Marie’s Story. She is 36.
It started with the virus, when Leslie was three. It had a way of triggering it. She and her dad both got the flu. Viruses have a way of unlocking dormant genes. But I’m not a doctor, so I don’t know.
But that’s when it all changed.
She started to regress. She stopped her potty training. She started acting out. She started kicking and biting. The kid who was seemingly well-adjusted was gone overnight. She had become a different child in just a couple of months. It was fast.
That was the start of the meltdowns.
My marriage fell apart. Her dad was becoming a person he wasn’t when we met, he was dealing with his own health issues, and all of these events toppled upon one another—it was the beginning of the end.
Daycares wouldn’t take her. I couldn’t leave her with any family or friends for an extended period of time. It made it hard to hold down a job. I felt helpless. I just didn’t know how to help my kid. I really didn’t know what to do, and I had very few resources after the divorce to figure it all out. I had to move into my parents’ for a year. But they became exhausted.
I was able to get a job at a local daycare center. They were great, and I could take Leslie to work with me. There were other kids there for her to play with, and she still had some meltdowns; but there were other staff members who could help me. I wasn’t alone.
And then she started school.
The first few years were tough. She’d run out, she’d kick and scream at her teachers, and I was getting calls every other day. I’d cringe when I’d hear the phone ring. I knew it was them calling about Leslie. But despite her behavior, she is brilliant and was placed in the gifted and talented program.
When she was in that program, that’s when she got bullied. All of those kids are so smart; they know how to get away with it. But I caught one of the kids bullying her one day with my own two eyes. I couldn’t believe it. But then there were the parents of those kids. . .I, I never thought I’d get upset saying this. . .it just seemed like all of the kids were picking on her. . .the adults would just roll their eyes. There was no control. The other kids and their parents stayed away from us. They’d whisper and look in horror. We were rejected by all of the others; that’s, that’s how it felt. You know that song from Dumbo, “Baby Mine”? I used to sing it to Leslie to ease the pain. . .to ease my pain. I don’t think she ever knew the real meaning behind the song, but. . .but for me, I could relate.
They eventually kicked her out of the program. The teacher said Leslie was too stressful for her, and she didn’t belong. Leslie’s behavior was awful, I get it, but that teacher just wasn’t willing to adjust or willing to reach her. Isn’t that a teacher’s job?
She kept a journal on Leslie. Everything she did—her meltdowns. How did the teacher even have time? She didn’t do it to be helpful; she did it to prove a point to me that my child was out of control. That wasn’t helpful.
We were referred to Ball State counseling. We were assigned a doctoral student. He was nice, but clearly still learning. I shared the teacher’s journal with him, but after hours and days of observing Leslie he determined there was nothing wrong.
Her pediatrician referred us to Riley. She felt that Leslie had been sexually abused. She wanted an exam. I took her to Riley and had to put my seven-year-old daughter through all of that—when I knew she hadn’t been abused—for them to tell me that she hadn’t. That’s when the doctors determined that we might be dealing with autism.
A few months later, as Leslie entered the second grade, she was finally diagnosed with Asperger’s.
There’s a relief in knowing; all of those years of not knowing, we finally had an answer. The doctors wanted to start medication immediately. I refused. To this day Leslie doesn’t take medication for her Asperger’s.
She’s adjusted well over time. We’ve still not told the school system and don’t plan to do so. Labels can create a divide. Not just with other students, but it puts a stigma on her that teachers can’t fail to recognize.
Now as a teenager, she has some kids who pick on her, but she doesn’t get it. It bounces off of her; she’s in her own universe. That’s good I guess. Very few things affect her, good or bad, but I want her to build deep relationships with people.
Most of her relationships are with inanimate objects. It’s taken me awhile to adjust to that. But that’s her world. She’s obsessed with anime, Japan, all of it. She doesn’t get social cues; and she’ll talk about a topic more than people would like to hear. But that’s part of it. Her Pokémons are an extension of her. She takes them to school, but the rule is that they have to stay in her locker.
She has friends. They’re all either Asperger’s or ADHD. They naturally gravitate toward each other. It’s just natural because they have so much in common. Like Leslie, most of the high functioning kids aren’t labeled through the school system.
I worry about her independence. She wants to go to college. She’s brilliant and would excel; I have no doubt she’d make a great scientist or artist. But she would go days without showering if I didn’t prompt her. She hoards. It’s part of it. She can’t let go of inanimate objects because of the relationships she develops with things. Her room is a mess, beyond just teenager messy. I worry what life will be like for her on her own, away at college.
She’s supposed to get her license in a year. That worries me. Not just as a parent, but it worries me to think about her behind the wheel of a car. But she wants to drive, and it’s a rite of passage, so I’m still considering the options.
I don’t know. I think she can make it, but we need to take it one day at a time. She might really surprise us all.
Let’s focus on the driving first.
Watch the reading of Marie’s story from the Facing Autism Event.
As told to J.R. Jamison by Marie.
J.R. Jamison is a co-founder of The Facing Project.
This story originally appeared in Facing Autism in Muncie, Indiana, a publication of The Facing Project that was organized by Interlock in Muncie, Indiana.