Thankful: A few things I’ve learned since my son was diagnosed with autism
It’s almost Thanksgiving, and as I look back on a rocky, exhausting, sometimes trying, rollercoaster of a year, I’m so filled with gratitude.
Like most women, I have a few jobs. I’m the director of client success for Ovia Health, so I spend my days making sure families have the support and resources they need to grow and thrive.
I’m also a mom of three amazing children. My first two hit pretty much every milestone by the book. But my youngest is on another journey. He learns and processes information differently. Just as we were working to find answers, the pandemic hit, the world shut down, and appointments were delayed. It was only this year, at the age of four, that we finally got his diagnosis. My son has autism.
In many ways, the diagnosis was a relief—we had a name and an explanation for what we’d been going through. But it was also the beginning of a new, complex, and incredibly difficult phase.
Through the diagnosis and into the maze
You’d think, since I’m an expert in healthcare benefits, that I’d know right away what to do with this new diagnosis.
The truth is, even those of us in the healthcare system can get lost in the maze. At first, you don’t know what kinds of care are available or what your child needs, and from there, you’re tackling mountains of paperwork, from completion of milestone forms for speech, occupational, and behavioral therapy to diagnostic forms, observations, and assessments, on top of individual education plans (IEPs) and more. You’re hoping for approvals and adding your child to waiting lists that can take up to a year or longer, all while working with your insurance company to understand coverage, copays, and deductibles. As you’re doing all of this, you’re also managing multiple new care teams—at school, at home, at church, and with healthcare providers. Keeping everything organized feels like a herculean task.
Here’s another truth: You shouldn’t have to become an expert, advocate, and administrator of healthcare and education overnight. A true care system wouldn’t ask that of you when you’re dealing with a difficult condition and the emotions that come with a new diagnosis.
But that’s where I found myself earlier this year. My new world felt like its own full time-job, so I had no space to tend to my own needs, and I was struggling to be productive at work. Even when I wasn’t with my children, my heart and head were with them.
What I learned about asking for help
Overwhelmed with red tape, a confusing healthcare system, and a million questions, and having survived three full-family COVID quarantines, I found myself alone on my back deck in tears. I was at my breaking point. I pride myself on being able to handle anything that comes my way, but at that moment, I realized I had to give myself a little grace. I decided it’s okay not to be okay, and that accepting help doesn’t mean I’m failing.
Once I got out of my own way, I realized how lucky I am. Ovia offers autism support to our clients and to our employees—parents like me. Ovia’s autism support includes a module that helps you learn on your own, discover tips and tricks, and cope with the stress of managing your child’s needs.
Ovia also offers coaching, which I like to call my “magic support system.” Our coaches are healthcare experts, and many have experience working with children with autism, so they can help you navigate the health system, your health benefits, paperwork, and everyday challenges with your kids and your own mental wellbeing. You can reach out to them directly, from 9 a.m to 9 p.m., 365 days a year. For me, it’s an unbelievable relief.
So what’s it like to have an Ovia coach in my corner? I’ll share a quick vignette from a few days ago. If you have a child with autism, you already know how important it is to have a predictable daily routine. I’m up every morning at 5:00 a.m. to set my son up for a good day. But in the real world, things don’t always go as planned. The other day we had one of those mornings. My son wouldn’t settle down and get on the bus, so I had to cancel my morning meetings to help. Stressful as it was, I knew I didn’t have to figure it all out alone. I started messaging the coaches right there in the school drop-off line and they came back with support and guidance to help get me through.
What I wish employers and payers knew about autism
I’ve been telling you a very personal story, but it’s not mine alone. One out of every 54 children is born with autism. If you’re an employer or a health plan, there’s a good chance many of your people are trying to make their way through healthcare mazes and significant distress right now.
Support, especially experienced coaches, can save your employees and members precious time and emotional energy by helping them:
- Get through mountains of paperwork.
- Find services their children need.
- Learn how to calm and care for their children.
- Understand how to advocate for their children and coordinate care.
- Manage stress and their own mental health.
- Know they have a safety net—even if it’s just someone to talk to—when it’s desperately needed.
You have a huge stake in the wellbeing of your employees, and something as life-changing and common as a child with autism is too big to ignore. Without backup, you’re likely to lose valuable employees who are just too overwhelmed by navigating the system and caring for their children.
Even if employees are able to tough it out with work and caring for their children, a lack of support can harm parental outcomes, and lead to costly, avoidable medical expenses. From my own experience, it’s easy to see how a parent who’s stretched too thin could neglect their own mental and physical wellbeing. In fact, studies show that parents of children with developmental disabilities have higher rates of depression1 and poorer physical health2.
For all of these reasons, support for parents should be universal—it’s in your people’s best interest, and yours, too.
Advice—and hope—for employers and parents with autistic children
I’ve told you a lot about my struggles, and at this point in my journey, my overwhelming feeling is gratitude for my support network, which lets me balance caring for my family with a job that helps other parents do the same.
If you’re where I was—trying to understand a diagnosis and figure out how to care for your child—please reach out for help early, when the journey is hardest. Give yourself grace, be flexible, and find support.
If you’re an employer, please don’t ask your employees to go through this on their own. Connect them to the resources they need to adjust, cope, understand, and move forward. It will help them, and it will help you keep them.
I wish you all a Thanksgiving filled with gratitude, and all the support you need.
1 Journal of Autism and Developmental Disorders: https://link.springer.com/article/10.1007/s10803-017-3063-y
2 Maternal and Child Health Journal: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7170980/