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So, I keep intending to talk about this here, and I keep not doing… - i have to come up with a title? [entries|archive|friends|userinfo]

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[Jul. 23rd, 2015|12:24 pm]

So, I keep intending to talk about this here, and I keep not doing so. About six months ago E. was diagnosed with (very mild, very-high-functioning) ASD (Autism Spectrum Disorder). This makes sense of a lot of things, not least the meltdowns that were the cause of the referral to the autism clinic in the first place.

I had kind of talked myself into believing that E. was more-or-less typical. (She does present that way to adults who don't have a lot of experience with other kids her age; it's her caregivers mostly who have been concerned about her, though also a couple of friends of ours who have grandchildren that age have noticed things about her.)

The evaluation dispelled those illusions. The psychologist kept asking us questions like, "Is E. rigid about things having to be a certain way?"

I'd read that ASD kids often need to keep to a rigid schedule -- I did know ASD was a possibility, and I'd done a fair amount of reading on it -- and I said brightly, "Oh, no, she's totally fine with changing schedules." (Which is a Really Good Thing, as our family -- by which I principally mean D -- would have a really tough time sticking to a rigid schedule.)

The psychologist said patiently, "It can manifest in other ways, like getting really upset when something is out of place or not going the way she expects it to go."

And I sort of gaped at him, because this is the origin of 90% of her meltdowns: she draws something and it doesn't come out exactly the way she intended, or we're playing a game and cards get mixed up and she won't accept that she can have different cards from the ones that were originally dealt to her ("They have to be the exact same ones!")... I mean, these are things that might annoy another child, but she gets upset out of all proportion to what I've seen of other kids' reactions.

(Though in the last year she has gotten much better about handling her emotions: her meltdowns now tend to happen when she's hungry or sick or tired. Unfortunately, she brings home some kind of cold every couple of weeks or so, and then it's a bunch of meltdowns for a couple of days. Fortunately, I guess, her immune system is like steel aside from that, so she often has no other symptoms and I only realize it's a cold when the rest of us inevitably come down with it.)

Anyway, that was the most extreme example, but this kind of thing happened several times during the evaluation. By the time the psychologist told us that her behaviors were consistent with mild ASD, it was pretty glaringly clear that this was going to be the case.

We just got the insurance approved and are starting therapy for her. She LOVES her therapist, who is extremely sweet and fun and willing to do hours of imaginative play with her.

As I said before: many adults don't even notice anything is atypical about her if she's not in the process of melting down, as she is very high-functioning. She has theory of mind; she understands other people are distinct entities. She has a sense of humor and can engage in imaginative play. She is socially motivated to want to play with other kids, even if she doesn't always quite understand how to do that. She by and large does what we ask her to do (and when she doesn't, it's normal five-year-old pushback -- in fact, she's rather more biddable than the average five-year-old, I think because clear instructions are deeply comforting to her, and sometimes I worry that when she gets older she might get taken advantage of because of this). She is talkative (well, about things that interest her) and affectionate (although it's definitely got a learned feel to it rather than being spontaneous) and loves to be helpful. For a lot of things she seems delayed rather than flat-out not-getting-it (a lot of these things, like the social motivation, affection, imaginative play, etc. have been delayed by anywhere from six months to two years from when I noticed them in her peers).

She is an amazingly wonderful and sweet kid, and a delight to be around, and I wouldn't trade her for any other kid in the world.

The interesting thing is, I see so much of myself in E. -- I melted down a lot as a kid too (especially when hungry) and was rigid about a lot of stuff, and had a lot of social/emotional obliviousness (still do; I've internalized a lot of social scripts and responses at this point, but to this day I have to think consciously about it), was naïve and always took a lot of things at face value, and was very invested in following rules -- I think E. is a little more extreme about all these things? But it's super not surprising that she turned out this way with me donating half of her genetic material, that's what I'm saying here. (D. was very quiet and introverted as a child, probably even more than I was, but my best guess is that he didn't really display these specific kinds of behaviors, and even now, although in general he is less social than I am, I think his approach to social situations is more natural and less scripted than mine.) I do wonder a lot whether I would have been diagnosed had these kinds of criteria been applied to me when I was five. I also kind of wonder about my dad, who, um, also has a lot of these traits. And his dad.

On one hand, it's probably good I'm her parent, because I understand a lot of the way she thinks (which my poor extremely-socially-savvy mom had no chance of doing), I know what kinds of parental discipline won't work, and I know the things I wish I'd known or had been able to work on as a kid. On the other hand, my mom basically made me a social network by the sheer force of her personality, and that's something I won't be able to do for her, so that's something I worry about.

[User Picture]From: lignota
2015-07-23 09:43 pm (UTC)
I think E. is lucky to have someone like you who notices when something is wrong/different, takes the time to get her treatment which can help her, is patient with her, and doesn't shame her or berate her for things she can't help. (I'm just thinking about the ways my parents tried to handle my mental eccentricities as a kid, which mostly involved trying to make me ashamed of myself and my behavior. They meant well, but it wasn't so helpful in practice.) I hope E.'s diagnosis leads to helpful things.
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[User Picture]From: charlie_ego
2015-07-25 06:06 pm (UTC)
Gosh, I appreciate those words, because it's very easy for me to feel overwhelmed and like I'm not doing things right. And sometimes I totally fail on the patience thing! But I'm trying. And yes absolutely to shame techniques, which my parents used a lot -- like you say, they meant well, but it was not so helpful, and I'd really like to avoid that as a parent.
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