The Pink Side of the Spectrum – Our Unexpected Turn in Life
Navigating as an autism parent can be challenging as no two children on the spectrum are alike. Raising a girl on the spectrum can be especially challenging. Since girls account for much less of the total diagnoses, it’s much harder to find research studies or information exclusively about girls on the spectrum. Primarily viewed as a boy’s disorder, attributes unique to autistic girls oftentimes gets excluded, making the information non-gender specific, or lacking details relevant to females. This became even more apparent when our daughter reached puberty.
An Unexpected Turn
When our daughter, Leah, reached fourth grade, we were quite happy with the progress she had made. She had been placed in an inclusive mainstream classroom a few years prior, and her behavior had improved tremendously. She learned to model appropriate social interaction, and behaviors. Her fourth grade teacher had even requested to have Leah placed in her class the previous year! By far her best school year, her teacher helped facilitate friendships and began a “lunch bunch” program for her. A few girls in Leah’s class asked her to dance in the talent show with them, which led to having her very first birthday party. It was so promising that she developed friends and had a sense of belonging. In 5th grade, however, that all changed. When the onset of puberty came, we had no idea what we were about to face. Extremely challenging behaviors began to emerge, and our daughter became more and more unpredictable. Sadly, her friends stopped interacting with her. It was so disheartening to see her being separated from students and not enjoying school like she once had. Her progress had come to a sudden stop. Her sensory difficulties would easily intensify more than usual. Hormones had changed her day-to-day life dramatically.
A Memorable Meltdown
I wanted to share one of the most serious meltdowns that occurred last year. While at our primary care physician’s office to be checked for a possible ear infection, Leah had a severe sensory overload meltdown. Whether it was her sensitive ears being examined, the bright lights, or something else entirely, something was triggered that day that sent Leah into a state of panic. She ran out of the exam room, and started to engage in self injurious behavior. Her out-of-control behavior resulted in me being asked to get her psychiatrist on the phone. Once I reached her psychiatrist on my phone, the doctor spoke to her briefly.
Unfortunately, they were not able to do what the psychiatrist had suggested, which was to give her a sedative. I was then informed that if she didn’t leave their office immediately, they would have no choice but to call the police. Hearing that the police were going to be coming to intervene with my then 13-year-old daughter sent chills through me. If a group practice of medical professionals could not help her, what reassurance did I have that law enforcement would have any idea how to intervene with a girl with autism? This situation, I thought, could easily escalate things and spiral out of control. Staying as calm as I could, I had to de-escalate her enough to walk out to the car. Thankfully, talking with her and doing some deep breathing settled her enough to leave. Once she got into the car, I felt such a sense of relief! Never could I have imagined that a simple exam at her doctor’s office could potentially lead to such a frightening situation. We had to find her additional help and to avoid being put in that situation again.
It’s difficult to share moments like these. We now know, however, that girls with ASD can become violent during their teenage years. There can be numerous factors that play a role. Autism, anxiety, sensory processing disorder, and hormonal changes, are just a few. When combined, it’s hard to distinguish exactly what needs to be addressed. Finding the right treatment for these overlapping factors can be overwhelming.
We now had to find new ways to help our daughter, as her aggression began to worsen. Her coping skills and strategies were no longer effective. Frustration and anxiety would set in quickly, causing impulsive behaviors. Determined to find information, we started to search for ways to help her with these physical and hormonal changes. One of the few studies we came across was about the prevalence of premenstrual syndrome in autistic girls.1 It found that 92% of the females diagnosed with ASD had premenstrual disorder, compared to 11% of the control group. What caught our attention was the severe behavioral symptoms described in those girls with autism and PMS were anger, anxiety, being destructive and aggressive. This kind of behavior was exactly what we were seeing coincide with her hormonal changes. But we still were at a loss as to how to help her.
Thankfully, while attending the Penn State autism conference one summer, I met other parents raising girls with ASD. The extreme behaviors I described to them were exactly what they had experienced with their daughters. Taking the advice from one mother, we made an appointment with an adolescent specialist. Due to the severity of her behaviors, she was diagnosed with PMDD, premenstrual dysphoric disorder, the severe kind of premenstrual syndrome. It was suggested that a low dose birth control pill could help stabilize her fluctuating hormones, and would most likely reduce these behaviors. With self-injurious behaviors resurfacing, and aggression becoming worse, we decided to try this approach. Now, almost two years later, we have seen a marked improvement. This choice may not be right for everyone, but in our case her safety was our main concern.
Leah’s artistic abilities are a positive part of her life. Having received seven national art award grants, placing third in a state-wide art competition, and having her artwork exhibited at the Penn State autism conference, have made us very proud of her. We continue to see an improvement in her verbal communication, and for that we are grateful. She’s a typical teen when it comes to liking clothes, nail polish, and making her own jewelry. She now attends a school that can better support her needs. She has daily access to a squeeze machine there, similar to the one Temple Grandin designed. We’re appreciative of the progress she’s made while adjusting to so many changes.
Raising a daughter on the spectrum can take unexpected turns during adolescence. Stay hopeful and know that through your patience, dedication, and perseverance, you can have a positive impact on her future.
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1 The Journal of International Medical Research: Prevalence of Premenstrual Syndrome in Autism – by H Obaydi and BK Puri (2008)
Lori DeMonia works as a Behavioral Health TSS for the Chester County Intermediate Unit / Home & Community Services, and author to children’s books Leah’s Voice, and Love for Logan. She is the recipient of The Temple Grandin Outstanding Literary Work of the Year Award for her picture book, Leah’s Voice. She serves as a parent consultant with PEAC – The Pennsylvania Education for All Coalition, and also on the Walnut Street Theatre Education Advisory Committee.
This article was featured in Issue 47 – Motherhood – An Unconditional Love