Girls with Autism Face the Challenges of Womanhood

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…

Jessica – explaining menstruation to Katie

The WIP

by Emily Rose Herzlin
USA

July 15, 2009

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.”

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PG

Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.