Blog #5D (1-3) Resources & Insurance with < My Thoughts > by Sara Luker

< My Thoughts >     LOOK for RESOURCES in your area through personal contact or by searching online. My search was… "Autism Resources & Services near me."  Here is what came up (in alphabetical order) …

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

There are many more listings, I’m certain and of course there are many Autism Organizations, statewide and nationwide. There may even be those which offer free programs and clinics. Realize, of course, that they will probably ask to use your data for a study or research. Smiles.
 
< My Thoughts >     You may want to check all of your INSURANCE for evidence of coverage, also your spouse’s benefits, & limitations; deductible, co-pay, co-insurance, and network of providers available to you. This is in addition to checking on what is possibly free from your city, state, county, and government services.

• Drug coverage
• Urgent care
• Primary care
• Dental/Vision
• Lab Services
• Medical Equipment
• Surgery
• Therapists
• Chiropractors
• Home Health Care

Look for the deep pockets before you overextend yourself on your credit card or mortgage your home. But I did raise my credit limit. It’s a bit of a stress reliever to know I can use the card to take advantage of opportunities which may arise and that might speed up the process or put my child at the head of the line. Of course, I only use it when time is of the essence…I use caution…and exhaust all ‘free’ sources first.  

Siri, K. & Lyons, T. (2014) tell us to also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military).
 
Keep track of medical expenses for tax season and know the name of the “Commissioner of Insurance” for your state, should you get the runaround from your insurance plan. You are most likely entitled to Medicaid and a Handicapped Parking sticker for easier access to buildings providing services for your child. The DMV has paperwork to be filled out by your physician.

< My Thoughts >           “…tax season…”
 
Check with your tax preparer, before Tax Season! Even if you hold a fulltime job elsewhere, you still may qualify as a ‘paid’ caregiver as the parent or grandparent of a Veteran’s disabled child. Yes, autism is considered a disability, as hurtful as that may sound.
 
Check all insurance policies of both parents. Which one will provide your child with more coverage? This may also help you decide which parent may have to reduce or rearrange their work schedule to meet the needs of your child’s many appointments and therapies.

While there is some help from the government (for medical bills), most notably Medicaid, there is not nearly enough. Your child may qualify for Supplemental Security Income (SSI), but this and Medicaid benefits will only go so far. You will likely dip, if not drain, savings… especially if you pursue alternative therapies. Remember that insurance is a business – your provider wants to take in more money than it pays out. This is definitely an area in which the squeaky wheel gets the grease.
 
Parker (2017) suggests that Medicare is pushing payments based on clinical outcomes. He reminds readers that it takes a village of doctors, counselors, therapists, medical professionals, specialists, and agency administrators, and of course parents to create a ‘best possible life’ for those with autism.

REPOSTING of BLOG #5E ~ The LAW & AUTISM… with < My Thoughts > by Sara Luker

The three major federal laws are Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act. And, the Americans with Disabilities Act (ADA) which says that tethered and trained service dogs are allowed where food is served, when accompanying the person with a disability.

But, sterile settings such as hospitals, surgery centers, etc. may legally prohibit these animals. Check www.ADA.gov for specific information.

State and Federal governments have introduced laws in many areas. Some of them are:

• Food & Drug Administration (FDA)
• Drug Enforcement (DEA)
• Governing Fetal Stem Cell Transplants
• Pharmaceuticals (including Medical Cannabis) & Insurance
• Education & Habilitation
• Employment & Support
• Offender Laws & Forensic Issues for the Courts

< My Thoughts >        “…Tethered and trained service dogs are allowed where food is served…”

Horoupian (2011) quotes the Americans with Disabilities Act’s (ADA) mandate of allowing use of service animals in public, including –

• Restaurants
• Hotels
• Retail establishments
• Theaters,
• Concert halls

Effective March 15, 2011, the types of animals are limited to animals which provide –

• Assisting during a seizure
• Alerting to allergens
• Retrieving medicine or phone
• Providing physical support & stability for those with mobility impairments
• Preventing or interrupting impulsive or destructive behavior
• Pulling a wheelchair
• Assisting sight-impaired persons

The regulation makes it clear that the animal must provide work or tasks under the definition of service animal; not just for well-being comfort or companionship.

Yen & Mao (2011) say that the Individuals with Disabilities Education Act (IDEA) is the primary law that is invoked when parents are trying to access services because it covers qualified individuals from age 3 to age 21 for educational needs. It includes Family Educational Rights & Privacy Act (FERPA) and Least Restrictive Environment (LEA).

​There are procedural safeguards in place and families of children with autism may need legal help to navigate the system when gaining access to programs as children and adults. Also that parents often encounter unanticipated challenges in their efforts to find optimal treatment and educational placement for their child. One of the most difficult obstacles involves dealing with the legal aspects.

Prior to this, Finkel (2010) wrote that the law in Illinois was ‘fuzzy’ when it came to ‘service dogs’ in the school classroom. In addition, he reports the school district’s attorney as saying having a dog in the classroom has safety issues and is a distraction. “It’s potentially disruptive for us… We don’t feel that it is necessary for the student’s success.” The court, however, ruled in favor of the family.

REFERENCES used here:

Finkel, E. (2010). Who Let the Dogs In?; The National Pulse; V96:4.

Horoupian, G. (2011). Service Dogs in the Restaurant: Justice Department’s Rules; Retrieved from: franchising.com.

Yen, J. & Mao, A. (2011). Laws that Affect Parents Raising a Child with Autism; Brown University Child & Adolescent Behavior Letter; V27:1, p1-6. 

First responders learn how to recognize Autism Spectrum Disorder by D.K. Wright; with < My Thoughts > by Sara Luker
 
Article Posted: Dec 10, 2019 / 08:10 PM EST / Updated: Dec 11, 2019 / 08:24 AM EST
 
BELMONT COUNTY, Ohio (WTRF) – A person who won’t look you in the eye, who might be unsteady on their feet, agitated or pacing–police often tend to take these as signs of guilt, or at least of being under the influence.
 
In Belmont County, Sheriff Dave Lucas hosted a seminar for ‘First Responders’ about how to recognize Autism Spectrum Disorder and how to interact with people who have it.
 
< My Thoughts >     “A person who won’t look you in the eye, who might be unsteady on their feet…”
 
Green (2013), in her review of various articles, discovered that much of the literature brings up the ‘invisibility of autism’. Families seem know long-term stress and anxiety because of experiencing societies’ expectations of the person with autism, the ‘invisible disability’.
 
People with autism are seven times more likely to interact with police. Their typical behaviors are easily mistaken for criminal conduct. “They may be using their hands, wringing their hands, and it may look like someone who’s in crisis in some way,” said Chief Deputy Jon Snowden of the Delaware County Sheriff’s Department. “They don’t make a lot of eye contact,” explained Carrie Gutowski, lawyer and ASD class trainer. “They have difficulty following directions. They may give unusual answers to questions.”
 
< My Thoughts >                 “Their typical behaviors are easily mistaken for criminal conduct.”
 
Cea (2014) says that an example of a criminal acts stemming from an obsession/special interest, for instance, was a person who stole computers in order to disassemble them. Thus fueling his passion for seeing what was inside the device.

Other factors which may predispose those with ASD to seemingly criminal behaviors would be aggressive behavior, poor social understanding, stress or anxiety from disruption of routines or perceived threatening events.

They are also 160 times more like to die of drowning. “Children with autism are very attracted to water,” said Gutowski. “We don’t know exactly why that is but we think they may like the sensory experience of how it feels when they touch it, how the light glistens off it of it.”
 
< My Thoughts >                 “Children with autism are very attracted to water…”
 
Hilton (2017) tells – Shortly after noon on October 4, 2013, a 14-year-old African American 8th grade student named Avonte Oquendo” ran out of the side door of his school and into the community. Identified as severely autistic and nonverbal, Avonte had a “strong sensory affinity for trains, cars, and water systems.”
​
Avonte’s disappearance and the discovery of his remains several months later… “The medical examiner concluded that he had most likely fallen from an embankment into the East river and drowned.” This tragedy “prompted local officials and politicians to call for review of educational policies and school-security protocols for children with disabilities…”
 
They said children with autism are escape artists. They like to go off by themselves and hide in small places.

In one case, they said a child was found hiding in the bottom drawer of the family’s kitchen stove. “Small places are sort of like a hug, right?” said Gutowski. “Like it helps them stay calm. And so they might go and climb into a nice warm car where they can get away from all the noise around them.”
 
< My Thoughts >                 “They like to go off by themselves…”
 
Until recently, Hilton (2017) continues, the voices of autistic people have been absent from the conversation about why wandering is such an issue with this population. Higashida (2013), Naoki, a 13 year-old-boy with nonverbal autism, through facilitated communication, answered questions concerning his elopement activity.

Question: Why did you wander off?

Answer: My body was lured there by ‘something’ outside. As I was walking farther from home, I didn’t feel any fear or anxiety. I had to keep walking on and on. Turning back was not permitted, because roads never come to an end. Roads speak to us people with autism, and invite us onward. Until someone brings us back home, we don’t know what we’ve done and then we’re as shocked as anyone.

Belmont County Sheriff Dave Lucas says they get more calls from schools lately, about students with autism. “If they’re overloaded (sensory overload), they might start acting out,” said Sheriff Lucas. “And if someone doesn’t know how to properly deal with it, we could cause or create more of a problem.”
 
< My Thoughts >         “…get more calls from schools lately…”
 
Walker (2016) claims that students as young as 16 are issued summonses for non-criminal offenses, said Advocates for Children, an educational activist group.  Last year, Director of the School Justice project for AFC, Dawn Yuster recalled that a 9-year-old student with disabilities was held by the NYPD in Velcro handcuffs. “It was devastating to the family to see their child in this situation,” she said. “It traumatizes the child for life.”

Yuster advises schools to provide crisis de-escalation training to public safety officers and faculty. Claiming there is a lifetime of “damage” to society when students acquire a record.
 
They say many people with autism can drive. But when pulled over in traffic, they may be slow to answer, unsteady or slurring their words. Officers learned that if they don’t smell alcohol, it’s OK to asks directly, “Do you have autism?”
 
“Absolutely,” said Chief Deputy Scowden, “it’s fine for the officer to ask people if they are autistic. It can save a lot of misunderstanding. ”
 
< My Thoughts >         “…it’s OK to ask directly, “Do you have autism?”
 
In Cariello & Capell (2015), Carrie Cariello remembers talking about  having autism with her son –
 
Jack, your autism is great. It is not something to be embarrassed about or that you should want to change about yourself. I love it. I mean, we all love it. It’s so interesting the way you see the world. I can’t wait to know more about it from you. I love you no matter what, I hope you know that.
 
It was Sunday morning in late September – the day after my birthday. I was fuzzily turning pancakes on the griddle while Jack perched at the counter flicking the top to the syrup open and closed and open and closed.

I was just about to tell him to stop doing that, it’s gross to put your hands all over the lid when he asked, “Why was I born with autism?”
 
“Well Jack, it’s a part of you, just like your eyes are blue and you have big feet.”
“Do all people with blue eyes have it?”
 
“No, it’s not really about your eyes. It’s like how you learn things.”

And then, in rapid fire, these questions –
“Do grown-ups have it?”
“Who else has it?”
“Where did I get it?”
 
How do I tell my nine-year-old that I love his autism but I also hate it and it’s beautiful but sometimes it’s so very, very ugly?
 
How do I tell him there are days I literally want to pull my hair out by the handfuls or, better yet, light my eyelashes on fire and run into the street screaming…
 
The trainers told ‘First Responders’ that their goal is to get them on their way to a call… reminding themselves that this may indeed be a criminal, but it may just be a person with autism.”
 
Copyright 2020 Nexstar Broadcasting, Inc. All rights reserved.
 
REFERENCES used here:

Cariello, C. & Capell, J. (2015). Someone I’m With Has Autism;  eBook 2015 Edition.

Cea, C. (2014). Autism & the Criminal Defendant; John’s Law Review; Summer, V88:2; p495-529.
 
Green, L. (2013). The Well-Being of Siblings of Individuals with Autism; ISRN Neurology; Vol 2013; Art. 417194. 
 
Higaskida, N. (2013) The Reason I Jump: The Inner Voice of a Thirteen Year Old; eBooks Edition.
 
Hilton, L. (2017). Avonte's Law: Autism, Wandering & the Racial Surveillance of Neurological Difference; African American Review, V50:2, p221-235.
 
Walker, T. (2016). School safety data say Black students face more arrests, summonses than white peers; New York Amsterdam News (Education Section); Sept./Oct.:39.

Families & Providers & Anesthesia by Amanda Whippery, MD with < My Thoughts > by Sara Luker

Whippery, A. (2019). Families & Providers, Outpatient Surgery Magazine; p27-34.

“We’ll hold him down so you can start the IV.” said one of the brothers “We’ve been through this before and this is the only way it can work.”

Our facility had no protocols for patients with Autism Spectrum Disorder (ASD). We needed to do better.  My colleagues and I trialed – A Special Accommodations Program for Children with Autism. Learning that you must change your ‘preoperative’ environment. Here are the reasons why:

• ASD is the fastest rising disability in North America
• More frequently than ‘neurotypical’ patients, ASD patients need sedation or anesthesia for –

Dental Care, Eye Exams, Bloodwork, Lab work, & Vaccinations

• Non-verbal ASD patient care can be stressful for families & providers alike
• Learn to anesthetize without traumatizing the patient
• Improved procedures can help all patients through generalized procedures

< My Thoughts >             “Improved procedures…”

The Centers for Disease Control & Prevention (CDC) tells parents that “It is important to understand that children with Autism Spectrum Disorder (ASD) can get sick or injured just like children without ASD. Regular medical and dental exams should be part of a child’s treatment plan.

Taking a child, or adult-child, with autism for a well-check or dental cleaning may not be done that easily. For one thing, most with ASD have the phenomenal memories of past experiences, sensory triggers and super-sonic hearing.

Procedures may be improved, but there are more complexities involved that meet the eye… because each individual is so different. For instance, the Diagnostic & Statistical Manual of Mental Disorders- 5 lists three levels of support which may be needed for patients with ASD –

• Requiring some support
• Requiring substantial support
• Requiring very substantial support

These severity levels concern the child, adolescent, and/or adult person with autism. Yes, their chronological, physiological, and mental ages each make a difference. A child’s developmental level looks different from their peers. The difference can be from mild to severe. From passive child to wild child, and somewhere in between.

Sonny, was in an adult body, requiring the anesthesia needed for his body size, but his mental age was 2yrs old… on a good day. Then there was his ability to pull it all together in the presence of an attractive and compassionate blonde. But, if he established rapport with her initially, and then the next time he sees her, her hair and face are covered (especially with colored, cloth, paper, or patterned materials)  … all bets are off.

We trialed a “Special Accommodations Program” for children with ASD at our institution.
 
​< My Thoughts >            “Learning special accommodations…”

Different trigger mechanisms can cause an intolerance of uncertainty, creating anxiety, and possibly, restrictive/repetitive behavior. These things may be helped by engaging the person’s favorite phrases or sayings from familiar DVDs, songs, or stories.
     
From Cynthia Lord’s 2003 eBook, Rules for David, “So someday… he’ll-wake-up-a-regular-brother…” Follow the Rules –  “Come on, David.”  I let go of his sleeve, afraid I’ll rip it. When he was little, I could pull my brother behind me if he didn’t want to do something, but now David’s eight and too strong to be pulled.
 
“Let’s go to the video store,” David says, not moving one inch. “You’re going to the clinic. But if you do a good job, Dad’ll take you to the video store when he comes home.” The video store is David’s favorite place…
 
Beside me, David checks his watch. “I’ll pick you up at five o’clock.” “Dad will pick you up at 5 o’clock. That’s the rule.”  David leaps down the steps. He might not understand some things, but David loves rules.
 
But remembering the rules doesn’t help. So I reach over, wipe away his tears knowing this will calm him. “Frog you are looking quite green,” said Frog. “I am not a frog,” David sniffles.
 
Parents and other caregivers can share other ways to enter into their world in order to gain their trust. Some say that persons with autism are the ‘new normal’ because many have normal IQ, but lack the necessary social and emotional knowledge. They seem to be finding their place in society, especially in the world of technology. Perhaps because there you can make your own rules.

Important also, is to always tell the patient what you are doing, and why you are doing it. Repeat the procedure a different way if, what you’re saying doesn’t seem to resonate. Allow cognitive processing time.
 
Sometimes you have to find a different way into their world. Squaresky (2014) shares this about her son, age four.  Greg sat next to me at the kitchen table.  I took out a marker and tried to draw Cookie Monster.  Unable to communicate with my son verbally, I decided to try to connect with him through art.  Greg showed that he was able to learn, but his learning was mainly visual.

I drew Cookie Monster for a month or so, and being unable to draw anything more complex, I didn’t try other characters.
Greg watched, said, “Go Dabba” and “more.”  Speech appeared only in bits.  After producing each new sketch with scented markers, Greg smelled the Cookie Monsters. 

ASD cases are very challenging, often taking providers out of their comfort zone.

< My Thoughts >            “ASD cases are very challenging, often taking providers out of their comfort zone.”

• Preliminary staff is different than those at actual visit… or, staff changes with each visit.
• Parents can play different roles at time of surgery… soother, enforcer.

Non-verbal person may take longer to understand procedures, if staff doesn’t try to explain what’s happening, as they go along.

Then, give time for patient to process the unfamiliar information. Bring along communication devices from home.

• Using ‘character’ voices may help… “I have a laser, and I will use it!” “To Infinity, and beyond!” “I need a hug!”
• Social stories…. Gas mask… practice at home… use pedi-needles…

Having a more willing participant and less pharmacological interventions, provide better outcomes.

< My Thoughts >             “Having a more willing participant…”

The patient’s Sensory Needs can become very important to understand.  Bogdashina (2003) says that there are many things that people with autism often seek to avoid –

• External control
• Disorder
• Chaos
• Noise
• Bright lights
• Touch
• Involuntary involvement

Note: External control for those with autism may appear in ‘sensory defensive’ behaviors the types of sensory defensiveness –

• Tactile Defensiveness – avoids being touched or bumped and feeling crowded. May grab or push in order to control being touched.
• Oral Defensiveness – flavors, textures, or temperatures of things in their mouth. May agree to be the one to place something in their mouth.
• Visual Defensiveness – oversensitive to light. May avoid eye contact and startle when lights change or under certain lights, such a fluorescent lighting.
• Auditory Defensiveness – sensitive to certain frequencies and/or loud noises. May cover ears or emit screeching sounds to block out what they are hearing.
• Olfactory Defensiveness – certain smells can cause agitation. May become nauseous and/or vomit and/or defecate in response to the offending odor.
• Gravitational/Postural Insecurity or Defensiveness – irrational fear of change in position and/or movement. May try to elevate their head and/or place their feet on the ground and try to run.

These are complex issues, because any or all sensory reactions can cause any of the above undesirable behaviors. Keep in mind that sensory excitement can trigger stimming (hand-flapping, head-banging, hair pulling, scratching or biting, or whatever seems to break the circuit). These are reactions, not thoughtful actions.

Borutta (2015), in human bodies the most important rhythms are in our heart and brain. Other organs establish their own rhythms to provide for respiration, locomotion, digestion, and other functions necessary for life to continue. A finely tuned system which goes mostly unobserved until illness or trauma temporarily upset that balance.

Traumatic inductions can result in behavior changes, sleep disruption and symptoms resembling post-traumatic stress disorder.

< My Thoughts >           “…resembling post-traumatic stress disorder.”

Stress can also be caused by repetitive upsetting thoughts, or flashbacks. Comorbid with autism is often Obsessive Compulsive Disorder (OCD) causing ritualistic behavior which could severely disrupt the surgical process. And, my son cannot tolerate hats, so when it is insisted that he wear a sanitary hat for the surgery, he goes into a compulsive escape behavior.

Then when the friendly staff he’s seen during pre-op, come in with their surgical garb on, he will try to pull everything off of everyone; starting with the hats, surgical gloves, and even their shoe covers. And, if you want Sonny to put his head down then there must be a pillow and directions. "Sonny, put your head on the pillow, please." 

Individualized Plans – a pre-op nurse interviews the family, using a pre-op checklist screening form. Through this form, the family shares the patient’s behavior triggers, sensory needs, and how s/he tolerates strangers, according to previous experiences.

< My Thoughts >       “…Individualized Plans…to accommodate behavior triggers…”

Be clear about what normal daily meds need to be given and when. Sent mask home to practice… smell may be a problem for those with sensory issues. Perfume… hair covered… color and/or feel of the gowns…

Have staff and family stay to observe any complications from anesthesia, previous aspiration pneumonia. Post-op diet and medication. Have needed things ahead of time, for instance… clear liquids (what does the person like/dislike?), straw (may want one with a minimum volume), what is needed if person vomits, on the ride home. Water analgesic for pain, before anesthesia wears off.       

Nonpharmaceutical intervention provides better outcomes.

< My Thoughts >            “…Nonpharmaceutical intervention provides better outcomes.”

Other ‘nonpharmaceutical interventions which come to mind which may provide a better outcome for patients might be using ‘visual schedules’ and/or ‘social stories’. Another consideration could be to provide a staff member to act as ‘coach’ for staff, patients, and family alike.  Much like a ‘life coach’ who guides the process from beginning to end. The protocol for this would be ‘individual’, according to the patient circumstances.

We do everything in our power to minimize stress to our patient to engender cooperation, and to make the patient a more willing participant.

< My Thoughts >          “…a more willing participant.”

Make the patient a more willing participant by letting parents be present to a certain point… much like a neuro-typical patient with PTSD. Thomas the Train aficionados may respond to the symbolic phrases – “Stop, the signal is up!” “Apply the brakes, danger ahead!” “Thomas seems sad (frightened, anxious, fearful, etc.).” “Do you know why?” Know also, that most behaviors ignore negative phrases… “Don’t” or “NO!” for instance.  Better to tell them the action you desire… “Hands down” or “Wait, please” or “Thanks for staying calm.”

We also exposed them to different scents. The smell of sevofluracane can be a trigger. Send home a mask for practice and reevaluate.

< My Thoughts >           “…exposed them to different scents.”

Some scents can trigger sensory reactions. Some children with autism may even vomit or become distressed at the smell of perfume, or other odors. So, the smell, even a faint whiff, of things in the surgery theatre, may become an issue. Or, they may find them stimulating and become excitable. Know that these reactions are involuntary on their part.
 
On the day of surgery, we will reassess based on how well the child adapted. Streamline the pre-op process.
Make ASD patients first case of the day, because coping abilities may decrease later in the day.

< My Thoughts >          “…coping skills…

Some participants may be filled with adrenaline and excitement, first thing in the day. You know those people. I call them the “gett’er done” people. Smiles.

Later in the day, that same person may be exhausted, or at least wound-down. And so what are the staff’s coping skills? Which is better for them, earlier or later in the day? The patient will know those staff members that are not up to dealing with this particular situation and/or patient, no matter what time of day. Trust me on this one!

Different patients may metabolize meds differently.
Individualized plans – we ask patients and family members to visit us for a pre-op meeting with a standardized autism checklist to screen for creating a coping plan. Example of what will be needed to provide a customized experience.
     
< My Thoughts >             “Individualized plans…”

Stay to observe any complications from anesthesia, surgery, bleeding and bruising due to patient’s daily meds, to seizure activity. Post-op meetings could cover the things needed to have handy for the ride home. Drinking using a tiny volume straw to help prevent aspiration problems. Clear liquids and solids, such as apple juice and gelatin, or whatever might be recommended.

​Also, make certain the parents understand about ‘nothing by mouth’ before surgery. In some cases, an exception may be the person’s seizure or other necessary medication. And, remember that everyone metabolizes medication differently. Our son had seizures after surgery, if he didn’t have his seizure meds before surgery.

​Parents may share that the child may or may not tolerate strangers and healthcare professionals in their space. This includes any physical touching, use of a facial mask, and any IV procedures.

< My Thoughts >             “…may or may not tolerate strangers and healthcare professionals in their space…”

Children and adults with autism, when under stress, may see auras. They may also think that ‘everyone else’ in the room sees auras, too. In fact, Zaraska (2016), tells us that the presence of synesthesia is 31% higher in those person’s on the autism spectrum. She goes on to say that scientists believe synesthesia is caused by a hyper-excitability of the visual cortex. Where even the sound of a car honking or a door slamming can trigger seeing colors.

While Lacey, et al. (2016) agree that ‘synesthesetes’ experience an association between seemingly unrelated sensory features.
Remember the staff members who may not be up to dealing with this particular situation? Well, they may be emitting an aura which will influence how things proceed.

For instance – The neuro-typical child may say about someone, “She doesn’t like me!” While the child with autism might say, “When the she comes near me, the soft yellow light around her turns a yucky brown color. Like dirt and things in the toilet.”

Patients appreciate being asked about how to best support their child and stay involved with creating a coping plan. These may include knowing triggers such as loud noises, bright lights, strong smells, strangers, physical touch, transitions, and previous experiences.

< My Thoughts >             “…creating a coping plan…”

“Once I give him what I’m going to give him… he’ll be ‘out’… no problems… no seizures.” Wrong!” The child/adult on the spectrum will know this immediately. More extensive coping plans may be needed for some. Make certain that everyone is on board. Some staff members may not be comfortable or flexible with this. Know that –

• What works for one patient may or may not work for the next patient.
• Without their seizure or behavior medications at the usual time and in the regular amount there is a definite risk for an unexpected event.
• Everyone metabolizes medications differently.
• What is the most known fact about autism is that each individual is very different from another.
• The staff member who rehearsed without surgery’s sanitary scrubs, gowns and hats, becomes a whole new person in the eyes of the child/adult with autism.
• Even a new or recent shampoo or body wash or a dangling stethoscope can be problematic.

​Some patients find support using a visual schedule with all anticipated steps in the procedure. Other patients may respond to having a coach speaking calmly, guiding and describing each step surgical process. For younger patients, a social story, which they can help design, can show them what to expect. 
​

Note: My personal thanks to the author Amanda Whippery, M.D., for creating an awareness on the subject of Families, Providers, & Anesthesia. And, to all those involved in trying to change the 'preoperative' environment. Sara Luker

References used in < My Thoughts > are:

Bogdashina, O. (2003). Sensory Perceptual Issues in Autism & Asperger Syndrome: Different Sensory Experiences – Different Perceptual World; Jessica Kingsley Publishers: London.

Borutta, R. (2019). The Music of the Soul & the Inner Light; Journal for Spiritual & Consciousness Studies, Inc.; V38:2, p113 – 120.

Lacey, S., Martinez, M., McCormick, K., & Sathian, K. (2016). Synesthesia Strengthens Sound-symbolic Cross-modal Correspondences; European Journal of Neuroscience (EJN); V44, p2716-2721.

Lord, C. (2003). Rules for David; eBook 2003 Edition.

Squaresky, M. (2014). A Spot on the Wall; eBook 2014 Edition.

​Zaraska, M. (2016). Hear the Violet, Taste the Velvet; Scientific American Mind; V27:6, Nov.

Families & Providers by Amanda Whippery, MD with < My Thoughts > by Sara Luker

Whippery, A. (2019). Families & Providers, Outpatient Surgery Magazine; p27-34.

“We’ll hold him down so you can start the IV.” said one of the brothers “We’ve been through this before and this is the only way it can work.”

Our facility had no protocols for patients with Autism Spectrum Disorder (ASD). We needed to do better.  My colleagues and I trialed – A Special Accommodations Program for Children with Autism. Learning that you must change your ‘preoperative’ environment. Here are the reasons why:

• ASD is the fastest rising disability in North America
• More frequently than ‘neurotypical’ patients, ASD patients need sedation or anesthesia for –

Dental Care, Eye Exams, Bloodwork, Lab work, & Vaccinations

• Non-verbal ASD patient care can be stressful for families & providers alike
• Learn to anesthetize without traumatizing the patient
• Improved procedures can help all patients through generalized procedures

< My Thoughts >             “Improved procedures…”

The Centers for Disease Control & Prevention (CDC) tells parents that “It is important to understand that children with Autism Spectrum Disorder (ASD) can get sick or injured just like children without ASD. Regular medical and dental exams should be part of a child’s treatment plan.

Taking a child, or adult-child, with autism for a well-check or dental cleaning may not be done that easily. For one thing, most with ASD have the phenomenal memories of past experiences, sensory triggers and super-sonic hearing.

Procedures may be improved, but there are more complexities involved that meet the eye… because each individual is so different. For instance, the Diagnostic & Statistical Manual of Mental Disorders- 5 lists three levels of support which may be needed for patients with ASD –

• Requiring some support
• Requiring substantial support
• Requiring very substantial support

These severity levels concern the child, adolescent, and/or adult person with autism. Yes, their chronological, physiological, and mental ages each make a difference. A child’s developmental level looks different from their peers. The difference can be from mild to severe. From passive child to wild child, and somewhere in between.

Sonny, was in an adult body, requiring the anesthesia needed for his body size, but his mental age was 2yrs old… on a good day. Then there was his ability to pull it all together in the presence of an attractive and compassionate blonde. But, if he established rapport with her initially, and then the next time he sees her, her hair and face are covered (especially with colored, cloth, paper, or patterned materials)  … all bets are off.

We trialed a “Special Accommodations Program” for children with ASD at our institution.
 
​< My Thoughts >            “Learning special accommodations…”

Different trigger mechanisms can cause an intolerance of uncertainty, creating anxiety, and possibly, restrictive/repetitive behavior. These things may be helped by engaging the person’s favorite phrases or sayings from familiar DVDs, songs, or stories.
     
From Cynthia Lord’s 2003 eBook, Rules for David, “So someday… he’ll-wake-up-a-regular-brother…” Follow the Rules –  “Come on, David.”  I let go of his sleeve, afraid I’ll rip it. When he was little, I could pull my brother behind me if he didn’t want to do something, but now David’s eight and too strong to be pulled.
 
“Let’s go to the video store,” David says, not moving one inch. “You’re going to the clinic. But if you do a good job, Dad’ll take you to the video store when he comes home.” The video store is David’s favorite place…
 
Beside me, David checks his watch. “I’ll pick you up at five o’clock.” “Dad will pick you up at 5 o’clock. That’s the rule.”  David leaps down the steps. He might not understand some things, but David loves rules.
 
But remembering the rules doesn’t help. So I reach over, wipe away his tears knowing this will calm him. “Frog you are looking quite green,” said Frog. “I am not a frog,” David sniffles.
 
Parents and other caregivers can share other ways to enter into their world in order to gain their trust. Some say that persons with autism are the ‘new normal’ because many have normal IQ, but lack the necessary social and emotional knowledge. They seem to be finding their place in society, especially in the world of technology. Perhaps because there you can make your own rules.

Important also, is to always tell the patient what you are doing, and why you are doing it. Repeat the procedure a different way if, what you’re saying doesn’t seem to resonate. Allow cognitive processing time.
 
Sometimes you have to find a different way into their world. Squaresky (2014) shares this about her son, age four.  Greg sat next to me at the kitchen table.  I took out a marker and tried to draw Cookie Monster.  Unable to communicate with my son verbally, I decided to try to connect with him through art.  Greg showed that he was able to learn, but his learning was mainly visual.

I drew Cookie Monster for a month or so, and being unable to draw anything more complex, I didn’t try other characters.
Greg watched, said, “Go Dabba” and “more.”  Speech appeared only in bits.  After producing each new sketch with scented markers, Greg smelled the Cookie Monsters. 

ASD cases are very challenging, often taking providers out of their comfort zone.

< My Thoughts >            “ASD cases are very challenging, often taking providers out of their comfort zone.”

• Preliminary staff is different than those at actual visit… or, staff changes with each visit.
• Parents can play different roles at time of surgery… soother, enforcer.

Non-verbal person may take longer to understand procedures, if staff doesn’t try to explain what’s happening, as they go along.

Then, give time for patient to process the unfamiliar information. Bring along communication devices from home.

• Using ‘character’ voices may help… “I have a laser, and I will use it!” “To Infinity, and beyond!” “I need a hug!”
• Social stories…. Gas mask… practice at home… use pedi-needles…

Having a more willing participant and less pharmacological interventions, provide better outcomes.

< My Thoughts >             “Having a more willing participant…”

The patient’s Sensory Needs can become very important to understand.  Bogdashina (2003) says that there are many things that people with autism often seek to avoid –

• External control
• Disorder
• Chaos
• Noise
• Bright lights
• Touch
• Involuntary involvement

Note: External control for those with autism may appear in ‘sensory defensive’ behaviors the types of sensory defensiveness –

• Tactile Defensiveness – avoids being touched or bumped and feeling crowded. May grab or push in order to control being touched.
• Oral Defensiveness – flavors, textures, or temperatures of things in their mouth. May agree to be the one to place something in their mouth.
• Visual Defensiveness – oversensitive to light. May avoid eye contact and startle when lights change or under certain lights, such a fluorescent lighting.
• Auditory Defensiveness – sensitive to certain frequencies and/or loud noises. May cover ears or emit screeching sounds to block out what they are hearing.
• Olfactory Defensiveness – certain smells can cause agitation. May become nauseous and/or vomit and/or defecate in response to the offending odor.
• Gravitational/Postural Insecurity or Defensiveness – irrational fear of change in position and/or movement. May try to elevate their head and/or place their feet on the ground and try to run.

These are complex issues, because any or all sensory reactions can cause any of the above undesirable behaviors. Keep in mind that sensory excitement can trigger stimming (hand-flapping, head-banging, hair pulling, scratching or biting, or whatever seems to break the circuit). These are reactions, not thoughtful actions.

Borutta (2015), in human bodies the most important rhythms are in our heart and brain. Other organs establish their own rhythms to provide for respiration, locomotion, digestion, and other functions necessary for life to continue. A finely tuned system which goes mostly unobserved until illness or trauma temporarily upset that balance.

Traumatic inductions can result in behavior changes, sleep disruption and symptoms resembling post-traumatic stress disorder.

< My Thoughts >           “…resembling post-traumatic stress disorder.”

Stress can also be caused by repetitive upsetting thoughts, or flashbacks. Comorbid with autism is often Obsessive Compulsive Disorder (OCD) causing ritualistic behavior which could severely disrupt the surgical process. And, my son cannot tolerate hats, so when it is insisted that he wear a sanitary hat for the surgery, he goes into a compulsive escape behavior.

Then when the friendly staff he’s seen during pre-op, come in with their surgical garb on, he will try to pull everything off of everyone; starting with the hats, surgical gloves, and even their shoe covers. And, if you want Sonny to put his head down then there must be a pillow and directions. "Sonny, put your head on the pillow, please." 

Individualized Plans – a pre-op nurse interviews the family, using a pre-op checklist screening form. Through this form, the family shares the patient’s behavior triggers, sensory needs, and how s/he tolerates strangers, according to previous experiences.

< My Thoughts >       “…Individualized Plans…to accommodate behavior triggers…”

Be clear about what normal daily meds need to be given and when. Sent mask home to practice… smell may be a problem for those with sensory issues. Perfume… hair covered… color and/or feel of the gowns…

Have staff and family stay to observe any complications from anesthesia, previous aspiration pneumonia. Post-op diet and medication. Have needed things ahead of time, for instance… clear liquids (what does the person like/dislike?), straw (may want one with a minimum volume), what is needed if person vomits, on the ride home. Water analgesic for pain, before anesthesia wears off.       

Nonpharmaceutical intervention provides better outcomes.

< My Thoughts >            “…Nonpharmaceutical intervention provides better outcomes.”

Other ‘nonpharmaceutical interventions which come to mind which may provide a better outcome for patients might be using ‘visual schedules’ and/or ‘social stories’. Another consideration could be to provide a staff member to act as ‘coach’ for staff, patients, and family alike.  Much like a ‘life coach’ who guides the process from beginning to end. The protocol for this would be ‘individual’, according to the patient circumstances.

We do everything in our power to minimize stress to our patient to engender cooperation, and to make the patient a more willing participant.

< My Thoughts >          “…a more willing participant.”

Make the patient a more willing participant by letting parents be present to a certain point… much like a neuro-typical patient with PTSD. Thomas the Train aficionados may respond to the symbolic phrases – “Stop, the signal is up!” “Apply the brakes, danger ahead!” “Thomas seems sad (frightened, anxious, fearful, etc.).” “Do you know why?” Know also, that most behaviors ignore negative phrases… “Don’t” or “NO!” for instance.  Better to tell them the action you desire… “Hands down” or “Wait, please” or “Thanks for staying calm.”

We also exposed them to different scents. The smell of sevofluracane can be a trigger. Send home a mask for practice and reevaluate.

< My Thoughts >           “…exposed them to different scents.”

Some scents can trigger sensory reactions. Some children with autism may even vomit or become distressed at the smell of perfume, or other odors. So, the smell, even a faint whiff, of things in the surgery theatre, may become an issue. Or, they may find them stimulating and become excitable. Know that these reactions are involuntary on their part.
 
On the day of surgery, we will reassess based on how well the child adapted. Streamline the pre-op process.
Make ASD patients first case of the day, because coping abilities may decrease later in the day.

< My Thoughts >          “…coping skills…

Some participants may be filled with adrenaline and excitement, first thing in the day. You know those people. I call them the “gett’er done” people. Smiles.

Later in the day, that same person may be exhausted, or at least wound-down. And so what are the staff’s coping skills? Which is better for them, earlier or later in the day? The patient will know those staff members that are not up to dealing with this particular situation and/or patient, no matter what time of day. Trust me on this one!

Different patients may metabolize meds differently.
Individualized plans – we ask patients and family members to visit us for a pre-op meeting with a standardized autism checklist to screen for creating a coping plan. Example of what will be needed to provide a customized experience.
     
< My Thoughts >             “Individualized plans…”

Stay to observe any complications from anesthesia, surgery, bleeding and bruising due to patient’s daily meds, to seizure activity. Post-op meetings could cover the things needed to have handy for the ride home. Drinking using a tiny volume straw to help prevent aspiration problems. Clear liquids and solids, such as apple juice and gelatin, or whatever might be recommended.

​Also, make certain the parents understand about ‘nothing by mouth’ before surgery. In some cases, an exception may be the person’s seizure or other necessary medication. And, remember that everyone metabolizes medication differently. Our son had seizures after surgery, if he didn’t have his seizure meds before surgery.

​Parents may share that the child may or may not tolerate strangers and healthcare professionals in their space. This includes any physical touching, use of a facial mask, and any IV procedures.

< My Thoughts >             “…may or may not tolerate strangers and healthcare professionals in their space…”

Children and adults with autism, when under stress, may see auras. They may also think that ‘everyone else’ in the room sees auras, too. In fact, Zaraska (2016), tells us that the presence of synesthesia is 31% higher in those person’s on the autism spectrum. She goes on to say that scientists believe synesthesia is caused by a hyper-excitability of the visual cortex. Where even the sound of a car honking or a door slamming can trigger seeing colors.

While Lacey, et al. (2016) agree that ‘synesthesetes’ experience an association between seemingly unrelated sensory features.
Remember the staff members who may not be up to dealing with this particular situation? Well, they may be emitting an aura which will influence how things proceed.

For instance – The neuro-typical child may say about someone, “She doesn’t like me!” While the child with autism might say, “When the she comes near me, the soft yellow light around her turns a yucky brown color. Like dirt and things in the toilet.”

Patients appreciate being asked about how to best support their child and stay involved with creating a coping plan. These may include knowing triggers such as loud noises, bright lights, strong smells, strangers, physical touch, transitions, and previous experiences.

< My Thoughts >             “…creating a coping plan…”

“Once I give him what I’m going to give him… he’ll be ‘out’… no problems… no seizures.” Wrong!” The child/adult on the spectrum will know this immediately. More extensive coping plans may be needed for some. Make certain that everyone is on board. Some staff members may not be comfortable or flexible with this. Know that –

• What works for one patient may or may not work for the next patient.
• Without their seizure or behavior medications at the usual time and in the regular amount there is a definite risk for an unexpected event.
• Everyone metabolizes medications differently.
• What is the most known fact about autism is that each individual is very different from another.
• The staff member who rehearsed without surgery’s sanitary scrubs, gowns and hats, becomes a whole new person in the eyes of the child/adult with autism.
• Even a new or recent shampoo or body wash or a dangling stethoscope can be problematic.

​Some patients find support using a visual schedule with all anticipated steps in the procedure. Other patients may respond to having a coach speaking calmly, guiding and describing each step surgical process. For younger patients, a social story, which they can help design, can show them what to expect. 
​

Note: My personal thanks to the author for creating an awareness on the subject of Families, Providers, & Anesthesia. And, to all those involved in trying to change the 'preoperative' environment. Sara Luker

References are:

Bogdashina, O. (2003). Sensory Perceptual Issues in Autism & Asperger Syndrome: Different Sensory Experiences – Different Perceptual World; Jessica Kingsley Publishers: London.

Borutta, R. (2019). The Music of the Soul & the Inner Light; Journal for Spiritual & Consciousness Studies, Inc.; V38:2, p113 – 120.

Lacey, S., Martinez, M., McCormick, K., & Sathian, K. (2016). Synesthesia Strengthens Sound-symbolic Cross-modal Correspondences; European Journal of Neuroscience (EJN); V44, p2716-2721.

Lord, C. (2003). Rules for David; eBook 2003 Edition.

Squaresky, M. (2014). A Spot on the Wall; eBook 2014 Edition.

​Zaraska, M. (2016). Hear the Violet, Taste the Velvet; Scientific American Mind; V27:6, Nov.

#5 Know Your Child             

Under… “What to do While You Wait”
​
INTRODUCTION:

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

Each child learns differently & each parent 'parents' differently.

This website hopefully becomes a continuing source of information for you. 

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

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

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

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

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

​< My Thoughts >       …”Early intervention works!”
 
Programs, therapies and interventions are costly and can have both positive and negative effects. That’s why it is so important to ‘know your child’ and ‘know your child’s autism’ can be so critical. When treatments are successful, everything changes. Positive-negative side effects for young children can be that they become much more aware of what they want and how to get it. Then, when you don’t understand what they want, they get upset and tantrum or pinch to get your attention.
 
When a child becomes more ‘aware’ and begins to have a heightened understanding of how things around them work; for instance doors and windows. And where the neighborhood candy store is, then successful ‘escape’ behaviors may start to occur. After years of building his skills and confidence, Ken Siri’s (2014) autistic son Alex ran off in downtown Manhattan. He was finally found after two frantic hours of searching. He had made it out of the house, through traffic, to his favorite candy store. Smiles.

Siri & Lyons (2014) say that as researchers begin to understand enough about each individual’s autism, they can develop a particular treatment for that particular dysfunction. When doctors can do a ‘biochemical’ profile they can start to understand the child’s symptoms. There is talk about how allergies can cause a ‘cascade’ of events which may look like a behavior. The presence of chronic gastrointestinal (GI) symptoms in children with ASD can cause diseases of the intestinal track.

​This demands medical attention, evaluation, and changes which may include treating diet, nutrition. When treated, unwanted behaviors may disappear. Also, some say that understanding how various environmental toxins can cause stress or upset hormone levels in the thyroid, in a child with autism, is necessary to improve overall health.
​
In 2015 Alice Park, Senior Science journalist for TIME Magazine, published an interesting article titled – Researchers Zero In on the Best Way to Diagnose Autism. She tells us that traditionally, autism is diagnosed with behavioral tests that assess whether kids are meeting developmental milestones, such as talking, interacting with their parents and siblings, and learning to give and take in social situations. But that in recent years, scientists have been working on other ways to detect and potentially diagnose autism, such as having identified more than 100 genes connected with a higher risk of developing autism. 

Decide where, when, why and which interventions may help your child. Along with knowing your child, you will begin to know yourself. Asking these questions about ‘Limits’ may be a starting place:

• Limits of my ability to provide my child’s intervention myself, after training? (Would you want to try?)
• Limit of my child’s ability to tolerate certain interventions? (How long can my child engage without problems?)
• Limit of the professionals we have easy access to? (Who’s out there and how can they help me?)
• Limit of our city, county, or state to provide help? (Should I look in other places for what we need?)
• Limit of our family financial and personal resources? (Should I consult a financial advisor?)
• Limit of our child’s ‘label’ once they are diagnosed? (Is the ‘label’ broad enough to get the services we need?)
• Limit of our insurance company coverage? (Have I all the information I need about providers, referrals & coverage?)
• Limit of our status as may be needed to receive outside help? (How does our Zip Code affect services? Too rich or too poor…)

 
Chess & Thomas (1995) tell us that most children and adults master the trials of daily living while others fail to meet the same demands at home, at school, with peers and at work. So, professionals are trying to understand why we have such behavioral differences. And to determine interventions that will eliminate, or at least reduce, problems in functioning.

Recently, there has been renewed interest in understanding a children's temperament to help us treat a range of behavior and conduct problems. They believe that temperament predictability can even help to prevent the onset of certain undesirable behaviors.
 
These physicians have found that several factors combine with temperament to shape personality throughout childhood and adult life. They are:
 

• Cognition – Does s/he understand the purpose of what’s going on around them?
• Self-awareness – Does s/he understand that there is a world outside themselves?
• Motivation – What are the child’s motivators? (Probably the things s/he fixates, focuses, or perseverates on.)

They go on to say that the interaction between clinicians, teachers, and others in your child’s learning environment need to be a ‘good fit’ in order for everyone to become successful. Here are some examples they cite – If your daughter has a low stimulation threshold and you aren’t aware that she’s irritated by wearing scratchy clothing.

This may exaggerate her natural temperament. Or, if your son doesn’t warm up to strangers, try allowing a meeting in a more comfortable setting. For instance, in a place he likes to go. By recognizing and respecting individual temperaments you can avoid unnecessary conflict and unwanted behaviors. It helps to play detective.

< My Thoughts >       “…a place he likes to go.”  
 
A place our Sonny likes to go is Mc Donald’s. Meeting someone new at Mickey D’s while munching on fries and washing it down with soda… that’s a win-win situation for Sonny. Then when he sees that ‘person’ again, at least the meeting is off to a pretty good start.

Bottom line, you want to keep your child in a setting where there is reduced anxiety and frustration. Plus, this is an opportunity for bonding with the new ‘person’ and a chance for your child to have a learning experience where s/he will gain some feeling of satisfaction and accomplishment.

​Meanwhile, children with Autism communicate in one of the few ways available to them – through temper tantrums, hyperactivity and /or aggressive behaviors towards self and others. Through behavior modification plans and programs, parents and teachers strive to control the chaos in their lives (Sicile-Kira, 2004).
 
For behavior intervention to be successful in older children, it must be a collaborative effort between the home and school. Parents may have difficulty buying into a behavior intervention because as Thompson (2007) tells us, first the family has to truly believe that their child had Autism and that they are not going to snap out of it or outgrow it.

Another difficulty for the family may be the unfamiliar terms and concepts they will encounter. Parents may also have difficulty creating the changes necessary due to the daily routines and demands of their own lives. An alternative strategy would be to begin with the family’s day-to-day routines.
 
< My Thoughts >       “Parents may have difficulty buying into a behavior intervention.”
 
Know what you can and can’t do. Know your child’s strengths and willingness to accept these changes. You will find that there is hope and there is help, as we continue to explore ways to ‘know your child’. Next, we will discuss ‘temperament’ and what to look for in your child and yourself, too. Smiles.
 
References:
 
Chess, S. & Thomas, A. (1995). Keep your child's temperament in mind when analyzing problems and solutions; Brown University Child & Adolescent Behavior Letter, 10581073, Jun95, Vol. 11, Issue 6.
 
Sicile-Kira, C. (2004).  Autism Spectrum Disorders: The Complete Guide to Understand Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and other ASD’s.  New York: Perigee/The Berkeley Publishing Group.
 
Siri, K. (2010). 1,001Tips for the Parents of Autistic Boys; Skyhorse Publishing, New York, N.Y.
 
Siri, K. & Lyons, T. (2014). Cutting-Edge Therapies for Autism; 4th Edition; Skyhorse Publishing, New York, N.Y.
 
Thompson, T. (2007). Making Sense of Autism. Baltimore, Maryland. Paul H. Brookes Publishing Co.
========

​BLOG #4A Looking Into Programs...

Advice about finding 'treatments'...given by the  Centers for Disease Control and Prevention – https://www.cdc.gov

Advice to parents – “An ideal treatment coordinates therapies to address the core disorders the child is experiencing. An effective treatment program builds on the child’s interests and engages the child. More reliable than miracle cures, which appear in magazines, parents should seek out the thoroughly researched and well-documented data derived from carefully controlled clinical research.”
 
< My Thoughts >  Parents, before posting more information on all of these choices, let me offer my sincerest wishes that you first get to know your child. Getting to know your child will help you bring balance, peace, and harmony to the life of your child, yourself, and the rest of your family by choosing the best intervention.
 
Clarify and prioritize what concerns you the most. Some of you will have mild concerns, while others are living in a state of high situational stress and hyper-vigilance because of your child’s actions. Both need to be addressed. These are not phases which will pass; these are serious concerns which can be dealt with through intervention. The sooner the better but not before you check things out thoroughly.

Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to research the information presented here on this website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder.Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
Regards,
Sara Luker

What To Do While You Wait ~ #4 LOOKING INTO PROGRAMS ~ INTRODUCTION:

< My Thoughts >  Parental concerns, the severity of a child’s behavior, the amount of support, the family has, or doesn’t have, all contribute to the family making the choice of  becoming isolated or seeking help. Help can come from Programs, Therapies, & other Interventions.

Even if your child hasn’t been diagnosed yet, s/he may be eligible for Early Intervention Services. The IDEA Law says that children under the age of 3 years old who are at-risk for having developmental delays may be eligible for services.

Some programs are expensive, so understand your child well enough to know what things may work and what may not. While you are waiting, try to discover who your child is behind the autism. There is danger in believing that ‘one-program-fits-all’ because each child is so different in their abilities and their challenges. That’s just a reality. 

When trying to get to know the child behind the autism, understand that s/he may be showing symptoms of more than one problem, challenge, or disorder. Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay because clinicians will know how to sort everything out. Guard against becoming convinced that a program is going to ‘fix’ your child’s autism. 

Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
       In other words…
 
       What is the most frightening
       or destructive thing going on
       right now in your child’s world?

Much of the diagnostic information will come from parents. So once again, be sure that you know your child well enough to give insightful but honest responses to all inquiries. If your child is in school, they will have critical input. Video taping (most smart phones have apps) can show what you may have difficulty expressing in words. You are looking for a way to ease the current situation. This may take time and diligence. 

Prioritize. Is your child repeatedly doing weird things? Is s/he refusing to eat to the point where it is life threatening? Is s/he biting you, screaming and kicking in walls? Tantrumming, having meltdowns and causing self-abuse? Is s/he a danger to his or herself or others? Then your child is asking for help the only way they are able to. 

​​There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. Remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation.
​
Here are some of them described by the Centers for Disease Control & Prevention – Retrieved from: https://www.cdc.gov/ncbddd/autism/treatment.html

• Early Intervention Services; these services are provided through your state & may provide testing or evaluation for your child. This may be your first step.
• Treatments; some different types of treatments are Behavior/Communication; Dietary; Medication; Complementary & Alternative Medicine.
• Behavior & Communication; Applied Behavior Analysis (ABA), Developmental Individual Differences Relation-Based-Approach (aka DIR/Floortime), Treatment & Education of Autistic & related Communication-handicapped Children (TEAACH), Occupational Therapy (OT), Sensory Integration Therapy for Sensory Processing Disorder (SPD), Speech Therapy, Picture Exchange Communication System (PECS).
• Dietary Approaches; many of these treatments are unproven. But, a medical doctor may recommend biomedical intervention after testing your child for food allergies, gastrointestinal problems, and/or nutritional deficiencies.
• Medication; there are no specific medications for ASD, only medications to treat related symptoms such as energy levels, inability to focus, depression, and/or seizures. Most often these are costly substance controlled drugs which need extremely careful monitoring for dosage and side effects.
• Complementary & Alternative Medicine (CAMs); these are treatments outside those typically recommended by the medical profession and without rigorous scientific research. Such as – auditory integration therapy, facilitated communication, gluten/casein-free diets, hyperbaric oxygen therapy, probiotics, acupuncture, vitamin supplements, chelation therapy, immunoglobulin infusions, animal therapy, massage therapy, creative therapy (art & music) etc.

END of #4 INTRODUCTION: What to do While You Wait with < My Thoughts > by Sara Luker
​

This POST is about #3C  "What to do While You Wait..."SOCIAL/PERSONAL AWARENESS & DAILY LIVING SKILLS…< My Thoughts > 
 
Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns. Video tape (phone App) what you are seeing and how your child acts throughout the day/night. 'Seeing is believing' for someone new to your child.
 
Prioritize your child's 'needs' and your 'wants'. Try new things... like teaching your child age appropriate 'developmental skills' that are non-invasive. See what works and what doesn't. Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'post' I give you some ideas on where to begin to discover who your child is 'behind' the autism. 

HOW TO FIND THE INTERVENTION OUTCOME YOU ARE LOOKING FOR…
 
Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
In other words…
 
What is the most concerning thing that is going on right now in your child’s world?
 
Recent studies show the following things worry parents the most…
 
Lack of… 

• gross motor skills
• speech/language communication
• cognition
• social/personal awareness
• daily living skills

SOCIAL/PERSONAL AWARENESS –

< My Thoughts > Babies begin being ‘social’ by interacting with those around them. They smile, coo, and show excitement when they recognize someone. They should also learn to calm themselves down when anxious or upset. Children with autism may not respond this way. That’s where the parent can try to teach or encourage this social/emotional development.

By encouraging play, acting animated, happy; even singing and dancing around your child can be a place to start. Add new toys while letting him/her cling to the favorite toys. Encourage independence by helping the child dress and undress at appropriate times. Allow for favorite shirts, colors, or styles. S/he may not like tight or heavy clothing. Tags are a definite ‘no – no’ for most children with Sensory Issues.

What to do while you wait? A favorite of parents and teachers for learning self-awareness would by teaching social skills through ‘Social Stories’. Carol Gray was the official originator of ‘Social Stories’ and you can find much online to learn more about her methods. Versions of these teacher/parent–made stories have been used the world over, in some form or another. You don’t have to take a course or follow a certain protocol in order to create them. 
​

​Social Stories
 
Crozier & Tincani (2007) tell us that “a ‘social story’ is a short story written for an individual. The story describes a specific activity and the behavior expectations associated with that activity.” You can also create a story to introduce ‘novel’ events such as Holiday gatherings, birthday parties, or other events.
​
For instance if you are going to take your child to the park, or to the store, you could create a little story to show them what to do or expect to see there. Here is an example of what the authors used as ‘Social Story’ text for a preschool boy who was mostly reclusive, but became animated during Preschool snacktime.

            My name is Daniel
            We have snacktime at school
            Friends talk & share snacks
            Some friends say “Hi”
            Some friends ask for a drink
            Some friends ask for more snacks
            I can say “Hi” to my friends
            I can ask for a drink
            I can ask for more snacks
            Friends are happy when we talk at snacktime!

The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also many need to have verbal prompts added for emphasis and to increase success.

​< My Thoughts > Use your creative license here. Children with autism or autism-like behavior take in a lot more than parents are aware. They often use peripheral vision to watch your every move, but you’ll never catch them looking at you. So, create this social stories within his or her view. Best of all scenarios would be to have them choose a picture or help you in some way, however small. Of course, the latest twist on Carol Gray’s Social Stories is the APP available so that you can create, present, and store your child’s stories on your iPad or iPhone. Smiles.

Reference used here was:
Crozier, S & Tincani, M. (2006). Effects of Social Stories on Prosocial Behavior of Preschool Children with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V37, p1803 - 1814.

​DAILY LIVING SKILLS –
< My Thoughts > Developing ‘daily living skills’ and developing ‘self-awareness’ go together hand-in-hand. This becomes one of the trickier tasks to teach with any child. So, before teaching/learning ‘daily living skills’ one must determine if the child has ‘self-awareness’

​If your child responds to posters or books, you might try creating a Visual Daily Schedule to teach ‘Daily living skills’. Here are some ideas, many more online. Of course, social stories and verbal prompting or other visual and auditory cueing is usually necessary. I’m never implying that your child will spontaneously or independently use these visuals to dress or bathe, but that is the ultimate goal. Smiles.

Reference used here was:
Duff, C. & Flattery Jr., J. (2014). Developing Mirror Self Awareness in Students with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V44, p.1027 - 1038.

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Note: Next in the What to do While You Wait is - #4 Programs, Therapies & Interventions. Enjoy!
Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
 
Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder. Know that I, Sara Luker, receive neither financial rewards nor other interests derived from this website. This has been created purely for the readers sharing information and for your enjoyment. 

Regards,
Sara Luker

COGNITION -
Cognition requires knowledge & understanding of what one is experiencing in their environment. Shows ability to use working memory, make judgments, reason, problem solve & make decisions.
====================================
#3B -  What to do While You Wait... COGNITION (THINKING SKILLS) with < My Thoughts > by Sara Luker.

Try working on these SKILLS with your child:
           Preceded by:
                    #1 What to do While You Wait... Red Flags & Parental Concerns CHECKLIST
                    #2 What to do While You Wait... Doctors & Diagnosis & Denial – WHAT TO DO NEXT…
                   
< My Thoughts >  "While You Wait..."
 
Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns. Video tape what you are seeing and how your child acts throughout the day/night. 'Seeing is believing' for someone new to your child. 
 
Prioritize your child's 'needs' and your 'wants'. Try new things... like teaching your child age appropriate 'developmental skills' that are non-invasive. See what works and what doesn't. Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'page' I give you some ideas on where to start to discover who your child is 'behind' the autism. 

HOW TO FIND THE INTERVENTION OUTCOME YOU ARE LOOKING FOR…
 
Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
In other words…
 
What is the most concerning or destructive thing that is going on right now in your child’s world?
 
Recent studies show the following things worry parents the most…
 
Lack of… 

• gross motor skills
• speech/language communication
• cognition
• social/personal awareness
• daily living skills

=====================================
#3B What to do While You Wait...  Work on these SKILLS... COGNITION...
     a series of suggestions with < My Thoughts > by Sara Luker.
 
COGNITION –

In the ordinary world, ‘cognition’ or the ability of the child to make sense of their world by asking and answering questions, appropriately. By participating in a back-and-forth conversation, appropriately and by learning through active listening and paying attention. Another way to show ‘cognition’ is by showing ability to use short-term and long-term memory; as well as being able to understand the world from someone else’s perspective.
  
Most studies show that with early identification and intervention, children with autism, both verbal and non-verbal, have made cognitive gains with help. These gains can be made by helping the child expand and explore experiences in their natural setting (at home and community).

< My Thoughts >   ...While you're waiting...
for the world of doctor’s appointments, consultations, and program possibilities to open up for you... you might try some of these suggestions... Smiles.

The CDC Milestone Tracker suggests some of the following activities to do with your child:

2 – months:

• Talk, read, sing to your baby
• Encourage your child to play peek-a-boo
• Hold a toy or rattle so baby can reach for it

4 – months: All of the above, plus…

• Place toys near your child so s/he can reach or kick them
• Provide opportunities for your child to safely explore his/her surroundings

6 – months: All of the above, plus…

• When your baby looks at something, point to it and talk about it.
• When s/he drops something, pick it up and give back. Teaches cause/effect

9 – months: All of the above, plus…

• Teach more cause/effect by rolling a ball back & forth saying “My turn” … “Your turn”
• Say what you think your baby’s feeling… “Are you hungry?” “Are you sleepy?”
• Try to stick to an established daily & nightly routine

1 – Year: All of the above, plus…

• Help your child follow simple directions “Pick up toy”
• Show your child how to point to what s/he wants, using pointer finger
• Build on what your child is trying to say… “Yes, that’s a big blue truck.”

18 – Months: All of the above, plus…

• Help your child know what ordinary things are… spoon, cup, toy…
• Help your child point to body parts
• Help your child follow simple commands

2 – Years: All of the above, plus…

• Help your child learn & complete rhymes
• Teach your child to build a tower with more than 2 blocks
• Help your child sort by colors & numbers

3 – Years: All of the above, plus…

• Give your child the opportunity to work toys with buttons, levers, & moving parts
• Give your child the opportunity to work 2 – 4 piece puzzles
• Give your child the opportunity to copy shapes with a pencil or crayon

4 – Years: All of the above, plus…

• Give your child the opportunity to say first & last name & phone number
• Give your child the opportunity to sing songs from memory
• Give your child the opportunity to tell stories

5 – Years: All of the above, plus…

• Give your child the opportunity to learn name, parent’s name, address & phone number
• Give your child the opportunity to have a ‘play’ date
• Give your child the opportunity to explore his or her interests

Retrieved from: CDC Milestone Tracker Checklist, pdf. on Learn the Signs. Act Early. (cdc.gov/MilestoneTracker).
==========
Note: Next in the What to do While You Wait is -  #3C Social/Personal Awareness & Daily Living Skills
Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
 
Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder. Know that I, Sara Luker, receive neither financial rewards nor other interests derived from this website. This has been created purely for the readers sharing information and for your enjoyment. 

Regards,
Sara Luker
​