Changing the stigma of autism during Autism Awareness Month
By Rachel Hawkins, NDG Staff Writer
“It was the only time in my life that I completely lost control in public, fell to my knees and wept,” Whitney Ellenby said.
Just the word alone may make certain people feel uncomfortable or have strong opinions based on the stigma that surrounds it in our everyday culture. It’s a topic in which many people may not understand or they simply try to avoid, but one mother is trying to change that.
Author, advocate, and mother, Whitney Ellenby new book Autism Uncensored: Pulling Back the Curtain will reveal the struggles and triumphs of raising her autistic son.
“It was devastating to learn about Zack’s Autism at 19 months old, partly because I was completely unprepared,” Ellenby said. “I had assumed when he behaved oddly or missed milestones that he was merely developmentally delayed, not that he had a permanent, incurable brain disorder.
“In those early years the highs came from Zack’s growing and demonstrative affection for me, he went from having a flat, humorless affect to grabbing me and tackling me like a little linebacker,” Ellenby said. “His first words were exhilarating, as was an episode I recount in the book where he somewhat forcibly fed his baby sister brownies, a cool and deceitful way of feeding himself,”
“But the lows were profound as he approached age 5 with episodes of fecal smearing, insomnia and frequent public meltdowns that left me feeling humiliated and helpless,” Ellenby said. “There was also this pervasive sense since so much about Autism is unknown and incurable that he might still be having tantrums at age 18, a terrifying thought, so there was no light at the end of a very dark tunnel,”
Ellenby was inspired to write the book from the moment of that first real-world exposure where her son conquered his fears.
“I became an ally with Autism rather than an opponent, respecting this force of nature, harnessing it and redirecting its energy in a positive direction. I don’t believe I’ve ever experienced anything in my entire time of parenting more exhilarating than the success born of watching Zack overcome his fears, adjust to an indoor theater show where I forced him to enter and remain, and come out the other side singing, bouncing, enjoying the show, fearless. That set off a series of real-world exposures initiated by me to airplanes, the Baltimore Aquarium, movie theaters, the Metro system, all places he previously feared and which, time-after-time, he conquered.
For every 68 births, one child is diagnosed with autism. Seventy million individuals have autism worldwide.
Over 10 years ago, after watching Zack succeed in conquering his fears, Ellenby realized that something fundamental to the autism community was missing, a judgment-free “room of our own” to recreate, for parents, siblings and children of all ages with ASD, and that’s when she decided to create Autism Ambassadors.
“We needed to be free from the glare of the general public and most importantly, we needed exclusivity,” Ellenby said. So I always rent out entire venues such as inflatables gyms, trampoline parks, movie theaters, indoor or outdoor pools and splash parks, exclusively for our own use, no general public allowed. The crowds, chaos, and volume can be overwhelming for our kids, the sometimes judgmental look parents receive when their autistic child yelps or bounces, is itself inhibiting parents from openly enjoying the places everyone else gets to go.
“I wanted a place where our kids could play on their own terms,” Ellenby said. Bounce, flap, yelp, strip down, it’s all good! It was crucial to me that parents and siblings be in the company of others who “get it,” they don’t have to explain, chase or apologize.
Today Zack is doing well at 17 years old. He navigates his community and the world fearlessly and competently, goes to rock concerts, theater, and on an airplane. All the places he desperately feared when he was younger. There are no more meltdowns, the world has become a far more predictable place and Zack is a very well-adjusted, and a truly joyful young man with Autism. His language never really expanded so he remains minimally verbal, still flaps, bounces and gallops everywhere he goes and it’s perfectly fine. Fantastic even in the eyes of his family.
Since Zack’s diagnosis, Ellenby went from being someone whose identity and self-confidence was swiped by the early diagnosis to someone who passionately advocates for persons with Autism.
She runs exclusive recreational events for persons of all ages with autism in her community, which has given her the greatest sense of purpose she’s ever known.
“I always say that I’m never more relaxed and at home, than when surrounded by my friends with Autism, they bring out the best in me,” Ellenby said.
Zack has changed from a child who was virtually confined to the house because of his debilitating phobias and his life constricted, to a confident young man who looks forward to new experiences and participating in the Special Olympics.
“There is no right way to parent any child with autism, apart from providing unconditional love and support for who they are and the challenges they face,” Ellenby said. Many people are objecting to my unorthodox methods of physical restraint that I used when Zack was age five to help him overcome his fears and I can’t help but wonder whether there would be the same outrage if he was neurotypical? I don’t believe in infantilizing persons with disabilities, or talking about them in their presence as if they are not absorbing what’s being said about them. I do believe in being frank and honest with them about their disability, building up their self-esteem, and capitalizing on all the things they can do without getting mired in the limits imposed by their disability,”
“I believe Autism cuts across all races and ethnicities equally, though I can’t say for sure whether the impact is the same,” Ellenby said. The lessons are the same, regardless of race. Trust your gut regarding interventions, understand that money doesn’t necessarily affect the outcome, do your best to give your child real-world exposure and inclusion in his community. In my experience, the best intervention for Zack happened only when I took matters into my own hands, had the courage to disclose his disability openly and in public, and stopped apologizing for his Autism.”
There are many ways communities can get involve and support those who are affected by autism. Services and providers like restaurants, gyms, and theaters can consider designating services for one day each month specifically for persons with Autism. While our society has access to many “sensory-friendly” opportunities, it’s still not enough and nowhere near the access granted for neurotypical folks.
Another way communities can show support to those affected is by observing the situation before acting upon it.
“Within the community, if you see a parent struggling with a child having a massive meltdown, wait a minute before reacting,” Ellenby said. It’s natural to feel startled or annoyed but take a moment. Given our epidemic numbers, to consider that you might be witnessing an autistic meltdown and the parent is in genuine pain. If you feel able, ask the parent gently if you can help, but don’t judge, don’t glare, don’t make them feel unwelcome.
“In my opinion, there is no substitute for real-world exposure, so get your kids out into the world early and often,” Ellenby said. I want the biggest takeaway to be shed the shame over the purportedly embarrassing behaviors your child exhibits, get her/him out into the world often and don’t be afraid to identify your child as having autism. There’s no room or reason for shame, don’t let others’ opinions keep you and your kids locked away at home, their lives are too precious. So is yours.