< My Thoughts >
Loving your children... keeping them safe...
& finding out how they learn is 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 begins 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.
Getting to know your child & getting help is the key. Knowledge can be power!
Loving your children... keeping them safe...
& finding out how they learn is 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 begins 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.
Getting to know your child & getting help is the key. Knowledge can be power!
Unit 7 – 1 Who May Help?
UNIT 7-1 OTHER THERAPIES, SECTION 1:
INTRODUCTION
- ABA
- CBT
- DIR/Floortime
- OT
- PECS.
UNIT 7, SECTION 1 – WHO MAY HELP? OTHER THERAPIES; ABA, CBT, DIR/Floortime, OT, PECS
The following THERAPIES (ABA, CBT, DIR/Floortime, OT, PECS) are described without intent, or suggestion of status or effectiveness.
INTRODUCTION to ‘OTHER’ THERAPIES; ABA, CBT, DIR/Floortime, OT, PECS
Therapies are often used in conjunction with other programs. Parents often engage in the first available program, depending on their level of need. They may also neglect to inform or consult the child’s primary physician that this is taking place. Consequently, there can be confusing ‘outcomes’ as the following anecdotal family stories reveal. Separating ‘programs’, one from another, becomes difficult, because they are often intricately intertwined.
While a ‘therapy’ could mean a ‘one-on-one’ session with a licensed therapist. This person would have been recommended to evaluate and prescribe sessions which are individualized specifically for that person with autism, and to address their symptoms. Or, there may be a trained technician doing the preliminary intake and providing basic work with the child, with the therapist assigned later.
Therapies may be tested, vetted, and proven to be helpful to improving the person’s condition. A ‘cure’ is not the expected outcome of therapeutic sessions, but an intervention and/or method to improve their quality of life.’
Note: Please refer to ‘disclaimer’.
< My Thoughts > “…trained technician…”
A ‘trained’ therapy technician may mean different things to different people. ‘Trained’ may mean ‘trained’ in their programs protocol. But, may or may NOT mean ‘qualified’ or ‘certified’ in their represented field where the ‘program’ is concerned. Never assume that because the person is employed by a program, that they are qualified to work with your child. Trust but verify.
Carlon, S., Carter, M., et al. (2015) claim that parents reported, in a clinical study of 62 parents, that they didn’t pick a therapy program for their child, on the recommendation of others. They felt there was enough ‘empirical’ information out there now, to make an informed decision. This study found that the most frequently used programs, some of which were used simultaneously, were Applied Behavior Analysis (ABA), Cognitive Behavioral Therapy (CBT), Relationship Development Intervention (RDI) & Complementary & Alternative Medical treatments (CAM); along with some support for Sensory Integration Therapy (SIT) (sometimes called Sensory Processing).
Carlon, et al. (2015) say that parents reported, in a clinical study of 62 parents, that they didn’t pick a therapy program for their child, on the recommendation of others. They felt there was enough ‘empirical’ information out there now, to make an informed decision. This study found that the most frequently used programs, some of which were used simultaneously, were Applied Behavior Analysis (ABA), Cognitive Behavioral Therapy (CBT), Relationship Development Intervention (RDI) & Complementary & Alternative Medical treatments (CAM); along with some support for Sensory Integration Therapy (SIT) (sometimes called Sensory Processing).
< My Thoughts > “…most frequently used programs…”
Understand that many of these programs, both ‘traditional’ and ‘non-traditional’, have therapists holding long sessions in your home, while you need to be present. If you have siblings or other children present too, this can be problematic.
Sometimes these ‘program’ sessions can also be held at school, when trained staff is available. The problem there can be that of ‘continuity’ and ‘fidelity’ to your child’s individual program. The staff may NOT be dedicated to the specifics of your child’s program alone, and/or may work with your child in a group setting. Also, when it is the only source of intervention, there could be a lack of important program continuance, due to school holidays and extended breaks.
One of the reasons for the popularity of these aforementioned programs is that they have successfully marketed to insurance companies and can almost always be assured of referral and coverage approval by the parent’s insurance.
Shepherd, D., Csako, R., et al. (2018) share that often following an autism diagnosis, a New Zealand clinical study showed that parents progressed through stages of mourning, adaptation, and adjustment. Instead, they say, it would be better if they could be focusing on finding the interventions that their child will need. A therapy aligned with the child’s developmental age, symptom constellation, and symptom severity.
Parents may hesitate because they feel vulnerable and overwhelmed by the challenging selection of interventions to choose from. Selection is often easier if the child has more severe deficits in one of autism’s ‘core’ areas; such as communication, behavior, gastrointestinal, or toileting issues. If that is the case, then the choice is narrowed down to finding the therapists or programs which specialize in those areas. Then, the most commonly utilized interventions could include –
- Behavior Intervention (BI)
- Occupational Therapy (OT) Often help with eating, feeding & swallowing problems.
- Speech & Language Therapy (SLT) Often help with eating, feeding & swallowing problems.
- Dietary Intervention (DI)
< My Thoughts > “…challenging selection of interventions…”
There are pressures on most parents, in many countries, to start an ‘early intervention’, as soon as possible. Dealing daily with the struggle of their child’s severe symptoms, hardly leaves time to search for an appropriate intervention.
Then, at the end of their search, parents may often just be ready to hand their child over to a program, and not look back. But that could be a costly mistake, in many ways. Parents need to be involved. They need to make certain their child is safe, and that the program is truly beneficial, and not damaging. There will be an adjustment period, of course, however parent involvement is critical. More reason to ask for a ‘trial period’, before you make a commitment that you can’t easily get out of.
Shepherd, et al. state other factors effecting parents’ choice of interventions. For instance, those factors of financial hardships may have parents choosing their first programs by those to be those funded by government agencies. Or, they reportedly will select their child’s first interventions simply by ‘gut feeling’, or ‘intuition’.
Parents then discontinue some interventions; terminating them because the program doesn’t seem to be targeting their child’s symptoms, satisfactorily. Some parents feel disappointed when the therapy does not ‘generalize’ to help intervene to relieve ‘symptoms’, in ‘all’ settings. Another program problem may be that the mother or father wanted to play a larger role in the therapy process. Or, the opposite happens; parents didn’t want to have a pivotal or central role in the responsibility for success of the program.
Deb, et al. (2020) recommend that when examining intervention programs, look for these specifics –
- Fidelity to program protocols & procedures
- Accurate report of program outcome data
- Parent education/training for involvement in child’s intervention
- Program’s expected effect on child’s targeted ‘core’ symptom cluster
- Additional therapeutic positive/negative effect on behavior, sleeping, and eating regimes
- Positive effect on parental stress, knowledge, & confidence in the program
- Highly experienced & credentialed therapists to assure program integrity
Note: DISCLAIMER – Autism ‘intervention’, as with the phrase ‘Early Detection / Early Intervention’, may simply mean to attempt an ‘action’, or attempt to ‘change a course’ or ‘trajectory’ of the person’s autism. Any expectation for a successful ‘change’ must have the cooperation of the participant, the parent, and/or the assigned therapist. Words such as, ‘intervention’, ‘instruction’, ‘treatment’, ‘therapy’, ‘service’, or ‘program’ imply ‘cure’, or ‘long-term’ positive effect. That is NOT my intention here, and all information is presented without intent or suggestion of status or effectiveness.
The following therapies are described in alphabetical order, without intent or suggestion of status or effectiveness –
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 1. ABA
1. Applied Behavior Analysis (ABA) is a well-known treatment approach for people with Autism Spectrum Disorder (ASD). ABA has become widely accepted among health care professionals and is used in many schools and treatment clinics. ABA encourages positive behaviors, and discourages negative behaviors, in order to improve a variety of skills. The child’s progress is faithfully tracked and measured.
Typically, this therapy requires a long-term commitment. For a child under three years old, you can expect to spend from 26 – 30 hours a week, in the home setting. Over three years old, you will spend from 30 – 40 hours per week. ABA program age range is from 2 – 12 years old. Many insurance companies seem to be more familiar with this very intense type of behavioral therapy. Therefore, parents more often find the funding they need when ABA is part of the overall plan for their child’s intervention.
< My Thoughts > “…from 30 – 40 hours per week.”
A word of caution: Consider how having someone in your home 30 – 40 hours a week will affect you and the rest of the family. Parents are expected to be present during these sessions.
Kedar (2012) family kept juggling who would be home, who would work, who would drive the child to speech, occupational, and other therapies. And finally, as parents we wondered whether we could afford hired support.
For the first three years of our son Ido’s home-based program, my husband was the one who put his career on hold to stay home. All day long, little Ido was taken to the table in his room by instructors, who came and went throughout the day, and asked him to point to flashcards, or stand up and touch his head, or his nose.
Ido was incessantly corrected, yet the behaviors persisted.
He developed a fascination with letters, staring intently at the alphabet poster he had in his bedroom. He continually was found staring at signs and license plates, dancing and flapping with delight at seeing the credits at the end of a video or TV program.
“He is fixating on letters he sees,” our ABA behavior modification supervisor told us. “Take away his alphabet poster. Don’t let him stare at letters.”
So, we did, not realizing that our brilliant little guy, knowing that he couldn’t speak, was teaching himself to read.
This became Ido’s life. Pre-school in the morning. Forty hours of ABA a week, in our home. Speech therapy, and occupational therapy, and music therapy, and other interventions we gambled on, and hoped would work.
Whiffen (2009) shares – Part of me withered away today, as the formality of the diagnosis crushed my dreams for Clay, and what he could become – the barometer from which all parents measure their own successes and failures. How did this happen? I search myself. I feel venerable. Now it’s real. There’s no more hiding behind autism ignorance or denial.
I asked Dr. Coates, “What are your recommendations for treatment?”
“Well as you are probably aware, there is no ‘cure’ for autism. It is a lifelong condition. However, many who have used ABA methods, or Applied Behavior Analysis, seem to improve somewhat. And, there is some solid research behind it.”
“We’re already working on setting up an in-home ABA program,” I say.
“Great. It sounds like you’re on the right track.”
Later that afternoon, Karen phones me to let me know that Kids on The Move is offering a presentation of DIR/Floortime, an autism intervention. Although I’m moving forward with our ABA program, I want to learn about other interventions.
The presenter introduces herself as Heather. She talks about joining in play with your child, letting the child be the guide. I take copious notes. After the presentation, I anxiously approach her.
I ask her how she became involved with autism. “I have a son with autism,” she says. “How’s your son doing?” I squeeze out, too quickly. “What therapies have helped him the most,” I ask. “Oh, we’ve tried so many. Currently we’re running an ABA program, and I do Floortime with him. We see Dr. Bryan Jepson for biomedical treatment as well.”
A few days later, a friend calls with this information I had asked for about ‘biomedical treatments and Bryan Jepson.
Do you have his phone number?” “I want to know what is at the root of Clay’s autism.” Once home, I head for the computer and immerse myself in research once again. Maybe Dr. Jepson can help Clay.
Johnson (2014) talks about her experiences with finding interventions and insurance coverage for her daughter Sophie.
One of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the disconnect. As diagnosticians, the implication was that the parent should be pleased to get ‘any’ determination which provided services for the child.
Autism assessments can be done by private individuals, but your insurance company may NOT pay for it. Also, if the individual you choose is not recognized by the school district, then it may be done in vain because it doesn’t fit into the existing services.
Another problem is that there is very little, if any, regulation when it comes to program testing and qualifying. Do your homework.
Most states, in the United States, require that health insurance plans provide coverage for ‘evidence-based’ diagnosis and treatment, but they vary widely as to how.
The Centers for Disease Control & Prevention (CDC) says that fees for ASD-related health care services, therapies, and caregiving cost the average family $17,000 a year more than a child without autism. And, that number increases to over $21,000 per year for those who are severely affected. The following is found about ABA on this online website; www.ncsl.org/.../health/autism-and-insurance-coverage-state-laws –
< My Thoughts > “…provide coverage for ‘evidence-based’ diagnosis and treatment…”
States only provide coverage for “generally recognized services,” so you have to find out which ones qualify. Many states recognize Applied Behavior Analysis (ABA) as a recommended therapy, but ABA may NOT be a good ‘fit’ for your child, or your family.
Check your individual state for the insurance coverage and state laws covering autism. Find the Insurance Commissioner for your state. There are differences from state to state.
Also, some states clarify and/or specify the type of care, treatment, services you can/cannot have help with. Go to your state’s website, or that of a nearby state. Some parents have even been known to move to a nearby state with friendlier laws and more programs for families with autism.
Note: More about INSURANCE in UNIT 6.
Hinds (2014) had new hope with the NIDS approach added to ABA. Dr. Goldberg was a Neuro-Immune Dysfunction Syndrome (NIDS) treatment supporter. He had strong views on diet, and his NIDS-treated diet restrictions have become even stronger over the years. He is adamant that his dietary requirements are not extreme and that extreme diets don’t ‘cure’ autism.
Eventually, my NIDS-treated kid started to wake up and develop again. Still, Applied Behavior Analysis (ABA) compliance training; plus, consistent parental guidance were needed to teach consequences for inappropriate behavior. Discipline for Ryan at age five was similar to discipline for a typical two-year old. You have to meet your child’s behavior consequences, at the age they are developmentally.
His strange autistic behaviors were ingrained. He had done them all day long for years. I was told these behaviors helped him cope with our unpredictable and confusing world. Still, the way he acted didn’t make sense to us or anyone else. ABA was a game changer. In the beginning Ryan absolutely, totally, and completely did not want to change. He barricaded himself behind a wall of aggressive, combative, and horrible behavior. Behavior often worsened before it became extinguished. Ryan really was getting better. It just didn’t look like he was.
I was, and still am, convinced that the NIDS protocol needs to be supported by ABA. There were so many times I wanted to quit. This was just taking too long. Even with these stunning improvements, Ryan was still unfocused, disorganized, and to put it bluntly, ‘weird’. NIDS plus ABA revolutionized Ryan’s world. Like any child, Ryan learned best when he was healthy. He was getting there.
Although my son is leading a full and productive life, he is not cured. Ryan is still dependent on medications to help his immune system work optimally. For the type of autism Ryan has, our version of the NIDS protocol, and our modified ABA program worked. Please remember that this medical treatment only worked well because it was paired with extensive behavioral and educational therapy. My goal is that someday Ryan will be medication free.
< My Thoughts > “…someday Ryan will be…”
Marcia Hinds’ son Ryan has become an aerospace engineer. She believes that is because he received proper medical treatment combined with behavioral and educational interventions. Through her writing, websites, and personalized help, Ryan’s mom has helped many families come to terms with autism. You may find Marcia Hinds through social media.
Rudy (2020) believes that Behavioral Therapy, like Applied Behavioral Analysis (ABA), and similar therapies, have become the ‘gold standard’ ASD treatment with many school districts. ABA teaches critical skills in several settings – at home, at school, and at work.
< My Thoughts > “…have become the ‘gold standard’ ASD treatment…”
Applied Behavioral Analysis (ABA), and similar therapies have become the ‘gold standard’ for many reasons. My experience has been that children who have spent months, and even years, being taught ABA expect to see it continued, in the school setting.
Parents who have been pleased with the results they have seen and paid dearly for it, want that home program to remain in place, during their child’s school hours. Therefore, ABA has been one of the first programs included in the Special Education classroom; and, it has been accepted and endorsed by most leading insurance companies. But for many families, it is just too extreme.
Whiffen (2009) says it’s September, two months since we started the ABA program with our son, Clay. A routine has been established. Sometimes it’s bothersome having people in our home constantly, but I’ve become an expert at acting happy, being talkative and friendly around the instructors each day. But, as soon as the front door closes after the last session, I breathe a heavy sigh of relief. I can finally be me. Clay is excited to see me during the break, then cries and tantrums when it’s time to go back to work. I reassure myself – someday he’ll be old enough to know that this is an act of love.
REFERENCES: UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1; INTRODUCTION, 1. ABA.
Carlon, S., Carter, M., et al. (2015). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disabilities; V27:285-305.
Deb, S., Retzer, A., et al. (2020). The Effectiveness of Parent Training for Children with Autism Spectrum Disorder: A Systematic Review & Meta-analysis; BioMedCentral (BMC) Psychiatry, London, UK.
Hinds, M. (2014). I Know You’re in There: Winning Our War Against Autism; eBook Edition.
Johnson, I.D. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online; Retrieved online from – https://www.verywellhealth.com/the-best-treatment-for-autism-4585131/
Shepherd, D., Csako, R., et al. (2018). Documenting & Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V48; p988-1001.
Whiffin, L. (2009). Child’s Journey Out of Autism: One Family’s Story of Living in Home and Finding a Cure; eBook Edition.
APPENDIX - Therapies under the ABA umbrella.
There are different types of therapies under the ABA umbrella.
Here are some examples (also shown in alphabetical order) –
Typically, this therapy requires a long-term commitment. For a child under three years old, you can expect to spend from 26 – 30 hours a week, in the home setting. Over three years old, you will spend from 30 – 40 hours per week. ABA program age range is from 2 – 12 years old. Many insurance companies seem to be more familiar with this very intense type of behavioral therapy. Therefore, parents more often find the funding they need when ABA is part of the overall plan for their child’s intervention.
< My Thoughts > “…from 30 – 40 hours per week.”
A word of caution: Consider how having someone in your home 30 – 40 hours a week will affect you and the rest of the family. Parents are expected to be present during these sessions.
Kedar (2012) family kept juggling who would be home, who would work, who would drive the child to speech, occupational, and other therapies. And finally, as parents we wondered whether we could afford hired support.
For the first three years of our son Ido’s home-based program, my husband was the one who put his career on hold to stay home. All day long, little Ido was taken to the table in his room by instructors, who came and went throughout the day, and asked him to point to flashcards, or stand up and touch his head, or his nose.
Ido was incessantly corrected, yet the behaviors persisted.
He developed a fascination with letters, staring intently at the alphabet poster he had in his bedroom. He continually was found staring at signs and license plates, dancing and flapping with delight at seeing the credits at the end of a video or TV program.
“He is fixating on letters he sees,” our ABA behavior modification supervisor told us. “Take away his alphabet poster. Don’t let him stare at letters.”
So, we did, not realizing that our brilliant little guy, knowing that he couldn’t speak, was teaching himself to read.
This became Ido’s life. Pre-school in the morning. Forty hours of ABA a week, in our home. Speech therapy, and occupational therapy, and music therapy, and other interventions we gambled on, and hoped would work.
Whiffen (2009) shares – Part of me withered away today, as the formality of the diagnosis crushed my dreams for Clay, and what he could become – the barometer from which all parents measure their own successes and failures. How did this happen? I search myself. I feel venerable. Now it’s real. There’s no more hiding behind autism ignorance or denial.
I asked Dr. Coates, “What are your recommendations for treatment?”
“Well as you are probably aware, there is no ‘cure’ for autism. It is a lifelong condition. However, many who have used ABA methods, or Applied Behavior Analysis, seem to improve somewhat. And, there is some solid research behind it.”
“We’re already working on setting up an in-home ABA program,” I say.
“Great. It sounds like you’re on the right track.”
Later that afternoon, Karen phones me to let me know that Kids on The Move is offering a presentation of DIR/Floortime, an autism intervention. Although I’m moving forward with our ABA program, I want to learn about other interventions.
The presenter introduces herself as Heather. She talks about joining in play with your child, letting the child be the guide. I take copious notes. After the presentation, I anxiously approach her.
I ask her how she became involved with autism. “I have a son with autism,” she says. “How’s your son doing?” I squeeze out, too quickly. “What therapies have helped him the most,” I ask. “Oh, we’ve tried so many. Currently we’re running an ABA program, and I do Floortime with him. We see Dr. Bryan Jepson for biomedical treatment as well.”
A few days later, a friend calls with this information I had asked for about ‘biomedical treatments and Bryan Jepson.
Do you have his phone number?” “I want to know what is at the root of Clay’s autism.” Once home, I head for the computer and immerse myself in research once again. Maybe Dr. Jepson can help Clay.
Johnson (2014) talks about her experiences with finding interventions and insurance coverage for her daughter Sophie.
One of the problems with the process of diagnosis, treatment, and intervention, as I see it, is the disconnect. As diagnosticians, the implication was that the parent should be pleased to get ‘any’ determination which provided services for the child.
Autism assessments can be done by private individuals, but your insurance company may NOT pay for it. Also, if the individual you choose is not recognized by the school district, then it may be done in vain because it doesn’t fit into the existing services.
Another problem is that there is very little, if any, regulation when it comes to program testing and qualifying. Do your homework.
Most states, in the United States, require that health insurance plans provide coverage for ‘evidence-based’ diagnosis and treatment, but they vary widely as to how.
The Centers for Disease Control & Prevention (CDC) says that fees for ASD-related health care services, therapies, and caregiving cost the average family $17,000 a year more than a child without autism. And, that number increases to over $21,000 per year for those who are severely affected. The following is found about ABA on this online website; www.ncsl.org/.../health/autism-and-insurance-coverage-state-laws –
- State requires pre-authorization, prior approval, care-management oversight, and limits number of visits.
- State may or may not approve coverage for screening, diagnostic testing & treatment of ASD, but requires approval for ABA.
- State requires health insurance providers to cover well-baby & well-child visits. Requires any child under 19 years of age to be eligible for coverage; and/or anyone who is 22 years of age or younger, to be covered if not enrolled in school. Also limits ABA coverage to $45,000 per year.
- State provides for speech, occupational & physical therapy as prescribed in an approved treatment plan. State requires therapies to provide licensing procedures for all providers, including ABA.
- State limits annual treatment benefits to $50,000 for children, up to 6 years old; $40,000 from age seven to age twelve years. State suggests looking into the federal Patient Protection & Affordable Care Act, through a health benefit exchange.
- State defines habilitative services, such as speech, occupational & physical therapy to provide treatment which will enhance the person’s ability to function.
< My Thoughts > “…provide coverage for ‘evidence-based’ diagnosis and treatment…”
States only provide coverage for “generally recognized services,” so you have to find out which ones qualify. Many states recognize Applied Behavior Analysis (ABA) as a recommended therapy, but ABA may NOT be a good ‘fit’ for your child, or your family.
Check your individual state for the insurance coverage and state laws covering autism. Find the Insurance Commissioner for your state. There are differences from state to state.
Also, some states clarify and/or specify the type of care, treatment, services you can/cannot have help with. Go to your state’s website, or that of a nearby state. Some parents have even been known to move to a nearby state with friendlier laws and more programs for families with autism.
Note: More about INSURANCE in UNIT 6.
Hinds (2014) had new hope with the NIDS approach added to ABA. Dr. Goldberg was a Neuro-Immune Dysfunction Syndrome (NIDS) treatment supporter. He had strong views on diet, and his NIDS-treated diet restrictions have become even stronger over the years. He is adamant that his dietary requirements are not extreme and that extreme diets don’t ‘cure’ autism.
Eventually, my NIDS-treated kid started to wake up and develop again. Still, Applied Behavior Analysis (ABA) compliance training; plus, consistent parental guidance were needed to teach consequences for inappropriate behavior. Discipline for Ryan at age five was similar to discipline for a typical two-year old. You have to meet your child’s behavior consequences, at the age they are developmentally.
His strange autistic behaviors were ingrained. He had done them all day long for years. I was told these behaviors helped him cope with our unpredictable and confusing world. Still, the way he acted didn’t make sense to us or anyone else. ABA was a game changer. In the beginning Ryan absolutely, totally, and completely did not want to change. He barricaded himself behind a wall of aggressive, combative, and horrible behavior. Behavior often worsened before it became extinguished. Ryan really was getting better. It just didn’t look like he was.
I was, and still am, convinced that the NIDS protocol needs to be supported by ABA. There were so many times I wanted to quit. This was just taking too long. Even with these stunning improvements, Ryan was still unfocused, disorganized, and to put it bluntly, ‘weird’. NIDS plus ABA revolutionized Ryan’s world. Like any child, Ryan learned best when he was healthy. He was getting there.
Although my son is leading a full and productive life, he is not cured. Ryan is still dependent on medications to help his immune system work optimally. For the type of autism Ryan has, our version of the NIDS protocol, and our modified ABA program worked. Please remember that this medical treatment only worked well because it was paired with extensive behavioral and educational therapy. My goal is that someday Ryan will be medication free.
< My Thoughts > “…someday Ryan will be…”
Marcia Hinds’ son Ryan has become an aerospace engineer. She believes that is because he received proper medical treatment combined with behavioral and educational interventions. Through her writing, websites, and personalized help, Ryan’s mom has helped many families come to terms with autism. You may find Marcia Hinds through social media.
Rudy (2020) believes that Behavioral Therapy, like Applied Behavioral Analysis (ABA), and similar therapies, have become the ‘gold standard’ ASD treatment with many school districts. ABA teaches critical skills in several settings – at home, at school, and at work.
< My Thoughts > “…have become the ‘gold standard’ ASD treatment…”
Applied Behavioral Analysis (ABA), and similar therapies have become the ‘gold standard’ for many reasons. My experience has been that children who have spent months, and even years, being taught ABA expect to see it continued, in the school setting.
Parents who have been pleased with the results they have seen and paid dearly for it, want that home program to remain in place, during their child’s school hours. Therefore, ABA has been one of the first programs included in the Special Education classroom; and, it has been accepted and endorsed by most leading insurance companies. But for many families, it is just too extreme.
Whiffen (2009) says it’s September, two months since we started the ABA program with our son, Clay. A routine has been established. Sometimes it’s bothersome having people in our home constantly, but I’ve become an expert at acting happy, being talkative and friendly around the instructors each day. But, as soon as the front door closes after the last session, I breathe a heavy sigh of relief. I can finally be me. Clay is excited to see me during the break, then cries and tantrums when it’s time to go back to work. I reassure myself – someday he’ll be old enough to know that this is an act of love.
REFERENCES: UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1; INTRODUCTION, 1. ABA.
Carlon, S., Carter, M., et al. (2015). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disabilities; V27:285-305.
Deb, S., Retzer, A., et al. (2020). The Effectiveness of Parent Training for Children with Autism Spectrum Disorder: A Systematic Review & Meta-analysis; BioMedCentral (BMC) Psychiatry, London, UK.
Hinds, M. (2014). I Know You’re in There: Winning Our War Against Autism; eBook Edition.
Johnson, I.D. (2014). The Journey to Normal: Our Family’s Life with Autism; eBook Edition.
Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism; eBook Edition.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online; Retrieved online from – https://www.verywellhealth.com/the-best-treatment-for-autism-4585131/
Shepherd, D., Csako, R., et al. (2018). Documenting & Understanding Parent’s Intervention Choices for Their Child with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V48; p988-1001.
Whiffin, L. (2009). Child’s Journey Out of Autism: One Family’s Story of Living in Home and Finding a Cure; eBook Edition.
APPENDIX - Therapies under the ABA umbrella.
There are different types of therapies under the ABA umbrella.
Here are some examples (also shown in alphabetical order) –
- Discrete Trial Training (DTT) or Discrete Trial Intervention (DTI) (Under the ABA umbrella)
DTT is a style of teaching that uses a series of trials to teach each step of a desired behavior, or response. Lessons are broken down into their simplest parts and positive reinforcement is used to reward correct answers and behaviors. Incorrect answers are ignored. This method targets eliciting first words, in children with ASD who have little or no spoken language. For ages from 2 – 6 years old; 20 – 30 hours per week. - Early Intensive Behavioral Intervention (EIBI) (Under the ABA umbrella). This is a type of ABA for very young children with an ASD. Children usually younger than 5 years old, and often younger than 3 years old. This is a one-on-one treatment based on EIBI theories and begins in the home setting; eventually, generalizing to the community, as the child learns the desired replacement behaviors. Usually, eligibility requires a recommendation from a psychologist or psychiatrist, plus a sustained partnership between the therapy team and the family.
- Pivotal Response Training (PRT) (Under the ABA umbrella). PRT aims to increase a child’s motivation to learn, monitor his/her own behavior, and initiate communication with others. It is designed to help the child reduce maladaptive behaviors that may interfere with functioning and replace them with a high level of adaptive skills. The child’s desire to obtain a reward is the key to this training. Rewards can be food, praise, playing a game; or, having another preferred activity. Positive changes in these behaviors should have widespread effects on other behaviors. Often, this part of the ABA process, for Ages 2 – 6 years old, is considered to satisfy the criteria for ‘evidence-based’ practice.
- Verbal Behavior Intervention (VBI) (Under the ABA umbrella). VBI is a type of ABA that focuses on teaching verbal skills. One-on-one sessions, 2 to 4-hour sessions, continuing until the child is able to perform the fundamental speech functions. The child learns how to verbalize through – asking for needs and wants (Manding); labeling things (Tacting); reaching for and pointing to things (Motor imitation); asking and requesting things in a back-and-forth intentional conversation (Intraverbals); and following instructions to perform a task (Receptive tasks). VBI is often used in conjunction with, or before the Early Intensive Behavioral Intervention (EIBI) portion, of the ABA program is taught. (Under the ABA umbrella). The benefit would be that the child learns that s/he can request and receive things without a tantrum or dragging a person to show them what object or activity they want or need. This reduces nonfunctional aggressive behaviors which can result in self-injury.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 2. CBT
2. Cognitive-Behavioral Therapy (CBT)
This Cognitive-Behavioral Therapy (CBT) program is being added, because the focus of this therapy is ‘Daily Living Skills’. Studies have shown that parents worry about their child’s total lack of motivation in this area.
CBT was originally used in the Mental Health Community, in addition to medication; for anxiety, phobias, specific fears, obsessive worrying, and compulsive behaviors. Now, this therapy is used for children with autism spectrum disorder, to help them address social issues, as well as learning daily living skills.
According to Wood, et al. (2011), there is a strong link between a child’s ‘high anxiety’ and their ‘low motivation’, when learning necessary daily living skills.
In this study, developmentally appropriate practical skills necessary for daily personal care, ranged from –
This study intended to find ways to help children from ages 7 years to 11 years, become more self-sufficient. The intent was also to help parents and children maintain gains, over the course of years, not just months. As a result of this therapy, the children in the study were found to be more successful, because they were no longer focused on their anxieties, or other related interferences instead of learning.
A study by Rotheram-Fuller & MacMuller (2011), said that CBT was originally used for patients with extreme anxieties to include –
The CBT therapy also has a pharmacological component. In addition to therapy, the patient receives antipsychotics, and/or antidepressants, to deal with underlying issues related to social problems. In this study, parents were also trained to work with their child, using relaxation and problem-solving strategies. Together, parent and child learned ways to combat their symptoms, by changing to more ‘positive’ feelings and thoughts about certain events and interactions.
Wood, et al. (2014) explored a study which compared cognitive behavioral therapy (CBT) with treatment-as-usual on a small group of 7-11-year-olds. They did a baseline before treatment; observing social communication and emotional regulation, among students. CBT therapy was designed to help the psychiatric disorders of pediatric Obsessive Compulsive Disorder (OCD), anxiety, and disruptive behavior disorder.
They say that many programs, that proceeded without the addition of anti-psychotic medication, were found to have a poor treatment response. in terms of generalization, and/or maintenance of desired skills. Consequently, that wasn’t an outcome they were looking for.
< My Thoughts > “…generalization and/or maintenance of desired skills.”
Hopefully, necessary generalization and maintenance of most learned skills can be achieved by all therapy programs. This means that the child, after participating in an intense and extensive program, would automatically use many or most of the skills, when outside of the ‘setting’ in which they were learned. Although, realistically some follow-up would be required from time to time to confirm generalization; and also, to keep improvements in place.
Krebs (2016) studied young people with ASD and co-occurring Obsessive-Compulsive Disorder (OCD), but found that they did not respond as well to CBT therapy as their typically developing counterparts. Noted too, was that they had difficulties in generalizing the behavior principles from one situation to another. Also, the gains that were made, didn’t seem to be maintained long term, but there was not much follow-up, to show one way or the other. This study also discussed an ‘enhanced’ protocol.
< My Thoughts > “…enhanced’ protocol.”
Apparently, there are modified CBT programs for those persons showing ‘more’ severe or resistant problems. Also, these programs seem to be more successful when they are ‘age appropriate’, and working within, or building on skills the person already has. In addition, all of this needs to work within an established, or ongoing therapy, which the person is receiving. One may be wise to ask for a ‘trial period’, before signing any commitments.
Maughan & Weiss (2017) examined parents being involved in their child’s treatment, to determine if they also benefited from their participation. The literature maintains that both parents and children improve with these emerging mindfulness and acceptance-based therapies. This is given that the challenging child behavior is also associated with, or the cause of the parental stress. CBT therapy works to improve parent-child interaction, especially when the parents make positive comments about the child. Post-treatment, parents need to continue to be less stressed and more positive towards their child, for best results to continue.
< My Thoughts > “…parents make positive comments…”
This program relies a great deal on parents making positive comments, and showing an encouraging attitude towards using the protocol. In addition, the parental expectation towards a positive outcome, and/or the final results, will depend upon the ongoing positive participation provided by both parent and child. This, unlike other mentioned programs, also trains the parent how to successfully relate to their child.
Kose, et al. (2018) believe studies show that parental involvement, personalized treatment metaphors, self-monitoring, and positive reinforcement is necessary. CBT therapy makes use of visuals, clear language for instructions; modification with visual aids, cues, and considerable parent involvement.
< My Thoughts > “…considerable parent involvement.”
One cannot simply hand their child over to a therapist and come back expecting that the child has been ‘changed’ or ‘fixed’. There are no Best Practices studies on using ‘Visuals;’ such as visual schedules, and/or checklists, etc. But, from both classroom, and ‘Sonny’ experience, using these can be very effective. For older individuals, engaging them in making these visual enhancements themselves, with guidance, can be a bonus benefit.
All of these provide successful opportunities to have an effective program. The first line of treatment for the most known autism comorbid disorder, Obsessive Compulsive Behaviors (OCB), is usually CBT therapy. OCB is characterized by repeated intrusive thoughts and distressing compulsive acts. This study also discusses the treatment needs of individuals, especially for adults and aging ASD populations; with other varying clinical presentations.
Sicile-Kira, 2004) suggests that 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.
For behavior intervention to be successful in older children, the treatment must be a collaborative effort between the family, home, teachers, therapists, and school personnel. Also, parents may have difficulty buying into any sort of behavior management.
Also, just meeting a new person, therapist, teacher, etc., may exaggerate a child’s natural temperament; good or not so good. If your child doesn’t warm up to strangers, try allowing a meeting in a more comfortable setting. For instance, in a place they like 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 they like to go.”
A place our Sonny likes to go is Mc Donald’s. Meeting someone new, like interviewing a caregiver or even a therapist can be complicated. Meetings are more successfully attempted for us at Mickey D’s. The interviewing process goes more smoothly while munching on fries and washing it down with a favorite soda or shake. 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, due to his first connection with that person in his preferred place.
REFERENCES: UNIT 7-1, WHO MAY HELP?
OTHER THERAPIES, Section 1 (Continued); 2. CBT
Kose, L., Fox, L., et al. (2018). Effectiveness of Cognitive Behavioral Therapy for Individuals with Autism Spectrum Disorders and Comorbid Obsessive-Compulsive Disorders: A Review of the Research; Journal of Physical Disability; V30, p69-87.
Krebs, G., Murry, K., et al. (2016). Modified Cognitive Behavior Therapy for Severe, Treatment-Resistant Obsessive-Compulsive Disorder in an Adolescent with Autism Spectrum Disorder; Journal of Clinical Psychology; V72:11, p1162-1173.
Maughan, A. & Weiss, J. (2017). Parental Outcomes Following Participation in Cognitive Behavior Therapy for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V47, p3166-3179.
Rotheram-Fuller, E. & MacMuller, L. (2011). Cognitive-Behavioral Therapy for Children with Autism Spectrum Disorder; Psychology in the Schools; V48:3.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; Penguin Random House Company; New York, N. Y.
Wood, J., Fuji, C., et al. (2014). Impact of Cognitive Behavioral Therapy on Observed Autism Symptom Severity During School Recess: A Preliminary Randomized, Controlled Trial; Journal of Autism Developmental Disorders; V44, p2264-2276.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 3. DIR
3. Developmental, Individual Differences, Relationship-Based Approach (DIR/Floortime; also called “Floortime” or Floortime Play)
We call the model the “DIR/Floortime Model” – because the “D” part means we focus directly working on what the child needs’ like working on engagement or two-way communication. The “I” is focusing in on the child’s individual ways of dealing with sensory sensations, like being ‘over’ or ‘under’ reactive. The “R” is learning relationships that are tailored to the child’s nervous system; meeting them where they are, developmentally. All of this, makes DIR a special kind of play.
According to Dr. Stanley Greenspan, the originator of Floortime, it is based on finding the child’s natural interest. What do they like to do? This means keeping the child in a ‘receptive’ mode. When s/he is ‘stimming’, then use that as an opportunity to identify the motivation, and to deepen their engagement. Use building on their natural interest as a motivation, by doing what they enjoy. Retrieved online from – https://www.icdl.com/dir
DIR/Floortime Play Therapy focuses on emotional and relational development (feelings towards, and relationships with parents and caregivers). It also focuses on how the child deals with sights, sounds, and smells. This therapy usually takes place in six to ten 20 – 30 minutes sessions, daily; depending on the extent of the challenge involved.
< My Thoughts > “…building on their natural interest…”
Hopefully the theme throughout this book has been, as the title says – Know your child, and know autism. Sonny, so often, shows us that he is smart, curious, and a guy that you just love being around – when he’s not swallowed up by his autism. Getting past your child’s ’debilitating‘ autism influences, while taking advantage of his or her ability to focus intensely, can be the big autism advantage.
Approach your child’s ‘therapy’ with the highest of expectations. Meet them at their ‘perseverance’ level; while finding ways to stay flexible to your child’. As Greenspan believed, it’s important to get and keep your child in a ‘receptive’ mode. Be careful about getting them into some kind of ‘competitive’ mindset. A ‘you’ against ‘them’ session, may not be very productive. We have a saying, “Let Sonny make the idea.” By leading him into an activity with all the ‘salesmanship’ we can muster, he usually will at least try once. If not, he will try later, when he ‘makes the idea’.
The main purpose of DIR/Floortime therapy, is to help the child with social relationships, mutual interactions, and behavior; in a natural setting. It takes into account personality disorders, plus behavioral problems such as –
DIR/Floortime Play is a children’s game which lasts 20 – 30 minutes, but is not just for children. Parents, treatment team members, and even other family members work together on this integrated model. Because Floortime Play therapy empowers the whole family, it is said to lead to a more visible improvement for the whole family.
< My Thoughts > “…DIR/Floortime Play…”
It seems to be ‘understood’ that this therapy is called ‘DIR/Floortime’, because most sessions take place on the ‘floor’. Seat behavior, among children with autism is a ‘learned’ behavior. Most children prefer to spend their ‘free’ time on the floor. Possibly, this ‘need’ has more to do with the child’s developmental age, than it does with their chronological age.
Or perhaps, as ‘late’ walkers, its due to the child experiencing more time, comfortably on the floor. Whatever the reason, on the ‘floor’ is probably where you are going to find your child, most times of the day. During their ‘floortime’ may be where you can meet their needs. They will not be spending their ‘free’ time in a chair, nor on their bed. Although at bedtime, some children will ‘line-up’ their toys, as part of their ‘sleep’ ritual. On his stomach, Sonny hangs over the bed and lines his Hot Wheel cars up on the floor.
DIR/Floortime helps children reach six developmental milestones, crucial for emotional and intellectual growth. They are:
Basically, DIR/Floortime Play is a special kind of play where you are harnessing all the abilities of the child, by tailoring your relationship to the child’s nervous system. You are having fun because you are following the child’s leads and interests. Then when the child looks at you, or giggles, or talks to you, it’s meaningful. It’s not contrived, it’s not forced, and it’s not a rote skill. That’s what makes DIR/Floortime Play special. Retrieved online from – autismresourcefoundation.org/
What makes DIR/Floortime play different from typical play, is that that both parent and child are having fun. Over time, the fun is in you challenging your child to meet six developmental milestones (respond, play, learn, speak, act,& move), to the highest level the child can accomplish. He or she may not be capable of all six initially, but eventually they will get there.” Retrieved online from autism.about.com/
Rudy (2020) says that Social Skills Therapy, such as ‘Floortime’ (DIR/Floortime), and Relationship Development Intervention (RDI), and Social-Communication Emotional Regulation and Transactional Support (SCERTS) are developmental therapies. These are intended to work on building the ASD child’s emotional skills, relationship and bonding skills; as well as expanding their abstract thinking. She stresses that these types of therapies are usually paid for ‘out-of-pocket’, but eventually can be done by the whole family.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 4. OT
2. Cognitive-Behavioral Therapy (CBT)
This Cognitive-Behavioral Therapy (CBT) program is being added, because the focus of this therapy is ‘Daily Living Skills’. Studies have shown that parents worry about their child’s total lack of motivation in this area.
CBT was originally used in the Mental Health Community, in addition to medication; for anxiety, phobias, specific fears, obsessive worrying, and compulsive behaviors. Now, this therapy is used for children with autism spectrum disorder, to help them address social issues, as well as learning daily living skills.
According to Wood, et al. (2011), there is a strong link between a child’s ‘high anxiety’ and their ‘low motivation’, when learning necessary daily living skills.
In this study, developmentally appropriate practical skills necessary for daily personal care, ranged from –
- Dressing oneself, to – avoiding unhealthy habits.
- Putting things away, to – safe use of household cleaning products.
- Learning to tell time – to knowing it’s unsafe to go with strangers.
This study intended to find ways to help children from ages 7 years to 11 years, become more self-sufficient. The intent was also to help parents and children maintain gains, over the course of years, not just months. As a result of this therapy, the children in the study were found to be more successful, because they were no longer focused on their anxieties, or other related interferences instead of learning.
A study by Rotheram-Fuller & MacMuller (2011), said that CBT was originally used for patients with extreme anxieties to include –
- Separation anxiety
- School phobias
- Specific fears & obsessive worrying
- Compulsive behaviors
The CBT therapy also has a pharmacological component. In addition to therapy, the patient receives antipsychotics, and/or antidepressants, to deal with underlying issues related to social problems. In this study, parents were also trained to work with their child, using relaxation and problem-solving strategies. Together, parent and child learned ways to combat their symptoms, by changing to more ‘positive’ feelings and thoughts about certain events and interactions.
Wood, et al. (2014) explored a study which compared cognitive behavioral therapy (CBT) with treatment-as-usual on a small group of 7-11-year-olds. They did a baseline before treatment; observing social communication and emotional regulation, among students. CBT therapy was designed to help the psychiatric disorders of pediatric Obsessive Compulsive Disorder (OCD), anxiety, and disruptive behavior disorder.
They say that many programs, that proceeded without the addition of anti-psychotic medication, were found to have a poor treatment response. in terms of generalization, and/or maintenance of desired skills. Consequently, that wasn’t an outcome they were looking for.
< My Thoughts > “…generalization and/or maintenance of desired skills.”
Hopefully, necessary generalization and maintenance of most learned skills can be achieved by all therapy programs. This means that the child, after participating in an intense and extensive program, would automatically use many or most of the skills, when outside of the ‘setting’ in which they were learned. Although, realistically some follow-up would be required from time to time to confirm generalization; and also, to keep improvements in place.
Krebs (2016) studied young people with ASD and co-occurring Obsessive-Compulsive Disorder (OCD), but found that they did not respond as well to CBT therapy as their typically developing counterparts. Noted too, was that they had difficulties in generalizing the behavior principles from one situation to another. Also, the gains that were made, didn’t seem to be maintained long term, but there was not much follow-up, to show one way or the other. This study also discussed an ‘enhanced’ protocol.
< My Thoughts > “…enhanced’ protocol.”
Apparently, there are modified CBT programs for those persons showing ‘more’ severe or resistant problems. Also, these programs seem to be more successful when they are ‘age appropriate’, and working within, or building on skills the person already has. In addition, all of this needs to work within an established, or ongoing therapy, which the person is receiving. One may be wise to ask for a ‘trial period’, before signing any commitments.
Maughan & Weiss (2017) examined parents being involved in their child’s treatment, to determine if they also benefited from their participation. The literature maintains that both parents and children improve with these emerging mindfulness and acceptance-based therapies. This is given that the challenging child behavior is also associated with, or the cause of the parental stress. CBT therapy works to improve parent-child interaction, especially when the parents make positive comments about the child. Post-treatment, parents need to continue to be less stressed and more positive towards their child, for best results to continue.
< My Thoughts > “…parents make positive comments…”
This program relies a great deal on parents making positive comments, and showing an encouraging attitude towards using the protocol. In addition, the parental expectation towards a positive outcome, and/or the final results, will depend upon the ongoing positive participation provided by both parent and child. This, unlike other mentioned programs, also trains the parent how to successfully relate to their child.
Kose, et al. (2018) believe studies show that parental involvement, personalized treatment metaphors, self-monitoring, and positive reinforcement is necessary. CBT therapy makes use of visuals, clear language for instructions; modification with visual aids, cues, and considerable parent involvement.
< My Thoughts > “…considerable parent involvement.”
One cannot simply hand their child over to a therapist and come back expecting that the child has been ‘changed’ or ‘fixed’. There are no Best Practices studies on using ‘Visuals;’ such as visual schedules, and/or checklists, etc. But, from both classroom, and ‘Sonny’ experience, using these can be very effective. For older individuals, engaging them in making these visual enhancements themselves, with guidance, can be a bonus benefit.
All of these provide successful opportunities to have an effective program. The first line of treatment for the most known autism comorbid disorder, Obsessive Compulsive Behaviors (OCB), is usually CBT therapy. OCB is characterized by repeated intrusive thoughts and distressing compulsive acts. This study also discusses the treatment needs of individuals, especially for adults and aging ASD populations; with other varying clinical presentations.
Sicile-Kira, 2004) suggests that 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.
For behavior intervention to be successful in older children, the treatment must be a collaborative effort between the family, home, teachers, therapists, and school personnel. Also, parents may have difficulty buying into any sort of behavior management.
Also, just meeting a new person, therapist, teacher, etc., may exaggerate a child’s natural temperament; good or not so good. If your child doesn’t warm up to strangers, try allowing a meeting in a more comfortable setting. For instance, in a place they like 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 they like to go.”
A place our Sonny likes to go is Mc Donald’s. Meeting someone new, like interviewing a caregiver or even a therapist can be complicated. Meetings are more successfully attempted for us at Mickey D’s. The interviewing process goes more smoothly while munching on fries and washing it down with a favorite soda or shake. 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, due to his first connection with that person in his preferred place.
REFERENCES: UNIT 7-1, WHO MAY HELP?
OTHER THERAPIES, Section 1 (Continued); 2. CBT
Kose, L., Fox, L., et al. (2018). Effectiveness of Cognitive Behavioral Therapy for Individuals with Autism Spectrum Disorders and Comorbid Obsessive-Compulsive Disorders: A Review of the Research; Journal of Physical Disability; V30, p69-87.
Krebs, G., Murry, K., et al. (2016). Modified Cognitive Behavior Therapy for Severe, Treatment-Resistant Obsessive-Compulsive Disorder in an Adolescent with Autism Spectrum Disorder; Journal of Clinical Psychology; V72:11, p1162-1173.
Maughan, A. & Weiss, J. (2017). Parental Outcomes Following Participation in Cognitive Behavior Therapy for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V47, p3166-3179.
Rotheram-Fuller, E. & MacMuller, L. (2011). Cognitive-Behavioral Therapy for Children with Autism Spectrum Disorder; Psychology in the Schools; V48:3.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; Penguin Random House Company; New York, N. Y.
Wood, J., Fuji, C., et al. (2014). Impact of Cognitive Behavioral Therapy on Observed Autism Symptom Severity During School Recess: A Preliminary Randomized, Controlled Trial; Journal of Autism Developmental Disorders; V44, p2264-2276.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 3. DIR
3. Developmental, Individual Differences, Relationship-Based Approach (DIR/Floortime; also called “Floortime” or Floortime Play)
We call the model the “DIR/Floortime Model” – because the “D” part means we focus directly working on what the child needs’ like working on engagement or two-way communication. The “I” is focusing in on the child’s individual ways of dealing with sensory sensations, like being ‘over’ or ‘under’ reactive. The “R” is learning relationships that are tailored to the child’s nervous system; meeting them where they are, developmentally. All of this, makes DIR a special kind of play.
According to Dr. Stanley Greenspan, the originator of Floortime, it is based on finding the child’s natural interest. What do they like to do? This means keeping the child in a ‘receptive’ mode. When s/he is ‘stimming’, then use that as an opportunity to identify the motivation, and to deepen their engagement. Use building on their natural interest as a motivation, by doing what they enjoy. Retrieved online from – https://www.icdl.com/dir
DIR/Floortime Play Therapy focuses on emotional and relational development (feelings towards, and relationships with parents and caregivers). It also focuses on how the child deals with sights, sounds, and smells. This therapy usually takes place in six to ten 20 – 30 minutes sessions, daily; depending on the extent of the challenge involved.
< My Thoughts > “…building on their natural interest…”
Hopefully the theme throughout this book has been, as the title says – Know your child, and know autism. Sonny, so often, shows us that he is smart, curious, and a guy that you just love being around – when he’s not swallowed up by his autism. Getting past your child’s ’debilitating‘ autism influences, while taking advantage of his or her ability to focus intensely, can be the big autism advantage.
Approach your child’s ‘therapy’ with the highest of expectations. Meet them at their ‘perseverance’ level; while finding ways to stay flexible to your child’. As Greenspan believed, it’s important to get and keep your child in a ‘receptive’ mode. Be careful about getting them into some kind of ‘competitive’ mindset. A ‘you’ against ‘them’ session, may not be very productive. We have a saying, “Let Sonny make the idea.” By leading him into an activity with all the ‘salesmanship’ we can muster, he usually will at least try once. If not, he will try later, when he ‘makes the idea’.
The main purpose of DIR/Floortime therapy, is to help the child with social relationships, mutual interactions, and behavior; in a natural setting. It takes into account personality disorders, plus behavioral problems such as –
- Agitated and irritable moods
- Low adaptability
- Lack of self-caring ability
- Lingual complications
- Various learning disabilities
DIR/Floortime Play is a children’s game which lasts 20 – 30 minutes, but is not just for children. Parents, treatment team members, and even other family members work together on this integrated model. Because Floortime Play therapy empowers the whole family, it is said to lead to a more visible improvement for the whole family.
< My Thoughts > “…DIR/Floortime Play…”
It seems to be ‘understood’ that this therapy is called ‘DIR/Floortime’, because most sessions take place on the ‘floor’. Seat behavior, among children with autism is a ‘learned’ behavior. Most children prefer to spend their ‘free’ time on the floor. Possibly, this ‘need’ has more to do with the child’s developmental age, than it does with their chronological age.
Or perhaps, as ‘late’ walkers, its due to the child experiencing more time, comfortably on the floor. Whatever the reason, on the ‘floor’ is probably where you are going to find your child, most times of the day. During their ‘floortime’ may be where you can meet their needs. They will not be spending their ‘free’ time in a chair, nor on their bed. Although at bedtime, some children will ‘line-up’ their toys, as part of their ‘sleep’ ritual. On his stomach, Sonny hangs over the bed and lines his Hot Wheel cars up on the floor.
DIR/Floortime helps children reach six developmental milestones, crucial for emotional and intellectual growth. They are:
- Self-regulation and interest in the world outside themselves
- Intimacy, or engagement in human relations
- Two-way communication between persons
- Complex communication abilities
- Emotional ideas expressed and/or communicated
- Emotional thinking and feeling identified
Basically, DIR/Floortime Play is a special kind of play where you are harnessing all the abilities of the child, by tailoring your relationship to the child’s nervous system. You are having fun because you are following the child’s leads and interests. Then when the child looks at you, or giggles, or talks to you, it’s meaningful. It’s not contrived, it’s not forced, and it’s not a rote skill. That’s what makes DIR/Floortime Play special. Retrieved online from – autismresourcefoundation.org/
What makes DIR/Floortime play different from typical play, is that that both parent and child are having fun. Over time, the fun is in you challenging your child to meet six developmental milestones (respond, play, learn, speak, act,& move), to the highest level the child can accomplish. He or she may not be capable of all six initially, but eventually they will get there.” Retrieved online from autism.about.com/
Rudy (2020) says that Social Skills Therapy, such as ‘Floortime’ (DIR/Floortime), and Relationship Development Intervention (RDI), and Social-Communication Emotional Regulation and Transactional Support (SCERTS) are developmental therapies. These are intended to work on building the ASD child’s emotional skills, relationship and bonding skills; as well as expanding their abstract thinking. She stresses that these types of therapies are usually paid for ‘out-of-pocket’, but eventually can be done by the whole family.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 4. OT
4. Occupational Therapy (OT)
Occupational therapy teaches skills that help the person live as independently as possible. The role of the Occupational Therapist is to promote, maintain, and develop the skills needed by the autistic child to be functional at home, at school, and beyond. The length, and number of therapy sessions, per week, are determined by the child’s age and need; also, sessions will vary in time and setting.
Occupational Therapist services for the autistic child, include an assessment, intervention, and follow-up. Therapists help with feeding/eating skills, dressing and toileting skills; as well as educational, playing, and social activities. Because some autistic children find it difficult to perform everyday tasks, while processing and acting upon information received through their sensory processing system. Sensory processing problems can result in motor coordination difficulties, behavioral issues, cognitive impairment, anxiety, learning difficulties, and more. Retrieved online from – occupationaltherapyot.com/
Hinds (2014) finds what seemed to be their best option, Occupational Therapy. Denise truly cared about Ryan and I liked the way she worked with him. She made therapy fun and motivated him to want to do more. She used his love of counting, and his ‘restricted interests’ in hotels, elevators, and now escalators; to help him focus on his therapy goals.
I carefully studied what Denise did when she worked with Ryan. Our health insurance only covered ten sessions of OT and, when our measly allotment expired, Frank and I continued with what she started. We set up obstacle courses in our basement, that had Ryan’s favorite computer game at the finish line. We bought a swing like Denise used and hung it in our basement. During bath time, he played with squirt bottles, with different colored water to help develop his fine motor skills and hand strength. The activities Denise did with Ryan taught me how important it was for him to exercise and to move his body, in a coordinated manner. We eventually added swimming to his therapy program.
Ryan’s occupational therapy sessions showed us that sustained, coordinated, intentional physical movement helped Ryan’s autism decrease; in frequency and intensity. At the same time, his more normal looking behaviors increased. Exercise and movement became important to making him more like other kids. This was the closest thing we had to that miracle cure I kept praying for.
< My Thoughts > “…the closest thing we had to that miracle cure…”
Advice to parents by the Centers for Disease Control & Prevention (CDC); https://www.cdc.gov – More reliable than miracle cures, parents should seek out the ‘thoroughly researched’ and ‘well-documented data’ derived from carefully controlled clinical research. And, not just what insurance companies are used to approving.
Note: More about INSURANCE coverage in UNIT 6, Ch. 2.
Ambersley (2013) believes that sometimes it was just plain good fortune that we met the right people at the right time. Some examples of taking advantage of early intervention opportunities for Aaron included finding a good speech and language pathologist, and occupational therapist that worked extensively and primarily with children with autism.
Occupational therapy, physical therapy, speech and language, and social development were the four areas we targeted. We adapted our schedules to our son’s needs. These four windows of opportunity were the key to his long-term development.
Another lesson we learned through this process was the importance of having all current and past medical records, and historical data in one place.
If you move your family residence, it is essential and necessary to get copies of your child’s records; making the transition from one therapist to another, easier.
Because of a lack of adequate medical data, some therapists wanted to make their own evaluation, which resulted in more cost to us, and could have been avoided. This kind of rework took a lot of valuable therapy time away from Aaron.
Our son went through a phase of repetitive ticks and self-indulging behaviors. This was apparent if he was disinterested in the caregiver.
Behavior modification has been a slow and painful process for all of us. Today most of these behaviors and symptoms have fully abated.
Now that we have passed over many of the inhibiting behaviors, other opportunities have emerged to help form Aaron’s character, by sharpening his personality, individuality, and mindset.
< My Thoughts > “…other opportunities have emerged…”
Perhaps, after the decline of the inhibiting behaviors, less time will be spent on therapy sessions, and more time can be spent enjoying activities with the family.
Cariello (2015) recalls how on January 2011, seven-year-old Jack’s behavior started to change more dramatically. He was afraid of ordinary things.
From peeing in the morning to showering at night, every move had become a slow torturous crawl through the muddy waters of his anxiety.
Medication seemed like a last resort to us, and Joe and I resolved to explore alternative methods to help Jack cope. We couldn’t imagine having him taking anti-anxiety medicine every single day, potentially for the rest of his life.
Instead, for a month, the occupational therapist brushed him at school, while Joe and I took turns at home. (Brushing technique, called the Wilbarger Protocol, to reduce sensory defensiveness, by using a small brush to apply pressure on the limbs and back.)
Note: More about Wilbarger Brushing Protocol in UNIT 7-9 & UNIT 4, Ch. 3 – Sensory.
UNIT 7-1, WHO MAY HELP? OTHER THERAPIES, Section 1 (Continued); 5. PECS
5. Picture Exchange Communication System (PECS)
PECS uses picture symbols (visual supports on cards, pages, or in books) to teach communication skills. The learner is taught to use picture symbols to ask for objects or activities, ask and answer questions, and have a conversation. In 20-30 minute sessions, children learn a communication system whereby they exchange different symbols with a partner, as a means to communicate a ‘want’.
Intended to increase speech, language, social and communicative development, PECS is for persons from 2 years to adult. Sometimes PECS becomes a part of a Speech Therapy Program, for the child with autism. PECS is often used by Speech/Language pathologists; therapists who specialize in treating language problems and speech disorders.
Note: More about Speech/Language Therapy under Unit 3, Ch 2.
Four main communication behaviors are addressed –
The PECS intervention is taught in six ‘Phases’, by a trained ‘communicative partner’; using ‘visual supports’ which can be made, or purchased readymade.
In Phase 1, the learner is to look at each picture, reach for it, pick it up, and hand the picture/symbol to their ‘trained’ communication partner. These basic skills are needed to effectively communicate, using PECS exchange system. The child moves through the Phases, with at least 30 ‘exchange’ opportunities, between child and communication partner, daily.
Once learners have progressed through all six phases of PECS training, they are fairly proficient in seeking their communication book, discriminating among pictures, constructing sentence strips, finding a communication partner, and completing the exchange. Retrieved online from – Picture Exchange Communication System: Steps for Implementation; P16; National Professional Development Center on ASD.
PECS can also be used through an iPad program or Augmentative/Alternative Communication (AAC) device. Retrieved online from – http://autism.about.com/od/treatmentoptions/a/PECS.htm
< My Thoughts > “…30 ‘exchange’ opportunities…”
The time involved in mastering the PECS system, depends on how it is presented, one-on-one, in a group, on an iPad; or all three. It also depends on how long it takes the individual to pass through each phase. Considering, that there are 5 to 6 PECS Phases through which to advance.
Siri (2010) says that before the iPad came along, Alex had to rely on gestures, approximations, and PECS images to communicate his needs and wants. Alex would frequently melt down, and even turn aggressive towards himself, as he became exasperated with his inability to convey his requirements.
Fleury, et al. (2019) found the best hope for children and youth with ASD seemed to be the many committed school-based intervention treatment programs. Programs which followed the concept of Evidence-Based-Practice (EBP), which were supported by the Individuals with Disabilities Education Act (IDEA). They point out that to use anything other than an EBP, would be to take time and money away from proved outcomes.
PECS is a technique which teaches picture identification, functional communication, prompting responses, and encouraging an exchange; in a natural setting. The initial stages of the program teach the individual to request a desired food, or activity item, for a basic need. Later phases teach back-and-forth communication for social purposes; asking and answering questions.
Hinds (2014) felt her son, Ryan, struggled with each of the domains that were characteristic of autism. He was frustrated and already stranded on Autism Island, hidden from his family. We didn’t notice that Ryan was missing many of the essential parts of communication and didn’t have any small talk. He didn’t use what speech therapists call, minimal encouragers such as saying, “Uh huh” or non-verbal communication like a head nod. He seldom used language to show interest in anyone else. We should have worried.
Ryan had conversations with objects. But it was his repetitive behavior that showed the depth of Ryan’s autism most clearly – had we been looking. Later, Ryan started to echo many of the things we said. He would also repeat entire TV commercials verbatim, like the “Plug it in” Glade air freshener commercial. I didn’t know it then, but this is called scripting, another sign of autism. When Ryan wanted me to pick him up, he’d say “Hold you” instead of, “Hold me.” To us, this Ryan Speak was adorable! Pronoun reversal was another autism sign we didn’t recognize.
His limited language was a huge part of his behavior issues then. Ryan didn’t have the language to communicate his wants. We never used visual schedules or PECS (a picture communication system that nonverbal and pre-verbal children use to help communicate their needs.).
This was before PECS existed. There were no pictures to point to or an iPad, or special Smartphone apps. We guessed at what Ryan wanted in order to avoid a confrontation. In the absence of communication, ritual and rigidity and sameness are the best ways for a child to ensure at least some of his needs would be consistently met.
The ability to communicate one’s wants and needs helps in decreasing frustrations which are provoking negative behaviors and helps in increasing the opportunity to learn to communicate one’s emotions and expressive language.
This learning process may take weeks, months or years to complete. Throughout this time, learners are encouraged to use PECS in various different settings and with different partners. Retrieved online from: http://autism.about.com/od/treatmentoptions/a/PECS.htm/
< My Thoughts > “…encouraged to use PECS…”
Within the autism community, the term PECS (usually pronounced "pex") has become synonymous with picture cards of various types. Homemade Picture Exchange Communication System allow for picture-based communication, which is very nearly free. All you need is a magazine full of pictures, a pair of scissors, a sturdy folder or loose-leaf notebook and some Velcro. There are also commercially made programs available.
The child learns to progress through the numerous phases in the program. In the natural setting, when the child is asked verbally or in sign language. “What do you want?”, the child responds with a picture from the picture board, or a notebook of PECS pictures. Showing a card, means “I want,” for the non-verbal. The child exchanges a PECS card for what is wanted.
Picture Exchange Communication System (PECS) is a great tool in helping all nonverbal children with or without autism communicate without words. PECS is used in a variety of ways–starting with a picture exchange – to allow the child to make choices and communicate his/her needs. When children can communicate and express their needs, behaviors often can be minimalized resulting in a much happier child. Retrieved online from – http://www.tacanow.org/family-resources/pecs/
< My Thoughts > “…PECS communicate and express their needs...”
At school, they started Sonny on the PECS system of communication. At first, we used the PECS graphics for the items, but when he didn’t respond to them, we switched to pictures cut from print ads. He is very much a visual learner, so I can understand why he likes to see the real picture. He does like the notebook they made for him, which has pockets for his PECS cards. He insists that it be put on his bookshelf, with his other books. He just doesn’t see it as a way to ask for what he ‘wants’. He uses his communication board for that.
The problem for Sonny and PECS, is that he is not high-functioning enough, nor is he coordinated enough with fine-motor skills, such as using his pincher fingers. He also has difficulty scanning a selection of cards, in order to make a choice that fits his needs. Then, the concept of presenting that PECS card to someone in exchange for the item, is just too many steps. From ‘wanting’ to ‘getting’ has too many variables for him.
Too much sequencing performance is required for him to be successful. Plus, learning this program takes time and patience, which he is sorely lacking. And, everyone in the family has to be trained in the program, to make it work successfully. Sonny will look for a card in his PECS notebook to ask for a certain toy or snack, but not as a response to an activity, or as a ‘task’ performance.
REFERENCES: UNIT 7-2, CAMS CHAPTER 3, SECTION 1;
3. DIR/Floortime, 4. OT, 5. PECS.
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Fleury, V., Trevors, G., et al. (2019). Public Perception of Autism Treatments: The Role of Credibility & Evidence; Journal of Autism & Developmental Disabilities; V49, p1876-1886.
Kose, L., Fox, L., et al. (2018). Effectiveness of Cognitive Behavioral Therapy for Individuals with Autism Spectrum Disorders and Comorbid Obsessive-Compulsive Disorders: A Review of the Research; Journal of Physical Disability; V30, p69-87.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Krebs, G., Murry, K., et al. (2016). Modified Cognitive Behavior Therapy for Severe, Treatment-Resistant Obsessive-Compulsive Disorder in an Adolescent with Autism Spectrum Disorder; Journal of Clinical Psychology; V72:11, p1162-1173.
Maughan, A. & Weiss, J. (2017). Parental Outcomes Following Participation in Cognitive Behavior Therapy for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V47, p3166-3179.
Rotheram-Fuller, E. & MacMuller, L. (2011). Cognitive-Behavioral Therapy for Children with Autism Spectrum Disorder; Psychology in the Schools; V48:3.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online; Retrieved online from – https://www.verywellhealth.com/the-best-treatment-for-autism-4585131/
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; Penguin Random House Company; New York, N. Y.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Wood, J., Fuji, C., et al. (2014). Impact of Cognitive Behavioral Therapy on Observed Autism Symptom Severity During School Recess: A Preliminary Randomized, Controlled Trial; Journal of Autism Developmental Disorders; V44, p2264-2276.
PECS uses picture symbols (visual supports on cards, pages, or in books) to teach communication skills. The learner is taught to use picture symbols to ask for objects or activities, ask and answer questions, and have a conversation. In 20-30 minute sessions, children learn a communication system whereby they exchange different symbols with a partner, as a means to communicate a ‘want’.
Intended to increase speech, language, social and communicative development, PECS is for persons from 2 years to adult. Sometimes PECS becomes a part of a Speech Therapy Program, for the child with autism. PECS is often used by Speech/Language pathologists; therapists who specialize in treating language problems and speech disorders.
Note: More about Speech/Language Therapy under Unit 3, Ch 2.
Four main communication behaviors are addressed –
- Picture requests
- Imitated verbalizations
- Picture discrimination
- Related speech
The PECS intervention is taught in six ‘Phases’, by a trained ‘communicative partner’; using ‘visual supports’ which can be made, or purchased readymade.
In Phase 1, the learner is to look at each picture, reach for it, pick it up, and hand the picture/symbol to their ‘trained’ communication partner. These basic skills are needed to effectively communicate, using PECS exchange system. The child moves through the Phases, with at least 30 ‘exchange’ opportunities, between child and communication partner, daily.
Once learners have progressed through all six phases of PECS training, they are fairly proficient in seeking their communication book, discriminating among pictures, constructing sentence strips, finding a communication partner, and completing the exchange. Retrieved online from – Picture Exchange Communication System: Steps for Implementation; P16; National Professional Development Center on ASD.
PECS can also be used through an iPad program or Augmentative/Alternative Communication (AAC) device. Retrieved online from – http://autism.about.com/od/treatmentoptions/a/PECS.htm
< My Thoughts > “…30 ‘exchange’ opportunities…”
The time involved in mastering the PECS system, depends on how it is presented, one-on-one, in a group, on an iPad; or all three. It also depends on how long it takes the individual to pass through each phase. Considering, that there are 5 to 6 PECS Phases through which to advance.
Siri (2010) says that before the iPad came along, Alex had to rely on gestures, approximations, and PECS images to communicate his needs and wants. Alex would frequently melt down, and even turn aggressive towards himself, as he became exasperated with his inability to convey his requirements.
Fleury, et al. (2019) found the best hope for children and youth with ASD seemed to be the many committed school-based intervention treatment programs. Programs which followed the concept of Evidence-Based-Practice (EBP), which were supported by the Individuals with Disabilities Education Act (IDEA). They point out that to use anything other than an EBP, would be to take time and money away from proved outcomes.
PECS is a technique which teaches picture identification, functional communication, prompting responses, and encouraging an exchange; in a natural setting. The initial stages of the program teach the individual to request a desired food, or activity item, for a basic need. Later phases teach back-and-forth communication for social purposes; asking and answering questions.
Hinds (2014) felt her son, Ryan, struggled with each of the domains that were characteristic of autism. He was frustrated and already stranded on Autism Island, hidden from his family. We didn’t notice that Ryan was missing many of the essential parts of communication and didn’t have any small talk. He didn’t use what speech therapists call, minimal encouragers such as saying, “Uh huh” or non-verbal communication like a head nod. He seldom used language to show interest in anyone else. We should have worried.
Ryan had conversations with objects. But it was his repetitive behavior that showed the depth of Ryan’s autism most clearly – had we been looking. Later, Ryan started to echo many of the things we said. He would also repeat entire TV commercials verbatim, like the “Plug it in” Glade air freshener commercial. I didn’t know it then, but this is called scripting, another sign of autism. When Ryan wanted me to pick him up, he’d say “Hold you” instead of, “Hold me.” To us, this Ryan Speak was adorable! Pronoun reversal was another autism sign we didn’t recognize.
His limited language was a huge part of his behavior issues then. Ryan didn’t have the language to communicate his wants. We never used visual schedules or PECS (a picture communication system that nonverbal and pre-verbal children use to help communicate their needs.).
This was before PECS existed. There were no pictures to point to or an iPad, or special Smartphone apps. We guessed at what Ryan wanted in order to avoid a confrontation. In the absence of communication, ritual and rigidity and sameness are the best ways for a child to ensure at least some of his needs would be consistently met.
The ability to communicate one’s wants and needs helps in decreasing frustrations which are provoking negative behaviors and helps in increasing the opportunity to learn to communicate one’s emotions and expressive language.
This learning process may take weeks, months or years to complete. Throughout this time, learners are encouraged to use PECS in various different settings and with different partners. Retrieved online from: http://autism.about.com/od/treatmentoptions/a/PECS.htm/
< My Thoughts > “…encouraged to use PECS…”
Within the autism community, the term PECS (usually pronounced "pex") has become synonymous with picture cards of various types. Homemade Picture Exchange Communication System allow for picture-based communication, which is very nearly free. All you need is a magazine full of pictures, a pair of scissors, a sturdy folder or loose-leaf notebook and some Velcro. There are also commercially made programs available.
The child learns to progress through the numerous phases in the program. In the natural setting, when the child is asked verbally or in sign language. “What do you want?”, the child responds with a picture from the picture board, or a notebook of PECS pictures. Showing a card, means “I want,” for the non-verbal. The child exchanges a PECS card for what is wanted.
Picture Exchange Communication System (PECS) is a great tool in helping all nonverbal children with or without autism communicate without words. PECS is used in a variety of ways–starting with a picture exchange – to allow the child to make choices and communicate his/her needs. When children can communicate and express their needs, behaviors often can be minimalized resulting in a much happier child. Retrieved online from – http://www.tacanow.org/family-resources/pecs/
< My Thoughts > “…PECS communicate and express their needs...”
At school, they started Sonny on the PECS system of communication. At first, we used the PECS graphics for the items, but when he didn’t respond to them, we switched to pictures cut from print ads. He is very much a visual learner, so I can understand why he likes to see the real picture. He does like the notebook they made for him, which has pockets for his PECS cards. He insists that it be put on his bookshelf, with his other books. He just doesn’t see it as a way to ask for what he ‘wants’. He uses his communication board for that.
The problem for Sonny and PECS, is that he is not high-functioning enough, nor is he coordinated enough with fine-motor skills, such as using his pincher fingers. He also has difficulty scanning a selection of cards, in order to make a choice that fits his needs. Then, the concept of presenting that PECS card to someone in exchange for the item, is just too many steps. From ‘wanting’ to ‘getting’ has too many variables for him.
Too much sequencing performance is required for him to be successful. Plus, learning this program takes time and patience, which he is sorely lacking. And, everyone in the family has to be trained in the program, to make it work successfully. Sonny will look for a card in his PECS notebook to ask for a certain toy or snack, but not as a response to an activity, or as a ‘task’ performance.
REFERENCES: UNIT 7-2, CAMS CHAPTER 3, SECTION 1;
3. DIR/Floortime, 4. OT, 5. PECS.
Ambersley, K. (2013). Autism: Turning on the Light: A Father Shares His Son’s Inspirational Life’s Journey through Autism; eBook Edition.
Cariello, C. (2015). What Color is Monday? How Autism Changed One Family for the Better; eBook Edition.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal; eBook Edition.
Fleury, V., Trevors, G., et al. (2019). Public Perception of Autism Treatments: The Role of Credibility & Evidence; Journal of Autism & Developmental Disabilities; V49, p1876-1886.
Kose, L., Fox, L., et al. (2018). Effectiveness of Cognitive Behavioral Therapy for Individuals with Autism Spectrum Disorders and Comorbid Obsessive-Compulsive Disorders: A Review of the Research; Journal of Physical Disability; V30, p69-87.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Krebs, G., Murry, K., et al. (2016). Modified Cognitive Behavior Therapy for Severe, Treatment-Resistant Obsessive-Compulsive Disorder in an Adolescent with Autism Spectrum Disorder; Journal of Clinical Psychology; V72:11, p1162-1173.
Maughan, A. & Weiss, J. (2017). Parental Outcomes Following Participation in Cognitive Behavior Therapy for Children with Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V47, p3166-3179.
Rotheram-Fuller, E. & MacMuller, L. (2011). Cognitive-Behavioral Therapy for Children with Autism Spectrum Disorder; Psychology in the Schools; V48:3.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online; Retrieved online from – https://www.verywellhealth.com/the-best-treatment-for-autism-4585131/
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; Penguin Random House Company; New York, N. Y.
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Wood, J., Fuji, C., et al. (2014). Impact of Cognitive Behavioral Therapy on Observed Autism Symptom Severity During School Recess: A Preliminary Randomized, Controlled Trial; Journal of Autism Developmental Disorders; V44, p2264-2276.
DISCLAIMER (2024) Know Autism – Know Your Child: with < My Thoughts > by Sara Luker; 2024
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. 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 any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.
Just to let you know that I, Sara Hayden Luker, have put forth my best efforts in presenting what I have learned about autism, by sharing the stories and studies of those who have gone before us. Any author’s mention of products, services, treatments, and interventions or actions are not to be considered an endorsement, thereof. Know that to some, autism is an ‘unregulated business’. 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 any of this material indicates your acceptance of this disclaimer.
This is a Personal Use Electronic Download. By downloading, you hereby agree and acknowledge that you are not acquiring any right, title or interest in, or to, the material; nor any associated copyrights, other than the right to possess, hold and use for personal, non-commercial purposes. Furthermore, you agree that you will: (i) not scan, copy, duplicate, distribute or otherwise reproduce the material(s) to resell, (ii) not use the material(s) for any commercial purposes. By purchasing/downloading you agree to these terms unconditionally. No ‘rights’ are given or transferred.