Tuesday, July 15, 2008

Adventures with Autism: The Beginning

My daughter, Diana, was diagnosed with autism in December 2000. She was 3 years and 4 months old. 

She is our first and only child, so we had nothing to compare her behavior to, nothing to look at and say "something's not right, here." When she was 2, her pediatrician insisted we have her hearing tested, because she didn't have the number of words expected of a two-year-old. The test confirmed what my husband and I knew: she heard fine. Next, the doc wanted us to take her to a speech pathologist. She was 3 then, and the test results were that her language was no higher than that of an 18-month-old. The pediatrician then wanted us to see a child psychologist, "to see if there's anything else going on." That's how she phrased it, no warnings of autism, just "anything else going on." She gave me a number for the University of Chicago to make the appointment.

When I called the U of C, I was told the waiting list was at least 6 months. This was completely unacceptable. Now that the doctor was being so determined something was wrong (and we agreed that her language was not where it should be), I wanted to know what it was. At the time, my brother was dating a woman who worked as a physical therapist. She recommended someone that she had worked with in the past. So I called him, and while there was a wait, it wasn't 6 months. 

I accompanied Diana on all of the testing sessions, answering questions, often on the floor while interacting with her. I filled out a long questionnaire - something like 600 questions. It was strange knowing I was as much under a microscope as she was. (Had I done something to make her like this? Did I not talk to her enough, letting her play alone as she desired?) Turns out that I was doing everything I could, under the circumstances.

The night we got the diagnosis, the doctor requested that my husband and I come alone, so there would be no distractions. Diana stayed with my brother and his girlfriend. I had to drive myself, as Marc was coming straight from work. The December night was cold and sloppy, the snow was more slush by the time it hit the ground. The roads and the traffic were crap. The psychologist was actually quite gentle with his pronouncement. He led us through his findings, even commenting on something I'd said in one of the sessions. "It's like playing a game where I don't know the rules," I'd said about trying to play with Diana. He told us what he'd observed, things we had observed: lining up markers and crayons but not coloring, playing with the wheels of cars but not rolling them, flipping dolls eyes open and shut but not playing with the doll. The lack of significant eye contact, the dislike of being held, the absence of pointing behavior. By now, my anxiety was high. I'd spent the afternoon researching autism online. He gave us test results, comparing her with other normally-functioning children. I knew. I knew what he was about to say. Then he did, and the rest of that evening is a little blurry.

I remember shaking his hand, eyes burning, thanking him. I remember driving in the slush, crying, trying to see the road. Arriving at my brother's to collect our child, tersely telling him something along the lines of "he said she has autism, I can't talk now," and driving her home. I don't remember what we did with her once we got to the house. I remember calling Mom and Dad - Marc was in his office ordering a pile of books off Amazon. My parents' first words were "What can we do?" I was steadier then, than when I was driving. My science background from high school and college saved me; I was matter of fact, said we had a lot of reading to do. The call Marc made to his family was not as good. My mother-in-law took it hard, still does. It was the worst night of my life.

During the Christmas holiday, the story was repeated, over and over. People expressed sympathy like someone had died. I had to be strong because the alternative was not an option. I saved my sobs for when I was alone. I still do.

That February, Diana started school in the special needs pre-kindergarten class. I fought with the insurance company to get her speech and occupational therapies. (Evil, penny-pinching, number-crunching, pencil-pushing...) "We don't authorize services for speech delays," I was told. "She isn't speech delayed, she's autistic. The delay is the symptom, not the diagnosis," I raged. "You have the doctor's diagnosis in her file!" "No, we don't." So we faxed everything - again - along with information from the DSM-IV, with the full definition of autism, and anything else the therapist could think of. I won. But was told we'd have to do it all over again in a year's time. I'm still winning. This is my daughter, and if her (new) pediatrician thinks she needs these therapies, she will get them. Mom and I were prepared to drive to the insurance company's HQ, and sit with a screaming, out-of-control autistic child in their lobby until they agreed she needed the services I was requesting. It was never necessary, thank all that's holy, because the truth of the matter is, Diana is really well-behaved (except when she isn't) and getting her to become a demon-child on cue would have been a dicey proposition. She typically reserves all her really nasty behavior just for me, and sometimes Daddy.

Diana is almost 11 now, starting 6th grade in a special needs class at the middle school this fall. Puberty has reared its ugly head, and that scares me more than about anything else ever has. The roller coaster ride of the last 8 years has made me, at turns, depressed, angry, hopeless, hopeful and scared. It's affected our marriage; how could it not? But we're sticking, clinging to each other when we can, because no one else would put up with either of us. It's a hard road to travel, but even harder if you have to do it alone.


Kuanyin Moi said...

My prayers and praise go out to you and your beloveds for the road you've traveled hasn't been an easy one...but there's light at the end of the tunnel...and you're getting there. Mahalo for your visits.

Wendy said...

Mahalo nui loa to you for taking the time to visit, and for your kind words. Our trip to Maui last year was the first vacation we'd taken - just the two of us - since Diana was born. Revisiting the island through your photos helps me remember that precious week to ourselves.