Autism Registry Plans Averted (For Now)

The latest news is that the U.S. Department of Health and Human Services (HHS) has gone back on its statements to maintain an autism registry, but the bait-and-switch has already caused harm. Accessing private medical records for research without patient consent raises serious ethical concerns. Not to mention that HHS apparently meant to use these private medical records to demonstrate a causal link between vaccination and autism—austensibly to explain higher rates of autism diagnosis and discourage vaccinations. I am not a scientist, so take this with a grain of salt, but I think a more plausible explanation for higher rates of autism diagnosis is that we are now more aware of the diversity of presentations of autism and have access to better screening tools. For example, masking is a common autistic trait, especially in women. Masking may bypass diagnosis if a screening tool is not specifically looking for it.

The question whether to pursue an autism diagnosis is already complex. Adding additional complexity in pursuit of ethically questionable and politically motivated goals is harmful to the Autistic community and discourages open exploration of how neurology affects identity.