Thursday, May 3, 2012

On Regression and Autism

I've been planning all week on posting several different things about writing, publishing, reading, and my current WIP, but something else a little bigger has loomed above those things, so I'm going with that this morning.


re·gres·sion - n. Relapse to a less perfect or developed state

Any parent knows that raising a child is a push-pull-restrain-two-steps-forward-five-steps back sort of affair.  Soon as they unlearn a bad habit or trait, soon as they mount another level of development in one area, they fall back or regress in another.

It's a normal state of affairs. And every child is different, developing at different rates. However, for autistic children, regression can be a huge setback leveling a much bigger impact than a child returning to diapers after being potty trained, or sticking that thumb back into their mouth after spending months thumb-free.

If you're not a parent of an autistic child, then you don't understand.  Yes, we love and care for all our children equally no matter what their strengths and faults, but the BIGGEST hurdle - in my opinion - that autistic children face others don't is learning appropriate social behavior, reactions, and communicating in a way that is useful, beneficial, and functional.  

It's hard enough to get children not suffering from autism (notice I didn't say normal children) to this point, but for autistic kids, that's their main struggle: their inability to communicate feelings and needs, this impairment that holds them at a very developmentally delayed spot while others march on ahead.

And probably the worst - and scariest - part of autism is how regression can be sparked by one, simple little thing, undoing months...or a whole year...of progress that now needs to be rebuilt.  And it was so hard getting there in the first place that, depending on the level of regression, the impact can be disheartening to the point of debilitating. 

If you're not the parent of an autistic child, you just don't know. I'm not being unloving or uncaring, I'm just stating the facts as  they are.  And the fact is that right now, Zack's in the middle of a frustrating regression, of sorts.

As always, I need to again emphasize how lucky we are. Some families have it much worse. Sorry, not to mince words, but some suffering from autism have no hope at a socially functional life (again, notice how I didn't say normal). Zack has a more-than excellent chance.  But still, he's prone to setbacks (like all humans) and prone to regression, which we're getting a sobering reminder of.

Last week, I posted about how we're changing our daily television habits, turning the TV off every night before bedtime and just playing audio stories.   And so far, it's worked well.  Zack at first didn't know what to do with himself, while Madi adapted much more quickly, reading or drawing or writing (making Daddy proud with that last one, of course).  Zack is doing better now, sitting quietly and listening to the audio stories better than he was.

But he's regressed, sure enough.  We'd got him to the point in which he "stimmed" very little. For a little review:

Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner. Stimming is known in psychiatry as a "stereotypy", a continuous, purposeless movement. 

Stimming is one of the symptoms listed by the DSM IV for autism.  Common forms of stimming among people with autism include hand flapping, body spinning or rocking, lining up or spinning toys or other objects, echolalia, perseveration, and repeating rote phrases.

That last has vexed us to no end.  In many ways, Zack's memory and intelligence is staggering.  He memorizes things word-for-word, and can repeat them and re-combine things and almost compose them from heart, almost word to word of the original. Someday, this may become a very useful trait.

But right now, it's also his worst enemy.  Because when this happens, he "goes away".  That's the best way to describe it.  His personality disappears, his eyes glaze over, and he's completely taken over by whatever he's "stimming" on.  Right now, it's Blue's Clues, and again, this is the frustrating part of autism. Blue's Clues is normally a pretty harmless, educational show. One we support.  

But for the last month, Zack has been literally OBSESSED with Steve and Blue and his notebook.  Literally, he barely watches the show once a week, but lately, almost 75 % of his daily activity is spent in stimming on acting out Blue's Clues.

Now, please understand. All kids mimic and act out.  Madi does it all the time.  But the difference is how much control  this stimming exerts over the individual.  Madi acts out certain shows and scenarios with her toy animals, but we can speak to her. Communicate with her.  She can put them away and come to dinner.   But when Zack gets into his groove....

He's not there anymore. There's nothing but the stimming, and it's like talking to a Zack-shaped robot. 

And he'd been doing so well. Worst part is, it came out of nowhere.  Not even sure how this happened.  Two or three months ago, he'd been watching a lot of Blue's Clues, writing in his notebook, and we though it was "cute."  I actually liked it, because he was writing and drawing different shapes, which he'd never taken much of an interest in before.  And there's something ELSE frustrating about autism.  Something they start doing or acting out that seems cute and fun at first...until it hits almost a "critical mass" and takes him over.


Things are getting a little better.  Reducing the television at night, he no longer plays with his sister's Leapster (hand-held educational game system) because he was stimming off that, too.  And finally, he's returning to playing with things and his toys, his beloved trains in particular.

But it was a sober reminder.  All kids suffer setbacks, many of them mature at different rates.  But regression is always a looming specter unique to autistic kids.   And it looks like we've surmounted this one.  But, there will be more.

And that's just a fact of living with autism.