Does anyone remember the Oprah episode years ago where she interviewed high-functioning children diagnosed with autism and parents? The episode was aired on April 5, 2007. The extreme look of concern and compassion on Oprah’s face and the random faces in the crowd was interesting to me. It made me wonder why the media did not cover or expose the most severe children or adults on the autism spectrum and chose only the moderate ones to write about and expose. It became quite popular in the early 2000s to jump on the autism compassion bandwagon.
Even an autism mom’s blue pumpkin campaign during Halloween about 5 years ago went viral. It suddenly became popular to be socially aware of the autistic. After all, it was a popular holiday: Halloween. It was cool. It meant people were compassionate if they had any sort of knowledge of autism, whether they had experienced it up close and personal or not.
Why even Home Depot started selling the “autism blue” light bulbs during April, the newly dubbed national month of Autism Awareness. I bought one. I was not sure why I did that. I had always supported autism awareness; I didn’t need a blue light bulb to advertise that, or to advertise that I might be an autism mom. I did not need a blue light bulb to remind me of the 24/7 care needed for a person on the lower-functioning end of the autism spectrum.
I did not need any reminders that I gave up a real estate career, deprived myself of self-care for 20 years, endured 20 years of pure sleep deprivation and many nights of tears, knowing my nonverbal child would never have a career, a girlfriend, children or normal growing pains and joys.
I did not need a reminder that more than 80% of marriages involving children on the spectrum result in divorce, per the CDC statistics. Mine was one such casualty.
The next time a stranger attempts to give an autism mom or caregiver advice or mentions that they watched the Oprah special on autism so they” know” about it. I may ask such a person if they have ever had to clean up cat litter and poop thrown all over the bathroom and wet litter stuck on the ceiling because the autistic child thought it was a sandbox. And if the person asked why the child was left alone, I may tell them that I was right there in the bathroom with the child and was trying to kill 2 birds with one stone and go to the potty while also watching the child and the entire episode took less than a minute.
I might ask them if they had ever tried to feed the child and due to sensory issues, they chewed up all the apples and then spit them out on the table and then tried to consume the pile and what would their reaction be? I wondered if they had ever chased after the child just to feed them gummy bears one at a time because that was all the food they would eat for months and they needed protein. Perhaps the mom was drained from the snide comments from the neighbors, the school and even the pediatrician that she was slowly starving her child to death. I wonder how they would handle that situation.
I also might ask them if they had ever chased after a child full speed who had escaped out the only non-bolted window, climbed over the back fence and was running through the neighborhood barefooted and in pull ups during a 50 degree chilly night? I might ask them if they have ever woken up after a 2-hour sleep and checked on the child and discovered he had removed his pull up and had mixed the poop with green play dough and had literally thrown the green feces on the ceiling fan and ceiling and rubbed it into the cracks of his little TV and VCR. I might ask them if they had ever had that sh#t hit the fan and how they would respond.
These are the autism tales that the media does not want to show or share. Why? Because it is ugly. It is not cute. Please understand and accept all families who are dealing with a person on the autism spectrum, high or low-functioning because they are all God’s children and their caretakers are doing the best they, I can promise you that!
This blog, an ode to autism, is dedicated to my late friend and fellow autism mom, Jan L. Privette. RIP friend. You are now free.
