5yo just diagnosed, what to tell 8yo NT-ish sibling?

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maglevsky
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10 Mar 2015, 2:34 pm

Recently our 5 year old on (soon 6) was diagnosed as "ASD, general developmental delay, symptoms of OCD".
I've written a bit about our situation here.

One of the many things we need to figure out now is what to tell his older sister. She has of course noticed that he does not behave the same as other kids his age and has often asked why - so far we had no real answer and usually told her he is "sensitive", and that she herself also had some fairly odd behavior when she was younger (though he is more odd than she was). She also noticed that I took a couple of mornings off work to take him to the assessment and we've not really explained to her what that was all about.

Any relevant experiences / recommendations?


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RemiBeaker
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11 Mar 2015, 4:51 am

May be you can read the books Inside Asperger's Looking Out and All Cats Have Asperger's Syndrome by Kathy Hoopmann.



YippySkippy
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11 Mar 2015, 6:57 am

Are you asking how to tell her, or whether to tell her?



maglevsky
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11 Mar 2015, 3:45 pm

Hey Yippy,
I'm asking what, not how or whether :)
Let me explain ... When she asks for the 100th time: "why does my brother do these weird things / why is he like that", we could of course say something like "Because he's autistic. The docs have checked him and that's the reason" - it would probably stop the nagging questions for a little while. But I think we can do better.

Seems to me that sometimes what she means is "his behavior annoys me", in these cases we tend to respond with empathy (yes, it's hard for us too sometimes) followed by small bits of concrete advice on how to get along with him more easily. It seems to work - she's very patient with him. Lately his speech has improved a lot, and I reckon that's mostly her work. She is a real blessing. :heart: :heart: :heart: So I suppose that part is probably covered.

Other times it seems to me that she's basically repeating questions that other kids have asked her about her brother. This part I struggle with. My better half has proposed we just go with "he has communication problems" because it's more descriptive, and actually points towards the idea that others may help him overcome some of his difficulties - as opposed to "he's autistic" which, to her peers at her age is probably just a label that doesn't explain anything. (To be honest, after reading up on autism for the last few months in all sorts of places on the web, it still seems a very ill-defined word to me as well).

Also, "autistic" is occasionally used as an insult around here.
OTOH I have always had a perverse tendency to "wear" potentially insulting labels with pride when I've been called weird, not normal, politically incorrect or whatever. A rather puerile part of me wants to design some kind of "autie pride" t-shirt and get like 10 made for each family member, so we never have to wear anything else again :lol:


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YippySkippy
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12 Mar 2015, 7:48 am

My opinion is that you should tell her the truth - he has autism. If you treat the diagnosis like a skeleton in the closet, then that's what it becomes. And there's no need for that, because there's nothing shameful about it.



Ettina
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12 Mar 2015, 3:36 pm

Tell her he has autism, and that 'autism' means his brain works differently from most people.