It was mid May of 2002 K was scheduled to visit UC Davis MIND institute for a full evaluation. In advance, we filled pages after pages of forms. The appointment was 8:00 a.m. My husband and I took a day off and arrived about 30 minutes early. At that time, MIND institute didn’t have its own building, so it operated on the basement of ambulatory surgery center. When we went down the elevator, I noticed that MIND institute was located right next to ultrasound department, where I had ultrasound exam when I was pregnant with K. I felt like I was drawn to a gate to a hell, being sucked and couldn’t come up forever. I know this type of expression really offends many, but I must be honest. That was what I felt.
After we checked in, we waited in a waiting room full of good toys. But K didn’t play with none of those, except one puzzle. I believe it had a fish drawing. For whatever reasons, he was fascinated with this particular puzzles and even though I had many toys with me, he wouldn’t let it go.
We waited. And waited. Then we were called and taken to an exam room. Then we waited. Nurse told me that the doctor was stuck in a traffic. Oh well, I think traffic problem is a norm in Sacramento. The developmental pediatrician finally appeared around 9:30 a.m. We were already exhausted.
The doctor looked young, maybe in early 40’s. She had a refreshing voice and cheerfully greeted me. Too cheerful for that occasion. She reviewed what we were there for, and explained what will happen. And then let us sign a release of video, and default was to use the video for DIAGNOSTIC USE ONLY.
Then while waiting for a psychologist to perform a test (it turned out to be ADOS, of course I didn’t know such a thing), we played with a pop-up toy, like this. It had sesame street characters instead of farm animals. This was one of the toys I brought. K grabbed my hand to press the button to pop the character up. He repeated, over and over. That’s when the doctor came in again, more cheerfully than ever. She told me that what K did was very interesting so she would want to use it for educational and other purposes (like presenting in academic conference), too. So I signed a new release approving such use, not just diagnostics. I wasn’t happy at all with this attitude.
Finally a psychologist, a tall, well-dressed hispanic woman with curly, long black hair. She donned a little more serious face when she greeted us. Then she started a test. She changed her mask to a cheerful, child-friendly face and brought a toy up. “Hi, K. Let’s play.” At every play, she filled a form. It seemed like the form itself was a flow-chart, that determines the next test based on the current test result. I really don’t know how ADOS works so I’m not sure if this was correct or just my impression. She was very careful checking the chart.
One test that shocked me was a birthday cake. The psychologist brought up a plastic birthday cake and K, of course, didn’t blow. I felt, “what’s wrong with not blowing a birthday cake? We’ve done only one birthday celebration at home and he was one. He had never been to other’s birthday party. Does this determine if he was autistic?” The test was mostly focused on social skills, like playing with a doll (“we don’t have a single doll in my house!”).
By the time test was over and the psychologist left the room, her face looked doomed. I didn’t need anything further. Her face told what she was going to say. At the same time, I felt rebellious with the fact that the tests contain some cultural contexts like blowing birthday cake. That was a disadvantage for K. Looking back, this was a typical symptom of DENIAL. The characteristics of DENIAL is that the person who denies doesn’t think she is in denial.
To be continued.