Taking time for yourself is challenging for any parent, but for parents of children with autistic spectrum disorder (ASD), it can seem downright impossible. Little things that many of us take for granted — drinking coffee while it’s still hot or having five minutes in the bathroom without interruption — are often out of reach for parents of children with ASD.
ASD is a developmental disability that can cause significant social, communication, and behavioral challenges, explains Kristyn Roth, chief marketing officer for the Autism Society, a national advocacy group based in Rockville, Maryland. “Each person with autism is unique, and because autism spectrum disorder is a spectrum, there are a range of added challenges and needs that vary per individual."
This variability is part of what makes caring for a child with autism consuming in a different way than caring for children with other disabilities, says Melanie Pellecchia, PhD, an assistant professor of psychology in psychiatry and leader of the parent training program at the Center for Mental Health’s Autism Clinic at the Penn Center for Mental Health, part of the Perelman School of Medicine at the University of Pennsylvania in Philadelphia.
“I think that families feel challenges around their child’s school life, their child’s social life, their child’s medical care, their child’s treatment — there are so many different pieces that parents are juggling and managing. It can bleed over into all aspects of their life and not leave a lot of time for everyday things,” says Pellecchia.
The Stress and Emotional Toll on Caregivers
Typical family outings like running errands or attending a school function can be worrying and full of uncertainty for parents with children with autism, notes Pellecchia. “A trip to the grocery store … can be really stressful because you don’t know if your child is going to have a meltdown,” she says.
Because other people often don’t understand what autism is, she explains, many parents experience feeling judged. “I’ve had parents tell me, ‘Everyone looks at me because they don’t know that my child has autism and they just think I’m being a bad parent,’” she says.
Those feelings cause additional stress because the parent is not only trying to manage their child in those situations but also the perception of other people. It can be lonely and isolating. “That’s difficult for any parent to handle,” Pellecchia says, but adds that “literature shows the rates of stress of parents with children with autism are higher than for children with other disabilities. The exact reason for that is unclear, but I think that it’s definitely something that we’re seeing over and over again.”
A study published in Clinical Practice and Epidemiology in Mental Health in July 2018 found that compared with parents of children with Down’s syndrome and type 1 diabetes, parents of children with autism reported a higher level of psychological distress and less social support.
“In our work with families, one of the most common issues that comes up is that parents often feel that no one in their neighborhood understands what they are going through, their own families don’t really understand what autism is, and that they lack a network or a social support system that they could turn to,” says Pellecchia.
Financial Strain More Common for Parents of Autistic Children
Most kids with autism have care from a number of different providers, including a behavioral therapist, an occupational therapist, and a speech therapist, along with other treatments that parents sometimes seek out on their own, like music therapy or recreation therapy, says Pellecchia.
“All these appointments can also be difficult for parents to schedule and manage along with their own very busy work schedules and their other children’s needs,” she adds. “Those certainly can be very costly, and I think parents struggle with figuring out what they should pay for independently and what is covered by insurance or the child’s school programs,” she says. “I have many, many families discuss the financial strain of trying to navigate all the different kinds of treatment that their child might be receiving."
Many mothers, in particular, take on the role of “case manager," advocating for their child with ASD. They're less likely to work outside of the home and on average work fewer hours and earn less than half of what mothers of children with no health limitations earn, according to Autism Speaks, a nonprofit advocacy group based in New York City and Princeton, New Jersey, with chapters throughout the country. It’s estimated that lost wages combined with the cost of special services can, on average, add up to about $60,000 a year during childhood.
Self-Care Strategies for Autism Caregivers
It's essential for caregivers to practice self-care in order to be able to find relief, reduce stress, and improve mental and physical health, according to Roth. “Caretakers are often wearing multiple hats, and respite allows people to return to their duties and fulfill the role to the best of their abilities,” she says.
Although there’s no one-size-fits-all approach for how to avoid burnout when parenting a child with autism, there are strategies that can help address many of the issues that families and caregivers face, says Pellecchia.
Advocate for services. “When I’m talking to families, I tell them they should advocate — that any services or treatments that their child is receiving should be covered by their insurance plan or by their child’s educational placement,” says Pellecchia. Contact your insurance company, find out what’s covered, and make sure that you aren’t paying for more than you should, she says. “Most of the treatments that are evidence-based can and should be covered by insurance,” she adds.
Consider joining a support group. Parent support groups can be helpful, though in reality it can be hard for parents to fit these groups into their lives, notes Pellecchia. “Most parents of autistic children are already very busy and overscheduled. Finding the time and managing the logistics, which sometimes involves childcare or driving across town, can feel like an extra stress,” she says. It’s a balance between trying to connect with a social network with other considerations, she adds.
Virtual support groups are becoming more common, and that can be a great way for families to have better access to a support network, says Pellecchia. The Asperger/Autism Network (AANE) offers support groups, chats, and online forums for the parents of children and teens with autism.
Make time for self-care. “At our center," says Pellecchia, "we have a project called Mind the Gap, where we work with families to help them understand autism and access services, and help parents to engage in self-care activities." Parents are encouraged to come up with small goals from week to week.
“Examples are things like, ‘I’m going to go for a 10-minute walk,’ or ‘I’m going to take a really long shower,’ or ‘I’m just going to go in my room and close the door because I need 5 minutes to myself,’” says Pellecchia. Those goals may sound really simple, but parents of children with autism often don’t do those things for themselves because they're so busy taking care of their families’ needs, she says.
The first step is coming up with a self-care goal, making sure it’s achievable, then writing it down and keeping it at the front of your mind, says Pellecchia. “I spoke with a mom who couldn’t remember the last time she had a manicure. She found 20 minutes to paint her nails, and it made a big difference in how she felt about herself,” says Pellecchia. “Simple things can go a long way in relieving stress,” she adds.
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If You’re Parenting a Child With Autism, Remember You’re Not Alone
“I hear from many parents that they feel isolated — they feel that they don’t have anybody who understands what they’re going through,” says Pellecchia. It can help to realize that although each situation is different, many families are going through very similar things, she says.
“A sense of community can be powerful and helpful; families that find that community — even if it’s online — can go a long way,” she says. It can make a difference, not only from an emotional standpoint but also in helping to manage the daily structures related to raising children with special needs and autism.