Back from the specialist.

[Mayzoo]

My daughter's Neurosurgeon reviewed her case fully. He feels she "could" have autism secondary to Chiari, or she could have autism, and Chiari as seperate diagnosis. We won't know until she HAS to have her decompression surgery--this was delayed indefinately for now . He want's to avoid any hard diagnosis until she is maybe 7ish, since she is verbally delayed. She is 4.5 and speaks at a 24 mo level. On the whole, the doctor is not too concerned about her autism or delays right now. As long as she is progressing forward, the nsg is happy (and as long as we can control her pain and spams with medicine).

She is not cognitively impaired as far as we can tell. Just socially, and verbally. She is also not emotionally detatched. She has no concept of holidays...despite both hearing about them and watching tapes about them. She never asks about Christmas, birthdays...etc... Is this another "normal" aspect of autism by the way? I imagine it has to do with social skills/abilities.

Well, at least we have more answers now. I am very glad we went!!! 18 hour drive well worth it.

My whole focus, as far she is concerned, is her quality of life now and her ability to have as "normal" an adulthood as is possible for her.

[Lara]

Wow, that was a long drive, Mayzoo. I'm pleased you have some answers and that it was a helpful and hopeful appointment.

You said :"She has no concept of holidays...despite both hearing about them and watching tapes about them. She never asks about Christmas, birthdays...etc... Is this another "normal" aspect of autism by the way? I imagine it has to do with social skills/abilities."

I don't think everyone is the same, but it certainly is true for my son who has what was described by Tony Attwood as "classic Aspergers". He doesn't really seem to think or talk about those type of things at all. Certainly doesn't look forward to them. He very much lives in the moment although as he's got older he has begun to make plans rather more frequently which is a good thing. I've always seen it more as being this way... that those types of events like holidays and birthdays are not particularly important or significient to him in the whole scheme of things.

take care,
Lara

[LIZARD]

My son is 12 and has both autism and Chiari. He didn't start talking about Christmas until last year. All he really appreciates about it is that that's when he gets presents and when we go to VA (to see the rest of the family). I don't doubt that it's "within the norm" for our kids.


LIZARD