniquely and distinctly, they say that –
 
Research suggests that certain patterns of HYPO & HYPER activity can co-occur within individuals in reaction to stimulus from the environment.
 
Donkers, et al. (2015) talk about ‘mismatched’ reactions to environmental stimulus. They say that brain response can cause them to cover their ears because it triggers a memory, not necessarily because the sound is extremely loud and painful.
 
Neil, et al. (2017) remind us that it is important to choose which behaviors are HYPO and which are HYPER, because measuring and labeling is important to provide funds for various services from insurance companies. This may not optimally account for the full range of sensory symptoms the child is experiencing. For instance, the question may be… “Does your child show an unusual response to…”. The scoring does not divide hypo from hyper responsiveness. Then there is our Sonny who reacts the same for ‘happy’, ‘sad, and ‘mad’! Smiles.
 
REFERENCES used here are:
 
Ausderau, K., Sideris, J., Furlong, M., et al. (2014). National Survey of Sensory Features in Children with ASD: Factor Structure of the Sensory Experience Questionnaire; Journal of Autism Developmental Disorders; V44, p915–925.
 
Bogdashina, O. & Casanova, M.(2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
 
Donkers, F., Schiput, S., Baranek, G., et al. (2015). Attenuated Auditory Event-Related Potentials & Associations with Atypical Sensory Response Patterns in Children with Autism; Journal of Autism Developmental Disorders; V45, p506–523.
 
Neil, L., Green D., Pellicano, E. (2017) The Psychometric Properties of a New Measure of Sensory Behaviors in Autistic Children; Journal of Autism Developmental Disorders; V47, p1261–1268.
 
Phelan, S. (2015). Understanding the Subtypes of Sensory Processing Disorder; Retrieved from
nspt4kids.com › Resourses > Occupational Therapy.
================
NOTE: Stories which may reveal real-time evidence of Sensory Issues ~
 
Someone I’m With Has Autism by Carrie Cariello & Jordan Capell, eBook 2015 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
Extended Review with < My Thoughts > by Sara Luker (18% indicates location in the Kindle version of the book, instead of page numbers.)
 
18%       Jack has common self stimulation practices include things like hand-flapping and humming.  He tends to gallop across the room with his fingers in his mouth and to grunt or loudly clear his throat.  We call it his “zoomies.”
 
31%       “But wait,” Rose said with a  worried look. “What if Jack, you know, bounces around? Because of his owt-ism?” Charlie added quietly, “Yeah mom. You know, he has a hard time sitting still. What if he has his zoomies?” “Jack do you need to zoom?” “NO! I WAS STILL!”
 
We all looked over at him, galloping across the kitchen at that very second. Henry leaped up from his seat and joined his big brother. Together they bounced the span of the kitchen and family room, back and forth, back and forth.
 
52%       “Mom, remember last year at your sister’s party how excited Jack was? He was bouncing from room to room, making his way around the guests as he stimmed and zoomed. Every once in a while he would take his fingers out of his mouth long enough to screech about the dogs getting out.”
 
“Yes, I watch him every day through the school bus windows, stimming and zooming, eventually taking a seat. By himself.”
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SENSORY CATEGORIES, BLOG #5H
 
According to Ausderau, et al. (2014), there are four sensory response categories, or sensory patterns. They are – HYPO (under active), considered a lack of or delayed response to sensory input, or even lack of orienting to loud sounds and slow to react to pain.

​HYPER (over active), is defined by an exaggerated or avoidant response to sensory stimuli. Such as discomfort to grooming (dressing) activities, covering ears in response to sounds.

SIRS (sensory interests, repetitious & seeking behavior), is characterized by fascination with or craving the sensory stimulation as with flickering lights or rubbing textures.

EP (enhanced perception) has emerged as the fourth pattern of sensory response possibly unique to individuals with ASD. EP is characterized by strengths in locally oriented visual and auditory perception and enhanced low-level discrimination or low threshold detection and hyper-systemizing cognitive styles.
 
1.         HYPO-ACTIVITY… (under active), Ausderau finds that the brain is deprived because too little stimulation gets in and the channel is not open enough. The sensory system is under-responsive. Or, the normal processing of smells, sights, sounds, touch, and movement is dulled, under-developed, or processing the stimuli incorrectly.
 
Always on the move… frequently twirling, spinning, running round & round. Attracted to lights. Rocks back & forth when watching TV. Likes to look at things upside down. No safety awareness. Jumps off furniture & high places; loves the trampoline. Often sudden outbursts of self abuse. Easily vomits from excessive movements. Has difficulty changing body position. Shuts out the world when engaged in body movements. Thinks in movements.
 
Has low muscle tone, weak grasp, drops things. Doesn’t feel hunger. Likes to lean on things & people. Bites & sucks on fingers & hands. Chews on things, grinds teeth. Hits, bumps & pushes others. Enjoys crashing into things. Intentionally falls on the floor. Engages in ritualistic body movements when frustrated or bored. Watches feet when walking & hands when doing something. Talks about non-existent experience… “I am flying…”.
 
Sabatos-DeVito, et al. (2016) explain that hypo-responsive behaviors are particularly associated with autism and have been reported as early as 9-12 months of age. They also point out that hypo-responsive children may be less sensitive to novelty, thus taking longer to notice and process ‘novelty’ in the environment.
 
< My Thoughts >       “…taking longer to notice and process ‘novelty’ in the environment.”
 
To better understand why taking longer to notice and process ‘novelty’ in the environment can become a critical issue, here is a quote from Evans, et al. (2012) – “Children scoring high on ‘novelty’ awareness tend to be more social, can control impulses, and are better able to comply with tasks they are given.”
 
As you can see, the hypo-responsive child doesn’t recognize that this ‘novelty’ may be something new and fascinating in their environment. Without being able to peak the child’s interest, the parent, teacher, or clinician will have difficulty finding a teachable moment which can bring the child closer to learning. My own son becomes so fixed on what he is looking at that he refuses to disengage long enough to see a new toy or puzzle. Then when he finally responds, maybe hours later, he gives it the ole periphery look, out of the corner of his eye as he passes by. Smiles.
 
REFERENCES used here are:           
 
Ausderau, K., Sideris, J., Furlong, M., et al. (2014). National Survey of Sensory Features in Children with ASD: Factor Structure of the Sensory Experience Questionnaire; Journal of Autism Developmental Disorders; V44, p915–925.
 
Evans, C., Nelson, L., Porter,C. (2012). Making Sense of Their World: Sensory Reactivity & Novelty Awareness as Aspects of Temperament & Correlates of Social Behaviors in Early Childhood; Journal of Infant & Child Development; V21, p503-520.
 
Sabatos-DeVito, et al. (2016). Eye Tracking Reveals Impaired Attentional Disengagement Associated with Sensory Response Patterns in Children with Autism; Journal of Autism Developmental Disorders; V46, p1319–1333.
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POSTER sayings…
Clockwise @ 12 o’clock, starting with –

• I can be sensitive to loud noises
• I don’t like to brush, wash, or cut my hair
• I like to smell people & objects, sometimes
• I don’t like tags on my clothes
• I don’t like to wear clothes
• I enjoy being squeezed, I like pressure
• I don’t want my hands dirty
• I have poor fine motor skills
• I get overstimulated & meltdown
• I get fearful & anxious sometimes
• I overreact to minor scrapes & cuts
• I cling to adults I trust
• I sometimes walk on my toes
• Poor body awareness
• I crave fast spinning
• I lose my balance
• I like wearing the same clothes
• Sometimes I don’t like to be touched
• I have poor gross motor skills
• Can be clumsy & fall over things sometimes
• I am a picky eater
• Some smells really bother me
• I don’t like bright lights
• I don’t like to brush my teeth

Part 7 BLOG #5G Know Your Child: Sensory Response

Bogdashina & Casanova (2016) give examples which are often reported by those with sensory issues may be… unable to tolerate smells from the lunch room, or intolerance for noise such as that of other children or fireworks/vacuum cleaners, being unable to move without fear or feeling nauseous, clothes that are intolerable, craving bumping and crashing into things/people.
 
Or, perhaps the opposite is observed where the child does not seem cuddly or recognize when they are hurt, does not seem to hear auditory information, or will not sit still. Often one may hear this being described as being over-reactive or under-reactive to eat, drink, and learn new skills.
 
Sensory Reactivity definition
 
Important here is that sensory reactivity is a Diagnostic & Statistical Manual of Mental Disorders, Fifth Edition, 2013 (DSM-5) criterion for autism spectrum disorder (ASD). The Sensory System Modalities are Auditory (what we hear), Visual (what we see), Tactile (what we feel or touch), Gustatory/olfactory (taste & smell) and Vestibular/propriceptive (sensory signals from ears & eyes which affect body movement & balance).
 
Tavassoli, et al. (2015) help clarify between the two terms – Sensory Reactive and Sensory Responsive. In their article, they clarify the term Sensory Reactive is more consistent with the DSM-5 language. As in the new DSM-5, Sensory Reactivity is included in the criteria for Autism Spectrum Disorder specifications.
 
Specifically, hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment. While these authors feel there is a need for more objective direct clinical assessments, here is a list of some currently used by clinicians –

• Sensory Processing Scale Assessment (SPS)
• Sensory Integration & Praxis Tests (SIPT)
• Sensory Processing Assessment for Young Children (SPA)
• Tactile Defensiveness & Discrimination Test (TDDT-R)
• Infant Test of Sensory Functioning

​The Sensory Processing Scale Assessment (SPS) is described by Tavassoli, et al. as fifteen structured games which participants play as clinicians observe and note the behavior displayed as they perform these tasks. (See description below).
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Aggression, violence, challenging behavior –   Sensory Impairment
 
Aggression, violence, and other challenging behavior may really be signs of Sensory Issues. Denman, et al. (2016) say… Families of a child diagnosed with autism can find themselves trying to understand their child’s behavior while on the waiting list for ‘formal diagnosis.’ How this ‘parental making sense’ of behaviors affects parenting. Continuing saying that confusions can also occur with children who have insecure attachment patterns and sensory impairments.
 
Also that it is hard for parents to understand how a slight change in routine can cause a child to have a ‘meltdown’ in the middle of the street. At the same time, parents are concerned about the need to present a ‘positive identity’ to others; while allowing ‘face saving’ while around friends and family members.
 
< My Thoughts >       Uninformed society says, “Bad kid… bad parenting… or both.” Or as someone so appropriately stated… “He’s not giving me a bad time…”  “He’s having a bad time…”
 
 What I am offering here are powerful stories which may capture at this moment, what it is like to have this experience.
 
What Color is Monday? How Autism Changed One Family for the Better by Carrie Cariello, eBooks 2015 Edition; with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book (13% indicates location in the Kindle version of the book, instead of page numbers.)
 
13%     We accepted the diagnosis and forged ahead, getting Jack into as many services as we could.  I do think in the back of our minds we both harbored the notion that he would outgrow this, that his symptoms would diminish and he would blossom into a typical child.
 
14%     Jack was very difficult that spring.  In his preschool back in Buffalo he’d started biting and kicking both kids and teachers, and everyone seemed at a loss as how to control his behavior.  At home he’d started to hit both Joe and I, and to get into mischief…
 
< My Thoughts >  “…he’d started to hit both Joe and I…”
 
Frea, et al. (2001), tell us that “…exhibiting extremely challenging behaviors can be improved with some sort of intact communication system which allows the child to express choices and preferences, in all settings.”
 
REFERENCES used here are:
 
Frea, W., Arnold, C., Vittimberga, G., Koegel, R. (2001). A Demonstration of the Effects of Augmentative Communication on the Extreme Aggressive Behavior of a Child With Autism Within an Integrated Preschool Setting; Journal of Positive Behavior Interventions; Vol.3:4, p194.
 
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Part 5 BLOG #5E Know Your Child: More About Law & Autism & Parenting and < My Thoughts > by Sara Luker
 
LIGHTING UP FAMILY LAW IN BLUE: AUTISM’S IMPACT ON THE FAMILY AND FAMILY COURTS
By:Ron Payne Ed. Note: This article was authored by Kimberly J. Byrd, Esq
 
Byrd (2018) tells us that parents often battle with the diagnosis of autism. Instead they may choose isolation from extended family and community. The unpredictability of their child’s behavior when experiencing episodes of ‘sensory overload’, ‘social issues’, ‘cognitive’ and ‘behavioral’ limitations.
 
Bogdashina & Casanova (2016) tell us that behaviors such as rocking, rhythmic head banging, spinning objects, or perimeter hugging in large spaces can be sensory perception issues.

​They go on to say that autism is often considered an ‘obsessional ritualistic behavior’ or unusual interest in their sensory environment. This results in the child heightened fascination with spinning objects, certain sounds, and or lights.
 
Excessive touching, or smelling objects, as well as other sensory behavior one might find normal with a blind person, can be early signs of sensory issues. Some researchers believe these are often early signs of autism in young children.
 
Retrieved from:  http://senseablekids.com/sensInt.html

Widely recognized is A. Jean Ayres' definition of sensory integration. "Sensory integration is the neurological process that organizes sensations from one's body and from the environment, and makes it possible to use the body to make adaptive responses within the environment.
 
To do this, the brain must register, select, interpret, compare, and associate sensory information in a flexible, constantly-changing pattern."

Simply said, sensory integration is the relatedness of one to others, one to their environment, and one's ability to adjust oneself to function within the environment with oneself, others, and objects within it.
 
According to Byrd (2018), researchers typically describe the parenting stress of children with autism as greater for both parents than for other disabilities. Also imposed upon the family are limits on career opportunities and the high likelihood that one or more parents need to remain in the home to care for the autistic child/adult.
 
< My Thoughts > A story to share…  Focused Excerpt from –
 
Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts by Susan Senator, eBook  2006 Edition; an Extended Review with < My Thoughts > by Sara Luker
 
Focused Excerpts from the book – (3% indicates location in the Kindle version of the book, instead of page numbers).
 
3%       We as a family are frequently hamstrung by Nat’s unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend’s party without first wondering, “Can Nat Handle it?”

Despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn’t, he can be just plain unpleasant, unhappy, or embarrassing in public.
 
5%       Having Nat has tested our marriage, forcing us to stick together even when we have been tempted to run. My husband Ned has had to adjust his career; he has chosen to be a family man rather than a company man.
 
He says he’s never looked back, and I believe him.
 
End of Focused Excerpt from the book.
READ MORE...

Part 3 BLOG #5E Know Your Child: More About Law & Autism &Parenting and < My Thoughts > by Sara Luker
​
The bottom line with the Court System and how they choose the parent most advantageous for the child to spend time with… or, to be awarded primary custody… may be determined by which parent they feel can maintain the ‘best interest of the child’ while accurately advocating for them as well as for themselves; according to Byrd, Esq., K. & Payne, R. (2018).

Byrd also brings to ‘light’ the added challenge for the court of when it becomes obvious that one or more members of the child’s family, especially the parent, may also have ‘undiagnosed’ autism. The ‘Asperger’s Syndrome’ traits of seeming to be highly intelligent and ‘obsessively in need to control’ things and others in their environment.

This challenge can increase when both parents seem to demonstrate the inability to participate in a give-and-take situation, nor show flexibility instead of rigidity and egocentricity, due to their own struggle with autism. Added to that, when one or more members of the family are having their typical ‘good days’ and ‘bad days’ then the court may become concerned for the impact on the child.

< My Thoughts > “…‘good days’ and ‘bad days’”
At this point, I wish to share more about “…‘good days’ and ‘bad days’”. This is a Focused Excerpt from my Extended Book Review of –

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

Excerpts from the book (11% indicates location in the Kindle version of the book, instead of page numbers).

11%     4 red cars in a row made it a Good Day, and 3 red cars in a row made it a Quite Good Day and 5 red cars in a row made it a Super Good Day, and 4 yellow cars in a row made it a Black Day which is a day when I don’t speak to anyone and sit on my own reading books and don’t eat my lunch and Take No Risks.

< My Thoughts >     About rituals…

Wolff, Hupp, & Symons (2012) explain that ritual and compulsive behaviors may be considered ‘functionally avoidant’ because they serve the person by preventing some future advent. They believe that the person performs the ritual when they are unable to effectively communicate what they are feeling.

Christopher perceived his rituals as both creating and avoiding future events. Dr. Ronit Levy, Bucks County Anxiety Center, Newtown, PA gives us the reasoning that when persons with severe anxiety need reassurance they often times perform ritualistic behaviors. This person is helped through frequent self-determined images of things going well or terribly wrong.

24%     The next day I saw 4 yellow cars in a row on the way to school, which made it a Black Day, so I didn’t eat anything at lunch and I sat in the corner of the room all day and read my A-level Maths course book.

I have had 2 Black Days in a row I’m allowed
to do that. But it wasn’t the end of it because five days later I saw 5 red cars in a row, which made it a Super Good Day, and I knew that something special was going to happen.

End of excerpts from the book.

REFERENCES used are:

Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com
 
Wolff,J., Hupp,S., & Symons, F. (2012). Brief Report: Avoidance Extinction as Treatment for Compulsive & Ritual Behavior in Autism; Journal of Autism & Developmental Disorders; V43, p1741-1746.
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Part 2 Blog #5D Know Your Child: More About Law & Autism and < My Thoughts > by Sara Luker

Beyond the News, May 2015, talks about The State of IDEA, 40 years later. IDEA requires states and districts provide a free, appropriate public education (FAPE) to students with disabilities. It also mandates and Individualized Educational Program (IEP) for each student with disabilities. They also inform us that the number of student disability groups have declined since 2005… BUT the number of students within these groups has been on the increase by 93%. Those groups are – autism, asthma, epilepsy and diabetes. This places a larger financial burden on the states and local governments who serve this population.

Continuing, they state in this article that the Federal government will have to supply states with more than $20 billion dollars per year in additional special education funding to meet their commitment. And, that districts serving low-income students and students of color receive 10% less per student than those serving white and more affluent students.

< My Thoughts > “…receive 10% less per student…”

Added to that, my experience in teaching in a rural area, where families covered a wide range of socio-economic differences, there were other marginalizing factors. First, let me explain some of those socio-economic differences. Some families were living in a rural area by choice and some because they were able to live off the land, so to speak. Parents may have a lovely home with stables for horses, garages for expensive vehicles, and a landing strip for their private plane. Or, parents may be living off food stamps, their housing resembling more of a shed or lean-to.

There is one Pre-school through 12th grade public school and one Charter High School. Both had a Special Education Department with highly qualified Special Education Teachers, but the other professionals who served the disabled students were Public School ‘itinerant’ persons traveling weekly or monthly between city schools. That included the School Nurse, School Psychologist, Speech Therapist, Physical Therapist, Occupational Therapist, Vision Therapist, and even the School Librarian.

You may ask how or why does this matter? Well, it matters because when writing and presenting an IEP, the team members should/must include many of these people. The logistics of receiving their reports, evaluations and time available to attend and meeting coordinated with others and the parents, becomes extremely difficult. This is important because creating and tracking the students’ IEP goals require continuing input from these professionals. Try to find out how often a therapist will provide service to your child, because many large school districts don’t have nurses and therapists as ‘full-time’ staff members. Just saying.

Slade, et al. (2018) gathered information about how parents of children with Autism Spectrum Disorder (ASD) felt about the Individualized Educational Program (IEP) services for their child. They found that the heightened demand on schools to provide for the educational needs of these ASD students is often extremely challenging. The ‘cost’ to parents was them finding great dissatisfaction with the process and also with the number of years experience, or lack thereof, associated with the program’s teachers.
Parent satisfaction/dissatisfaction was tied to four aspects of the IEP process –

• Content of the IEP document
• Special education services ‘actually’ being provided
• Level of agreement between the document and actual services received
• Effectiveness of the special education (IEP) team

They comment that program violations and general parent dissatisfaction, in some cases resulted in IEP-related litigation. This litigation went forward because the child was placed before an IEP was developed by a qualified IEP team. As well as a possible ‘mismatch’ between those services stated and those actually provided. Parents also complained that they were not included in the planning, nor were they involved in the data collection. Some parents felt that their child’s behavior problems increased as a result of the poor ‘blueprint’ (IEP) which had been hastily created for their child.

< My Thoughts > “…possible ‘mismatch’ between the services stated and those actually provided.”

Even without moving to litigation, 42% of the parents surveyed felt that half or all of their child’s IEP aspects were lacking. In other words, there was no fidelity between what the IEP, a legal document, stated the child would receive in services… and what s/he actually received. I would like to add to that… there is often an ‘itinerant’ professional sent weekly or monthly to provide those services. Plus, that itinerant person may be not even be ‘highly qualified’, nor may they be doing ‘follow-up’ with the child’s Teacher of Record (TOR), nor the IEP team. Just saying.
 
And then, behavioral problems and communication problems often go hand-in-hand for the child. Are the primary specialists/therapists and other specialists/therapists collaborating so as not to be giving the child conflicting goals? In my experience, communication and behavior goals need constant follow-up, parental input, and often more than monthly revision. So, you can see how complex this whole business is. Because each child on the Autism Spectrum is SO different, it may take the approach of a warrior and sleuth. P.S. as you may have already read… each goal and goal change requires IEP revision and, and, and, notification to ALL of the child’s teachers. Smiles.

Byrd & Payne (2018) say that the emotional impact of parenting a child with autism is compounded by the numerous practical demands placed on families by therapies, interventions, financial burdens, medical care, and reduced work opportunities. This may be more harmful than the child’s cognitive or behavioral limitations.

Byrd goes on to say that parents of a child with autism are nearly twice as likely to divorce as parents without a child with autism. That risk of divorce remains high throughout that child’s lifetime, extending into adolescence and young adulthood, according to research. Of course they state that the families individual ability to show resiliency is a determining factor.

The Judicial case law address the cases where autism spans parental rights, as well as both parents being treated fairly and equitably while preserving the best interests of the child are in the courts hands when divorce is involved. The courts may also insist that parental support continue beyond the age of 18 years. In that case, the courts may also deem that the juvenile has the capacity to participate in any hearings. The courts may have a greater say in ‘overnight visits’, quality of and moving of parental residences.

Other considerations for the court are shared custody and whether both parents can provide proper parenting and meet the child’s needs. Considerations for parenting the child with a disability or multiple disabilities include… but are not limited to which parent can best deal with the child’s:

• Sensory defensiveness regarding daily living routines, such as hygiene.
• Need for protection when the child may pose a danger to themselves.
• Sudden delays caused by the divorce or other factors.
• Autism as well as the challenges of the divorce. And to seek professional guidance, as needed.
• Need and the parents’ need to consistently follow through with necessary programs and services.
• Ability to continue to participate in the any recommended behavioral interventions/programs.
• Need for a parent most able to self-educate and to advocate for the child.
• Develop both emotional and psychological resilience. And a parent who can ‘handle’ the daily stress of parenting.
• Be provided with a quality special education setting and least restrictive environment.

< My Thoughts > “…‘overnight visits’, quality of and moving of parental residences.”

At this point, I wish to share how one family handled this type of situation. This is a Focused Excerpt from my Extended Book Review of – 3500: An Autistic Boy’s Ten-Year Romance with Snow White, by Ron Miles; eBook 2013 Edition; with < My Thoughts > by Sara Luker
 
Excerpts from the book – (60% indicates location in the Kindle version of the book, instead of page numbers).
 
6%       The final blow to our marriage was my father’s death. I went into deep depression, and I am sure I was both a bad husband and a bad father for months. It would take over a year to finalize, but our marriage was over.
 
Although we had the standard court-ordered parenting plan that said something like “one weekend per month, two weeks in the summer”, in reality we fell into a rhythm of Ben being with his mom during the week and with me on the weekends.
 
22%     I remembered a trip we had taken Ben on to the Magic Kingdom. His mother and I were stunned at how much he was enjoying the trip. There was even a time when non-verbal Ben spontaneously called out “Snow White”. That was the moment when I knew right down to my core that Walt Disney World was the single biggest piece of magic that had ever entered Ben’s life.
 
23%     Spring turned into summer, and the difference between Ben-At Disney and Ben-In-The-Real-World was very stark indeed. The difference between his maddening behaviors and him skipping his way through the Magic Kingdom and I began to wonder if maybe he actually belonged there.
 
24%     I tentatively brought it up with his mother… Should we uproot both households and move to the opposite corner of the country so that our profoundly disabled child could go play in the Magic Kingdom year round? It seemed ludicrous, yet neither of us could get it out of our heads.
 
The only rational thing to do would be to plan a second vacation to Walt Disney World and see if he showed the same response again. If he didn’t then no harm, no foul. We would have an answer and abandon the idea of the move. If he did, then we would start making concrete plans.
 
26%     Naturally, the universe does not like it when life gets too easy or too predictable. I was on a direct course to moving 3,000 miles across the country to go live in a theme park. So that’s when I fell in love.
 
For several years after my divorce, I didn’t even date. Then I invited Kris, whom I had met through friends, to a company party. She said it was love at first sight for her. It took me a while to catch up. But months later, I left my new love Kris behind in Seattle and headed to the airport with my son and my ex-wife. Weird, right?
 
42%     Ben’s mother had already found a new home directly to the northeast of the Disney property. I opted for an apartment to the southwest of Disney.
 
End of excerpts from the book.

Note: Complete Extended Book Reviews with < My Thoughts > by Sara Luker may be found on my website www.sarasautismsite.com by book title.

REFERENCES used are:
 
Byrd, Esq., K. & Payne, R. (2018). Lighting Up Family Law in Blue: Autism’s Impact on the Family & Family Courts. KBYRD.JDWFU2013@gmail.com.
 
Slade, N., Eisenhower, A., Carter, A. & Blacher, J. (2018). Satisfaction With Individualized Education Programs Among Parents of Yound Children With ASD; Exceptional Children; V84:3, p242-260.
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