There is hope, even when your brain tells you that there isn’t.”
The Centers for Disease Control and Prevention (CDC) advises to call your doctor or your child’s doctor if your mental health or your child’s interferes with daily activities for at least 14 days in one month.
Despite the prevalence of mental health conditions in people with cerebral palsy, research and acknowledgement of these concerns have been historically lacking. Perhaps this partially explains why people with cerebral palsy do not always receive the mental health treatment or support they need. This isn’t so different from the general population where only about half of people with mental illness receive treatment.  But, due to lack of awareness, the numbers may be even higher for people with CP.
In 2018, an estimated 17.4 million (32.9%) adults with disabilities experienced frequent mental distress, defined as 14 or more reported mentally unhealthy days in the past 30 days. Frequent mental distress is associated with poor health behaviors, increased use of health services, mental disorders, chronic disease, and limitations in daily life. In children with cerebral palsy we know that 1 in 2 children with CP also have specific mental health disorders, and 2/3 have persistent challenging behaviors that interfere in the child’s life and necessitate a professional evaluation.
By not accessing treatment, people with cerebral palsy are not able to live their healthiest lives. The need for treatment also disrupts the overall wellbeing of the family. However, with early detection and treatment, the individual’s overall health and wellbeing, and that of the family, can greatly improve.
Understanding Mental Health in Cerebral Palsy
The mental health & wellbeing in people with cerebral palsy is influenced by many factors. The following combination of circumstances may increase the risk of developing a mental health disorder with cerebral palsy:
- The initial brain injury or impairment that led to cerebral palsy may cause a child or adult with CP to have less capacity for adapting to new or unexpected situations, with less reserve to handle stress, change or problems.
- There are symptoms and conditions related to cerebral palsy that can influence mental health status and diagnoses. In adults with cerebral palsy depressive symptoms are associated with fatigue. Early interventions to sort out and address these issues may help solve complex problems in behavior, mental health and overall wellbeing.
These conditions may include:
Secondary issues related to the social and emotional experience of living with CP that may impact mental health too.
- limited experiences for socialization
- restricted interactions with peers and adults
- experiences of negativity related to having a disability
- barriers to education
- problems in the workplace or with employment
- relationship difficulties
- healthy family interactions
Diagnosis and Treatment
- “It is very important for the CP community to be very clear when they seek (mental health) therapy of any sort to educate the provider about the scope of CP of their functioning. Clarify issues that are related to CP and that are separate. Become your own advocate and educate your providers.” -Isabella Shultz, PhD, Rehabilitation Psychologist, Professor at the University of British Columbia, and American Psychology Association (APA) Co-Chair Task Force on Guidelines for Assessment and Intervention for people with disabilities
- Early recognition and diagnosis of mental health disorders in people with cerebral palsy allows treatment and social support services to begin before problems become debilitating. Effective and timely interventions can minimize suffering, help an individual establish good mental health hygiene, and teach supportive social habits that can bolster mental health. Establishing positive mental health habits early in childhood or adolescence is particularly important since mental health disorders may persist across the lifespan.
- In an ideal setting, a multidisciplinary team will regularly assess the psychological wellbeing of each child, adolescent and adult, in order to diagnose and treat mental health conditions, and refer the individual to a mental health provider. Providers who treat mental illness include licensed mental health counselors, psychologists, and psychiatrists. Ideally you want to find a psychologist with experience treating people with disabilities and in particular with the training and experience treating individuals with both a brain injury and mental illness.
- It also may be helpful to reach out to a member of the professional team even if they don’t specialize in mental health or psychiatry. They can often assist with referrals or coordinate support with other members of the clinical team. At the very least, one or more members of the cerebral palsy care team will be helpful in coordinating with a treating mental health professional.
- As mentioned earlier, many aspects influence the psychological and psychiatric wellbeing of the individual with cerebral palsy; from biology to social experiences to the influence of unaddressed cerebral palsy symptoms (ie pain, fatigue, difficulty sleeping). It’s important that the mental health of the person with cerebral palsy is evaluated from all of these vantage points. Despite our need for more specific research into how to best treat mental health conditions in people with cerebral palsy, valuable tools from the general population can be applied to people with cerebral palsy. Some of these tools include cognitive behavioral therapy (CBT), prosocial and assertiveness skills support, some medications, and participation in adapted sports and recreation activities.
The Future of Research and Care for Mental Health Disorders in Cerebral Palsy
Cerebral palsy clinicians and researchers agree that mental health concerns are an under-represented area of study. This absence of research negatively influences the access to quality mental healthcare for people with cerebral palsy.
..For many years the predominant focus in cerebral palsy research was on addressing motor impairments and related conditions. It is only in recent years that there has been recognition that cerebral palsy is a complex lifelong set of conditions that entail mental health risks.”
Professor and Pediatric Neuropsychologist, University of Michigan
In order to resolve this, the cerebral palsy community requires additional and more appropriate screening tools for mental health than what currently exists. Tools, for instance, that separate symptoms related to the movement disorders of cerebral palsy from commonly noted signs of mental health disturbances (ie decreased energy, moving or talking more slowly, difficulty sleeping pains, headaches etc) can help with early diagnosis. Education and awareness among clinicians about mental health risks in their patients with CP must improve as well.
As more information about mental health in people with cerebral palsy comes out, and we better understand the diversity of biological and social mechanisms involved, more targeted and effective interventions will emerge.
Join the CP Research Network today as either a clinician, researcher, parent or self-advocate and help us advance mental health research.
For more information, download our free cerebral palsy tool kit.
Resources and Tips for Medical Providers Who Treat People with Cerebral Palsy
- Recognize that there is a higher risk for mental illness for the CP population across the lifespan, but it remains under diagnosed and under treated.
- Reference Chapter 13 of Palsy Children and Youth with Complex Cerebral Palsy Care and Management, edited by Laurie J Glader and Richard D. Stevenson Mac Keith Press, 2019, p. 219-220
- Treat pain, sleep, nutrition and any underlying issues that could contribute to mental health disorders.
- Screen for mental health and/or refer to a specialist.
- Join MyCP and help advance mental health research for people with CP
Resources for Families and Individuals with Cerebral Palsy
- Suicide Prevention Lifeline External
- Veterans Crisis Line External
- Substance Abuse & Mental Health Services Administration (SAMHSA) National Helpline External
- OK2Talk Helpline Teen Helpline External
- Crisis Text Line
Text SIGNS to 741741 for 24/7, anonymous, free crisis counseling
Find a Psychologist
Find a Psychiatrist
- American Psychiatric Association’s Psychiatrist locator
- American Academy of Child and Adolescent Psychiatry’s Child and Adolescent Psychiatrist Finder
References and Sources
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 211) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, T. (2020, November 30). The mental health of people with disabilities. Retrieved June 10, 2021, from https://www.cdc.gov/ncbddd/disabilityandhealth/features/mental-health-for-all.html
- Krahn, G., University, O., Havercamp, S., University, O., Whitney, D., Medicine, M., . . . Susan Havercamp, G. (2019, September 3). Prevalence of mental health disorders among adults with cerebral palsy. Retrieved June 10, 2021, from https://www.acpjournals.org/doi/abs/10.7326/m18-3420
- Kimberley J. Smith, P. (2019, March 01). Risk of depression and anxiety in adults with cerebral palsy. Retrieved June 10, 2021, from https://jamanetwork.com/journals/jamaneurology/fullarticle/2719463
- McMahon, J., Harvey, A., Reid, S., May, T., & Antolovich, G. (2020, May 15). Anxiety in children and adolescents with cerebral palsy. Retrieved June 10, 2021, from https://onlinelibrary.wiley.com/doi/abs/10.1111/jpc.14879
- The National Institute of Mental Health Information Resource Center. (n.d.). Statistics. Retrieved June 10, 2021, from https://www.nimh.nih.gov/health/statistics/index.shtmlh
- Parkes, J., White-Koning, M., Dickinson, H., Thyen, U., Arnaud, C., Beckung, E., . . . Colver, A. (2019, September 3). Psychological problems in children with cerebral palsy: A Cross-sectional European study. Retrieved June 10, 2021, from https://pubmed.ncbi.nlm.nih.gov/18081767/
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 222) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 219) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 220) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 219, p. 222) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Glader, L. (2019). Children and youth with complex cerebral palsy: Care and management (p. 219, p. 220) (1399979700 1021047818 R. D. Stevenson, Author). London: Mac Keith Press. doi:https://www.mackeith.co.uk/shop/complex-cerebral-palsy-care-and-management/.
- Warschausky, Seth. Personal interview. 18 April 2021.