Monday, May 13, 2013



I know this is a controversial subject for some people within the CHARGE community but I would love to gather some more input. The subject of autism. I know some of our individuals with CHARGE have "autistic like tendencies" and others actually have the diagnosis. And others don't have the issues at all. I am aware of the research that says that the behaviors might "look" like autism but it's really more because of the sensory deficits, etc.

For a while, I thought it didn't really matter to explore the subject too much because he is who he is and how will yet another label/diagnosis help him?

As time went on though, I realized why not? Why not explore the diagnosis if it would help provide more understanding and awareness about Max's learning style and social/communication skills?

So the last few months we have been undergoing various evaluations and tests and sure enough, my little man appears to be on the spectrum. Our final meeting is next week and we will discuss everything in more detail.

I am the one who sought it out to learn more but I must admit, the reality of the diagnosis (not that it changes anything at all about who he is) hit me a little harder than expected. But what one doctor said made it more clear to me...she asked me about other individuals with CHARGE who have an expansive vocab similar to Max...of course the answer was yes. Then she asked if they use the vocab to communicate with others...and the answer was yes for many individuals. And that's where it helps to show us that something else is going on for Max. While he does have some social skills and PLENTY of words he knows (at least 300 signs), he really has little interest in communicating, commenting, etc. unless it's something he needs...i.e. "I want video/chocolate/cookie/walk". But never once in the nearly eight years of his life has he asked me a question, answered a question or commented. :(

Don't get me wrong...I feel soooo incredibly blessed that he has the communication he does have...but I must admit, this communication/social issue is harder for me than just about everything else with CHARGE. It would amazing to really know what Max wants...what he is thinking, feeling, hoping...what he would like to do tomorrow...what he did that day...anything.

Does anyone else have this situation with their family member? Any thoughts to share?

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