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Autism diagnosis

Updated: Oct 5, 2023

After I had made up my mind that I was ready to get Tula evaluated for autism, I immediately made an appointment and she was given a diagnosis of PDD-NOS, Pervasive Developmental Disorder, Not Otherwise Specified. (The most recent edition of the Diagnostic and Statistical Manual has eliminated this diagnostic category and now uses the term Autism Spectrum Disorder). I pulled her out of speech therapy and OT and began researching like a madwoman.

My pediatrician advised ABA (Applied Behavior Analysis) therapy for Tula. I had been trained in this therapy right out of college and worked with an autistic kindergartener for a short while. I used flashcards to prompt him to speak and rewarded him with goldfish crackers. I only lasted for about a month in this job since it felt like torture with the slow results and endless repetition, and yet here I was considering it for my own child. I found a clinic nearby that happened to have an opening for Tula. I only needed to secure coverage with my insurer, which became more of a hurdle than I expected.

After numerous insurance phone calls in the midst of caring for the girls, I was forced to take refuge in my car to actually have a conversation and hear what was being said. I brought both girls outside on the lawn to see them clearly from inside the car. Already shaking from the stress, I was finally just getting the information I needed when I saw Thalia run to the back door and pound on it, forgetting I was in the car. I ignored her to finish the call while she started screaming hysterically, thinking she'd been left outside. Tula was crying along with her as I frantically jotted down the information, and, at the end, I was crying too as I spoke with the insurance agent. I raced out of the car, running to my girls, distraught by the time I reached them. After ushering them into the house, I dropped to the kitchen floor crying like I did the morning after Mike left the house. It was an "ugly cry," but every stressful thing was being unloaded and I couldn’t stop. Thalia immediately stopped crying and simply stared at me, then crawled into my lap. This made me cry harder since I felt so guilty about not being there for her when she needed me. Not to mention the fact that I was probably scaring her. When I did calm down, I was able to find gratitude that our insurance did cover the ABA therapy! Tula needed another evaluation by the clinic’s psychologist to make certain she did have an autism diagnosis and that ABA was needed.

This second evaluation also confirmed that she was on the spectrum. It was recommended that Tula be enrolled in the program full time. Full time?? At three years old? Eventually it was decided that she would start at 20 hours per week. This seemed like a lot of work for her, but I was relieved to be getting a break, affording me some one-on-one time with Thalia, which she desperately wanted and needed.

I told the preschool teacher I would be pulling Tula out of preschool to start ABA therapy. She appeared relieved and didn’t seem to care one bit what I was going through. Her response was, “I hope she gets the help that she needs.” I realized that the teacher knew Tula had autism all along. How difficult it must have been to have Tula in her class, even for one month—a complete distraction to the other kids. Still, I was angry at her reaction. In fact, I was mad at everyone. I was mad when I saw a family walking to the park with happy-go-lucky kids—mad and incredibly jealous.

© Copyright A Journey Off the Spectrum 2021

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2 comentarios

“Journey” is the most appropriate term. Add persistence. Faith. Indomitable spirit.

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Every parent of spectrum kids should be reading this.

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