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The flawed evaluation

Updated: Oct 5, 2023

Mike was living in a motel, and the day I kicked him out was the day he stopped drinking (he has been sober for 16 years now!). The girls were too young to grasp what was happening, even as Mike would only “visit” the house and wasn’t sleeping there. After a few months in therapy, along with seeing Mike briefly on the weekends, I couldn’t help but notice the drastic shift in his attitude and behavior. He had been steadily sober since the split and seemed to be a completely different person. After almost six months of separation, Mike came home. One change that occurred during our separation was that Tula’s behaviors worsened to the point that she started biting her hand. Maybe she felt the stress and tension in our home, or maybe she realized her father was absent but couldn't verbalize it or deal with the emotions.

Tula’s pediatrician referred her to a developmental clinic for an evaluation, and I tried everything I could to convince this doctor that Tula did not have autism. I was still terrified of a diagnosis, for then it would be real. I wanted the doctor to tell me that she would grow out of it and that there was no reason to be concerned. But he was concerned about her considerable “self-talk”, limited eye contact, “unusual” sensory interests, speech idiosyncrasies, and inability to consistently respond to her name. As she walked into the examination room, she was reciting lines from Mr. Noodle, the Sesame Street character. I felt a cold sweat sweep over my entire body. The doctor asked what she was talking about and I lied and said she’d just watched an episode right before we walked in. He eventually gave her a developmental disorder diagnosis, but he told me that he wanted her teachers to fill out both the Social Skills and Behavior Assessment rating scales for more input on Tula. He said he couldn’t rule out autism, and wanted her to start speech/language therapy and occupational therapy immediately. That we could do, but obviously I couldn’t go back to see him again, since I knew how the teachers would rate her. I knew very well that her social skills rating scales would tell the truth, and that the doctor would then slap an autism diagnosis on her.

In the fall, the girls were returning to preschool at age 3 and I was hoping and praying that Tula would fit in. The first day I was a complete wreck. Tula still had the same problems with eye contact, hand flapping, and spinning, constant tantrums upon hearing unexpected noises, as well as repeating other people's words, known as "echolalia." I knew Tula couldn’t go to school with her pacifier, so I gave her some gum, hoping it would replace her oral fixation. She lived for her pacifier, sucked on it constantly, and if she didn't have it she'd be trying to put anything she found in her mouth. I waved down one of her teachers to discuss Tula’s issues with oral stimuli, while making her quite aware that Tula had already been through an evaluation and everything was fine—no autism diagnosis. I didn’t want the teachers suspecting anything and chose to talk about her behaviors upfront. The teacher smiled and told me that she was also a gum chewer and that left me a bit more at ease. Maybe this year would be easier than expected!

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