When You Know

When You Know

A friend confided in me recently about her concerns over her brother’s son.  She was trying to not be intrusive, but every time she saw him she felt like something was just off.  My friend has kids of her own, so she has seen typical development and felt like her nephew wasn’t hitting milestones as he should.  He wasn’t responding to his name, wasn’t playing like most babies do, wasn’t interested in crawling.  She was concerned, and wanted to say something to her brother.  “What should I say?” she asked.  I wasn’t sure, but the entire conversation brought a flood of my own memories. 

Billy and I had taken the girls to Florida and Coleman had stayed with my family.  When we returned less than a week later, the things I had been noticing slowly over the prior months now seemed blatant.  For quite some time, I had noticed that he didn’t seem to respond when I called his name.  He’s just very focused on what he’s doing, I reasoned.   And then I observed his lack of interest in other kids.  He’s independent, I silently cheered.  And then I noticed that he wanted to watch just a tiny section of a single show, over and over again.  And then, that he seemed unmotivated to crawl around and explore.  Even amid a pile of toys.  He’s a thinker, I told myself.  He’s going to be brilliant someday.    And then I noticed how much he perseverated on that one toy.  Every child has a favorite toy, I told myself.  But then I quietly noticed that even with his favorite toy, he was fascinated only with spinning the wheels.  And that, in fact, he liked to watch a lot of things spin.  And that he liked to line things up.  Lots of things. 

It takes a lot, really, to get you to say it out loud the first time:  “Do you think this is normal?”   And then you are defiant and defensive when whomever you have asked says it is not.   “What do you mean?  You just don’t see him enough” you practically yell back.  You spit back to them every rationale, every stretch of a reason you’ve been telling yourself over the past year to explain his behavior.  Your face is red and hot and you are irrationally angry.  Your friend politely tries to back off, but it’s too late, it’s already out there.  The brief conversation ends.   But later that night, when you are alone with your boy, you watch him more closely, willing him to do something that looks ‘normal’.  You lean over to him, and whisper  “Say Mommy, buddy. Say mama.”  But he just stares at you.  “Hey, pal, look at this ball!  It’s so fun to roll like this!!” and you roll it toward him but he just watches it roll and looks away.  And you pick up his favorite toy train and run it along the floor, saying “Chooo chooo!!!   See the train racing by!” and you hand him the train saying “You try it!” and he takes the train but turns it over and spins the wheels with his thumb.  And you know. 

Be gentle with your family and friends when you suspect their child is delayed or having trouble.  Because even when you know, it’s really hard to hear.    And having it confirmed by a formal diagnosis is no picnic either.  Worse still are the days and weeks that follow a diagnosis, because there is so little support medically, that once the news settles in, you are struck by a desperate feeling of having no idea what the hell to do.  And here, I think, is where traditional medicine begins to fail us.       

There is no standard treatment path in place that guides you along this vast, complicated land of Autism.  There is no annual appointment, no at-home follow-up, no clinic follow-up, not even a phone-call follow up.  At your feedback session after the initial testing, you are told gently that your child has Autism.  You are urged to seek an educational program for your child based on ABA (Applied Behavior Analysis) with a substantially separate class.  And that is all.  It is a rather brief meeting.  Basically a pat on the back, tough luck Chuck, and you are on your way.  Autism is a life-long, debilitating illness with multiple biological and neurological comorbidities.  And you are given a 15 minute conversation about it and that is it.  It’s no wonder parents are nearly suffocating under the weight of trying to raise an autistic child.  No one knows what the hell to do.  The parting words “get in an ABA program” are their only hope.  So that’s where most people start.  It’s also where most people end.  It would have been the end for us too, I think, if I hadn’t read this one simple book.  But I did, and that one simple book started a pretty big revolution over here.