Caregiver Self-Care Guide: 10 Ways Parents of a Child With Autism Can Make Space for Themselves
Several weeks ago my son with autism experienced a meltdown that was hard on both of us. When he finally settled down, I sat in my car and ate fries while crying to myself before I went inside to face my reality.
It was the only way I could have a few moments to myself, feel what I needed to feel, and allow myself to be selfish for once by not sharing my food. Sometimes, that’s what self-care looks like when you are the parent of a child with autism. Rarely is it enough, but it will suffice when nothing else seems feasible.
From sensory aversions, meltdown triggers, breakdowns in communication, and varying therapies, it’s likely that no two days are the same when it comes to raising a child with autism. According to an analysis published in the National Library of Medicine, parents of autistic children experience more stress than those raising neurotypical children or children with other disabilities, such as Down syndrome.
More times than not, in a sink-or-swim situation, parents of children on the autism spectrum routinely find themselves sinking but continuously fight to swim. When they finally find themselves gasping for air is when onlookers want to preach about self-care.
Self-care has never been a one-size-fits-all phenomenon, but for parents with children on the spectrum rarely does any size seem to fit. Finding babysitters, going on vacations, and all the other commonly recommended self-care activities are often plagued with barriers and hoops to jump through if you have a child with autism.
Still, parents who pour into their neurodiverse children need and deserve to find methods of self-care that work, so they can fill themselves up too. Otherwise, they’re not doing themselves or their children any favors.
Self-care will look different for everyone; it’s not all about bubble baths. It might just be choosing things that can make your life a little easier. Here are some realistic and relatable self-care suggestions for parents of autistic children, some of which I’ve done myself.
Allow Yourself to Have Wants
“As parents of autistic children, we need outside activities that have nothing to do with autism,”
says Keischa Pruden, licensed therapist, and owner of Pruden Counseling Concepts. “Yes, I know that can seem impossible, but if we can be creative with our children’s needs, we can be creative with ours too,” she explains.
For many parents, raising children means giving up parts of yourself, such as your free time, hobbies, and a good night’s sleep among other things. However, a big part of self-care when parenting neurodivergent children is maintaining an identity outside of them and doing it anyway you see fit.
I had to relearn what it meant to put myself first and acknowledge my desires. While it may be too hard to think of any hobbies you could feasibly take up, it’s easy to simply acknowledge your wants of the day. Even something as simple as enjoying a cup of herbal tea while it’s still warm could be a start in relieving pressure and practicing self-care.
“Encouraging parents to take time for themselves is a powerful gesture that also reminds them that they’re worth it,” says Tasha Holland-Kornegay, Ph.D., wellness expert for Nike and owner of Our Treatment Center.
Ask for Help
Good babysitters can be hard to come by, and it can be even more difficult and costly to find someone who can deliver the specialized care neurodiverse children require. As a result, parents end up burning themselves out by doing everything on their own.
Parenthood for children with autism means not only asking for help but accepting it as well. Respite care can be extremely helpful in getting quality caregiving services if you need a break. Or even accepting comfort food from organizations such as Lasagna Love or a meal train can be helpful in giving yourself a reprieve from cooking and meal planning so you can practice self-care.
Take Advantage of Handouts & Perks
When discussing autism you’re likely to hear about the frustrations and obstacles that you’ll need to overcome. However, you rarely hear about the advantages. Some of those advantages include the ability to get a handicap placard/license plate in some states, passes to skip lines at amusement parks, or even social security depending on your income. If you’re not sure if it’s possible to get special access or accommodations, simply ask. If it will make your daily life easier, it’s worth asking and having.
Take Care of Your Mental Health
From ABA therapy to speech therapy, to cognitive behavioral therapy and more, you likely spend a decent amount of time signing up for, ushering your child to, and participating in various therapies to support your child. However, prioritizing therapy for yourself is important.
“It’s definitely helpful to receive autism-specific therapy to learn behavior management strategies and gain psychoeducation around what parents can expect from their neurodiverse child,” says Hayley Wilds, licensed counselor and owner of Center for Creative Counseling.
However, participating in family therapy can be an excellent self-care strategy in addition to autism-specific services. Family therapy can help the family in developing a household structure that supports the unique challenges that come with autism. It can also allow time and space for parents to grieve or adapt their expectations and hopes for their child, work to accept their child’s neurodiversity and all that comes with, and develop a new frame that honors their child and family identity, she explains.
Find a Support System
If a therapist is out of reach, support groups can be so helpful in filling in the gaps of receiving closure, tips, and finding peace.
“[You need] a social circle that gets it,” says Pruden. “Having a small group of friends and family members who understand my life may be busy because of autism-related activities has been so important in my emotional life.”
Pick Your Battles
When you end up fighting everyone from your insurance provider, to your in-laws about whether or not your child even has autism, and teachers for not following the IEP, every day can feel like war.
While some fights may be around for a while, there may be some you’ll find just aren’t worth the struggle. Maybe it’s refusing to explain autism to an acquaintance who isn’t even trying to understand. Maybe it’s ceasing arguments with your child to cut their hair amidst their sensory issues and just letting it grow out. Whatever it is, ask yourself if it’s worth the fight and if maybe stepping back will bring a little ease back into your life.
Look for Your Child’s Strengths
Because an autism diagnosis often requires more therapies and doctor appointments than a typically developing child, it also means spending more time discussing everything “wrong” with your child. It makes sense that parents feel overwhelmed, unhappy, and dissatisfied when having to focus on negatives so frequently.
It also may not be healthy for the child. Spend time thinking of your child’s strengths and talk about those too. Discussing all the good that came from the diagnosis could do wonders in the self-care department.
Give Yourself Grace
Finally, a large yet necessary part of self-care when parenting children with autism is giving yourself grace. It’s easy to feel the parental shame of thinking you aren’t doing enough. There can be so much you don’t understand, feel like you missed out on, or blame yourself for that you end up feeling guilty, frustrated, and burned out. However, lowering your expectations in some situations, forgiving yourself, and celebrating even the small wins can go a long way in self-preservation.
Trust that you are doing the best you can with your circumstances. When you lift yourself up, your ability to take care of yourself and your child improves, experts suggest.
Allowing yourself to feel whatever you need to feel can help, says Holland-Kornegay. Carving out space to self-reflect is at the heart of addressing the sense of “being lost,” especially for parents of children with autism.
“Too many of my clients relied on avoidance to tend to their internal states as if they should help those around them but never themselves,” she said. “It’s a step toward learning about yourself in relation to the world and the autism community, and understanding your own feeling about your role as a parent and your future.”
There’s no right way to connect with these experiences – as long as you practice self-love and try to understand your feelings, you’re on the right path.
The Impact of Parenting Stress. (March 2013). National Library of Medicine.
Finding Respite Care. (September 2021). Kids Health.