“I think that your toddler may have some signs of autism. That’s a complicated subject. I’ll give you a referral for…”
Sound familiar? Was that the first time that you heard what you (or your spouse) had suspected from a medical professional?
This story is not meant merely to ventilate. Education is the goal. The challenge is how to get an uninterested, overworked, under-reimbursed, skeptical group of intelligent individuals to pay attention. We are standing in the middle of the childhood epidemic of our time, and the professionals continue to worry that there aren’t enough vaccinated kids! It’s insane.
That was the ventilation part.
At the first sign of a thyroid problem, e.g., a doctor doesn’t just send a patient straight to the endocrinologist. Rather, a baseline blood level is ordered, the results are evaluated in the light of the patient’s signs and symptoms. Next, the clinician is expected to explain all pertinent information, and refer to the most relevant specialist.
In the case of developmental delay, it seems that such a protocol is rarely followed. Even the expert (neurologist, or developmental pediatrician) seldom follows a prescribed course of action. An EEG and MRI? That depends on the family’s insurance status. Chromosomes or genetic testing? The usual advice is, if you aren’t having any more children, that won’t be necessary. Or, “The results won’t matter, anyway.”
External factors such as these should not be the determining factor in the 21st century workup of any patient, let alone a child whose growth is not proceeding in a normal fashion. A previous post details the top ten things all pediatricians should know about ASD. There is a workup to be done.
After a visit with the neuro-developmental doctor, a follow-up examination should take place with the ‘main’ practitioner, who ought to become the child’s medical advocate, rather than the parent. Pediatricians who believe that a family is ignorant or ill informed about the use of an off-label treatment need to learn more about all of the options, in order to assist the family in such decisions.
This year (Jan-Nov, 2016), there were eight articles in The Journal of Pediatrics specifically about ASD. That is less than one significant article per month in our major pediatric publication.
• Autism Spectrum Disorders and Metabolic Complications of Obesity
• Autism and antidepressant use in pregnancy
• New rapid autism screening test
• Applied Behavior Analysis as Treatment for Autism Spectrum Disorder
• To Screen or Not to Screen Universally for Autism is not the Question: Why the Task Force Got It Wrong
• Predictive Validity of the Modified Checklist for Autism in Toddlers (M-CHAT) Born Very Preterm
• Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability
• Comorbidity of Atopic Disorders with Autism Spectrum Disorder and Attention Deficit/Hyperactivity Disorder
The best way to address this present state of outworn medical attention is to fund and publish more research. This involves a paradigm shift in the diagnosis and therapy of ASD. The condition is of multifactorial origins and consists of a variety of signs and symptoms that can be ameliorated.
Pediatric residencies must adopt a new clinical rotation for this important malady. Practitioners who do not believe that, in complicated medical conditions, their role should be ‘captain of the ship’, might consider other medical specialties that do not carry this type of obligation.
It is simply not enough for a present-day pediatric clinician to exclaim, “Well, I don’t know much about autism.” The preferable, and intelligent answer should be, “I’m going to have to do a bit of study about this condition. They didn’t teach us about this in med school, but it seems important.”
Perhaps parents can use this essay to inspire/challenge your doctors to develop a modern attitude toward this medical mystery.