Burnout Is A Real Threat To Parents Of Kids With Special Needs

We’ve spent years and thousands of dollars on summer camp experiences, extracurricular activities, and therapists to help our son adjust to various social situations — which he struggles with understanding. At the age of eight, he was diagnosed with Aspergers Syndrome or Autism Spectrum Disorder (ASD). Since that diagnosis, my wife and I have given more of ourselves in every way to help build up areas which he could use more support in, namely, communication, tone, and social interactions.

We are trying, and we are tired — even more so lately, given the schedule rearrangements and cancellations we’ve had to make thanks to COVID-19.

I overextend myself each day, in every way, from scheduling tele-visits and medication consults for my son to registering him for high school while supporting all my children’s social and emotional health during this stressful time. I am spent. I long for that magical hour of silence after the kids go to bed before I go to bed myself. What I am feeling is parental burnout. It’s a thing, and I am living proof — and I’m also not alone. Today, 1 in 54 children are diagnosed with an autism spectrum disorder or ASD, and it’s likely that many of their parents and caregivers are feeling it too.

Former AAP President Dr. Colleen Kraft is the Senior Medical Director of Clinical Adoption at Cognoa, a leading digital behavioral health company focused on pediatric behavioral health. She spoke to Scary Mommy and provides parents of autistic kids a few extra tools for our self-care toolbox. Her advice hit home for me in so many ways.

Kids with autism require a little extra support, attention, and energy from their parents as we usher them into adulthood. Dr. Kraft explains why burnout looks different for the parents of autistic children: “Parents have limited time when they are not ‘on-call’ for their child with autism,” she says. “This is the source of burnout; it is similar to the parents of all high-needs kids, including children with behavioral health disorders, children with medical complexities, and children who are very young and require lots of direct supervision.” All high-needs kids have this in common: you can’t expect to leave them unattended for long (or at all, in some cases.)

“Parents love their children,” says Dr. Kraft, “but as humans, we all need a break sometimes.” And parents of kids with special needs, it seems, get fewer breaks than anyone — especially when our world is turned upside down due to COVID-19.

So how do you know if you’re experiencing parental burnout? Dr. Kraft says most of those red flags are physical: “The most common sign of burnout is fatigue, physical and mental, as well as a lack of interest in doing anything, even the things you enjoy, or interacting with anyone,” she explains. “This is when parents need to look for the daily ‘fixes’ — small pleasures that are their own, or interactions with their child that are easy and positive.”

This one is hard for me, I am not going to lie — having enough mental, physical, or emotional space to turn the mirror inward to look at how I feel and what support I need. But when I take a bubble bath, take a long walk, or set aside time for myself — giving me something to look forward to — I feel its importance in my soul.

Dr. Kraft suggests finding one thing you can do with your child, like sharing a meal or a favorite activity together. Some days you might not be feeling like doing anything additional with your kid, but some days you will — and on those days, you’ll see just how resilient you both are. Additionally, Dr. Kraft urges us to recognize what our bodies need that day, whether it’s a conversation with a friend, extra sleep, or a dish of ice cream. “Self-care with limited time, particularly for parents, means limiting the energy you expend and enjoying the small pleasures in your life when you can,” she says.

On a weekly basis, Dr. Kraft advises us to try to do things that will build our physical and mental health. This is where a primarily healthy diet, exercise, and conversations with friends and family can help support a positive routine. If you have a spouse or partner, she suggests building time into your week to give each other a break — and she advocates seeing a therapist if you can, as the appointments will not only be beneficial for your mental health, but also obligate you to take a little time for yourself. At the end of each day, we must show up for our kids, no matter if they are autistic or not, but we must also remember to nurture and care for our own physical, emotional and mental health too.

These days, after my kids go to bed, I watch Love on the Spectrum. It is a Netflix docu-series that delves into the quest for love and the dating experiences of autistic men and women. I binge-watched episode after episode hoping to glean ways I can one day help my own autistic son through his relationships. For now, though, I am finding solace in what the parents of these young men and women share during these episodes. They are happy, healthy, and proud parents, and I know too, one day that will be me. As long as I keep my needs a priority, too, and not just an afterthought.