I’ve written quite a bit about Thomas in the past, but you haven’t heard me write much about my daughter Katherine, except in passing.  There’s a reason for that.  One of the main reasons I stopped writing this blog several years ago, in fact, was because Katherine was diagnosed with autism in March 2006. We did exhaustive research and learned that there were cases where early intervention seemed to lead to complete or near-complete recovery, and since this was a possibility, we decided we were going to try to keep her condition as close to the vest as we could, in view of her future privacy.  If Katherine was indeed able to overcome her disability, she shouldn’t have to live with a label the rest of her life.

We told few people outside the immediate family and the folks I see at work every day.  I felt I couldn’t write about what we were going through, and since for months, then years, we were focusing all our efforts on research and therapy, that meant I couldn’t really write about the bulk of what was fundamentally important in my life.  So I kept silent, waiting for her to close the developmental gap between her and her peers.

Well, that’s not going to happen.  I love my daughter dearly, and she has made wonderful progress through the diligent efforts of Robin and her Applied Behavioral Analysis team, but it has become obvious over the years that the particular issues Katherine has are not going to go away with time.

One of the problems with “autism” as a diagnostic category is that it is so vague and encompasses so many variations in condition that it tells you almost nothing to know that someone “has autism”.  It tells you nothing other than the basic fact that they have some degree of cognitive issues dealing with social behavior, communication, and sensory input, with other possible deficits tacked on.

Katherine’s autism is atypical in many ways.  She’s actually reasonably accessible socially; her eye contact is good, you can get and keep her attention fairly easily, she has very good physical coordination, and she’s interested in watching and imitating what peers and adults do to at least a moderate degree.  She’s not the life of the party, but she’s not a total wallflower either.  She has a charm all her own and she will melt your heart if you find a way to connect with her.

She’s turning six at the end of October, just starting Kindergarten this year.  She knows her alphabet, numbers to twenty, colors and shapes, and can read sight words and even sound out many basic three-letter words phonetically.  From a skills perspective she’s about where she needs to be for Kindergarten.  The problem is that she just can’t seem to take in more than about 3-4 spoken words at a time.  There is some sort of disconnect between her ears and the language centers in her brain that we don’t think we’ll be able to get around.

Since she doesn’t absorb many words at a time if you speak to her in normal sentences she misses most or all of it. So if we want to effectively communicate with her we need to use “Katherinese” — abbreviated, telegraphic sentences like “First store, then movie”.  As long as she has been taught the appropriate grammatical constructs — an ongoing process — she can understand this and generally responds well.  She’s very sweet-tempered and sanguine as long as she understands what is going on in her life, which is a great blessing.

We have evidence that her eyes are better connected to her language centers and hope to leverage that to increase her communication skill, but without the ability to follow normal conversation, Katherine will never fully blend in.  Spoken language affects pretty much everything in her life to some degree.  When she can’t understand, she can’t respond.  And even when she does understand, her verbal output is also limited, so making her wants and needs known can be very problematic for her.  She can’t express herself with language that she doesn’t know and it is very hard for her to learn language with so little of it getting into her brain in the first place.

Interestingly, like some people who stutter, music seems like an “out of band” channel for her.  She can memorize long songs and sing them on key, and we’ve experimented with seeing whether she can understand more words when they are sung to her than when they are spoken.  It does seem to work a bit better, but it’s not a drastic improvement.

So expect to see some more about what’s going on with Katherine, alongside the other updates on Thomas and Robin and Baby Boy to be Named Later.  Our little girl is not what we expected, and we’re still working as hard as we can to prepare her for her future life, but we’re proud of her — both of who she is and of what she’s accomplished so far — nevertheless.

Tags: Autism, Katherine