02/11/2012 03:16 pm ET | Updated Apr 12, 2012

Diagnosis: The Day Everything, and Nothing Changed

I had my life planned out in 1994, and it was looking good. I had a lovely, bright, obedient 6-year-old daughter and a boisterous, energetic and "eccentric" 2-year-old son. (He ignored my suggestions for him to "wave bye bye" or to talk, really, after it seemed that he HAD been talking, but that was his independent spirit, and I loved it.) I was ready to start my career, counting down the remaining diaper days, studying to begin studying for a Ph.D. My kids would walk down the street or into the church with their cute, matching outfits and I would be so proud. I had the glow of successful motherhood in a generation of parents for whom successful parenthood was not only important, but identifying. And to be a good mother and also a successful career woman, and to be able to read Greek for a living and read ancient texts, well, it couldn't get any better than that. It was all going as I had planned.

In 1994, autism was not recognized or diagnosed "early." The attitude was "wait and see" because the diagnosis of "autism" invariably meant life-long severe disability, not the "spectrum" we recognize today. It took, often, two or three years for the final diagnosis. And I had barely even heard the word. I hadn't thought about it. I hadn't seen "Rainman." I had no courses in education or special education, and the few words I'd heard about autism in my psychology books were so frightening that I had "learned" the stuff the way I'd learned a lot of unpleasant things in college. I'd read it, taken the test and "flushed." I wouldn't need that information again, and it was just plain unpleasant. I felt sorry for those poor kids and poor parents, but I wouldn't ever be anywhere close to their world, so I could just feel sorry for them and go on.

When did we first know? There are two answers to that question. There's the answer as it evolved, and the answer afterward. The answer afterward is nice and neat and packaged. The answer before, is not neat at all. It's in the recesses of my memory as events, numbness, confusion, walking through everything in a fog and the world slowly peeling away around me. Not all at once. But all at once over and over.

The answer "during," is jumbled in my mind. It's a series of trips to various doctors, reading books, well, at first, challenging myself to go to the childhood diseases section of the bookstore and library and peek for just a moment on the most-feared pages, getting on the fledgling Internet (through Prodigy) and first daring to type the a-word.

We went to the hearing clinic and he was diagnosed as deaf because he didn't react to the sounds around him. I wanted that to be true. I can deal with "deaf." It's just another language -- another culture. But, we realized that he was moving with music, with rhythm. It didn't make sense. We went to the speech therapist who told us that we just hadn't interacted with him enough (which was silly, or was it?) and that we should try throwing a ball back and forth with him and doing other "back and forth" activities. We had done them. I know we had done them. (But enough?) We kept doing them. We went to the neurologist who couldn't work the paper towel dispenser in his examination room, and after an examination in which I don't think he heard a word we said to him, he pronounced "mental retardation." Or, rather, his assistant pronounced it, hesitantly, even though we had told them both that Phil seemed to be, well, reading when he wasn't speaking.

We went home. Phil turned on his older sister's computer. He typed "menu" into the DOS prompt and got a menu. He typed the word of the program he wanted. (We hadn't even noticed him looking at the keys of the computer before. He knew where they were.) He went through all of his sister's first grade computer programs. I made them harder by creating new screens for "find the key for this letter/number" and having them come up on the screen a small square at a time. He watched it once and was able to identify all 36 screens as soon as he saw tiny parts of them. He never made a mistake. He knew the "first letter" of the words for pictures. (Actually, he had memorized hundreds of screens as his sister worked on them, but he hadn't seemed to be watching.)

So, was that bad or good: a 2-year-old performing "miracles." Was that when I knew? Was that when we had a "word" for it?

And, a word for what? What's in a diagnosis? Nothing. Everything. Nothing changed. He was still my boy, and I was still his mom and I still felt exactly about him as I had before. Everything changed. My life was sent reeling in a way that I could not imagine before. I was on a journey into the life of something and someone Other. He was not just a bit different. He was Really Different. And yet, he was mine. I understood my son -- the one I'd carried since nine months before his birth. I did not understand my son at all, and never would. Not in the least.