Repetitive Behaviors
About four years ago, Linda began engaging in verbal repetitive demands that I had never seen before. She would repeat requests for things like specific toys or familiar places over and over again. When this first started happening, I instinctively chose to redirect her behavior. However, this not only didn’t help, but the more I responded, the more the repetitive demands worsened. I eventually found that ignoring the behavior was the only response that helped these verbal demands stop, a very hard thing for a caregiver to do.
What’s interesting is that I began to notice that the intensity of these demands often occurred prior to pain meltdowns. By observing these behaviors over time, I can now usually tell whether the repetition is mild enough to redirect or whether it is becoming a precursor to pain management. If the repetition is mild, I may answer her or redirect her. But when the demands begin with a distressed tone, loud mumbling, or become relentless, I have learned that this is one of Linda’s earliest warning signs that she is hurting and unable to tell me what she is feeling. What she seems to be doing is repeating the words and phrases she knows best, which are mostly connected to her wants and needs.
Watching Linda suffer in pain is the hardest, most heartbreaking part for me to witness as her caregiver, but managing repetitive demands can be the most frustrating. They can continue for hours, becoming very loud, and this can test my own nervous system to its limit. Through behavioral therapy, I learned to respond and redirect at first, but eventually stop feeding the repetition with continued responses. This is where caregiver self-management becomes so important. Yelling “stop” or reacting in anger does not solve the problem. Reacting this way adds another distressing energy to an already stressful moment. Self-regulation in the middle of chaos has been one of the most difficult practices for me to learn.
Over the years, one of the most important things I have learned is that behaviors in autism will change, appearing seemingly out of nowhere after years of not being present. Learning to closely observe those behaviors has helped me recognize patterns, understand what may be happening underneath them, and respond more effectively. But managing my own nervous system may be even more important, because if I am not regulated, I cannot manage another’s behaviors properly. Self-management on this journey also means accepting that challenging behaviors are ongoing and ever-changing. Knowing this has grounded me and helped me let go of unrealistic expectations as a caregiver. I will always have to observe, self-regulate, and implement behavioral strategies.
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