Updated: Dec 7, 2021
Anytime I had a free moment, I was searching the internet and kept confronting the same scary word...autism. Briefly I had been a paraprofessional for a kindergartener with autism, whom I basically held down in my lap while other students were learning. I quit that job immediately because of how stressful and wearying it was, physically and emotionally.
Tula began speech and occupational therapy (OT) immediately and I had high hopes it would cure her. I pre-prepared the evaluator, reporting that Tula only needed a little help, but was not autistic. The woman, frustrated by my daughter, threw her pen down, and asked, “Well then, what was she diagnosed with?” Tula couldn’t do much of what she was asked to do, kept answering questions repeatedly, or would skip along to a completely different topic. She was asked to take a block off a box. She did grab the block but kept repeating, “Take it off the box, take it off the box,” as she tiptoed around the room. At this point, I was sweating profusely.
Tula scored in the 5th percentile on the preschool language subtest, which was the only test they could get her through because she was so easily distracted. This meant 95% of kids the same age tested above Tula’s score. Therapy was recommended. As the sessions went on, the therapist was not at all patient with Tula and once asked another therapist to “observe.” To avoid overwhelm, they concentrated on playing with only one type of toy. Tula couldn’t handle animals mixed together with "play people," meaning Dora the Explorer frolicking with Pooh and friends was out of the question. She would start screaming if these were combined. Tula invariably had to play with the same toys she finished up with the day before and she always started her day by having the same play person knocking on the same castle door.
Tula continued to recite quotes from TV shows when asked questions, or incorporated delayed echolalia mouthing of other people's words during activities. When jumping into a ball pit, she would exclaim, “It’s Elmo’s turn. Elmo jumped into the balls!” The therapists worked on “yes” and “no,” which Tula didn’t seem to understand. And their solution for her oral fixation, needing to chew or put something in her mouth, was to substitute skin brushing and allow her to use a straw when drinking anything. When eating I was supposed to grind up her food as much as possible so she could suck it up with a straw. The brushing was a temporary solution, but the straw idea seemed ridiculous to me. None of her behaviors were improving, and these solutions were just a cover-up to a bigger problem.
Months went by and she continued to get worse. I decided to pray for advice. I had always been afraid of being stamped with the inevitable autism diagnosis—it scared the hell out of me. I kept waiting for all of this to disappear but it wasn’t going away. I went to bed one night asking for clarity and guidance and woke up the next morning knowing that I had to get her evaluated, a complete workup instead of talking the evaluator out of diagnosing autism. Just having that new frame of mind got me motivated to tackle this head on. I also remembered that out of the many times I was researching, there were a couple of instances when I came across articles about diet and autism. I thought it was crazy but maybe having an official diagnosis would make me look into this a little more....
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