Yesterday, I wrote about a new pronouncement from several major American health organizations that autism rates are now at 1:91 for young children and 1:100 overall. Nearly 40% of children with autism, according to the phone survey portion of the research, are no longer autistic - though they may have other issues such as ADHD or speech delays.
Having made this statement, spokespeople from the CDC and NIMH then worked hard to place those numbers in context, essentially casting doubt on their own findings.
There are good reasons for questioning the validity of those numbers. And many of those reasons are described in the comments made on yesterday's blog:
...we know that diagnostic stability is inversely related to age of diagnosis. We know that some children are being labeled autistic by school psychologists and the like in order to qualify for services. We also know that "losing a diagnosis" can mean no longer qualifying for services. Also, a child was considered to have ASD if a parent/ guardian reported that "a doctor or other health care provider" had ever said that the child had ASD and that the child currently had the condition. That's not the same as a medical diagnosis.
My son was never in the statistic count for autism dx, because they provided a speech IEP and not the educational. I had to provide the district his DX, prior to getting IU involved (autism support team) and educational goals. This is why the counts are so far off!!
...my severely autistic son has never had a dx
Given the many reasons why a child might have or not have an autism spectrum diagnosis, it's not very surprising that the numbers are wonky. What's more suprising is that that knowledge is not, apparently, driving the ways in which prevalence are being studied.
If you or your child are autistic, how do you know?
Did you receive an "official" medical diagnosis? An "educational" diagnosis? A multiple diagnosis (Aspergers and ADHD)? Were you self-diagnosed? Has the diagnosis been rechecked since it was originally made?
And - to what degree was an autism spectrum diagnosis actually required to get the services you needed?