Another birthday came and went with less developmental milestones achieved than I had hoped. It became apparent I needed to schedule my daughter for an evaluation. I stared at her thinking, “if she has autism I am the perfect mother for her.”
During college, I worked for the Autistic Children’s Program in public schools as a teacher’s assistant. I was told it was a job I would love or hate. There was no in between. It was hard work, but I grew to enjoy it. Our staff stayed busy, teaching in the spare moments we found ensuring our students were not hurting themselves or others. No two days were ever the same.
On any given day, I would carefully monitor a student known to sneak mulch from the playground to devour as a midday snack, guard a student that turned violent when the class schedule was modified or evacuate the class when a student’s behavior escalated.
We had our good and bad days, and I grew deeply connected to our students who had colorful personalities and a desire to be accepted.
Autism, or autism spectrum disorder (ASD), is a neurodevelopmental disorder characterized by repetitive behaviors, impaired social skills and the inability to communicate effectively. The Centers for Disease Control and Prevention estimates one in 42 boys and one in 189 girls have ASD in the United States. Other medical or mental health issues often accompany it.
Girls are often harder to diagnose because they learn to mimic social behavior, making their symptoms difficult to detect.
By the time she was 4, I noticed how much my daughter struggled with things that seemed to come easily for other children. Using fully formed sentences, remembering her numbers and colors, and change — any slight transition — was a challenge for her. As a playful and affectionate child who twirls, dances and sings Disney songs all day, it was hard to understand why she grew so frustrated during social interactions with other children.
I was hopeful as she began the assessment process. In my heart, I felt I would be at peace with any outcome because ASD was familiar to me. Yet, I was emotionally unprepared for her official diagnosis. Her behavior was atypical. My daughter was officially on the Autism spectrum and I found myself wondering how I could protect her in ways I have not been able to protect myself.
There are so many stories I could share. In middle school, I was sexually harassed in school and while attending church youth group activities. By ninth grade, I suffered regular panic attacks in school out of sheer anxiety. In senior year, I stopped going to gym class after my teacher found regular opportunities to grope me. I still received a passing grade. I spent my late teens and 20s in and out of abusive relationships. At 21, I divorced my husband after he raped me. I never felt safe or protected in the world. Not as a girl and not as a woman.
When your child is diagnosed with ASD, you are issued a book of special education rights. You learn that they have the right to receive disability services and special education. You learn that they have the right to have consensual sex, romantic relationships and bear children. You learn that they have the right — just as anyone else — to be protected from sexual exploitation. Then you realize it is harder.
I cried when my daughter was diagnosed, not because she has ASD, but because I was overwhelmed by the thought of how to protect her from the threat of sexual violence.
Children with intellectual disabilities are 4.6 times more likely to experience sexual abuse and 3.6 times more likely to be physically abused. They are more vulnerable than non-disabled children because they are dependent on others to provide their basic care and often unable to verbally communicate the type of abuse is that is occurring to them.
As my daughter approaches the age for school enrollment, a new level of anxiety begins. Can I place her in a program where she will be safe? Will she be targeted? Will she be able to tell me if she is experiencing abuse? In 2015, a 7-year-old student with autism was forced into sex acts by two classmates at Addison Mizner Elementary in Boca Raton, Fla. Defense attorneys argued the victim was partially at fault because he did not report the assault to his parents “soon enough.”
In August, a paraprofessional that worked alongside teachers at Bronx Latin Middle School was arrested for raping a 12-year-old student with autism.
In the county I live in, three staff members have been arrested for physically assaulting children with autism on special education school buses in the past two months. What hope do parents of disabled children have if we cannot even be assured our children will be transported to and from school safely?
These reports are horrifying enough for me to dream of removing my sweet daughter from society and taking her someplace where she can be safe from harm — but that place that does not exist. She is deserving of an education and a social life, just like her non-disabled peers. Despite my fears, her diagnosis of autism has not changed my desire to afford her a life that is bigger and bolder than mine.
I am educating her about her body parts, personal boundaries and appropriate touching. As I continue to educate myself about prevention, I will remain vigilant about her surroundings and work with her to improve her verbal communication skills.