By: Natalie L. Boehm, MBA
Living with epilepsy is challenging for any individual. Other conditions can challenge someone battling epilepsy and cause additional complications. One of those conditions is autism.
According to the Center for Disease Control and Prevention, autism spectrum disorder is a developmental disability that can cause significant social, communication, and behavioral changes (CDC.gov, 2020). Some symptoms of autism are:
- Have trouble relating to others or not have an interest in other people at all
- Avoid eye contact and want to be alone
- Prefer not to be cuddled, or might cuddle only when they want to
- Have trouble expressing their needs using typical words or motions
- Repeat actions over and over again
- Have trouble adapting when a routine changes
Seeing the challenges that autism spectrum disorder brings to someone’s life, what is it like when epilepsy is also affecting them? Individuals who have both autism and epilepsy are likely to have learning difficulties, developmental delays, hyperactivity, and lower IQ.
Nearly half of autistic people have epilepsy, suggesting the two conditions share underlying biology (Wright, 2019). At this point, researchers have not discovered the direct link between autism and epilepsy. Many believe that they have overlapping genetic factors (MacGill and Hammond, 2019). Research is being conducted to see if genetics does play a factor.
Since individuals with autism and epilepsy tend to also have attention deficit hyperactivity disorder, anxiety and sleep disorders (Besag, 2017), treatment with multiple medications is common. However, mental health care beyond medication is also needed to cope with the stresses caused by these conditions.
Autism and epilepsy can cause a lot of stress to the affected individual and their family. For example, this combination of conditions may necessitate a parent having to quit a job to become the caregiver resulting in financial hardship and burnout. Not enough is done to help the caregivers of individuals affected by autism and epilepsy.
In researching this information there is one thing that was familiar to me and that is the lack of support for the patient and caregiver. I reviewed numerous articles where I could find plenty of statistics on how the two came together, how it is treated medically, what are the common symptoms, but I could not find anything on how to deal with the emotional and mental effects it has on the patient. I have explained in previous articles I have written how doctors did not help my parents when it came to any emotional or mental problems that occurred due to medication. It was just to give me my medication and deal with it. Seeing the complexities that can come from this shows the necessity of providing education and resources to patients and families. In establishing a care plan, many resources are needed to help the patient reach their goals in achieving the best health possible. I hope in time that the medical community will see the need to come together and use multiple resources to help patients live a happy and healthy life, especially when dealing with complex conditions.
Besag, FMC (2017). Epilepsy in patients with autism: links, risks, and treatment challenges. Neuropsychiatric Disease and Treatment, 14(1-10). Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5739118/
CDC (2020). What is Autism Spectrum Disorder? CDC.gov. Retrieved from: https://www.cdc.gov/ncbddd/autism/facts.html
MacGill M. and Hammond, N. (2019). Epilepsy and Autism: Is There a Link? Medical News Today. Retrieved from: https://www.medicalnewstoday.com/articles/260649 Wright, J. (2019). The Link Between Epilepsy and Autism, Explained. Spectrum. Retrieved from: https://www.spectrumnews.org/news/the-link-between-epilepsy-and-autism-explained/
Wright, J. (2019). The Link Between Epilepsy and Autism, Explained. Spectrum. Retrieved from: https://www.spectrumnews.org/news/the-link-between-epilepsy-and-autism-explained/