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. (2014) say indications are that intolerance of uncertainty plays an important role in sensory activity. That sensory activity can be ‘heightened and unpleasant’ and/or alternatively ‘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.”
 
 < My Thoughts >      What I am offering here is a powerful story which may capture at this 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.
 
9%       It is challenging for those who focus on the clearly visible impairments to imagine that some of these hand-flapping, string-waving children might understand normal speech and think internally.

==============
 
a. Sensory interests…
 
Sensory interests, within themselves, according to Zachor & Ben-Itzchak (2014), mean that persons having ‘unusual sensory interests’ were associated with more severe autism symptoms. Those persons, along with more severe symptoms, were reported and observed to have lower cognitive ability and lower adaptive skills. These were thought to be the types of autism involving numerous developmental domains and having unique neurobiological origins.  

Thus, scoring one or above, to at least one of the Autism Diagnostic Interview-Revised (ADI-R) test measurement items on the severity scale. And, having a ‘negative’ or ‘emotional’ sensory reaction rather than a ‘fear’ response.
 
Bogdashina & Casanova (2016) differentiate between ‘negative’ and/or ‘emotional’ sensory reactions with this statement –
 
During a ‘negative’ sensory reaction, the body reacts as if it is being attacked or bombarded. This results in negative biochemical changes to the brain and body. Which in turn may start shutting down sensory channels; resulting in such physical symptoms as headaches, anxiety, panic attacks, or even acts of aggression.
 
While during an ‘emotional’ sensory reaction, there are those individuals with seemingly ‘emotional blindness’. This seems to be an emotional sensory state which triggers certain behaviors. In addition, the person may often interpret others emotions as their own.

A state of over or under arousal may eventually balance between these two, changing within the persons’ age and developmental lifetime. It may be that with the child, abnormal sensory functioning leads to secondary abnormalities in the brain development, because of distorted sensory input or lack of sensory input.
 
Zachor & Ben-Itzchak (2014) discuss ‘negative sensory responses’ and ‘unusual sensory interests’ as two different sensory abnormality types. The first type – an ‘idiosyncratic negative’ sensory response. An abnormal emotional sensory reaction, other than fear, which is specific to a certain person and a certain sensory stimuli.

The second type – ‘unusual sensory interests’ refer to an unusually strong or repeated reaction to, or seeking of, stimulations from the basic sensory input. They note that a criterion of ‘unusual sensory interests’ has been added recently to the new DSM-5; and that the ‘emotional reaction’, other than fear response should have lasted for at least 3 months, in clinical presentation.
 
More recent studies, such as Kraper, et al. (2017), found that despite average-range and higher cognitive abilities, some adults with ASD significantly struggling to engage in daily activities. There does seem to be a 7-16 year lag behind chronological age expectations, due to poorer adaptive functioning. This adaptive functioning referring to behaviors related to personal independence. When this gap occurs, some young adults tend towards at least one episode of depression, and/or some social anxiety; depending on their level of self-awareness.
 
Warber, tells us that when an individual has trouble with a persistent unhappy mood, as well as an inappropriate emotional response and behavior, the condition can affect social interaction, communication, and learning. Schools may use the term Emotional Behavior Disorder (EBD) when considering class placement within the school system. This is based on criteria from the Individuals with Disabilities Education Act (IDEA); which describes the characteristics of the student as having –

• Learning problems that are NOT due to intellectual, health or sensory issues
• Problems with social interaction and appropriate behavior, and/or depression
• Inappropriate feelings, behavior or responses to normal situations
• Tendency to develop fears or negative physical reactions to school problems or family issues

Retrieved from –  https://autism.lovetoknow.com (2019).

Sarris (2012) reminds us that it can be these same young adults with rigid sensory interests, inflexible in their thinking, who enjoy activities or develop relationships based on their special interest or topic. Common interests for this group include animals, computers, music, science, and science fiction. Also, that it’s a special way that parents and other supporters can relate to all ages through their ‘favorite things’, building a strong and lasting connection throughout a lifetime.
 
REFERENCES used here are:
 
Bogdashina, O. & Casanova (2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
 
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.
 
Kraper, C., Kenworthy, L., et al. (2017). The Gap Between Adaptive Behavior & Intelligence in Autism Persists into Young Adulthood & is Linked to Psychiatric Comorbidities; Journal of Autism Developmental Disorders; V47, p3007–3017.
 
Sarris, M. (2012). Behaviors that Puzzle: Repetitive Motions & Obsessive interests in Autism; Retrieved from online at – https://iancommunity.org/cs/challenging_behaviors/repetitive_motions_and_obsessions.
 
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; Vol.45:4; p943-952.
 
Zachor, D. & Ben-Itzchak, E. (2014). The Relationship Between Clinical Presentation and Unusual Sensory Interests in Autism Spectrum Disorders: A Preliminary Investigation; Journal of Autism Developmental Disorders; V44, p229–235.
 
===============   

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.”
================
 
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 – (24% indicates location in the Kindle version of the book, instead of page numbers).
 
24%       Joe and I have incorporated our psychologist’s concept of “low and slow” into our parenting approach.
 
I prefer “high and fast” myself.  It’s taken a fair amount of practice for me to slow down and lower my voice when I’m agitated.  All of us are slowly stretching.
 
Low and slow means pretty much what it says: keep your voice low and your words slow.
 
< My Thoughts >         “I prefer “high and fast” myself.”
 
Van Steijn, et al. (2012), suspect that Attention Deficit Hyperactivity Disorder (ADHD) symptoms are “obtained from the parents and were related to their offspring.”  Those parents genetically “influence patterns of inattentiveness and hyperactive-impulsive symptoms in their offspring as well.”  Never a point of blame… but, only a point of information. Just saying that one needs to stop the ‘zoomies’ long enough to eat, drink, and learn new skills.
 
23%       I started to observe his regulation more closely and took note of when his body seemed calm and his mind more open... (…as opposed to his looking and feeling distressed).
 
Jack adapts to his surroundings and learns best when his body feels ready…
 
…when the ants of self-stimulation are quiet and his mind is calm.
 
Exercise and movement are essential for him to feel regulated.
 
If we notice he has the “zoomies” and needs to stim (Self-stimulation), we direct him towards the mini-trampoline, inside…or to his bike, outside.
 
Sometimes I just wanted to let him watch those Baby Einstein movies he loved so much, to be and let be.  And sometimes I did.
 
< My Thoughts >             “…influence of gender on ADHD…”

As an educator, not often… but there were times when first meeting mom or dad, I found my inner voice saying… “Oh, hello there… Johnny or Susie seems to be a chip of the ole block.” Calling upon my restraint not to ask that parent for “quiet feet” or ” …would you prefer to walk around while we talk?” Smiles. 

In a review of an earlier study (2012), van Steijn, et al. were not convinced of a genetic connection or of the environmental influence of being born of, or raised by, parents with ADHD. One of the reasons they say was that none of the studies, so far, had determined whether the ASD, ADHD was influenced by the child’s gender or the parent’s gender. These authors suggested further studies might look for participants with siblings who had also been diagnosed with both ASD & ADHD.

Retrieved from: How Girls with ADHD are Different, by Rae Jacobson; ChildMind.org –

“I’ve always been a space cadet. Prone to lateness and losing things, brought crashing back from daydreams by people clapping their hands in front of my face. “Earth to Rae,’ they’d say exasperated.” “I’m not normal enough to be a normal person.”

“Years later, a few months after my 21st birthday, that ‘something wrong’ finally got a name – attention deficit hyperactivity disorder.’ Why did it take so long?”

Hinshaw & Schelffer (2012) tell us that “We were initially taught that ADHD was a boys’ phenomenon. But, three decades later we know this is an equal opportunity condition. Hiding in plain sight are the girls who turn their anger inward. Knowing that it is more important to be pretty, empathetic, demure, and polite.”

“While failures become evidence of self-convicting charges – I’m not smart. I’m a failure. I don’t belong.” These thoughts take their toll with girls who are significantly more likely to experience major depression, anxiety, and eating disorders than girls without.”

Rommelse & Hartman (2016) found that genetic influences on behavior are not all constant during development and that environment can also be an influence. They say that both ASD and ADHD symptoms, although separate domains, focus beyond childhood. That some genes potentially related to childhood ADHD have been replicated in adults. And, it is believed that smoking as an adolescent can impact the future development of ADHD.

While Bink, et al. (2015) say studies show that treatment for ADHD may work differently in some adolescents with both ASD and ADHD. They think that this may be due to improved attention to task performance in those with ADHD.

And, Adamo, et al. (2014) claim that determining whether the person has both ASD and ADHD has to do with both the frequency and the fluctuations of the behavioral activity.

But, Johnson, et al. (2015) advise that symptom of both ADHD and ASD likely emerge from a complex interaction between emerging neurodevelopmental vulnerabilities and aspects of the child’s prenatal and postnatal environment.

Along with everything else, Johnson, et al. focused their review on identifying the earliest expressions of risk. Added to the core domains of brain size and structure, were motor skills, sensory processing and perception, attention, social interaction and communication, as well as temperament.

More of… < My Thoughts >         "…about at-risk, behaviors…"

As a parent of Sonny and as a teacher in the classroom, observation, intervention, and dealing with the symptoms of behavior becomes sort of a reaction based on hyper-vigilant behavior of my own. When a child’s behavior is unsafe to self and others, then one must first react immediately. Then later share data which will help discover the causal effect.

So I liked when Johnson, et al. felt that from a basic science perspective it becomes hard to untangle these factors and may clinically restrict us to treating symptoms rather than finding a cause for these disorders. And, that they seemed to consider ‘familial risk’ in broad terms. Bottom line here for parents, clinicians, and educators – without a ‘diagnosis’, be it ASD or ADHD, there most likely will be NO SERVICES for the child.

REFERENCES used here are:
 
Adamo, N., Huo, L., Adelsberg, S. et al. (2014). Response time intra-subject variability: commonalities between children with autism spectrum disorders and children with ADHD; European Child Adolescent Psychiatry; V23; p69-79.
 
Bink, M., van Boxtel, G., Popma, A. et al. (2015). EEG theta & beta power spectra in adolescent with ADHD versus adolescents with ASD + ADHD; European Child Adolescent Psychiatry; V24; p873-886.
 
Hinshaw, S., & Schelffer, R. (2013). The ADHD Explosion, Myths, Medications, Money & Today’s Push for Performance;  Oxford University Press.
 
Johnson, M., Gilga, T., Jones, E., & Charman, T. (2015). Annual Research Review: Infant development, autism, and ADHD – early pathways to emerging disorders; Journal of Child Psychology & Psychiatry; V56:3, p228-247.
 
Rommelse, N., & Hartman, C. (2016). Review: changing (shared) heritability of ASD & ADHD across the lifespan. European Child Adolescent Psychiatry; V25; p213-215.
 
van Steijn, D., Richards, J., Oerlemans, A., et al. (2012). The Co-Occurrence of Autism Spectrum Disorder and Attention-deficit/Hyperactivity Disorder Symptoms in parents of children with Autism or ASD with ADHD; Journal of Child Psychology & Psychiatry; V53:9, p954-963.
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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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READ MORE... Click here =>

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).
READ MORE - CLICK HERE 

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.
============

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.
===========================         

​Blog #5D Know Your Child: More About Law & Autism -

Understanding the Law regarding Autism is tedious. We will start with how the laws work in states, schools, and communities. While the Federal Government mandates laws which must be followed, individual states determine how, when, where, and why they will or will not comply.

According to Autism & Insurance Coverage: State Laws, 8/8/2018, retrieved from the follow website –
http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx there are 46 states and the District of Columbia which have laws that require insurance coverage of autism. Other states may have limited coverage under Mental Health or other laws. Some 12 states have waivers which make Medicaid funds available to assist individuals with autism, such as from the Easter Seals organization. Restrictions may apply, such as – insurance coverage until the age of 18, or 22 in some states; and only if the individual is enrolled in an approved school.
 
Bilaver, et al. (2015) tell us that FAPE, Free & Appropriate Public Education was meant to strengthen public school capacity to deliver services to those families and individuals unable to access needed services at home.

But according to this study, services still fall short due to specialists being overworked with heavy caseloads. Highly trained specialists providing intervention services can be licensed speech therapists, occupational therapists, behavior therapists, and those providing social skills training.

In their study, Turnbull, III, et al. (2002) answer questions regarding the federal special education law IDEA, Individuals with Disabilities Education Act renewal in March 1999. The ‘new’ IDEA is outcome-driven. That is that Local Education Agencies, LEA’s, are required to assess and ensure the effectiveness of efforts to educate children with disabilities. Providing seamless provisions and procedures, nondiscriminatory evaluations, linked to the IEP, Individualized Educational Program and LRE, Least Restrictive Environment, and including high school transition to post-secondary activated after high school. Both statute regulations by the U.S. Department of Education; plus the regulations, rules and procedures implemented to achieve goals intended by Congress, carry the force of law.
 
The IEP Team is required to consider if appropriate strategies, including positive behavioral interventions and supports address that behavior which are both state-of-the-art and nonaversive. In order to qualify for federal funding, the state law must meet the requirements of the federal law and may exceed those federal minimums.

The Section 504 Plan and ADA, Americans with Disabilities Act generally include protection of reasonable accommodations to persons with disabilities to attend a public facility or program. They also provide that a school must have a wheelchair ramp or other reasonable accommodations to allow an individual to enter and exit the school building easily and safely. Students themselves may now be included in all decisions and determinations regarding their education, as appropriate, and included in all ongoing planning, including Transition Planning.

< My Thoughts > Transition Planning  – 

In many states, schools start children with special needs on a Transition Plan to be implemented in the last years of public schooling. Students can attend school until age 21 years (or, for some... until 22nd birthday). Look into how your state implements these plans. Some start as soon as the child is identified in the system. What that may mean is that the child learns the life skills as well as the academic skills they will need after the public school program ends and their life in the community begins.
 
Of course as with any plans…there’s good news and bad news.The good news is that students are put on a special track which supports their abilities and talents, but this should be evaluated every few years.The bad news is that if future evaluations don’t occur and the child either progresses or regresses beyond the initial plan, then the outcome may be drastically different. 
 
For example, I have had students who would not have been put in computer classes because of much earlier evaluations. But when they hit middle school, for whatever reason, their brain and hand-eye coordination had improved to the point where learning to keyboard on the computer was very doable. And, a skill which can take them far.
 
I would offer the computer at the beginning, the middle, and the end of each semester to my students.  I didn’t always write it as an instructional goal, but I had a small and very coveted computer lab in my classroom where the opportunity was ever available. I also invited students to dictate their stories and eventually their essays to me while I typed them, so that they could get a feel for how keyboarding could extend their independence and improve their learning skills.
 
This can be integrated with Letterboard skills and with Assistive Technology which is available on all ability levels, from voice activated to Braille keyboards, and everything in between. 

Turnbull, III, et al. (2002), continue. First requirement is that it will be determined whether or not a child qualifies for services under IDEA. Also, does that child qualify for the enumerated disability? Second requirement, does that child need special education because of his or her disability? Note, in some states, the child may have to ‘requalify’ for services after the age of 3, or after being reevaluated under the new DSM- 5, Diagnostic & Statistical Manual of Mental Disorders.

Also, schools are prohibited from instating an individual’s removal that constitutes a ‘change of placement’ if it is determined that the child’s behavior is not a manifestation of the child’s disability. The IEP team would be required to reevaluate the child’s IEP and impending FBA, Functional Behavior Assessment or BIP, Behavior Intervention Plan before a ‘change of placement’ is determined.

< My Thoughts > about IEPs & BIPs  – 

Anytime and every time your child has been given a Behavior Intervention Plan, it should become part or their current IEP. Also, make certain ALL of the child's teachers know that it is in place... and, what their part is in the implementation of that BIP. In other words, the Art Teacher should be following the plan strictly, as well as all other... including the Lunch and Recess personnel and substitute personnel. 

Here's an example of what can go terribly wrong for your child...

Building in Circles: The Best of Autism Mom by Elizabeth W. Barnes; eBook 2014 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).
 
60%     "Wait, What?" –

(Sometimes I like to drop by Navigator's school to visit his classroom)  First, I dutifully go to the school office and sign in and get a badge so I am an “official” visitor at the school.

…while I was signing in, my son walked into the office, by himself. He was supposed to be in class, what was he doing in the office?

One of the assistants asked him why he was there. He explained that he had been misbehaving in class and the teacher had sent him to the office.

Wait, What?  There is specific language in the IEP* that he is NOT to be sent out of the classroom for his behavior.

41%     The “Specials” Teacher had sent him out of the classroom. Why isn’t the Specials Teacher following the IEP?

A couple of days later I got notice that an IEP meeting had been set, including the Specials Teacher.

42%     Wait, What? Why were we having an IEP meeting?

The meeting came and I learned that the Specials Teacher had not been given notice of the relevant accommodations in the IEP related to my son.

…None of the Specials Teachers had been given that information.

“Wait, What?” How can they do their jobs if they don’t have the information they need?

43%     The meeting went well as far as my son is concerned. The Specials Teacher now has the knowledge and tools needed to manage my son’s behavior in the classroom.

Ironically, this meeting took place on the second to last day of Autism Awareness Month.

< My Thoughts >   “None of the specials teachers had been given that information.” “Autism Awareness Month”

My motto (one of them) is never to assume anything! As parents and as teachers, immersed in the world of autism, we sometimes tend to ‘assume’ that everyone out there is as ‘consumed’ with the subject as we are. That ‘they’ are operating from the same knowledge base that we are. Not so! And, many people prefer not to think about anything that deviates from the ‘norm’, especially ‘autism’. Just saying.

End of excerpts from the book.

More Turnbull, III, et al. (2002), the IEP Team is also required by law to give the parents a Parental Notification Letter in advance of any pending meeting involving themselves and their child. Parents have the right to reschedule, invite others, and make requests. This is all clearly stated in the Notice of Procedural Safeguards & Parental Rights booklet, also required by law to be given to parents, prior to the scheduled or proposed meeting set by the IEP Team.
 
IDEA mandates that there may be no classroom placement nor programs are to be entered into, until the child is evaluated according to nondiscriminatory evaluation requirements. There are other statutes providing the child be awarded IEP development and assessment by personnel whom have ‘special knowledge’ regarding the disorder the child is being tested or receiving services for.
 
Another important part of IDEA is the provision for the child to receive programs and have placement in a LEA, Least Restrictive Environment. This means, generally that persons with disabilities are to be ‘fully’ or ‘partially’ integrated to varying degrees, and with modifications and accommodations, into the general curriculum. IDEA states that ‘full’ integration is preferred over ‘partial’ integration and ‘partial’ integration is preferred over ‘segregated’ service-delivery. Studies say that students who are severely disabled still benefit from interaction with their nondisabled peers.
 
Other types of services must be made available to the child. The need for Assistive Technology, augmentative, or alternative devices; or any other supplementary aids deemed necessary, is to be provided as an educational benefit. During extended school breaks, individuals must receive ESY, Extended School Year services and necessary transportation and specially trained aides, as needed at no cost to the family. This is when the child is currently enrolled in a school or program and they are being served by that school or program; it must also be part of their IEP. An IEP is always a ‘legal’ document.

< My Thoughts > Extended School Year Services – 

ESY is so important because it doesn't take much for some students to lose skills over a 2 - 6 week period of time away from the classroom. Many school districts try to eliminate this service by stating that the student has met their goals, during the school year, and don't need to progress further until the next school year. First of all, the child has legal right to those services, transportation, nutrition and lunch provisions, as well as any after - school recreational program in order to keep from losing skills both academic and social. 

Secondly, the misconception that ESY is just a baby-sitting service costing taxpayers ridiculous sums of money is false. I often taught during the school breaks because my kids needed the continuity and it was such a time of growth for them that I wanted to be there to guide that growing period. Also, it was an opportunity to introduce some of the topics student would be learning in their next school year. Every lesson, every day was IEP goals oriented and grade-level-curriculum based. Sometimes disguised as a nature walk or an art class, or building a bot. Smiles.
 
The 1997 amendments to IDEA also state that public agencies must be ‘first-payors’ and others as last resort. Also that private, parochial, charter and other private sites can contract with other agencies to provide services. If a disabled child’s parents have to remove their child from a public school because that school fails to provide FAPE, then parents may start a ‘due process’ hearing and possibly be awarded reimbursement for any costs. (Note: Due Process is every citizen’s constitutional and legal right to be treated fairly – basically saying. But, if  the parents do not win, they must cover the legal fees involved in filing and pursuing the Due Process action.)
 
REFERENCES used are:
 
Bilaver, L., Cushing, L., & Cutler, A. (2015). Prevalence & Correlates of Educational Intervention Utilization Among Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders V46; p.561-571.
 
Turnbull, III, H., Wilcox, B., Stowe, M. (2002). A Brief Overview of Special Education Law with Focus on Autism; Journal of Autism & Developmental Disorders V32:5; p.479-493.

I Know You’re In There: Winning Our War on Autism by Marcia Hinds, 2014 eBook Edition; Extended Review with < My Thoughts > by Sara Luker
 
Excerpts from the Author’s Note –

(1% indicates Focused Excerpt location in the Kindle version of the book, instead of page numbers.)

1%       From: Marcia –
 
I am an expert at only one thing and that is being Ryan’s mom.
 
Even so, I made a lot of mistakes along the way. 
I fought doctors when they were right.
I went along with snake oil salesmen when I shouldn’t have.
 
The thing I did right is that I never gave up.
 
When it comes to the treatment of autism one size does not fit all. You must find your own path and follow it, and God help anyone who gets in your way.
 
End of excerpts from the Author’s Note
 
< My Thoughts >   To really appreciate how open and candid, approachable and helpful Marcia Hinds is, check out this video… Smiles.
 
AutismOne Media                   Is recovery possible? Speaker: Marcia Hinds
Published on May 30, 2018
https://www.youtube.com/watch?v=18v6W03456Q
 
Excerpts from the Forward by My Son, Ryan Hinds –
 
2%       From: Ryan –
 
My mom asked me to read the book to make sure I was okay with the things she wrote. I wish I could forget all the horrible things that happened and everything to do with autism. Who really wants every detail of their childhood out there for the world to see? 
 
Some will say I never had autism or maybe that I was only mildly affected. I wish that were true.  …I know my story is important to help others realize this disease is medical, treatable, and surmountable. I was lucky I had parents who fought back.
 
End of excerpts from the Forward by My Son, Ryan Hinds
 
Excerpts from the book’s Preface –
 
2%       Ryan graduated magna cum laude and went on to earn a master’s degree with distinction in engineering. NASA awarded him a scholarship for his post-graduate studies as well as a paid summer internship. Ryan is presently a systems engineer at a major aerospace company. He lives in his own apartment just steps from the Pacific Ocean. He goes out with friends and surfs anytime he can. Sometimes I have to pinch myself, because what I wanted most for him actually happened. He is happy, has a great group of friends and a very active social life.
 
3%       One of the hardest things to deal with when you have a child with autism is that you don’t know the rest of the story. You have no clue how things will turn out. There is no magic pill to cure our children. Trust me, I searched everywhere for it. But, I did find many snake-oil salesmen with the latest cures who took our money and then asked for more. My husband and I had to choose. We could let Ryan drift forever into his own world or drag him kicking and screaming into ours. Choosing was the easy part. How to accomplish his recovery was our twenty-year challenge and what this book is about.
 
End of excerpts from the book’s Preface
 
Excerpts from Marcia’s book –
 
4%       I worried something might be seriously wrong with my son. He confused and frightened me when he did these crazy things. Impulsivity and rigid response weren’t unusual for Ryan…I had to save him from himself. No one ever told us autistic children have trouble moving from the now to whatever happens next. 
 
At other times, Ryan wowed me with his intelligence. I knew he was smart. At only two, he spent hours playing computer games and could operated any piece of electronics in our house. He knew all his letters and numbers. Even though he couldn’t say them.
 
When it came to anything that captured his interest, his levels of concentration and comprehension were phenomenal.  But his interests were limited and a bit odd. Ryan loved objects, but did he love us?
 
What I didn’t know was how many other parents were also having similar thoughts about their unusual children, and that we were already card-carrying members of the A-Club.
 
Most of our days were spent trying to figure out what Ryan wanted or needed.
 
Nothing worked. We were like contestants on a game show where only Ryan knew the rules. 
 
I couldn’t listen to the things the experts told me Ryan would never do. I knew Ryan was in there. There were times I saw him clearly. Other times, I only caught a glimpse of the kid he would someday become. I couldn’t give up on him. I wasted valuable time not getting him the help he needed.  If you think there is something wrong, there probably is. 
 
Like your shadow, autism is yours for life. To complicate things further, a child may have more than one diagnosis. Children with autism have multiple medical conditions…some people in the field are starting to call it “autisms.”
 
< My Thoughts >   “Children with autism have multiple medical conditions…”
 
Our Sonny was soooo clumsy. He would stumble, drop down for no reason, then pop-up and stagger off. It wasn’t until he had a Gran Mal seizure that we found out that he had epilepsy. Then it was several years before a very smart neurologist told us that his staggering around and dropping down were ‘atypical absence seizures’ and ‘atonic’ or ‘drop’ seizures, part of a Lennox-Gastaut syndrome. Who knew?
 
According to Crumrine (2001), ‘Atypical absence seizures’ look as if the person has just ‘checked-out’ for a second or two. They will not respond to environmental stimuli. An ‘atonic seizure’ is a brief loss of posture. Looks like a head nod or more observable, a fall to the ground, or a stumble as knees give out. She also describes this Lennox-Gastaut syndrome as having at least two seizure types, including ‘tonic’, ‘atonic’, and/or ‘atypical absence seizures’; along with ‘cognitive impairment’ and often times lack of the ability to learn language, or being nonverbal.
 
Some nights, Sonny would fall out of bed, become incontinent, and sleepwalk. This too, was part of the syndrome. Dr. Crumrine refers to this as possible ‘tonic’ seizures which occur during nighttime sleep. Another ‘nonconvulsive’ observable events are sudden changes in ‘mental status’, eyelid fluttering, facial flushing, staring at hands and/or feet, associated ‘drooling’ and seemingly to be in a ‘stuporous’ state.
 
This is typical for Sonny. He can be right in the middle of something he has done a million times and then looks at you as if he doesn’t know who you are, where he is, or what he’s doing. We tell him, “Hey, that was a seizure… you’re okay now.” That seems to satisfy him and we guide him back to the activity he was interrupted from.
 
The doctor tells how a Ketogenic diets of high-fat, low-carbohydrate/sugar-free foods can serve as an additional treatment, but not ‘first-line’ because meds are needed for that. She goes on to say that “Lifetime care for these children and adults needs the combined support of services from nurses, physicians, teachers, social workers, psychologists, family and friends.” Whew!
 
Sonny was fortunate to have a neurologist who recognized his syndrome, knew it wasn’t all autism. He also knew that the FDA had just approved a new drug for patients with Lennox-Gastaut syndrome. Lucky for us, the planets had aligned and with Sonny now at age 29 years, our lives became easier with this neurologist and this medication.
 
Yet another clinical review states that while the subject remains poorly understood and controversial, there seems to be a ‘relationship’ between autism, epilepsy, and regression. I mention this, and I’ve carried on a bit about epilepsy only because I wish to make a statement about why sometimes it’s not always ALL AUTISM.
 
The findings of a 2017 study conclude that other things like motor and speech development are commonplace with autism. But also, psychiatric symptoms: Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, conduct disorder, oppositional defiant disorder, generalized anxiety, depression, bi-polar, and even schizophrenia can ‘co-occur’ with autism. Just saying.
 
32%     Doctor Goldberg told us on that first visit what I already knew to be true. Ryan didn’t really have autism, even though it sure looked like it. I didn’t really understand what Neuro-Immune Dysfunction Syndrome (NIDS) meant back then. I didn’t care. I had HOPE! My kid is sick and there is hope that he can get better. Finally, I found someone who not only wanted to help Ryan, but also had a way to do it.  And he didn’t think I was crazy – at least not yet.
 
33%     It was the NIDS approach combined with intensive rehabilitation that helped my son recover from autism. Recovery began by rebuilding his immune system. But just doing the NIDS protocol without any intensive rehabilitation wouldn’t have been enough. Years of behavioral and educational interventions were necessary to correct Ryan’s deficits in speech and social skills.
 
36%     Dr. Goldberg had strong views on diet then, and his diet restrictions have become even stronger over the years. He was adamant that extreme diets don’t cure autism and Is equally adamant that his dietary requirements are not extreme. 
 
In my Doctor Mom opinion, diet is not the only thing that we need to control to help them heal. Environmental allergies to pollen and other things are sometimes overlooked. Are you using a laundry detergent they are allergic to? Is there mold in your basement” the things that can affect their immune system are endless.
 
37%     Ryan’s treatment with Dr. Goldberg lasted many years, and over these years Dr. Goldberg and I had intense arguments. Over the years of our relationship, many times our conflicts have revolved around his determination to cure Ryan one-step-at-a-time and my determination to make him fix Ryan NOW!
 
39%     When my NIDS-treated kid started to wake up and develop again, ABA compliance training and consistent parental guidance were needed to teach consequences for inappropriate behavior. Discipline for Ryan at age five was similar to discipline for a typical two-year old. You have to meet your child at the age they are developmentally.
 
49%     Restricted interests. What so many teachers don’t realize is the learning potential those annoying interests hold.  Pam designed speech drills about sharks. He loved the computer, so she used it to teach the importance of waiting for his turn.
 
51%     Children live in two worlds…home and school. At home, Ryan always had me and the rest of his family to guide and protect him. At school…if you want to be a successful advocate for your child, you have to know about IEPs (Individual Education Plan).
 
52%     The autism label isn’t what it used to be. I didn’t want to believe Ryan had autism and I didn’t want anyone to ever say or even think he did. Pervasive Development Disorder (PDD) sounded so much better to me than autism. That was a big mistake on my part. The autism label opens the door to get the services you child needs. The term ‘NIDS’ won’t do it.
 
< My Thoughts >   “The autism label opens the door to get the services you child needs.”
 
Ha, et al. (2012) remind us that ‘misdiagnosis’ was prevalent in the late 1900’s and early 2000’s, and ‘over-diagnosis’ is now the ‘great concern’ of parents and some professionals, lack of ‘early identification’ does not serve us well either. They say that in countries like Vietnam, health service providers are forced to adopt a pragmatic response in order to meet the needs of the children and parents seeking assessment and diagnosis.
 
Yes, autism is global. Private intervention centers in Hanoi are few, but they are available to a minority of wealthier families. While, they continue, rushed diagnosis with assessment tools used from Western countries sometimes resulted in and inaccurate diagnostic label, services were not available without autism identification. In addition, they believe that an accurate count was necessary in order for the country to provide better assessments, diagnostic and therapeutic services.
 
Moore (2008) asks “How much difference does a ‘label’ make?” Some parents don’t want their child considered ‘handicapped.’ “I think autism is exactly that, a ‘handicap’. A difference that disadvantages you when playing the ‘game of life.” I don’t like ‘disabled’ because that suggests you were once ‘abled’, but now you are not. I don’t like autism referred to as a ‘disease’ because it’s not catching.
 
“I am convinced, then of the accuracy of their diagnoses. We openly use the word ‘autistic’ at home. I have never hidden it from them, nor have their teachers. Having my boys ‘labeled’ has many practical advantages. None of the sources of help would have been available to me if the boys had not been formally diagnosed. And, it helps me explain why 4-year-old Sam is still in nappies. Or, why big brother George sometimes twiddles his fingers in front of his eyes.”
 
52%     Today, the DSM-V (that big manual used to define mental disorders) has simplified the diagnosis to Autism Spectrum Disorder. You either have it, or you don’t. However it still doesn’t work that way in IEP meetings.
 
The IEP includes the district’s idea of a Free and Appropriate Public Education (or FAPE). Remember you don’t have to accept the entire IEP proposal. You can consent to part of the IEP and reject other sections. You can do this by adding an additional page after the signature page. There, simply list the items you accept… Provide the team with dates you are available to meet again to discuss it…
 
< My Thoughts >   “IEP changes… legal document… time sensitive… team members… “
 
As a special education teacher, a parent of an autistic child, and a special education team member, I could go on and on about a student’s Individual Education Plan. Here is a ‘cut-to-the-chase suggestion from this website… www.understood.org/IEP_Goals. They suggest that you measure your child’s IEP Goals against the acronym SMART, which stands for Specific, Measurable, Attainable, Results-Oriented, and Time-bound.
 
The goal for Reading class would say: Name will be able to read grade-level non-fiction stories at ‘so-many-words’ per minute with 2 or fewer errors. Or, for math class: Name, with the aid of a simple calculator will be able to add and subtract 3-digit numbers, with 80% accuracy. And, by mid-term, Name will interact appropriate during a group activity, in 4 out of 5 opportunities.
 
Added to that, I usually provided a chance for a follow-up meeting to review goals in six weeks, or so. That way if the calculations were way off, between the child’s ability (and motivation) and what was actually probably going to happen… then we could change things up. Smiles.
 
52%     When things are in writing and documented, it usually prevents misunderstands about what “…is necessary to meet your child’s educational needs.” Before each IEP meeting I would send the entire team a note or email about what Frank and I though Ryan needed to be successful at school. They were never caught off guard. My notes made everyone on our IEP team think outside the box. For example, when Ryan needed adaptive physical education, we asked if these services could be delivered before school instead of interrupting his school day.
 
< My Thoughts >   “…these services could be delivered before school.”
 
In many school districts, qualified persons who provide specialized services are itinerate. They serve many students in many schools throughout their day. In other words, they are on a very tight and demanding schedule. Chances are that to ask them to rearrange their traveling schedule to provide services before the school day starts may be unreasonable.
 
Another problem is that when students are receiving services before the school day starts it makes them stand out. And, not in a good way. Thinking that I had the perfect solution for keeping a middle school student in the classroom, I asked the Occupational Therapist to hold their session on campus before school. This was a big mistake. My student was seen by his peers as different from the rest of the crowd. Prior to that, students weren’t really aware that he needed help. Sometimes, you just can’t win… but, as Marcia believes… that does NOT mean you stop trying.
 
57%     Facilitating Ryan’s school friendships was probably my smartest move. Many moms of children with autism recognize the trade-off of doing all the work to organize and implement a play date in order for it to happen.
 
58%     Anything we thought he might struggle with at school, were learned in advance at home. Marcia wrote (in Ryan’s daily notebook home): I appreciate you sending the song and book list. We will teach him (the songs).  Ryan surprised me one day when he started singing a song that I hadn’t taught him. He learned it without any pre-teaching, just like the other kids. That was a major cause for celebration.
 
59%     We used whatever worked to help Ryan progress. Sometimes that meant combining ABA with other methods. A modified version of ABA worked even better for my son. By this time Ryan didn’t always need only immediate rewards. Ryan learned to perform this behavior all week.
 
68%     The good news was that NIDS plus school and home therapies were helping him with the real world. The bad news was that now he was recovered enough to realize he wasn’t included, and he didn’t really fit in this new world. The worst news was that he wasn’t yet able to learn the complex social skills that were required to connect with other kids. (He) was never invited over or didn’t have anyone who wanted to sit with him at lunch.
 
69%     We looked for other ways to help Ryan. We put him in an after-school chess club with kids from his class.
 
< My Thoughts >         “ We put him in an after-school chess club with kids from his class.”
 
Sometimes schools can offer ‘afterschool’ chess clubs, or, a lunchtime chess club meeting in a teacher’s room. The Physical Education Teachers or the Special Education Teachers often have classroom aides who can supervise and help out. I like a lunchtime meeting because that solves the problem of “Who will eat lunch with me?” But, it’s often too short a time to complete a game. You can take a photo of the board, though, and set it up the same way next time. After-school programs require and ‘After-school’ bus ride home. And… Special Ed kids often need to ride the ‘short’ bus with an aide, but they seldom stay for an extended day. Hmmm.
 
73%     I made the mistake of thinking since he sounded smart, he was socially smart. Before middle school started, I had Ryan’s special education file sealed. That didn’t really work. Ryan still didn’t fit. His teachers had no knowledge of his past history since I had his file sealed. He just looked like a disorganized kid who often left his assignments as home and had to call his mommy to bring them. If his teachers had know… they probably would have been impressed with all he had accomplished.
 
< My Thoughts >         This is on a parallel with never having been ‘diagnosed’ nor ‘labeled’…
 
Bargiela, et al. (2016) bring to our attention that many times girls aren’t diagnosed until later in their school years. Researchers say that females have not received ‘support’ equivalent to that of their male counterparts. Then, once they are ‘labeled’ teachers may misunderstand or question the diagnosis.
 
Cleverly, girls ‘pretend to be normal’ by wearing a mask, memorizing social behaviors from social media or pleasing and appeasing in order to blend in. Unfortunately, this brings up how severly ‘under-recognition’ can risk the wellbeing and educational opportunities for girls and women on the autism spectrum.
 
75%     Hitting was our dirty little secret. I never told anyone except Frank about this aggressive behavior. The hitting stopped after I became more stubborn than my son and became more serious about enforcing consequences. Disrespect from either of my kids was my hot button. He finally learned the consequence of his behavior was the loss of more computer time. Later, when I asked him why he stopped hitting me he said it was because I took away his beloved computer and wouldn’t give it back until he behaved the right way.
 
The bullying at his school was out of control. Somehow the bullying had to stop. I marched into the principal’s office to ask what he planned to do. He assured me he would look into it. But this principal usually went down the path of least resistance. Instead of interrogating the tormentor, he called Ryan into his office for ‘a talk’.
 
The school culture needed to be fixed and not just for my kid. Ryan desperately wanted to escape. He continually asked if we could move to California. His sister was already there in college. Ryan said if we moved we’d be closer to Megan, as well as the rest of our extended family.
 
76%     We finally left Minnesota after we came to the conclusion that twenty Minnesota winters were twenty too many, and we were done with the bullying. Ryan set-out to reinvent himself. He already had a plan for his new life in California.

He got his driver’s license after we moved there and after many close encounters with cars in parking lots.
 
77%     I started by planting the seed in Frank’s head that we needed to buy a proper California car. I told my husband a used convertible might be a fun choice. The real reason in wanted the car was it looked cool and later Ryan would have a babe magnet. I held my breath every time Ryan drove. But, I realized it takes two to make a car accident. Surely the other driver would be paying attention and maneuver to miss Ryan.
 
78%     Eventually, I decided I had to do something if my son was going to get into college. I disclosed Ryan’s past to his high school counselor. Mr. Lisowski suggested we put a 504 Plan in place to give Ryan extra time on tests. But a 504 meant we needed to inform all his teachers about the reason for the accommodation.
 
The 504 was granted, and it did help Ryan with his test anxiety.
 
79%     For a kid Ryan’s age, a normal life was about going to college, so that became my new focus. The choices our family made, some were good, some not so good. Ultimately, we were successful, but we were not always knowledgeable. We just tried to make the best decision at the time for Ryan.
 
The college admissions process reminds me more of a beauty pageant than an academic competition. It seems like it’s not enough to be smart, you have to have a great song and dance act as well. Kids need to participate in academic and community activities to make them more desirable. What I didn’t realize at the time was how important each of these activities would be to further Ryan’s personal development and growth.
 
81%     Ryan thought he was attending college to earn a degree in engineering. He excelled in all his courses, but gained so much more that just a diploma. He graduated with a degree in life. College taught Ryan how to be Ryan.
 
86%     Even after you begin climbing out of the abyss; it is not a constant, steady climb. Two steps forward, one step back. But we kept going because we had hope since ther was always some forward movement.
 
92%     We can never give up! We must continue the search until we find the answers for ALL children. That is the way to win our war against autism. We must win, because there are too many kids not getting better every day.

​End of this excerpt Focused on Autism & Law BLOG.
 
REFERENCES used in < My Thoughts > are:
 
Bargiela, S., Steward, R., Mandy, W, (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype, Journal of Autism & Developmental Disorders; V46; 2770-2773.
 
Crumrine, P. (2001). Lennox-Gaustaut Syndrome; Journal of Child Neurology; V17:1
 
Ha, V., Whittaker, A., Roger, S. (2012). Assessment & Diagnosis of Autism Spectrum Disorder in Hanoi, Vietnam; Journal of Child & Family Studies; V26, p1334-1344.
 
Moore, C. (2008). Thoughts About the Autism Label: A Parental View; Journal of Philosophy of Education; V42:3-4.