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Our Neurodivergent Family’s COVID experience

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My husband, daughter, and I contacted COVID for the first time 16 days ago, and this is what the experience was like.

My family was very concerned about contracting COVID and how it might impact our daughter. We were careful.

My daughter is 11 and is non-speaking. She communicates by spelling on a letterboard or writing in my hand with her finger. She describes having COVID like this: "I hated it. I couldn't breathe right." At 10 days after symptoms appeared, she is still occasionally coughing. The first two days, she experienced the calm of the Fever Effect, which I wrote about here. Then she was very uncomfortable and emotional. After the worst of the symptoms were over, she was still struggling with dysregulation and emotions due to that.

My husband was the first to contract COVID from an unknown source. He was vaccinated and boosted including the latest bivalent booster. For him, the headache in the first few days was the worst part. This encompassed the time he was also feverish. After this period was over, the head cold symptoms didn't bother him much. He recovered quickly but did stay home from work the whole week to prevent spread and to get well.

I can speak to my experience best. I have had the vaccine and boosters but not the most recent one. For me, I had a minor fever and a minor headache with some joint pain. The head cold symptoms--congestion, runny nose, post nasal drip, ear pain and sore throat were the most intense. It was like a bad cold or severe allergies for about 5 days. I still have symptoms and they have resurfaced a bit in the past couple of days but less severe than before.

The most troubling for me as an Autistic person with intense sensory experiences was the loss of my senses. My ears were stuffed up affecting my hearing. My sense of smell was completely gone by day 5 and started to return by day 12. My sense of taste was impacted and reduced by about half. This experience was troubling and constant. I rely on my senses as all people do but perhaps a bit more than most. And when deprived of them, I feel lost.

We were very careful in avoiding COVID because of known risk factors for Autistics. It delayed our illness and vaccinations and boosters protected us from severe symptoms and hospitalization. Since I still have lingering symptoms, I know there's a risk of Long COVID, but I'm hopeful that won't be the case.

Be safe out there. Stay up to date on your vaccines. Wear a mask when you can. Keep indoor spaces ventilated!

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