Monday, February 24, 2014


What's in a meme?

There is so much talk about Autism as an "invisible disability"

You cannot diagnose autism from a picture or photograph.

However... Something I've noticed over and over again about taking pictures of my son is the things you can see.

The first picture is fairly recent. It was taken at the California Science Center in Los Angeles about three months ago. It wasn't staged or posed and I didn't realize how great a picture (or how much it says) it was until I was downloading it to the computer a few days later. I love the way he is standing away from the crowd and the light is shining on him... a spotlight, or angelic aura, emphasizing his hair color.

The second was taken by a friend at a birthday party when Jack was 3. He was still in the process of being diagnosed (or at least we were still in the process). As a side note, this was the party that a complete stranger said to me "When I'm not drinking at my grandson's birthday party, I'm a psychologist. I just want you (Julie and I) to  know... You deserve to be here. He deserves to be here"

( I wrote about that initial encounter before, you can read it here)

I've never spoken to the man that said that to me since, but I remain close with his daughter and her husband. They are an incredible family.

And to "Rachel's" father... I am eternally grateful for the words I needed to hear. Grateful for the words I've stolen as my own whenever I meet a new autism family. Words I tell myself and my son when we're not doing so well at the restaurant, or in the classroom, or at OT...



I lost track of my post.

In taking hundreds of pictures of the boy, I've noticed a few similarities in his pictures.

Lack of Eye Contact

This is an easy one, almost cliche. It is always a challenge to get Jack to look at a camera. It's a challenge to get my 4 year-old to look at the camera too, but she eventually (even if reluctantly) always will. You just have to hope you're catching the right time with the boy.


Notice how straight his back is in both pictures. It's a very unnatural stance (especially for a child that is constantly moving). Pay attention to Jack's feet in the first one. He's standing on his heels. We talk about "tippy-toe" walking a lot with our kids... do you know why? Here's why. Many of our children have poor proprioceptive processing (a Sensory Processing Disorder). They have difficulty knowing where their body is in space. If I close my eyes, put my hand out, and wiggle my fingers, I still know where my hand is, what it is doing, and how to manipulate it (proprioception). When your body becomes "blurry" in space, you will counteract by placing the least amount of your body against the stimuli as possible... hence the "tippy-toe" walking... hence the "finger flicking"... hence the "walk-walking" with one finger... hence the fine motor tool aversion (a fork, or a pencil).


This is the dead giveaway. When I was younger, I did a lot of acting. One of the first things they teach you about being on stage is what to do with your hands. Take a look at the hands in both pictures. Constantly seeking reception or stimulation.

What I would like to point out, therapeutically, is how far he's come in 4 years. OTs work on this crazy little thing we call Proprioceptive Processing Disorder. They work to desensitize the "lost" sensation. They work to ground it. At 7, Jack holds his hands together to ground them. At 3... it was all flaps and flicks.


Pull up a few pictures of your kids... Do you see these things too? So, no, it's true that you cannot diagnose autism from a picture or photograph... but sometimes you can see it.

Wednesday, February 5, 2014

Everybody Hurts

A Tale of Two Victims

A Tale of Two Bullies

I went to an incredible public elementary school, a sub-standard public middle school, and a good public high school, an average public (State) university for undergrad, and an amazing public (State) university for grad school. I have no personal experience with "private schools"... at any level of education. I am proud to say that I am a product of California public education from 1979-1996. I never once felt that I was denied any opportunities to pursue any futures... heck, I was even encouraged once in awhile. But after 3rd grade, or so, it was what I put in to it that dictated what I took out of it. I guess my parents had a little something to do with it as well. Many teachers and professors were amazing and encouraged me to pursue things like the arts, and some weren't. But I learned quickly that I could just do what they asked or required and wouldn't have them again. "Bad" teachers didn't hate me (like my angst-ridden teenage mind was convinced), they simply didn't care about me... and I could get over that.

In High School, there were two students I want to talk about. One was a friend. One was not a friend. Both were special needs, either undiagnosed and lost in the system, or ahead of their time and fully included. "Billy" was in the band with me (hey, believe it or not, I haven't always been this cool). Billy was an odd-duck. Billy used to greet us every morning referencing how many days it would be to General MacArthur's birthday. Billy went on a band trip with us to Sacramento and somebody mistakenly admitted they didn't even know there was a Sacramento County, to which Billy listed all 58 California Counties. Billy was an average musician, a good student, a terrible athlete, a decent jokester, spoke with a sing-song voice, got lost/overwhelmed in a lot of social situations, struck out with the ladies, but was one of the gang. I never felt that Billy "had my back", or would "be the first to help me move a couch", but he was a friend.

He was one of the gang.

Today, some of my friends might say to me "Hey, Jaye, do you think Billy had Aspergers?"

But in 1992, we didn't know what that was.

Billy had an older sister that was in my class... and had been since 3rd grade. And I loved her and would have done anything for her. I remember that sometimes she and Billy would bicker in band. It wasn't really bickering, at least with any sort of back and forth. It was more of an exasperated "Billy, I don't care. Stop talking".

But she loved him, watched him, protected him.

And so did we.


"Sally" was not in any of my classes, but we had Physical Education and assemblies together. She was neither as bright nor as articulate as Billy. She was very physically intimidating for a girl. She was picked on, a lot, and as far as I knew, didn't have any friends. I can tell you honestly that there were three separate occasions where I decided I was going to be the one to get to know her. I decided I was going to be the better person, and put my own fragile social standing on the line to become her friend, or include her, or get to know her. The first time I spoke with her, there was a brand new band coming out of Seattle that we were all wild about called "Nirvana"... I asked Sally if she liked music... she told me to "go fuck myself". There were two further attempts to reach out, both were met with similar (albeit not so vulgar) responses.

Sally was mean. Sally liked to fight (or at least never back down from them).

Ironically, Sally had an older sister, too. She was in my class, but I didn't know her very well, and, to my knowledge, she never mentioned Sally.

One morning, before band practice, Billy came hustling around the corner, mumbling to himself.

"What's going on, Billy?"
"Did you know that today is 315 days and 85 years to MacArthur's birthday?"

And Sally came around the corner.

"You're stupid and nobody likes you" She caught her breath, looked at me, then looked back at Billy, "You don't have any friends"

And Sally stormed away.

I turned to Billy and asked him if he was okay. He told me she yelled at him and chased him every now and then, but was fine.

I assured him he had friends.


I never saw Sally again. It was near the end of the school year and we didn't have PE at the same time anymore. I didn't see her at graduation and, sadly at the time, didn't care.


There must be some reason I told you these stories, right?

A few months ago, I got the alumni magazine from my Undergraduate University. There was a picture of the the community band on the front cover... and there was Billy. Smiling behind his trombone. Comforted in his sea of normalcy. Maybe he's an engineer now, maybe he's a professional musician, maybe he's an historian, maybe he still lives at home... But there he was. And it made me smile.

It made me think of Sally, so I googled her. I asked a friend or two that still live in town if they knew where she went. Nobody did.

I found her obituary. She passed away in 1999. There were no details. There was no epitaph. There were no news articles. Her obituary read the way I had known her... alone.


There isn't a day that goes by since my son was diagnosed that I don't think about Sally. I think about how sad she was. I think about how mean the world was to her. I think about how unfair life was to her. I think about how I could have done more to change that.

And then I think about how mean she was... to Billy.

To me.


Social status is so important to children. I think of  Sally. So picked on, so alone, so misunderstood, so abandoned in a world that had forgotten her, that she had no options but to lash out and pick on those she perceived as weaker.

And I watch my boy...

And I don't know how to tell him that his actions (although not intended) can be perceived as bullying. I don't know how to tell him that EVERYONE feels alone sometimes. I don't know how to tell him that EVERYONE hurts. I don't know how to tell him that EVERYONE has their own story, when he has so much trouble discerning perception in the first place.

Tell him he is "one of the gang".

I can only model...

Good Lord. Please.

We can only model.