It really doesn’t have to be this way, though. After my son was diagnosed as autistic when he was 3, we embarked through a long, painful learning process to get to a state of acceptance and (relative) peace. No one should have to repeat our steep learning curve, so I’m sharing what made all the difference for us: Discovering, and listening to the insights of autistic adults.
Parents need to hear from people who have lives similar to what our children will experience. These adults can warn us about avoidable mistakes, and they can counter our assumptions about what it means to live a good life — even when that life is complicated.
At first, I didn’t understand that my small son could be both autistic and happy, and I fell for pseudoscience and autism “cures.” As it became clear that not only had we been scammed, but that my son would probably always need full-time support, I sank into a deep despair. How could we ever be happy when even the chirpiest resources I was receiving from non-autistic support professionals advised me to get used to caring for a broken kid?
I now know that the despair was caused more by my exposure to negative stereotypes about disability, and less by my child’s reality. Still, ferreting out useful autism parenting resources took time. I desperately wanted guidance, but I also resented autistic people who wrote about mistakes their parents made. It seemed unfair that people who communicated so well on the Internet were criticizing how I parented my minimally speaking son.
Eventually, though, I realized that these adults were sincerely trying to make a difference for kids with disabilities. Most of them had been badly misunderstood and mistreated as children, in part because their own parents did not always understand what they needed to thrive. I also learned that many of these writers had been nonspeaking when they were children, and others remain nonspeaking as adults. Once I realized that they knew what it was like to be my son in ways I never could — even though as his mother I know him best — I started listening intently, with both respect and ever-increasing gratitude.
Since then I’ve learned so much, including how to redefine what happiness looks like. Of course I love seeing all three of my kids explode with delight, like any parent. But I used to get hung up on my son’s passion for fidgeting with green straws, or the fact that his interests were in areas often considered better suited for younger kids. But listening to autistic adults taught me to better recognize how autistic happiness manifests, and now I let my son like what he likes, as long as it’s relatively harmless. So if my 18-year-old dude is singing a Winnie-the-Pooh song and loving it, I honor his joy, and maybe even sing along if he lets me. (He sometimes tells me to stop because he has great pitch and I really do not.)
There was a time when I never questioned parent stories that portrayed having an autistic child as pure unadulterated hell for everyone involved. That was before I learned from autistic writers how dehumanizing and unfair such stories feel to the kids being written about. I am not denying how difficult our kids’ and families’ lives can be; my son still requires 24/7 support, and we live in a society that doesn’t fund sufficient education or services for us. But I worry that non-autistic parent portrayals of autistic children’s quality of life don’t give the full picture.
It helps to be aware that autistic people have shared traits regardless of other abilities or disabilities. Even though my son has an intellectual disability, he has the same need for routine and order as many college degree-holding spectrum-mates. My dude may use a visual schedule with Velcro-backed icons instead of a bullet journal or flow chart, but all of those tools help reduce autistic anxiety about unpredictability. I also no longer blame my son or his autism for his need to have stress outlets, such as an opportunity to vocalize rhythmically. Instead of trying to make him stop doing those things, I look to autistic advice on how to make things easier for him during crises.
Probably one of the biggest mental hurdles for me was the concept of neurodiversity, meaning that people like my son whose brains work differently not only matter, but have value and rights like anyone else. Yes, it’s embarrassing that I needed outside guidance to view my son as a worthy human being. But it’s also distressing to think how many parents remain convinced that their autistic children are less-than, lack empathy or are incapable of thought or understanding.
I value my son and his feelings, and I am mindful of how I talk about him, because that affects how other people treat him and also whether he trusts me. No matter how hard things are, I no longer publicly share intimate details about his life that I wouldn’t like someone else sharing about me. Instead, I work through touchy matters by talking to confidantes privately, or soliciting advice in secure nonpublic online groups.
How I speak to my son matters, as well. Even when he was too young to understand words, he knew when I was speaking with love and kindness. If he’s being difficult, I let him know that, but calmly and thoughtfully, because I now am aware that a sharp voice — let alone being yelled at — can trigger a meltdown in an autistic child who is easily overwhelmed by emotional and sensory input.
The biggest factor in shifting from a resentful to a contented life has been learning to focus on what we can do, and letting go of what we can’t. Our house is not the serene, carefully curated space I’d always envisioned. It is stocked with communication materials and devices, sturdy scarred couches, hammocks and fidget objects. My son is most at ease in his home space, so we usually have people over instead of visiting them. My husband and I rarely attend events together because child-care for high-support kids is expensive and scarce, but we are fine with alternating. Last year, we divided up the family for the holidays because of competing needs (one of my kids makes noises that another truly can’t tolerate). Though I would prefer not to split up the team, it was for the greater family good, and I have learned to be okay with that.
Some people might see our autism-influenced adjustments as sacrifices. I see them as our reality, and how we all pull together to make our unique brand of happiness work. And for that, I am indebted to the autistic adults who helped me see that our lives could be so full.