How many diagnose's have been changed after initial 1?

I was curious to know how many diagnose's have been changed since their child's 1st initial diagnoses? Did they get better or worse? Did the test's fail or what? If anyone would like to answer.

Thanks

Hi blessedmom.

This is one area that IAN has a great deal of data on. For every person on the autism spectrum participating in IAN, we ask "What was your FIRST ASD diagnosis?" and "What is your CURRENT ASD diagnosis?" We can see, by looking at this data, which diagnoses are most stable, and which ones are not. There is a researcher using IAN data to write a paper about this - so more on this when it's published!

It is clear that 25% of the children participating in IAN ended up with a different ASD diagnosis than they got at first.

What we'd expect to see (and we'll see if we do!) is that Autism and Asperger's are fairly stable diagnoses. PDD-NOS, on the other hand, we'd expect to be far less stable, with many children who get that initial diagnosis (or generic "ASD" or "PDD") receiving a different ASD diagnosis later. That is because Autism and Asperger's are described in great detail in the DSM-IV (the psychiatric guidebook which describes these conditions). PDD-NOS, on the other hand, is a bit of a grab-bag, as you can read about in our article on PDD-NOS, here: http://www.iancommunity.org/cs/about_asds/pddnos

Why would a diagnosis change? There are many reasons. Maybe the first evaluator was not as experienced or able/willing to give a label as the second. (Say the school district gave a generic ASD diagnosis, and then a psychiatrist gave Autism.) Maybe a child didn't quite meet all the criteria for Autism or Asperger's, so they got PDD-NOS, but then as they got older, the picture came into better focus. These are just a couple of possibilities.