Autism and Epilepsy

About the Author

Megan Richardson, age 25, lives with both epilepsy and autism. She has faced many ups and downs, but doesn’t let the challenges faced get in the way of living a life that is worth enjoying in her eyes. In Megan’s free time, she enjoys spending time with family and friends, photography, listening to country music, supporting first responders, and traveling through New England, especially to the White Mountain region.

Note: The information shared here about chronic health conditions is based on personal experience and should not be considered medical advice or a substitute for professional medical diagnosis or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

---

My name is Megan, I’m 25, and I live with both epilepsy and autism. When I was about six or seven months old, I went in for my routine childhood vaccinations. Later that same day, I experienced a serious medical emergency and went into cardiac arrest, and spent that next year in and out of Boston Children’s Hospital. (I want to be clear that my story is not meant to suggest that vaccines cause autism or epilepsy. My experience reflects the complexity of medical journeys, not a conclusion about vaccines.)

During my time at Boston Children’s, I went through many neurological tests where I had seizure-like symptoms and episodes. One day, a neurologist saw me experiencing an episode and it was determined that I had epilepsy and I was put on anti-seizure medication. I remained on that anticonvulsant for years without being under the care of a neurologist because I was doing well medically.

Just a month after I turned 16, I started having episodes that were unusual. My mom took me to my doctor where I was then referred to a neurologist at Tufts Children’s Hospital at Tufts Medical Center in Boston. In the meantime, while I was waiting for my appointment to come around, I went through the blood tests to check on my seizure medication levels.

The day arrived where I had to go into Boston at Tufts Children’s Hospital to see the neurologist. He was very thorough, but put an order in for an EEG before I left and to take home with me for about 48 hours. An EEG stands for electroencephalogram, which records brain activity using electrodes placed on the scalp. I went home and brought the test back two days later. After a couple of months, it was concluded that I was having seizures and was put on two more anticonvulsants.

A few years later, with many ups and downs with my epilepsy, taking many pills a day, still seeing the same neurologist almost a decade later, I’m grateful to be 3 ½ years seizure free.

Epilepsy is a common co-occurring condition with autism. Approximately 30% of people who live with epilepsy will be diagnosed with autism, vice versa for people who live with autism to be diagnosed with epilepsy.

All through my 13 years of being in my school district, I was on an Individualized Education Plan (IEP). It was in place for my epilepsy, despite it being controlled (until my sophomore year of high school), and my anxiety.

I would have to be reevaluated for my IEP every three years to continue to get the support and help that I needed. Every meeting my mom sat through, her thoughts of autism were in her mind, but the school district brushed it off and said I was barely on the spectrum. It wasn’t until a few years after I graduated high school that I decided to look into getting evaluated for Autism Spectrum Disorder (ASD).

When I came to the decision of wanting to get a neuropsych evaluation, I reached out to my Primary Care Physician about it, and he immediately put a referral in for me. A couple of weeks went by, and I had an appointment scheduled with a neuropsychologist.

After three appointments with my neuropsychologist and a long testing period, I got my official autism diagnosis. It wasn’t really much of a surprise for my family and me, but I was truly grateful and relieved that I received the diagnosis. I’m grateful for my PCP and my neuropsychologist for making sure I got evaluated and got the answers I was looking for.

Now that I have had the autism diagnosis for a little over a year, I understand why I have certain routines and do certain things I do. I’m personally someone who relies on structure, routine, and planning.

Despite the challenges I have faced, I wouldn’t change anything. I’m grateful for the support of my friends, family, friends of my family, and some first responders. I wouldn’t be where I am today without them.

Although there isn’t anything I personally wouldn’t change regarding my own personal journey with epilepsy and autism, there is one thing I personally would wish for. I wish there was support for epilepsy and autism together, not separate. I certainly know that I am not the only person who is diagnosed with autism and epilepsy, and it would be wonderful to see a support group of some sort that would benefit both diagnoses.