by Leeann Whiffen, eBook 2009 Edition; an Extended Review with < My Thoughts > by Sara Luker
(8% indicates location in the Kindle version of the book, instead of page numbers.)
Excerpts from Leeann’s book, with < My Thoughts > by Sara Luker
8% Thomas the Tank Engine 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 > Why Thomas the Tank?
“Children with autism are often attracted to objects arranged in lines,” such as cars and trains. Some parents report first words as being an echoing of lines from the DVD. “Stop, the signal is up!” “Apply the brakes!” Echolalia is common in children with autism.
Retrieved from – http://www.myfavoritetoy.com/autism_thomas.htm1
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 and…”
“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. I don’t know what the truth is or how to find it. A few days later, Clay breaks out into a rash, accompanied by a low-grade fever. Pencil head-sized red bumps dot his torso. “If the fever persists, bring him in. Otherwise, he should be fine.” “He doesn’t seem fine,” I whisper.
“Concerned parents have avoided vaccination which has led to a resurgence of disease.” The review MMR vs. Autism (2015) cautions that if you make the wrong choice… your child could have both autism and a deadly disease. According to the Mayo Clinic there is “no reliable study which has shown a link between (ASD) Autism Spectrum Disorder and the MMR (Measles, Mumps, & Rubella viral diseases MMR vaccine) vaccine.”
Retrieved from - http://www.mayoclinic.org/diseases-conditions/autism-spectrum-disorder/basics/causes/con-20021148
When making that decision, Deisher, 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
Where this becomes tricky, in my thoughts, is whether or not there is a clear picture of the child’s developmental progress. 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 ‘shots’ on a conservative timeline. Let the tot’s immune system recover between each dose. Does that seem reasonable?
11% As we get to the park, I unbuckle Clay from the stroller, holding onto one of his arms. He manages to jerk free and runs full speed toward the road. He darts in front of a car, narrowly beating the front bumper. I sprint after him.
< My Thoughts > “I sprint after him.”
Thompson (2012), comments that among the most challenging behaviors of children with autism is that of dashing out in all directions in order to escape, avoid, or just for the adrenaline rush of running. This is where I would be yelling in my best ‘Thomas’ voice…“Stop, the signal is up!”
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.
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 > “Sifting through the masses of research could take years…” My thoughts exactly!
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 > Early diagnosis allows for early intervention…
Carlon, 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
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 > “My instinct as a mother tells me he’s in there…”
Wong & Heriot (2007) know that 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 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 –
- Nutritional supplementation
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 > 17% This is where CAM Complementary & Alternative Medicine, as referred to in the article by Carlon, et al. (2014), enters the picture. Here, I just wanted to add a little more information about CAM’s.
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)
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.”
I look at Dr. Jepson in disbelief. “Are you telling me Clay’s autism could have been a result of any or a combination of his vaccines, multiple rounds of antibiotics, extreme constipation alternating with diarrhea, ear infections, red cheeks, ears, and nose?”
“Yes,” he says. “The evidence suggests that this could be a piece to the puzzle.” “You may want to consider attending the Defeat Autism Now! (DAN!) conferences… where experts from all over the world come and share their research and clinical experience with professionals and parents.”
He 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 > “there haven’t been any ‘gold standard’ studies”
Schaaf, et al. (2014) believe that in terms of interventions, anything that “…have 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.
38% “On the other hand, what if they’re right?” Sean was quiet for a moment. “I agree with you. I think we need to do everything we can to help Clay and have no regrets. Our son has been kidnapped. Taken by autism. The kidnappers are asking a hefty ransom and there are no guarantees we’ll get him back.” Later that evening, I read the boys a book of nursery rhymes while they’re in the bath. I look at Clay. The tips of his ears, cheeks, and nose are bright red. I feel the water…it’s cool to the touch.
Do we pay the ransom? You bet we do. We will do anything to save our son.
44% Eight weeks into the special diet, I wake up one morning and look over at the clock – 6:30 a.m. My heart starts to race, thumping in my throat. I lean over and whisper, “Sean, did you hear Clay wake up last night?” “No, did you?” “No,” I say, almost out of breath. I race to Clay’s room. I lightly press my face against the small crack in his door. I can see him sleeping on his stomach, his back slightly rising and falling as he breathes. This is the first time Clay has ever slept through the night. Ever! Maybe it’s a fluke.
Evening means supplements, and over two months later it’s still a fight to get Clay to take them. We lay Clay down and he starts to scream, I’m just about to squirt the vitamins into his mouth when he shouts what sounds like, “Buzz!” “Did you hear that? Did he just say ‘Buzz’?” I say to Sean. I follow Clay’s eyes to where he is looking, and there I see his Buzz Lightyear toy. I give it to him to hold as I tickle him and wrestle with him on the floor.
73% Trisha walks through the front door smiling. She and Clay are back from a generalization session, in which they take what he has learned inside our house and generalize it to the community. “Clay was amazing today!” she says. “He was naturally motivated, seeking to please me constantly. …I was amazed at the intensity with which Clay listened.”
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.
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…
< My Thoughts > Enter RDI, as referred to in the article by Carlon, et al. (2014).
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!”
End of excerpts from Leeann’s book, with < My Thoughts > by Sara Luker
REFERENCES used in < My Thoughts > by Sara Luker
Carlon, S., Carter, M., Stephenson, J. (2014). Decision-Making Regarding Early Intervention by Parents of Children with Autism Spectrum Disorder; Journal of Developmental Physical Disability; 27:286-305.
Knopf, A., (2015). MMR vs. Autism: A False Choice. Brown University Child & Adolescent Behavior Letter; Vol31, p.1-2.
Schaaf, R., Benevides, T., Mailloux, Z., Faller, P., Hunt, J. et al. (2014). An Intervention for Sensory Difficulties in Children with Autism; Journal of Autism Developmental Disorders; 44:1493–1506.
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.