Posts Tagged ‘autism’

The Challenge of Challenging Behaviors

Sunday, June 11th, 2017

The Child Development Center has been experiencing a rash (dare I say, “Epidemic”?) of children who present with poor socialization, decreased attention requiring prompting and redirection, sensory and/or oppositional issues, extreme rudeness, dark thoughts and threats, obsessive activities, immaturity, and aggressiveness (physical, verbal or both). The children are not ‘autistic’. And, it’s not ‘just ADHD’.

One parent of such a child recently wrote that he was saddened by these disturbing developmental conditions in his otherwise amazing kid. When children do not ‘come out’ the way that we had anticipated, it brings heartbreak and disappointment.

Extremely disruptive displays are not merely frustrating.
They can be embarrassing and even cause depression.
In today’s world, that has become the journey of (too) many parents.

What Doesn’t Work
Corporal punishment was the traditional mainstay for ‘making children behave’. Thus, grandparents often complain that today’s parents are not firm enough. First, the price that is paid by utilization of either verbal or physical punishment is self-esteem – by both parties. Abusive actions, offhandedly employed in the last century, may prompt a Child Protective Services visit in this one. Second, affected youth appear to experience increased pain resistance. Eventually, that form of discipline goes unnoticed. Third, such a reaction is the exact opposite what we are trying to instill.

In the past months, we have examined a number of children whose medical pharmacopeia appeared proportional to their age. There was a 7 year-old taking three medications, and one teen was already getting Abilify, Risperidone, Geodon, Valproic acid, and Lamectal, among other pharmaceuticals. And, her psychiatrist was suggesting more. When does it stop?

I am certain that parents and doctors arrive at such multiple combinations of drugs honestly. Each symptom is met with another medicine. The patient is then drowning in chemical soup. What is the plan?

What Can Work
A medical workup is required. The prescribing physician is obliged to follow levels of anticonvulsants (for symptom adjustment), liver and kidney function (for drug elimination), blood count, and nutritional status.

In given patients, practitioners should consider fungal overgrowth, PANDAS, or Lyme disease. Screening for toxic substances has been a recent addition to our armamentarium. So new, perhaps, that such data is not necessarily that helpful, yet. Likewise, genetic technology has become available that better determines how patients metabolize various pharmaceutical preparations, but usefulness in clinical practice remains limited. To the extent that an astute clinician determines an underlying problem(s), great strides can be made toward amelioration of some disturbances.

Behavioral interventions are the proven treatment. It takes a professional therapist to get challenging children to display self-control. Common sense dictates that such juveniles require absolute consistency. One pre-adolescent demonstrated an uncanny ability to mock my consultation. Perhaps, the parents were thinking, “Now, you see how rude he is!” when they laughed it off. Regardless, their response validated the child’s disrespect.

One parent has developed her own form of pre-vigilance. Mom is able to ‘sense’ when her kids aren’t able to concentrate, and provides relief at the earliest sign of distractibility.

Rather than additional pharmaceutical preparations, doctors should consider which ones to decrease or discontinue. The list often contains drugs that were instituted for behaviors that are no longer at issue. Additionally, it can be helpful to consider less toxic medications or even supplements when the status quo is not doing the job.

Conclusions
My diagnosis is that such challenging children have escaped ‘traditional’ autism. It’s not obsessive-compulsive disorder, Tourette’s, schizophrenia, bipolar disorder, sensory/visual/auditory processing disorder, oppositional defiance disorder, etc.
It’s processing disturbances caused by our toxic environment acting on susceptible individuals.

Finding relief may be exasperating, with periods of improvement and regression. This is when patience and the knowledge that the child has the capacity to achieve necessary skills to ‘make it’ need to take precedence. Some parents choose home-schooling, special schooling, and less-than-hoped-for academic situations. Some must resort to medications.

This alteration in childhood development is not FUN. For many, it’s parenthood in the 21st Century. Consider that the best course is to ‘first, cause no harm’.

Sleeping Sickness Medicine for Autism?

Tuesday, June 6th, 2017

‘Game-changer for autism’:
100-year-old drug reverses symptoms, study finds

Recent headlines, such as those, have stimulated the submission of a fair number of emails that went something like this…

Dear Dr. Udell,
I saw this study on the internet.
I would like to try this medicine for my child. What do you think?

Dear Parents,
After further consideration, here are my observations about this serious pharmaceutical intervention:

1. What is suramin?
It is a chemical that was invented to cure parasitic diseases. The dosage used for autism has been significantly reduced.

2. What was the actual paper?
This treatment is based on a unique approach to autism, and it represents a preliminary test of whether this drug might be safe and effective for common signs and symptoms of this emerging epidemic.

There were 5 patients in each group of 4-17 year-old boys, who were either given a single dose of the medication, or placebo. Outcomes were measured in the first week, and 6 weeks later. There were generalized improvements in many areas. As blood levels decreased over time, so did some advances. Surprisingly, progress was seen in speech apraxia, even in 2 older children.

The drug was well-tolerated, except for “a short-lived, self-limiting rash.”

3. How does the drug work?
The authors explained, “One approach to addressing the challenge of many etiologies of ASD is to define a common pathophysiology that can contribute to the core diagnostic symptoms, regardless of the initiating genetic and environmental triggers. We hypothesized that there is a conserved cellular response to metabolic perturbation or danger that is shared by all children with ASD… in mice produced a treatable metabolic syndrome…” The administration of a medicine that adjusts for an alteration in RNA and DNA manufacture, and energy production, “…corrected both the behavioral and metabolic features of these genetic and environmental mouse models of ASD.”

4.  How is it administered?
INTRAVENOUS PUSH. From the results of this research, it would appear that doses may be required every ? 1-2 months for ?? months? This is not for the faint of heart.

5. How much would it cost?
The drug, alone, appears to cost less than $50, depending on the source. If it is found to be successful, let’s see how the powers-that-be jack up the price. Plus, there would be additional charges of IV administration and followup testing.

6. What labs must be followed?
That remains to be discovered with increasing experience and research.

7. What are the long term effects?
Ditto #6.

Conclusion
This medicine may simply share many of the same properties as the myriad of other gut-altering treatments. Positive results require frequent administration, and ‘tolerance’ to therapy sometimes makes them less effective.

However, the use of suramin is based on a different paradigm (how cells respond to stress) that takes into account the diversity of possible causes of autism, both environmental and genetic. That such a new direction in research is being explored is exciting and hopeful.

For now, families need to continue to be patient. Especially in children, interventions that are so invasive and potentially harmful require more study and followup, in order for parents to make a truly informed decision.

Stem Cell Therapy for Autism… cont’d

Sunday, April 9th, 2017

As doctors try to understand and consider various emerging therapies for patients experiencing signs and symptoms of autism, the question of Stem Cell therapy has come to the fore. A Duke University professor barreled onto the scene, recently, with a pronouncement that sounds like a cure, even though it’s not.

Understanding the study
The project is Clinical Trial to Evaluate the Efficacy of Umbilical Cord Blood to Improve Outcomes for Children with Autism Spectrum Disorder. This was the first phase. The goals were to determine safety, and to evaluate the usefulness of a variety of tests to assess whether the treatment works.

Does giving a child’s own cells, which were collected from the umbilical cord at birth, back into their bloodstream, result in any adverse events? The report broadcast on CNN focused on a 7 year-old who seemed nearly OK, playing with her older, neurotypical sister. The treatment had taken place a couple of years earlier.

Dr. Joanne Kurtzberg, one of the researchers, proclaimed, “We saw improvements in 6 months…” She used the word curative twice in the same sentence, even though her point was ignorance of that outcome. She concluded the interview with, “of course we have to do a placebo controlled randomized trial to answer the question…” The Dad was more realistic, as he commented, “The autism is still there…”

The research involved 25 children, 2 – 6 years old, who had banked cord blood available. “Significant improvements in children’s behavior were observed,” in the majority of children, and “were greater in children with higher baseline nonverbal intelligence quotients.”

“Assessment of adverse events across the 12-month period indicated that the treatment was safe and well tolerated,” claims the abstract. In fact, agitation was a common complaint, requiring additional medications, as the infusion was administered. The authors admitted, “As an uncontrolled open-label study, it is not possible to determine whether the observed behavioral changes were due to the treatment or reflect the natural course of development during the preschool period.”

Discussion
When considering such an extreme treatment, the primary driving force should be the child’s degree of involvement with their developmental challenges. If your youngster is proceeding on an acceptable trajectory, 1) Is it worth the known, and unknown, risks? and, 2) What improvements are you actually seeking? In this study, as in other successful biomedical protocols, the less-affected patients showed the best improvement.

This investigation was done under rigorous conditions by highly trained university personnel, and utilized the patients’ own cord blood. Do stem cell centers around the world offer a similar degree of confidence as regards cleanliness, safety, follow-up, or the ability to handle emergencies? Are outcomes the same when using fat cells that have been turned into stem cells (explained in my previous blogs on this topic)?

The type of autism has got to be a factor, as well. Would a patient with a significant chromosomal variation or metabolic disease, for example, experience the same improvement?

On a positive note, it is encouraging to observe that the conventional research community implicitly concurs that successful treatment involves “modulating inflammatory processes in the brain addressing the reduction of body inflammation to improve ASD.”

Conclusion
We all wish to see a real breakthrough in autism treatment. It appears that stem cell therapy may represent a significant advance. But, that is all that it will represent. Children will still have yeast, and need follow-up labs, and ABA, and Speech therapy. Stem cell intervention seems to represent another, maybe better, certainly more costly, alternative protocol.

Thankfully, Phase II, a randomized, controlled study to assess efficacy, is now underway.

Seeking Real Autism Awareness

Saturday, April 1st, 2017

It’s the time of year for Spring walks, fundraisers, and other events to promote autism awareness. Heartwarming stories are featured in social and news media.

This is my wish list for true mindfulness of this 21st century childhood disorder.

A good start would be general acceptance that ASD is not ‘retardation’ dressed in modern nomenclature. Intellectual Disability is an even less precise diagnosis. And, most autistic people possess normal intelligence.

The public demonstrates increased understanding, and empathy, for families who experience this disability. There is no need to chastise the mom of a kid who is experiencing a meltdown at Walmart.

There should be general agreement that Hollywood’s interpretation of people with ASD is one-sided, at best.

We’ll know that we’re at the ‘next step’ when people stop asking, “Can you really get better from autism?” This is especially true for professionals.

Doctors need to buckle down, get their heads out of the sand, and take the time to learn about this condition. As the population ages, general practitioners, specialists, and sub-specialists will all need to understand how to care for such patients.

Research institutions recognize awareness by fulfilling their obligation to expand into every area of this epidemic. Professors willing to employ twenty-first century thinking can make a big difference.

Schools, already admittedly taxed by the demands of an evolving neuro-diverse student body, make a point of searching for improved means to address this growing population of our special needs population, as well.

Public servants can display their understanding by offering courses, services and information regarding appropriate response to citizens who react in an unfamiliar, or unexpected manner.

Choosing a career in one of the occupations that addresses the specific issues experienced by so many peers (or, even their own family) would be a worthy indication that young people are getting the message. Occupational, physical, speech, and behavioral skills are already valuable, sought-after professions.

From this doctor’s examining chair, real autism awareness is when my patients actually become aware. It is difficult to adequately express my satisfaction, and appreciation, when a mom writes about her kid who munched his first French fry, a toddler taking her first steps, or a child who says, “I love you.”

A(nother) Laboratory Test(s) for Autism

Sunday, March 19th, 2017

A key piece of the autism puzzle appears to have been confirmed in an article published this week in the Public Library of Science Open Access Journal, Computational Biology. The title of the article is Classification and adaptive behavior prediction of children with autism spectrum disorder based upon multivariate data analysis of markers of oxidative stress and DNA methylation.

The news has already been reported in popular media as “A Blood Test for Autism“. Here is my clinical interpretation.

The Study
The data was collected from patients in previous studies, and included 83 children, aged 3-10 years, with ASD. Utilizing very dense, complicated statistics that were based on biochemical laboratory data, researchers identified neurotypical vs. autistic individuals, who already had the diagnosis, based on conventional developmental testing.

The chosen pathways evaluated abnormalities in methylation, an epigenetic function, and detoxification.

Specificity and sensitivity were very reliable, “96.1% of all neurotypical participants being correctly identified as such while still correctly identifying 97.6% of the ASD cohort.”

Discussion
Contrary to what the headlines proclaim, this is not a single test; it’s research material that is based on a number of not-yet-readily-available laboratory findings.

The biomarkers represent a final common pathway, not necessarily a cause. Although the data correlated with autism ‘scores’, it really wasn’t meant to discriminate for the various kinds of developmental challenges, such as those children who are mostly aggressive, immune, apraxic, or suffer gastrointestinal abnormalities.

Such an analysis begs the question, “Can it be used for prospective improvement – to follow course of the condition?”

Conclusion
The modern epidemic of childhood autism is extremely complicated and difficult to pin down for research purposes. This study renders a modern means to evaluate a myriad of variables. The metabolic pathways under scrutiny represent a confirmation of the roles of genes and toxins.

As with other ‘earliest diagnosis’ studies, this paper serves to solidify the concept that earlier diagnosis should lead to earlier interventions, with improved outcomes.

For those of us who are practicing ‘alternative’ medicine, it is comforting to rediscover that the treatments included in our modern arsenal of biomedical protocols are consistent with these findings.

Recent Research about MRIs for Autism

Sunday, February 26th, 2017

Since the outbreak of autism, various attempts have been made to utilize modern imaging techniques to provide a more precise diagnosis. Here are two recent stories that warrant recognition and comment.

Relationship between brain stem volume and aggression in children diagnosed with autism spectrum disorder is not the first of its kind to describe an inverse correlation between the size of that part of the central nervous system and ASD. However, it is the first to possibly relate increased aggression with a measurable parameter.

One expert describes, “The brain stem serves as a bridge in the nervous system. All the fibers that go from the body to the brain and vice versa go through the brain stem. It sits at the top of the spinal column in the center of the brain… handles basic functions like breathing, swallowing, heart rate, blood pressure, sleeping and vomiting. The brain stem does not play a part in higher cognitive functions…”

The authors concluded, “Understanding brain differences in individuals with ASD who engage in aggressive behavior from those with ASD who do not can inform treatment approaches.” Indeed, disruptive behaviors describe a type of autism that is particularly difficult to address, and may even require potent medications.

The second article was Early brain development in infants at high risk for autism spectrum disorder, in Nature. The research revealed that surface area enlargement between 6 and 12 months precedes brain volume overgrowth observed between 12 and 24 months, which was linked to the emergence and severity of autistic social deficits. “These findings demonstrate that early brain changes occur during the period in which autistic behaviors are first emerging.”

The good
Both investigations serve to encourage the idea that timely detection leads to earlier intervention, which leads to improved outcomes. Even that obvious fact continues to be debated in some forums.

The bad
These studies are descriptive, and so they do not provide answers about cause and effect, form as relates to function, underlying genetic, nutritional or toxic states. There are many presentations of the condition, and research generally tries to get as homogeneous a group as possible – perhaps not representative of a larger group. More information is required to deduce practicality or therapeutic intervention.

The ugly
Emily Willingham, ‘science’ writer at Forbes.com, used the latter study to ‘prove’ and promote her vaccines-are-safe-for-all-kids campaign. Not a word about ‘shots’ was mentioned in the entire article, and this pro-inoculation zealot found a way to insert that thought into unsuspecting readers, in her piece entitled, “An Unexpected Takeaway From The Early Autism Diagnosis Study”. Yep, Em, that was unexpected!

Conclusion
One investigation delineated decreased brain size in one region, and the other demonstrated increased overall brain volume. A recent paper about neuro-imaging technology offered this advice: “… heterogeneous and definitive neural correlates in ASD have yet to be identified… findings from multiple independent neuroimaging meta-analyses in ASD appear discrepant…”

Such research represents further attempts to explain the medical issues. This should encourage other universities and research institutions to explore these topics, as well.

As is frequently the case, for now, the use of MRI technology to elucidate the pathophysiology and diagnosis of ASD deserves further study.

What to Expect from Biomedical Treatment for Autism and ADHD

Tuesday, February 21st, 2017

As in any medical condition, it is entirely fair for parents to inquire about the timing of improvements, after undertaking biomedical intervention to improve signs and symptoms in their children who are affected with ASD. “How will we know if it’s working? When will my child get better?”

Factors affecting speed of recovery
How severely the child scores, according a standardized test for autism, is a major factor in assessing the time it may take for reversal of symptoms. For those in denial, this can be a wake-up call. For the parent who ‘already knew’, it represents a starting point. The time that it will take to observe improvement is generally proportional; from mildly affected to very disturbed development, taking from 6 months to many years until improvement is noted.

Perhaps interestingly, children who score very ‘low’ (few autistic characteristics) may turn out to take more time than might be expected. That could be due to the mysterious nature of their particular developmental delay, and ‘putting our finger’ on how to address individual obstacles takes investigation and various trials.

The degree of a child’s inability to communicate – from the severity of speech apraxia to social isolation – is proportional to the time it will take for advancement. Whether due to biomedical intervention, or just maturation, it becomes extremely worrisome if this achievement takes more than 18 months. After initiating biomedical intervention, kids who simply begin to even copy the therapist will make faster gains.

Self-injurious behaviors and aggression greatly impede advancement in all domains. Such conduct is frequently gut-related, so a thorough workup and effective treatment should take precedence over any other interventions. The time it takes to get this system under control is predictive of speedier success.

Factors not necessarily related to timing of improvement
Intelligence is not in question for most patients. In fact, it seems that the brightest kids are the most likely to manipulate their family and therapists, sometimes slowing down their own improvement. Often, behavioral intervention (of some type) is key to achieving compliance and self-control.

Sensory issues may continue for many years, even after the children are mostly ‘better’. In fact, this may be the lingering issue for which parents seek treatment, and a major cause of inattention and social anxiety.

Immaturity is common, leading to tantrums and issues with self-control, and proceeds slower than neurotypical children. Peer pressure from role models and family members accelerates this troublesome problem.

Discussion
It is sometimes difficult to get our heads around the chronicity of this developmental condition. All children experience good days/ bad days; it appears exaggerated with ASD, and some medical problems recur (yeast, e.g.).

When first diagnosed, if a parent could be certain that their child may only experience leftover sensory, hyperactive, or focus issues, they would probably be okay with that future. Not all patients suffer even those lingering difficulties.

Many families have witnessed accelerated development resulting from biomedical intervention. Parents, teachers, and even doctors will avow visible progress.

Conclusion
Autism is a collection of conditions that emanate from a variety of sources. As the diagnosis becomes more precise, outcomes will be based on information, such as genetics, metabolism, and immune function, and expected outcomes will become more accurate, as well.

I advise parents to watch for little goals.  ‘Recovery’, ‘reversal’, ‘optimal outcome’, ‘normal’ are journeys that begin with small steps.

Frustrating as it may be, regardless of speed, it is the sustained, forward trajectory of development that appears to be of upmost importance as parents consider, “Will my child make it?”

Fecal Transplants and Autism Therapies

Sunday, January 29th, 2017

Recent media attention about a study involving a small group of children with ASD, who were treated with a specific protocol that included fecal transplantation, has spawned a slew of questions about this complicated protocol.
TheAutismDoctor response (so far):

What do these other autism therapies have in common?

•Probiotics – healthy bacteria (and, sometimes yeast).
•Prebiotics – food that fosters better bacteria.
•Special diets- nourishment that helps to reduce toxins, bad bacteria, or yeast.
Helminth therapy – administering live intestinal parasites into a patient’s stomach to reset the micro-biome.
Digestive enzymes – fostering more complete breakdown of foodstuff. This includes CM-AT powder; an experimental protocol utilizing “… a proprietary enzyme that is designed as a granulated powder taken three times daily.”
Turmeric, resveratrol, acai, and other antioxidants.
•Anti-fungal and antibacterial medications and supplements.

RIGHT! They all contribute to improved gastrointestinal health.

What else do they have in common?

•Physicians who explore and treat the enteric system to reduce negative behaviors know the success of such a protocol. However, this view is not a popular subject in the scientific literature, nor commonly accepted by the conventional medical community.
•Such interventions are generally short lived, with frequent recurrences.
•Improvements may seem to diminish with subsequent treatment.

Even hyperbaric oxygen therapy, stem cell therapy, chlorine dioxide, and chemical chelation may achieve their gains through this pathway.

How do they differ?

•Some protocols make some patients better, some have no effect, some produce adverse effects.
•Some are relatively inexpensive, other may cost thousands of dollars.
•They achieve change by a variety of biome-altering methods.

What is a Fecal transplant?

•Simply put, this treatment involves taking fecal material from a healthy individual, and transferring it into another individual’s intestines, by a variety of means, including pills, naso-gastric tubes, and colonoscopy. The procedure was first documented more than 60 years ago.

•For severe gastrointestinal problems in adults, the procedure was reviewed earlier in this century in the journal Clinical Gastroenterology. “This form of therapy has now reached primetime and should be used in any patient that has been resistant to therapy of recurrent attacks.”

What was this research?

•18 children, aged 7-16 years, with ASD and moderate to severe GI problems, were subjected to a “… modified <fecal microbiota transfer> protocol… involved 14 days of oral <antibiotic> treatment followed by… fasting with bowel cleansing, then repopulating gut microbiota by administering a high initial dose of Standardized Human Gut Microbiota… either orally or rectally followed by daily, lower maintenance oral doses with <antacids> for 7–8 weeks… Participants were followed for an additional 8 weeks after treatment ended…”

•”Substantial changes in GI and ASD symptoms were observed…  and those improvements were maintained after 8 weeks of no treatment… Only two… were designated as non-responders…”

Discussion
The authors in this paper noted that, “… it appears likely that extended treatment… over many weeks, as done in this study, is necessary to observe these benefits.” They concluded that, “While this study was an open-label trial that is subject to placebo effects, these results are promising and provide a crucial step for understanding the connection between the microbiome and ASD. A randomized, double-blind, placebo-controlled study is the next step to investigate the value of Microbiota Transfer Therapy in treating children with ASD and GI problems.”

For the foreseeable future, Fecal Microbiota Transplantation (FMT) will not be covered under health insurance. Presently, the cost for eradication of Clostridia difficile (a common organism that causes severe bowel disease) exceeds $3000 for short term treatment.

Conclusions
FMT represents a promising remedy for many of the disruptive behaviors that patients may exhibit. At the very least, it assists in heightening the awareness of the gut-brain connection, especially in ASD.

While parents are all desperate for a cure, this may simply represent another link in the chain that points to gut health as a major contributor of signs and symptoms involved in one type of autism. More research about this therapy needs to be undertaken before safety and efficacy can be assured.

Because of the required resources and time, it will take a while for this treatment to take hold, even by doctors who specialize in this type of patient.

As an increasing number of parents wish to explore this option, with practitioners who are available to work with them, valuable information will be gained for the multitude of other families who seek relief from this modern developmental disorder.

12 Days of Autism Christmas

Friday, December 23rd, 2016

On the first day of Christmas, my practice sent to me…

A bunch of kids who got better from ASD.

On the twelfth day of Christmas, my practice sent to me…

12 Who started speaking

 11 Picky eaters

  10 Toe walkers

    9 Happy flappers

     8 From foreign countries

      7 Poopy pictures

       6 Sensory seekers

    — 5 With ADHD

         4 Terrible tantrums

          3 Bad biomes

           2 Red rashes

and a bunch of kids who got better from ASD 😉

Happy Holidays, Everyone

With much love and hope from Dr. Udell
and the staff at The Child Development Center©

Autism vs. Insurance

Sunday, November 13th, 2016

insurance4If insurance is a wager to cover the expenses incurred due to some rare, catastrophic event, then health insurance is only a distant cousin. It’s betting how much you will owe hospitals and doctors when you are un-well. For people who will never get sick or injured, medical coverage is unnecessary.

However, for an increasing number of modern families, an autism diagnosis will become a reality. The lifetime costs range from ~$1.5M – $2.5M, or more. Actuaries know this, of course. Presently, and for the foreseeable future, to the extent that is ‘allowed’, coverage will be significantly limited for medical conditions that fall under the ASD banner. It’s the insurance business.

How Not to Cover an Autism Claim
An underlying principle is that, the longer it takes to pay, the more interest is generated on a company’s reserve dollars. Any excuse to deny, therefore, can improve profitability.

Since coverage is provided based on the type of diagnosis, the more specific and verifiable, the less likely likelihood of a disagreement about expected costs. Autism is neither a precise entity, nor can it be confirmed with scientific instruments.

Even the usual and customary therapies, such as ABA, OT, PT, and Speech&Language are disputed. Insurance plans have gone kicking and screaming into paying for those proven services. Plus, the practitioner must possess the credentials that are acceptable to the payor. Barriers are erected at each step along the way.

Getting reimbursed for a proper workup can be difficult. An MRI or EEG may be customary, but not a genetic test or food allergy panel. Successful patient outcomes are not as convincing as university research. Funding for a study on dietary effects on behavior based on laboratory evidence carries little profit motive.

For ASD, the primary on-label medications are very potent and potentially harmful. Due to formulary limitations based on cost, practitioners are even instructed to prescribe a more dangerous drug over others that might be better tolerated. More effective and less expensive supplements are not even considered.

The Folate Example
For over a decade, variations in the genes that propel an important metabolic pathway have been tied to problems in patients with autism. That has not deterred insurers from denying reimbursement to the accepted testing laboratories – and increasing charges for out-of-pocket expense.

Utilizing a relatively inexpensive supplement, a recent study has demonstrated, “…treatment with high-dose folinic acid for 12 weeks resulted in improvement in verbal communication as compared with placebo…”

Not surprisingly, insurance companies refuse to pay for this medicine, either.

Conclusions
Families of patients with ASD already know that they must pay out of pocket for many of the treatments. If they work great, it’s worth it.

As new insurance products take shape, it may be a good opportunity to lobby nascent companies for improved coverage of all autism treatments that show validity. Showing a cost savings matters more to companies that intend to stick with an insured.

Measuring markers of autism, such as folic acid metabolites, for diagnosis and results of treatment, will go a long way toward discovering – and getting reimbursed for – newer interventions.

The role of prevention cannot be overemphasized. Our external and internal environments must be scrutinized. More appropriate standards created and implemented for safe food, air, and water, should reduce the cost of all health insurance.

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Brian D. Udell MD
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