There is concern amongst many in the disability community that this lack of knowledge is leading to adverse effects for those with the condition, especially when it comes to mental health. In my experience as someone with the condition, that lack of focus on mental health begins in childhood. Luckily, the conversation and research around mental health for those with CP is expanding.

Cerebral Palsy Enters the Wider Discussion

The current concern partially stems from cerebral palsy having re-entered the spotlight over the course of the pandemic. The CDC placed it on its list of conditions that could heighten the severity of COVID-19, with research from physicians at the Mayo Clinic finding that much of the concern lies with “impaired movement and function of the diaphragm muscle.” For their part, the CDC’s concern is more focused on “underlying medical conditions, living in congregate settings, or systemic health and social inequities.” In other words, while more research needs to be done about how COVID-19 intersects with cerebral palsy, the largest federal medical organization acknowledges that those with CP are at higher risk because of societal factors. In essence, ableism kills. Adam Cohoon, an accessibility advocate and artist, shares that there was no mental health specialist to provide support during childhood. This was despite the myriad of medical specialists who Cohoon was interacting with on a regular basis.  “It’s weird, growing up with CP it seemed like I had a medical team for everything else. But there was nobody on my medical team actually looking at my mental health. You have eye doctors, orthopedic specialists,  breathing specialists, educational specialists, everything else is actually talked about other than my mental health.” Cohoon says that the health tools being made available due to pandemic-related isolation, particularly those related to technology, need to remain even as restrictions lift.  “I don’t want people to think, ‘COVID’s over,  let’s put everything back in the box.’” Recent research has pointed towards a link between cerebral palsy and anxiety and depression. In a 2018 study published by JAMA Neurology, a team of researchers found that those with cerebral palsy were at a higher risk of exhibiting symptoms than those without once they reached adulthood. In their words, “These results could have been observed because adults with CP present with many physiological, psychological, social, and health-related risk factors that have been shown to be associated with depression and anxiety in the general population such as multimorbidity, increased pain, functional limitations, noncommunicable diseases, difficulties with social relationships, and poorer sleep.” While this work was focused on adults, the authors pointed directly to the research area’s disproportionate focus on children—leading to “a lack of evidence in adults with CP”—as a reason for their study.  Despite that heavy focus on children with cerebral palsy, Amanda Leduc, a disability advocate and author, repeats a common refrain of many in the community: That mental health really wasn’t discussed in relation to her cerebral palsy. “I don’t think we talk about the connections between CP and mental health enough. The cumulative toll of physical strain on the body and how that impacts one’s day-to-day has a tremendous impact on mental health—often because of pre-existing ideas that society has around ‘productivity’ and what a person must ‘do’ or ‘be capable of’ in order to show themselves as having value.”

When you’re a kid with cerebral palsy, it’s easy to focus on the physical aspects of your brain damage. Spasms are easy to see, wheelchairs and other adaptive equipment are costly to sort out and take an inordinate amount of time to organize; there are endless medical appointments to get to, orthotics to get fitted—the best part is picking out the design—and surgeries to worry about. I traded physical education classes for physio appointments, my parents enrolled me in specialty physical therapy programs and sessions where I learned to ride a wheelchair up an escalator—to this day, I’ve only fallen twice. My only childhood memory of mental healthcare was being thrown out of an elementary school counselor’s office for being too angry—my legs went so spastic that I crawled out of the appointment like that scene in The Grudge. I only saw a therapist on a semi-regular basis during university. Anger, by the way, was labeled as part of “unpleasant symptoms in children with cerebral palsy,” in recent research into alternative therapies for those with CP. In short, when treating your body’s symptoms is like playing the world’s worst game of Whack-a-Mole, mental health tends to take a backseat.  For Dom Kelly, a disability justice advocate, his experience of mental health care was within other frameworks—like during eating disorder and alcoholism recovery—rather than in connection to his CP. He says that the number of conversations he’s gone on to have about cerebral palsy and its intersection with mental health have grown through social media.  “The folks that I knew who had CP, I never really talked about that, about the impact of our CP on our mental health.  And now, I’ve talked to more and more people who also experienced some of the medical trauma,  that also had experiences in school when they were kids where teachers would say and do things, other kids would say and do things, that actually impacted their self-esteem in ways that maybe didn’t show up, or we weren’t aware of until we were older.”

Research Still Heavily Focused on Parents

Much like when you look at adult-focused research in those with CP, a lot of the work being undertaken is focused on the mothers of these children. An exception is a 2018 study by a set of University of Michigan researchers that also identified a higher likelihood of mental health disorders in children with cerebral palsy. They were particularly interested in the link between physical risk factors and mental health disorders “Children with CP are susceptible to mental health disorders because of a variety of physical risk factors and factors that affects social development, including communication problems, developmental comorbidities, and mobility restriction.” Much of the research on cerebral palsy and mental health acknowledges that with the wide spectrum of symptoms and co-morbid conditions that can appear with cerebral palsy (such as epilepsy and intellectual disability) the answers as to why mental health conditions are more likely in the CP population are difficult to entirely pin down.

At this point, the next stage of research appears to be to track the effectiveness of mental health interventions in those with cerebral palsy at all ages. Kelly says that one oft-overlooked aspect of his experience is that his mental health can be more disabling than his cerebral palsy, even when the latter may be more obvious or more often discussed.  “I also have a couple of different mental health disabilities and, talk really, really, openly about those and that sometimes my mental health disabilities, I feel, are more disabling than my CP. Depending on the day when you talk to me.” What does that mean for me? I’m not sure if vindication is the right word—it’s helpful to know that I’m not alone, after all—but it does make me hopeful that children with CP will have an increased level of access to mental healthcare. Perhaps more importantly, it’s another area of lifelong care for those with cerebral palsy to improve as we begin to drag the medical community-at-large away from only conceiving of cerebral palsy as a pediatric condition. Lastly, speaking to people with CP who have found and built a community around mental health discussions means that, like those who spoke to Verywell Mind for this story, I feel less alone.