Last fall, my daughter, Jess, started working as a behavioral tech with kids who have autism. She began sharing stories of how she empathized with her charges. Not pitied, not sympathized but truly empathized about stims, melt downs, preferred and non-preferred behaviors, difficulty socializing, etc. Her empathetic response led her to connect what she observed at work with her own personal history. She approached me on a January evening after work armed with articles, observations and connections.
“Mom, I think I have autism.”
“I think it is entirely possible. Would you like to be evaluated?
“Alright, let’s make 2020 the year that you get evaluated.”
I wasn’t surprised. I wasn’t dismayed. I was elated and energized. This could be a game changer for Jess, my beautiful, bright, empathetic, easily overwhelmed, and anxious daughter. Jess will tell you that after an academically successful high school experience marred by anxiety and serious depression, she dropped out of college twice. Attending class in person didn’t always work for her, living in a dorm surrounded by loud fellow students didn’t work for her, having a non-stop busy college schedule didn’t work for her.
Jess needs her own room, a place to recharge after socializing. She needs a garden in the quiet, fresh air. She needs a flexible academic schedule and understanding professors.
About 10-12 years ago, I looked into whether Jess had what was then called Asperger’s syndrome. She struggled to make social connections, hugging and snuggling were uncomfortable for her, and she was prone to meltdowns. I read about a half dozen books and asked for an evaluation by the school. In reading the books, I started highlighting in different colors: for Jess, for myself, for members of my family (more on this another time). She did not meet the educational criteria for autism and it felt like a dead end. Where do you go next when your child is perceptive, obviously bright, can be social but gets overwhelmed easily and struggles with seemingly simple tasks? I started using labels like difficult, anxious, and highly sensitive.
In January, we agreed that I could help by locating a doctor who evaluates adults and specifically, adult women. Often girls and women with autism master “masking” which is pretending to be normal and hiding that which makes them different. Over the years, Jess pushed herself to be social, to fit in, to be normal. In grade school, nearly every time I picked her up at Brownies, she was by herself crying. My answer was let’s not do Brownies. Her answer was to keep going back. While I admired her resolve, masking exhausted her which led to melt downs in elementary school and anxiety and depression beginning in middle school.
In a couple of weeks, Jess, will undergo an autism evaluation. She asked me for help filling out the pre-eval paperwork. I added contextual examples and brought out her elementary school assessment. She asked me to attend the evaluation so that I may provide childhood examples. I recommended she take the day off work. Autism or not, a two hour personal interview will be exhausting.
While an official diagnosis will be affirming for Jess as well as identify supports for future educational and professional endeavors, Jess is already on her journey. She has given herself permission to be different and to choose what works best for her. She is consistently more upbeat than I’ve ever seen her before. She plans to talk with her doctor about approaching her depression treatment differently given what she’s learned. I treat her differently given what’s she told me about herself. I reserve judgement, listen with empathy, share my observations and most of all, after years of pushing herself or me pushing her, I don’t push.
Blog aside: Jess and I have fascinating conversations about what we know now versus what we knew then: what she experienced as a kid and my experience as that “difficult” kid’s parent. Add to that her growing knowledge of autism and Applied Behavior Analysis therapy. I’d love to do a podcast with her sometime and share these conversations with you.