My daughter was diagnosed with Autism Spectrum Disorder (ASD) just two weeks after her third birthday. At that time, aside from a verbal delay and a lack of eye contact, she didn’t exhibit many of the typical behaviors associated with autism. We can refer to that period as the honeymoon phase, and let me tell you, it didn’t last long.
It’s hard to pinpoint whether it was our newfound awareness post-diagnosis or simply that our daughter was growing older that led us to notice her behavioral changes. Regardless, shortly after her diagnosis, we began to witness more of the classic traits associated with autism.
Her frustration grew as her ability to communicate remained limited. Sensory issues began disrupting her daily life, and her eating habits took a turn for the worse. In her struggle to express herself, she started exhibiting physical behaviors towards me, her siblings, and even herself.
At this point, I’m all too familiar with the physical marks left on my body—bloody noses, scratches, and bite marks. During one particularly bad episode, a doctor questioned me multiple times about the bruises on my arms and neck, suspecting domestic abuse. I had to explain that those were the results of my three-year-old daughter’s struggle with autism, not violence from my husband.
Leaving that appointment, I found myself in tears, overwhelmed by the realization that my daughter’s frustration had reached such a point. It wasn’t self-pity I felt; rather, it was heartbreak knowing she was trying so hard to convey her feelings, and as her mother, I was struggling to understand her. Even now, moments of despair occasionally overwhelm me.
When we’re out in public and I notice her agitation rising, it’s not her actions that distress me as much as the judgmental looks from strangers. Their expressions seem to scream, “If my child ever acted like that…” I wish they understood how fortunate they are that their children can articulate their thoughts and feelings. My daughter’s outbursts arise from a profound desire to communicate, a privilege she currently lacks.
I’m not suggesting that self-harm or aggression are healthy coping mechanisms for an autistic child, nor should we ignore these behaviors. However, it’s essential to recognize that these actions are not merely the result of unruly behavior; they require a different approach than your typical temper tantrum.
When we observe such behaviors, we must delve deeper to uncover the underlying triggers. This process can be incredibly challenging. While there are many beautiful aspects of autism, these challenges are not among them. Unlike some who believe autism is a superpower, I see it simply as a complex part of my daughter’s identity.
As she continues to struggle with communication, I can see her frustration building day by day. I can tell when she starts to cry and lightly hit her head, which signals that I need to step in. I attempt to communicate through pictures, sign language, or providing items that comfort her. There are days when I run back and forth to the kitchen multiple times for meals, trying to determine what she wants—this can often feel like a desperate situation for both of us.
Of course, I work closely with her pediatricians and therapists to address these challenges. We’ve discovered that my daughter is a sensory-seeker, and providing her with deep pressure input helps her regulate her emotions. When she resorts to scratching or pinching, we encourage alternative actions that provide similar sensory satisfaction, like clapping or squeezing her hands.
I’ve invested countless hours researching Autism Spectrum Disorder, read books, and listened to the perspectives of autistic adults. Yet, it’s difficult not to feel inadequate when my child continues to grapple with self-harm and outbursts. Knowing that these behaviors are typical for a nonverbal child with autism is little comfort; it remains one of the most heartbreaking aspects of my journey as a mother.
While I don’t have all the answers, I recognize that understanding autism better today than I did a year ago is a start. As I strive to communicate with my daughter, I remind myself that she is doing her best as well. Together, we will navigate our way toward effective communication—words or no words.
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Summary:
This article reveals the often-hidden challenges faced by parents of children with autism, detailing the emotional and physical toll of managing communication difficulties and behavioral issues. It emphasizes the importance of understanding these behaviors as rooted in a child’s struggle to express themselves rather than mere misbehavior. The piece advocates for deeper awareness, compassion, and support for both the child and their parents.