The Hidden Struggles of Autism That Parents Often Conceal

pregnant woman throwing toddler in the air sitting by a tree

My daughter received her Autism Spectrum Disorder (ASD) diagnosis just two weeks after her third birthday. Initially, aside from a delay in verbal communication, minimal eye contact, and occasional passivity, she didn’t exhibit many of the classic signs associated with autism. Looking back, I can only describe those early days as a honeymoon phase, and it quickly faded.

I can’t pinpoint whether it was due to our newfound awareness or simply her growing age, but shortly after her diagnosis, we began to notice a shift in her behavior. The stereotypical traits of autism became more apparent. As her communication struggles intensified, so did her agitation. Sensory sensitivities disrupted her daily life, and her eating habits underwent significant changes. In her frustration, she began to lash out physically—toward me, her siblings, and even herself.

At this point, I’m well-acquainted with the marks left behind—bloody noses, scratches, bite marks, and head-butts have become part of my reality. During one particularly troubling visit to the doctor, she inquired multiple times about the bruises on my arms and neck, suspecting domestic abuse. I had to explain that these injuries were inflicted by my three-year-old daughter with autism, not my husband.

Leaving that appointment, I felt overwhelmed with sadness. It hurt to see my daughter struggle to express herself. I didn’t feel sorry for myself; rather, I felt a deep sadness that I, her mother, was unable to understand her needs. At times, those feelings of despair still creep in.

When we’re out in public, it’s not my daughter’s behavior that troubles me—it’s the judgmental glances from bystanders. Their expressions silently convey thoughts like, “If my child ever did that…” I wish they could understand that my daughter’s reactions stem from a desperate need to communicate her feelings, a privilege she currently lacks. Her behavior is her way of trying to connect.

I’m not suggesting that self-harming or aggression are acceptable coping methods for children with autism, nor can we overlook such actions. However, it’s crucial to recognize that these behaviors are not merely the result of bad behavior; special needs parents cannot treat these episodes as just another tantrum. There’s a deeper, more complex issue at play.

We need to examine these behaviors closely, seeking the underlying causes. We must identify triggers and keep detailed notes about these incidents. And believe me, this is no easy task.

While there are many wonderful aspects of autism, these challenges are not among them. Perhaps my perspective differs from many other special needs parents, but I can’t subscribe to the notion that autism is a superpower. This idea often highlights quirky interests while glossing over the significant obstacles that autistic individuals face.

A child with autism can only attempt to express themselves so many times before frustration sets in. I witness this escalation daily; I see it in her tears and in the way she lightly hits her head—a signal for me to step in.

I strive to bridge the communication gap through pictures, gestures, or by offering comforting items. There are days when I find myself making five or ten trips to the kitchen, desperately trying to discern what she wants for breakfast. It’s a challenging process—“You get what you get, and you don’t throw a fit” simply doesn’t apply to kids with ASD.

I’ve collaborated with her pediatricians and therapists to address these issues. We’ve discovered that my daughter seeks sensory input, and deep pressure often helps her feel more grounded. When she resorts to scratching or pinching, we encourage alternative actions that provide similar sensory satisfaction, such as clapping or squeezing hands. If she hits her head, I gently apply pressure to the sides of her head or use a compression vest. Additionally, we have a safety helmet to use during self-harming episodes, ensuring her safety during these moments.

I’ve read extensively, listened to the insights of autistic adults, and devoted countless hours to understanding Autism Spectrum Disorder. Yet, despite my efforts, I often feel inadequate as my child continues to struggle with self-harm and aggression during meltdowns. Recognizing that these behaviors are typical for a nonverbal child with autism is little comfort when it comes to my role as a mother. It’s gut-wrenching to witness, and it pains me to know this is one of the most challenging aspects of my daughter’s childhood.

Right now, I don’t have all the answers. There are no quick fixes for the frustration stemming from years of feeling misunderstood. However, I’ve gained a deeper understanding of autism since my daughter’s diagnosis, and that’s a start. As we navigate communication together, I remind myself that she is trying just as hard as I am. Together, we will work toward finding effective ways to connect—whether through words or other means.

For more insights on navigating challenges like these, you can check out this blog post. If you’re seeking authoritative information about the journey to parenthood, visit Make a Mom. Another excellent resource for understanding fertility treatment is March of Dimes.

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Summary:

The article explores the often-hidden struggles faced by parents of children with Autism Spectrum Disorder (ASD). It shares a personal narrative about the challenges of communication and behavioral issues that arise from frustration and sensory sensitivities. The author emphasizes the importance of empathy and understanding from outsiders while recognizing the complexities of managing autism-related behaviors. It concludes with a commitment to finding effective communication strategies alongside her daughter.

Keyphrase: autism struggles parents face

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