I just skimmed the responses. The first one made me ragey, so I backed off.
My sister has 2 children - both with severe autism.
I knew something was off with her firstborn from a very early age. People did suggest, gently, to my sister that something was off - but she would not listen. It was not until he was well past the age when most kids start talking did she consider evaluation.
Her second son was diagnosed much quicker.
She has never been mean to my kids, but her DH did question whether my youngest might have autism when she was about 2. It came out of the blue, she has no signs of it whatsoever…..I honestly think it was a "misery loves company" sort of thing.
While my sister has never been mean to my kids (she is not a mean person) she was had unrealistic expectations of them and of other neutotypical children. Honestly, she expects a neurotypical 2 year old to be able to wait in line patiently "because they are neurotypical and you can explain things to them." It is not an issue now, but it was one for years.
Another issue I had, and one you will probably deal with if your nephew has any sort of a serious issue, is a sort of "survivors guilt". I can rarely vent to my sister about issues my kids are having - because - how dare I? My kids are neurotypical! Then I feel guilty for even feeling resentful that I can't vent.
The special needs board at MDC has not been a safe place for me to vent (although there are times I could have used it). I love MDC (look at my post count!) and can talk in most forums about most things - but I cannot talk about how autism affects my extended family on this forum. It is too much of a hot topic - and once again, who the heck am I to be complaining? I have found real life friends and family to be better support.
Serious diagnosis absolutely affects other family members. I don't think we acknowledge it enough. There is no support for it - because how dare you grieve or talk about the situation- your kids are fine!
As per how to support someone…what my sister has seemed to need most over the years is babysitting. She needs someone to watch her kids a bit so she can recharge her batteries. We have also worked hard at including her in any family events/outings. We used to include her children, but frankly, they are aggressive and destroy things, so that has fallen by the wayside. We don't exclude them - but I don't think she wants to bring them out either, so the topic does not come up much. She has not really be open to other kinds of support. She does like to vent on the phone about issues (usually related to school or programs) and I let her. I do not bring up my own stuff much - I am a listening ear. It is a role I am ok with. To be honest, I wish I had offered less advice in the early years - my heart was absolutely in the right place and my sister did seem so defeated- but I didn't pick up the cues that she really wasn't interested in hearing it. I bet she felt bombarded by advice from everywhere, and it might have been nice if I were more sensitive and did not contribute to that. I think I will call her and apologise.
Edited by purslaine - 1/27/12 at 9:23am