A Child’s Journey Out of Autism: One Family’s Story of Living in Hope & Finding a Cure by Leeann Whiffin (2009). Extended Book Review with < My Thoughts > by Sara Luker
Excerpts from the book – (8% indicates location in the Kindle version of the book, instead of page numbers).
8% Thomas the Train has taken over his mind. But he is especially fanatical about James, the red engine. He has several Thomas movies we rotate…I feel a pang of guilt each time I let him watch one, but sometimes it’s the only way I can get anything done. I think it’s probably just a phase.
9% Mom turns and watches Clay. “Leeann, he doesn’t seem to even notice we’re here.” I swallow. My throat sticks. I swallow again. I know he’s different.
< My Thoughts > "...Thomas the Train..."
It seems that Thomas and his friends appeal to kids with autism, especially. They have 'sensory' appeal with their large eyes, easy-to-read expressions. They have 'social' appeal with stories of trains that get along, show teamwork, and friendship. Sounds of trains, train timetables, and train 'alikeness', and lines of trains, all seem to resonate with all ages of autism. Marketing of Thomas the Train allows for DVDs, toys, books, figurines, clothes, and much more.
9% It’s September and time for Clay’s fifteen-month well-child appointment. “You know, he used to call me ‘Mama,’ and he doesn’t do that anymore.” “Boys usually don’t pick up language as quickly as girls. He’ll catch up,” he reassured me. “Okay then, it looks like he’s due for his MMR vaccination…”
“That is something else I want to talk to you about.” We are very concerned about giving our son this vaccination, especially since we have a relative who was diagnosed with autism at age three and a half.” I unfold the piece of paper with an article by Dr. Andrew Wakefield who claimed to find Measles Virus in the guts of autistic children.
I handed him the article…I watch his eyes move through the article. “You’ve been misinformed…parents are being deceived into thing vaccinations are causing autism. This is simply not true. Clay is much more likely to get smallpox than autism,” he says, wheeling his stool closer and pointing his finger.
I feel trapped. I weigh my options. “It is important that we vaccinate him,” I finally admit. Clay’s face scrunches up and turns red as the needle slides into his upper thigh. He screams as big tears fall down his face.
Deisher, T. A., Doan, N.V. , et al. (2015) discuss the decision making process this way. In order to prove cause and effect –
< My Thoughts > "...He’ll catch up..."
Was the child meeting all of his or her developmental milestones BEFORE the vaccine? Denial is our worst enemy. I do think though, that doctors could give ‘vaccinations’ on a conservative timeline. Let the tot’s immune system recover between each dose.
16% Finally home, I hurry to the den and turn on the computer. I place my fingers on the keyboard and type “AUTISM”. My pinky finger hangs over the Enter key. My fear has a definition. I am afraid of what I might find.
Note: For further information on ‘Checklists’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 1 – How Will I Know It’s Autism? Chapter 1 Checklists, Chapter 2 Red Flags.
17% That evening, I go to bed unable to sleep, I go back downstairs. I force myself to look at the “Signs & Symptoms” checklist.
My eyes filled with tears as I looked at this description of my son on the computer.
Sifting through the masses of research could take years. After reading, I focus on the conclusions.
< My Thoughts > "...masses of research..."
“Sifting through the masses of research could take years.” Exactly why there is my Free ASD Book available here on this website.
17% I find a Time magazine article, “The Secrets of Autism,” by Madeleine Nash. At the end of the article it says, “Paradoxically, the very thing that is so terrible about autistic disorders – that they affect the very young – also suggests reason for hope.
Since the neural connections of a child’s brain are established through experience, well-targeted mental exercises have the potential to make a difference.” Another thing which catches my attention is that they say that early diagnosis has become increasingly important.
I discover that I don’t even have months.
< My Thoughts > "...I don’t even have months."
Early diagnosis allows for early intervention. Early intervention can save heartache and headaches. But, finding and prioritizing the appropriate intervention takes time and critical thinking. Most of all, it takes knowing your child, your family, and yourself.
Carlon, S., Carter, M., et al. (2014) tell us that 75 parents were surveyed to determine the decision-making process considered when choosing the type of intervention for their child. The survey revealed that parents thought their child’s individual needs were the first priority, followed by their ‘gut-feeling’ determined by having realistic goals for him or her. These became their guide, as opposed to a smooth sales-pitch, or someone else’s experience (because each child expresses autism differently).
The most popular interventions considered in this recent study were –
Note: For further information on ‘ABA’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7-1 – Who May Help? Other Therapies, Section 1: 1. ABA, 2. CBT, 3.DIR/Floortime, 4. OT, 5. PECS. UNIT 7- 4 – Who May Help? Section 4: CAMs.
16% My husband Sean says, “Maybe we should obtain a professional diagnosis.”
17% The next morning I call the office of Dr. Sam Coates, a pediatric psychiatrist, 20 miles south of us and schedule an appointment for an evaluation.
There are those extremely rare moments in which I catch a glimpse of the little boy who is hiding inside the farthest corner of a hollow shell…
My instinct as a mother tells me he’s in there. But, he’s falling deeper into oblivion as time goes on – further from my reach.
< My Thoughts > “...he’s in there…”
Yes, there are those moments with Sonny when he makes eye contact for a moment. In that moment, there is a connection. A connection that says, yes, I'm in here.
Wong, M., Heriot, S. (2007) know that the parents they have encountered mostly “maintain a hopeful outlook for their child’s future. This attitude enables them to pursue treatment options and cope with the day-to-day challenges and stress involved. They say that mothers especially, hold a sense of reaching the child and accepting the diagnosis, at the same time. The study they reviewed showed that even if the parents’ optimism was unrealistic, they continued to hold an overall hopeful view of the future for their child.
24% Dr. Coates tells us, “You are fortunate to have caught this at such a young age.”
25% “I feel venerable. Now it’s real. There’s no more hiding behind ignorance or denial…”
A 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…
28% “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. I’ve heard about a Dr. Jepson… maybe he can help Clay.
35% We play with Clay in the waiting room until the nurse calls us back. Dr. Jepson stands to shake our hands and says hi to Clay as he pats him on the back. I’m taken back by how young he looks. He begins by walking us through the biomedical approach to 'autism' using a PowerPoint presentation on his laptop.
36% Dr. Jepson’s Power Point Presentation –
Autism is a complex metabolic disorder that involves multiple body systems:
It begins with genetic susceptibility coupled with an environmental insult of one kind or another.
This sets off a chain of events resulting in the dysfunction of the four organ systems.
Treatments often include –
The latest research shows there seems to be a problem in the interaction of several biochemical pathways involved in the detoxification cycle of the body.
Obviously not all children are autistic, so most infants can handle the toxic load of heavy metals in the environment.
However, those children with the right genetic mix or predisposition are adversely affected.
< My Thoughts > "...genetic mix or predisposition..."
The reason a child is born with 'autism' is still unknown. A complex genetic mix or predisposition may be part of the cause, along with many other yet to be determined factors. But there seems to be no dominant nor recessive genetic influences, as there are with eye color.
Staff Writer, CAR Autism Roadmap (2020) tells us that unfortunately, CAMs are NOT ‘evidence-based’ treatments. ‘Evidence-based’ treatments have undergone rigorous scientific testing and proven to be effective for the specific conditions or populations they are intended for. CAMs are often considered by parents because they believe them to be ‘low risk’ interventions. Parents are influenced by anecdotal evidence, such as what has worked for a friend’s child.
< My Thoughts > "...worked for a friend’s child."
This is a flawed concept, and may be dangerous or even deadly. CAMs should only be considered on the advice of you child’s physician. Your pediatrician can refer you to the treatments they may feel helpful. Always consult a physician before stopping or starting any interventions. It takes a ‘team’ approach to alleviate autism symptoms. Along with diligence and constant follow-up.
Carlon, S., Carter, M., et al. (2014) say some people may feel that parents need to be supported in their choice of treatments for their children. However, it is important that CAM’s are not used as a substitute for conventional medicine in any patients; especially those with severe conditions.
A few of the CAM’s used by people in hopes of lessening the symptoms of autism are treatments such as:
This study says that parents are also cautioned by physicians that if they want to investigate CAM’s, to try ‘gentle’ treatments and to absolutely avoid invasive, unproven and potentially harmful ones. Many professionals feel that CAM’s are money traps for gullible and desperate parents. Because they know how drugs and diet interact with one another, I believe that your family doctors and specialists should always be consulted before introducing any new procedures, plans or programs.
Note: For further information on ‘investigate CAM’s’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7- 0 – Who May Help? Other Therapies, UNIT 7– 1 CAMs, through UNIT 7– 11 CAMs.
37% A combination of insults on a fragile immune system. “Because of their diminished immune system function many children more prone to ear infections, eczema, and sinusitis. Most of the time antibiotics again are prescribed to treat these illnesses, further exacerbating the problem.”
Dr. Jepson recommends some lab tests, including a hair analysis, urine organics acids test, Complete Blood Count (CBC), RBC minerals (measures nutrient mineral levels vs toxic mineral levels), liver panel, and a thyroid function test. He also recommends placing Clay on a strict gluten- (wheat) and casein (milk) free diet. In addition, there are supplements he recommends for Clay.
“Sean,” I say on the way home, “one of my biggest concerns is that there haven’t been any ‘gold standard’ studies proving the triggers he mentioned are the culprits.”
< My Thoughts > “...‘gold standard’ studies”
Clinical research refers to ‘gold standard’ studies as studies which have established a high level of rigor and reliability in their findings. They are methods which have undergone rigorous safety and efficacy testing, and close supervision by respected health experts.
Schaaf, R., Benevides, T., et al. (2014) believe that in terms of interventions, anything that “…has good reliability and validity as an outcome measure for functional behaviors is likely to improve the child’s ability to regulate behavior and learn functional skills. They go on to say that, children with ASD have to ‘learn’ the best ways for them to begin ‘processing and integrating sensory information’, appropriately.
76% I received an email from my Yahoo! Group regarding this new treatment called RDI. At first I blew it off as being the new treatment choice of the month, but as I started researching it further, I was really impressed with how it addresses the core deficits of autism.
I recently finished reading the book Relationship Developmental Intervention (RDI) with Young Children by Steven Gutstein. …I was floored at this new way of teaching our kids. It really makes sense.
There are additional activities you can do to reinforce it. It helps them learn nonverbal communication, social referencing, and to be more vigilant in their environment. I want Clay to not only be able to function in real life, but also have relationships and friends. Isn’t that really what life is all about? We need each other to enhance our quality of life.
Gutstein, S. & Greenspan, S. (2019) give us the basics of Relationship Development Intervention® (RDI), developed by psychologist Steven Gutstein. RDI is a family-based, behavioral treatment designed to address autism’s core symptoms. Developed to build on one’s ‘dynamic intelligence’, defined as the ability to think flexibly. Including integrating different incoming sensory information, appreciating different perspectives, and coping with change.
Note: For further information on ‘RDI’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7 – 2 Other Therapies, Section 2: RDI.
78% At our next team meeting, I pose a question – “What are Clay’s deficits?”
“It seems Clay still has a hard time with attention span, focusing, and impulsivity,” one member says.
Another adds, “He also doesn’t seem to contribute when in group activities unless specifically asked or singled out.
“I think RDI will help with all of these issues,” I say. “Now we know what we need to work on with him. I think RDI will fill in the holes we are seeing.”
82% The RDI activities dovetail our existing program by reinforcing what we are already teaching him, but also emphasize experience sharing in a relationship…teach him inhibitory control by stopping when I stop, starting when I start…
Everyone is amazed at how his language and expressions have really blossomed over the last six months. Still, I need to know exactly how he is doing in terms of IQ, social skills, and language. I want him evaluated by a professional…someone who doesn’t know him.
80% It’s almost two years since Clay’s diagnosis. I arrive at Dr. Gale’s office early. I take a deep breath before opening the door. “Hi, Dr. Gale,” I say as she brings me into her office. “Hello, Mrs. Whiffen,” she says with her big genuine smile. “Please sit down.”
“Leeann,” Dr. Gale begins, “Clay is a charming boy and I believe the test results accurately reflect his current levels of neurocognitive and neurobehavioral functioning.” She takes out her notebook, “On the neurocognitive analysis,” she continues, “his subscale scores and core domain score consistently ranged from average to above average.”
I feel a rush of excitement. “Speech and language skills are consistently within normal limits. Vocal tone, pitch, prosody, and rhythm are adequate. Clay’s learning and memory skills were also within normal limits. He demonstrated an age-appropriate ability to shift and direct attention, and to filter extraneous stimuli to acquire information.”
“Clay’s memory domain and attention/executive function domain scores are in the average range.” As she continues speaking, I begin to feel as light as a dandelion seed blowing through the air. Each time she says “average or above average,” I want to jump up and do the victory dance.
“So, Mrs. Whiffen,” she pauses and smiles, “I am happy to tell you that Clay does not currently meet the DSM-V diagnostic criteria for a diagnosis on the autism spectrum. He is well below the cutoff for autism on the ADI-R (Autism Diagnostic Interview – Revised) and ADOS (Autism Diagnostic Observation Schedule) tests.”
“He does,” she continues, “demonstrate patterns of relative weakness across areas of social interaction, pragmatic language, interests, and behavior. However, none of Clay’s observed qualitative differences are significant to meet the criteria for a diagnosis of autism.”
“It is my professional opinion that Clay…could be considered a candidate for placement in a mainstream kindergarten classroom.
81% We make the twisty canyon drive home with the windows down and the radio up. “We’re free!” I shout above the roar of the wind. “We’re free!”
“Clay, we kept fighting, buddy. We never gave up. We did it!”
References:
Carlon, S., Carter, M., et al. (2014). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Developmental Physical Disability; 27:286-305.
Deisher, T. A., Doan, N.V., et al. (2015). Epidemiologic & Molecular Relationship between Vaccine Manufacture & Autism Spectrum Disorder Prevalence. Issues in Law & Medicine; Spring Vol. 30 (1), pgs. 47-79.
Knopf, A., (2015). MMR vs. Autism: A False Choice. Brown University Child & Adolescent Behavior Letter; Vol31, p.1-2.
Schaaf, R., Benevides, T., et al. (2014). An Intervention for Sensory Difficulties in Children with Autism; Journal of Autism Developmental Disorders; 44:1493–1506.
Staff Writer, CAR Autism Roadmap (2020). Evaluating CAMs for Treating Symptoms of ASD; Children’s Hospital of Philadelphia. Retrieved online from – https://www.research.chop.edu/car-autism-roadmap/
Thompson, T. (2012). Making Sense of Autism; Brookes Publishing; Baltimore, Maryland; Ch. 7.
Wong, M., Heriot, S. (2007). Vicarious Futurity in Autism & Childhood Dementia; Journal of Autism Developmental Disorders; 37:1833-1841.
Excerpts from the book – (8% indicates location in the Kindle version of the book, instead of page numbers).
8% Thomas the Train has taken over his mind. But he is especially fanatical about James, the red engine. He has several Thomas movies we rotate…I feel a pang of guilt each time I let him watch one, but sometimes it’s the only way I can get anything done. I think it’s probably just a phase.
9% Mom turns and watches Clay. “Leeann, he doesn’t seem to even notice we’re here.” I swallow. My throat sticks. I swallow again. I know he’s different.
< My Thoughts > "...Thomas the Train..."
It seems that Thomas and his friends appeal to kids with autism, especially. They have 'sensory' appeal with their large eyes, easy-to-read expressions. They have 'social' appeal with stories of trains that get along, show teamwork, and friendship. Sounds of trains, train timetables, and train 'alikeness', and lines of trains, all seem to resonate with all ages of autism. Marketing of Thomas the Train allows for DVDs, toys, books, figurines, clothes, and much more.
9% It’s September and time for Clay’s fifteen-month well-child appointment. “You know, he used to call me ‘Mama,’ and he doesn’t do that anymore.” “Boys usually don’t pick up language as quickly as girls. He’ll catch up,” he reassured me. “Okay then, it looks like he’s due for his MMR vaccination…”
“That is something else I want to talk to you about.” We are very concerned about giving our son this vaccination, especially since we have a relative who was diagnosed with autism at age three and a half.” I unfold the piece of paper with an article by Dr. Andrew Wakefield who claimed to find Measles Virus in the guts of autistic children.
I handed him the article…I watch his eyes move through the article. “You’ve been misinformed…parents are being deceived into thing vaccinations are causing autism. This is simply not true. Clay is much more likely to get smallpox than autism,” he says, wheeling his stool closer and pointing his finger.
I feel trapped. I weigh my options. “It is important that we vaccinate him,” I finally admit. Clay’s face scrunches up and turns red as the needle slides into his upper thigh. He screams as big tears fall down his face.
Deisher, T. A., Doan, N.V. , et al. (2015) discuss the decision making process this way. In order to prove cause and effect –
- The cause must occur before the effect
- Removal of the cause must result in removal of the effect
- Reintroduction of the cause must reintroduce the effect
< My Thoughts > "...He’ll catch up..."
Was the child meeting all of his or her developmental milestones BEFORE the vaccine? Denial is our worst enemy. I do think though, that doctors could give ‘vaccinations’ on a conservative timeline. Let the tot’s immune system recover between each dose.
16% Finally home, I hurry to the den and turn on the computer. I place my fingers on the keyboard and type “AUTISM”. My pinky finger hangs over the Enter key. My fear has a definition. I am afraid of what I might find.
Note: For further information on ‘Checklists’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 1 – How Will I Know It’s Autism? Chapter 1 Checklists, Chapter 2 Red Flags.
17% That evening, I go to bed unable to sleep, I go back downstairs. I force myself to look at the “Signs & Symptoms” checklist.
- Inappropriate laughing and giggling. CHECK!
- No real fear of danger . CHECK!
- Apparent insensitivity to pain. CHECK!
- May not want cuddling or act cuddly. CHECK!
- Little or no eye contact. CHECK!
- Difficulty expressing needs. CHECK!
- Not responsive to verbal cues. CHECK!
- Sustains odd play. CHECK! CHECK! CHECK!
- Inappropriate attachment to objects. CHECK!
- Insistence on sameness; resists change in routine. CHECK!
My eyes filled with tears as I looked at this description of my son on the computer.
Sifting through the masses of research could take years. After reading, I focus on the conclusions.
< My Thoughts > "...masses of research..."
“Sifting through the masses of research could take years.” Exactly why there is my Free ASD Book available here on this website.
17% I find a Time magazine article, “The Secrets of Autism,” by Madeleine Nash. At the end of the article it says, “Paradoxically, the very thing that is so terrible about autistic disorders – that they affect the very young – also suggests reason for hope.
Since the neural connections of a child’s brain are established through experience, well-targeted mental exercises have the potential to make a difference.” Another thing which catches my attention is that they say that early diagnosis has become increasingly important.
I discover that I don’t even have months.
< My Thoughts > "...I don’t even have months."
Early diagnosis allows for early intervention. Early intervention can save heartache and headaches. But, finding and prioritizing the appropriate intervention takes time and critical thinking. Most of all, it takes knowing your child, your family, and yourself.
Carlon, S., Carter, M., et al. (2014) tell us that 75 parents were surveyed to determine the decision-making process considered when choosing the type of intervention for their child. The survey revealed that parents thought their child’s individual needs were the first priority, followed by their ‘gut-feeling’ determined by having realistic goals for him or her. These became their guide, as opposed to a smooth sales-pitch, or someone else’s experience (because each child expresses autism differently).
The most popular interventions considered in this recent study were –
- ABA Applied Behavior Analysis & ABI Applied Behavior Intervention
- OT Occupational Therapy & ST Speech Therapy
- RDI Relationship Development Intervention® is a family-based, behavioral treatment designed to address autism’s core symptoms.
- CAM Complementary & Alternative Medicine
Note: For further information on ‘ABA’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7-1 – Who May Help? Other Therapies, Section 1: 1. ABA, 2. CBT, 3.DIR/Floortime, 4. OT, 5. PECS. UNIT 7- 4 – Who May Help? Section 4: CAMs.
16% My husband Sean says, “Maybe we should obtain a professional diagnosis.”
17% The next morning I call the office of Dr. Sam Coates, a pediatric psychiatrist, 20 miles south of us and schedule an appointment for an evaluation.
There are those extremely rare moments in which I catch a glimpse of the little boy who is hiding inside the farthest corner of a hollow shell…
My instinct as a mother tells me he’s in there. But, he’s falling deeper into oblivion as time goes on – further from my reach.
< My Thoughts > “...he’s in there…”
Yes, there are those moments with Sonny when he makes eye contact for a moment. In that moment, there is a connection. A connection that says, yes, I'm in here.
Wong, M., Heriot, S. (2007) know that the parents they have encountered mostly “maintain a hopeful outlook for their child’s future. This attitude enables them to pursue treatment options and cope with the day-to-day challenges and stress involved. They say that mothers especially, hold a sense of reaching the child and accepting the diagnosis, at the same time. The study they reviewed showed that even if the parents’ optimism was unrealistic, they continued to hold an overall hopeful view of the future for their child.
24% Dr. Coates tells us, “You are fortunate to have caught this at such a young age.”
25% “I feel venerable. Now it’s real. There’s no more hiding behind ignorance or denial…”
A 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…
28% “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. I’ve heard about a Dr. Jepson… maybe he can help Clay.
35% We play with Clay in the waiting room until the nurse calls us back. Dr. Jepson stands to shake our hands and says hi to Clay as he pats him on the back. I’m taken back by how young he looks. He begins by walking us through the biomedical approach to 'autism' using a PowerPoint presentation on his laptop.
36% Dr. Jepson’s Power Point Presentation –
Autism is a complex metabolic disorder that involves multiple body systems:
- Neurological
- Toxicological
- Immunological
It begins with genetic susceptibility coupled with an environmental insult of one kind or another.
This sets off a chain of events resulting in the dysfunction of the four organ systems.
Treatments often include –
- Diet
- Nutritional supplementation
- Detoxification
The latest research shows there seems to be a problem in the interaction of several biochemical pathways involved in the detoxification cycle of the body.
Obviously not all children are autistic, so most infants can handle the toxic load of heavy metals in the environment.
However, those children with the right genetic mix or predisposition are adversely affected.
< My Thoughts > "...genetic mix or predisposition..."
The reason a child is born with 'autism' is still unknown. A complex genetic mix or predisposition may be part of the cause, along with many other yet to be determined factors. But there seems to be no dominant nor recessive genetic influences, as there are with eye color.
Staff Writer, CAR Autism Roadmap (2020) tells us that unfortunately, CAMs are NOT ‘evidence-based’ treatments. ‘Evidence-based’ treatments have undergone rigorous scientific testing and proven to be effective for the specific conditions or populations they are intended for. CAMs are often considered by parents because they believe them to be ‘low risk’ interventions. Parents are influenced by anecdotal evidence, such as what has worked for a friend’s child.
< My Thoughts > "...worked for a friend’s child."
This is a flawed concept, and may be dangerous or even deadly. CAMs should only be considered on the advice of you child’s physician. Your pediatrician can refer you to the treatments they may feel helpful. Always consult a physician before stopping or starting any interventions. It takes a ‘team’ approach to alleviate autism symptoms. Along with diligence and constant follow-up.
Carlon, S., Carter, M., et al. (2014) say some people may feel that parents need to be supported in their choice of treatments for their children. However, it is important that CAM’s are not used as a substitute for conventional medicine in any patients; especially those with severe conditions.
A few of the CAM’s used by people in hopes of lessening the symptoms of autism are treatments such as:
- Specialized diets & supplements (gluten/casein-free diet, yeast-free diet)
- Mind & body practices (acupressure, biofeedback, massage, sensory integration therapy)
- Unconventional approaches (aromatherapy, homeopathy, pet therapy)
This study says that parents are also cautioned by physicians that if they want to investigate CAM’s, to try ‘gentle’ treatments and to absolutely avoid invasive, unproven and potentially harmful ones. Many professionals feel that CAM’s are money traps for gullible and desperate parents. Because they know how drugs and diet interact with one another, I believe that your family doctors and specialists should always be consulted before introducing any new procedures, plans or programs.
Note: For further information on ‘investigate CAM’s’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7- 0 – Who May Help? Other Therapies, UNIT 7– 1 CAMs, through UNIT 7– 11 CAMs.
37% A combination of insults on a fragile immune system. “Because of their diminished immune system function many children more prone to ear infections, eczema, and sinusitis. Most of the time antibiotics again are prescribed to treat these illnesses, further exacerbating the problem.”
Dr. Jepson recommends some lab tests, including a hair analysis, urine organics acids test, Complete Blood Count (CBC), RBC minerals (measures nutrient mineral levels vs toxic mineral levels), liver panel, and a thyroid function test. He also recommends placing Clay on a strict gluten- (wheat) and casein (milk) free diet. In addition, there are supplements he recommends for Clay.
“Sean,” I say on the way home, “one of my biggest concerns is that there haven’t been any ‘gold standard’ studies proving the triggers he mentioned are the culprits.”
< My Thoughts > “...‘gold standard’ studies”
Clinical research refers to ‘gold standard’ studies as studies which have established a high level of rigor and reliability in their findings. They are methods which have undergone rigorous safety and efficacy testing, and close supervision by respected health experts.
Schaaf, R., Benevides, T., et al. (2014) believe that in terms of interventions, anything that “…has good reliability and validity as an outcome measure for functional behaviors is likely to improve the child’s ability to regulate behavior and learn functional skills. They go on to say that, children with ASD have to ‘learn’ the best ways for them to begin ‘processing and integrating sensory information’, appropriately.
76% I received an email from my Yahoo! Group regarding this new treatment called RDI. At first I blew it off as being the new treatment choice of the month, but as I started researching it further, I was really impressed with how it addresses the core deficits of autism.
I recently finished reading the book Relationship Developmental Intervention (RDI) with Young Children by Steven Gutstein. …I was floored at this new way of teaching our kids. It really makes sense.
There are additional activities you can do to reinforce it. It helps them learn nonverbal communication, social referencing, and to be more vigilant in their environment. I want Clay to not only be able to function in real life, but also have relationships and friends. Isn’t that really what life is all about? We need each other to enhance our quality of life.
Gutstein, S. & Greenspan, S. (2019) give us the basics of Relationship Development Intervention® (RDI), developed by psychologist Steven Gutstein. RDI is a family-based, behavioral treatment designed to address autism’s core symptoms. Developed to build on one’s ‘dynamic intelligence’, defined as the ability to think flexibly. Including integrating different incoming sensory information, appreciating different perspectives, and coping with change.
Note: For further information on ‘RDI’ go to MENU for Know Autism, Know Your Child with < My Thoughts > by Sara Luker. Read online here, under UNIT 7 – 2 Other Therapies, Section 2: RDI.
78% At our next team meeting, I pose a question – “What are Clay’s deficits?”
“It seems Clay still has a hard time with attention span, focusing, and impulsivity,” one member says.
Another adds, “He also doesn’t seem to contribute when in group activities unless specifically asked or singled out.
“I think RDI will help with all of these issues,” I say. “Now we know what we need to work on with him. I think RDI will fill in the holes we are seeing.”
82% The RDI activities dovetail our existing program by reinforcing what we are already teaching him, but also emphasize experience sharing in a relationship…teach him inhibitory control by stopping when I stop, starting when I start…
Everyone is amazed at how his language and expressions have really blossomed over the last six months. Still, I need to know exactly how he is doing in terms of IQ, social skills, and language. I want him evaluated by a professional…someone who doesn’t know him.
80% It’s almost two years since Clay’s diagnosis. I arrive at Dr. Gale’s office early. I take a deep breath before opening the door. “Hi, Dr. Gale,” I say as she brings me into her office. “Hello, Mrs. Whiffen,” she says with her big genuine smile. “Please sit down.”
“Leeann,” Dr. Gale begins, “Clay is a charming boy and I believe the test results accurately reflect his current levels of neurocognitive and neurobehavioral functioning.” She takes out her notebook, “On the neurocognitive analysis,” she continues, “his subscale scores and core domain score consistently ranged from average to above average.”
I feel a rush of excitement. “Speech and language skills are consistently within normal limits. Vocal tone, pitch, prosody, and rhythm are adequate. Clay’s learning and memory skills were also within normal limits. He demonstrated an age-appropriate ability to shift and direct attention, and to filter extraneous stimuli to acquire information.”
“Clay’s memory domain and attention/executive function domain scores are in the average range.” As she continues speaking, I begin to feel as light as a dandelion seed blowing through the air. Each time she says “average or above average,” I want to jump up and do the victory dance.
“So, Mrs. Whiffen,” she pauses and smiles, “I am happy to tell you that Clay does not currently meet the DSM-V diagnostic criteria for a diagnosis on the autism spectrum. He is well below the cutoff for autism on the ADI-R (Autism Diagnostic Interview – Revised) and ADOS (Autism Diagnostic Observation Schedule) tests.”
“He does,” she continues, “demonstrate patterns of relative weakness across areas of social interaction, pragmatic language, interests, and behavior. However, none of Clay’s observed qualitative differences are significant to meet the criteria for a diagnosis of autism.”
“It is my professional opinion that Clay…could be considered a candidate for placement in a mainstream kindergarten classroom.
81% We make the twisty canyon drive home with the windows down and the radio up. “We’re free!” I shout above the roar of the wind. “We’re free!”
“Clay, we kept fighting, buddy. We never gave up. We did it!”
References:
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Deisher, T. A., Doan, N.V., et al. (2015). Epidemiologic & Molecular Relationship between Vaccine Manufacture & Autism Spectrum Disorder Prevalence. Issues in Law & Medicine; Spring Vol. 30 (1), pgs. 47-79.
Knopf, A., (2015). MMR vs. Autism: A False Choice. Brown University Child & Adolescent Behavior Letter; Vol31, p.1-2.
Schaaf, R., Benevides, T., et al. (2014). An Intervention for Sensory Difficulties in Children with Autism; Journal of Autism Developmental Disorders; 44:1493–1506.
Staff Writer, CAR Autism Roadmap (2020). Evaluating CAMs for Treating Symptoms of ASD; Children’s Hospital of Philadelphia. Retrieved online from – https://www.research.chop.edu/car-autism-roadmap/
Thompson, T. (2012). Making Sense of Autism; Brookes Publishing; Baltimore, Maryland; Ch. 7.
Wong, M., Heriot, S. (2007). Vicarious Futurity in Autism & Childhood Dementia; Journal of Autism Developmental Disorders; 37:1833-1841.
