By: Khomotso Fredah Matlala

Intellectual Disabilities and Epilepsy

What are intellectual disabilities?

The Diagnostic and Statistical Manual of Mental Disorders defines intellectual disabilities as neurodevelopmental disorders that begin early in the developmental period, usually during childhood. These disorders are identified by significant intellectual difficulties (such as reasoning, problem-solving, and learning) and difficulties in adaptive functioning, including conceptual, social, and practical areas of living (American Psychiatric Association [APA], 2022). In the DSM-5 TR, the formal term for this condition is “intellectual developmental disorder.” These limitations affect an individual’s ability to function independently across various environments. For some individuals, the symptoms may have minor effects, and as a result, they may be able to lead independent lives. For others, the effects may be severe such that they require lifelong assistance and support (Cleveland Clinic, 2023).

SYMPTOMS AND CAUSES

Individuals with intellectual disabilities usually present with cognitive, adaptive behavior, social, and practical symptoms as follows:

• Cognitive (intelligence-related) Symptoms: Symptoms that affect one’s ability to understand and interact with the world around them. Goes beyond the traditional language and math skills that can be measured using an IQ test (Cleveland Clinic, 2023). The individual may have the following difficulties:
• Difficulties in learning.
• Slowed reading speed.
• Difficulties with reasoning and logic.
• Problems with judgment and critical thinking.
• Difficulties with problem solving and planning.
• Distractibility and difficulty focusing.

• Adaptive Behavioural Symptoms: revolve around abilities and learned skills that are required for one to live and support oneself independently. Symptoms include challenges in communication, social skills, self-care, and independent living. Needing help from parental figures or other caregivers with basic daily activities (bathing, using the bathroom, etc.) past the expected age. Difficulty learning how to do chores or other common tasks. Trouble understanding concepts like time management or money. Needing help managing healthcare appointments or medications.
• Social Symptoms: Difficulty understanding social rules, forming relationships, and interpreting social cues.
• Practical Symptoms: Trouble with daily activities such as personal hygiene, managing money, and occupational tasks.

Causes

There are multiple causes and contributing factors that may contribute to the development of intellectual disabilities. These factors can influence the development of intellectual disability before or during birth or during the earliest years of childhood (Cleveland Clinic, 2023). For most individuals, the exact cause of intellectual disabilities is unknown. However, most cases result from differences in brain development. In rare cases, the disability can be caused by brain damage resulting from an illness, injury, or other events occurring before the age of 18 (Cleveland Clinic, 2023).

• Genetics and inheritance: intellectual disabilities can emerge because of genetic mutations that can be passed from generation to generation. This includes disorders such as Down syndrome, Fragile X syndrome, and phenylketonuria (PKU).
• Infections: Infections such as toxoplasmosis and rubella can disrupt fetal development, resulting in conditions that can cause intellectual disability, such as cerebral palsy.
• Prenatal Factors (Teratogens): Exposure to alcohol, drugs, infections, or poor maternal nutrition during pregnancy.
• Perinatal Factors: Complications during childbirth, such as oxygen deprivation (birth asphyxia) or preterm birth.
• Postnatal Factors: Traumatic brain injury, infections (e.g., meningitis), malnutrition, or exposure to toxins like lead.

Management and Treatment

Intellectual disabilities are lifelong conditions in that they cannot be directly cured (Huizen, 2020). However, an effective treatment can lead to a good quality of life. The treatment focuses on helping individuals gain adaptive and life skills (Cleveland Clinic, 2023). When received early and continuously, the intervention can lead to improved functioning, which allows the individual to thrive (Huizen, 2020).

Treatment plans include:

Medications that can help with conditions that are related to or happen alongside intellectual disability. They do not treat the disability itself but can help ease the effects of some of the symptoms.

Education support and interventions: help with changes to educational programs and structure, such as Individualized Education Plans, which create a custom educational plan and expectations.

Behavioral support and interventions: help with the acquisition of adaptive behaviors and related skills.

Vocational training: helps with the acquisition of work-related skills.

Family education: help family members as well as loved ones of the individuals with intellectual disability learn more about the disability and how to support that individual.

Prevention

Although the exact cause of intellectual disabilities is unknown, it is possible to reduce the child’s risk of developing it during pregnancy or the early stages of life (Cleveland Clinic, 2023). To prevent or reduce the risk, pregnant mothers are advised to follow their healthcare provider’s recommendations about taking medications during pregnancy and getting all the vaccinations (Cleveland Clinic, 2023). Limiting exposure to alcohol and substances such as tobacco and environmental toxins like lead can also be beneficial. Finally, it is important for one to talk to their provider about preconception genetic counselling, as having a family history of conditions that cause intellectual disabilities can increase the risk (Cleveland Clinic, 2023).

Intellectual disabilities and Epilepsy

Research highlights that epilepsy is significantly more prevalent among individuals with intellectual disabilities (ID) compared to the general population (McGrother et al., 2006).  McGrother et al. (2006) conducted a population-based study and reported an epilepsy prevalence of 26% among adults with intellectual disabilities. The study highlighted a significant relationship between epilepsy and various physical and behavioral challenges, including difficulties with mobility, daily living skills, and mood regulation, found in people with intellectual disabilities.

Notably, around 68% of individuals with both epilepsy and intellectual disabilities continued to experience seizures even though they were on anti-epileptic medication. This highlights the complexity of managing epilepsy in individuals with ID. This highlights the need for personalized treatment plans that consider the individual’s cognitive and behavioral profile. Additionally, healthcare providers must be vigilant about the potential side effects of medications, which may further affect cognitive functions and behavior.

Similarly, a systematic review by Robertson et al. (2015) analyzed forty-six studies and found that approximately 22.2% of people with ID have epilepsy, whereas the prevalence in the general population is around 1%. The study also noted that the prevalence of epilepsy increases with the severity of intellectual disability.

Conclusion

Understanding the relationship between intellectual disabilities and epilepsy is important for providing better care and support to individuals affected by both conditions. Epilepsy is more common in people with intellectual disabilities than in the general population, and managing both can present unique challenges. However, with the right treatment plans, including medication, educational support, and behavioral interventions, individuals can lead fulfilling lives. Awareness and early intervention can make a significant difference in improving their quality of life, and by supporting families and caregivers, we can ensure a brighter future for those navigating these complex conditions. It is important for us to continue advocating for better resources, support systems, and awareness for people with intellectual disabilities and epilepsy, as they deserve the same opportunities to thrive as anyone else.

References

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). American Psychiatric Publishing.

Cleveland Clinic. (2023). Intellectual disability (ID). Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/25015-intellectual-disability-id

Epilepsy Foundation (2013). Children with Intellectual Disabilities Epilepsy Foundation. https://www.epilepsy.com/parents-and-caregivers/talking-kids-about-epilepsy/intellectual-disabilities

Huizen, J. (2020, December 2). What to know about intellectual disability. Medical News Today. https://www.medicalnewstoday.com/articles/intellectual-disability

McGrother, C. W., Bhaumik, S., Thorp, C. F., Hauck, A., Branford, D., & Watson, J. M. (2006). Epilepsy in adults with intellectual disabilities: Prevalence, associations, and service implications. Seizure, 15(7), 376–386. https://doi.org/10.1016/j.seizure.2006.04.002

Robertson, J., Hatton, C., Emerson, E., & Baines, S. (2015). Prevalence of epilepsy among people with intellectual disabilities: A systematic review. Journal of Intellectual Disability Research, 59(2), 89–102. https://pubmed.ncbi.nlm.nih.gov/26076844