Wednesday, August 21, 2013

Disclaimer: On labels, autism and expediency

A quick disclaimer before leaping into the summer blog challenge:

Sammie has been diagnosed with a severe communication delay. He also has some traits that may result in a diagnosis of autism. At this time, under the advice of our doctors and neurologists, we are holding back on diagnosing officially for autism as there are some conditions that we would like to rule out first.  However, I am tired of people equating this decision with somehow not "coming to terms" with Sammie's condition or being otherwise in denial. I assure you that I have been fully aware of Sammie's delays for well over two years and that our resistence has been based on medical and psychological assessments, not on a fear of the word "autism".

To satisfy the masses and in order to save myself the wasted breath of going over this explanation ad nauseum with every person I talk to, Jason and I have started simply referring to Sammie's delays as "autism", for lack of better words. This changes nothing for Sammie (who is still not diagnosed with autism and will not be probably until after his 4th birthday) or for us, since we are able to access (either through the government or out of pocket) all the therapies, treatments and tools Sammie requires in order to succeed.

The only people who are changed by our using the term "autism" are those who are so intent on attaching a label to a three year old child that they can not comprehend why we would resist it. If having a label to call Sammie makes you feel better, more understanding or more aware of his reality, then that's cool I guess.  No skin off my back.

So, for the purpose of expediency let's just say "Sammie who has autism". But please bear in mind that this is not a fully accurate description.


Mama Zita


  1. I have a hard time understanding people who need that label on someone else's kid. It must be extremely frustrating, though it sounds like you and Jason have come to terms with it.

    Good luck and quick fingers over the next 30 days.

  2. It can definitely be frustrating. I try to remember that some people work better with consistent parameters and definitions. When push comes to shove, I find it is almost always well intentioned which helps to curb the frustrations. It also helps to remind myself that Sam comes by his quirks pretty fairly; Jason and I share a lot of his traits, including not always feeling the need to conform to social norms and expectations. Our approach is definitely "different", but we know it is the right one for him right now, which is all that matters.