I Love My Child—I Hate His Autism

Langston Hughes professed, “Go home and write / a page tonight. / And let that page come out of you— / Then, it will be true.”

I am a 42-year-old mother of two boys, the youngest of whom is autistic. It’s been eight years since his diagnosis, and I have never—at this point likely will never—believe the cliché that autism has been a blessing or gift to our lives.

This may not sound like a particularly brave or inspiring proclamation. But the culture of autism parenting, not terribly different from the culture of motherhood in general, can be one of toxic positivity.

Social media, fellow parents—of special needs children or otherwise—and even medical professionals have led us to understand that while we may think negatively about autism, we are not encouraged to express it.

We are not supposed to talk about how hard it is watching your child be different in a world that fears differences—how venturing out into public can be as frightening for you as it is for your child. We’re not supposed to say how sad it is to admit he will realistically never catch up to his peers, live alone, or raise a family. Or how lonely we as autism parents sometimes are.

Instead, we are supposed to “embrace the journey.” We are supposed to “find the joy.” We are supposed to appreciate that “God only gives these children to those who can handle it.”

We are supposed to be grateful for what we have, for “it can always be worse.”

At least he’s happy. At least he’s healthy. He could be non-verbal. He could have cancer. He could have been born with a pig’s tail.

I recognize that when someone offers this perspective, the sentiment is well-meaning. Indeed, that’s not to say autism is without positive effects. When I started teaching high school English in 2004, I feared autism. My knowledge of it was limited to my textbook education, and when I experienced it first-hand as a young teacher, I found these students’ impenetrable ambiguities sometimes disruptive, and their parents overprotective and overbearing.

These children were frequently isolated and ostracized: while often so bright, their quirks and social inequities made them, at worst, the “weird kids” and, at best, patronized by a charitable laugh or smile from a benevolent peer.

The only prospect I dreaded more than having an autistic student in class was bearing an autistic child myself.

My experience as an autism mom has infiltrated my teaching. Practicing kindness and acceptance has trumped teaching content and skills. I speak about my autistic son regularly—his traits, his oddities, the good and bad days—to normalize autism for both students with autism or those who have been affected by it.

I connect with some parents of my autistic students on deeply personal and emotional levels. I make extra effort to know and understand these students, to get the other students to know and understand them. I have become the Liberty Island of autistic children: give me your awkward, your lonely, your excluded masses yearning to breathe free.

This is, inevitably, mirrored in my personal life. I am more patient, understanding, and tolerant of both my son and the sometimes cruel people around him. It has taken me growing time, but I now share him with the world in all his autistic glory.

In my classroom, I speak openly and candidly about him. When I see strangers in public observing or whispering about him, I politely address them—not to shame or criticize, but to explain, educate, and enlighten about his autistic behaviors in hopes that they will then explain, educate, and enlighten others.

I must admit, however, that my overt and raw discussions about my autistic son are also self- serving. While currently in third grade, where both students and staff love him, the scary worlds of middle and high school are rapidly approaching, and, despite my personal evolution towards autistic individuals, I’m sad to report that the demeanor of the 1990s bullies with whom I grew up has endured.

I know he will be picked on. He will be laughed at, and even worse, he will be excluded. Therefore, my stories and discourse about him are also thinly veiled pleas: “Please be nice to him. Please don’t pick on him. Please protect my son.”

As an autism mom, I have experienced this isolation myself, even amongst my loving and compassionate friends. While they ask about him and his progress, our parental anecdotes will never be equal or even similar. They laugh when I laugh, they cry when I cry, but it is done out of kindness, not understanding.

They would likely be sad to know I secretly endure their children’s accomplishments with resentment or jealousy. While they express bittersweet sentimentality over their children growing up, my own child is stuck in perpetual toddlerhood, and his growing older only brings new anxiety and fear.

So, I am a passive participant in our conversations about parenting, and he is often reduced to Mr. Rochester’s invalid wife: acknowledged and discussed among us but then safely stowed away.

The most genuine and authentic connections come from other autism moms, usually formed organically from special needs classes or ASD Parent Support Groups. Even then, however, this unfiltered and unadulterated communication about our autistic children is limited to the safety of our private conversations.

This is because the difficulties of autism—like so many other conditions in life—are not understood until you are living them. Only an autism parent will know why potty-training my son before he was three will forever be my life’s greatest accomplishment.

Only they will understand why my son still cannot handle the seemingly simple act of going to a movie theater. Only they will not judge me for excluding him from family vacations that require flying on a plane. Only they can truly share the joy of a successful haircut, teeth cleaning, or trip to a new store.

And I can admit to them—and now, to the world—that while I have accepted this road we are on, have, and will continue to fight for my son and believe in every ounce of his potential, I will never be grateful for this tumultuous journey.

I will forever torment myself by wondering what life for him and us might have looked like. As with all grief, I will still cry in anger or sadness at unexpected times about the loss of the life we’d thought we’d have, that we planned so carefully for. I will always wish I could take his autism away.

Before I am judged for this perspective, let me make it plentifully clear: I love my autistic son, purely and desperately. But, my experience as an autism mom has allowed me to fully realize and appreciate the paradox that two things can be true at once.

Mothers, fathers, and caregivers do not have to gaslight themselves into believing that loving our children means embracing and loving autism. The truth is I will forever love my child, and I will forever hate that he is autistic.

Beth Ruggiero Bell has been teaching high school English literature and composition for 20 years in her hometown in Upstate New York. She is a married mother of two boys, the youngest of whom was diagnosed with Autism Spectrum Disorder at age two. She is a strong advocate of speaking candidly and vulnerably about the realities and complexities of parenting special needs children.

All views expressed are the author’s own.

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