We welcome Haley Miller, a member of our Caribou chapter, as she tells her story.
“Born sleeping? How does that work?” I asked my mom. She sat across from me, relaxed in a recliner while I picked at her brain for more memories.
Before her focus could fade, she repeated herself, “I don’t know, you came out asleep.”
That’s odd. I thought.
I knew the amount of information my parents had on my life growing up with autism was abundant but had not realized how early the symptoms started.
As I sat down with my mom on a bitter winter morning, she recalled all of these stories to my husband and I. I had no recollection of any of the memories she told me. The few I could jot down messily would not jog any part of my younger self.
Mom said I never cried. I could picture her in my head; a young woman with an auburn pixie cut setting a timer to ensure that I was fed when I was supposed to be. I never wailed to signal that I was in need of anything.
My parents would set me down once I was able to sit upright. I would stay in that one spot. If I was put in the center of the living room, I would be idle. I would lift my palm up and inspect the fine lines between the baby fat then flip over to the back. I would wiggle my fingers and watch how they rippled. It was unusual for a toddler to not want to explore their surroundings. It was a whole expanse of an unexplored area and I would sit still like I had no other choice. My parents never had to put anything up since I remained so calm in my environment.
This started to become alarming when I would have play dates with my cousin, a close friend. Mom noticed the difference between the two of us. My cousin would be a small spitfire, willing to get their hands dirty and want to journey through every inch of the home. Meanwhile, I would sit and stare.
My parents tried to go to my pediatrician with the problems but their response was along the lines of, “She’s meeting all of her milestones. You don’t need to be worried.”
Around the same time, they had a speech pathologist tell them, “Don’t be surprised if she doesn’t put sentences together.”
It was a contrast of information and where to put their trust. At their wits end of what to do, my mom got her next idea from her place of work. As she worked in Bangor at a developmental preschool, she discovered a lot of the young children with autism had close similarities to her own daughter. She brought the idea to my dad and the two went to the one person they knew that could give them a solid answer.
Their psychology professor was a willing and qualified gentleman to look further into the issue. He rarely tossed out the autistic diagnoses making it more concrete if that was the final conclusion.
At age three, I toddled around the room while the three sat back and discussed the situation. I walked on my toes, would jump and land as hard as I could, and the oddest thing my mom had told me was my fascination with wanting to lick a television screen. Her assumption as the older screens would sometimes shock so the jolt would cause stimulation.
My small self glanced up at an unexpecting nativity scene near a wood stove. Not caring about the danger, or even realizing the consequences, I lifted my arm up to grab at one of the pieces.
“Careful, that’s really hot.” The professor worried.
I did not respond but leaned my arm full on the wood stove. Skin sizzled like meat to a griddle and I was only focused on the porcelain figure of a baby Jesus in my other hand. My mom ripped my arm away with a gentle grip.
A burn appeared up on my arm and I was completely unbothered.
After the burn situation had been handled, the professor had come to his final thought that this was autism. Symptoms included, it was shocking for my parents to hear the intellect of a three-year-old. For example, I tested ten years old in block design and I had a high IQ of 141.
My mom cried, seeing that this life that was expected was not what it was going to be. She went through everything in the future: weddings, a job, going out on my own into the world, but the professor reassured both of my parents.
“Kids like Haley are the ones that slip under the radar.”
This referred to how high functioning I was. People with high functioning autism can manage but they still internally feel the overstimulation and have to adjust to a world not made for them.
My father always told me that maybe autism was the next evolution of the brain and I was ahead of everyone else. My mom told me it was a gift to be cherished, that I was part of a small statistic of ‘cool kids’.
The positive encouragement from my parents brought around early intervention. This included a long list of Occupational Therapy, Physical Therapy, Speech, a developmental preschool, community integration workers, case management, and more.
“I think I’ve come a long way,” I said, clicking and unclicking my pen against one of the many notebooks I owned.
My husband said, “You still walk on your toes.”
I laughed, only because it was true. I still do some of the traits my mom had discussed with me. I can confidently say I no longer lick television screens or attempt to scale wood stoves to grab a baby Jesus from a nativity scene. Walking on my toes, hand flapping, lack of eye contact, and obvious processing can still be some external traits I do, but nobody could ever understand the internal effect it has on me.
Autism never really goes away but my management of it helps me blend in. I was once told that I ‘looked too normal’ to have autism. I always counter that with, “I don’t think anybody out there is really ‘normal’.”