DAY TWENTY-TWO
What is the most concerning or destructive thing that is going on right now in your child’s world? Where to look for HELP?
Note: Luker, S. (2024). Read more about CAMs in UNIT 7 – 3 OTHER PROGRAMS, THERAPIES, APPROACHES: MEDICATION & DIETARY APPROACH Section 3: CAMs
When trying to get to know the child behind the autism, understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Prioritize your child’s concerning behavior. Is s/he refusing to eat to the degree that it is becoming life threatening? Is s/he biting you, screaming and kicking in walls? Tantrumming, having meltdowns and causing self-abuse? Is s/he a constant danger to his or herself or others? Is s/he repeatedly doing strange purposeless things? If any of these are true, your child is asking for help the only way that he or she are able to. Learn about the strengths and current limitations of your child.
< My Thoughts > “…asking for help…”
The more desperately your child is asking for help, the more desperate you may become to start a therapy; traditional or non-traditional. Be cautious. Be aware of risky interventions. Some programs seem ‘traditional’, while they really are NOT. A few have gained the ‘traditional’ status, but really are NOT. Just because an insurance company agrees to pay for ‘it’, doesn’t make it ‘evidence-based’, ‘gold-standard’, or ‘traditional’. Refer to government websites and do your research and verify through reliable sources.
What is the most concerning or destructive thing that is going on right now in your child’s world? Where to look for HELP?
Note: Luker, S. (2024). Read more about CAMs in UNIT 7 – 3 OTHER PROGRAMS, THERAPIES, APPROACHES: MEDICATION & DIETARY APPROACH Section 3: CAMs
When trying to get to know the child behind the autism, understand that s/he may be showing symptoms of more than one problem, challenge, or disorder.
Prioritize your child’s concerning behavior. Is s/he refusing to eat to the degree that it is becoming life threatening? Is s/he biting you, screaming and kicking in walls? Tantrumming, having meltdowns and causing self-abuse? Is s/he a constant danger to his or herself or others? Is s/he repeatedly doing strange purposeless things? If any of these are true, your child is asking for help the only way that he or she are able to. Learn about the strengths and current limitations of your child.
< My Thoughts > “…asking for help…”
The more desperately your child is asking for help, the more desperate you may become to start a therapy; traditional or non-traditional. Be cautious. Be aware of risky interventions. Some programs seem ‘traditional’, while they really are NOT. A few have gained the ‘traditional’ status, but really are NOT. Just because an insurance company agrees to pay for ‘it’, doesn’t make it ‘evidence-based’, ‘gold-standard’, or ‘traditional’. Refer to government websites and do your research and verify through reliable sources.
The following programs, therapies & approaches are described without intent or suggestion of status or effectiveness –
MEDICATION –
Mitchell, S. (2015) 51% Mel continued. “It’s tough for kids who are nonverbal. They can’t tell us what they want or need, so we have to become keen detectives, watching their behavior and using trial and error.
60% “There is no pill that will make the autism all go away. Sometimes some kids are helped by some meds that allow the child to pay attention better or remain calmer so that they are better able to learn, but it is definitely not automatic that if a child has autism, he will take medication.”
< My Thoughts > “There is no pill…”
Behavioral interventions have been proven effective and usually approved by most insurance, including Medicaid, medications for autism is another story; especially for older children.
Williamson, E. & Martin, A. (2012) designate three main clusters of conditions which have widely prescribed medications: irritability; (ADHD) Attention Deficit Hyperactivity Disorder-like symptoms, and repetitive behaviors. A cautionary tale, these medications have not been studied for the treatment of autism. They do not treat the underlying disorder of autism, and do have prominent negative, as well as positive side effects. Also important would be that parents see to regular monitoring of vital signs and laboratory tests, appropriate attention to diet and lifestyle changes. They add the comment that while two decades ago, autism was considered to be a result of dysfunctional parenting, now autism is treated as a neurodevelopmental disorder.
< My Thoughts > … What you may find under MEDICATION is that there are no specific medications for ASD, only medications to treat related symptoms such as energy levels, inability to focus, depression, and/or seizures. Most often these are costly ‘substance controlled’ drugs which need extremely careful monitoring for dosage and side effects.
Colson, E. & Colson, C. (2010) can tell you that drugs were not without a price. One night, desperate for sleep, I took refuge on the couch downstairs. I awoke to find that it was unusually quiet upstairs. I found Max under his comforter, balled up and shaking, staring up at me wild-eyed. I called the doctor and he immediately took Max off the new medication.
< My Thoughts > “…unusually quiet upstairs…”
Keeping a vigilant eye on Sonny was so necessary, during introduction of new meds. Or, when titrating meds to a therapeutic dosage; or withdrawing meds which were not working; watchfulness was so necessary. We even took shifts staying near him.
Bodfish, J. (2004) bids parents to look to successful interventions for overt behavioral symptoms. Stereotypes such as hand flapping, body rocking, object spinning, obsessing on restricted interests, and poor response to novel or new interests.
Finally, he cautions that interventions cannot be successful when operating in a vacuum. And, that parents shouldn’t be led into the false dichotomy of ‘pills’ without ’skills’, never one without the other.
< My Thoughts > “…false dichotomy…”
Parents shouldn’t be led into the false dichotomy of ‘pills’ without ’skills’, never one without the other. They may be suggesting here, that medicating the child with autism, could help initially to prevent dangerous behavior.
But eventually, the expectation would be that the medication should be used as a ‘support’ to ease the child into learning a ‘coping’ or therapy skill. That the daily medication treatment plan will be adjusted, as the coping skills improved, through therapy. Or, allow a medication to be given intermittently, for flare-ups, or short-term events; or, as suggested by the prescribing physician. Know also that seeing ‘normal’ behavior may be rare.
DIETARY APPROACH
Marshall, J., Ware, R., et al. (2014) remind us that feeding and eating difficulties can lead to dangerous weight loss, malnutrition, iron deficiencies, anemia, gastrointestinal issues, and failure to thrive. The current literature suggests that successful interventions for children with ASD and feeding difficulties is limited. One reason seems to be the ‘mismatch’ between the intent of the intervention and the actual outcome. In other words, the conclusions are unclear. As a result of the intervention, has the mealtime behavior changed? Or has there been a decrease in the child’s food selectivity? Or has the child’s food intake volume increased? These questions were left unanswered.
< My Thoughts > “…conclusions are unclear.”
Because of the above confusing conclusions, my intent is to tackle both feeding/eating behaviors, food selectivity concerns, and problems with dangerously fluctuating food intake volume. Be aware also, that doctors often find inserting a ‘feeding tube’ to be the quickest way to solve this ‘refusal to eat’ problem; while others see it as a last resort. You may want to seek a second opinion, if you are unclear about your options.
Mari-Bauset, S., Zazpe, I., et al. (2014) tell us straight away that – Few studies can be regarded as providing sound scientific evidence about dietary changes and autism. They recommend that a child’s diet should only be changed after the diagnosis of a food intolerance; or, an allergy to foods containing the allergens excluded in gluten-free, casein-free diets.
The Food & Drug Administration (FDA) and the International Food Information Council (IFIC) warn that along with medication ‘side effects’, there can be foods that your child loves, which also may be harmful. Thus, due to food ingredients, additives, and/or coloring. Most producers of food and consumers today, rely on additives to provide a variety of useful functions. Because we don’t grow our own food locally, additives keep the food sent from’ far away places’, edible weeks later.
< My Thoughts > “…which also may be harmful…”
The DIETARY APPROACH here is considered a ‘therapy’, and is about a diet, as the food being eaten; plus, adding supplemental ‘probiotics’ to the daily diet.
This is NOT to be confused with a ‘SENSORY DIET’ therapy, which is developed by an Occupational or Physical Therapist to help a child cope with ‘sensory’ intrusions. Extreme disturbances, such as the child who is bothered by being touched; is upset by the room temperature, or by wearing scratchy clothing.
Gardner, N. (2008) 8% Mealtimes were another challenge. Dale was rarely hungry and in order to get him to eat at all, I tried to arrange the food in the shape of cars or Mickey Mouse or serve it on novelty plates.
< My Thoughts > “Dale was rarely hungry…”
There are all kinds of special diets for special kids. Maybe the child doesn’t like the look, feel, smell, taste of the food. It could mean he/she has sensory issues with food. Then there are some medications which can affect the appetite, any food can distress them.
Siri, K. (2015) 3%/101 Treatments for GI issues have significantly benefited Alex and though still non-verbal, his behaviors, control and vocalizations have improved over the last two years of treatment for those GI issues.
32%/101 Experience has shown that most people on the autism spectrum will benefit from a diet that is strictly free of gluten and dairy; therefore, the removal of these should be considered the foundation for dietary interventions.
Additional changes are almost always needed for optimum improvement, but one size does not fit all. Every parent’s goal is to find the ideal foods that will provide maximum benefit without being unnecessarily restrictive.
Siri, K. (2010) 31%/1,001 Children with autism as a group have notoriously poor nutrition coupled with vitamin and mineral deficiencies. This may be due, in part; to extreme eating habits (they are notoriously picky). Deficiencies are also likely due to the above mentioned tendency toward malabsorption.
Sicile-Kira, C. (2014) says – As time goes by, you will find yourself less and less in the ‘bargaining’ mode. You will begin to have more acceptance of your child’s situation, personality, and potential. Carefully consider the options out there.
Celebrate the diet/therapy/medication which seems to be helping your child. But, know that there will still be days filled with anger and grief; and those days when you are filled with strength to accomplish great things. Look at your child and see the person, NOT the disability.
References:
Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet; Mental Retardation & Developmental Disabilities Research Reviews; Chapel Hill, NC V10:318-326.
Colson, E. & Colson, C. (2010). Dancing with Max: A Mother & Son Who Broke Free; eBook Edition.
Gardner, N. (2008). A Friend Like Henry: The Remarkable True Story of an Autistic Boy & the Dog that Unlocked His World; eBook Edition.
Luker, S. (2024); Know Autism, Know Your Child with < My Thoughts > by Sara Luker; Retrieved online from – www.sarasautismsite.com
Mari-Bauset, S., Zazpe, I., et al. (2014). Evidence of the Gluten-Free & Casein-Free Diet in autism Spectrum Disorders; Journal of Child Neurology; V29:12.
Marshall, J., Ware, R., et al. (2014). Efficacy if Interventions to Improve Feeding difficulties in children with ASD: A Systematic Review and Meta-analysis; Childcare, Health & Development, Australia; V41:2.
Mitchell, S. (2015). Autism Belongs, Book 3 in School Daze Book Series; eBook Edition.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Siri, K. (2010). Siri, K. (2010). 1,001 Tips for the Parents of Autistic Boys; Skyhorse Publishing, N.Y., N.Y.
Siri, K. (2015). 101 Tips for the Parents of Boys with Autism & 1,001 Tips for the Parents of Autistic Boys; eBook Edition.
Williamson, E. & Martin, A. (2012). Psychotropic Medications in Autism: Practical Considerations for Parents, Journal of Autism & Developmental Disorders; V42, p 1249-1255.
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’, ‘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.
End of DAY TWENTY-TWO.
Note: Excerpts from the books – (13% indicates location in the Kindle version of the eBook, instead of page numbers).
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Regards,
Sara Luker
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