It might seem a little strange to some of you to hear someone say there is a dark side of autism. To most of the outside world, everything about autism is dark. That isn’t true at all. There are huge advantages and gifts of people on the spectrum that the neurotypical world could only dream about.
But there is a dark side and it’s heartbreaking to watch.
One of the main ingredients that define autism, is the difficulty in communication. For Remy, she doesn’t have enough words in her vocabulary to express herself or to convey her needs, wants and feelings. She also can only absorb so much verbal dialogue and process communication from other people.
When Remy was a baby and toddler, I used to say “I can’t wait until she can talk so she can tell me what hurts, how a seizure feels, when she has a headache, if she’s hungry, sad, frustrated” I waited patiently for that day that she would say “mommy, I feel dizzy, I think I am going to have a seizure”
What I didn’t realize is that even if she had the vocabulary and words, for her to recognize and pinpoint what was bothering her, then verbalize those feelings was almost impossible because all of that requires a level of self-awareness that is also very much impaired by autism.
So when a person has autism, the caregivers and loved ones are left to guess when something is wrong. Most of the time its just impossible to guess.
There are so many factors. Sleep, irritation from clothing, event that happened earlier in the day, medication, onset of illness, hunger, hurting, confused, frustration from lack of communication, the list goes on.
As parents of a child with ALL of these roadblocks, the only thing we can do is to watch for patterns. Did they eat something weird, did they want a different toy, did they try and express a need for one thing and you gave them something totally different. You look for patterns and while you can come to a conclusion about what is bothering them, it still doesn’t make sense to you.
Last night Remy had a psychotic episode. She has meltdowns quite frequently but last night it was at another level. She woke up scratching her leg. It looked like she was having an irritation from her clothing or something. She scratched so much that she started bleeding. I cleaned her up and put some cream on her and gave her some Benedryl.
I don’t know if the Benedryl had an adverse reaction but after that point, the night took a turn for the worst. Her screaming and thrashing and kicking just escalated and there was nothing we could do.
Zach stepped in and did all the things to calm her. He has this way of being able to take her down a hundred levels because he is very patient and calm. Me, not quite so much.
He sang to her, held her, rubbed her back, calmly talked to her. The entire time she kicked and scratched and screamed. Absolutely nothing worked.
If you were to witness it, you might have described it as if she had a monster inside her body that she couldn’t get out. She was violently throwing herself around in complete anxiety and panic. It was so bad that I considered giving her one of her seizure drugs called diastat which is just valume to get her to calm down. I didn’t but really considered it.
After about 2 hours of this at 2 am, she finally crashed and fell asleep.
This is the dark side of autism.
I wish I had a good ending to this story. I guess the good ending is that she fell asleep and woke up as if nothing ever happened. She woke up and asked me to curl her hair. She got dressed and ate oatmeal and went to school.
I wonder if she will think about last night. I wonder what she remembers about it. I wonder if she feels misunderstood. I wonder if she realizes that if we could take her place, we would in a heartbeat.
Maybe we will never know.
Thank you for listening to my thoughts today.
I am praying that today will be better.