Friday, December 27, 2013

Autism and Parental Rights against a Doctor's God Complex

Justina's parents have been stripped of custody because doctors don't understand her medical condition.
There’s a strange case unfolding now at Boston Children’s Hospital (BCH).  Justina Pelletier, a 15 year old girl from Connecticut, has essentially been held prisoner in a locked psychiatric ward at the hospital since February when her parents took her to BCH because she had severe flu symptoms.  Justina had been previously diagnosed with a mitochondrial disorder—something many of us autism parents are familiar with.  Although the diagnosis came from doctors at Tufts, hardly a fly-by-night medical institution—a resident at BCH instead diagnosed her with “Somatoform Disorder”, a form of mental illness where physical symptoms cannot be traced back to any physical cause.

Doctors at BCH determined that Justina was the victim of “medical child abuse”, alleging Justina’s parents were subjecting the girl to unnecessary treatments while denying her proper psychiatric care. When her parents disagreed with the somatoform diagnosis, the hospital called in the Massachusetts Department of Children and Families (DCF) and her parents lost custody to the state.  Justina remains in the locked psychiatric ward at BCH called “Bader 5”, and her condition has deteriorated to a point where she can no longer walk.  She is allowed only a one-hour supervised visit with her parents once per week. Her iPad and cell phone were confiscated by the hospital so she can have no unmonitored contact with the outside world. 
The "treatment plan" devised by BCH forbids her parents from getting a second opinion.
DCF gave the Pelletiers a “service plan” that listed the steps they would have to take for the agency to consider returning custody of Justina.  “Parents must acknowledge and demonstrate an understanding of Justina’s medical and psychiatric needs as well as her emotional needs,” the document stipulated, “including an understanding of her diagnosis of somatoform disorder.”  It further restricts the parents, forbidding them to “call in consult teams or second opinions”.  Does this sound like an institution seeking to provide the very best care for its patients or one where doctors’ egos dictate treatment?

Although one of Justina’s sisters has mitochondrial disorder, which does have a genetic component, BCH is so confident in their diagnosis of somatoform disorder that they will not allow Dr. Mark Korson, the Chief of Metabolism at Tufts who made the original diagnosis of mitochondrial disorder to further participate in her care.

Dr. Korson has written to Justina’s court-appointed attorney, and has stressed there are no empirical tests to support a psychiatric diagnosis of somatoform disorder, writing, “It is a clinical hunch…a best guess…So now I am writing because it feels like Justina’s treatment team is out to prove the diagnosis at all costs.”
Another girl was "imprisoned" in the locked psych ward at BCH when her medical diagnosis was not understood by doctors.
Sadly, this case is not an isolated incident.  The day before Justina was moved into Bader 5, another teenage girl named Elizabeth Wray from upstate New York was finally discharged after a 6-month stay in this same ward while in state custody.  In Elizabeth’s case, she had a diagnosis of PANDAS, which is also a disorder relatively unknown to mainstream medicine.   PANDAS is an autoimmune neuropsychiatric disorder that causes Obsessive Compulsive symptoms, and like mitochondrial disorder is also not uncommon in autistic children.

In Elizabeth’s case, there was also a dispute with BCH as whether her problems were physical or psychiatric.  As in Justina’s case, allegations of medical interference and medical child abuse were filed against Elizabeth’s parents by DCF and the state took custody.  The same representative from the BCH psychiatry service who pushed to change Justina’s diagnosis to somatoform disorder also played a key role in Elizabeth’s case. 

The resolution in Elizabeth’s case finally came when her care was moved to a team at Massachusetts General Hospital and her parents agreed to get an apartment in Boston—not a small sacrifice.  How is it that the state of Massachusetts can take custody of a child from New York or Connecticut?
It seems too strange to be true, but these cases are very real.
This seems almost like a Twilight Zone episode, it’s so bizarre.  Parents take their child to the hospital for care for medical conditions, but doctors there are unfamiliar with these real physical disorders.  Because of their medical ignorance and enormous egos, they diagnose the children with psychiatric problems, accuse the parents of child abuse if they disagree and strip them of custody.  I find it scary that when doctors aren’t able to diagnose a condition, the fallback is to diagnose patients or their parents with mental illness…and beyond that, they are able to have parents charged with “Medical Neglect” or child abuse.

Parents of autistic children have run up against these types of allegations and in some cases have been slapped with a “Munchausen’s By Proxy” or a “Factitious Disorder By Proxy” diagnosis, whereby parents are accused of deliberate harm to their children to cause sickness, so the parent/s can get attention for themselves.  Because of mainstream medicine’s ignorance of autism and the medical conditions that go hand-in-hand with it, doctors do not understand the underlying reasons for restricted diets, supplements, chelation therapy, and other treatments and believe them to be detrimental to the child at best, and abusive at worst. 

See to learn how doctors can trample your rights
A family in Arizona had their five ASD children removed from their home at gunpoint on the suspicion they had falsely claimed the children had autism along with mitochondrial disorders, gut problems, heavy metal toxicity, food allergies and MTHFR (a genetic mutation that prevents the body from properly methylating {detoxifying} itself).  Many autistic children share these problems—my own son included. 

As I’ve previously written, mainstream medicine is just not that interested in learning about autism, believing it to be a form of mental illness that is best treated with powerful psychotropic drugs.  Parents that have seen clear regression or illnesses result after vaccination have declined additional vaccines; this is construed by doctors to be “neglect” by “failing to protect” their children.  Parents questioning a doctor’s course of treatment can result in threats—or action—to remove children from their parent’s custody.
It seems powerful drugs are mainstream medicine's course of treatment for everything.
Although Ryan has a general pediatrician, she knows very little about autism and tends to think along the lines of mainstream medicine.  Ryan gets most of his care from an autism specialist whose practice is 2500 miles away in Oregon.  I know he understands Ryan’s symptoms are real and not something we have fabricated for attention.  I know he realizes Ryan needs a restricted diet for multiple food allergies and that placing a child on a GFCF diet is not “deprivation” or even “dangerous”, as if Wonder Bread has the nutritional value of broccoli.  Ryan’s doctor knows an MTHFR mutation (which Ryan has been genetically tested for) indicates B12 supplements are beneficial…

But I wonder what would happen if we had to take Ryan to an emergency room here on Oahu and happened upon a doctor who like most doctors, knows little to nothing about autism.  Would we be accused of the same sorts of things other parents of children with little-understood illnesses have faced?  Could Ryan be taken from us and placed in foster care, as happened with the children in Arizona?  
A "mental illness" some physicians suffer from...
Our society has elevated the status of physicians to god-like, as if they are infallible and medicine is all-knowing.  A previously unknown tendon was just discovered last month and yet there is an assumption doctors know all there is to know about the human body and illness.  If a physical diagnosis cannot be made by a doctor, it must be mental illness on the part of the patient or their family.  Questioning a diagnosis or requesting a second opinion can result in disastrous results for children and their families.

Just ask Justina Pelletier.  

Justina has spent her 15th birthday and Christmas in a locked pysch ward. Could this happen to your child?


  1. Horrible they took away parent and childs rights. This hospital is where a bad doctor named paul ofit works he makes millions on dangeroys vaccine products. Hope parents fight this.

  2. Aloha! Yes, truly horrible. The parents have been fighting but I don't believe she's back at home as of today's date. Very sad and scary at the same time.

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