Monday, January 25, 2016

This is the face of autism

I'm going to get off the topic of photography briefly for a moment if I may. Which of course I may, because it's my blog.

Many of you are familiar with my son. Most of you know him as "The Boy." From birth he's been a character. He keeps the adults and children around him entertained with his bizarre observations and quirky behavior. But he's also a handful when it comes to chores and tasks that require multiple steps. He has frequent meltdowns that to the outside observer look like temper tantrums. After years of counselors, special ed, and finally a full psych evaluation, we have accepted the realization that he is in fact on the Autism Spectrum Disorder. He also has Attention Deficit Hyperactive Disorder and Obsessive Compulsive Disorder. We've got our hands full, but we already knew that. We've suspected this diagnosis for years.

He is high functioning, in the Asperger's range. He met all his developmental milestones as a baby and toddler, which is why the diagnosis is happening so late. He made good grades up through second grade so they had a hard time figuring him out when it came to special ed. He's now almost 10. To most people he seems "normal" but a bit odd, eccentric, quirky, undisciplined. But that doesn't mean he has it easy. This is something he will have to deal with his whole life.

He doesn't make friends easy. He's oblivious to social cues. He had one good friend at school but that friend's mom has forbidden her son from playing with The Boy because, among other reasons, he was being teased by other kids at school for helping my son. She also fears that he may be dangerous. He's not. He's gentle, loving and funny. She's ignorant about this disorder. But that doesn't change her decision.

Unfortunately, some of you reading this may be parents of those children who tease. You may say "not my son/daughter. They wouldn't tease a child for being different." But you aren't on that playground. You really don't know.

I spent some time with my son during recess today. We walked around and talked about what we saw. I could spot the "different" children instantly. They were usually alone. Sometimes content with that, sometimes not. The boy digging in the gravel, building pyramids. Alone and happy that way. The girl wandering around with her head down, looking up occasionally to watch the groups of giggling girls running around. She'd smile at them, hoping for an invite. But then return to her lonely wandering when no invitation came. Alone, but not wanting to be.

Another girl spent her recess alone, walking back and forth on the playgrounds edge, balancing herself on a straight line. Perhaps happy that way. She never looked up, never acknowledged anyone. My son left me once. To ask his lone friend if he could play with him. He returned to me seconds later. The answer was no.

I suggested to my son that he ask the boy playing in the gravel to play with him. He declined. I suggested he ask the girl wandering alone if she'd like to play. He declined. He didn't know how to make new friends. He shrugged with his head down and kicked some dirt.

As with most children with Asperger's, he's extremely intelligent, but his grades don't show it. He has trouble completing his work, staying focused and remembering to turn things in.

Many of our most brilliant artists and creators are just like him, or were at that age. Darryl Hannah (the actress), Clay Marzo (pro surfer), Tim Page (Pulitzer prize winning author), Courtney Love (alternative rocker), Matt Savage (musician), James Durbin (American Idol star), Tim Burton (creator of Nightmare Before Christmas among other masterpieces) and the one and only Dan Aykroyd. The list goes on and on. Some day they'll add my boy to the list of talented, prominent people with autism.

When The Boy was 7 he made a zombie movie with my iPad. It was without a doubt the most entertaining short film I'd seen in ages. At that time he said he wanted to be a film maker. He could be amazing if he pursues that path.

We had him enrolled in drum classes for a while. His teacher said he was a natural. He wrote songs and played the beats on a full set as he belted out his favorite original tune "The One Thing I Don't Think About is You." It was a brilliant break-up song. He could be a talented drummer in a famous band.

He loves video games and can master games quickly-- Often announcing to us a day or two after receiving a new game that he had "beaten" all the levels and was done with it. But he wishes it had more levels because it was fun. Perhaps we should stop buying and just rent them. He could have a career as a game maker.

He's interested in a lot of things that other kids his age are interested in -- comic books, games, super heroes. But not sports. He tried baseball and had fun at first -- until it got to be tedious. We had to forfeit a game because he refused to take the field for the final inning and we didn't have another player to take his place. He just decided he was done. That was not a fun evening.

Since the diagnosis we've come to terms with the fact that he will have to work harder his whole life at mundane tasks like homework, getting ready for bed, leaving the house every morning. That he will not do things the way other kids do and eventually other adults do them and that's okay. He's proud of the fact that he's different. "Different is good," he tells me.

We've found some good community resources to help us teach him ways of working with his "differentness." People keep telling me that he's "lucky" to have me and Jayme as his parents. But in my eyes, I'm the one who's lucky. I get to be his mom.

Lisa On Location Photography


  1. This was beautifully written. My boy, now 25 is also on the spectrum. He was not diagnosed until he was 22. High functioning autism is what he is "labeled" as on his disability paperwork. He is smart, strong, and follows directions, however, attention span does not allow him to work independently as he has to be kept on track, something no employer has ever been willing to do. I raised him during a time that no one, including me, had heard of "the spectrum" so he was diagnosed at different times during his life with different disorders ranging from deafness (not!), retardation (give me a break!) we went all the way to him being accused of just being lazy. Things were tough for him all the way thru the 3rd grade and I saw many of the same things you described. It broke my heart. We moved to a very small community during the latter part of his 3rd grade year. The kids here took him in & made him one of their own, the teachers, for the most part took their time to help him or send him to a resource teacher when he needed. His 5th grade teacher would call me every 6 weeks to go through his desk & find all the papers we knew he had done but not turned in. He graduated in 09, he will always live with us at home, but he has the life skills he needs, and being in this community with people that know him (they all just think he's shy) has helped his self esteem tremendously. I wish you & your boy much luck!

    1. Thank you for sharing. I'm so happy your son found his place in a great community!

  2. He's a great kid and you're great parents.

  3. Beautifully written, Lisa. I let my princess read it so she might understand what others go through. I pray my child wouldn't hurt anyone intentionally, but you're right, we're not with them most of the day and peer pressure is intense. I've watched "What would your child do?" and parents are sure their child will make the right choice and are saddened to watch them succumb to peer pressure. I pray your boy knows just how truly awesome he is!! I love reading the stories you post about him. Thanks for sharing!

  4. Thank you Tanisha. It is hard on the kids -- for both the teaser and the one being teased. And it's hard to befriend children who are different. They don't play the same as other kids. Thank you for doing your best with your princess!

  5. This post really touched me! About two years into our marriage, my husband, Daniel was diagnosed with Aspergers(high functioning autism according to the DSV-5). I felt helpless when people would get up and leave when he tried to talk to them, or made less than kind comments when his actions were less than perfect. Many laughs and some tears...maybe a lot more tears at times have made me realize he is a truly gifted individual despite his limitations.

    So when I read stories about your son, it makes my heart just melt. I'm glad society has become more tolerant to help nurture his individuality and has attempted to change those who cannot accept this gem of a young man. Thank you so much for writing this article.