Do You Know What It Feels Like For A Boy In This World (Of Autism)?

There is a scene in the movie Wretches & Jabberers where an autistic Japanese adolescent is saying “good bye” to the two main characters.  He waves “bye-bye”.  It struck me because Ben also waves bye-bye the same way.  These three characters in the documentary are all intelligent, if not brilliant, individuals.  While they used computers and devices that spoke for them as they typed, I was constantly floored at the conversations they had with each other.  Thinking of what that film represents, I am reminded of Ben’s ever increasing awareness and understanding of his world, even when his language does not measure up to engage him with others.  He knows that when he’s starting to get in trouble or caught doing something he shouldn’t, he comes up and says “Hi!  Hi!  Hi!” over and over in the sweetest voice so that one can do nothing but forget what they were going to have him stop doing in the first place.  He also uses “bye-bye” very appropriately and politely when he wants someone to go away that he doesn’t like or want around him.  It comes out so sweet and sincere that you can’t possibly take it the wrong way.  I recall he said it to all the doctors in Costa Rica as soon as they would step foot into our room – “Bye-bye!  Bye-Bye!  Bye-Bye!”  While he had nothing against the doctors and nurses themselves, he surely didn’t want them to poke and prod even more than they already had that week.  This happens at every doctor visit and there are numerous visits for developmental pediatricians, ENT’s, ophthalmologists, orthopedic surgeons, plastic surgeons, naturopaths and ER visits.  It seems like I’m always scheduling the next doctor appointment for him.   He has a smaller pool of vocabulary than neuro-typical toddlers his same age.  He has some echolalia, repetition of the same word or the last word someone said, on certain days.  He will often repeat me when I tell him “no”.  He counters with “No!  No!  No!” over and over again. Ben also might have some apraxia of speech and we are watching him with his speech therapist over the next year to see how he develops.   He has some OCD developing lately with his favorite items….Trucks and Cars!  Most of the day he has to be holding 1-4 cars/truck toys at a time and gets very very upset if we take any way.  He recently started to sleep with them (or at least fall asleep with them) and the first thing he says when he wakes up in the morning is “Ttttrrrruuu(ck)” (he’s working on the last syllable) or “Caaaaar”.  He can hear them going down the road what seems like a mile away.  Sensory integration is another challenge.  He craves big big input.  He moves the furniture around in our house.  He loves to pick up very heavy items.  To crash into the couch.  To hug.  Oh the hugging.  He’s known for his amazing hugs.  And he gives them freely to every beautiful woman he passes on the street.  It’s very adorable.  I do wonder how that’s going to play out as he hits his teenage years and older.  He has a weighted vest that he sometimes wears to keep his center and give him the feeling of being hugged at all times. 

While his speech/language and repetitive behaviors are challenging, the hardest part of being the parent of a child with Autism at times are the behavioral episodes.  Meltdowns are intense.  Sure, I can tell when he’s just having a temper tantrum because he wants something or is “faking it” per se.  But meltdowns are usually brought on for him by sensory overload (too loud, too many people, too bright, smells are too strong, temperature is too hot or cold) .  In these episodes, the SIB’s occur as well as behavior towards myself or his therapists or Julie, his nanny.  He hits.  He pulls hair (out in clumps).  He bites.  He pinches in a way that can make you yelp.  He head butts your head (I’ve had a black eye from him early on when he was only about a year).  He throws things and scatters items.  He screams a very high pitched scream that I associate with his autism.  He hits his own head on the wall, the floor, tables, anything he can find or hits his head with his hands.  He bites his hands.  He pinches himself.  Anything to make the overloading input stop or enough output to counter balance it.  If we don’t warn him before a transition it can be a major issue in his world.  Flexibility can be his downfall some days.  Waiting for anything is a mounting obstacle currently. 

His brain is built differently.  Receives information and transfers information differently from neuo-typical people.  Bottom line is that he can’t help much of what he does right now.  Therapies are trying to grown those brain neurons in a different direction.  The key to early intervention is that the child hasn’t finished brain development and it’s easier to guide them into the proper path originally than have to retrain the neuron pathways once they are formed.  But everything is unknown right now.  It’s hard to hear “he’s going to be high functioning” when no one really knows yet and as a parent who wishes for the moon but keeps feet on the ground, we have to hedge our bets and be ready for any direction our children take with regard to their Autism.  I will do everything I can to help him live up to the potential we all wish upon him and love him no matter where his life leads. 

I see the intelligence rather than the inability in Ben.   I see strengths rather than deficits.  Please see them also when you look at Ben.