Chapter 1: THE DIAGNOSIS

Sometime between the ages of 12 and 16 months, Danielle’s behavior changed. It was very subtle and hard to pinpoint. She did not respond when I would call her name. At first, I thought she might have a hearing problem. However, when I would drop a metal object, like keys or silverware, she would respond by turning to see what happened. Perhaps she couldn’t hear certain tones? Is she just being stubborn by not responding to us? The baby gibberish that began at eight months old hadn’t progressed any further. She didn’t say “mama or dada” or anything discernible. She was very active and appeared happy but she had no interest in toys whatsoever. She would interact with her sister and with us but she could not relate to dolls, cars, puzzles or any toys for that matter. Danielle also demonstrated a distinct lack of fear for things that most children would naturally be repulsed by; the dark, bugs and spiders, etc.

At 16 months, Danielle began to walk. With her walking, came a new set of challenges and concerns. One day, I saw Taylor and Danielle standing in the kitchen, spinning in place like ballet dancers. I didn’t think much about it, after all, I worked at the Center For The Performing Arts and the girls had been to ballet performances on a few occasions, so I thought nothing about it. I thought it was really kind of cute. Later that day, I saw Danielle spinning in the middle of our living room.
Danielle’s spinning was so unbelievably fast that I thought she would topple over when she stopped. To my amazement, she stopped spinning with no loss of balance or equilibrium. I was amazed but something about it made me feel really uneasy. I told her not to do it again but Danielle immediately ran into the kitchen and began spinning as fast as she possibly could. I ran to her, grabbed her and physically stopped her from spinning. Once again she jerked away from me, ran into the living room and began spinning as fast as humanly possible.
I noticed something significant in the pattern of her spinning that convinced me that we should talk with her doctor. Each time she would spin, it was always counter-clockwise and she would position her hands and head in the same way each time. This was not random or capricious play. The spinning satisfied some “need” she felt but was unable to express.
We took Danielle to see our family pediatrician when she was about 17 months old. Our pediatrician is one of the finest and most well respected pediatricians in the valley. I have infinite respect and confidence in him as a doctor and a parent. When we told him of our concerns, he told us that he believed Dani’s spinning was part of a learned behavior. He suggested that we wait for a while and see how she progresses. When we left his office, I felt a sickening feeling deep in my core; a feeling of dread that I couldn’t or wouldn’t dare share with Kathy. Deep down inside, I knew Kathy felt that same feeling of impending crisis.
One month later, Kathy took the girls back to visit her family in East Texas. Danielle was 18 months old and full of energy; a typical eighteen month old in many ways, but remarkably different in others. The family immediately recognized the differences. Why doesn’t Danielle respond to her name? Why does she constantly climb on furniture? Why does she constantly spin? She doesn’t talk, at all? With each question, with each awkward moment, with each strange look, Kathy’s anxiety grew. At one point, Kathy’s eight-year old cousin said what we were too afraid to acknowledge. He said, “Do you think Danielle has ADHD?” ADHD? What the heck is ADHD and why is this coming from an eight year old?
Kathy called me from Texas, obviously upset at the suggestion that there was something “wrong” with our baby. Besides, our doctor didn’t even suggest such a thing. “That little smart-alec has some nerve saying something about Danielle. He’d be better off playing with kids his own age rather than reading about learning disabilities. What’s his problem?"
When Kathy and the girls returned from Texas, we scheduled another appointment with our pediatrician. Several months later, at Danielle’s appointment with her doctor, we talked about our concerns and specifically, Danielle’s apparent need to spin in place. The doctor listened intently to our concerns and to my shock and dismay; he told us that he could not make the diagnosis for us. He told us to take Danielle to our local school district and have the school psychologist evaluate her. This really threw me into a tailspin. My daughter wasn’t quite two years old, yet. What was a school psychologist going to tell me that an MD couldn’t? For quite some time I’ve heard that our public schools are a mess and that we can’t educate our children. Now the medical establishment is referring parents to public schools for diagnosis?
Kathy contacted officials at the Morgan Hill Unified School District and schedule time with the school psychologist for Danielle’s evaluation. The school district sent a team to our home consisting of three people: a psychologist, a speech therapist and a third person whose role escapes me at the moment. They wanted to observe Danielle at home, in her own environment. After about an hour, the home evaluation was complete and they scheduled a session with the speech therapist for the following week. After about ten days, we got a call from the school district’s psychologist. He asked if he could stop by and speak with us about Danielle.
Our worst fears had been confirmed; Danielle’s evaluation results were conclusive for severe autism. As the psychologist told us the news, I turned to look at Kathy. Her eyes filled like cups, crocodile tears clinging to the lashes on her lower eyelid. I didn’t know what to think, let alone what to say.
The psychologist gave us what information he could regarding available resources and what our next steps should be. We were scared out of our wits. First of all, there were little or no resources tied in with the schools and he didn’t know of any outside of the school. We had nothing. Secondly, there was only one program in the entire district that was appropriate for Danielle. It was located ten miles away in Morgan Hill. We could put Dani on the bus at 6:10am in order to have her arrive by 7:50am. Or we could drive her ourselves which is a total of forty miles per day. That was a no brainer, we’d have to drive her to school and back. Our plan for Kathy to return to work would have to be put on hold indefinitely.
The next step was a return visit to our pediatrician. Our doctor reviewed the school districts evaluation and immediately referred us to a neurologist to have Danielle further evaluated.
We scheduled an appointment with the neurologist and took their first available opening. The neurologist was very knowledgeable about autism; he grew up with an older sibling who had severe autism. Not only did he have the medical background, but he had the practical knowledge as well. Following his examination of Dani, we sat down with him to discuss his findings. The doctor confirmed the district staff findings, no surprise. He told us that we were fortunate because her autism was not accompanied by any of the other myriad problems that sometimes affect children and that we recognized this fairly early because, “early intervention is the key…” You hear this term constantly, but very few proactive steps are being taking to make sure we intervene early in the lives of these children and their families; I digress.
At this point, I’ve completely left the conversation. The neurologist continued to talk for another twenty minutes and I don’t recall a thing he said. I’m sure it was insightful, I’m sure it was meant to comfort, but I can’t remember what he said. I just remember the twenty minutes or so that he talked seemed like hours. Long enough to think about what we didn’t know and this seemed like everything. Would Danielle ever speak? Where would we get services for speech and occupational therapy? Is occupational therapy where she gets help with motor skill development or is that something different? Danielle is almost three years old, what services are available to her now? Will Blue Shield cover the required services like speech and occupational therapy? If not, how much does it cost per hour? What resources are available through the public school for Danielle? What does a private school cost? How can I….
I felt lost in a dim place that seemed to be growing darker by the moment. Kathy touched my hand, and I was back in the doctor’s office. “Do you have any questions, Mr. Miller?” the Dr. asked. (“Any questions?”, the irony in that statement.)

As I stood to thank the Dr., he said something to me that has never really left my mind after all these years. He said, “you both should be happy because she is a very attractive little girl. That means people will want to help her.” I don’t know why that statement has always bothered me. Perhaps it makes me think of the predatory nature of people, particularly men and boys. This is something you always think about with girls but what about an attractive girl who has cognitive and/or learning disabilities? Perhaps it is knowing that Danielle’s appearance is what will validate her as a person to some people is what distresses me? Whatever the reason, I know I’ve never forgotten what the doctor said that day and I never will.