This is Luke.

He is 11. He remembers the colors of his birthday cake when he was four, but he needs to see pictures to understand the smallest changes in his daily schedule. He endlessly recites lines from Thomas the Tank Engine, his favorite book, but he has never had a conversation. His father, who took this picture, hardly knew what autism was when Luke was diagnosed at age five. Now he and his wife know a lot. Will Luke ever be able to converse? Hold a job? Live on his own? “These are all unknowns,” his father says.

Posted December 19, 2007 by Peter Murphy

Luke’s father, Peter Murphy, is a professional photographer who often shoots for New Jersey Monthly. Peter, 44, and his wife, Valli, their daughters Mariel, 16, and Haley, 13, and Luke live in Hunterdon County. Here he describes his family’s journey into autism’s mysterious and challenging realms.Unlike someone with, say, Down Syndrome, autistic people look like you or me or anybody else. And that is a difficult aspect of the situation, because it can lead to unexpected interactions that really throw people. You don’t realize how strong the social protocols are between people until you have a child who may suddenly say or do anything.

Having two older children, who are perfectly normal but very different, we didn’t expect Luke to be anything but an individual. Everything seemed to be totally fine for the first two years. Then things started cropping up. He became very sensitive to stimuli like sound and light; if we took him somewhere in a crowd, he would just scream incessantly. He would go to a neighbor for day care and they couldn’t deal with him. He went to preschool and he would scream and cry the whole time.

We were unsuspecting. We thought it was just a separation thing. That he was just very attached and sensitive. For the first two years he was speaking, walking, and basically meeting all the milestones. Then he started to regress. He stopped talking, and he just seemed to withdraw and turn inward.

In 1999, when Luke was three, we took him to a pediatric neurology group, and they said Luke had a global development delay, and sensory issues like the sensitivity to sound and light. We were like: What does this mean? What do we do? The answers were unclear. Six months or so later we went to another neurologist, and autism came up. I had heard of it, but I knew nothing about it. At four Luke entered an early intervention program in our school district.

There’s a checklist that has about twenty questions on it, and if you answer yes to fifteen or more of them, your child is autistic. I answered yes to twelve, and I thought, what does that mean? Finally we saw this neurologist who it took months to get an appointment with. She tested him and gave us the diagnosis—he had Autism Spectrum Disorder.

Luke had just turned five. He was growing normally and was physically fine, but his language, social, and fine motor skills weren’t progressing at all. I don’t blame anybody for the late diagnosis. We had talked to our pediatricians about it, and I wish they had been more perceptive, but I can’t say I blame even them. They’re good. It’s just a very difficult thing.

I was stunned by the diagnosis, then relieved there was at least some way to address it. At the same time, my wife and I, even talking to our family, were scared or reluctant to use the term autism. The neurologist said, You can say Pervasive Developmental Disorder, Not Otherwise Specified, or PDDNOS. But people would say: What the hell is that?

At first you wonder whether your child will snap out of it—you don’t want him tagged with this label for the rest of his life. But after talking with doctors and meeting other parents, we realized that with this diagnosis comes a sense of direction, because you can get help and qualify for special school services and treatment.

When you start reading up and understanding more about it, the urgency really kicks in, because the neurology becomes harder to correct as time passes. By the time you’re thirteen the neural pathways are basically set. And that explains why some parents seek these seemingly insane treatments—like animal hormone injections or heavy metal chelation—because they’re desperate and nothing else has worked. I cannot condemn anybody.

As these things go, Luke’s case is mild. Some kids are catatonic; some are self-injurious. Luke is cuddly and sweet. He smiles. He gives us hugs. We’re very fortunate that way. Where it’s difficult is that you want him to understand where you’re coming from; you want some back and forth, and it’s just not there.

He’s rigid that way. If you try to talk to him about something, he’s got his own mind about what he’ll talk about, and it’s usually limited. He will talk about things he likes. He’ll recite lines from Thomas the Tank Engine or his favorite videos over and over. He’s an incredible mimic. He has this fantastic memory. He remembers that his birthday cake—when we went to his grandparents’ house when he turned four—was green and white, with no flowers. He likes the tranquility of being at home alone with his toys.

The one effective treatment is Applied Behavioral Analysis, ABA, which involves breaking things down visually into little steps. I have run around with a camera taking pictures, and we would put them on a board in a sequence so he could understand. There was a sequence for bedtime, a picture for every little thing—open cabinet, take out toothbrush, take out toothpaste, unscrew cap, brush teeth. There was one for the morning—get out of bed, what order to put on the clothes, eat breakfast. If there’s any change in his schedule, he still needs the sequence for the day spelled out in pictures.

He doesn’t really have friends. Early on, there were kids who would befriend him, who would look out for him, but Luke couldn’t figure out the give and take. He still can’t. There’s this total disconnect with how things work socially. Sometimes he’ll say, Stop laughing at me, and we say, No, no, no…we’re not laughing at you. You just said something very funny. He could get very upset by that. I think there’s a lot of frustration in him. It makes it easier to understand why, when he was younger and in regular school, he would push and shove other kids and throw tantrums.

The impact on our daughters is very difficult. Sometimes they tell us how frustrated they are with him or how annoyed they are that  his  needs dictate where we go and what we do, but a lot remains unsaid. As parents, there’s this ever-present thought in your head when you think about going to a restaurant or a museum or almost anything—How will Luke respond to this? I can’t tell you how many times we’ve had to run out of places with him screaming.

On the one hand, it’s been illuminating for our daughters, because it gives them a perspective on the world that most kids don’t have. But it also creates a lot of anxiety and distress, especially at their age, when fitting in is everything. To have a brother who just does not fit in is very tough.

If I drop dead tomorrow, I know my daughters have it within themselves to take care of themselves. But I worry what is going to happen to Luke.

My wife and I will reach a point where we’ve basically had it and can’t deal with it anymore. You just have to walk away sometimes and let it be. That’s where the guilt comes in. It’s this puzzle you can’t solve. You’ve had enough of these one-way conversations. You’ve got to take a break.

Getting away together, just the two of us, rarely happens. Leaving him with relatives—as well-intentioned and loving as they are, they just can’t get their heads around what’s setting him off. It’s actually getting easier as our daughters get older and they can keep an eye on him for us. I imagine they may be resentful in years to come. I try to explain to them that each of us has so many gifts we take for granted, and that if it were you who had these difficulties we would be doing everything we can for you, so please try to understand that we do this because he needs it.

The difficulty for all parents of autistic children is that it’s left to them to figure the whole thing out. The school will do what it is mandated to do by law. The experts have their niches, whether it’s the speech therapist or the psychiatrist or the neurologist. They see things from their specific angle. There’s nobody out there who can look at your child in totality and say, You need this, that, and the other thing.

I can understand why there are a lot of divorces—there are always questions of who’s doing more. I’m fortunate my wife and I generally agree on what we should do. But even when you agree, it’s not easy.

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