Here’s your friendly reminder that autism and seizures sometimes go hand in hand. Not always, but sometimes it does.
Had an ambulatory EEG this past week, and I was very annoyed at it. I thought it wouldn’t show anything, and it wasn’t worth the sensory nightmare for three days. Not really something I was excited about, but I pushed through it – trying to figure out ways to keep my sensory system regulated. My weighted blanket was a lifesaver for this one.
I haven’t been feeling very well, but shrugged it off because I have things to do. I figured since I was taking my seizure medication, I should be good. Right?
And then yesterday, we got a call from the neurology office.
Turns out it was abnormal – and I also had a 20 minute episode. They want me to come in to see the doctor, so they can discuss all of the results with me.
I guess maybe that explains why I’ve been so disoriented and tired lately. I’ve been a lot more overwhelmed and dysregulated – and it shows.
Sometimes our “behaviors” are actually because of medical reasons. It can be hard to explain how we’re feeling, and it can also be hard to realize that something is wrong too.
Professionals don’t always realize this, and push families to “fix” the behaviors – instead of taking the time to rule out health issues.
- A kid hitting their head? Could be migraines, post-seizure, an ear infection – or maybe even flashbacks from trauma.
- Toileting troubles or accidents? Urinary tract infections, incontinence medical conditions, and GI problems can all play a role in it. Not to mention interoception!
- Not paying attention or daydreaming? Sometimes that’s actually an ‘absence’ seizure.
And when it comes to families trying their best to figure out what’s happening? The system is complicated.
It can be hard finding specialists who understand autism, getting insurance to cover it, and doctors that take your concerns seriously. Parents have to deal with gaslighting, accusations of overreacting, and more.
And when you’re autistic yourself?
They take you even less seriously, especially when we have trouble explaining how we feel and what’s wrong. We’re seen as “unreliable narrators” or incompetent of understanding our own bodies and brains.
The medical field definitely has some work to do.
Just Keep Stimming! 
I’m looking at that last bit, “And when you’re autistic yourself? They take you even less seriously, …”, and thinking it is definitely in the flavor of “guilty till proven innocent”; it is very much, “Stupid until proven not.” And I am beyond weary of it. Especially weary of the profound arrogance of the, “That person who lives every day, every hour, every minute, all year every year, experiencing their life and their state of being doesn’t know, can not know, their body and their life, but I the momentary observer who has expensive letters behind my name, by the very definition of my existence, know everything about them and their lives that there will ever be to know.”, attitude and its resulting actions and inactions. I remember many decades back during my childhood when a physician told my mother to her face, “You can’t know your child’s norms, you are only the mother.” WHAT!?!?!? And given my mother was a health care provider herself it was light years beyond the pale for the physician to treat her that way.
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