Parenting a Child With Autism: 4 Realities I Wish I Knew Sooner

Source: Shana Johnson

After 10 years of being a parent of an autistic child, there are many things that would have helped if I had just known it all on “Day 1.” If you’re trying to learn as you go, I hope this information will save you time, frustration, and energy.

You expect your doctor and other health care providers would inform you of critical information that helps you survive and navigate the challenges on a day-to-day basis. But in my case, no one offered such insight. Whether you’ve just received the diagnosis for your child or have been managing for years, here is what I wish I knew earlier.

1. Confusion zone

I struggled with the challenges of autism for years before I knew I was an autism parent. And these typical challenges flew under my doctor’s radar. My son did not obviously meet autism diagnostic criteria when he was young, yet we struggled daily. For example, as a toddler, my son had out-of-control behavior in public spaces, including my doctor’s office. I mean, running around in circles, climbing on chairs…there was no sitting and waiting, ever. But, he was calm and in control at home. The staff at the pediatrician’s office was empathetic at how hard he was to manage during visits, but not one of them ever connected the reason he acted this way. I struggled with this confusion for years. Why did he behave oppositely in different environments?

I now understand my son showed this behavior because of sensory differences. Whether it be a doctor’s office, restaurant, or store, the sights, sounds, and smells were overstimulating for his young, differently wired nervous system. His nervous system couldn’t handle all the stimulation—much of it minor to people without such sensory differences. I learned that he required a different approach; a graded exposure to new environments with monitoring for signs of sensory overwhelm.

LESSON: Understand autistic sensory differences, the signs of a sensory meltdown, and how to properly manage it.

2. Lack of understanding by “experts”

My son had a talented general pediatrician, but I found that general pediatricians often don’t fully understand how autistic kids function. In my experience, they understood the diagnostic criteria, but didn’t grasp the ways in which his nervous system affected his medical issues. The lack of understanding led to incorrect treatment. For example, my son struggled to fit into the five-day school week in elementary school due to his sensory differences. As I tried to be compliant, my son began developing reflux. Over months, the symptoms worsened to the point where he was vomiting multiple times per week and we were referred to a gastrointestinal (GI) doctor.

He underwent an invasive procedure that was traumatic for him, a GI scope. The result: completely normal. He was refluxing and vomiting over the stress of trying to do five days of school per week, when he could only tolerate four. When we went back to four days per week, his symptoms resolved. Two years later, as the five day school week controversy reared its head again, he developed hours of heart palpitations at night and insomnia. A cardiology evaluation was ordered. Once again, the results were normal and his symptoms resolved when he could resume a schedule that worked for him.

I finally established with an autism pediatrician who understood immediately that my son’s physical symptoms were from stress as a result of struggling in a neurotypical environment.

LESSON: Don’t punish yourself and your child forcing them to fit into a neurotypical environment.

3. Judgment and blame

The majority of people you encounter will have no clue about the issues you’re dealing with. They defer to applying judgment and blame when things don’t look typical. I was in shock for years at how much I was gaslighted by those who don’t understand autism. Those individuals mistakenly believed they knew better, and blamed me for my parenting differences. For example, my son not tolerating five days of school per week was a reflection of my lax parenting and not his sensory differences. At the same time, I have been amazed by the amount of support and understanding from those who do understand autism. I wish I had understood sooner to not take other people’s ignorance personally.

LESSON: Ignore the judgment and blame from unenlightened onlookers; focus on the needs of your child.

4. Oxygen of understanding

Day-to-day life would be incredibly different, based on the level of autism knowledge of the people around us, both in the school and the community. The absolute best public schools that served us were those where the principal had experience teaching autistic children.

The contrast of one environment versus another was striking. My son struggled in an unsupported, misunderstood, environment while he absolutely thrived with minor accommodations in an educated environment. Autism functions differently, not incorrectly. And many times, they have talents that far exceed their neurotypical peers.

Autism Essential Reads

A Brief History of the Science of Autism Spectrum Disorder

We Already Know What Causes Autism

For example, my son’s first school did not understand he was stimming—repetitive behaviors done as a means of coping with a difficult situation. The staff considered his noises to be misbehavior. In reality, he was experiencing a sensory issue that needed accommodation, as simple as a move to a quieter location.

Through all the struggle, the years of adjusting, there are occasional people you meet who understand autism and support you. They are sparkling gems that shine on me, giving me hope and affirming that I am not a bad parent, a lax parent. That my son is struggling to live a neurotypical life that doesn’t fit.

LESSON: Veer away from the people who are suffocating you with misunderstanding. Seek the people who “get it”. And breathe in the oxygen of understanding.

Caring for an autistic child can be a challenge. For me, the biggest obstacle was dealing with people who didn’t understand this condition and how it impacts a person’s daily life. I realize now, after ten years, I live in a different world than parents of neurotypical kids. We have unique challenges to navigate but I also have the sweetest, most kind-hearted, creative human I have ever known.