The Thing Without a Name
By Kami-Leigh Agard
Folks, I’ve been going through a thing. I call it the “thing without a name” because for years, I didn’t know what to make of it. What’s confounding is not just the what, but the why. I’m still living la vida loca—parenting my daughter on the autism spectrum, co-parenting with her dad, balancing a hectic schedule of work, autism advocacy, plus, quite proactive in other passions (faith and politics included), and well, just striving to be a positive force in this chaotic and sometimes frightening world. Don’t get me wrong, though fraught with challenges, life is beautiful. God blessed us with life and to live it abundantly. It’s just that I’ve been feeling like I’m running a marathon and stuck on mile one. No movement forward, just running in place, and anxious about the 25 miles ahead. The reason I’m sharing (though, I could hear my dad vehemently stating that this should stay behind closed doors), is because I view this column as a platform to help others, maybe give you a laugh or two, and hopefully, if just one reader gets a nugget of information or inspiration out of it, then something special has been shared.
So, back to the thing without a name. My granny pigeonholes it as discontentment. “Discontentment is worse than witchcraft,” she oftentimes says. However, what about depression, like a stiff drink, chased with anxiety? When it’s increasingly tough to get out of bed, take a shower and face the world; coupled with negative self-talk about not measuring up as a mother, autism advocate, worker, a failed marriage—how again and again and again—I play my violin in a symphony where I’m the only one on stage facing an empty concert hall. Setbacks with my daughter put me in an emotional tailspin with statements like, “If only I had…” One day, she unlocked the front door and bolted across the street. I had a meltdown, yelling at her dad, who God bless him, possesses the patience of Job. Admittedly, I’m an everything or nothing person, always seeking this ideal perfection—which folks, spoiler alert—never seems within reach!
After months of this depressive state escalating to the point that the doorbell ringing would have me in a state of panic, I started consulting with Dr. Google; searching for the why. And, after reading countless blogs from autism moms and dads sharing these very same feelings, I came to the conclusion that like these parents, I needed help.
According to a 2022 University of California San Francisco (UCSF) study: About 50% of all mothers of children with autism spectrum disorder (ASD) had elevated levels of depressive symptoms, while rates were much lower for mothers with neurotypical children. Self-blame and guilt among parents of ASD children are common and predict worsening depression and lower life satisfaction over time. Families with autism tend to experience more marital conflict, lower relationship satisfaction, and many other challenges.
However, folks, there is a rainbow to all this. Although the study acknowledged that families with an autistic child experience high levels of depression, the authors were cautious to note that many mothers also reported high levels of emotional closeness and positive interactions with their children. These are important experiences that supportive programs like Rockaway Beach Autism Families can build upon.
Following the study, the researchers offered mindfulness classes to all parents to help manage parenting stress. The parents were grateful to share common challenges and learn inner strategies to cope. It is important to experience and notice positive emotions and joy, despite having a more challenging life situation.
Given the effects of chronic stress on health and mood, caregivers need extraordinary emotional support in addition to services for their special-needs child.
Folks, it’s as vital to provide support for parents’ mental health as it is for children’s. The study’s finding that maternal depression does not lead to worsened autistic behaviors is especially important for mothers to help alleviate guilt about their children’s autism diagnosis and behavioral issues. The study’s authors stated: “We hope these findings will reassure mothers that it’s both common to struggle with some depression in this high-stress situation of chronic caregiving, and that their depression likely isn’t making their child’s behavioral issues worse.”
As the saying goes, “Health is wealth.” Well, the same goes for mental health, and through RBAF, I hope to provide much-needed support for families.
Feel free to share your thoughts by emailing: kami@rockawaybeachautismfamilies.org
