by Emily Rose Herzlin
– USA –
Katie’s eyes twinkle mischievously from across the classroom, sparkling from behind her red hair falling over her face. I wave at her, and her gaze never totally meets mine. She raises her hand and gestures back to me briefly, not sure whether I am a friend. Just as quickly, her attention goes elsewhere, back to her work.
Eleven-and-a-half year old Katie attends a rigorous school where the students are pushed harder than most of us have ever been pushed in our lives. Her curriculum consists of learning how to identify familiar people, make a snack, sort laundry, and rollerblade. Katie has autism, and is one of just a handful of girls at the school she attends that specializes in the disorder. The student body consists of just under thirty students, only four of whom are girls.
According to Autism Speaks, “Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.” Autism can also affect motor skills, making it physically difficult to perform certain tasks. The fastest growing developmental disability in the United States (with 1 in 150 children being diagnosed), autism affects four times more males than females – for reasons that are still unclear. There is no known cure for the disorder.
Males and females with autism both face many challenges, but girls with autism have the additional hurdle of being an under-researched population. Katie is the first female student to reach puberty at her school. Katie’s mom, Sara, spoke with me about her concerns. “There hasn’t been as much study out there [on girls with autism],” she tells me. “Katie is the school’s oldest girl student. The school’s individual work helps a great deal, but not enough is done in the field. That’s the numbers. I wish that Katie wasn’t the trailblazer for others.” Katie’s school is one of the leaders in the field, but for most parents of children with autism, the search for the school or facility that best suits their child is extremely difficult. According to Autism Speaks, “Autism receives less than 5% of the research funding of many less prevalent childhood diseases.”
Katie’s teachers spend hours every week refining Katie’s educational plan to ensure that she is learning functional skills. “Self care really becomes [one of] the most important thing to focus on at her age,” says Jessica, one of Katie’s teachers. “Two years ago she wasn’t toileting independently. She couldn’t brush her hair or her teeth independently. She’s come a long way.”
One lesson plan focuses on preparing Katie for menstruation by teaching her how to change her own sanitary napkin. This lesson plan was started when Katie was about nine years old, earlier than most girls tend to need to learn the skill because Katie’s rate of acquisition is so slow. Every step of the process was broken down into its simplest elements: putting the sanitary napkin in a purse, bringing the purse to the bathroom, sitting on the toilet, removing the paper from the back of the pad, etc. “We have her practice changing her sanitary napkin sometimes 8 times a day,” says Jessica. “It’s maybe a waste of resources but it’s too important not to.” Katie will most likely go on birth control to regulate her period and learn to use a calendar schedule with symbols to know which days of the month to use a sanitary napkin.
Sara worries that the physiological changes Katie will go through as she matures will be confusing and frightening for her. “I just don’t want her to be scared. My daughter who is typical was talking about her period, wondering if you can bleed to death. If this is typical, what about my atypical girl?”
Jessica addressed this by writing a social story with very simple language and pictures on every page to explain the basic elements of menstruation to Katie:
I’m getting older. I’m getting bigger. My body is changing.
Sometimes there will be blood coming from my body. This is okay. It will not hurt.
I will wear a sanitary napkin.
My stomach might be upset. I might be sad. If this happens I can go lie down…
With puberty comes new sensations in the body, and the topic of masturbation is one that is fraught with shades of gray. “As is almost everything in autism, you have to address it on a case-by-case basis,” says Jessica. “In general if you teach across the board that it’s never okay, you’re denying a basic human need. It’s important to be proactive about it. There are times I am going to feel this way – it’s okay but I have to be alone. Or even, This is okay to do just at night before bedtime.”
With adolescent boys with autism, teaching concrete rules about masturbation is in some ways easier because of the physiological differences. “An erection is obvious, you can say clearly ‘This is what it means and this is what you can do.’ With girls it’s not as obvious, physically. Which is true for typical girls, too,” says Jessica.
One of the most unnerving things for parents of girls with autism is the fear that their child is a target for molestation. “It’s a very vulnerable pool,” Sara explains, and her hope is that Katie will be able to learn that there’s a difference between a vaginal exam and being touched inappropriately. Sara, a uterine cancer survivor, knows the importance of regular gynecological exams, and hopes to be able to prepare her daughter for this aspect of her womanhood.
There are some kids with autism who know the difference between a doctor and someone who isn’t a doctor, and others need to be taught. They can learn to identify specific distinguishing things like a white coat or a red cross. “Katie’s going to need hard and fast rules for this,” says Jessica. “She’s an absolutely beautiful girl who is only going to get prettier, and this makes her more vulnerable.”
For parents, having a child with autism is a full-time job. “When you have a disabled kid, that takes over your life,” Sara explains. “I don’t have a job. People who were more dismissive of stay-at-home-moms are more serious when I tell them about Katie.”
“People ask me, would you ever want a non-autistic child instead of Katie?” Sara says assertively, “I want my Katie. The difficulty of autism is her [challenge]. She’s a joy: sweet, happy, affectionate. Our worries are about her safety.”
About the Author
Emily Herzlin is a writer living in New York City. She graduated from New York University with a degree in Dramatic Literature and Creative Writing and has been published in Sentient City Magazine and writes weekly for the One City Blog.
She is also a playwright, winner of the Young Playwrights Inc. National Playwrighting Competition for her one-act play “Assemblage.” Her writing is influenced by art, artists, psychology and spirituality. Emily has run drama and arts workshops in schools in NYC and Long Island, and is currently working as a teacher for autistic children.