I am just coming back from an Autism Research Institute Think Tank. I was happy to see many old friends there and to make new ones. The Think Tank has a nondisclosure agreement which does not allow me to disclose details as to any of the presentations or expand on the discussions. This means that unfortunately, I will have to sidestep any of the information I gained while there.
I have been asked to give my opinion on the recent CDC report of an increased prevalence of autism among a select cohort of children within our population. I do believe that the increase in prevalence is real. My own practice and contact with diagnosed individuals extends back to the late 1970’s while performing a mandatory rotation in Pediatrics during my medical school years. It was then that I saw my first child with a diagnosis of autism. My next patient would have to wait several years. Textbooks at the time described the condition as rare, probably only 1 in 10,000 children being so affected. Indeed, I remember reading that the condition was so infrequent that, statistically speaking, I could expect to see only 2 children with the diagnosis during my whole career. This has dramatically changed over the past few decades and can’t be explained away by an expansion in diagnostic criteria or increased awareness. People performing the latest CDC screenings are the same who performed the previous screening, and the ones before that. Neither their perception of the condition nor diagnostic criteria have changed in the last few years. Still, for those people who like data rather than personal opinions, they can read the literature and examine studies such as those coming from the MIND Institute and Irva Hertz-Picciotto. As an aside, I was able to review the records from a state institution in Kentucky whose patients were wards of the state. The patients, both males and females, stayed there from childhood. When I visited the institution, the youngest inmate was in his 40’s as the institution stopped accepting patients years ago. From the many records that we were allowed to examine we could only establish a diagnosis of autism (or change the same from another diagnosis) in about 10 cases, a very small minority of the total. A long time ago, with present day criteria, you had fewer patients with the diagnosis.
I think that our country is facing a health crisis in regards to autism. I could say the same thing about other pressing health problems like gun violence (13,000 deaths per year), suicide (22,000 deaths per year), and opioid addiction (59,000 death per year). Previously I argued that other institutions besides the CDC should be tracking the prevalence (How to follow the rising prevalence rates of autism: an epidemic or a health-related disaster?). However, I do not belittle the role of the CDC. Their work gave rise to laws for protecting the population from the risks of smoking and driving without wearing seat belts. If I have criticisms about the CDC is that they are markedly conservative in their explanations and recommendations. I am not sure if this has all to do with appeasement of the Neurodiversity Community and thus avoiding the use of the word “prevention”. However, when dealing with epidemics, prevention seems to be the alternative of choice when looking to the future. When considering prevention some key initiatives of federal institutions should be identifying the population at risk, researching mechanisms to limit exposure, and minimizing the hazards related to exposure of risk factors- be it environmental or genetic. Ignorance kills and that is the state of knowledge as of present. Unfortunately, the federal government and other funding institutions have seemingly disregarded these initiatives in favor of funding studies (e.g., genetics) that have no bearing on improving the life of patients. On those occasions when there has been a possibility to change this status quo, funding committees are flooded with Neurodiversity proponents that challenge both research and progress. It is sad to say that I do not foresee major changes in the near future.