The Hidden Struggles of Autism That Parents Often Conceal

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Updated: November 12, 2021
Originally Published: November 11, 2021

My daughter received her diagnosis of Autism Spectrum Disorder (ASD) just two weeks after her third birthday. At that time, aside from a speech delay and limited eye contact, she didn’t show many of the common traits associated with autism. We can refer to that period as the “honeymoon phase,” and let me tell you, it didn’t last long.

I can’t pinpoint whether it was the realization of what to look for or simply her aging that led us to notice her behavioral changes. Regardless, after her diagnosis, we began to see more of the “typical” autism traits emerge.

Her frustration grew as her communication remained limited. Sensory sensitivities disrupted her daily life, and her eating habits took a sharp turn. To express her frustration, she sometimes resorted to being physical with me, her siblings, and herself.

At this point, I’m all too familiar with bloody noses, scratched skin, bite marks, and head-butts. During one particularly difficult episode, a doctor even questioned whether I was experiencing domestic abuse at home. She asked me three different ways about the marks on my arms and neck, and I had to clarify that these were from my three-year-old daughter, not my husband.

Leaving that appointment, I was overwhelmed with sadness. It hurt that my daughter’s frustration could escalate to that level. It wasn’t a matter of feeling sorry for myself; rather, I felt deep sorrow that she was desperately trying to communicate and I, as her mother, was unable to understand her needs. To be honest, those feelings still creep in from time to time.

When we are in public, and I notice her frustration beginning to bubble over, it’s not her actions that distress me, but rather the judgmental stares from onlookers. Without saying a word, their expressions seem to convey, “If my child ever did that…”

I wish I could explain to them how fortunate they are that their children can articulate their feelings. I want them to recognize that my daughter’s reactions are rooted in a profound desire to express herself, a desire complicated by her inability to “use her words.”

I’m not arguing that self-harm or aggression are acceptable coping mechanisms for an autistic child; rather, I want to emphasize that such behaviors cannot simply be dismissed as typical misbehavior. They must be understood in a broader context.

When we observe these behaviors, we need to delve deeper into the underlying issues. Identifying patterns and triggers is crucial, and I won’t sugarcoat it—this process is incredibly challenging.

There are many wonderful aspects of autism, but these struggles are not among them. I may not align with the perspective of some special needs parents who view autism as a superpower. I believe this notion tends to highlight quirky traits while overlooking the significant challenges autistic individuals face.

A child with autism can only attempt to communicate their needs so many times before frustration sets in. I see this escalating when my daughter starts to cry and lightly hits her head, which signals to me that I need to intervene.

I try using visuals, sign language, or introducing comforting items to help her. Sometimes, I find myself running back and forth to the kitchen multiple times to figure out what she wants to eat, which can feel overwhelming for both of us. (For the record, the phrase “You get what you get, and you don’t throw a fit” does not apply to children with ASD.)

Of course, I have collaborated with her pediatricians and therapists on these challenges. We discovered that my daughter is a sensory seeker, and deep pressure input helps her feel more regulated. When she exhibits harmful behaviors, we encourage alternative outlets that provide similar sensory satisfaction.

For example, we promote clapping, hand squeezing, and finger tapping as substitutes for hitting or pinching. If she hits her head, I apply gentle pressure to the sides of her head or use a compression vest. Additionally, she wears a safety helmet during self-harming incidents to keep her safe.

I’ve read extensively, listened to the insights of autistic adults, and dedicated countless hours to understanding Autism Spectrum Disorder. Yet, I still feel inadequate when my child struggles with self-harm and expresses her anger during meltdowns. While I know these behaviors are typical for a nonverbal autistic child, it remains one of the most heart-wrenching aspects of my motherhood journey.

I don’t have all the answers, and sadly, there are no quick fixes for a lifetime of unexpressed feelings. However, I do know more about autism now than I did a year ago when my daughter was diagnosed, and that’s a positive step.

While I strive to communicate with my daughter, I also remember that she is trying just as hard. Together, we will navigate our path toward effective communication—whether or not it includes words.

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Summary: The struggles of parenting a child with autism often remain hidden, overshadowed by the desire to communicate and connect. The author reflects on the challenges of understanding and managing behaviors that stem from frustration and sensory needs. Through collaboration with professionals and a commitment to finding effective communication methods, both mother and daughter navigate the complexities of autism together.