Now before anyone reading this thinks that I have anything against the people who help the autistic or the families of autistic children, I don’t.  What I am objecting to when it comes to the organization Autism Speaks is their statements about the prevalence of the condition.

This is a direct quote from the What is Autism page on their website, “Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness.” 

The last part of that quote is what I have issue with.  The science surrounding autism does not lend itself to any definitive statements about the increase in diagnosis.  Let me explain how that works.

In scientific research, there is a technique to evaluate the diagnostic tools used by scientists, psychologists, and researchers.  This is called inter-rater reliability.  This basically works by evaluating the agreement and reproduction of diagnosis and research between professionals.  In psychology, inter-rater reliability is measured on a scale from .0 to 1.  the closer to 1 that the IRR is, the more professionals are coming to the same conclusion.

I’ll use a hypothetical to explain how this works and what it translates to.  If the inter-rater reliability of a mental disorder was .8, that means that the vast majority of professionals agree with each other on the symptoms and diagnosis techniques of that disorder.  This means that the disorder is better understood by science than a disorder where the IRR is say .4 or lower.  So what is the IRR of autism?

According to this paper, which looks at these rates over many studies over large amounts of time, the inter-rater reliability of autism and autism spectrum ranges from .42 to .73 depending on the individuals that make the diagnosis, the year that the diagnosis was made, and the symptoms presented.  This creates a rough average of .575 according to this paper.  Now this is over time and with many variables.  However this still proves my point about the statements made by Autism Speaks.

As I said, I do not like how they represent the growing rate of diagnosis over time.  This is why.  The inter-rater reliability of autism has shown itself to be highly variable and fluctuating over time and over individual cases/studies.  This means that the diagnostic tools are inconclusive and more research is needed before science can say what is causing this growth with any certainty.   When Autism Speaks says that they know that the growing rate is only partially caused by a higher rate of recognition, they are miss-representing the facts.

Science can only create hypothesis as to why the diagnosis of autism has increased over the years.  When you look at the science, it could be any one of or combination of many different factors.

I support Autism Speaks and what they stand for.  They do so much in terms of helping people and raising awareness.  But when it comes to their presentation of the science surrounding autism, they really drop the ball.  This miss-information can lead to improper treatment of autistic children, alienation of the group from people who would support them, and further abuse from people who would use the improper information to further scams.

I hope that Autism Speaks can get some people on staff who will better their understanding of autism and help them relay the science to the public in a way that better educates and informs so that the people who need help can get the best help possible.