Full Disclosure – Revisited

A few months ago, I wrote series of posts on the topic of disclosure of our children’s diagnoses of ASDs to themselves, their schools, and others. I advocated for full disclosure to our children, at the level they can understand.

I find myself struggling with following through on that.

My wife and I have been open with both our boys and we talk freely about ASDs. It’s been pretty simple up until now. While my youngest had his diagnosis change from autism and PDD-NOS at a young age, the older of the two always had a diagnosis of Aspergers. Until now. A recent evaluation led to a change in diagnosis to PDD-NOS.

Personally, I don’t get hung up on the differences between the various ASD diagnoses. There’s a lot of characteristics to consider and I believe as long as you can ‘get in the ballpark’, you’re on your way to helping and understanding.

However, 10 year old boys are not always so flexible. He’s talked to his class at school about Aspergers and has even been involved in media coverage of Aspergers. He also has a very clear understanding that he and his brother have different diagnoses. He can’t necessarily tell you what the difference is, but his sense of identity definitely includes the label of Aspergers and he knows that his brother’s includes PDD-NOS. I wonder how hard it will be for him to lose a name that he has associated with himself for so long. It is a loss. I’ve said in a previous rant, Aspergers is just a better term to identify with than PDD-NOS is. Not the diagnosis, just the term.

I have thoughts of not telling him for a while. The label really doesn’t mean much to anybody else and he’s going through some difficult times. We’re currently very focused on establishing some stability for him. Why do anything to impact the stability we’re trying to build?

I know myself well enough to predict how it will play out. I’ll choose disclosure, as I always have, and I will do all that I can to use it as an opportunity for learning and growth. We’ll talk about the different characteristics of Autism, how the labels overlap, and how they are somewhat artificial. And then I’ll tell him that if he want’s to still wants to use the term Aspergers in describing himself that it will be perfectly OK.

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2 Responses to Full Disclosure – Revisited

  1. Estee says:

    It’s a good question, this disclosure issue. It plays out with circumstance, context. Otherwise, I just couldn’t answer the question.

  2. This is a prime example of the concern I have with changing diagnosis. It seems that the professional community is under the impression that a person who has been taught to overcome some of their challenges can be cured of their original diagnosis. Unfortunately, this goes contrary to the studies that show a difference in brain structure and thought processing between neurotypical individuals and individuals with Autism. My belief is that once a person has been identified as having Autism, Asperger’s or any other PDD, the diagnosis sticks. The only exception would be if new evidence surfaces that shows them having a more sever PDD. As a parent, I would continue to allow my son to identify himself as someone with Asperger’s and not PDD-NOS.

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