In Texas, it is not uncommon to hear the phrase “bless her heart” and to feel a pang of sympathy in response. While it may be well-intentioned, the saying is rarely used outside the context of pity or shame.
For example, a sweet elderly woman will say, “that’s such a homely baby, bless her heart” or a teacher will remark of a student, “he’s so slow, bless his heart.” It’s a phrase that kills with feigned kindness.
In the autism world, parents are often confronted with similar well-meaning axioms. They run the gamut from “God gives special kids to special people” or “God only gives you as much as you can handle” or (my personal favorite) “everything happens for a reason.” Not to look a gift horse in the mouth, but NONE of these makes me feel better.
Listen, I get that it can be very difficult for those with unaffected or neurotypical children, or no children at all, to figure out what to say when my daughter begins violently scratching me and smacking herself at a playground. I know that I bring a lot of discomfort and baggage with me wherever I go, and it’s hard to know just how to properly communicate sympathy or concern. The instinct is to try to make me feel better about my circumstances, and I both understand and appreciate the gesture. I sound sour, and truthfully I am, but only because people don’t seem to grasp the power of their words.
Because, in all honesty, these expressions only serve to make me angry and defensive. Admittedly, I live in an almost constant state of agitation and anxiety, but these sayings just set me off. And here’s why . . .
To me, autism is not a blessing; it’s a curse. My daughter isn’t special in that sense; she’s wounded. And I’m not simply facing a challenge; I’m fighting with every ounce of my being every day against numerous powerful forces — both internal and external — just trying to promote her healing. I feel like these sayings are telling me that I deserved this fate. I’ve spent countless hours trying to figure out what kind of karmic trick I’ve played on my child, and I’ve managed to come up with all types of scenarios in which we are going through this “for a reason.” All of this only reinforces the guilt and self-hatred I already endure on a daily basis. Even after combing through my past indiscretions and bouts of unacceptable behavior, I can’t imagine why anyone — spiritual deity or otherwise — would decide it best to take these actions out on my innocent child. What exactly would be the reason for her suffering, her frustration, her inability to enjoy a “normal” childhood? Beyond that, someone please explain to me why my entire family deserves to experience poverty or the inability to enjoy a friend’s birthday party or a movie in a theater or dinner out.
I also loathe these statements because they let the other culpable parties completely off the hook by making “autism” sound like a cosmic occurrence, instead of the group of preventable disorders it actually is. Autism is not fateful, it is created by a corrupt system that first harms our children, then ignores them after the damage has been done. God didn’t choose me or my child. The CDC chose to encourage her untested vaccines, the FDA approved them, her doctor didn’t communicate the potential side effects or pay attention to possible red flags, Monsanto knowingly sprayed her food with various toxins, and the government set up a wide net of corporate protection and public misinformation. At the end of the day, I chose to trust them, but we are raised to smile and nod, believe your doctor has your best interests at heart, and don’t ever doubt your government because they are there to protect you. And when those entities fail you and your children, they throw up their hands and talk about how “rare” (or even non-existent) these reactions are, and how they can’t be held accountable for people’s personal choices.
Additionally, these children — the ones with food allergies, neurodevelopmental disorders, leaky guts, ADHD/ADD, mitochondrial dysfunction, diabetes, etc. — are no longer “special.” That would imply that these are uncommon maladies, that they are unique. But, look around you . . . These children are everywhere, in every classroom, at every playdate. In a world where everyone’s special, no one is.
I’m a proud Texan and a married mother of three. My middle child, now three-years-old, was diagnosed with autism at twenty-seven months, more than a year after her initial regression. I have no shame in admitting that her recovery, in one way or another, has consumed my life. I have discovered a level of strength and determination I never knew existed within me, and this journey has taught me so many things about her as well. Through this journey, I’ve met so many committed parents who also believe that autism is preventable and treatable, and I’ve made it my personal mission to support families and educate as many people as I can about the facts.