Autism

This is how our 22-month-old son leaves his toys when he is finished playing.

As an educator certified in elementary and special education, I recognized signs of autism in our son when he was just eight months old.  He studied his favorite rattle by turning it over and over in his hands, looking at it from every angle, for a full 45 minutes.  We were unable to distract his attention from his toy.  The pediatrician told me that our baby had amazing focus and because he made decent eye contact, he was fine.  The early interventionists reassured me that I was accurate in noticing red flags, but with certain strategies in place we could work through it.  Despite our interventions, as the months passed the red flags increased.  I practiced using the word.  Autism.  Out of my mouth, it sounded normal.  It was my informal assessment of our son's developmental differences.

Our son's follow-up neurology appointment was on Tuesday.  We had completed everything as prescribed: five months of intensive interventions, seven therapy sessions weekly.  Physical therapy, Occupational Therapy, and Speech.  Initial evaluations and progress reports faxed in one week earlier.  A reassessment visit with more data.

Back in the little chair in the neurologist's office sat our son.  He still refused to participate in the testing.  Uninterested in the objects placed before him, he again he threw the pieces to the floor.  I mentioned to the doctor that if she sang the instructions, our son would be more apt to pay attention.  She humored me, and sing-songed, "Put the cube in the cup!" Our son looked her in the eyes, picked up the red cube, and dropped it in the cup with a clatter.

The neurologist asked us questions and listened for over an hour.  She had clearly paid very close attention, because she summed up our son in one sentence:  He is self-directed.  This is a fancy way of saying that he wants to do what he wants to do when he wants to do it.  It is difficult to engage him in anything else.  Fortunately for us, he loves letters and numbers.  We engage him with books and songs.

I was fully in parent-mode.  The doctor talked us through her findings.  She made her diagnosis.  "With the addition of all of this data I can say that he fits the clinical definition of autism.  Your son has autism."

Her words punched me in the gut and left me breathless.  I saw my son playing on the floor with his toys while the room around him blurred.  The doctor continued to speak, but I could not make out the words.  I heard my wife ask, "What are the next steps?" and something about 25 hours of weekly ABA (Applied Behavioral Analysis) therapy and my own breathing.  Suddenly we were being ushered out of her office.

"But he could be cognitively fine," I said desperately, in response to his low cognitive scores in both visits.  "Right?  He could be cognitively fine but refusing to perform?"  The doctor kindly agreed that this was likely the case.  Nothing felt real.

We meandered our way to the hospital's cafeteria for lunch.  My wife was not expecting an autism diagnosis, and was quietly processing what this would mean for the future.  I was expecting it, yet fell apart.  Receiving the news as a parent was completely different than understanding it as a professional.

Our son today is the same sweet child he was yesterday.  In that sense, nothing has changed.  Family members wrote to remind me that autism is "just a word."  While this is true, they are not realizing the enormity of what an autism diagnosis means for both our son and our family.

The neurologist told us that at a microscopic level, the cells in the brains of people with autism are arranged differently than the cells in the brains of typical people.  To us this means that autism is not something a child outgrows, like a developmental delay.  There is no sense of "catching up."  An autism diagnosis implies that our son is never going to be a typical kid.  He may be able to act like a typical kid depending on how well he progresses with his therapies, but autism is lifelong condition - his brain will always process the world differently than we do.

Society does not yet accept people with disabilities as equals.  Even if our son does develop a lot of skills and coping strategies, he will inevitably face discrimination to some degree.  


Another family member was more optimistic.  He wrote that we are all the sum of our parts and that is what makes us unique and special. This diagnosis now that it has been named is only one more part of who he is that will make him uniquely him and give him his own special take on the world.  When society as a whole understands this, autism will truly be "just a word."

In the meantime, we will do everything in our power to support, protect, and advocate for our son, who has autism.

Our Little Escapee

I can thank my son for helping me stay fit.

In Boston Public Schools they are called "runners."  In Collier County Public Schools, they are called "elopers."  In our own home, we call them "escape artists."  Regardless of the name, our son one of them.  These are students that bolt out of the room and require a search party to find them.  This is our son the moment he learned to crawl.  He is always attempting to run away.

It's funny when you think about it, because literally our son does not yet walk.  But he can crawl faster than a cheetah runs.  When does he pick up speed and book it out of a room?  Whenever and wherever there is an open door.

At the toddler play area of the Children's Museum, our son sits near the swinging door and tries to crawl out every time another child walks in.  In the library, he presses his face against the glass door and waits for it to be opened.  In the homes of other children that we visit for playdates, he bypasses all of the toys and searches the walls and corners for an exit, through which he will eventually be found.  At a recent birthday part, we had no sooner entered than he had crawled right back down the hallway to the exit.  At the playground, he finds his way right back to the gate entrance and yells in frustration when it is locked.

Which leaves me wondering many things.  From what is he running away?  People?  Noise?  New activities?  Forced interactions?  Why is he so interested in leaving wherever we are?  Why does he cry when I pick him up and bring him back to whatever activity is happening at the moment?  Why does he feel a need to escape?

Maybe I'm asking the wrong questions.  Maybe he is running TO something.  To what could he be running?  My wife answered this one.  Home.  His toys.  His Brainy Baby videos.  His crib.  The place where he feels most safe and in control.

And yet...

Our son discovered our lanai (what Floridians call a screened-in patio).  He rides his little truck to the sliding glass door and needs to be helped over the door's track.  As soon as he is outside, he turns around and wants to be helped over the metal track to come in.  As soon as he is inside, much to my frustration, he turns around to go back out.

Maybe he is not coming or going.  Maybe he is not running away from or running toward something. Maybe he is fascinated by the concept of the door itself?

It just doesn't make sense.

In reality, this means that we often have to leave as soon as our daughter gets excited and engaged in play.  It means that I have to have my son firmly in my grip or I lose him around the corner or through a door.  It means that the one time I got special permission for my son to ride his little truck at the Children's Museum, he turned around in the middle of the displays and zipped toward the glass exit doors.  (I had to run full-speed after him and almost didn't catch him in time.)  It means that when he gets older and goes to elementary school, he will be the child who is announced over the intercom, "We have an eloper.  Blond hair, blue eyes, yellow shirt, Kindergarten wing.  All extra staff please check the hallways and bathrooms."  And hopefully later, "Eloper found. Thank you."

Yes, this is our son.  A runner.  An eloper.  An escape artist.  Coming, going, we don't know.  He enjoys the tightness of being restrained in his carseat.  It helps him feel safe.  He enjoys tight hugs; they calm him down.  Yet he keeps trying to enter the big, noisy world by himself, where the freedom and the sound is overwhelming, through doors that both open and close.  We have to stay on our toes, and watch him closely.  We don't want to lose him beyond the threshold.

The Twin Thing

Our son standing (!!!) on the left

After reading my last post, a colleague with twins contacted me and encouraged me not to worry about my kids' relationship with each other.  She said that it is amazing how deep the twin relationship goes, and referenced her experiences with her own twin girls.

Then we suddenly witnessed it.  It was bedtime.  We had turned the clocks ahead one hour for daylight savings time the day before.  Every night my wife and I alternate which child we put to bed.  We had already closed the window shutters, turned on the bedtime music, and switched off the lights. On this night my wife had our son, who was uncharacteristically upset.  She could barely contain him on her lap while he kicked, flailed, and screamed.  I sat across the room with our daughter, who was content to be snuggled.  My wife asked, "Why is he so upset?"

"I don't know," I replied.

"Mama," our daughter said to me, pointing to the light peeking through the window shutters.  "Sun, bight, side."

"Yes, " I said, repeating as only a parent can, "The sun is bright outside."

"Sleep, night, dark," she continued.

"Yes," I said, "you go to sleep at night when it is dark outside."

"Bight Kah-yee aaaaaaaaaah!" my daughter mimicked her brother's cry.

Whoa.  I looked at my 21-month-old daughter.  "Are you saying that your brother is upset because it is bright outside and you usually sleep when it is dark?"  She smiled sweetly and snuggled closer. I called across the room to my wife.  "She says he is upset because it is too bright out to be bedtime."

My wife consoled our son, telling him that it's okay, that she understands it is still bright outside but it really is bedtime.  He settled down a few moments later, and we put both children in their cribs.

Leaving the room together, my wife whispered, "What exactly did she say to you?!"  I told her.  My wife said with awe, "How could she even know that?"

It is amazing that our daughter could understand her brother and communicate his needs so clearly when typical channels of communication are not available to him, or between them.  Strange that we are so worried about their sibling relationship, then they surprise us with this mysterious twin phenomenon.

A few weeks ago I overheard my wife asking our son's beloved speech therapist about his progress, or mostly lack thereof.  I was surprised to hear that his lack of effort to communicate is not typical at this stage, even with his current diagnosis.  Usually kids are frustrated and eager to learn new ways to communicate their needs  (i.e., using gestures, pointing to pictures).  Our son expresses neither frustration nor a desire to find an alternative way to communicate.  He is an overall happy kid.  The speech therapist noted that this is because we anticipate his needs so well.  She said that our son doesn't have to communicate much to get his needs met in our home.

Hmm.  We have been following the speech therapist's guidance and increasing our wait time.  We have been demanding that he ask for more before we continue reading his books, or before we give him seconds on food.  It's still hand-over-hand baby signing, but we do this often.  But now I wonder.  How much does our son communicate to us through his twin sister?  How many times have we taken her guidance for granted such that we are unaware that she is speaking for him?

My colleague was right.  The twin relationship is amazing.