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.
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.
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.
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.
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.
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.
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.
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.
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’.
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.
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.
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/
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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.
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