Lately, I’ve been riding the adrenalin of reading everything Brene Brown has written. I’ve just finished my 4th book written by her, seen both her famous TedTalk as well as her Netflix special on vulnerability I’m particularly struck by her metaphor of the arena and the bleachers, wherein stepping into the arena is an act of courage and vulnerability, knowing that there are armchair critics in the bleachers who will be offering their unsolicited commentary.
As the father of an autistic son, my identity has become inextricably linked to his identity. As a result, I am too familiar with those in the bleachers who are quick to share with me their opinions or theories on autism. It is both exhausting and marginalizing for me to listen to, because rarely is it ever fact-based. My son is so much more than the label society has taped onto his forehead. He is perfect the way he is - the new definition of neuronormal, but that doesn’t stop a Greek chorus in the bleachers telling me otherwise.
Inevitably, friends, family, and co-workers will share their unsolicited opinions on the autism. Though delivered under an umbrella of good intentions, many of the comments are hurtful, particularly when the facts are little more than unsubstantiated theories, typically learned through an internet article that popped into their social media feed. The diagnosis of autism drives a lot of conspiracy theories since science hasn’t yet been able to define any genetic origins or proven therapies. Many of the theories are offered with an understanding that we must find a “cure” for autism. In other words, a cure for this “affliction” which essentially tells me that there is something “wrong” with my son that needs to be fixed through any a hodgepodge of approaches: through pharmaceuticals, through special diets, through behavioral therapies, and other remedies to get him on the path to “normal”. I hear these through the comments of those in the bleachers.
“Did you get him vaccinated? I heard there’s a link between vaccinations and autism” one co-worker said to me out of the blue.
“There’s no scientific proof of a connection of an autism diagnosis and vaccination.
“Well, I heard it from one Mom that had her son vaccinated, and he was never the same after. She swears the day after she saw a change in him. She told me this at the bus stop. Our daughters are the same age and get on the same bus to school.”
“Have you thought about changing his diet?” offers someone else in the bleachers.
“No, not really”.
“I saw an internet article that says that children on the spectrum benefits from a gluten-free and casein-free diet”. Their brains can’t process the peptides or something, which is why they show the symptoms of autism. You should try to just to see…it couldn’t hurt, right?”
many children on the spectrum, he was extremely fussy about food and she was worried the doctor would question why he was so underweight.
“When did you get him diagnosed?” I hear early diagnosis is the key, along with aggressive therapy.”
This one in particular really hurts - a true punch in the nuts. Our health system is a complex and difficult maze to navigate, hardly designed to make it easy for parents to diagnose who have concerns about their child’s development. At the heart of this question is an implicit reproach - “why didn’t you act sooner?” “Why didn’t you act faster?” My son is very high-functioning on the spectrum, so the indicators were subtle. I even confronted my PCP at one of my son’s physicals, who assured me that my son was not autistic. He just had some sensory processing issues.
“Have you created a schedule? I hear autistic kids love consistency”
Again, this one hurts, as if I don’t already know this. Yes, autistic children love predictability. I’ve learned that less inconsistency leads to less meltdowns. Nonetheless, a comment like this from the bleachers implies “shouldn't you be doing more with his schedule?”
“Remove all video games, tablets, and screen time. I hear it rewires their brain or something, The neurons don’t synapse correctly….”it stunts their social skills”
My son is an only child, so yes, he loves video games, he loves watching YouTube videos, he loves researching his favorite topics on his tablet. Right now, he loves checking out ...To remove these sources of joy from him would be cruel.
“Will he ever be able to go to a normal school?”
My ex sister-in-law said this to me once at a family dinner. I couldn’t decide what was more offensive in the moment - her alarmist tone or the way she inflected her voice on the word normal. Well yes, my son has gone to a Catholic school his whole life, and is at the top of his class not only for academics, but also for conduct. So yeah, I guess that fits your definition of normal.
A quick search of the internet will show you that there are some underground, downright medieval approaches to treating autism. I recently learned of a practice called “bleaching”, which not only sounds cruel, but reminiscent of colonial blood-letting. Misinformed parents think they can cure their autistic children by forcing them to ingest chlorine dioxide, commonly found in household bleach. Truly macabre.
Lastly, in my experience, some well-meaning - though very mis-directed - friends have texted me with “inspiring” viral stories of autistic children who have overcome the odds. One texted me a YouTube video of an autistic boy attending his Senior prom with a girl from his class. The video showcased how this “courageous” girl had taken her autistic classmate and was praised for her charity in bringing him as her date. Gosh, in front of all her classmates? Man, that's real courage.
On another occasion, no less than 3 friends from across the country texted me the
video from America’s Got Talent, where an autistic and blind young man sang and played the piano to the delight of the three judges. “See?” the texts imply…”there’s hope for his future after all!” My son and this AGT contestant could not be more different, but our desire for finding commonality supersedes our understanding that this logic couldn’t be more flawed.
So just how can you support the Dad of an autistic child? Thankfully, the answer is so simple - just beautiful in how easy it is to do. You can listen. The word listen has the same letters as the word silent. Listening and remaining silent are the two best gifts you could ever give me, When you listen, you’ll notice how my eyes light up as I talk about my son, my jaw will relax, my eyebrows lift with when I extol his unique gifts, when I tell you how truly blessed I am to have him, when I regale you with stories of how he waits for me at the top of the basement stairs when I return home from work, how he bought me a #1 Dad coffee mug at his school’s Christmas bazaar, and how he maps out our Sundays during football season, sharing with me the day’s viewing agenda first thing in the morning, This…………..this is how you can support a Dad with an autistic child. You can listen - listen with genuine curiosity and resist the urge to share the latest story you saw in your internet feed. I’ll thank you and memorialize my gratitude by remembering your kindness for the rest of my life……..because you listened.
