Standard of Care and Autism

Finding that your child has autism may cause intense emotions in some parents. Questions abound, there is not enough parent-friendly information, and doubts have a way of slowly creeping into their minds.  Parents will do research on the subject and look for advice from either authority figures or from family support organizations.  There is always the hope that something they may uncover will be of benefit to their children.  In effect, through research and life experiences many parents become “the experts” on the subject and end up teaching their physicians about current scientific trends and possible treatments.  Along this growth path, parents will self-reflect about their doubts and emotions.  Are they to blame? Was it something they did during pregnancy? Or, was it something the doctor did or failed to do?

The subject of malpratice has been approached repeatedly in the literature in regards to vaccinations.  The latest iteration was a complete legal misfire where a plaintiff’s lawsuit against Merck and Co. was dismissed in court. In his summary, the judge made it clear that there were no winners in the dispute:

Unfortunately, the [plaintiffs] (and uncounted other parent of children with ASD) have relied upon practitioners and researchers who peddled hope, not opinions grounded in science and medicine. My heart goes out to parents like the [plaintiffs] who struggle daily, emotionally and financially, to care for their children, but I  must decide cases based on the law and not sentiment” (Boranian, 2019).

In this blog I will guide my discussion away from vaccination to other aspects of the practice of medicine that research indicates may increase the risk for autism.   These aspects do not occupy the mind of the autism community but bear relevance in any discussion regarding potential  mechanisms of causation.  Those interested in additional information can read previous blogs in corticalchauvinism.org related to pitocin, folic acid and iron supplementation (see references below).

It has been noted that in utero exposure to valproic acid and other anticonvulsants increase the risk for manifesting autism or autistic-like traits postnatally. This has been noted for valproic acid used as a stand-alone medication or in combination with phenytoin. Some authors have suggested that the risk for fetal valproate syndrome is dosage dependent. This fact has been used to create an animal model (rat) of autism.  Another strong association to neuroembryological dysfunction comes from observations that approximately 5% of individuals exposed in utero to thalidomide develop autism. What appears interesting regarding this observation is that thalidomide patients who manifest autism also exhibit external ear abnormalities and an uncommon form of strabismus (Duane syndrome) but no malformations of their arms or legs (phocomelia). Timing of these “minor” malformations, along with the supposition that autism may have arisen during the same stage of development, suggests a time window of vulnerability early in gestation (20–24 days).  Similarly, bleeding and maternal infections (e.g., cytomegalovirus) during the second trimester have been associated with an increased risk for developing autism.

Although vaccinations have reduced the total number of congenital infections, the same are still a major problem in our society. Cytomegalovirus is the most common infection, affecting 1 in every 100-live births. Fortunately, the incidence of rubella has decreased to about 1 in 100,00 live births. Individuals with congenital rubella infections usually manifest hearing loss, ocular abnormalities (e.g., cataract, infantile glaucoma), and heart disease. Neurological manifestations include mental retardation, diminished muscular tone in the extremities, and small head size. Psychiatric manifestations include high rates of impulsivity, tantrums and self-injurious behaviors. Clinicians should keep the possibility of congenital rubella in mind if they ever examine an autistic patient with multiple congenital anomalies (see Casanova: Rubella, the MMR Vaccination and Autism, CorticalChauvinism.org)

A breakdown of red blood cells leads to increased levels of bilirubin in the blood.  The levels of bilirubin rise because the infant’s liver is immature and can’t get rid of this byproduct. For the most part, the skin will turn yellow (jaundice) but the color will slowly fade away in a few weeks.  In some rare cases, jaundice will lead to brain damage.  Researcher now believe that babies that develop jaundice are at a higher risk of receiving a diagnosis of autism during early childhood.  A recent study concluded that jaundice, when assessed by total serum bilirubin (TSB), was associated with ASD (Smith et al., 2011).

Medical malpractice is defined as the failure to do what a reasonably prudent physician would do under the same or similar circumstances.  It is also defined as a deviation from the standard of care.  The latter criteria does not demand perfection, nor can they be determined with the benefit of hindsight.  It is rather established by expert testimony or derived from learned treatsies, association guidelines and/or hospital policies. The plaintiff has the burden of proof and must prove their assertion by a “preponderance of evidence”.  Those cases that are easily won usually reflect egregious behavior on the part of the physician, one that was committed repeatedly but for which the physician was unwilling to institute corrective actions. The criteria are more lax in vaccination injuries where court cases are “designed to err on the side of compensating injury cases even when an evidence based analysis or consensus medical opinion would reject a causal relationship.”  In essence, in vaccination court, establishing the presence of a putative mechanism would be enough to render a verdict favoring the plaintiff.

There is little in terms of efforts at establishing a standard of care in ASD.  One has to admit that there are many thresholds to overcome and that the standards may even evolve with time as we fill gaps in knowledge.  Among many problems, autism is diagnosed based on subjective behavioral criteria. Treatment modalities vary according to symptom presentation and attending physician.  Indeed, the lack of established policies help explain the difficulties parents face when obtaining service, passing legislation, or when advocating for educational and health insurance reform.

There is an ethical and legal duty for professionals, along with parents, to define what is proper care in ASD. Without standard of care guidelines parents are eternally faced with doubts. They never know, within reasonable degree, what to expect in a medical, legal or educational setting. It is a pity that many national and federal organizations have wasted a lot of time and money defining clinical adornments to autism which bear little in terms of making an impact on the quality of life of patients.

I am often asked how I would change the panorama of health care and research in autism.  I think everybody accepts that the old system is crooked and doesn’t work.  Our children deserve better! In answer to these questions, no surprise, I would start by establishing evidence-based standard of care guidelines.   These guidelines should address several different problems: recognize and treat comorbidities, implement a standardized review of systems, institute diagnostic assessment and follow-ups within multidisciplinary health care setting, provide guidelines for appropriate referrals to specialists, avoid polypharmacy, and make available appropriate transition services.

References

Boranian S. Baseless vaccine autism lawsuit dismissed. Posted in Vaccines, April 4, 2019.

Casanova MF. Autism Updated: Symptoms, Treatments and Controversies. Amazon Publishing, 2019.

Casanova MF. Birth complications and autism. Corticalchauvinism.org.

Casanova MF. Folate and autism. Corticalchauvinism.org.

Casanova MF. Iron and auism. Corticalchauvinism.org.

Smin SB, Smith T, Wang H. Is neontal jaundice associated with autism spectrum disorders: a systemtic review. J Autism Dev Disord 41(11):1455-1463, 2011.

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One response to “Standard of Care and Autism

  1. Jaundice in autism was unknown for me until your post.By CDC April 9, 2018 stats 60% of babies have jaundice.Causes; preterm baby, east asian mediterranean decent, feeding difficulties, sibling with jaundice, bruising ( blood leaks ) and blood type (Rh or O ).
    Blood cell stasis and cavitation as described by M.Dyson in his study (Non Thermal Cellular Effects of Ultrasound, Anatomy Department Guy’s Hospital Medical School, London, British Journal of Cancer 1982 Mar; 5 : 165 – 171) can provide another possible cause for the breakdown of red blood cells by cavitation and the brain damages cause by the oxigen cut produced by the red blood cells stasis.
    Jaundice and autism could share a common tangential cause.Effects, jaundice and autism can appear separately or together.
    Jaundice 60% CDC is to high, it will be interesting to compare jaundice numbers before and after 1992.

    Liked by 1 person

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