Last month, I took an Uber home from work and the driver started talking to me about his friend who has two young children diagnosed with severe autism. I told him I was diagnosed with what was formerly Asperger’s Syndrome at 15 and talked about my position with the Indiana Institute on Disability and Community where I speak to college students sharing both clinical knowledge and my personal experiences of living with an autism spectrum disorder and write for the monthly newsletter for the Indiana Resource Center for Autism.
A few minutes into our drive, he asked me: “What are your thoughts on the term “Self-Diagnosis of Autism”.
I told him that while our country has continued to see an increase in both the numbers of children and adults diagnosed with autism in recent years, the CDC now estimates as many as 1 in 36 children and 1 in 45 U.S. adults now have autism, and while it is certainly possible for a teen or adult to meet qualifications for an autism diagnosis as opposed to being diagnosed in childhood, there are a few things I always try to keep in mind when I hear the self-diagnosed autism come up in conversation.
First, autism is a neurodevelopmental disorder which is diagnosed based on observation of social behaviors, and while a checklist of symptoms on Tik Tok may indicate certain traits associated with autism that a person might have, a computerized checklist is not capable of observing social behavior or discussing a person’s behavior or tendencies with them, or a care provider. Furthermore, there are other diagnoses that may share some of the traits of autism, but I think until a person is seen for clinical evaluation by someone who has truly been trained in medicine and can make a definitive diagnosis, there is no guarantee his or her symptoms are actually related to autism. Another area of concern I have relating to self-diagnosed autism is that a self-diagnosis (i.e. just checking a checklist from a website) will not help the child or adult access supports and services the way a clinical evaluation can, which are helpful in treating autism and improving quality of life over the long term. I think while an online checklist can perhaps be an indicator to people that they might have autism or another related diagnosis, a true diagnosis of autism or any developmental disability should aways come from a licensed physician.
Nassim, A. (2024). My Thoughts on the Term “Self-Diagnosed Autism”