AUTISM IS NOT CONTAGIOUS – by Dana Meltzer-Berkowitz
Meet Ethan, my adorable and sweet son whom at the time this photo was taken was 3 months shy of turning the tender age of 4 years old. Ethan’s favorite word is “hug” and if you show him kindness and affection, he will surely give you a great big hug, even if you are a stranger. He is very demonstrative, and most days has a smile glued to his face, with a giddy laugh to go along with it. Ethan also has a diagnosis of moderate to severe autism, with severe language delay, but despite this he has proven over and over that his capabilities our limitless.
Just shy of 2 years old Ethan started early interventions services with CPNJ (Cerebral Palsy of North Jersey), working 7 days a week for over a year with Ann Thompson, a special education teacher, and Suzanne Reilly, a child development associate. Thanks to the CPNJ family, Ann and Sue, my son went from a world of being nonverbal and non communicative, to being able to talk and “have a voice.” While we are so grateful for the gift of words, what is equally important to us is that Ethan is a happy child. So most mornings at 7:00am we don’t mind when we hear the pitter patter of little feet, giddily laughing, running towards us with a wide eyed smile, as we lay half awake in bed. When we hear the words “go play” we cannot help but think, what could have been if it wasn’t for CPNJ and their services.
On this beautiful fall day, when this photo was taken, my son was celebrating a friend’s birthday with children around the same age as him. The children were just as sweet as Ethan, happily playing with one another, bouncing, and running throughout the gym with not a care in the world. The way it should be when you are 4. While my husband Jeff and I tried to immerse Ethan into the group, it just was not possible. Ethan preferred to run aimlessly throughout the gym, ear flapping, and when he wasn’t doing that he was opening and closing doors in a repetitive manner over and over and over. These are characteristics of some children with autism, and Ethan has them. As my husband and I go chasing after Ethan in a team tag manner we can feel the eyes of the other parents on Ethan, and us, and hear some of the whispers. When you have a child with autism, you live your life with people’s eyes glued to you and your child, you live your life with judgment no matter where you go, and you live your life where sadly most people fear your child. So while I had been through the whispers and stares so many times before, this particular day unsettled me, because some of the people knew Ethan.
The picture you see of my son is supposed to be a group photo, but not one child in the group would stand next to my son. As Ethan kept moving closer to the child on the end to stand with the group, each child would hop out and move to the other end, so they would not have to stand next to Ethan. As I stood there watching this unfold, I wanted to scream, “my son is not contagious, autism is not contagious.” But I did not. I stood there holding back my tears praying that one child; just one child would stand next to my sweet boy. I prayed that one parent would know enough about autism to intervene and say “its okay, he is not going to hurt you, stand next to him for the photo,” but nothing. Nothing but two parents engaging in a subtle laugh that no one child would stand next to Ethan, whispering about the occurrence. I thought to myself, “what could possibly be humorous about a child not even 4 being isolated?” Do they not notice that my son is sad? Do they not understand that despite my son’s disabilities, he can feel emotion too? “Please, please,” I said in my head, “someone walk over to their child and have them stand with Ethan.” But nothing. I thought about running to him but I kept thinking, “Someone is going to walk over to their child and let them know it is okay to stand next to him.” But remarkably, that never happened.
Ethan might not have understood why the other children kept moving away from him, but he understood that he was alone. He understood he was not part of the group and as my son likes to say, “play too” which means, “I want to play too.” Thankfully, a few minutes after the children dispersed, my son ran to me as I was running to him and he gave me a great big hug followed by a giddy laugh, and he was back to opening and closing the doors to the gym, with most likely having no recollection of the incident that had made him feel so sad. Admittedly, I was somewhat relieved that he was not able to process or reflect on the incident.
When we moved in the room for pizza and cake not one child would sit next to my son, so I sat next to my son and we had an empty chair and plate on the other side of him…and then it hit me. The children are afraid, because their parents are afraid. Children get cues from their parents on what is safe and if the parents aren’t saying “it is okay, he wont hurt you,” or “sit next to Ethan for pizza” they will not.
Ethan got diagnosed several years earlier and we had already been through our fair share of “excuse making by others” of why their children cant be around Ethan, and most of the reasons are fear…fear that their child or children will pick up autistic tendencies like Ethan’s ear flapping, or fear that the child is violent. The number one question when Ethan got diagnosed was “When will he become violent?” And all I could say was “hopefully never.” But that question showed me a lack of understanding about autism, and all of the stereotypes that follow.
As a parent you want to keep your child safe, and I get that…but here are my thoughts on both violence in autism, and autism being contagious. Violence, observe my child just like you would want to know the behaviors of a typical child. Would you allow your child to play with a typical child if they were aggressive? No. Just like not all typical children can be categorized, children with special needs can’t be grouped either. You cant say, “All special needs children are violent” because they are NOT. Each child is special, each child is different, and each child has different handicaps and strengths.
If you don’t see my child hitting, biting, kicking, punching, spitting and you see him hugging and being lovable…chances are he is not violent. – As for the behaviors, autism is not contagious. Your child will not start ear flapping, stimming, or doing repetitive behaviors because your child sits next to my child for a piece of pizza, plays with my child, is in the elevator with my child, at a park on a swing next to my child, and while the list goes on I want to stress your child will not catch autism if you stand next to my child for a photo.
My cousin, Lisa, who is a Pediatric Intensive Care Unit nurse at Hackensack hospital, and her husband Timmy who works in law enforcement, have both been educated in working with all populations, even special needs. They understand autism is not contagious and have allowed their children as young as ages 4 and 6 to play with Ethan on a regular basis. Their children have never picked up one characteristic that Ethan has due to his autism, nor imitated his behaviors, not one. If anything, it helps my son tremendously to see what authentic play is, and be around children who can engage in creative play, the areas Ethan struggles with. It also helps my two little cousins to be socially and emotionally aware of other children who have a disability, and to have patience, so it is a dual benefit for the children.
As I continue to be my son’s voice, because he cannot be his own, I will advocate to educate parents so they teach their children not to fear people with exceptionalities. Children are not born apprehensive of special needs individuals, they are taught to be. The children of these parents, who are being brought up to fear people with disabilities, will most likely be with a disabled person at some point in their lives. Whether it is in college, or in the workplace, on a sports team, in their classroom with a teacher’s aid, or their place of worship, they will be with people with disabilities at some juncture throughout their life. Do you want your child to respect people with disabilities, or disrespect? Do you want your child to fear people with disabilities or be confident? Do you want your child to be exclude or be inclusive? Even worse, do you want your child to discriminate against people that are disabled or embrace them?
April is autism awareness month and it is invigorating to see so many countries, schools, and communities around the world, supporting autism. From the Oriental Pearl Tower in Shanghai, to the Magic Castle in Walt Disneyworld, a few towns over right here in Bergen County NJ Waldwick school system, & proudly my sons multiple disabled pre school in Woodcliff Lake NJ who launched a district wide effort to educate staff; they are all lighting up blue to show their advocacy and assistance. Building awareness is the best way to educate parents, and the community, so they can teach their children, so next time at a birthday party my son is standing with the group.
I dedicate this article to all the people who have stood with Ethan, for Ethan, in support of Ethan, so he, or any other person with a disability, never has to stand-alone.
12/21Holiday Sing Along