UNIT 7 – 1 OTHER PROGRAMS, THERAPIES, APPROACHES
UNIT 7-1 CAMs
SECTION 1: MEDICATION & DIETARY APPROACH
PLEASE READ DISCLAIMER –
INTRODUCTION: (UNIT 7-1, Section 1) OTHER THERAPIES –
MEDICATION & DIETARY APPROACH
Askin & Moore (2019) make known that more than 1/3 of Americans regularly use Complementary & Alternative Medicine (CAMs) along with conventional medicine, or sometimes in place of conventional medicine. These non-traditional CAMs may include natural products, acupuncture, and homeopathic care; to name a few. Some insurance plans provide reimbursement, but the majority of plans do not; so, parents must pay ‘out-of-pocket’ for these services which are not covered. The federal government has established a National Center for CAMs to study this field.
< My Thoughts > “…National Center for CAMs…”
One such informational government website, Complementary, Alternative and Integrative Health Terms and Fact Sheet, can be found online – https://www.nccih.nih.gov/health/complementary/
Rudy (2020) regards the best autism spectrum therapy decisions for children and adults are those which challenge and interest that person. Important too would be the availability, cost and appropriateness of the therapy.
She reminds us that only a few therapies are provided through schools, or paid for through medical insurance. Sometimes parents can afford to do a combination of both. And, she cautions that there are therapies to avoid; such as those which may sound effective but are useless and risky. Rudy’s Very Well Magazine Editor comments, “Rely on proven research, not on personal or online testimonials.”
< My Thoughts > “…there are therapies to avoid…”
Whether traditional or non-traditional, matching a ‘proven’ therapy to a child’s undesirable or dangerous autism characteristics, can be very difficult. Also, children with a combination of issues may need a combination of therapies, programs, and/or interventions.
Knowing your child, your child’s autism, and knowing yourself can help you make these choices. Every child is so different and every parent is, too. Knowing what may work for the child, and also work for you and your family, is important to finding success, over time. Also, be aware of those risky therapies to avoid. And, always strive to keep things ‘symptom appropriate’, and ‘age appropriate’, for your child.
Sicile-Kira (2014) says your child may share a common diagnosis or label with a peer, but that does NOT mean the children have the same treatment needs. Remember that you know more about your child than the experts. Know that ‘autism’ has become ‘big business’ and there are some unscrupulous individuals out there trying to ‘sell’ their product. And, perhaps your child will be shaped by the treatment, but will they stabilize temporarily, only to regress when the treatment is stopped?
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.
All therapies cost money. You may need funds to supplement your costs. Find out what may be free, in the educational, social service, and health system available to you. If you have private insurance, find out what it will cover. See if there is a financial support somewhere, for which you may become eligible.
Do NOT just suppose that these services will automatically help you. Learn to ask the ‘right’ questions. Each agency has a brochure explaining clients’ rights and lists of advocates. At the same time, you will be asked to fill out a questionnaire about your child. Learn how to answer questions in a way that fully explains your situation.
< My Thoughts > “…answer questions in a way that fully explains…”
The way parents answer questions on questionnaires can determine the success or failure of how a therapy ‘fits’ your child’s symptom characteristics. For instance, how does your child –
Sonny has super-sonic hearing and strength. He is an escape artist and does NOT like to be still. He will out run you and out maneuver you, if he is determined to do so. He is non-verbal (vocal) and uses primitive ‘baby’ sign language; some signs known only to him. He will grunt, scream, or make guttural sounds for both joy and distress.
He has an unusual type of seizure, Lennox-Gastaut Syndrome; which causes his gait to change. He may suddenly drop down and possibly lose consciousness. Or, pop back up and look around and try to orient himself. When he becomes anxious, most sensory meltdowns can be headed off with soothing music, changing to lightweight clothing, and/or putting him in a cool room. Knowing these things will help the therapist guide the therapy.
Note: Visual Posters referenced in other Chapters.
Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered that there was a huge gap in receiving intervention, and disparity between the way ‘white’ children are being treated, and the treatment of ‘ethnic others’.
Among the reasons they gave, was the family’s lack of access to traditional medical services, or health care providers. Another was that pediatricians were still NOT completely familiar with early autism identification and referral practices. As well as, the lack of health insurance, in spite of the Individuals with Disabilities Education Act (IDEA) Part C, which states that the families are to receive services, regardless of their ability to pay.
< My Thoughts > “…lack of access to traditional medical services…”
Often, when parents become frustrated trying to obtain traditional medical services, or when things aren’t moving
fast enough, families will seek out something non-traditional instead. Or, sometimes they will use a combination of both traditional and non-traditional.
Staff Writer (2019) speaks of other healthcare disparities, which can be seen by many African American parents whose children have autism. These parents, must be persistent in getting their health care provider to listen and to act upon their concerns. By law, all children with autism are expected to have access to a better prognosis, with early diagnosis and early intervention.
There are clear disparities in health, and disparities in educational opportunities for many families finding themselves to be ‘marginalized’ ethnic groups. This is in spite of the fact that the 1975 federal law Free and Appropriate Public Education (FAPE), requires states to provide a free and appropriate education to all students with disabilities. However, children in some racial/ethnic groups have been denied, or identified for services in disproportionate numbers.
Carlon (2014) found that parents often made decisions about choosing Interventions by ‘gut-feelings’, or they didn’t consider a therapy because they were unaware of its efficacy. Some parents had difficulty searching out reliable information about evidence-based practices. Others had problems comparing the effectiveness of programs with one another.
< My Thoughts > “…difficulty searching out reliable information.”
Other barriers to choosing an intervention for children can be finding programs eligible for insurance payment, supplement, or reimbursement. Most evidence-based reliable interventions are very expensive. Public schools offer some interventions by qualified therapists, when the child has proper diagnosis, age, and other possible qualifications.
Carlon considers that how specifically the intervention actually conforms with the child’s needs is often overshadowed by parents hearing anecdotal evidence of others whose child may or may not have the same diagnosis or needs as their child. Other influences the authors discussed were how parents felt about the autism diagnosis, itself; as to how it was reflected in their cultural, or religious beliefs.
Further influences found as to the cause of their child’s autism, were parental educational levels, ability to and interest in, researching the program thoroughly; as to certification and qualification of staff members. There was also mention of parents seldom receiving recommendations by service providers and/or clinicians.
< My Thoughts > “…Further influences…”
One of the greatest parental ‘choice’ influences when finding an intervention seems to be dependent upon the impact of the child’s symptoms, on the family’s overall functioning.
Remember, before looking for a program – Prioritize your child’s ‘needs’ – Prioritize your ‘wants’ and ‘needs’. (Only consider programs which are reasonable.)
In other words…
What are the most frightening
or destructive things going on
with your child?
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.
There are many places you can begin the search to find funding for your child’s symptom evaluation and assessment. If one or both of the parents has been in the military, you may find funds there. Other sources of payment are of course insurance companies with a provision in extended coverage. Once your child is Preschool age, there may be programs available by school districts. Schools usually have Speech & Occupational Therapists, available, or on staff.
You may even look into nearby states where they may have more resources and maybe shorter waiting lists. Call your State Attorney General’s office to request help. But first, check with programs in your area and see if they can give you a contact person or organization that will help you. Ask any children’s charities and foundations in your area and beyond. Empty all pockets. Finding funding alone can be a full-time job. Get friends and family to help make contacts to their affiliations.
Note: More about funding approval in UNIT 6 Ch 2, INSURANCE.
According to the Centers for Disease Control & Prevention (CDC) website, https://www.cdc.gov/ncbddd/autism/treatment.html
some treatment programs for children with Autism Spectrum Disorder address the following:
UNIT 7-1 CAMs
SECTION 1: MEDICATION & DIETARY APPROACH
PLEASE READ DISCLAIMER –
INTRODUCTION: (UNIT 7-1, Section 1) OTHER THERAPIES –
MEDICATION & DIETARY APPROACH
Askin & Moore (2019) make known that more than 1/3 of Americans regularly use Complementary & Alternative Medicine (CAMs) along with conventional medicine, or sometimes in place of conventional medicine. These non-traditional CAMs may include natural products, acupuncture, and homeopathic care; to name a few. Some insurance plans provide reimbursement, but the majority of plans do not; so, parents must pay ‘out-of-pocket’ for these services which are not covered. The federal government has established a National Center for CAMs to study this field.
< My Thoughts > “…National Center for CAMs…”
One such informational government website, Complementary, Alternative and Integrative Health Terms and Fact Sheet, can be found online – https://www.nccih.nih.gov/health/complementary/
Rudy (2020) regards the best autism spectrum therapy decisions for children and adults are those which challenge and interest that person. Important too would be the availability, cost and appropriateness of the therapy.
She reminds us that only a few therapies are provided through schools, or paid for through medical insurance. Sometimes parents can afford to do a combination of both. And, she cautions that there are therapies to avoid; such as those which may sound effective but are useless and risky. Rudy’s Very Well Magazine Editor comments, “Rely on proven research, not on personal or online testimonials.”
< My Thoughts > “…there are therapies to avoid…”
Whether traditional or non-traditional, matching a ‘proven’ therapy to a child’s undesirable or dangerous autism characteristics, can be very difficult. Also, children with a combination of issues may need a combination of therapies, programs, and/or interventions.
Knowing your child, your child’s autism, and knowing yourself can help you make these choices. Every child is so different and every parent is, too. Knowing what may work for the child, and also work for you and your family, is important to finding success, over time. Also, be aware of those risky therapies to avoid. And, always strive to keep things ‘symptom appropriate’, and ‘age appropriate’, for your child.
Sicile-Kira (2014) says your child may share a common diagnosis or label with a peer, but that does NOT mean the children have the same treatment needs. Remember that you know more about your child than the experts. Know that ‘autism’ has become ‘big business’ and there are some unscrupulous individuals out there trying to ‘sell’ their product. And, perhaps your child will be shaped by the treatment, but will they stabilize temporarily, only to regress when the treatment is stopped?
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.
All therapies cost money. You may need funds to supplement your costs. Find out what may be free, in the educational, social service, and health system available to you. If you have private insurance, find out what it will cover. See if there is a financial support somewhere, for which you may become eligible.
Do NOT just suppose that these services will automatically help you. Learn to ask the ‘right’ questions. Each agency has a brochure explaining clients’ rights and lists of advocates. At the same time, you will be asked to fill out a questionnaire about your child. Learn how to answer questions in a way that fully explains your situation.
< My Thoughts > “…answer questions in a way that fully explains…”
The way parents answer questions on questionnaires can determine the success or failure of how a therapy ‘fits’ your child’s symptom characteristics. For instance, how does your child –
- Walk
- Talk
- Use self-help or self-comfort skills
- Show distress, anger, anxiety, etc.
- Experience dangerous events such as a seizure, sensory overload, etc.
- Respond to soothing music, Visual Posters, or cold rooms
Sonny has super-sonic hearing and strength. He is an escape artist and does NOT like to be still. He will out run you and out maneuver you, if he is determined to do so. He is non-verbal (vocal) and uses primitive ‘baby’ sign language; some signs known only to him. He will grunt, scream, or make guttural sounds for both joy and distress.
He has an unusual type of seizure, Lennox-Gastaut Syndrome; which causes his gait to change. He may suddenly drop down and possibly lose consciousness. Or, pop back up and look around and try to orient himself. When he becomes anxious, most sensory meltdowns can be headed off with soothing music, changing to lightweight clothing, and/or putting him in a cool room. Knowing these things will help the therapist guide the therapy.
Note: Visual Posters referenced in other Chapters.
Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered that there was a huge gap in receiving intervention, and disparity between the way ‘white’ children are being treated, and the treatment of ‘ethnic others’.
Among the reasons they gave, was the family’s lack of access to traditional medical services, or health care providers. Another was that pediatricians were still NOT completely familiar with early autism identification and referral practices. As well as, the lack of health insurance, in spite of the Individuals with Disabilities Education Act (IDEA) Part C, which states that the families are to receive services, regardless of their ability to pay.
< My Thoughts > “…lack of access to traditional medical services…”
Often, when parents become frustrated trying to obtain traditional medical services, or when things aren’t moving
fast enough, families will seek out something non-traditional instead. Or, sometimes they will use a combination of both traditional and non-traditional.
Staff Writer (2019) speaks of other healthcare disparities, which can be seen by many African American parents whose children have autism. These parents, must be persistent in getting their health care provider to listen and to act upon their concerns. By law, all children with autism are expected to have access to a better prognosis, with early diagnosis and early intervention.
There are clear disparities in health, and disparities in educational opportunities for many families finding themselves to be ‘marginalized’ ethnic groups. This is in spite of the fact that the 1975 federal law Free and Appropriate Public Education (FAPE), requires states to provide a free and appropriate education to all students with disabilities. However, children in some racial/ethnic groups have been denied, or identified for services in disproportionate numbers.
Carlon (2014) found that parents often made decisions about choosing Interventions by ‘gut-feelings’, or they didn’t consider a therapy because they were unaware of its efficacy. Some parents had difficulty searching out reliable information about evidence-based practices. Others had problems comparing the effectiveness of programs with one another.
< My Thoughts > “…difficulty searching out reliable information.”
Other barriers to choosing an intervention for children can be finding programs eligible for insurance payment, supplement, or reimbursement. Most evidence-based reliable interventions are very expensive. Public schools offer some interventions by qualified therapists, when the child has proper diagnosis, age, and other possible qualifications.
Carlon considers that how specifically the intervention actually conforms with the child’s needs is often overshadowed by parents hearing anecdotal evidence of others whose child may or may not have the same diagnosis or needs as their child. Other influences the authors discussed were how parents felt about the autism diagnosis, itself; as to how it was reflected in their cultural, or religious beliefs.
Further influences found as to the cause of their child’s autism, were parental educational levels, ability to and interest in, researching the program thoroughly; as to certification and qualification of staff members. There was also mention of parents seldom receiving recommendations by service providers and/or clinicians.
< My Thoughts > “…Further influences…”
One of the greatest parental ‘choice’ influences when finding an intervention seems to be dependent upon the impact of the child’s symptoms, on the family’s overall functioning.
Remember, before looking for a program – Prioritize your child’s ‘needs’ – Prioritize your ‘wants’ and ‘needs’. (Only consider programs which are reasonable.)
In other words…
What are the most frightening
or destructive things going on
with your child?
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.
There are many places you can begin the search to find funding for your child’s symptom evaluation and assessment. If one or both of the parents has been in the military, you may find funds there. Other sources of payment are of course insurance companies with a provision in extended coverage. Once your child is Preschool age, there may be programs available by school districts. Schools usually have Speech & Occupational Therapists, available, or on staff.
You may even look into nearby states where they may have more resources and maybe shorter waiting lists. Call your State Attorney General’s office to request help. But first, check with programs in your area and see if they can give you a contact person or organization that will help you. Ask any children’s charities and foundations in your area and beyond. Empty all pockets. Finding funding alone can be a full-time job. Get friends and family to help make contacts to their affiliations.
Note: More about funding approval in UNIT 6 Ch 2, INSURANCE.
According to the Centers for Disease Control & Prevention (CDC) website, https://www.cdc.gov/ncbddd/autism/treatment.html
some treatment programs for children with Autism Spectrum Disorder address the following:
- Medication
- Dietary Approaches
The following programs, therapies & approaches are described without intent or suggestion of status or effectiveness –
MEDICATION –
< 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.
Deb, et al. (2001) discuss a study where 100 participants, ages 16 – 64, considered to have an intellectual disability, were shown to have their severe behaviors reduced with the use of psychotropic medication. This challenging behavior was rated as severe and frequent. Many of the behavioral disorders on the list were also seen in persons with autism. They were –
- Aggression
- Destructiveness
- Self-injury
- Temper tantrums
- Overactivity
- Screaming/shouting
- Scattering/throwing objects
- Wandering
- Night-time disturbances
- Objectionable personal habits
- Antisocial behavior
The medications used were antipsychotics, antidepressants; along with anti-epileptic drugs, as 24 of the participants had epilepsy.
< My Thoughts > “…challenging behavior…”
Parents can expect that most doctors will prescribe a drug to reduce their child’s symptoms of irritability and/or aggression. The original intent of the physician is to get your child to a place emotionally where behavioral treatment can begin. Then after a ‘behavioral treatment’ is in place, learning can usually start.
Medications to treat the core symptoms of autism have ‘traditionally’ been required before entering into a therapy program. But, this in itself can contribute to more problems, due to physical and mental drug side-effects; plus disguising the true causes of behavior. Drugs can improve the quality of life for those with autism, if thorough assessments have been done.
For years, Sonny had been on a drug traditionally given to children with ‘behavior’ problems. When we tried to titrate him off the medication, it was clear that his body couldn’t function without it. He was addicted. Also, this was before he had a correct diagnosis of epilepsy. This activity, looked to everyone like tantrumming and meltdown behavior; when in fact, he was experiencing a seizure. This combination of events put him in danger, until we sorted it all out.
Barron (2011) believes – I failed at motherhood. I didn’t laugh anymore. I couldn’t remember what it was to have a conversation with another grown-up (other than my mother or my husband, Ron). The very notion had begun to frighten me.
I became absent minded, unable to finish anything I started. My son, Sean had become clearly jealous of his sister Megan. He invaded her room, ripped up her drawings, threw her toys out the window, dumped out her tinker toys and blocks. Why wouldn’t he be jealous? After all, she could do things he couldn’t do. She was praised, he was punished.
Eventually, we got another recommendation, Dr. Logan, a neurological pediatrician, one of only five in the country. The following day we were in his office. “Nothing had shown up on the EEG,” he said. “However, what we’ve got here, I’m afraid is a case of autism.” Autism? We had never heard the word before. “It’s a dysfunction of the brain,” he explained. “He was obviously born with it. No one knows what causes it or even what it is, really – and there is no cure as such. He could be very bright.”
So, it had a name. There was a medical reason for my son’s behavior. A hard kernel of pain inside my chest opened, and I was flooded with relief. Maybe it wasn’t me after all! “But what can we do?” Ron asked. “You need medication to calm him down so you can at least get through to him as much as possible,” Dr. Logan said.
< My Thoughts > “You need medication to calm him down…”
As related before, when Sonny was in foster care, in order to ‘calm him down’, the doctors prescribed a psychotropic drug to which he became addicted. Now, in order to treat the addiction, we had to give him a low dose synthetic version, plus other drugs to ease his withdrawal symptoms. Later, when he was diagnosed with a rarer form of epilepsy called Lennox-Gastaut Syndrome, that became the medication which had to come first. Eventually we were able to eliminate any drugs which may have caused a drug interaction with the drugs for epilepsy.
Rudy (2020) discusses ‘Medication’ as something that works well for some individuals while may not work, or may even be harmful for others. Medication, can reduce anxiety and improve focus, or even manage aggression. This requires close monitoring by the prescribing physician.
Schall (2002) “estimates that as many as 55% of individuals with autism use psychotropic medication.” She cautions that with “every medication one must balance risk of adverse side effects against the benefits it provides.” Parents are asked to consider the following things, before deciding on the medication, among them are –
- Define the ‘success’ of the treatment, because chances are that ‘normal functioning’ cannot be expected.
- Explain how the individual will ‘report’ their experience; especially if they cannot ‘self-report’ that a correct therapeutic dose has been achieved.
- Will the doctor agree to prescribe the ‘lowest possible dose’ for a trial period?
- Who will review the person’s clinical report and determine the effect on their ‘quality of life’ status?
The other things to consider are side-effects such as – weight loss/gain, insomnia, irritability, tics, lethargy, dizziness, diarrhea, constipation, and of course addiction.
< My Thoughts > “…other things to consider…”
Another ‘thing’ to consider is finding a ‘medication manager’. When Sonny’s medication became too much for me to keep track of; with side-effects, drug interactions, and drug allergies, we asked our family physician to recommend someone to help us. As it turned out, he was able to become our ‘medication manager’. This saved us hours on the phone trying to convince the insurance company that we needed to add yet another professional to our long list of providers.
Lenne & Waldby (2011) say that ASDs lack a biological marker, or set of pathology tests, to aid in the diagnosis process. Pediatricians cannot send blood samples to verify their intuition about a certain child’s autism. Even with the available observational diagnostic tests, symptoms of autism are difficult to categorize.
Diagnostic tests referred to in this study were:
- ADOS: autism diagnostic observation schedule
- CARS: childhood autism rating scale
- ADI-R: autism diagnostic interview-revised
These authors go on to say that pediatricians are faced with the complexities and inconsistencies of symptoms seen on the autism spectrum. And, those doctors would like to see themselves in the role of ‘facilitator’, helping parents after giving them the diagnosis. But doctors say, “In the ‘real-world’ we can only do the paperwork and refer them on to someone else.”
< My Thoughts > "...we can only do the paperwork and refer them on to someone else.”
This pretty much says it all…doesn’t it? Through no fault of their own, parents are once again set adrift to find the next lifeboat.
Floyd & McIntosh (2009) inform us that while behavioral and educational therapies are generally considered the most appropriate first-line interventions for individuals with ASD,
psychopharmacological intervention is often required. They found that over the past 10 years, antipsychotics, antidepressants and anti-epileptic drugs were used to treat the core features and associated symptoms of autism. The purpose for physicians subscribing these meds was to reduce the deficits in socialization, communication, repetitive behavior and maladaptive functioning in the child or adolescent with autism.
Medications, these authors caution, are considered to only be a short-term treatment. Or, to ‘boost’ the effects of other meds. And, the reduction or withdrawal of that therapeutic dosage of medication might result in relapse. Also considered was that these psychotropic drugs may have maximum side-effects and minimum effectiveness.
< My Thoughts > "...psychotropic drugs..."
I am not including the brand name of the drugs used in these studies, due to the slight chance that someone may interpret that mention as an endorsement or recommendation. Hope you understand. Thanks.
Colson & Colson (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 (2004) examines how ‘deeply’ established treatments impact the range of symptoms that are expressed in autism, within each domain area. He says – research has indicated that social skills appear to be pivotal responses. That, when trained, can lead to improvements in other non-targeted symptoms of autism; such as verbal and nonverbal communication. While autism is undoubtedly a brain disorder, the complete neurobiological basis of autism remains to be identified.
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.
REFERENCES: INTRODUCTION: (UNIT 7-1, Section 1) OTHER THERAPIES –
INTRODUCTION, MEDICATION & DIETARY APPROACH
Askin, E. & Moore, N. (2019). The Health Care Handbook, 2nd Edition; Washington University, St. Louis, MO.
Barron, J. (2011). There’s a Boy in Here: Emerging from the Bonds of Autism; eBook Edition.
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.
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; V27, p285-305.
Deb, S., Thomas, M., Bright, C. (2001). Mental Disorder in Adults with Intellectual Disability; Journal of Intellectual Disability Research; V45, Part 6, p506-514.
Floyd, E. & McIntosh, D. (2009). Current Practice in Psychopharmacology for Children & Adolescents with Autism Spectrum Disorders; Psychology in the School; V49:9.
Gonzalez, E., Summers, C., et al. (2015). Developmental Surveillance & Referral in a Traditionally Medically Underserved Border Community; Maternal Child Health, V19, p2323-2328.
Lenne, B. & Waldby, C. (2011). Sorting Out Autism Spectrum Disorders: Evidence-based Medicine & the Complexities of the Clinical Encounter; Health Sociology Review; V20:1, 70-83.
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/
Schall, C. (2002). A Consumer’s Guide to Monitoring Psychotropic Medication for Individuals with Autism Spectrum Disorders; Focus on Autism & Other Developmental Disabilities; V17:4, p. 229-235.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism; New York, New York: Penguin Random House Company.
Staff Writer (2019). African Americans and Autism: Research; Retrieved online from – http://www.child-autism-parent-cafe.com/african-americans-and-autism.html/
DIETARY APPROACHES
What you may find under DIETARY APPROACHES could be that many of these treatments are unproven. Some professionals even put dietary approaches in the category of COMPLEMENTARY & ALTERNATIVE MEDICINE (CAMs). But a medical doctor may recommend biomedical intervention after testing your child for food allergies, gastrointestinal (GI) problems, and/or nutritional deficiencies. So, this becomes somewhat of a ‘grey’ area when finding well-founded approaches to programs and treatments.
Marshall, et al. (2014) wrote a paper which identifies, reviews, and analyzes early interventions for children less than 6 years old, with ASD and feeding difficulties. They looked at interventions successful with ways to increase desirable mealtime behavior.
This reminds 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.
McNeill (2020) makes us aware that treating the ‘gut’ (gastrointestinal/GI) is the first step towards improving sensorial processing function; but it may not reverse an already established processing disorder. Further therapies should be considered to address and strengthen each individual processing skill as needed. Such therapies should aim to train the functionality of the ‘sense’ in question, to perform at best of its capacity.
< My Thoughts > “…treating the ‘gut’…”
The literature shows that all persons must have a healthy body, in order to have healthy functioning brain and gut. This becomes more difficult when ‘autism’ is in the picture. Continuing to constantly make ‘healthy’ choices, for your child’s life takes attention to detail. It’s not easy, but good health and good nutrition is necessary to support all the meds, therapies, and regimes that your child faces, daily.
Mari-Bauset, 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.
They say, use only sea salt. Himalayan, in particular, may be the cleanest; as the oceans contain chemicals including lead and mercury. Common refined table salt contains aluminum. Yes, aluminum. It is used to cut the salt and keep the granules from sticking together. Needless to say this is quite unhealthy, and it’s important to know that aluminum enhances the toxicity of other toxins.
Additives to maintain and improve freshness, to improve nutritional value, and improve taste, texture, and appearance. All additives must be clearly shown on all food labels. Consumers need to be vigilant about checking product information, not only for cost per unit information, but for possible allergy or ‘other’ concerns. Retrieved online from – https://www.fda.gov/food/food-ingredients-packaging/overview-food-ingredients-additives-colors/
< My Thoughts > “…clearly shown on all food labels…”
Problems quickly arise when the consumer tries to unravel the complexity of these commonly used additives. Ingredients added, which also may have the possible purpose of, making you want to drink or eat more of the product.
Pennesi & Klien (2012) in this study, found that while ‘some’ children may respond positively to the dietary intervention, other research cautions that they may not. Success seems to depend upon the type, or severity, of the child’s GI abnormalities, and immune functions, or disfunctions.
Researchers also reveal that parents who implemented the diet intervention for 6 months, or less, reported fewer improvements. And, that those who stayed on the diet for more than 6 months, reported “improvements in speech and communication skills. Included in the improvements, were decreases in hyperactive behavior, improvements in their child’s ability to focus, and decreases in sleep problems; following implementation of a gluten-free, casein-free diet.”
According to this study, some physical symptoms said to have been alleviated include – diarrhea & constipation. There were food allergy symptoms including skin problems, red cheeks, red ears, rash and/or red ring around mouth and/anus, hives, dark circles under eyes, sneezing, stuffed nose, itchy, watery & red eyes.
< My Thoughts > “…reported “improvements…”
This is a limited study which does not clarify what ALL of the ‘improvements’ are, nor how long the trials were; or how long the changes lasted.
But there are few ‘sound diet’ studies, and they say one of the reasons may be that staying on a ‘strict gluten-free & casein-free diet’ requires ‘strict’ implementation. Because the child may be with others during the day, or from time-to-time, s/he may be getting foods which are not allowed. Therefore, the ‘diet’ data cannot always be authenticated. Then there is also the confusion between whether the child has gastrointestinal abnormalities or an immune system dysfunction. Pointing out too, that the child may have sensitivities, or social behaviors related to food. These authors feel that the child must be diagnosed and certain things ruled out, before treatment can begin.
< My Thoughts > “…’strict gluten-free & casein-free diet’…”
Parents often feel that changing a child’s diet is a minimal, or a ‘non-severe’ approach to solving some of their problems. Consider however, that there will at least be a ‘nutritional’ effect, and perhaps a psychological one. Incorporating ‘strict’ food programs, means that everyone spending time with the child has to be onboard; even/especially Grandparents, and/or constant caregivers. Therefore, some approaches may not be as ‘harmless’ as they first may appear. Consult professionals, first.
Cohen (2011) recalls test results come back from Dr. Destroyer’s office. Ezra is sensitive to wheat and milk. (The two main things he eats.) To make sure he receives any nutrition, I have to give him Frankenmilk. A pediatrician told me long ago that I should replace what Ezra eats, with broccoli and steak. “Eventually,” she told me, “he’ll eat it.”
No, Ezra will not eat it. He will put mud and dirty leaves in his mouth, before eating broccoli and steak. Years later, I’ll feel fine about my food choices for Ezra. The gluten and dairy free diet, is not based on any scientific substantiation. But the diet is based on the theory of Norwegian doctor and researcher, Kalle Reichelt; who believed that our children cannot completely breakdown wheat and dairy products.
We took Ezra off cow’s milk and had him drink rice milk instead. We first blended the rice milk into cow’s milk gradually, until we switched him all the way over to rice, without incident.
Katuzna-Czaplinska & Jozwik-Pruska (2016) caution that the child with ASD may already suffer from nutritional and metabolic problems. Problems which may be made worse by reducing nutrient intake, without proper supplementation, or professional advice.
Rudy (2020) relates that many children with autism need nutritional therapy; due to their intolerances to certain foods. Pediatricians can be consulted concerning any diet-related challenges for ‘picky eaters’, who are lacking certain nutrients, essential vitamins or minerals.
Next, Patel & DuPont (2015) say a dietary therapy approach, which seems to be gaining momentum, is that of ‘Bacteriotherapy’. This therapy includes 3 slightly different agents: probiotics, prebiotics, and synbiotics. They describe probiotics as living bacteria that benefit the host. Whereas, prebiotics are nondigestible compounds, that favorably change the intestinal microbiota. And, synbiotics are defined as products that contain both probiotics and prebiotics.
< My Thoughts > “…dietary therapy approach…”
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.
It 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.
Occupational or Physical Therapists may start a ‘SENSORY DIET’ by introducing sensory-based activities which help to desensitize. Also, it is not to be confused with ‘picky eater’ problems, which can be caused by ‘oral defensiveness’.
Note: This will be considered under ‘SENSORY’ issues; in UNIT 4 SENSORY.
Siri (2010) suggests putting your child on an ‘organic’ diet, and removing additives, preservatives, colorings, processed carbs, and sugars. And, don’t forget bottled juice, which is usually mostly water and high fructose corn syrup, also known as ‘sugar’. Instead, utilize complex carbs, which have slower absorption, and healthful proteins. You may want to check with a nutritionist.
< My Thoughts > “…don’t forget bottled juice…”
Juice, as can be seen on the ‘nutritional’ label, can be mostly water and high fructose corn syrup. Why not make your own juice in a juicer or a blender? The whole family can benefit. Or, better yet eat a piece of fruit. When you do, you get the benefits of soluble fiber.
If the fruit is ‘organic’, it is purported to have come from an ‘all natural’ growth process. Without Genetically Modified Organisms (GMOs), such as grown from artificially modified seeds or plants. And, no chemical fertilizers are used on the plants; nor, water containing chemicals, or chemical waste.
More on food & diet from Siri – Keep in mind that ‘nondairy’ does not mean milk-free. ‘Nondairy’ is a term the dairy industry invented to indicate less than 0.5 percent milk by weight, which could mean that the product has as much casein as in whole milk.
Siri shares that one child only ate Chiquita bananas, because he fixated on the label. Other fruit such as apples and oranges were readily accepted when Chiquita labels were put on them. Try putting ‘different’, but similar foods in the cereal box, or the package of their favorite food. Put a homemade hamburger (turkey burger on a gluten-free bun) in a McDonald’s package, to see if it will be accepted.
< My Thoughts > “…accepted when Chiquita labels...”
Switching things up, can be part of ‘food chaining’ techniques therapists use to expand a child’s diet choices. One way to expand a child’s palate to more acceptable foods, would be to disguise the ‘new’ food with something the child really, really likes. Like a new fruit with the recognizable Chiquita banana label on it, as Siri suggests. Or, present a new food cooked, or shaped in a familiar way, made fried and crunchy, or soft and gooey. Sonny, a Mickey Mouse fan, likes almond butter and jelly sandwiches with crusts off, so we use a Mickey Mouse cookie cutter to solve both problems.
Wheeler (2017) wants parents to know that while there is no universally accepted theory or causation for autism, there is likely a complex relationship between genetic predisposition and an environmental trigger.
There are four broad areas of focus, intertwined and each affects the other – Gastrointestinal abnormalities, immune dysfunctions, detoxification irregularities, and nutritional deficiencies, or imbalances; where one of the areas may impact the other –
Retrieved online from – https://www.iidc.indiana.edu/pages/An-Introduction-to-Possible-Biomedical-Causes-and-Treatments-for-Autism-Spectrum-Disorders/
Merchent (2007) tells the doctor, “My husband is going to ask me why our son is at risk for autism.” The doctor said, “Well, I wouldn’t label him like that; but he does share a biomedical spectrum of disorders with the autistic,” he responded. It was too late. He had already told me my son was at risk for autism. I was scared stiff.
This new doctor, a specialist in lost causes – chronic fatigue, fibromyalgia, autism, cancer, and immune disorders, was the first M.D. to admit there was something wrong with Clay. He said Clay was not producing growth hormone, and he wasn’t absorbing the nutrients from the food he ate.
< My Thoughts > “…specialist in lost causes…”
With the knowledge that many parents are very vulnerable when it comes to investing in ‘sure cures’, this somewhat ‘outlier’ information has been included. Please be advised, that my intentions here are purely to begin to inform both myself, and others. Now, it is up to you to find the information and path which will best serve you and your family.
Hinds (2014) helps us to understand that there was always the never-ending search to find a cure for Ryan. That was a therapy for me too, because I WASN’T GIVING UP! We listened to many people who had numerous and varied ideas of how to help us. These supposed ‘experts’ drained our pocketbooks and, even worse, wasted our valuable time.
After ‘expert’ chasing for more than a year, I finally settled down and did my homework about the validity of particular treatments. I learned to use my head, instead of my fear. There was no miracle cure for autism. There still isn’t and I’m still looking.
Therapy was the best option. Our life, Ryan’s life, was now a treadmill of speech therapy, social skills therapy, school and classroom therapy, swimming lessons, trampoline playdates; and a whole host of other things. Actually, I really didn’t want to do any of these things. I just wanted to be Ryan and Megan’s mommy, but that was no longer an option. We had too much therapy to do.
REFERENCES: CHAPTER 4 – NONTRADITIONAL THERAPIES; SECTION 5; DIETARY APPROACH
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; eBook Edition.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Katuzna-Czaplinska, J. & Jozwik-Pruska, J. (2016). Nutritional Strategies & Personalized Diet in Autism; Choice or Necessity?; Food Science & Technology; V49; p45-50.
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.
McNeill, C. (2020). Auditory Processing Disorder in Children; Mindd Foundation; Retrieved online from – https://mind.org/auditory-processing-disorder-children/
Merchent, T. (2007). He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyss; eBook Edition.
Pennesi, C. & Klein, L. (2012). Effectiveness of the Gluten-free, Casein-free Diet for Children Diagnosed with ASD; Nutritional Neuroscience; V15:2; p85-91.
Patel, R. & DuPont, H. (2015). Approaches for Bacteriotherapy: Prebiotics, New-Generation Probiotics, and Synbiotics; Clinical Infectious Diseases; V60; p108-121.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online, retrieved online from – https://www.verywellhealth.com/lisa-jo-rudy-259829/
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Wheeler, M. (2017). An Introduction to Possible Biomedical Causes and Treatments for Autism Spectrum Disorders; Indiana University, Bloomington.
APPENDIX – OVERVIEW OF FOOD ADDITIVES, FDA (Online LINK) – Overview of Food Ingredients, Additives & Colors (fda.gov)
In its broadest sense, a food additive is any substance added to food. Legally, the term refers to “any substance the intended use of which results or may reasonably be expected to result — directly or indirectly — in its becoming a component or otherwise affecting the characteristics of any food.” This definition includes any substance used in the production, processing, treatment, packaging, transportation or storage of food. The purpose of the legal definition, however, is to impose a premarket approval requirement. Therefore, this definition excludes ingredients whose use is generally recognized as safe (where government approval is not needed), those ingredients approved for use by FDA or the U.S. Department of Agriculture prior to the food additives provisions of law, and color additives and pesticides where other legal premarket approval requirements apply.
Direct food additives are those that are added to a food for a specific purpose in that food. For example, xanthan gum — used in salad dressings, chocolate milk, bakery fillings, puddings and other foods to add texture — is a direct additive. Most direct additives are identified on the ingredient label of foods.
Indirect food additives are those that become part of the food in trace amounts due to its packaging, storage or other handling. For instance, minute amounts of packaging substances may find their way into foods during storage. Food packaging manufacturers must prove to the U.S. Food and Drug Administration (FDA) that all materials coming in contact with food are safe before they are permitted for use in such a manner.
What Is a Color Additive?A color additive is any dye, pigment or substance which when added or applied to a food, drug or cosmetic, or to the human body, is capable (alone or through reactions with other substances) of imparting color. FDA is responsible for regulating all color additives to ensure that foods containing color additives are safe to eat, contain only approved ingredients and are accurately labeled.
Color additives are used in foods for many reasons: 1) to offset color loss due to exposure to light, air, temperature extremes, moisture and storage conditions; 2) to correct natural variations in color; 3) to enhance colors that occur naturally; and 4) to provide color to colorless and “fun” foods. Without color additives, colas wouldn’t be brown, margarine wouldn’t be yellow and mint ice cream wouldn’t be green. Color additives are now recognized as an important part of practically all processed foods we eat.
FDA’s permitted colors are classified as subject to certification or exempt from certification, both of which are subject to rigorous safety standards prior to their approval and listing for use in foods.
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.
What you may find under DIETARY APPROACHES could be that many of these treatments are unproven. Some professionals even put dietary approaches in the category of COMPLEMENTARY & ALTERNATIVE MEDICINE (CAMs). But a medical doctor may recommend biomedical intervention after testing your child for food allergies, gastrointestinal (GI) problems, and/or nutritional deficiencies. So, this becomes somewhat of a ‘grey’ area when finding well-founded approaches to programs and treatments.
Marshall, et al. (2014) wrote a paper which identifies, reviews, and analyzes early interventions for children less than 6 years old, with ASD and feeding difficulties. They looked at interventions successful with ways to increase desirable mealtime behavior.
This reminds 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.
McNeill (2020) makes us aware that treating the ‘gut’ (gastrointestinal/GI) is the first step towards improving sensorial processing function; but it may not reverse an already established processing disorder. Further therapies should be considered to address and strengthen each individual processing skill as needed. Such therapies should aim to train the functionality of the ‘sense’ in question, to perform at best of its capacity.
< My Thoughts > “…treating the ‘gut’…”
The literature shows that all persons must have a healthy body, in order to have healthy functioning brain and gut. This becomes more difficult when ‘autism’ is in the picture. Continuing to constantly make ‘healthy’ choices, for your child’s life takes attention to detail. It’s not easy, but good health and good nutrition is necessary to support all the meds, therapies, and regimes that your child faces, daily.
Mari-Bauset, 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.
They say, use only sea salt. Himalayan, in particular, may be the cleanest; as the oceans contain chemicals including lead and mercury. Common refined table salt contains aluminum. Yes, aluminum. It is used to cut the salt and keep the granules from sticking together. Needless to say this is quite unhealthy, and it’s important to know that aluminum enhances the toxicity of other toxins.
Additives to maintain and improve freshness, to improve nutritional value, and improve taste, texture, and appearance. All additives must be clearly shown on all food labels. Consumers need to be vigilant about checking product information, not only for cost per unit information, but for possible allergy or ‘other’ concerns. Retrieved online from – https://www.fda.gov/food/food-ingredients-packaging/overview-food-ingredients-additives-colors/
< My Thoughts > “…clearly shown on all food labels…”
Problems quickly arise when the consumer tries to unravel the complexity of these commonly used additives. Ingredients added, which also may have the possible purpose of, making you want to drink or eat more of the product.
Pennesi & Klien (2012) in this study, found that while ‘some’ children may respond positively to the dietary intervention, other research cautions that they may not. Success seems to depend upon the type, or severity, of the child’s GI abnormalities, and immune functions, or disfunctions.
Researchers also reveal that parents who implemented the diet intervention for 6 months, or less, reported fewer improvements. And, that those who stayed on the diet for more than 6 months, reported “improvements in speech and communication skills. Included in the improvements, were decreases in hyperactive behavior, improvements in their child’s ability to focus, and decreases in sleep problems; following implementation of a gluten-free, casein-free diet.”
According to this study, some physical symptoms said to have been alleviated include – diarrhea & constipation. There were food allergy symptoms including skin problems, red cheeks, red ears, rash and/or red ring around mouth and/anus, hives, dark circles under eyes, sneezing, stuffed nose, itchy, watery & red eyes.
< My Thoughts > “…reported “improvements…”
This is a limited study which does not clarify what ALL of the ‘improvements’ are, nor how long the trials were; or how long the changes lasted.
But there are few ‘sound diet’ studies, and they say one of the reasons may be that staying on a ‘strict gluten-free & casein-free diet’ requires ‘strict’ implementation. Because the child may be with others during the day, or from time-to-time, s/he may be getting foods which are not allowed. Therefore, the ‘diet’ data cannot always be authenticated. Then there is also the confusion between whether the child has gastrointestinal abnormalities or an immune system dysfunction. Pointing out too, that the child may have sensitivities, or social behaviors related to food. These authors feel that the child must be diagnosed and certain things ruled out, before treatment can begin.
< My Thoughts > “…’strict gluten-free & casein-free diet’…”
Parents often feel that changing a child’s diet is a minimal, or a ‘non-severe’ approach to solving some of their problems. Consider however, that there will at least be a ‘nutritional’ effect, and perhaps a psychological one. Incorporating ‘strict’ food programs, means that everyone spending time with the child has to be onboard; even/especially Grandparents, and/or constant caregivers. Therefore, some approaches may not be as ‘harmless’ as they first may appear. Consult professionals, first.
Cohen (2011) recalls test results come back from Dr. Destroyer’s office. Ezra is sensitive to wheat and milk. (The two main things he eats.) To make sure he receives any nutrition, I have to give him Frankenmilk. A pediatrician told me long ago that I should replace what Ezra eats, with broccoli and steak. “Eventually,” she told me, “he’ll eat it.”
No, Ezra will not eat it. He will put mud and dirty leaves in his mouth, before eating broccoli and steak. Years later, I’ll feel fine about my food choices for Ezra. The gluten and dairy free diet, is not based on any scientific substantiation. But the diet is based on the theory of Norwegian doctor and researcher, Kalle Reichelt; who believed that our children cannot completely breakdown wheat and dairy products.
We took Ezra off cow’s milk and had him drink rice milk instead. We first blended the rice milk into cow’s milk gradually, until we switched him all the way over to rice, without incident.
Katuzna-Czaplinska & Jozwik-Pruska (2016) caution that the child with ASD may already suffer from nutritional and metabolic problems. Problems which may be made worse by reducing nutrient intake, without proper supplementation, or professional advice.
Rudy (2020) relates that many children with autism need nutritional therapy; due to their intolerances to certain foods. Pediatricians can be consulted concerning any diet-related challenges for ‘picky eaters’, who are lacking certain nutrients, essential vitamins or minerals.
Next, Patel & DuPont (2015) say a dietary therapy approach, which seems to be gaining momentum, is that of ‘Bacteriotherapy’. This therapy includes 3 slightly different agents: probiotics, prebiotics, and synbiotics. They describe probiotics as living bacteria that benefit the host. Whereas, prebiotics are nondigestible compounds, that favorably change the intestinal microbiota. And, synbiotics are defined as products that contain both probiotics and prebiotics.
< My Thoughts > “…dietary therapy approach…”
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.
It 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.
Occupational or Physical Therapists may start a ‘SENSORY DIET’ by introducing sensory-based activities which help to desensitize. Also, it is not to be confused with ‘picky eater’ problems, which can be caused by ‘oral defensiveness’.
Note: This will be considered under ‘SENSORY’ issues; in UNIT 4 SENSORY.
Siri (2010) suggests putting your child on an ‘organic’ diet, and removing additives, preservatives, colorings, processed carbs, and sugars. And, don’t forget bottled juice, which is usually mostly water and high fructose corn syrup, also known as ‘sugar’. Instead, utilize complex carbs, which have slower absorption, and healthful proteins. You may want to check with a nutritionist.
< My Thoughts > “…don’t forget bottled juice…”
Juice, as can be seen on the ‘nutritional’ label, can be mostly water and high fructose corn syrup. Why not make your own juice in a juicer or a blender? The whole family can benefit. Or, better yet eat a piece of fruit. When you do, you get the benefits of soluble fiber.
If the fruit is ‘organic’, it is purported to have come from an ‘all natural’ growth process. Without Genetically Modified Organisms (GMOs), such as grown from artificially modified seeds or plants. And, no chemical fertilizers are used on the plants; nor, water containing chemicals, or chemical waste.
More on food & diet from Siri – Keep in mind that ‘nondairy’ does not mean milk-free. ‘Nondairy’ is a term the dairy industry invented to indicate less than 0.5 percent milk by weight, which could mean that the product has as much casein as in whole milk.
Siri shares that one child only ate Chiquita bananas, because he fixated on the label. Other fruit such as apples and oranges were readily accepted when Chiquita labels were put on them. Try putting ‘different’, but similar foods in the cereal box, or the package of their favorite food. Put a homemade hamburger (turkey burger on a gluten-free bun) in a McDonald’s package, to see if it will be accepted.
< My Thoughts > “…accepted when Chiquita labels...”
Switching things up, can be part of ‘food chaining’ techniques therapists use to expand a child’s diet choices. One way to expand a child’s palate to more acceptable foods, would be to disguise the ‘new’ food with something the child really, really likes. Like a new fruit with the recognizable Chiquita banana label on it, as Siri suggests. Or, present a new food cooked, or shaped in a familiar way, made fried and crunchy, or soft and gooey. Sonny, a Mickey Mouse fan, likes almond butter and jelly sandwiches with crusts off, so we use a Mickey Mouse cookie cutter to solve both problems.
Wheeler (2017) wants parents to know that while there is no universally accepted theory or causation for autism, there is likely a complex relationship between genetic predisposition and an environmental trigger.
There are four broad areas of focus, intertwined and each affects the other – Gastrointestinal abnormalities, immune dysfunctions, detoxification irregularities, and nutritional deficiencies, or imbalances; where one of the areas may impact the other –
- Bacteria, yeast or fungus overgrowth; may be treated with anti-fungal medication.
- “Leaky gut”, defined as an increased permeability of the intestinal lining. This may possibly affect the brain, may be treated with gluten & casein-free diets.
- Alteration of intestinal flora, as a result of earlier antibiotic use, may be treated with probiotics (bacteriotherapy).
- Immune dysfunction, thought to be genetically linked to environmentally acquired ailments, may be treated with an anti-viral medication.
Retrieved online from – https://www.iidc.indiana.edu/pages/An-Introduction-to-Possible-Biomedical-Causes-and-Treatments-for-Autism-Spectrum-Disorders/
Merchent (2007) tells the doctor, “My husband is going to ask me why our son is at risk for autism.” The doctor said, “Well, I wouldn’t label him like that; but he does share a biomedical spectrum of disorders with the autistic,” he responded. It was too late. He had already told me my son was at risk for autism. I was scared stiff.
This new doctor, a specialist in lost causes – chronic fatigue, fibromyalgia, autism, cancer, and immune disorders, was the first M.D. to admit there was something wrong with Clay. He said Clay was not producing growth hormone, and he wasn’t absorbing the nutrients from the food he ate.
< My Thoughts > “…specialist in lost causes…”
With the knowledge that many parents are very vulnerable when it comes to investing in ‘sure cures’, this somewhat ‘outlier’ information has been included. Please be advised, that my intentions here are purely to begin to inform both myself, and others. Now, it is up to you to find the information and path which will best serve you and your family.
Hinds (2014) helps us to understand that there was always the never-ending search to find a cure for Ryan. That was a therapy for me too, because I WASN’T GIVING UP! We listened to many people who had numerous and varied ideas of how to help us. These supposed ‘experts’ drained our pocketbooks and, even worse, wasted our valuable time.
After ‘expert’ chasing for more than a year, I finally settled down and did my homework about the validity of particular treatments. I learned to use my head, instead of my fear. There was no miracle cure for autism. There still isn’t and I’m still looking.
Therapy was the best option. Our life, Ryan’s life, was now a treadmill of speech therapy, social skills therapy, school and classroom therapy, swimming lessons, trampoline playdates; and a whole host of other things. Actually, I really didn’t want to do any of these things. I just wanted to be Ryan and Megan’s mommy, but that was no longer an option. We had too much therapy to do.
REFERENCES: CHAPTER 4 – NONTRADITIONAL THERAPIES; SECTION 5; DIETARY APPROACH
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; eBook Edition.
Hinds, M. (2014). I Know You’re In There: Winning Our War Against Autism; eBook Edition.
Katuzna-Czaplinska, J. & Jozwik-Pruska, J. (2016). Nutritional Strategies & Personalized Diet in Autism; Choice or Necessity?; Food Science & Technology; V49; p45-50.
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.
McNeill, C. (2020). Auditory Processing Disorder in Children; Mindd Foundation; Retrieved online from – https://mind.org/auditory-processing-disorder-children/
Merchent, T. (2007). He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyss; eBook Edition.
Pennesi, C. & Klein, L. (2012). Effectiveness of the Gluten-free, Casein-free Diet for Children Diagnosed with ASD; Nutritional Neuroscience; V15:2; p85-91.
Patel, R. & DuPont, H. (2015). Approaches for Bacteriotherapy: Prebiotics, New-Generation Probiotics, and Synbiotics; Clinical Infectious Diseases; V60; p108-121.
Rudy, L. (2020). What is the Best Treatment for Autism?; Very Well Health Online, retrieved online from – https://www.verywellhealth.com/lisa-jo-rudy-259829/
Siri, K. (2010). 101 Tips for Parents of Boys with Autism: The Most Crucial Things You Need to Know; eBook Edition.
Wheeler, M. (2017). An Introduction to Possible Biomedical Causes and Treatments for Autism Spectrum Disorders; Indiana University, Bloomington.
APPENDIX – OVERVIEW OF FOOD ADDITIVES, FDA (Online LINK) – Overview of Food Ingredients, Additives & Colors (fda.gov)
In its broadest sense, a food additive is any substance added to food. Legally, the term refers to “any substance the intended use of which results or may reasonably be expected to result — directly or indirectly — in its becoming a component or otherwise affecting the characteristics of any food.” This definition includes any substance used in the production, processing, treatment, packaging, transportation or storage of food. The purpose of the legal definition, however, is to impose a premarket approval requirement. Therefore, this definition excludes ingredients whose use is generally recognized as safe (where government approval is not needed), those ingredients approved for use by FDA or the U.S. Department of Agriculture prior to the food additives provisions of law, and color additives and pesticides where other legal premarket approval requirements apply.
Direct food additives are those that are added to a food for a specific purpose in that food. For example, xanthan gum — used in salad dressings, chocolate milk, bakery fillings, puddings and other foods to add texture — is a direct additive. Most direct additives are identified on the ingredient label of foods.
Indirect food additives are those that become part of the food in trace amounts due to its packaging, storage or other handling. For instance, minute amounts of packaging substances may find their way into foods during storage. Food packaging manufacturers must prove to the U.S. Food and Drug Administration (FDA) that all materials coming in contact with food are safe before they are permitted for use in such a manner.
What Is a Color Additive?A color additive is any dye, pigment or substance which when added or applied to a food, drug or cosmetic, or to the human body, is capable (alone or through reactions with other substances) of imparting color. FDA is responsible for regulating all color additives to ensure that foods containing color additives are safe to eat, contain only approved ingredients and are accurately labeled.
Color additives are used in foods for many reasons: 1) to offset color loss due to exposure to light, air, temperature extremes, moisture and storage conditions; 2) to correct natural variations in color; 3) to enhance colors that occur naturally; and 4) to provide color to colorless and “fun” foods. Without color additives, colas wouldn’t be brown, margarine wouldn’t be yellow and mint ice cream wouldn’t be green. Color additives are now recognized as an important part of practically all processed foods we eat.
FDA’s permitted colors are classified as subject to certification or exempt from certification, both of which are subject to rigorous safety standards prior to their approval and listing for use in foods.
- Certified colors are synthetically produced (or human made) and used widely because they impart an intense, uniform color, are less expensive, and blend more easily to create a variety of hues. There are nine certified color additives approved for use in the United States (e.g., FD&C Yellow No. 6. See chart for complete list.). Certified food colors generally do not add undesirable flavors to foods.
- Colors that are exempt from certification include pigments derived from natural sources such as vegetables, minerals or animals. Nature derived color additives are typically more expensive than certified colors and may add unintended flavors to foods. Examples of exempt colors include annatto extract (yellow), dehydrated beets (bluish-red to brown), caramel (yellow to tan), beta-carotene (yellow to orange) and grape skin extract (red, green).
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.
NOTE about: “Programs, Therapies, & Interventions”
Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence with ‘autism’ may imply ‘cure’ or ‘long-term’ effect. That is NOT the intention here.
Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.
There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. To some, AUTISM is a business. So, remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation here.
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.
Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence with ‘autism’ may imply ‘cure’ or ‘long-term’ effect. That is NOT the intention here.
Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.
There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. To some, AUTISM is a business. So, remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation here.
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.