Parents of Kids With Disabilities Are in Mental Health Crisis
Compared to parents of kids without disabilities, they face higher rates of depression, stress, and anxiety—and it's definitely not their children's fault.
In 2020, Emmaline Yates was pregnant with her third child when her 2-year-old son began to experience intense meltdowns while also losing his ability to babble. Like countless other parents worldwide, She was struggling to navigate life amid the COVID-19 pandemic while caring for young children at home, but this morphed her high stress level into panic.
"He was developing typically until age 2," Yates recalls. "But I remember looking at him, holding his face, and being like, Where are you going?" As an occupational therapist, Yates knew that losing speech and avoiding eye contact can be signs of autism—and that evaluation is crucial for identifying and addressing developmental delays. Yet when she raised concerns with the family pediatrician, the doctor advised her to wait and see how things panned out.
"We didn't know he was autistic back then," Yates says. "My mental health overall was terrible at the time, and I was very anxious and weepy." Already prone to anxiety and depression, Yates refers to that time as one of the most traumatic periods of her life. In 2022, a developmental pediatrician confirmed that her son is autistic; he's been in intensive therapies for the past year.
Today, Yates sees a therapist. Her mental health is in a better place than it was during the nadir of the pandemic, but she says she still exists in a state of perpetual overwhelm, loneliness, and worry—often anxiety-spiraling over whether her son will ever be able to speak or live independently. Yates's specific situation is unique to her family, but as study after study after study shows, high levels of stress and mental health strain are incredibly common among parents of kids who have disabilities.
A quiet crisis
Talk to any parent whose child has a disability, developmental condition or delay, neurodivergence, or other unique needs, and you will find that these things are true: They love their children with an inextinguishable fierceness, they're locked in a constant struggle to secure services for their children that would help them thrive, and they often feel isolated and forgotten.
All of this can negatively affect a parent’s mental health in both the short- and long-term. "Based on my clinical experience, isolation, anxiety, depression, and burnout are common mental health issues faced by parents of kids [with disabilities]," says Tasha Oswald, PhD, a psychologist and the founder and director of Open Doors Therapy, a neurodiversity-affirming counseling group. She points to the "greater responsibilities" of parents whose children will not usually meet milestones on typical timelines, if ever: "The kids will need more help from their parents along the way. In addition, there are fewer relevant parenting resources and [more] misinformation. So, your job is harder and you’re given fewer resources. And on top of it, you likely don’t have a community who gets it."
"Based on my clinical experience, isolation, anxiety, depression, and burnout are common mental health issues faced by parents of kids [with disabilities]."Tasha Oswald, PhD
Dr. Oswald says that, out of love, many parents put their child's needs before their own. "Parents of kids [with disabilities] may not give themselves enough credit or grace—and they commonly pressure themselves to be ‘better,’” she says. “They try hard, but then beat themselves up and feel ashamed that they’re not doing better. They can get stuck in this shame cycle: They might not seek help due to shame, literal exhaustion, or fear that no one really gets it." And that creates even more need for help, which the parent is even less likely to seek.
Instead, the stress and burnout associated with parenting a child with disabilities comes as a result of navigating a complex and ever-evolving system of care.
"When I was in it really hard a couple years ago, my mental health was not even a blip on my radar," says Samantha Kilgore, whose 13-year-old son, Junior, has an autism diagnosis and a provisional diagnosis of early-onset childhood schizophrenia. Five years ago, when her mental health was especially troubled, she was working a full-time job, regularly taking Junior to six specialty clinics, meeting with the local school to develop an individualized education plan (IEP), and going to multiple children's therapy appointments each month. "You take time off of work to do those things, but you'd never take time off to go to therapy for yourself," she says of her experience. "Because of the care that you have to provide for your child, your care absolutely takes… I'm not even gonna say it takes a back seat—it's not even in the same car."
To be clear, children are not the cause of parents' mental health challenges. Instead, the stress and burnout associated with parenting a child with disabilities comes as a result of navigating a complex and ever-evolving system of care. It's the expensive evaluations, the clinical visits, the endless mountains of paperwork, appointments to schedule and reschedule, phone calls to insurance companies, and—more often than you might imagine—legal battles to secure necessary services like medicine, equipment, and education. "There's a lot of trauma that goes into parenting kids like ours," says Kilgore. "But it's not from dealing with our children's challenges—it's from negotiating our child's right to exist in a world that is not set up for them. The fact that we even have to negotiate is enraging."
Elizabeth Hughes, PhD, BCBA, the executive clinical director at the Institute for Applied Behavior Analysis in Orange, California, says that "trauma" is indeed the appropriate word to describe what parents of kids with disabilities must navigate bureaucratically and administratively. "I've had a parent say when they were initiating services with us, 'Gosh, this is more documentation that I had to deal with when we bought our house.' And I think buying a house for most people, though wonderful, is very stressful. But when it's over, it's over."
With securing services for children with disabilities, on the other hand, parents may need to visit multiple specialists (each requiring a copious paperwork), secure insurance preapprovals, and fill out informational surveys at least once a year to "prove" that their child requires certain services. "It's really wearying to always be worried that your kid might not get what they need, because someone who doesn't understand their needs is making a decision," Dr. Hughes says.
"It's really wearying to always be worried that your kid might not get what they need, because someone who doesn't understand their needs is making a decision."Elizabeth Hughes, PhD
Take school, for instance. Neurodivergent students, along with those with learning disabilities and other disabilities, have a legal right to a free and appropriate public education. At least annually, parents and educators come together to create an individualized education plan (IEP) that, ideally, builds upon a child's strengths and abilities. (Teenage students of a certain age—which varies by state but is often between 14 and 16—are invited, but not required, to attend their IEP meetings.) For parents who want to ensure appropriate accommodations for their kids, these meetings are high-stakes; securing the necessary support can be an uphill fight every time.
"I get very anxious before IEP meetings," says Erin Nenadich, whose 9-year-old daughter has dyslexia and attention deficit hyperactivity disorder (ADHD). "Even now that she is in a private school that specializes in language-based learning disabilities, we still have to meet with the public school for her IEP and it's always horrible." Nenadich says that having private school as an option is a huge privilege, but it's also a significant financial burden for the family. "I probably worry about money more than anything now."
Similarly, Jessica Miller*, whose daughter was born with hearing loss, points to red tape around access to care as being problematic. "My mental health issues are not stemming from her disability," she says. "They're from how we're having to manage everything around it that the world presents to us, whether that's education systems or trying to get supportive therapies or even going to the doctor for more hearing tests."
For instance, accessing an IEP in the New York City school system should have been straightforward—but it wasn't. "I was running all over the city with my newborn, trying to breastfeed in different offices as we waited for different assessments to get the distinctions that we needed to move forward with a city IEP [for my older daughter]," she says. "It was so challenging to get those services, even though there was a very clear-cut physical disability with lots of documentation." When Miller finally did secure access to services, they were largely based around her daughter's limitations. "It was all within a very negative framework and, as parents, that's really hard to hear. It certainly affected my mental health."
For some parents, seeking support leads to one dead end after another—so they uproot their lives in search of something better. After multiple cycles of her son's hospitalization, and fed up from people in the community telling her that he just needed "spankings and Jesus," Kilgore and her family moved from Missouri to Minnesota in 2021. "If you're not in a community where your child can thrive, you are not going to thrive—period," Kilgore says.
For her family, the move has been transformative. With a new care team, the right medication, and supports, like an inclusive summer camp and autism-focused charter school, Junior is "thriving," Kilgore says. "Not just doing okay, not just surviving; this child wakes up and has 3,000 new things to tell me. He has connections. He has a life outside of Mom and Dad."
Now that her son is more stable and she's no longer in a state of crisis parenting, Kilgore says she finally has time and energy to evaluate her own physical and mental health needs. "And they are many," she says. "I had zero idea about this five months ago—that I was in a place that needed support and help."
She's been taking care of long-overdue mammograms, dental visits, and her state of mind. "I don't even have the words to encompass how much better our lives are now versus two years ago. There are times when my face hurts from smiling so much because I'm not in this constant fight-or-flight pattern," she says. "Everything involving my son was a battle, and now he is not just connected to these different supports, but he is a valued member of his community. We had to have a foundation of joy for him in order for me to even consider being happy."
Miller and her husband also decided to move in search of stronger supports for their child. That drew them to Montgomery County, Maryland, which has a public deaf and hard of hearing pre-K program that emphasizes a child's strengths instead of focusing on their limitations. "The support that we've received here has been 180 degrees different from that in New York," Miller says. "All of the assessments are very positive and assets-focused. Even within areas for development, the phrasing is more like, 'She's working hard on these skills and we're so confident that she's going to get there.' That's been a total change for us." As Miller’s daughter thrives, she herself does as well: "My mental health has changed for the better since we moved and have this dedicated program that's so supportive and enthusiastic and celebratory of our daughter."
Miller and Kilgore acknowledge that simply having the option to move to a new place is a privilege. They're sharing their stories in part, they say, to show what can be possible for kids—and the parents who love them—if the right supports are in place. Why, they wonder, can't all kids and families have access to that?
What can be done?
Well-meaning people often tell burned-out parents of kids with disabilities to prioritize self care, but a spa day or therapy session can't solve what's inherently a societal and systemic problem. "I've taken advantage of therapy and medication, and I've gone to different support groups," Miller says. "Those are all really important, but they're also very individualized solutions. So I try to also keep in mind: At the same time, what can I be doing on a structural level? What does that look like?"
Another important aspect of supporting parental mental health involves addressing the isolation so common among parents of disabled children.
For her part, Miller has ambitions to serve on the PTA or school board, where she'll advocate for programs that serve different populations of students with disabilities. "Special education programs really benefit [neurotypical] kids [and kids without disabilities], too, because they're enabling them to come into contact with a diverse cohort of our kids. And accommodations are actually good for everybody and meaningful on a structural level."
Another important aspect of supporting parental mental health involves addressing the isolation so common among parents of disabled children. "Finding parent communities who deeply understand your situation can be validating and help you reconnect to your inner wisdom," Dr. Oswald says. "Talking with others who don’t get your parenting challenges and who give unsolicited advice or judge you can lead you to question your parenting and disconnect from your inner wisdom. Finding a supportive community can help you feel validated, appreciated, and inspired. Finding a community where you can express your worries and speak about those things that feel shameful can release you from the shame cycle."
That's proven true for Liesa Arlette, whose 8-year-old son has level 2 autism spectrum disorder, ADHD, sensory processing disorder, and central auditory processing disorder. She runs a monthly caregiver support group in the Los Angeles area. "What I hear from other parents is relief in seeing that other people 'get it,'" Arlette says. "The amount of invisible labor that we do in managing our kids' schedules and getting people to empathize with our kids is work we're doing all the time. And it is work that we don't have to do with our parenting peers when we're in a shared space together." Crucially, Arlette says, the group is designed to be an easy, no-pressure, drop-in format—making the group a source of support rather than a place asking more from stretched-too-thin parents.
And for people who can't make it to IRL groups, there's always Facebook. "I do not use Facebook for anything other than Groups," Nenadich says. "The community of the groups definitely helps with the feelings of isolation. Not only do you hear other people's stories—and it can give you hope—but you also have access to the collective resources of the group… It's a group of people who know exactly what you're going through."
That doesn't mean that people without disabilities should back away, though. For people who don't have disabilities, actively fostering an attitude of inclusion is one of the best ways to help kids thrive while reducing parental feelings of isolation. (So if a child uses a wheelchair, for example, and you’re planning a birthday party, check to ensure potential venues have easy accessibility.)
Yates says that even when her family can't make it to an event, it still helps to realize that someone wanted them there. Additionally, she says that to be inclusive, people should understand that her son may present unusual or challenging behaviors if he's dysregulated—and that's just part of who he is. "My kid deserves to be everywhere your kid deserves to be, even if it's hard for him to be there," she says.
All of the parents interviewed for this article said that, outside of systemic changes, they deeply wish people would work harder to "see" them and their children. "If you personally know people dealing with [disability], don't be afraid to ask questions to learn more," Nenadich says. It's okay to be curious. If someone doesn't want to talk about it, you'll be able to tell pretty quickly. It helps us feel less alone when our friends understand." (And don't, she advises, say things like "I don't know how you deal with it" or call a parent a hero—it usually winds up othering them. "If you're not sure what to say, a simple 'That is a lot' will suffice," she suggests.)
Just showing up with empathy can make a significant difference in combating feelings of isolation. "You might want to offer them advice in hopes of helping them, but listening without judgment can often be much more helpful than advice," Oswald says. "You can help them feel seen and appreciated. That can go a long way toward helping them feel less isolated. And that can be healing."
*Name has been changed
Well+Good articles reference scientific, reliable, recent, robust studies to back up the information we share. You can trust us along your wellness journey.
- Thurm, Audrey et al. “Patterns of skill attainment and loss in young children with autism.” Development and psychopathology vol. 26,1 (2014): 203-14. doi:10.1017/S0954579413000874
- "Parental Stress in Families of Children With Disabilities." Intervention in School and Clinic, 2017, https://doi.org/10.1177/1053451217712956.
- Chakraborty, Bhaswati, et al. "Stress-mediated Quality of Life Outcomes in Parents of Disabled Children." Journal of Indian Society of Pedodontics and Preventive Dentistry, 2019, https://doi.org/DOI: 10.4103/JISPPD.JISPPD_266_18.
- Siracusano, Martina et al. “Parental Stress and Disability in Offspring: A Snapshot during the COVID-19 Pandemic.” Brain sciences vol. 11,8 1040. 5 Aug. 2021, doi:10.3390/brainsci11081040