Why am I not getting better?
Updated: 5 days ago
As a parent and as a provider in a highly specialized field of neuroscience for 20 years, I believe passionately that two key components of good care for patients are educating based on peer-reviewed research and helping parents advocate appropriately for their children's medical needs. Knowledge is power, and it can help shift paradigms into more effective operating systems.
The way in which the United States medical system operates is heavily influenced by the business practices of insurance companies that often value company profits over the medical needs of patients. This means that patients are often subjected to a “backwards”
approach to medical care which can result in inefficient and ineffective treatment.
The adversarial nature of the healthcare system can easily be avoided. The result would be reduced costs for insurance companies, as well as better access to care and more efficient
treatment outcomes for patients.
By way of illustration, compare the way our healthcare system works to taking your vehicle in for service. Imagine the mechanic suggests a costly and time-consuming remedy for an annoying thumping sound in your engine, and that he does this without a full diagnostic evaluation. He urges you to let him change the engine to address the sound. Most of us would not accept such an absurd proposition. We would rather obtain a proper understanding of the problem before authorizing the mechanic to begin work.
Parents should take the same approach when it comes to their children! Too often we feel helpless when a doctor suggests a treatment based on a cursory review, and we accept and acquiesce to that treatment. This is what’s known as the “black box” approach.
For example, if we see a doctor because our child is quacking like a duck, the doctor looks at a book of symptoms and informs us that a child that quacks like a duck must be a duck. While this example is silly, it reflects what parents experience in a doctor’s office. This approach can lead to years or even decades of ineffective treatment and result in an unclear treatment plan. It can also lead to little to no change or improvement in functioning, and minimal to no tracking of changes over time to modify the treatment approach.
Autism and many other conditions are often misdiagnosed as a result of this faulty symptom approach. It is true that parents may wonder what specific symptoms or group of symptoms are involved in order to address them in their children. However, focusing solely on symptoms to the exclusion of the complex history of the patient, including the developmental history, extensive functional neurocognitive pathways, medical history and other relevant information, perpetuates the problem.
It also demonstrates how attached our society is to this black box approach. Moreover, many symptoms of autism can actually be in the normal range of development and an appropriate part
of a child’s development and progression.
Looking only at the symptoms means we “miss the forest for the trees.” It can lead
to false positives, ineffective treatments and increased frustration on the part of
patients and doctors. It is also financially costly to both patients and the medical
Unfortunately, this “shotgun” approach to treatment is too common and
represents a fundamental flaw in our current approach to appropriate diagnosis
Neurocognitive pathways are complex and highly integrated. As a result, a specific
symptom or group of symptoms can mimic a wide range of abnormalities or even
normal aspects of functioning. Consequently, providers who take such a cursory
approach are often led in the wrong direction.
What can we do as parents to get the best treatment for our children?
We must advocate for the best care and petition our policy makers and insurance companies
to focus on the proper medical needs of patients rather than just on profit margins.
After all, good patient care is less costly in the long run. As parents, we should
educate ourselves. Question what you are being told. Read research and become
educated and better informed.
Seek out providers who do not adopt this “black box” or “shotgun” approach to care, but who base treatments on comprehensive and objective results.
By doing so, we can achieve a balance that incorporates appropriate objective, comprehensive and holistic evaluations to initiate and guide treatment, rather than struggling for years with care that simply does not work. Making such a change is up to all of us.