Autism and Routines, with thanks to Naoki Higashida

I recently got a chance to review the latest book by Naoki Higashida, a Japanese man with autism who writes by means of pointing to letters on a letterboard.  I'm ashamed to say I've owned "The Reason I Jump" for years, and hadn't read it until now.  When I got the new book, "Fall Down 7 Times Get up 8", I read them both.

The books were not what I expected.  They were far more helpful than I'd expected, and more nuanced.  The author is very honest, and the books are far from all positive---there are many parts of being autistic that he says are very painful.  He sounds much like Janey in terms of his verbal speech and his level of independence.  That doesn't mean that she is like him, any more than I'm like others who speak at my level, but it's a chance to get a glimpse into the mind of someone with more insight into Janey's mind than most.

I won't go over everything about the books---you can read them if you want to.  But what I want to talk about is what I learned about autistic routines, both from the books and from applying what I read to what I've seen in Janey.

Higashida explains (and I'm paraphrasing here) that routines are not really a positive or negative thing.  It's not that they bring him pleasure or make him upset.  It's more than they simply MUST be done.  They are like breathing or eating.  Once something is established as a routine, it feels essential to follow the routine.  If someone tries to prevent this, it's extremely upsetting---again, not because he enjoys the routine so much, but because it feels like something vital is being stopped.

From this, I thought about how routines get established.  We establish routines all the time, often without realizing it.  For example, if Janey goes onto the bed and wets it during the day, our next part in the routine is to get upset, to remind her we always go in the potty, and to change the bed.  By following our parts of the routine, we further set it in place.  I can see how that goes.  If Janey feels the need to urinate, she starts her part of the routine---go to the bed.  We follow our parts---get upset, remind her, change the bed.  The routine to her isn't what it is to us.  She doesn't see it as "IF I wet the bed, THEN they will get all upset, SO I shouldn't wet the bed"  She sees it as a series of events that are linked.

Getting ice cream---one of the happy branches of the routine!

It's making me think that one of the big keys to both Janey and us being happy is to do everything to keep routines that make us unhappy from being established, and do everything to make routines that make us happy established.  I've done this sometimes, without thinking of it as such.  For example, after school used to be a hellish time often.  I thought about what after-school things are positive for Janey and for me.  The first part of coming home for her is always taking off her shoes and going to the refrigerator and looking for a snack.  Now, I always have a snack she will like waiting for her to find.  Before, I'd wait for her to ask, and if she asked for something I didn't have, the routine was for her to freak out.  Now, since she does the looking, her routine is to eat the food she likes that is there.  Next, she watches a video.  Before, if I was in the middle of something, I'd tell her to wait a bit to put on the show she wanted.  Then she'd scream.  Now, I make myself available when I know she'll want a show, and put it on right away.  The routine now is to watch the show happily, and my routine is to get to sit there and read or knit.  We are both happy.

It's my parts of the routine that I can change.  Much of the routine for her is reactions to things I do.  It's FAR easier for me to change the things I do to get the reactions I want from her than it is for her to change her routine.  I think this is where I often used to get tripped up, and where things like ABA don't really take into consideration how the mind of someone with autism works.  We think in terms of actions being modified by feelings.  If someone reacts angrily, or someone gives you a treat that makes you happy, we assume that will change the next step.  We think of thoughts like this... "Mama waited to put on the video because she was busy, and when I screamed, she said she wasn't putting it on because I was screaming, so next time, I won't scream"  But Janey thinks (I believe) more like "First I ask for a video.  Then Mama says not right now.  Then I scream.  Then I wait a little more.  Then later Mama puts on the video"  Janey's screaming is part of the routine.  But if I am available to put on the video right way, I switch Janey to a new routine, a branch in the other one, one where she happily watches a video and I don't have to hear screaming.

So much of what has worked over the past few easier years has come about by what many would probably see as us "giving in" to Janey.  What I think people who see it that way don't get is that we ALL are much happier.  Why is "giving in" seen as bad?  I think it's because we again don't think the way Janey thinks.  We think of someone more typical, someone who might think like "So if I make a fuss, I get what I want.  I need to use that!"  Janey doesn't think that way.  She doesn't generalize that way.  She thinks in terms of the sequence.  The sequence can include screaming or not, but it's not a cause and effect in her mind.

I might not be explaining this as well as I wish I could, but in my mind, it's been a bit of a breakthrough. Higashida explains routines much better than I do.  And I very much appreciate how hard it was for him to write the books, and I thank him for doing so.  His insight is going to make at least a few lives, those of our family, easier and happier.

Better days, and insights

Thank goodness, the last few days have been much better with Janey.  As so often happens with her, we have no real explanation of why she went through such a horrible period and why she came out of it, but it's great to have our happy girl back.  When she's happy like this, it's hard to even picture how bad it gets when she is so sad.  She hasn't bitten her arm in days (again, knock on wood!) and yesterday she only cried once, for just a minute.  It's been lovely.

I've had a few insights about Janey lately, probably due to thinking about her so much in trying to figure out what makes her happy or sad.  One is how very, very VERY active she is.  She is non-stop movement.  In that way she is very much like Tony, and like my mother.  She doesn't rest---she is constantly jumping, running around, asking for things, wanting to be on the go.  I don't think this is her autism; I think it's just her. The medication she is taking almost always makes kids gain weight, but weight doesn't have a chance on Janey.  Janey was like that from the start.  When I was pregnant with her, a tough troubled pregnancy, I never worried about her being still okay, as she kicked CONSTANTLY.  I used to wonder about whether she ever slept in there.  My boys were not like that, and are not like that.  They are more like me---prone to long stretches of not doing much active.  I realize that this drive to move affects her mood.  She needs to keep on the go, and when we can't, it makes her crazy.  I am very glad Tony understands this.  He instinctively knows when she needs to go outside, to get out of the houses, to do something with movement.  It also explains a little her lack of interest in books and reading.  More and more, we do think she can read, but she doesn't sit down and read, nor does Tony, although he was a great student and an Ivy League graduate.  Reading is too passive for either of them.  Here's a picture of Janey in her usual mode, running and jumping.

The other insight I had is how Janey not only memorizes words and music, but movements and body positions.  This came to me during one of my Total Janey Time attempts.  After school, I went into the backyard with her where we had her wading pool set up.  The day before, I had gotten into the pool with her, and she sat on my lap and played with pool toys.  That day was very hot, but this next day was very cool, but Janey was determined I sit in the pool with her again.  In the spirit of Total Janey Time, I did.  Once in there, Janey kept adjusting where my legs were with her hands, and moving my arms, and pushing me to the "right" part of the pool.  I realized she wanted to completely recreate the day before, and she had a complete memory of how we were sitting that day.  This is something I remember Janey doing way, way back, once I thought about it.  Her first year is often a blur in my mind, but I recalled playing with her at 10 months or so and having her put my hands in different positions, wanting me to play in a certain way that I realized was how we had played previously.  The insight also explains Janey's amazing ability to dance.  She channels any dancer she's seen---copying their moves exactly.  That's probably what led to the most amazing moment pretty much of Janey's life and ours---that day Michael Jackson died, when we put on some of his music and she danced EXACTLY as he did.  I think now she must have at some point seem Billie Jean being danced to, and recalled it exactly.  It must be hard having this kind of recall, because other people don't remember exactly how they moved previously.  I wonder if that causes a lot of Janey's tantrums.  She remembers a good time, tries to get another person to recreate it, and they just can't, and she doesn't know how to explain what she wants them to do.

Here's hoping Janey's good times keep up for a long time, and that I keep figuring her out, a little bit at a time.