cahn: (Default)
[personal profile] cahn
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.

Date: 2015-07-23 11:48 pm (UTC)
thistleingrey: (Default)
From: [personal profile] thistleingrey
clear instructions are deeply comforting to her

I see your concern; I would suggest also that the instructions may be comforting because they indicate a system that can eventually be learned. Having a solid base in childhood may also (contrariwise) equip her later to question tiny deviations from what she's learned to rely upon and thus give her a better than average sense that something's off.

I'm glad that she gets on well with her therapist! I am glad of all of the positive things, including your sense of her :) but I think that having some sympathetic, household-external input will also be of use.

Date: 2015-07-25 05:45 pm (UTC)
thistleingrey: (Default)
From: [personal profile] thistleingrey
We're working on Not Ignoring What People Say, too--partly age, I think.

Date: 2015-07-24 07:44 am (UTC)
philomytha: girl in woods with a shaft of sunlight falling on her (Default)
From: [personal profile] philomytha
Welcome to the club! It's great that support and understanding what's going on is starting now for her, that's going to be really helpful. And oh yes, the aha moments when you find out what the technical language actually means and looks like in real life. I always thought Philomythulus wasn't rigid about things, but it turns out when he was younger he just didn't understand enough of the world around him to form expectations about what should happen. These days things that don't meet his expectations send him right into a tailspin.

Also, in my experience other adults don't notice anything unless their noses are rubbed in it. I mean, it took years for my parents to truly grasp that Philomythulus's autism wasn't something that would go away when he grew up or was just him being a bit wild or me being an inexperienced parent or whatever, and there are still times when we go out in public when he's in a calm mood and people compliment me on how quiet and well-behaved he is. (I just accept the compliment and don't explain that he's not shouting and yelling like the other kids are because he can't talk.)

Anyway, I hope this turns out to be a positive thing for you all. From what I've seen from other people's experiences, getting some practical interventions and support structures in place early in makes a big difference.

Date: 2015-07-28 05:11 am (UTC)
metaphortunate: (Default)
From: [personal profile] metaphortunate
Oh, my gosh. Well, I hope that the diagnosis is helpful, and yay, she likes her therapist! It sounds really good for her that you get what's going on with her, you know? That sort of understanding, so priceless.

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