Advice about 11yr old getting assessed for AS

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Hi Covuschik, thank you so much for taking the time to write your post. I really appreciate it. I did previously tell my daughter that it would only need to be us that knew about it, it didn't make a dent in her resistance though. She does have some ODD behaviours too, so that may well be an element of that involved (e.g. when she's misbehaved and I tell her to go to her room she shouts at me "you can't tell me what to do!" I also did previously tell her that there are famous and amazing people with AS, and showed her two pictures of beautiful ladies with AS (she loves girly things). The only 'problem' if you can call it that, with her handwriting, is that she won't write in joined up writing, other than that her writing is quite neat and legible. She learned joined up writing back in school and then started to revert to unjoined up writing, because she says it takes longer. She's also left handed (as is my younger daughter) which doesn't help, but I can't really say she has any real handwriting issues.

The other thing is, she's really resistant to learning. I find this a shame as she's so clever. I've always had a really structured approach to home ed, following the curriculum and using proper books and websites etc. Maybe it's too like school for her, but having AS myself I also need the structure and evidence of what she's learning, and she does at least seem to feel at ease with the routine, it's just the work itself she doesn't like (she was the same about learning when she was at school). I'm digressing here aren't I!

That's so reassuring to know about the IQ thing. I've noticed that when she does English, she gives very literal answers, and often repeats whole chunks of text from the book rather than writing things in her own words. I've explained to her how to do it, but she still does it like that. Presumably this will show up in the verbal reasoning side.

We do meet up with another home educating family quite regularly (who I believe all have undiagnosed AS!) and other random members of the local HE community here and there. She's only interested in the ones we meet up with regularly though, which I think is partly because they are similar to her and like the same things but also because she's used to them etc. She does meet up with them online as well (she even gets upset about little things she thinks are mean there too!). I think I pressure myself because people are so quick to judge home educating as something that deprives children of a social life, but she had no social life when she was at school (if you don't count the short play times during school hours) because she couldn't maintain friendships and had constant problems with other children. She has a more stable form of socialising now that she's home educated, but even that has recently had a hiccup when there was a falling out between the children which I had to sort out. I just don't want the assessment team to make an erroneous judgement that the way she is, is anything to do with her not being in school, as it isn't.

You say that your younger son is missing the special interest behaviour, I just wondered whether it's possibly a behaviour he has but that has slipped under the radar because it's not an obvious one? I ask this because in girls with AS, the collecting behaviours are known to be more gender relevant, such as collecting dolls so because they are not unusual they might not get noticed. In myself, the collecting behaviours is loads of handbags and matching shoes, most of which never get used. I also collect beauty gadgets, way more than I need, again most of which never get used. It took me some time to recognise these and other collecting habits I have because you get used to reading about boys collecting or obsessing about plastic dinosaurs or train information etc. My girls have collections of swing tags from their new clothes and toys amongst other things, they are so inocuous they can be missed. I think the professionals don't often see how the condition presents in the individual, they seem to try too hard to match the individual to the diagnostic criteria very rigidly. For instance, I don't have a special interest as such that I would monologue about, but I do monologue and the special interest in me translates as writing letters of complaint (only with valid reason though) that get very lengthy (got one going for over 18 months right now) that I am determined to get satisfaction from and send very long letters etc. for. It's worth analysing your son to see if there are areas that it is a very individual thing in how he fits the behaviour.

Sorry my reply is a tad long too! When I get going I can 'type for England', it's the textual version of the monologuing!

Resistance is so frustrating b/c these kids are soooo smart!

When they assess her, maybe it makes sense to have them start with the IQ. I think this one is hard to "throw". My son's IQ test showed the scatter - super high in spacial reasoning, for example, and super low in processing speed.

I often have to plug away matter of factly without fanfare when trying to get my son to accept something. He's 11 now but was younger when diagnosed, so I know it will be much harder for you. I try to say simple things, like, "When we go to [the new homeschool program or whatever], would you like ham in your lunch? "

Your husband is really key here. I would work on him much more than your daughter. He may be the reason she is resistant. We are going through something similar right now. My son doesn't really want to join chorus but I had convinced him somewhat and paid for it. In front of him, my husband said - no way, he doesn't want to go, he has karate that night. My husband negated all the work I had done to convince my son. In private I had to work on my husband and show him the other karate classes my son can attend and convince him that chorus will provide plenty of benefits my son wouldn't have otherwise - socially as well as musically. Now my husband has to back-track and get my son on board with chorus again.

Yes, they are smart and this is a lot of the problem. There's a lot of analysis going on in their minds, but the niavety they have means that despite that they analyse too deeply they still don't always understand, or get the wrong idea.

I don't think my husband put the resistance in her head, I spoke to her alone when I first broached the subject. Never an easy thing to do and I was terrified, but I couldn't take her along to appointments without her knowing why she was going. I think what it is, you know how they get fixated on things? Well, she had in her head the word 'syndrome' means Down's syndrome, or something that is an obvious handicap, and no matter what I say now I can't budge her from this initial view. It's just that since she knew her dad is in denial too, it's just reaffirmed her own belief as I guess it's nice for her to have someone else 'on her side' (as children tend to see things like that!). Although I know there must surely be an element of fear involved, which I hate because I don't want her to fear anything, and I've really tried my best to reassure her, I think fear is probably at the root. If only I could get in her head.

The problem is, the issue has to be readdressed when she next has an appointment, but at the moment, it's almost like she instantly rolls her eyes if even the slightest reference is made to anything to do with it. I think I really have to get her alone and have a deep heart to heart. Otherwise there will exist this tension about it, and I want it all to be open and worry-free for her, but also as least stressful as possible for me.

What if you pointed out other kinds of syndromes, like Chronic Fatigue Syndrome, which has nothing to do intelligence or mental illness. I guess my only counter-thought would be that it probably would not help her to see this as an "illness" at all.

Would sharing the wikipedia page help? http://en.wikipedia.org/wiki/Syndrome I could see where it would help some kids with this issue, but make it worse for others. My son, for example, would take from it that a syndrome is a group of symptoms that occur together, whereas I imagine when my daughter is older, she'd get stuck on the illness part, particularly AIDS. Not knowing your daughter, I thought I'd throw it out there as a possibility.

Funnily enough I had already shown her the explanation of what syndrome means on Wikipedia, as soon as I knew the word syndrome bothered her. I really appreciate all the suggestions, something I haven't yet tried might crop up among them so I'm reading everything!