NVLD vs AS? and Disclosure
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| Mon, 03-03-2008 - 3:15pm |
How many of you have encountered the NVLD label ? Graham's actual dx was NVLD with Asperger's characteristics but from all the research I've done, I'd peg him as AS for sure. And that's the label I use when speaking of him; not many people know what NVLD is, more know about AS.
Our therapy clinic for OT, social work, and social group tends to want to use the NVLD label as in their minds AS is saying that he won't ever be able to function socially in an NT world and they don't want to 'limit his potential'. I love my son more than anything, but I truly believe that it will never be natural for him to 'mind read' the nuances and subtle cues that are the social lubricant in the NT world. Not to say that he won't be able to consciously behave in a more socially acceptable way if he chooses to when he's mature- I hope and pray. But it won't be like breathing, a natural unconscious ability for him.
My real question is this:
Have you/When did you/Will you disclose to your affected offspring the nature of their disability? What label will you use and how will you explain it?
I'm thinking that Graham, who is 9, is close to an age when knowing the nature of his disability would be helpful to him. It's an explanation for why he has a hard time at school other than he's 'BAD'. It gives him a community of people like himself . It's a tool he can use for self-understanding and reflection.
My feelings on this are heavily influenced by my own experience as a chronic depressive. I'm, thankfully, in remission now because of my hard-working psychiatrist. But my acceptance of my condition was a major turning point in my recovery. I just can't see myself never telling my son his diagnosis.
So what are your thoughts on this topic?
Drea

I agree, he is old enough to where he see's he's "different " than everyone else, but I'm sure you want him to look at his difference in a positive way.
Well for one I would start with his LD's.
I am thinking about telling my son before first grade, but have no idea how.
My kids were initially tentatively dx with NVLD by a psychologist (she'd told us definitely not AS) before the kids were tested at our local Children's Hospital's neuropysch dept and received their AS dx. A LOT of the stuff I read about NVLD was all linked to stuff about AS. It sounded to me like the two dx are very, very similar. Some of the literature I read indicated that even the doctors can't agree on what makes the difference between the two dx.
I agree with you that telling your son his diagnosis will be beneficial to him. My AS kids (9yo ds & 13yo dd) appreciate knowing why they're different. Like others, they already knew they were different, and knowing why really helped them feel better about themselves. I told my kids their suspected dx long before we had an actual dx. I personally feel like they ought to know as soon as they can understand.
I like the example someone else used of comparing AS to a learning disability. I hadn't thought of using that when explaining it to my kids (but I'm not sure whether they would have understood that analogy since they're not as familiar with what a LD is). I used the example of other acquaintances in the neighborhood who have disabilities (one deaf, one blind) but still perform everyday activities. They get accommodations to help them, but they're still very active, hard-working, involved human beings with full lives. We also have a girl at church with classic autism, so they were familiar with the term autism.
We made sure to focus on the kids' strengths, not just their disabilities. They appreciated hearing about various famous people past and present who have AS, such as Bill Gates. They can see that having a disability doesn't have to mean something negative.
Awhile back someone on this site referred us to the book "All Cats Have Asperger's Syndrome" by Kathy Hoopman(?) which I really liked. My kids already knew their dx at that point, but this book helped the kids to feel even better about the idea that all people have differences which should be valued. It's a book full of photos of cats in various poses with brief captions that help identify some of the strengths and struggles of people with Asperger's (for instance, they might not like being touched all the time -- like a cat; strong sense of smell; etc). It's also a good book for sharing with other people to help them understand why your child is different (and how that's a good thing).
I think Kathy Hoopman is also the author of "The Blue Bottle Mystery" and its sequel "Of Mice and Aliens" which are fictional stories about an 8(?) year old boy who is dx with Asperger's and some of the experiences he has. I don't know that my 9yo ds understood its relevance to him and his dx, but he enjoyed reading the books. I thought the opening chapter of the first book was very descriptive of the types of encounters I used to have with my ds before I understood his dx.
One final thought that just came to me (I'm always waaaayyy too wordy, sorry). Not long ago I heard Deborah Lipsky speak about AS, from an insider's perspective since she has AS. Her comment was that a lot of AS meltdowns occur as a result of not having enough information (I don't know that that's entirely accurate, but I see a lot of truth in the statement). In that case, giving your ds the extra information about who he is would be even more valuable.
Best wishes.
The only difference I could make out after really looking into NVLD and AS was that NVLD was supposed to have problems with visual perception of two dimensional drawings. Graham was drawing with perspective at age 4.
Thanks for all the tips about how to approach the topic and the book ideas. I'm kind of nervous about how to broach it. I'm waiting for a good opening, and dragging my feet about it. He's 9 but not really, IYKWIM. Still I"m starting to think the time should be soon.
Drea
Graham
Miles
Anson