Autism Sucks? — Dare to Tell the Truth?

By Kami-Leigh Agard

Is it okay to throw shame on those parents and caregivers who share that on some days, autism sucks?

As a parent of a 15-year-old on the autism spectrum, I am constantly on the prowl, hungrily devouring everything I could find on autism spectrum disorder, whether it’s the latest research findings, “miracle” diets, vitamins, therapies—but my absolute favorites are parent blogs. Admittedly, it’s an addiction. So when I came across this BBC News article, “I have dark thoughts about my children’s autism,” like a deer caught in headlights, with apprehension, I read on.

One of the parents in the article, referred to as “Christine,” is a single mom to three children on the spectrum. She stated, “I get riled when people say well-meaning things like: ‘You must be a really strong person because you wouldn’t be given more than what you can deal with.’ This (autism) just doesn’t feel like a reward. I often feel there’s not really space in the autism world for a mother to say: ‘I really wish this wasn’t happening, I don’t feel blessed, I don’t feel strong, I don’t feel like it’s all happening for a reason.”

Hmmm. Should this mom, (who oddly enough works as a psychiatric nurse), be shamed because well, she is being brutally honest?

Then there are countless social media posts from parents who post the hell they endure on any given day, flowered with incredulous gratitude.

For example, one parent who referred to her son as “Lovable Danger Dan,” wrote: “Today was extremely challenging, but we are so grateful for our beautiful boy. Danger Dan literally drove me crazy with his tantrums when I told him he couldn’t take his suitcase of Legos to school, cussed his teachers out like a drunken sailor, kicked a boy in the head on the school bus, tore a chunk of my hair out, only sucked on ketchup packets all day, got me in a panic at Home Depot when the entire staff tried to coax him to come down from a-mile-high shelf he craftily climbed up, refuses to bathe after a whole week…but we are so blessed to have this amazing child.”

Pardon me for asking, but is she full of bull or canonized as a saint?

Makes one think. I adore my daughter, but YES—she is a handful. YES—all of our lives have drastically changed in the last 15 years. YES—I worry about her future. YES—sometimes I want to run for the hills when I don’t know what to do. YES—having a love life is impossible. Yet, NO—I wouldn’t exchange my princess for any so-called “normal” child.

However, I don’t demonize the parent in the BBC article for being honest. All this sugar-coated hypocrisy and facade that autism parents show to the outside world is deceiving. When my daughter, Soa, at age three did not talk, I was told, “You know, Einstein did not talk until he was age eight. Maybe she is some kind of savant.” Well, today, Soa is 15, does not talk, read or play outside with the neighborhood children. However, unlike the aforementioned parent, any anger and resentment I have about autism, I channel towards myself. It hurts that I can’t help my daughter more, but do I hate autism? No, because I love the entire package that is my Soa—her incredible agility, athleticism, beauty, cunningness, and let’s not talk about how her toothy smile and giggles melt our hearts. Yes, autism has definitely turned our world upside down, but I wouldn’t exchange my pooh for all the riches in the world.

Please share your thoughts by emailing: kami@rockawaybeachautismfamilies.org

The next Rockaway Beach Autism Families family support group meeting is Thursday, February 15, 7 p.m. at the Knights of Columbus (333 Beach 90th Street). For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.