A Raising Autism Blog
A week ago, a storm roiled over my house in the woods. After overly humid, sunny days, the clouds turned ashen, spreading like spilled water from a dirty mop bucket. Thunder started too—- first in the distance but then ricocheting off our windows. The storm raged for five days, soaking the already over- sogged lawn and garden.
You don’t recall such a storm, you say? The Nor’easter hasn’t happened, you note.
That’s because the storm is in my daughter’s head.
I’ve shared my “autistic storm” experience before. This happens when the autistic person’s emotions become so overwhelming that imbalance becomes inevitable. The rage tumbles from every pore, drenching our family in ire. Symbolically, during these times, my daughter bathes frequently, filling and refilling the over-sized bath tub so often the septic system barely manages the influx. Just as rage pours from her, our water system weeps from the surfeit.
My daughter recently turned 21, a time when many adult children transition from college to adulthood with jobs, apartments and responsibilities. Not my child. Her autism has brought self-hatred and paralysis rather than forward momentum.
I’m still puzzled by my daughter’s descent into inaction.
She graduated high school three years ago with more than a high school diploma: she already had earned a CMA, certified medical assistant, credential and EMT credential. She had participated in ROTC, taken fencing and played drums in a band. She had dreams. She believed in her future.
But already shift had begun. When Covid hit and schools shut down to protect students and teachers and their families, my daughter’s school immediately went online. Staring daily at a video screen, with little interaction, my daughter’s life shifted from social to virtual. This distance between a real world and one distanced through a camera lens changed her. She got quieter, more reclusive, more inward, more isolated. With this, my daughter’s ambition and achievement receded. First, she stopped fencing. Next, she quit her band. She attended school classes— both virtually and in person— but she was absent. Not physically absent. Rather, an absence of presence or personhood. This is different from personality, an outward, individual expression. She had become a ghost, lost in her own head.
I don’t know if the shift Covid brought to our social environment caused this change— I am not blaming Covid or the needed lockdowns— or if it were a coincidence of growth timing from child to young adult. No cause and effect chain can be adequately isolated with reliability and clarity. It could have been the change from tween to teen — the hormonal surge and increased self-doubt most girls experience with this transition. Or perhaps it was the social malaise typical of teenagers of many generations. She hadn’t succumbed to social media temptations, preferring reading books and drawing instead. In fact, at this time, she entered a phase of artistic intensity, drawing animals and painting them in intense blocked colors.
With no studying and very little academic effort, she graduated with a strong enough GPA to earn acceptances to highly-rated private colleges. The summer before she started college, we shopped for her dorm necessities. On move-in day, we outfitted her room and took pictures of her smiling while sitting on her raised bed.
This is the last functional moment I can recall for her. Almost two months later, I learned she had attended only a few classes. The rest of the time, she had stayed in bed, sleeping day and night. I had lost more than a semester of tuition. I had lost my daughter.
Since then, she has been in and out of intensive therapy programs and spent hours in individual therapy. She has gotten other medical certifications but never used them. She has demonstrated an incredible work ethic in various jobs, working so hard, she burns out. And through it all— the one consistency— rage, turned inward and outward, has infested her life. The rage, I imagine, is like the Biblical one from the Charlton Heston movie, a shadow creeping door by door to fell the first-born son. Except this dark cloud of death is indiscriminate in gender, choosing neuro divergence instead. The other struggling adult-cusp children I know are all autistic 1-4 or as some still say, on the spectrum.
Sharing this with you, I feel shame. I know I have not contributed to my daughter’s festering blockage. I have nudged, encouraged, reminded (also called nagging). I have tried every organizing and tracking system for autism and ADHD. I have become the guru of positive quips, noting “this too shall pass,” “just hang in for tomorrow and the sun will come,” and “you can do anything when you believe in yourself. Not surprisingly, none have worked. My cognitively structured mindset seems overly simplistic and trite compared to her wrenching pain.
Which brings us back to the storm. The winds continually stir her fears whipping rambling waves of fury over the trench of her stability. One lone mama cannot hold back a tidal wave with an outstretched hand exhibiting stop! The wave just curls over me crashing me into its depths as well.
The shame I experience has to do with comparison. Parents relentlessly compare their children, seeking their own affirmation from their child’s success. Who hasn’t heard— “You’ve done good, Mama”— to parents of kids in college, working toward degrees and jobs? Have I done bad? I don’t think so. I’ve likely spent more time seeking resources and support for my floundering child than less. I have relentlessly researched, sought medical and therapeutic advice and created space to position neuro divergence as the gift I know it can be.
The shame is also about paralysis. My child’s lack of forward momentum means reliving the same expectant vision over and over again, my own definition of insanity. A different result never comes.
The storm consumes our entire family. We each struggle with self-management and self-control while holding space for progress and possibility. It’s the dove from Noah’s ark who refuses to fly. It knows no olive branch yet rises from the waters.
We usually batten down and roll through these waves. We practice positive mantras, healthy eating, regular exercise, reading, writing. We will make it through again, we declare, and we do. But with each storm, we lose pieces of ourselves, chunks of hope fall Sisyphus-like off our shoulders.
I want to share so much more but my shame also traps me when I share this story. I am caught between a child’s privacy and my own, perhaps selfish, need for connection that comes through storytelling (my autocorrect wanted to write stormy telling). Perhaps, this isn’t my story to tell, though I certainly feel I can’t possibly be the only parent living in this storm. I meet others. I see it in their eyes. One dad told me recently as we rode an elevator, ”I did everything I could. But I wonder, what did I miss?”
Perhaps we missed our own ability to shape lives we created but are not our own. Our own determined march cannot be infused into our grown children like a blood transfusion. We cannot transmogrify our hope into the nerves and synapses of lost brains. We cannot step into their bodies and do this from within as if we were animated characters driving the arms and legs of walking dead.
We can do… not much at all.
My shame doesn’t go away. But then neither does my hope.
I would love to hear from you, even if, especially if, you disagree. Perhaps we can bring back the American tradition of debate. Please like and share this blog with others. Subscribe to receive it by email and go directly to the Walk the Moon website (www.walk-the-moon.com) to peruse the full collection of articles and updates. You can email me from the Walk the Moon website as well. My book You’re Always 39: Rising Above Late-Career Job Loss will be available at the end of this year. Email clynnegravis39@gmail.com for more information.