The Side Of Autism That Parents Don't Let You See

by Madison Hayes
Originally Published: 
Little girl with autism sitting on a sidewalk next to a parked black car and crying hysterically.
Richard Bailey/Getty

My daughter was diagnosed with Autism Spectrum Disorder (ASD) two weeks after her third birthday. And besides a verbal delay, lack of eye contact, and sometimes appearing underactive, she wasn’t displaying many of the typical behaviors associated with autism at the time of her diagnosis.

We can call those days the honeymoon period, and I’ll tell you, they didn’t last long.

I can’t say for sure whether it was finally knowing what we were looking for or the fact that our daughter was getting older that made us initially take note of her behavioral changes. Whatever it was, shortly after her diagnosis, we began to see more and more of the “stereotypical” attributes of autism from her.

She was becoming increasingly agitated with her communication being so limited. Her sensory issues were disrupting her way of life, and her eating habits changed drastically. And as a way of venting her frustration, she began to get physical with me, her siblings, and herself.

I’m no stranger to bloody noses and lips, scratches on my neck, chest, arms, bite marks, and head-butts at this point. When these episodes were at their worst, one of my doctors thought I faced domestic abuse at home. She asked me three times in three different ways about the marks on my arms and neck at an appointment, and I had to reassure her that they were from my three-year-old daughter with autism, not my husband.

When I left that appointment, I cried because I hated that my daughter’s aggravation could reach that point. I didn’t hate it as in “poor me, I can’t believe she does this.” I hated that she was trying everything within her power to communicate, and I — her mother — didn’t know what she wanted. And if I’m honest, sometimes these feelings of despair still take hold of me.

When we’re out in public, and I can see her irritation starting to build, it’s not her behavior that gets me — it’s the outsiders’ looks that could kill me. Without uttering a word, their facial expressions scream, “If my child ever did that to me,” amongst many other things.

I want to tell these people how grateful they should be that their children can rely on their words to communicate. I want them to know that the reactions they see from my daughter stem from a desperate desire to share her feelings effortlessly. I wish they knew that “using her words” is a privilege she doesn’t have right now, and her behavior is how she communicates.

I’m not saying that self-harm and harming others are positive coping strategies for an autistic child or that we should look the other way from these actions. I’m saying that behavior such as this isn’t seen just in unruly children, and special needs parents can’t treat these reactions in the same way as a simple temper tantrum. The two are not the same.

When we see behavior like this, we have to look at it even closer — clear down to the root of the problem. We have to find trends and make mental and physical notes about what triggered such adverse reactions. And make no mistake, every bit of it is challenging.

There are so many beautiful aspects of autism, but these challenges aren’t one of them. Maybe I don’t fit in with most special needs mothers, but I can’t say that I believe autism is a superpower. I think that concept focuses on quirky interests and does little to represent the many hurdles autistic people climb and how it affects them.

There are only so many times a child with autism can try to get their point across before the aggravation takes hold. Sadly for my daughter, that frustration evolves daily. I can see it intensifying when she starts to cry and lightly hits herself on the head, and that’s my cue to intercept.

I try to communicate through pictures, sign language, or presenting different items that comfort her or fit her needs. Sometimes, I run back and forth to the kitchen five to ten times for meals, figuring out what she wants for breakfast, and sometimes it is the most desperate feeling for both of us. (If you didn’t know, “You get what you get, and you don’t throw a fit” doesn’t work with ASD kiddos.)

Of course, I’ve worked with her pediatricians and therapists on these matters. We’ve found that my daughter is a sensory-seeker and deep pressure input helps her feel more regulated in any situation. If she attempts to scratch, pinch, or use her hands in a way that could cause harm, we encourage alternative reactions that can mimic that same sensory-like satisfaction.

For example, we encourage clapping, hand squeezing, and tapping her fingers if she tries to hit or pinch. If she’s hitting her head, we rub or gently apply pressure to the sides of her head, and sometimes I will put a compression vest on her. In addition, she’s also been fitted for a safety helmet that we can place on her during self-harming episodes to help ensure that she is staying as safe as possible.

I’ve read books, listened to the voices of autistic adults, and I’ve invested countless hours researching Autism Spectrum Disorder. Yet, it feels like I’m not doing enough when my child still struggles with self-harming and takes her anger out on others in the middle of meltdowns. And although I know that these are typical behaviors of a nonverbal child with autism, it’s got to be one of the most gut-wrenching parts of my motherhood journey. And it tears me to pieces knowing that it’s probably the most trying aspect of my daughter’s childhood.

I don’t have all of the answers right now. Unfortunately, there are no “quick fixes” when it comes to frustration built upon years of nobody fully understanding you. But I know more about autism today than I did a year ago when my daughter received her diagnosis, and that’s a start.

So while I’m trying my best to communicate with my daughter, I’m also keeping in mind that she is trying too. Together, we will find our way towards consistent communication — with or without words.

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