Hey friends, this edited excerpt was published by The Washington Post, and sparked a mixture of support and outrage. Please know that I respect all opinions and anticipated anger, confusion, etc..from my unconventional tactics with my son. Out of respect for serious issues many have raised, please stay with me for this long explanation to place this event in context.
First, the article was redacted in ways that made it hard to provide a more complete history leading up the event. The issue with my son’s phobia was not merely the show, but various unknown indoor spaces including airplanes, hospitals, elevators…he was breaking into full-body tantrums everywhere. Thus by necessity, I had already become an expert in physical restraint of him to avoid danger, and had cultivated the ability to “speak to his fears” by using certain mantras I whispered to calm him.
Prior to this incident, as explained in my book, I had tried every less invasive alternative to help Zack overcome his fears – intensive therapy, rehearsals, photos, gradual exposure, all failed. Gradual exposure was especially pernicious because in his particular case, it ended up exposing him repeatedly to the same venue with explosive reactions that became so ingrained that simply driving down the street towards the venue triggered them. By the time I decided to do a single exposure, it was in the interest of overriding his fears –once- to reset his terrorized association, and stay put precisely so he could see the objective of the confrontation (Elmo) and thus understand the purpose. The only other possibility at that point was to medicate him to ease his intense anxiety and at age 5, I thought he was too young and that risk too great. That said, make no mistake, I knew I was taking a big emotional risk with Zack, but since he was already breaking into severe tantrums daily, was petrified of myriad places and increasingly unable to leave the house, I felt getting him over his fears was a risk worth taking.
There was no way to prepare the public ahead of time because the venue is a huge auditorium, and our struggle took place in the hallway leading to the show, thus we did not ruin the performance for anyone. We did create an unavoidable scene in the hall, but I was within my rights to ask — as a paying customer at a public venue seeking equal access for my son — for time to let me get the situation under control. Zack was not a danger to anyone there. I did not physically hurt him in any way but rather held him tightly so he could not self-injure.
No, going to an Elmo show is not a right; but equal access for children like my son is. And while I felt terrible about the discomfort posed to others, there is no right to be spared discomfort of screaming kids – ask anyone who’s endured a flight with a screaming baby or a toddler who drops down and gets forcibly dragged up by a parent. Believe me, I was not having fun, I was simply determined and in this instance, I put my son’s needs ahead of public discomfort for the cause of making history in his own life should he succeed. The best I could do was inform the public by repeating over and over that “my child has Autism and I’m working with him.” Again, this was one of many exposure events to get him acclimated to places he had to learn to tolerate – when absolutely every other intervention had been tried and failed. Yes, I temporarily overrode his will but it was out of love and profound respect for what I knew he could accomplish if pushed beyond his comfort zone; to presume he was incapable without trying would have been infantilizing and disrespectful of his own ability to tolerate discomfort. In the end Zack not only conquered his fear, he understood that he conquered his fear. His self-confidence following this event soared.
Finally, remember this incident was over 10 years ago, there were no “Sensory-Friendly” performances, I would have gladly taken advantage had there been. This was not about me, it was about Zack and taking austere steps to give him a fuller life which he, and every child, deserves. I pushed him because I respect him, while taking steps to ensure he did not hurt himself. He went on to conquer his fears and I’m fully aware it could have gone in another direction, but that was the risk I chose.
Remember the old adage “don’t judge a book by it’s cover” ~ by the same measure, don’t judge my true story before you’ve read it in it’s entirety. If you take time to read my non-fiction account, you’ll see this event in a much deeper context about the urgency leading up to it, the risk of home confinement, signs of depression and chronic anxiety from Zack’s isolation. I don’t tell others to do as I did, but I do encourage other parents to shed the shame commonly associated with our children’s unconventional and even tantrumming behaviors. I believe in telling the truth about autism, and that we advocate best for our children by not getting defensive, just factual. I did, and still do occasionally, apologize for Zack’s disruptive behavior, but never for Zack’s autism. Because he is magnificent – capable of going everywhere and navigating the world with confidence – despite still being significantly impacted and wholly “unrecovered.” I appreciate honest feedback, I hope you will keep reading to get the larger messages about casting off shame, demanding equal access, and allowing our children on the spectrum to live on their own terms. Best to you all in your respective journeys, more posts to come, Whitney
Bystanders were horrified. But my son has autism, and I was desperate.
What I did to help my 5-year-old autistic son overcome his intense fear of indoor spaces might not have been right or even safe. Doctors didn’t recommend it. The people who witnessed it were appalled, understandably. I don’t suggest this for others.
I could have been more patient with conventional methods, but I wasn’t. I am not certified in restraining children, though doctors say anyone attempting what I did should be. They would also recommend a much slower approach.
I am writing this because I hope to educate people about the burden families face when their autistic children have tantrums in public spaces, so next time you witness such a struggle you don’t immediately resort to blaming the parents. I’m also reaching out to fellow parents in pain to remind them to cast off shame, because I believe nothing is more important than getting your autistic children out into the world.
It was a desperate time. Nothing else had worked for Zack — flashcards, photos, play therapy. gradual exposure to feared indoor spaces. That is how, very much against his will, I ended up physically dragging Zack into Verizon Center (now Capital One Arena) one day 10 years ago to see his favorite character, Elmo, perform as part of a “Sesame Street Live!” show.
There is nothing anyone could have said that would have convinced me my son was anything other than precious and worthy of the extreme measures I intended to take to save him from a life entrapped by autistic phobias.
My mind-set that day: If I can get him through this without either of us getting physically hurt, his fear of this place will be behind him for good. He will reset his association with this arena, and it will no longer be frightening. I believe this deeply, but getting him over the hurdle is terrifying.
We enter Verizon Center, and the moment the exterior door closes behind us, Zack reels back and plunges toward it, trying frantically to get back outside. At 50 pounds, his furious strength is a troubling match for mine. He is a thoroughbred of resistance.
My usually buoyant child is slamming his fists and clawing at the metal door’s push bar. I quickly seize him by the shoulders and pry his fingers from the bar as he jerks his head back in a sudden motion. His skull smashes into my chin, and I taste the metallic taint of my own blood.
I give up trying to pry his fingers away, wrap both arms tightly around his torso and yank him back fiercely. We both tumble to the floor. Zack momentarily escapes my grip and scrambles back toward the door, but I leap on top of him, pinning his entire body flat to the ground. We are still in the vestibule.
This was a mistake, too ambitious, I think to myself. Everything is happening too quickly.
Breathlessly, I pivot myself to secure Zack’s entire body between my thighs as I clamp down tightly and interlock my feet to prevent him from breaking free. Zack is shrieking at an alarmingly high pitch, but I keep heaving and dragging us both, inch by dreadful inch, closer to the show’s main entrance area, which we are separated from by a red curtain. I can hear voices around us.
“Hey, lady! Your kid obviously doesn’t want to go to the show!”
An icy shock sprints down my back, and I reflexively arch and look around wildly. Someone has just thrown their soda at me.
No, I’m not giving up.
Suddenly, I feel an imaginary cloak descend and slowly envelop me. These are the moments I’ve been dreading, but also building toward, and I don this invisible armor, now impervious to ridicule because I don’t care what anyone thinks. My singular focus is getting Zack where he needs to be: inside the main area, looking at Elmo. The show has already begun inside, and I know Elmo is on the stage.
Okay, get in his head now, talk back to his thoughts. Keep it simple.
“Zack, you are doing it! I know you’re afraid, but all you have to do is stay here, you’re already doing it, you’ve already won. Just stay and watch, sit and watch, that’s it. You did it. You’re doing it. You did it!” A simple and repetitive mantra to penetrate the panic and break through the force field.
In a now recovered and controlled voice, I loudly announce, “My son has autism and he’s terrified. I’m working with him to get his fears under control.”
A manager strides toward us, summoned to calm the explosive scene.
“Miss, I’m afraid this is too disruptive to the other patrons to let this continue, you’ll have to leave.” No response. Repeat with emphasis. “Miss, you are creating a public disturbance, and I need to escort you and your child out of the auditorium right now.”
“No,” I respond calmly without looking up. “I’m not going anywhere. I’m a paying customer too, and I have a right to be here, and so does my autistic son.”
Suddenly, from the far reaches of my mind, the legal jargon jettisons to the surface. What was that ADA language about the right of disabled people to access public facilities? That they have a right not be discriminated against because of their disability, a right to reasonable accommodations to access public venues. My son is not legally required to enter the auditorium quietly. He’s allowed to enter on his own disabled terms. I am his reasonable accommodation.
Zack will ride in on me.
Okay, one more push forward with Zack squeezed between my legs, and that curtain that separates the hallway where we are and the seated auditorium is within arm’s reach. Once the curtain is pulled back, he will see all the children in their seats, and he will see Elmo on the stage. But I am on the floor and I can’t reach the curtain.
I quickly gesture with my hand to the woman guarding the entrance to please pull back that curtain so my son can finally see inside and glimpse the purpose behind the long, bitter altercation. I need her to act quickly. She tries a few times to reach my son with chirpy words that fall on deaf ears.
“LADY, he’s got AUTISM, please just pull back the curtain!” I hiss.
She wordlessly pulls back the plush red velvet in a single swoop to reveal a bright-red, singing caricature on a large stage, clearly visible even from our long distance. I quickly point Zack in his direction and exclaim, “There’s ELMO! Elmo is singing! Look, Zack, it’s Elmo!”
Zack’s eyes catch hold of Elmo, and suddenly he’s too stunned to scream or speak, his hysteria abruptly interrupted by the sight of a familiar friend. Transfixed by the furry creature, Zack sits still and stares intently.
I quickly move to slide him further along the floor, closer to the cushioned seats. The rigidness in Zack’s body gives way as he relaxes, a literal crossover to the other side.
Zack is as smooth and malleable as liquid as he sits upright, almost unaware of his own physical existence and wholly locked in on Elmo. I calmly walk him to his seat. The past and future are of no consequence; for him, there is only the present.
As I gaze around the auditorium, Zack is indistinguishable from his peers. In these precious moments I can savor the reality that Zack has succeeded in the greatest challenge of his life — overriding his intense phobia of indoor spaces — long enough to access something beloved.
It took 36 minutes and 45 seconds. And, yes, it was worth it.
It was the first in a series of exposures to crowded public places for Zack and me. His transition at the Verizon Center allowed him to enjoy the Elmo show, and also return repeatedly to that auditorium without fear, because he replaced his previous negative association with a positive one. For Zack, the gradual exposure approach was not effective. What worked for him was a single, traumatic episode in which he could grasp the purpose of the exposure and feel good about it.
I spoke with his doctor afterward, and he confirmed that by refusing to allow Zack to escape the place he feared, I broke the pattern of negative reinforcement and allowed him to “reset the record.” I also learned that, as a last resort, in a controlled way and only after years of therapy, a licensed behavioral clinician might have physically restrained Zack to force him to confront his fears, had he not responded to more gradual methods.
In the past, when I’d retreated home with him during a tantrum, I was unintentionally reinforcing his phobia. But the doctor made it clear to me he would not recommend this method for any child unless all other methods had been exhausted, and the child was able to handle it without causing harm to himself or others.
For us, the Elmo success paved the way for outings to other indoor places he feared — Disney World, movie theaters, airplanes, the Baltimore Aquarium. Each exposure required less time for him to acclimate. We found that while Zack was initially confused and frightened, he always adjusted. Over time, he became less fearful of all indoor places. He also gained self-esteem once he realized he was conquering his fears and accessing more of the world. And in possibly his biggest win, his overall demeanor became as calm and predictable as his perception of life itself.
Ellenby is a lawyer, writer and mother based in Montgomery County. This piece was adapted from her upcoming book, “Autism Uncensored: Pulling Back the Curtain,” which details her struggles and triumphs with her son’s autism.
https://www.washingtonpost.com/news/inspired-life/wp/2018/02/27/bystanders-were-horrified-but-my-son-has-autism-and-i-was-desperate/?utm_term=.c30ee54bbc30