Life was difficult enough for my autistic daughter
I’m experiencing a new level of fear. For over a decade, my nonverbal autistic 23year-old daughter Zoe has delighted in very long car rides. She listens to toddler tunes on her iPod as we drive around.
But these drives can be fraught with danger. Like many people with severe autism, Zoe becomes intensely angry when something goes wrong with her iPod. She starts banging, grabs my shoulder and pulls my hair as I’m driving. She’s already yanked off two rear door handles, which we replaced. But, like many autism parents, I cope and accommodate her needs as best I can.
Now because of the coronavirus pandemic, all of her activities are shut down: the day program, weekly swimming at the Y, and her favorite, weekly therapeutic horseback riding. So now there are more car rides. And at home, there are more tantrums, sleep disturbance, broken furniture and scratches and bruises. But again, I do my best to handle it.
A recent Sunday was different. Her wild tantrum in the car was the type that required me to pull over and park. I found a large fairly empty parking lot, undid her seat belt and we got out. I gave her meltaway medication her doctor prescribed for agitation and tantrums that last longer than a few minutes. I expected that she would tantrum for 10 or so minutes before she was able to get back in the car.
But not this time. She raged, screamed, hit me and ran through the parking lot — toward the street. I kept trying to divert her, but I could not stop her without literally tackling her onto the concrete. I’m debating, should I call the police for help? Call my husband? It was the first time that I realized I could not control her, could not keep her safe.
This time, we were very lucky. A young woman nearby hollered to me and asked if I need help. She came over, clearly calm and confident and introduced herself. She was an off-duty Rocky Hill police officer with experience with autism. What amazing luck — you can imagine my relief.
Avoiding physical contact, she helped me corral Zoe away from the street. While my daughter continued to grab at my face and pull my hair and clothes, she asked questions, carefully assessing the best way to help. She listened to me respectfully and followed my lead.
When Zoe was less agitated, I was able to give her more emergency medication, and after about 10 more minutes, she was in the car, seat belted and door locked. My new friend left to enjoy her day off.
Then I started to cry.
I try not to dwell on what would have happened without her help. Or what might happen next time. I have so little capacity to control my daughter.
The severe autism life is precarious; it feels we are always just one minute, one tantrum, one impulsive flight away from horrific disaster, a terrible reality that has intensified during the stress of the pandemic.
The young officer brought a glimmer of hope that training, caring and a steady calmness can help us out of our harrowing situations.
I hope all first responders, from police officers to EMTs, and indeed the whole of society, learn about severe autism, not just TV-version autism. Only with knowledge of reality can the world come to our aid when we need it most.
And right now, we need it most.
Adrienne Benjamin lives in New Britain.
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