Patient’s mother advises physicians to listen to the whispers

photoby Jena Jake

I am the mother of a child with Autism, which — by default — makes me a major consumer of the healthcare system. Over the last twelve years of appointments (collecting various diagnoses in addition to Autism along the way) we have had some great care by kind, caring and compassionate doctors.

We have also received terrible care from doctors who cast our daughter aside because she carries the diagnosis of Autism. Overall, most doctors had their hearts in the right place and did a fine job of treating the obvious.  But what I want to focus on is the not so obvious.  What about “The Whispers?”

Symptoms that are off, but not way off, are what I call “The Whispers”.  For years my daughter has had blood work that shows her lymphocytes and neutrophils are too high.  Her levels are definitely above normal, but not high enough to be addressed seriously.  I often get the response “She must have just had a virus.” What the medical professionals never seem to want to take the time to understand is that this “virus” has been going on for years! When I try to explain this, I always get the same dismissive response, “The levels are not that high.”  I, as her mother, know that my daughter is not quite right and something is being missed.

I recently found that I am not the only one suspicious of her high levels.  In her book, “The New Autism Revolution,” Dr. Martha Herbert addresses “The Whispers.”  She notes that children on the spectrum with a series of symptoms are in a “gray zone” of not healthy, but not sick either.  Children with Autism commonly have suspicious inflammation that — to date — is not well documented in the medical or scientific literature.

What important clues are doctors missing by ignoring symptoms because they are not screaming out?

I, as a consumer of healthcare, understand that medicine is not a perfect science. I understand that medical professionals do not have all of the answers, nor do I expect any one medical professional to have all of the answers.

I, as the advocate of a special needs child, do expect all symptoms to be addressed, the not so obvious as well as the obvious. I also expect my daughter to be seen as a whole person, not just a diagnosis. There are exceptions to all diagnoses.

I want medical professionals to understand that when I am told that a chronic condition is not worrisome many times over, I do not feel better about it because multiple medical professionals have concurred. Instead, I feel dismissed multiple times over and become disillusioned with the medical community as a whole.

I respect a doctor who takes note of a whisper and admits plainly that they just don’t know. Even if we need to wait for more research to be available, it makes me feel validated to know that someone is actively listening to my concerns.

I am desperately looking to partner with a doctor for her care.  Developing a relationship of trust is the most important step in having an ongoing partnership. If I feel dismissed right out of the gate, the relationship is over before it even began.

Parents of special needs children are more informed than ever before. We hope that doctors are interested in keeping up with our pace.  If I recommend a book or an article that might provide new information to help solve the puzzle of my child’s care and I get a response of disinterest, then how can we partner?

It’s true what they say:  Patients don’t care about how much you know, until they know how much you care.

3542409Jena Jake, MA LAC is the mother of a daughter with Autism.  She holds a Masters degree in Professional Counseling and a Post-Masters credential in Psychological Counseling. Jena also runs a program called Buffers and Breakthroughs, designed to provide a means of coping to caregivers of individuals who have been diagnosed with special needs.