My Child With Autism Doesn’t Need or Want Your PityJanuary 1, 1970 2020-12-13 15:00
My Child With Autism Doesn’t Need or Want Your Pity
My Child With Autism Doesn’t Need or Want Your Pity
After attending an informational session for families about autism, Asperger’s and the difficulties of navigating being disabled and supporting your “differently wired” family member (their term, not ours), my husband, my older daughter and I came home to our youngest family member full of sympathy and sadness. We thought we were ready to fully embrace her with unconditional love.
My older daughter immediately picked up her little sister, held her like a baby and said in a baby voice, “Sissy is here for you, baby girl. I will always be here and you are so perfect.”
My 6-year-old responded in a baby voice, echoing her big sis, and said, “Waaa, I want to use your cell phone and can I have some of your candy?”
Big sis, full of sympathy for her “special-needs” sister, gave her some of her hidden stash of candy, from a jar labeled “My Candy. DO NOT TOUCH!”
Our baby girl didn’t stop there.
“Dada,” she said, still in baby talk, “I need to sleep with all my babies tonight.” Because she has about 30 dolls she calls “her babies,” the rule is she can only sleep with five dolls a night. She knows these are the rules. But because my husband was still caught up in “sympathy” for our “special needs” child, he reluctantly allowed her to break the only-five-babies-in-the-bed rule.
Within an hour, our wily youngest daughter had obtained her sister’s secret candy and a bed full of all her babies, had talked herself into wearing her swimsuit to bed and was quickly on her way to full Dawson Household Domination. She was only stopped by her greed, when she asked her dad to put the Playstation in her bedroom, with a new television, so she could play her favorite Marvel video game whenever she wanted.
Our Brilliant, Perceptive, Neurodiverse Daughter Does It Her Way
We quickly realized that our neurodiverse family member was playing us all. She didn’t know why all of sudden we were treating her differently, as someone who should be pitied and needed special treatment, but she saw an opportunity and seized her moment. She was the same person before we went to the workshop—we were the ones who were different.
Honestly, I can’t remember much of what we learned at that “autism for families workshop,” but I know my daughter taught us the most important lesson. There is nothing to be pitied about my daughter. She is not weak. She is brilliant, perceptive and fully capable of seizing opportunities to reach her goals. Before we went to this family workshop, we already knew all about her strong-willed personality and her get-what-she-wants-ness.
All her life, my neurodiverse daughter has been functioning in our neurotypical world. She has already developed an inner resilience to make sure she is successful. She has overcome more obstacles than almost anyone in our family. And she did it all before she lost her baby teeth.
Here’s How Our Daughter Taught Us Who She Really Is
- Communication: She was largely non-verbal until she was 4, yet, she figured out how to communicate, clearly, with us. We knew her favorite toys, what foods she liked and didn’t like and even her sensory preferences. Some of the communication was crying, but the majority of the communication was figuring out how to communicate with facial expressions, some signing (not formally taught, she taught us what her signs meant) and by studying the verbal communications of her family, classmates and obsessively watching these annoying “Come Play With Me” videos of kids playing with dolls in different social scenarios.
- Sensory Needs: My younger daughter has both autism and Sensory Processing Disorder (SPD), which means she responds strongly to different textures and bright lights. Her body needs a certain amount of sensory input to regulate. We were lucky to get an occupational therapist who was fantastic in helping us navigate what SPD was, but our daughter was the one who let us know what her specific sensory needs were. She turned off lights, picked out her own clothes (which were largely all made from the same fabric) and protested if we offered her others. The occupational therapist suggested tools for sensory input, but our daughter let us know what worked for her. For example, we were told the sensory table full of pasta noodles would be great, but after the third time she spilled the pasta on the floor and tried to throw it in the garbage, we realized that was not one of her preferred sensory tools.
- Academic: Because she was largely non-verbal, almost all of our parental attention went towards speech and occupational therapy for her. We did read books, but we weren’t actively trying to push the “pre-reading” skills that we had encouraged for our neurotypical daughter. I think our younger one realized that academics were important, and that she was going to have to navigate academic knowledge on her own. And she did. Mostly by herself, and sometimes with help from her Nana, who never saw anything lacking in her younger granddaughter’s ability to function.
Ironically, the most important lesson from our “autism family workshop” was that no one could teach us about our younger daughter, but our daughter. Every child, including every child on the autism spectrum, is the best teacher of who they are. Take the lesson my family learned: Don’t pity or underestimate them. Otherwise, you will end up losing your candy, with 30 dolls in the bed and a 6-year-old dictator of bedtime. If you pity children with autism, know you will do it at your own risk.