My child is autistic. I am so tired.
posted: Sep. 27, 2022.
Karen and Joe were delighted to be parents after 12 years of marriage. Their first and only son, Tristan, came as a surprise, after the couple had come to believe they would never be able to have children.
“We got married at 28, so to be first time parents at 40, 41 – it was a shock to the system, I’d say,” says Joe with a laugh. “You get used to doing things a certain way, and then bam, everything changes.”
While the adjustment might have been challenging enough without additional adversity, the couple realized they were dealing with circumstances none of their friends had ever come across when they were raising their own young children. At the age of two, Tristan “didn’t seem typical, even though we were the last people to know what typical was,” shares Karen. “Call it instinct, call it excessive concern, but we went to the doctor pretty quickly with what we knew just wasn’t your typical experience.”
When Tristan was diagnosed with autism, the couple felt “like we fell down a total rabbit hole,” says Joe. “Suddenly neither of us were sleeping, we had to adjust what we were eating to accommodate Tristan, and all of those markers of growth that the books told us we’d have… none of it was aligning. Forget regular. This was a brand-new ball game.
“And it was exhausting. Still is.”
It’s the exhaustion that seems to impact parents the most. This kind of exhaustion is typically described as fatigue, not mere tiredness.
Fatigue is different because it can’t be diminished simply by grabbing a few extra hours of sleep or rest. It “hits” differently – while some tiredness can even feel good (like after a satisfying workout or a great day getting a lot done), fatigue is a negative experience.
For parents with autistic kids, fatigue can impact their own day-to-day functioning as well as their coping skills. They may experience forgetfulness, minimized patience, and more irritability. Because parents of autistic kids are consistently challenged to adapt to and meet their child’s changing requirements and are called upon to find more energy even when it feels like there’s nothing left, the fatigue sticks.
What if you’re one of these parents or caregivers who are experiencing fatigue?
The good news is that there’s relief. The following tips are simple, but we understand they might not be easy. As a caregiver, we urge you to be reminded that it’s just as important for you to take time out for yourself whenever possible as it is for you to take care of your child. If you are burned out, ill, and weighed down, taking care of another person just becomes next to impossible.
First tip: get some help. If you’re fortunate enough to have supportive family members or friends who rally around you, ask them for a few hours during the week when they might be able to take on some the household duties, like grocery shopping or laundry, or even just to talk. You may also want to gather some information about government programs or social programs that offer support systems if you don’t have an army of loved ones nearby.
Second tip: take a breather. Don’t feel guilty for needing a few minutes – or even a few hours – to yourself every once in a while. No one will blame you for wanting to disconnect for just a little bit. You’ll be back.
Third tip: be there for you. What do you love doing? Do you like listening to music? Great. Put some headphones on while you clean. Do you love the movies? Book a movie night for yourself after your little one has gone to bed. Do you enjoy dinners out? Hire a trusted sitter once a month if you can, and get a little fancy.