My son is autistic. He received an autism spectrum disorder (ASD) diagnosis when he was three years old, which opened the door for a plethora of covered therapies, a rigorous therapy schedule and—on my part—excessive anxiety.
The early years were incredibly difficult, and I do not look back on them fondly. There was too much unknown, too much stress and way too much silence. My son met many milestones shakily, and I tortured myself with whether or not they counted.
When many toddlers were asserting their independence, he was quite passive. Speech and fine motor delays made independence more challenging. He seemed content to have things done for him. During that time, aside from “I love you,” the words I wanted to hear the most were, “I can do it.”
It isn’t easy being the mom of a child with autism, and surely not everyone will understand my experience. But here are three things I’d like for people to understand:
1. My kid’s milestones probably look a lot different than other kids’
Apple TV's "Becoming You" examines the first five years of children’s lives from across the globe and how those experiences shape each child. Episode one focuses on a long-standing culture in Japan where families send their three-year-olds out in the world to perform a task. The three-year-old goes to get sushi for dinner, armed with money and a list. After picking up dinner, he stops at some machines to get a toy, squats on the floor and plays—in no rush to get home. He no longer has any fear. As the show narrates, he is now a different kid.
It triggered something in me, as it had been gnawing at me for some time: My son just turned 10 and I occasionally still cut up his food, brush the back of his teeth, and check if his sneakers are on securely. Am I stunting his independence?
Humans are creatures of habit. It’s natural to grow accustomed to having people do things for us. For my son, it often takes longer to acquire a new skill. Every parent wants their child to be independent, but the reality is that in the busyness of everyday life, parents often don’t have the time to nurture a particular skill if it takes some time to acquire. It’s a slippery slope of dependency—but the consequences of not nurturing and supporting independence are serious.
Nurturing independence is even more crucial for kids on the autism spectrum. The statistics are sobering, with 2% attending college, 15% being employed and 1 in 5 living independently since leaving high school.
With my son turning double digits, it was a wakeup call for both of us to start stepping outside our comfort zones. Suddenly, every small step toward independence mattered. As a younger child, he never wanted to be left alone—I needed to be within eyesight, or he would come looking for me. Today, he still prefers that I’m somewhat nearby, but he has progressed to within an earshot.
After some discussion and experimentation, I was able to do short bouts of yard work (with his face sporadically pressed against the window), leave him in the car as I sprinted into Starbucks to pick up my coffee and then he even rode his bike solo around the neighborhood, which gave me a high that lasted close to a week. That bike ride was a milestone on his journey to increased independence for a variety of reasons: following the rules of the road, navigating any chance encounters with strangers and neighbors and returning home within a certain period of time.
After these successes, he was ready for his “first errand”: walking to a mailbox about eight minutes away to drop off (ironically) my life insurance payment. Another reminder of one’s mortality, that I won’t be around for him in perpetuity. I timed this errand so my partner could surreptitiously be in the parking lot nearby to ensure he got there safely. My partner hit some unexpected traffic so never made it in time, but the errand was successful.
When I saw him appear from down the street (this time with my face pressed against the window), I got a feeling I wish I could bottle: that feeling that everything is as it should be, and it will be OK.
The next day, we were at one of our favorite restaurants and he announced he needed to go to the bathroom. As I got up from my chair to escort him, he said, “I can go by myself.” I was shocked and tried to play it cool as he had never done that before. Was it a coincidence that he decided to go on his own after running his first errand? I’ll never know for sure, but I think not.
I share this because achieving independence is something much of the general population takes for granted. I’ve learned that fostering independence takes planning, effort, patience and additional time. My family has made conscious adjustments in our daily lives to build confidence and decrease dependence.
With every success and step forward, it’s easier to imagine what he’ll be doing in the next couple of years. He adores trains, so we have spoken about him taking the train when he gets older. Today, neither of us are ready for that. I’ve realized it’s OK if he takes a bit more time to establish independence as long as he’s making strides to get there—and I’m encouraging it.
2. My experience as a mom is vastly different than yours
When my son was a toddler and I was still reeling from his ASD diagnosis, I tentatively asked one of his therapists that I had grown close with if it was obvious he was autistic. She looked me in the eyes and said without hesitation, “Jane, we all know when a child is different.”
Looking back, I cringe thinking about that moment in time because I desperately wanted him to fit in and be a part of the neurotypical majority. In my mind, life would be easier and more predictable. Today, as a mom squarely in midlife, I know how naïve that mindset was: nothing is guaranteed for any of us—with or without a diagnosis.
Sometimes, in an effort to avoid being uncomfortable, people resort to platitudes about raising kids and make empty predictions about my son’s future. A few that I’ve received over the years: “He’s got good language. My so-and-so’s son was autistic and never spoke. I’m sure he’ll be fine.” Or “Have you tried Therapist X? She did wonders for my neighbor’s child and now you can’t even tell he’s different.”
Some moms have even tried to one-up me and share their experience of when their kid broke a bone and then summed it up with something like “All kids are hard to raise. It takes a village.” Although these comments may be well-intended, they don’t have that effect. I’ve most appreciated when other moms have asked questions rather than make assumptions about my son and his future. I value humor, support and an effort to understand—similar to most moms.
When you’re uncertain of what to do or say, err on the side of being inclusive. Ask for a playdate. Encourage your child to get to know the kid that’s different. Take an extra minute to introduce yourself to the mom sitting alone at a school concert because the other moms already know each other from past playdates. This stuff matters, and I speak from experience.
My son’s early years were some of the loneliest: dealing with all the uncertainty that comes with autism, balancing a full-time career and my son’s therapy schedule, and figuring out my new identity as a mom was overwhelming. On difficult days, I would have welcomed these because one simple gesture can change the trajectory of the day. Trust me.
3. It should be easier to provide meaningful experiences for a child with autism to engage with neurotypical children—outside the school setting
Like most mothers, I will fight to create opportunities for my son to thrive. This can be challenging when it comes to group activities if one’s social skills are not at the same level as peers or if there’s some behavioral unpredictability. As a result, group activities or team sports have not been an active part of my son’s life until late last year (ironically) during the pandemic. Neurotypical humans are a majority in this world—and I’ve always felt it important for my son to understand and get along with them, too.
But how can one develop this important skill if opportunities are limited and kids remain siloed? In my search for meaningful experiences for my son outside the school setting, I’ve primarily come across group activities specifically for kids with disabilities and ones that will consider a child with a disability if an aide or therapist is present. Neither are a good fit for him, as they do not provide the organic real-life experience.
We need more organizations that specialize in kid activities that embrace inclusivity. We need those leading kid activities to be creative and flexible in accommodating a range of different needs alongside neurotypical kids. Whenever this happens, it creates a pathway for understanding and acceptance. That is real life. Without all types of kids contributing to a shared experience, silos will remain.
Related: My child isn't rude—they have autism
As I mentioned earlier, my son joined a choir and group swimming lessons late last year and it has given him a sense of belonging and confidence that every child should experience. At first, I was hesitant to approach the music and swim schools. Even after a decade of raising my son, I still get emotional advocating for him and explaining his specific needs and ultimately hope others listening will understand and be open to making any necessary accommodations.
As a parent of a child with a disability, you simply want to hear, “OK, let’s try it and we’ll go from there.” In the disability community, it doesn’t happen enough. When I told a colleague that my son enrolled in choir, she called him a “trailblazer.” She was referring to the fact that he was the only obviously autistic kid in the group, and his participation would (hopefully) pave the way for others to join.
We need to get to a point in our society where it’s commonplace for all kids—with or without a disability—to participate in extracurricular activities together. My preference is he be a kid above all else—trailblazer status optional.