Autism: A Family's Journey. Michael Terrill

tell me that there’s nothing wrong with him, because I’ll just go to someone else.’ J.R. was sitting in a chair, and the doctor had a book in her hand and said, ‘Hey, J.R., give this book to your mom.’ He completely ignored her. She tried very hard to engage him and get him to play with toys. I don’t think he even realized that a lot of them were toys, because he wouldn’t play with toys. She would try to get him to do the stacking cups—you know, the kind of things that most children love to do—and he couldn’t do it. He couldn’t do any of it. She looked at me and said, ‘Yeah, there’s something going on here.’”

      Lori continued, “He wasn’t talking. He didn’t say those words that you’re supposed to have when you’re two years old. His eye contact was horrible. He opened up the cupboards in the kitchen. The doctor did not use the term “autism,” but I’m sure that it was in the back of her mind. “That’s why she started by spending him to a speech pathologist and then to a psychologist—to get him diagnosed.”

      “We got the diagnosis when we met with the doctor again. That was sixteen years ago now. In the report, we saw that his speech level, at two years old, was that of a nine-month-old child. It didn’t take too long for her to say, ‘He’s a great kid, but he’s mildly to moderately autistic, and he’s mildly to moderately mentally retarded.’”

      This memory brings tears to Lori’s eyes. She continued, “The doctor told us to go home and make sure that J.R. liked his room, because he was going to go in and never come out, and he’d probably be in an institution by the time he was seventeen.”

      Jim, also tearing up at the memory, adds, “How the hell can you tell me that? The kid’s one and a half, two years old. I couldn’t believe they were making that kind of diagnosis—not so much the diagnosis of autism, but that they were so damned sure what the results would be.”

      One memory stands out as especially painfully for Lori. “There was a park right around the corner from our house, in Tempe, Arizona. After we got the diagnosis of autism, I was driving by, and there were middle-school-aged boys playing football in the park. I watched them running around, having fun together, and thinking to myself, ‘He’s never going to play football.’ And I went home and cried.”

      Lori’s sister, Ann Monahan recalls “Lori called me to tell me about it, and I didn’t really understand it. And so for me it was a little weird.” Tearing up, she admits, “At the time, I had to look it up, because I thought maybe he was going to die—that he was never going to be okay. And this was this beautiful little boy whom I had just seen. The whole thing was wrong; it didn’t make any sense.”

      Learning on the Job

      Laurie describes those early post-diagnosis days. “What was autism? I had no clue. I had absolutely no idea. Is it developmental? Is it psychological? I truly did not know. None of my friends had ever had children with autism. It wasn’t very prevalent at that time. One in 10,000, I think. It wasn’t like it was something that was happening every day, like it is now. I read a lot of books, went to the library, did whatever I could to try to figure it out. But if you think about 16 years ago, the things you read were pretty damned scary.” Referring to a widespread and discredited early theory on autism, Lori remembered, “There was one book that called it the ‘refrigerator mother’ syndrome, blaming the mothers of children with autism for being cold and distant. That was not fun, to have it called my fault.”