“He allowed the examiner to engage in his play and followed along but did not expand upon the plot.  Eye contact was generally reduced in quality and quantity.  Nonverbal communication was also generally reduced or limited…He required prompting and support to engage with the toys presented to him (blocks, Legos).  He built a wall with the Legos, but preferred to play with a car by moving it back and forth on the desk.  He did put his head on the desk and closely visually inspect the car as he moved it back and forth in front of him…on the basis of his behavior during the ADOS assessment, (Howie) met the behavioral criteria for a diagnosis of autism spectrum disorder.” – Howie’s diagnosis report, December 2009

These are not the droids you’re looking for.” – Obi Wan Kenobi, Star Wars, May 1977

Hang on, those quotes will make sense in a moment.

It feels like a lifetime ago but I remember it so clearly.  A gray December day, sitting in the small office of the developmental pediatrician.  I was in the back of the room while the doctor was administering the ADOS (Autism Diagnostic Observation Schedule) to Howie.  Every once in a while she’d quietly tell me what she was doing, but her eyes stayed on my son the whole time.  The doctor tried to engage him in the construction activity, but he just took the pieces he wanted and did it his way.  He had almost zero interest in the Birthday Party activity.  And the tea party?  Forget it.  He was more interested in the cars in the parking lot.

I had no idea what she was looking for or why these activities were so important.  The words “joint attention” and “pretend play” weren’t part of my vocabulary at all.  I just thought my kid liked to line up cars and drive them.  I didn’t know these were red flags.

“See how he’s watching the wheels on the car as it drives back and forth?”

I saw it.  The report was clear.  I got it.

Fast forward to August 2011.

I’m sitting in a different, yet very familiar looking, office watching the doctor administer the ADOS to Lewis.  We’re there because his speech is still delayed and his therapist thought there might be something more going on.  I watch him engage with the doctor as they play with an airplane.  He mimics the doctor’s play skills, but doesn’t take them further.

They take out a birthday cake and try to have a party.  He plays along but refuses to blow out the pretend candles.

In my head I’m screaming, urging him on. We do this at home! Lewis, it’s just like the Lego Duplo cake we make!

They hand him a doll and ask him to feed it.  He just holds it.  They ask him to set a table.  He stares blankly.

I KNOW what they are looking for.

At our follow up appointment for Lewis, the doctor mentions all these things as “red flags” for autism.  I argue with her a little.  I tell her that he’s the youngest of three boys.  We have no dolls in our house and he’s never seen anyone feed a baby.  How would he know what to do?

And the table setting?  Have you seen our house?  It’s a miracle if we all sit down to eat together.

And let’s not forget that a little knowledge can be a dangerous thing.  I have been hypervigilant about the pretend play with Lewis.  Hell, I even wrote about it.

But I didn’t push it with the doctor.  There was enough other “stuff” that qualified him for the PDD-NOS diagnosis.

In my head, though, I never let it go.  This felt like more of an indictment on my parenting skills and not his actual play skills.

Fast forward to May 2012

I’m sitting in our TV room answering some e-mails.  Howie and Lewis are scurrying around in the other room, building something with blocks. The conversation is flowing between them.  They are giggling.

“Let’s get a red block and put it here!”, yells Lewis

“Perfect,” says Howie. “Now, we just need a blanket.”

A few minutes pass.

“Mom!  Come see what we made!”

I walk into the other room to this:

shhh…baby Stormtrooper is sleeping…

They took their “baby Stormtrooper” and made him a crib.  Lewis grabbed the dish towel from the kitchen for a blanket.

“Shhh…we fed him breakfast and now he’s sleeping.”

Take that, ADOS.

Yes, this is the result of much therapy and attention to play skills and conversation.  Both of them have these goals not only at school but in their home therapy as well.

But it struck me that maybe it wasn’t so much a lack of pretend play skills but rather a lack of the “right” pretend play skills.

Or perhaps: “These aren’t the pretend play skills you’re looking for.”

My kids will always beat to their own drummer.  You could hand them a doll today and they may or may not know what to do with it.  They still like to look at the wheels of cars and will tell you the name of a car just based on its logo.  They will build elaborate structures with their Legos but prefer to drive their Hot Wheels through it rather than pretend that people live in it.

But they are playing.  Together.

I’ll take that over a fake birthday cake any day.

Those seem like the “right” skills to me.

Rock-a-bye baby, in the treetop
When the wind blows, the cradle will rock
When the bough breaks, the cradle will fall
And down will come baby, cradle and all.” – Rock-A-Bye Baby nursery rhyme (and a pretty scary one if I say so myself)

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I am completely exhausted.  All in the name of science.

About three weeks ago, I received a letter in the mail from the Interactive Autism Network, asking if we’d participate in a research project through Children’s Hospital.  The study, sponsored by the Simons Foundation, is looking at families with just one child on the autism spectrum in attempt to understand if there’s a genetic or environmental link to autism.  All participants receive an autism evaluation for their child for free. My family fit the research criteria perfectly : only one child with an ASD diagnosis aged 4-17, one or more typically developing sibling older than 4, two biological parents willing to participate, and no other cases of ASD in the immediate or extended family (that we know of).

At first, I put the letter into the recycling bin.  I wasn’t all that interested in putting my family through some research project, and I was somewhat skeptical of the study as a whole.  But something kept bringing me back.  We fit the criteria perfectly.  What if by gathering data on our family, we were able to help scientists find a cause for autism?  What if we were able to help identify ways for earlier detection, and thereby earlier intervention?  I did a little research into the Simons Foundation and the project in general, talked to Tim about it, and decided to give them a call.

I asked all the appropriate questions, and got all the acceptable answers.  Yes, it was all anonymous.  The blood samples and questionnaires were all assigned an ID number so we could not be identified.  The information from the assessment would be ours alone and we could choose to share it with school and/or our doctor if we wanted to.  The blood draw would be handled by Children’s Hospital by a team comfortable working with kids on the spectrum (and 8 year olds who are terrified of needles).  They would even send us a practice kit and a social story for the blood draw.  The kids would be compensated for their participation, and the researchers would come out to the house for the interview portion of the study.   After getting the ok from Gerry about the blood work (five minutes of torture equaled a new Star Wars Lego set in his mind), we set up the appointment.

(speaking of Gerry, we included him fully in the discussion of whether or not to do the study.  His participation was important and we thought he was old enough to understand the purpose of the research and how he could be helping scientists discover the cause of autism.  He thought about it for a long time, as he is apt to do.  He came down on the side of helping kids like his brother.  Couldn’t have been more proud of his thought process.  The only exception is when I told him that the criteria involved having one kid who is on the spectrum and his other sibling not on the spectrum.  His response to me: “well, I know I’m not.  But we don’t know about Lewis yet.”  Ugh.  That was the kick in the gut that I didn’t need).

So today two researchers came out to the house and spent four hours with me and Howie.  One researcher administered the ADOS (Autism Diagnostic Observation Schedule) to Howie, and the other one went over the ADI (Autism Diagnostic Interview) with me.  Howie did great – he spent almost the whole four hours at the table with the woman with just a few short breaks.  On the other hand, I was a wreck.  The questions were incredibly comprehensive and detailed, asking me to recall a million small details of the last four years of our lives.    She asked about his speech, social interactions, and what developmental milestones were met or not met.  She asked for specific examples of speech patterns and moments of aggression.  She asked when we first noticed problems.  She asked four straight hours worth of questions.

I tried really hard to focus.  In so many ways, it was as if I was reliving those years all over again.  I could feel myself starting to fidget, and my body language was clearly showing my discomfort.  I know this because the whole interview was videotaped, and the little screen was turned around facing us at the table so my crossed legs and arms were staring right back at me.  It didn’t help that every question that I answered out loud for Howie I was answering in my head about Lewis.  A little bit of knowledge is a dangerous thing, and I was diagnosing Lewis along the way.

After finishing the ADI, we went through two more questionnaires – one about Howie and one about Gerry.  She gave me a few others to complete before our blood draw day at the hospital, including one social behavior questionnaire that I answer about me and one that I answer for Tim (and vice versa – that should be interesting).  They closed up their video cameras and went on their way around 2pm.  Thirty minutes later, Howie was out for a nap.  He was done.  And so was I.

I’m still having some mixed feelings about the whole thing, even after today.  We’ll finish up the study at the hospital in a few weeks and get the complete report from the assessments in about 6-8 weeks.  I’m not really sure what we’ll do with the information we get.  The scientist in me says that I should just file it away, that the point of participating is to help gather data with the hope of discovering a cause of autism spectrum disorder.  That’s pure science.

Then I remember there is no scientist in me.  Just a parent looking for some answers and some hope for the future for myself and my family. Just like so many other families.

She blinded me with science!”
And hit me with technology”
– She Blinded Me With Science by Thomas Dolby