Monday, February 28, 2011

A Dad's Tough Call

The first year after Graham’s diagnosis with ASD was like trying to dig out from some dark wormhole we as a family had abruptly fallen into.   My wife and I were disoriented, shaken up and worried.  But by the end of that first year, I was feeling like I had more dominion over the situation.  We’d found a more accurate diagnosis (SPD), a treatment approach that was working well, and we were under the care of doctors and experts that we trusted.  As soon as I caught my breath, I started thinking about the families who were falling down that same wormhole, about to start probably one of the worst years of their lives.  We’d get calls all the time from some mom or dad who’d been referred by a mutual friend whose child was showing autistic-like behaviors and wanted to pick our brains.  Jennie and I had our spiel down.  She would reassure the mom, tell her she wasn’t crazy, and let her know she wasn’t alone.  I’d talk to the dad, help him get a grasp of the issues, let him know it’s okay if he has feelings about this, and tell him there’s great hope.  And this always felt good. But I wanted a way to reach more parents.  That’s when I decided to take all the video I’d been shooting of our journey and make a documentary film.  When I started making the film, Graham was around three years old.  I thought about how he might feel about what I was doing, and that gave me pause.  But Jennie encouraged me.  Graham could help other kids struggling with the same issues, and what a marvelous gift that would be for a three-year-old to give. 

I made the film, and I’m so glad I did.  It has traveled the globe, mostly by word of mouth, helping to advance the cause of grey area kids.  After a few years of traveling with the film to special needs conferences and film festivals, I decided to make an update video.  Much had happened since the original film ended, and it was the most often asked question I heard:  How is Graham doing now?  So the camera came back out.  I filmed the start of Kindergarten, the IEP process, our attempt with vision therapy, our discovery of a movement based treatment approach.  The original film and the update will be broadcast together on PBS stations around the country starting his April.

This is the breakthrough I’ve been hoping for since we finished the film, the one that will finally get the film to a broad audience.  Yet this has also brought the issue up for me again:  Is this fair to Graham?  He’s no longer three and oblivious.  He’s seven, and he’s in first grade.  He has friends he’s trying to look cool in front of, and he’s come a long way from where he was in the original film.   I don’t want his past to haunt him throughout his grade-school years.  He’s seen his film, and knows dad’s been using it to help other families, and is generally a big fan.  He doesn’t grasp all the issues, but we’ve been upfront with him about his journey, and he’s mostly fine with it all. 

I’ve promised myself that this is it:  no more update films.  The camera has officially gone away.  And while I’m doing what I can to promote the film to the special needs community, and want as many families as possible to see it, I’m saying almost nothing to our little community of families where we live.   I don’t necessarily want his classmates to come in on Monday morning with a head full of questions for Graham. Going forward, Graham’s story will be his to tell.  And I can only hope that, when he’s older, whatever feelings he has about the film and my decision to make it, when he reads the pile of letters I’ve received from grateful parents he feels a sense of having been part of the solution.  But alas, only time will tell.


Erik Linthorst is a dad and filmmaker whose award-winning documentary film AUTISTIC-LIKE: GRAHAM'S STORY will air on PBS starting this April.  For more info visit:


  1. I struggle with similar things when sharing stories on my blog. But know this - Graham's story has helped so many families understand their children when no one else could explain what was happening. Yes, it may not be cool to him now. But someday he'll understand what a difference he's made for thousands of families, and that will be more than cool.

  2. I am so looking forward to seeing your new film. The first one was game-changing for us as we saw our own son in Graham. Our son Alex is a classic "grey area" kid - has been given different dx every time we take him to an "expert". ASD, ADHD, SPD. Finally one doctor told us he has "Alex". He has his own set of symptoms which aren't so easily boxed into a dx. Still, most of his symptoms are sensory. He is also 7 and in first grade and I too struggle with how much to discuss with others. When he was younger I talked about it much more freely. Now I don't want to invade his privacy. I can understand your struggle. However, please know (as I'm sure you do already) that your film has been a godsend for others like us. Thank you and thanks to Graham.