January 31, 2017
Neurodiversity and Seizures
By Toni Boucher
Greg’s Story: I started having seizures when I turned 16. They really impacted school and it took a long time for my parents and the doctors to figure out what was going on. At first they just thought I was being defiant. I ended up hospitalized twice for angry and confusing outbursts before someone figured out what was going on.
Janice’s Story: I started having uncomfortable jolting sensations in my body at menopause. I had no idea that I could develop seizures in my 50’s but fortunately I have a good doctor who helped me get tested and life is much better now that they are under control. The biggest result- I’m not as tired anymore.
As an autistic, you may be experiencing negative effects from seizures and not even know it.
Research has long indicated that autistics are at greater risk of experiencing seizures than neurotypicals. But these uncontrollable electrical activities in the brain come in many forms and not all seizures are readily noticeable. Take 6 minutes to watch the following video which discusses 9 red flags for seizures.
Seizure Red Flags:
✔ Do you seem to be unable to perform tasks that you have been able to complete in the past?
✔ Do you have staring spells or do others people tell you you stare off sometimes?
✔ Do you frequently seem to forget conversations or events?
✔ Do you rub the area between your eye brows and have headaches or discomfort?
✔ Do you fall out of your chair or fall down for no known reason?
✔ Do you rage or get angry for unexplained reasons?
✔ Do you perform repetitive movements such as hand rubbing, chewing, swallowing, lip smacking, eye blinking or walking in circles without deliberately meaning to?
✔ Do you have twitching arms or legs?
✔ Do you accidentally wet yourself without a known medical reason?
(This screening checklist was adapted with permission from: Autism Translated: 5 Keys to Help You Understand & Connect With Teens and Adults on the Spectrum page 128 © 2016 by Toni Boucher with Special thanks to Bob Egelson who contributed to this screening).
Seizure Red Flags (Click to download PDF version of checklist).
If you know you have seizures or suspect based on the previous screening tool that seizures may be affecting you, here are some tips to help support you:
- Visit a neurologist who has experience working with autistic adults so that your unique communication style and sensory challenges will be respected.
- Before getting tested, talk with your doctor if being in enclosed spaces is an issue and explore your options. There are now open MRI machines that may be easier to tolerate than the traditional equipment.
- Let trusted people know you have seizures or suspect that you might have seizures and tell them specifically what they can do to help you. For example:
- “Please pay attention and point out if I have any incidents of blank staring, confusion, unexplained irritability or forgetfulness”.
- “Please be patient and repeat your message if I seem confused or don’t remember what you tell me”.
- “Please write down important information for me”.
- Make sure you keep yourself:
- well-rested and
- as stress- free as possible
- Manage any ongoing medical conditions that you have including:
- gastro-intestinal issues
- Get help and support for any mental health concerns including:
- eating disorders
- Keep a notebook or digital device with you to document the dates, times and circumstances surrounding any suspected seizure activity. Some seizures only take place at night or increase during hormonal shifts like menstruation or stressful times. This information can help your doctor provide you with the best treatment and it can help you recognize if there are any triggers that can let you know ahead of time that a seizure may be on the way.
- Give yourself adequate recovery time. Seizures can cause added anxiety, fatigue and confusion which takes it’s toll on an already neurodiverse body.
Do you experience seizures and have tips that might help other people manage them better? Share them with our community below.
Want to read more about Sensory Issues? Check out these articles: