#4  "What to do While You Wait, Investigate!" – Programs, Therapies, & Interventions, with < My Thoughts > by Sara Luker
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​From GALLERY of BOOKS on Autism; Focused excerpts examples of "What to do While You Wait" concerning – #4 Programs, Therapies, & Interventions.
 
Know Autism – Know Your Child: With < My Thoughts > by Sara Luker; 2021
 
Just so you know what others have faced, and that you are not alone… here are a few focused excerpts from my Extended Book Reviews with < My Thoughts > by Sara Luker.

Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns.

Video record (using phone app) what you are seeing and how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child. Prioritize, try new things that are non-invasive and see what works and what doesn't. This will also help you find out what your child responds to. Some learn best by hearing, seeing, or doing.

Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'page' I’ll give you some ideas on where to start to discover who your child is 'behind' the autism. 
 
What to do while you wait ~ Consider how the following excerpts may define #4 Programs, Therapies, & Interventions for you. How can you become better prepared to approach these topics, and what have you already tackled? What would you like to clarify, or better understand about your world of autism?
 
***Please ~ READ more in-depth information with Peer-Reviewed Journal articles with References, in Website MENU #4 Programs, Therapies, & Interventions, #4A Introduction, #4B ABA, DIR, OT, PECS, DRI, SPD, ST, TEAACH, CBT, FC; #4C Creative Therapies, CAMs, Alternative Meds, Diet, Animal Assisted Therapy, Acupuncture, Auditory Integration Therapy, Chelation Therapy, Hyperbaric Oxygen Therapy, Immunoglobulin Infusions, Massage Therapy, Physical Activity Program, Stem Cell Therapy, Vitamin Supplements.
 
Note: SEE DISCLAIMER BELOW Extended Book Review Previews
 
Here is a ‘peek’ into the websites Extended Book Reviews. These will lead you to more information about your concerns. READ real stories from real people living in their world of autism. Find LINKs on the MENU listing GALLERY of BOOKS and/or find BOOKs by TITLE.
 
< My Thoughts >       “Programs, Therapies, & Interventions” 
 
Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence as ‘autism’ implies ‘cure’ or ‘long-term’ effect. That is NOT my intention here.
Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.

Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism by Keith Ambersley, eBook 2013 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (44% indicates the eReader book location, instead of page reference.)
 
44%     Early intervention was the beginning point for me. I never appreciated the value of early intervention until my wife explained it to me a couple of times.
 
45%     The general rule of early intervention for children with autism is “the earlier, the better.” When in doubt, get your child diagnosed! Embark on an early intervention plan as soon as possible. This has been our motto from day one.
 
Early intervention is about doing a lot of homework to build awareness, then turning around and doing the work to make it come together in a meaningful and practical way.
 
A lot of the learning steps that I thought were so rudimentary I had to repeatedly rehearse again and again. It really is hands-on all the time, even when I did not have the energy and sometimes the patience for it.
 
Fathers can overcome the feeling of frustration by just stepping back go for a long drive, walk or just do something else to change the focus.
 
Early intervention is not an event you wait for to happen; it is a step that you have to plan around so that you can hit those critical milestones.
 
Mistakes are made because parents go to the first doctor, therapist, psychologist, specialist and we forget to get a second opinion to verify what we have been told. Always ~ trust, but verify!
 
Essentially, early intervention is the interruption of delays in patterns of growth and development which are not consistent for the child’s age.
 
Research has documented that early intervention (after diagnosis) is critically important and is best engaged during a very short window of time for maximum results.
 
We did not have a clue at the beginning of this process! A lot of our efforts were ineffective. On many occasions we just had to rely on word of mouth from other parents in our network.

Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal, by Kerry Cohen, eBook 2011 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (4% indicates the eReader book location, instead of page reference.)
 
 4%       I don’t believe in the small-window-of-time theory any more than I believe that all parents need to be anxious to change how their children interact with the world.

Any more than I believe a child with autism can stop being autistic through therapy, or that autistic people don’t come to their own understandings once they are ready, regardless of therapies, just on a different timeline from others.

Nobody seems to think about the harm that can come to a family, to a child, from pushing them into the world all special needs families must enter, one full of evaluations and interventions and schedules and do something fast now – quick, or else.

The overwhelming pressure to follow proven scientific guidelines about early intervention often steals parents’ courage to follow their instincts and blinds them to their baby as just that, a baby.

This isn’t cancer, after all, with cells that will grow and spread. This is a neurological difference. A difference that will not ever become as not different as those early-intervention pushers seem to want everyone to believe.

​The Autism Mom’s Survival Guide (for Dad’s, too!): Creating a Balanced and Happy Life While Raising a Child with Autism by Susan Senator, eBook 2011 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (7% indicates the eReader book location, instead of page reference numbers).
 
7%   There is nothing I want more than to relieve those early days, enjoying my son Nat just as he was. I wish that I had known enough to get him into Early Intervention, to start him in some kind of hard-core intensive preschool to boost his development and skills.

I wish I could have been whole enough to embrace every Nat-ism, to be proud of his differences, and to accept his unique, atypical development and way of doing things. I think a lot of autism parents come to feel that way.

​I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds Her Voice by Elizabeth M. Bonker & Virginia G. Breen, eBook 2011 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (12% indicates the eReader book location, instead of page reference numbers).
 
12%     Like many parents of special needs children, I set the goal to have her mainstreamed in our local public school. I asked them, “Would you rather pay a little more now or a lot more for special education until she is twenty-one?” I thank God, they saw it my way.
 
For three years, from the ages of three through five, Elizabeth underwent an intensive program based on the theory of Applied Behavioral Analysis (ABA) in our home, therapists paid by our school district implemented the program, teaching Elizabeth basic skills like identifying colors and objects. They taught her in very small increments, with rewards for each accomplishment.
 
< My Thoughts >       “… Elizabeth underwent an intensive (ABA) program...”
 
The Applied Behavioral Analysis (ABA) method was developed by (University of California at Los Angeles) UCLA’s Dr. Ivar Lovaas, a behavioral psychologist. Lovaas believed that social and behavioral skills could be taught, even to profoundly autistic children, using his method. For very young children, ABA is more like play therapy.  For older children the therapist asks a child for a particular behavior. If the child complies, s/he is given a reward in the form of a tiny food treat, a high five, or another desirable reinforcer. Eventually, the reinforcer is phased out and the child is considered no longer challenged in this area.
 
In addition, I would like to say that the family was very fortunate to have the school district provide this costly intervention as a ‘free’ program to Elizabeth. It could be that her school was linked to UCLA in some way, as they were the first to train therapists for Lovaas’ ABA program.
 
12%     A full book could be written about our three years running an ABA program in our home. We’ve been eternally blessed by all who worked so hard and lovingly on our ABA team. They gave Elizabeth wings to fly.

A Child’s Journey Out of Autism: One Family’s Story of Living in Hope and Finding a Cure by Leeann Whiffen; eBook 2009 Edition; an Excerpt from Extended Review, with < My Thoughts, by Sara Luker >
 
Note: (35% indicates the eReader book location, instead of page reference numbers).
 
35%     The doctor recommends some lab tests, including a hair analysis, urine organics acids test, Complete Blood Count (CBC), RBC minerals (measures nutrient mineral levels vs. toxic mineral levels), liver panel, and a thyroid function test. He also recommends placing Clay on a strict gluten- (wheat) and casein (milk) free diet. In addition, there are supplements he recommends for Clay.
 
“Sean,” I say to my husband on the way home, “one of my biggest concerns is that there haven’t been any ‘gold standard’ studies proving the triggers he mentioned are the culprits.”
 
< My Thoughts >       “…‘gold standard’ studies…”
 
‘Gold standard’ studies, diagnoses, procedures which have repeatedly had the same scientific results, over time, with randomized, controlled trials, over the population designated. The key question is, but will it work for your child? Often times, it is ‘trial and error’, therefore you will want the opportunity to have a ‘short-term’, low-cost trial period. Autism for some, is a business. 
​

​What Color is Monday?  How Autism Changed One Family for the Better by Carrie Cariello, eBook 2015 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (12% indicates the eReader book location, instead of page reference numbers).
 
12%     Even though I knew that Jack could hear someone open a bag of animal crackers from three rooms away, I fostered a tiny seed of foolish hope that maybe, just maybe, he was hearing impaired and that all of this could be solved with a simple crash course in sign language. Nope, not deaf.
 
By the time Jack was sixteen months, we had a speech therapist and a special education teacher working with him weekly and we were still having him tested to figure out the source of his language delay.
 
< My Thoughts >       “…we had a speech therapist…”
 
Parents often ask me – “Why spend time with a speech therapist when he doesn’t talk?” Speech therapists work on so many other forms of communication and social skills. For example, when playing a simple game, the therapist teaches ‘joint attention’ through turn-taking, waiting for the child to ‘initiate’ the next move, and to show ‘anticipation’ of what is going to happen next. To get a sense of whether or not the child can ‘predict’ what others are thinking or going to do, that will either help them or harm them.
 
Another thing that a speech therapist has the qualification to do, is a series of formal or informal assessments of the child’s ‘receptive & expressive’ language. ‘Receptive’ language is basically recognizing the words they hear.  While ‘expressive’ language is being able to say the words they need to express themselves.

The ABCs of Autism Acceptance by Sparrow Rose Jones, eBook 2016 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (56% indicates the eReader book location, instead of page reference numbers).
 
Q is for Quiet Hand Getting Loud –
 
56%     Quiet Hands. If you’re Autistic, you are probably familiar with the phrase. It’s the admonition to stop fidgeting, stop flapping, stop moving, stop what’s called “stimming.” But “quiet hands” is not acceptance. It is part of the goal of so many Autism therapies. The dirty truth about “quiet hands” and other attempts to train the Autism out of us is that these sorts of therapies – are not really helping us.
 
57%     I am a big fan of Rapid Prompting Method (RPM), Facilitated Communication (FC), typing or pointing at a letter board to communicate. I love to read the words of those who communicate with their hands. And one thing I have noticed many of those folks saying is that they can only communicate if they are allowed time to stim in between typing.
 
Cardinal & Falvey (2014) explain that Facilitated Communication (FC) is a process to initially encourage communication in the form of prompts, supports, or stabilizing of the hand or arm. This would then, after becoming successful, be faded to the child making the choice independently. Fading support also minimizes the threat of facilitator influence on the writer/speaker.
 
The communication partner provides support in a variety of ways, perhaps emotional support to encourage communication, or help to focus on the keyboard, or desired words. Despite the challenges to the method, many find that with refining their techniques, individuals are able to ensure authenticity of authorship of the typed message. Allowing them to write their own stories, and for them the controversy has ended.
 
< My Thoughts >       “facilitated communication…” 
 
These authors found that the body of research which validates Facilitated Communication (FC) is growing. Methodologies used have appeased many critics. For example, this study used video eye-tracking of the FC user’s eye gaze to verify that the individual letter, or series of letters, was truly targeted by the individual.

For clarity, they say, not everyone becomes independent at typing their own messages. Some, must continue to point, use a pointer, or have assistance pointing to words on a chart or keyboard. But, the ability to become successful at writing messages, authors say, has less to do with intellectual capacity and more to do with fine motor issues. 

Note: Read more about Rapid Prompting Method (RPM): Developing Communication for Autism Using Rapid Prompting Method: Guide for Effective Language by Soma Mukhopadhyay; Paperback 2013.

Making Peace with Autism: One Family’s Story of Struggle, Discovery & Unexpected Gifts, by Susan Senator, eBook 2006 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (9% indicates the eReader book location, instead of page reference numbers).
 
9%     As for toys, he would set up his Fisher-Price dolls in a perfect line, but then he would simply stare at them. and suck his thumb. There they stayed on his rug, like little soldiers forever waiting for the call. I would show him how to do things time and time again, but it never took.
 
< My Thoughts >    “I would show him how to do things time and time again, but it never took.”
 
Perhaps it was too soon, but Susan’s wonderful intuition was at work here. She tried to engage him where he wanted to be; on the floor.
 
‘Floortime Play-therapy…’  Retrieved from – https://www.stanleygreenspan.com/
‘Floortime’ is a comprehensive program for infants, young children and families facing a variety of developmental and learning challenges. The program is called ‘Floortime’ because you follow the child’s lead, getting down on the floor when they do.

​The whole family can learn to join in the child’s world (a little island on the floor), thus leading them to join into the shared world the family lives in. This will help them master their functional and developmental capacities through ‘shared attention’ and by beginning in ‘engagement’.

Paula’s Journal: Surviving Autism by Stephanie R. Marks, eBook 2012 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (6% indicates the eReader book location, instead of page reference numbers).
 
6%       After their telephone conversation, Mom tried to explain it to me. I couldn’t understand. How could you point letters out on a board and get anywhere? So, we had a meeting with Ellie, and then it started to make sense. After I saw the (Facilitation) board, it all made sense.
 
The board was 9 x 11 inches and set up exactly like a (typing) keyboard. First Ellie showed me how she helped another person use the technique.
 
Ellie would support that person’s wrist while he pointed out each letter to form words and sentences.  It looked so easy!  But it wasn’t.  It was hard!
 
Rudy (2016) says, “Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing in unassisted typing.”  “To prove that the ‘typer’ is, indeed, typing his own thoughts… the ‘typer’ is asked to answer a list of questions that the supporter could not possibly know the answers to. (And, requiring a more complex answer than yes/no.)  She also cautions that “If you do try FC, be sure to investigate the provider and the therapist thoroughly.”

5%       Trying to facilitate made me feel like I was showing all my inner being. I tried it with Ellie. I couldn’t do it. This was the first time I had really had a chance to communicate with anyone, and it felt so strange! 
 
Finally, we had to stop because I started screaming out of fear. I was so horrified!
 
Later that night, after I had calmed down, Mom got out the board Ellie had given us, and we sat down together and tried to facilitate.  I could not believe how wonderful it was to talk to Mom!
 
All those years of loving and not being able to chat. Today I have been liberated, but the very thought of all those years of not being able to talk to Mom is unbearable.  So many moments, lost forever, never to be recaptured. 
 
We facilitated most of the night. It was so easy to facilitate with Mom. I didn’t realize it then but it was a matter of trust. 
 
6%       But I still could not facilitate with Ellie. I did not know her well enough yet. After I got to know her and to trust her, it was easy to facilitate with Ellie. It just took some time to build up the trust.  Thank you, Ellie.  Click clack. Click clack. Click clack.

​Ido in Autismland: Climbing Out of Autism by Ido Kedar, eBook 2012 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (7% indicates the eReader book location, instead of page reference numbers).
 
7%       As Ido’s mother, I welcome you to Ido’s world. My now fifteen-year-old son, who has autism, emerged from this imprisoning silence after learning to communicate his thoughts by typing or by pointing to letters on a board.
 
8%       Until he was seven, Ido had no means to show anyone that he was intellectually intact. His teachers and myriad experts assumed, based on his difficulty following directions, lack of speech and odd behaviors, that his intellect and knowledge matched his actions.
 
12%     When Ido was eight or nine years old, we were told by a specialist that we should accept the fact that he was not likely to progress much more.
 
Certainly it was never suggested to us that he might blossom if we adopted and entirely different approach, by offering him a form of communication he could more easily access through typing or letter board.
 
24%     As Ido’s letter board skills progressed, it became harder and harder to deny that he was communicating.
 
25%     In the fifth grade Ido was finally removed from his remedial autism class and sent to another school with a “high functioning” autism class. He finally had his first opportunity to receive an actual academic education in school.

The Long Ride Home: The Extraordinary Journey of Healing That Changed a Child’s Life, by Rupert Isaacson; eBook 2015 Edition; an Excerpt from Extended Review, with < My Thoughts > by Sara Luker
 
Note: (38% indicates the eReader book location, instead of page reference numbers).
 
​38%     With the sheer numbers of kids being diagnosed with each passing year, a lot parents were finding themselves in the same boat as us, bumping their noses against the limitations of the orthodox approaches and looking for alternatives.

Anderson & Meints (2016) let us know that Equine-assisted activities and therapies are increasing in popularity for treatment of ASD symptoms. Therapeutic Riding (TR) is designed for the purpose of contributing positively to the cognitive, physical, emotional, and social well-being of individuals with special needs. In teaching riding skills, TR emphasizes – attention, control, focus, and sensory management; as well as nonverbal and verbal communication.

The participants did ‘horsemanship activities’ in groups with a set routine for each activity. Such as, horse grooming, ‘mucking’ out stalls, feeding & watering horses. They learned to use tools such as a broom & shovel, bucket & pitchfork; using wheelbarrows while moving feed & hay. They also had relaxation times, were involved in lessons like tacking-up, leading horses to the arena, learning to mount, dismount, and untack. They spent the most time doing those tasks which they seemed to enjoy the most.

This real-life outdoor activity proved beneficial to enabling participants to gain a better social understanding. It allowed them to become more self-aware and improve communication and body language. They also learned to gain the trust of the horses, which demonstrated learning ‘theory of mind’ (ToM) in a real-life setting.
 
REFERENCES from other sources –

Anderson, S., Meints, K. (2016). Brief Report: The Effects of Equine-Assisted Activities on the Social Functioning Children & Adolescents with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V46, p3344-3352.

Cardinal, D., & Falvey, M. (2014). The Maturing of Facilitated Communication: A Means Toward Independent Communication; Research & Practice for Persons with Severe Disabilities; V39(3); p189-194.

Rudy, L.J. (2016).  Does Facilitated Communication Really Work?  Retrieved online from –  https://www.verywell.com/facilitated-communication-and-autism/

DISCLAIMER

The content of this website material, digital or in any other form does not represent medical advice; nor does it constitute medical suggestions in any way. The material, including any downloadable parts, is for informational and/or educational purposes only. Your download and/or use of this material indicates your acceptance of this disclaimer.
 
As an autism mom, as an educator with a current State Teaching License (ending 2023), and a 2011 Master’s Degree in Special Education, this author shares her personal study, opinions, and experiences of over 30 years concerning Autism Spectrum Disorder (ASD), and related topics. The author’s mention of products, services, treatments, and interventions are not to be considered an endorsement, thereof. Nor does the author represent that any described products, services, treatments, and/or interventions expect to ‘cure’, or have any ‘long-term’ positive effect on a disorder or disease.

Furthermore, understand and agree that this material is not intended as a substitute for consultations with licensed healthcare professionals. Nothing in this material is expected to diagnose, treat, imply cure, or prevent any condition, disorder, or disease.  Any errors or omissions in the available subject matter, Units, Chapters, References, Charts, Tables, Appendices, LINKS, and/or other downloadable or non-downloadable materials are unintentional. Revisions in the material may be subject to change without notice.
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​#4A More Information on Programs, Therapies & Interventions with < My Thoughts > by Sara Luker.

The following Interventions & Programs are 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.

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< My Thoughts > #4A
Start gathering information about what Services and Interventions are out there. Here is one step 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.

=================

​MEDICATION –

< My Thoughts > … What you may find under MEDICATION is that 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.

Deb, et al. (2001) discuss a study where 100 participants, ages 16 – 64, considered to have an intellectual disability, were shown to have their severe behaviors reduced with the use of psychotropic medication. This challenging behavior was rated as severe and frequent. Many of the behavioral disorders on the list were also seen in persons with autism. They were –

• Aggression
• Destructiveness
• Self-injury
• Temper tantrums
• Overactivity
• Screaming/shouting
• Scattering/throwing objects
• Wandering
• Night-time disturbances
• Objectionable personal habits
• Antisocial behavior

The medications used were antipsychotics, antidepressants; along with anti-epileptic drugs, as 24 of the participants had epilepsy. 

< My Thoughts >       Parents can expect that sometimes doctors will prescribe a drug to reduce your child’s symptoms of irritability and/or aggression. The original intent of the physician is to get your child to a place emotionally where behavioral treatment can begin. Then after behavioral treatment is in place, learning can usually begin. Sonny had been on one such drug so long (years & years) that when we tried to transition him off it was clear that his body couldn’t function without it. This of course was before he had a correct diagnosis for epilepsy, which looked to everyone like tantrumming and meltdown behavior. When in fact, he was experiencing a seizure. Scary, huh?

Lenne & Waldby (2011) say that ASDs lack a biological marker or set of pathology tests to aid in the diagnosis process. Pediatricians cannot send off blood samples to verify their intuition about a certain child. Even with the available observational diagnostic tests, ASDs are difficult to categorize.
Diagnostic tests referred to in this study were:

• ADOS: autism diagnostic observation schedule
• CARS: childhood autism rating scale
• ADI-R: autism diagnostic interview-revised

​These authors go on to say that pediatricians are faced with the complexities and inconsistencies of symptoms seen on the autism spectrum. And, those doctors would like to see themselves in the role of ‘facilitator’, helping parents after giving them the diagnosis. But doctors say, “In the ‘real-world’ we can only do the paperwork and refer them on to someone else.”
​
< My Thoughts > This pretty much says it all…doesn’t it? 

Floyd & McIntosh (2009) inform us that while behavioral and educational therapies are generally considered the most appropriate first-line interventions for individuals with ASD,

psychopharmacological intervention is often required. They found that over the past 10 years, antipsychotics, antidepressants and anti-epileptic drugs were used to treat the core features and associated symptoms of autism. The purpose for physicians subscribing these meds was to reduce the deficits in socialization, communication, repetitive behavior and maladaptive functioning in the child or adolescent with autism.

Medications, these authors caution, are considered to only be a short-term treatment. Or, to ‘boost’ the effects of other meds. And, the reduction or withdrawal of that therapeutic dosage of medication might result in relapse. Also considered was that these psychotropic drugs may have maximum side-effects and minimum effectiveness.

< My Thoughts >       I am not including the brand name of the drugs used in these studies, due to the slight chance that someone may interpret that mention as an endorsement or recommendation. Hope you understand. Thanks.
​
References used:
 
Deb, S., Thoman, M., Bright, C. (2001). Mental Disorder in Adults with Intellectual Disability; Journal of Intellectual Disability Research; V45, Part 6, p506-514.
 
Floyd, E. & McIntosh, D. (2009). Current Practice in Psychopharmacology for Children & Adolescents with Autism Spectrum Disorders; Psychology in the School; V49:9.
 
Lenne, B. & Waldby, C. (2011). Sorting Out Autism Spectrum Disorders: Evidence-based Medicine & the Complexities of the Clinical Encounter; Health Sociology Review; V20:1, 70-83.

​DIETARY APPROACHES –

< My Thoughts > … What you may find under DIETARY APPROACHES is that many of these treatments are unproven. Some professionals even put dietary approaches in the category of COMPLEMENTARY & ALTERNATIVE  MEDICINE (CAMs). But, a medical doctor may recommend biomedical intervention after testing your child for food allergies, gastrointestinal problems, and/or nutritional deficiencies. So this becomes somewhat of a ‘grey’ area when finding ethical and well founded approaches to programs and treatments. Just saying.
​
Marshall, et al. (2014) wrote a current paper which identifies, reviews, and analyzes early interventions for children less that 6 years old with ASD and feeding difficulties. They looked at interventions successful with ways to increase desirable mealtime behavior.

This reminds us that feeding and eating difficulties can lead to dangerous weight loss, malnutrition, iron deficiencies, anemia, gastrointestinal issues, and failure to thrive. And, that the current literature suggests that successful interventions for children with ASD and feeding difficulties is limited. One reason seems to be the ‘mismatch’ between the intent of the intervention and the actual outcome. In other words, the conclusions are unclear. As a result of the intervention, have they changed the mealtime behavior, or decreased the child’s food selectivity, or have they been successful increasing intake volume? These questions are left unanswered.

< My Thoughts > because of the above confusing conclusions, I will try to tackle both feeding/eating behaviors, food selectivity, and increasing intake volume. Included for good measure will be Bacteriotherapy and Immune Dysregulation.

Mari-Bauset, et al. (2014) tell us straight off that… “Few studies can be regarded as providing sound scientific evidence about dietary changes and autism.” They recommend that a child’s diet should be only be changed after the diagnosis of an intolerance or allergy to foods containing the allergens excluded in gluten-free, casein-free diets.

One of the reasons that there are ‘few’ sound studies, according to Pennesi & Klein (2012) is that staying on a ‘strict gluten-free & casein-free diet’ requires ‘strict’ implementation. Because the child may be with others during the day, or from time-to-time, s/he may be getting foods which are not allowed. Therefore, the data cannot always be authenticated. Then there is also the confusion between whether the child has gastrointestinal abnormalities or an immune system dysfunction.

They point out that the child may have sensitivities or social behaviors related to food. Thus these authors feel that the child must be diagnosed and certain things ruled out, before treatment can begin.

< My Thoughts > Parents often feel that this is a ‘non-invasive’ approach to solving some of their child’s problems. But Katuzna-Czaplinska & Jozwik-Pruska (2016) caution that the child with ASD may already suffer from nutritional and metabolic problems which may be made worse by reducing nutrient intake without proper supplementation or professional advice.

References used:
 
Katuzna-Czaplinska & Jozwik-Pruska (2016). Nutritional Strategies & Personalized Diet in Autism; Choice or Necessity?; Food Science & Technology; V49; p45-50.
 
Mari-Bauset, S., Zazpe, I., et al. (2014). Evidence of the Gluten-Free & Casein-Free Diet in autism Spectrum Disorders; Journal of Child Neurology; V29:12.
 
Marshall, J., Ware, R. Ziviant, Jl, Hill, R., Dodrill, P. (2014). Efficacy if Interventions to Improve Feeding difficulties in children with ASD: A Systematic Review and Meta-analysis; Childcare, Health & Development, Austrailia; V41:2.
 
Pennesi, C. & Klein, L. (2012). Effectiveness of the Gluten-free, Casein-free Diet for Children Diagnosed with ASD; Nutritional Neuroscience; V15:2; p85-91.

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#4B Programs (1-4), Therapies & Interventions with < My Thoughts > by Sara Luker

​The following is described by the Centers for Disease Control & Prevention – Retrieved from: https://www.cdc.gov/ncbddd/autism/treatment.html
 
This post is focused on…

• Behavior & Communication; Applied Behavior Analysis (ABA), Developmental Individual Differences Relation-Based-Approach (aka DIR/Floortime), Occupational Therapy (OT), Picture Exchange Communication System (PECS).

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#4B (1 - 4 )PROGRAMS, THERAPIES & INTERVENTIONS ABA, DIR, OT, PECS;
​with < My Thoughts > by Sara Luker:

​The following programs, therapies & interventions are described in alphabetical order, without intent or suggestion of status or effectiveness –

< My Thoughts > … 8 PROGRAMS you may find under BEHAVIOR & COMMUNICATION –

1. Applied Behavior Analysis (ABA)
2. Developmental Individual Differences Relation-Based-Approach (aka DIR/Floortime)
3. Occupational Therapy (OT)
4. Picture Exchange Communication System (PECS).
5. Relationship Development Intervention (RDI)
6. Sensory Integration Therapy for Sensory Processing Disorder (SPD)
7. Speech Therapy (ST)
8. Treatment & Education of Autistic & related Communication-handicapped Children (TEAACH)

< My Thoughts > Here are a few thoughts of parents, regarding early intervention programs.

Carlon, Carter, & Stephenson (2015) say that parents reported in a study of 62 parents that they didn’t pick a program on the recommendation of others. They felt there was enough ‘empirical’ information out their now to make an informed decision. This study found that the most frequently used programs… and these were often used simultaneously, were Applied Behavior Analysis (ABA), Relationship Development Intervention (RDI) & Complementary & Alternative Medical treatments (CAM); along with some support for Sensory Processing (sometimes called Sensory Integration Therapy).
 
Note: Understand that many of these programs have therapists holding long sessions in your home, while you are present. If you have siblings or other children present too, this can be problematic. Sometimes these program sessions can be also held at school with trained staff. The problem there can be that of ‘continuity’ and ‘fidelity’ to your child’s individual program. The staff may not be dedicated to that program alone, and/or may work with your child in a group setting. Also, there could be a lack of program continuity due to school holidays and extended breaks. Just saying

​#4C – INTRODUCTION to COMPLEMENTARY & ALTERNATIVE MEDICINE  (CAMs) with < My Thoughts > by Sara Luker
 
The following programs, therapies & interventions are described in alphabetical order, without intent or suggestion of status or effectiveness –
 
< My Thoughts >
 
**NOTE: Approach all of these Complementary & Alternative Medicine treatments with CAUTION. None have been approved for use for children and/or adults with Autism or Autism Spectrum Disorder and could be life threatening. I offer this only as an attempt to give you some information as to what you may hear or see when investigating Programs, Therapies & Interventions. A tip of the iceberg, so to speak. Now it’s up to you to investigate them thoroughly, before you move forward with a plan.
 
Protect your child and your wallet. And remember… that as well as creating a Therapy Program, the principal of the program has created a business which is bound by city, county, state, and/or federal business restrictions. This means that they must meet all professional standards, certification, and licensing requirements. It’s up to you to find out if they do. And… you are bound by any contractual agreements that you sign. Just saying… S.
 
COMPLEMENTARY & ALTERNATIVE MEDICINE (CAMs);
 
Such as –

1. acupuncture
2. animal assisted therapy
3. auditory integration therapy
4. chelation therapy
5. creative therapy (art & music & dance)
6. facilitated communication
7. hyperbaric oxygen therapy
8. immunoglobulin infusions
9. massage therapy
10. physical activity program
11. stem cell therapy
12. vitamin supplements

NOTE: Complementary & Alternative Medicine (CAMs POSTS 1 - 12) with < My Thoughts > by Sara Luker will be presented in separate posts, as follows –

​POST (1-2) Acupuncture, Animal Assisted Therapy 
POST (3-4) Auditory Integration Therapy, Chelation Therapy  
POST (5-6) Creative Therapy (art & music & dance & theatre),
Facilitated Communication,
POST (7-9) Hyperbaric Therapy, Immunoglobulin Infusions, Massage Therapy,
POST (10-12) Physical Activity Program, Stem Cell Therapy, Vitamin Supplement Therapy
 
ALSO, PROCEED WITH CAUTION. Complementary and Alternative Medicine (CAMs) treatments are still very controversial and may even be very dangerous. Before starting any treatment program, investigate thoroughly, and ALWAYS, ALWAYS talk to your child’s doctor first.

Complementary and Alternative Medicine: Definition –
According to Senel (2009) Complementary and Alternative Medicine (CAM) term is being used for defining health-related products and practices which are NOT part of conventional medicine. For example, herbal supplements, acupuncture, chiropractic manipulation; and more recently biofeedback and chelation.
 
Senel thinks that possibly disappointments with conventional medicine motivates people to try CAMs. Among the believers, she feels are those who ignore contradictive beliefs and lack of scientific inquiry. She thought the study reflected that the parents’ personal experience may have simply been about a change in diet, and/or increased exercise and/or relaxation. In other words, a more positive lifestyle change.
 
In the study mentioned here, parents reported that they were overall, very optimistic about this intervention. In study surveys, parents rated CAMs as either ‘improving their child dramatically’ or, ‘improving their child somewhat’. It was also stated that many of the requested parent surveys were not returned to the study, for whatever reason.
 
To learn more about CAM therapies, go to the National Center for Complementary and Alternative Medicine; https://nccih.nih.gov.
 
< My Thoughts > **Remember… As well as creating a practice or program, the principal must meet all professional standards, certification, and licensing. It’s up to you to find out if they do. Smiles.
 
Reference used:
 
Senel, H. (2009). Parents’ Views & Experiences About Complementary & Alternative Medicine Treatments for Their Children with Autistic Spectrum Disorder. Springer Science & Business Media; Novemer 2009.
 
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Additional Treatment Resources
The National Institute on Deafness and Other Communication Disorders has a website to help individuals with an ASD who have communication challenges.

The National Institute of Dental and Craniofacial Research has a website to help health professionals with the oral health care needs of patients with an ASD.

Clinical Trials.Gov lists federally funded clinical trials that are looking for participants. If you or someone you know would like to take part in an autism study, go to the website and search “autism.”

The Autism Treatment Network (ATN) seeks to create standards of medical treatment that will be made broadly available to physicians, researchers, parents, policy makers, and others who want to improve the care of individuals with autism. ATN is also developing a shared national medical database to record the results of treatments and studies at any of their five established regional treatment centers.

Complementary & Alternative Medicine (CAMs 1 - 12) with < My Thoughts > by Sara Luker will be presented in separate posts, as follows –
 
​POST (1-2) Acupuncture, Animal Assisted Therapy 
POST (3-4) Auditory Integration Therapy, Chelation Therapy  
POST (5-6) Creative Therapy (art & music & dance & theatre),
Facilitated Communication,
POST (7-9) Hyperbaric Therapy, Immunoglobulin Infusions, Massage Therapy,
POST (10-12) Physical Activity Program, Stem Cell Therapy, Vitamin Supplement Therapy

Complementary & Alternative Medicine (CAMs 1 - 12)​ with < My Thoughts > by Sara Luker
BEGINS HERE!  At any time... PLEASE USE BACK ARROW (<----) TO RETURN TO MAIN PAGE...

POST (1-2) Acupuncture, Animal Assisted Therapy ​

1.  Acupuncture
Retrieved from: https://www.pacificcollege.edu/news/blog/2014/09/17/autism
 
Autism Treatment through Traditional Chinese Medicine –
 
The acupuncturist must meet national and state standards through examination and certification process, according to the National Certification Commission for Acupuncture & Oriental Medicine (NCCAOM).
 
Tongue diagnosis is a central piece of the Chinese medical diagnostic system because the tongue is the only organ that can be seen externally. Its condition - color, thickness, dryness, smell and superficial growth reflects the condition of the heart and helps doctors determine treatment. Autism has been treated with acupuncture and massage. These two methods can be a difficult undertaking. It can take time for a child to adjust to touch treatments.
 
Wong (2009) tells us that Chinese Herbal Medicine has been used throughout the ages as a complement to acupuncture in order to balance the body’s opposite forces of Ying & Yang to interconnect them. Many parents, Wong says, have taken herbal medicines themselves and don’t believe them to be dangerous. However, studies show there are many contaminants in botanicals and without professional knowledge of the plants, severe complications, even death can occur. He states that while many Western doctors are well-trained in acupuncture and herbal medicine, this therapy is still considered ‘unconventional’.
 
< My Thoughts >   **Remember… As well as creating a practice or program, the principal must meet all qualifying professional standards, certification, and licensing. It’s up to you to find out if they do. Smiles.
 
References used:
 
Wong, V. (2009). Use of Complementary & Alternative Medicine (CAM) in Autism Spectrum Disorder (ASD): Comparison of Chinese & Western Culture; Journal of Autism Developmental Disorders; V43, p.2720 – 2725.
 
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 2. Animal Assisted Therapy

In studies where children with autism are shown pictures of humans and pictures of animals in order to see which group they reacted to most; overall the children respond more to the pictures of animals.

The animals used widely in therapy with the child were the following –
​

• dogs
• dolphins
• horses

< My Thoughts >    It’s hard to know whether or not the animal is the determining factor in the child’s behavioral change. Reviews showed increased social interaction and reported attempted communication, during the presence of an animal. But, this was not supported with any empirical study that I could find.
 
About Dog Assisted Therapy, Butterly, et al. (2013) interviewed “five providers who prepared dogs to work with a wide range of conditions and behaviors, mainly Asperger’s syndrome, autism and communication disorders. The majority felt that after placement of the service dog the recipient had improved attention span, communication skills, and increased familial cohesion.”

They established that “the parent was to be the primary handler of the dog, to maintain the training of the dog and to ensure the safety and wellbeing of both the dog and the child.” They also found in their inquiry that recipients “tended to overestimate the gains” expected from the dog placement. But they also said that there were unexpected gains in the reduced anxiety, increased empathy, and increased activities as a family.
 
Grandgeorge and her colleagues (2012), did a study that “evaluated the association between the presence or the arrival of pets in families with an individual with autism and the changes in his or her prosocial behaviors.” This was a rather large study of 260 individuals with autism who had the ability to engage in pro-social behavior. Two groups were assessed (through a parent questionnaire) about the presence or absence of pets in the household and whether or not new pro-social behavior occurred in the child with autism. 
 
In one group the children had been born into a household with a pet. In the other group, called the ‘pet arrival’ group, 5-year-old children were given a new pet. The results showed that the pet-child relationship was more qualitative (quality of pro-social behavior… ‘offering to share’ and ‘offering comfort’) than quantitative (number of times this behavior occurred). The conclusion was that more related studies were needed to better understand how the ‘pet-child’ relationship might improve pro-social behavior in the ASD child.
​
< My Thoughts >  Just so you know… The field of Animal Therapy is relatively new, therefore licensing and credentials may not be standard throughout the nation. Look under Animal Assisted Therapy, as an Animal Therapist works on animals, not humans. Smiles. It seems that there are several degrees available, those who are Human Service Specialists already, who want to incorporate the use of an animal as part of their therapy program. And, those who can help a family obtain a service animal for their child for support and comfort.

And, just a little background in this area – My husband and I trained assistance dogs for handicapped children, for several years. For our program candidates to receive the dog we interviewed the families several times and we made home visits to assess the appropriateness of the setting the dog would be living in.

We also had a strict ‘follow-up’ procedure where we made ‘surprise’ visits to the home to evaluate how the placement was succeeding. There have been cases where we found the dog chained-up in the backyard, or sharing space with other family dogs; instead of staying by the side of the child it was intended to serve and protect. At that point, contractually we had the right to remove the dog. Just saying. 
​
< My Thoughts >   **Remember… As well as creating a practice or program, the principal must meet all qualifying professional standards, certification, and licensing. It’s up to you to find out if they do. Smiles.
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Reminder: Complementary & Alternative Medicine (CAMs 1 - 12) will be presented in separate posts, as follows –
 
Complementary & Alternative Medicine (CAMs POSTS 1 - 12) 
POST (1-2) Acupuncture, Animal Assisted Therapy 
POST (3-4) Auditory Integration Therapy, Chelation Therapy  
POST (5-6) Creative Therapy (art & music & dance & theatre), Facilitated Communication,
POST (7-9) Hyperbaric Therapy, Immunoglobulin Infusions, Massage Therapy,
POST (10-12) Physical Activity Program, Stem Cell Therapy, Vitamin Supplement Therapy

POST (3-4) Auditory Integration Therapy, Chelation Therapy

​3. Auditory Integration Therapy
 
The most well-known auditory integration therapy seems to be the Berard Method of Auditory Integration Therapy (AIT). According to the Berard website, http://berardaitwebsite.com/, the Berard Method of AIT is to be differentiated from any other sound-based programs. They say that the key program elements here require that each practitioner follow the Berard AIT protocol. The key points of this protocol include – 10 days of listening sessions, directly through the Berard AIT designed headphones. This audio stimulation is provided 2 times a day for 30 minutes each session. It is acceptable, they say, to have a 1 or 2 day break but only after the first 5 days of listening. The minimum age for beginning this program is 3 years old, and there is no upper age limit.
 
Sokhadzel, et al. (2016) tell us that an auditory integration therapy developed by Dr. Guy Berard was studied and it was found that AIT provides important promise, but that a more standardized procedure and collection of ASD-specific data needed to be gathered. These authors did conclude that auditory discrimination of infrequent changes in streams of auditory stimuli appeared to influence sensory processing in children with ASD.
 
They also found that low functioning children were not able to cooperate with the ‘audiometry’ test procedures which help determine the kind of music, auditory level, sound frequency and other necessary data needed to proceed. Some children were given fidget toys to keep their hands away from the required headphones. While others were able to quietly watch nature videos with the sound off, allowing practitioners gathered that individual’s data.
 
< My Thoughts >   **Remember… As well as creating a practice or program, the principal must meet all qualifying professional standards, certification, and licensing. It’s up to you to find out if they do. Smiles.
 
Reference used:
 
Sokhadzel, E., Casanova, M., Tasman, A., Brackett, S. (2016). Electroysiological & Behavioral Outcomes of Berard Auditory Integration Training (AIT) in Children with ASD; Applied Psychophysiology & Biofeedback Journal; V41: p. 405-420.

​4. Chelation Therapy
 
In an article called Metals in Medicine & the Environment, by the faculty at Virginia University faculty.virginia.edu/metals/cases/rasnake2.html, they talk about chelation therapy in terms of its claims for usefulness in the treatment of atherosclerosis and of autism. They claim that children with autism are suspected to have put things with lead based paint in their mouth. Or, to have lead based paint in their environment. There are other man-made exposures to heavy metals in our homes in the form of treated lumber, paint, pesticides, herbicides, rodent poisons, contaminated seafood, old amalgam dental fillings and in prior mercury-based vaccines.
 
The proponents of chelaton therapy believe they can remove high levels of heavy metals through their treatments. The danger here, the investigators conclude, is that the high risk of the administering intravenous chelaton therapy (in at least one case death has occurred) can be worse that the effects of having heavy metals in one’s body.
 
Brown University, in their Child & Adolescent Behavior Letter, November 2008, advises that using chelaton therapy may put children at risk for an uncertain medical gain.” And, they caution that the National Institute of Mental Health (NIMH) has cancelled all plans of even studying this treatment, as it is too high-risk.
 
< My Thoughts >   **Remember… As well as creating a practice or program, the principal must meet all qualifying professional standards, certification, and licensing. It’s up to you to find out if they do. Smiles.
 
References used:
 
Metals in Medicine & the Environment, by the faculty at Virginia University faculty.virginia.edu/metals/cases/rasnake2.html
 
Editors: Chelaton Therapy; Brown University Child & Adolescent Behavior Letter, November 2008.

PLEASE USE BACK ARROW (<----) TO RETURN TO MAIN PAGE...
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UNDER... “What to Do While You Wait” … Reminder that these are the CAMs posting order… 
 
POST (1-2) Acupuncture, Animal Assisted Therapy
POST (3-4) Auditory Integration Therapy, Chelation Therapy 
POST (5-6) Creative Therapy (art & music & dance), Facilitated Communication
POST (7-9) Hyperbaric Therapy, Immunoglobulin Infusions, Massage Therapy
POST (10-12) Physical Activity Program, Stem Cell Therapy, Vitamin Supplement Therapy
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POST (5-6) Creative Therapy (art & music & dance), Facilitated Communication

5. Creative Therapy (a. Art, b. Dance, c. Music, & d. Theatre) & Adventure Therapy