“Hello, my name is…”
written by Maria S. Crawford
When Zane was first diagnosed, I struggled with how to tell people. I had known in my gut long before the doctor told us and had already confided to a few close friends and family members what I had suspected. But, getting that official “label” of autism was so different.
Did we want the world to know? Would he be judged? Would he be treated differently? Should we just say he had a speech delay or learning disability? Would this label be a burden to him for the rest of his life? All these questions, plus a million more, swirled through my mind each night as I laid down and every morning the minute I woke up.
When we finally started ABA (Applied Behavior Analysis) therapy and immediately saw Zane making progress, I knew everyone in his life would need to get on board with this program. That meant everyone in our village had to know...ZANE HAS AUTISM. Saying it out loud to others made it real.
In the beginning it was easy because he was so young. People were very understanding and even sympathetic. His public tantrums were more manageable and easier to deal with when I explained to onlookers that he had autism. In fact, often people even tried to help. I used the autism word freely and openly and felt I was doing a public service by educating those around me.
It was not until about a year after his diagnosis at 17 months, that I realized the gravity of labeling him autistic. We had been interviewed for an article in Torrance Hospital Magazine about families with kids on the spectrum. Little did I know we would not only be featured in the magazine, but our family picture would be on the front page with the headline “Navigating Autism".
At the time the magazine came out, I was in Texas and had not even seen it. A friend texted me about it, surprised because Zane seemed so ‘normal.’ “Hmmm, I thought she knew” I said to myself. When I came home a few days later, an acquaintance approached me at the store. She had seen the article and wanted me to know how brave we were to talk about Zane’s autism, and she had no idea he "had IT".
Suddenly it hit me like a ton of bricks. Time froze as I realized that I had just told the entire world (or at least it felt like it) that my son had autism and there was no turning back.
Maybe I was overly sensitive, but it seemed that as soon I gave Zane his autism label, I noticed more and more people reacting to that label. Sometimes it did not matter. But, many times it did.
Like the time at My Gym when I told a fellow mom (whose son had been playing with Zane) that Zane had been diagnosed. She subtly began to keep her son away from us and never really spoke to me again. She clearly had no idea what to do with his label. Oh, sure there was the awkward “hi” every now and then, but it was obvious she did not want her son being friends with the "autistic kid". And if I am being honest, she probably did not want to be friends with the autistic kid’s mom either!
Then there were the times when Zane was in kindergarten and I was getting to know all the new parents. Everyone would hang out after school talking about playdates. It was not hard to notice the moms who did not stick around once they saw Zane’s label. It was like all the kids had on name tags with “HI MY NAME IS…” and Zane’s name tag said “HI, MY NAME IS AUTISM.”
Those same questions came flooding back. Would he be judged? Would he be treated differently? Should I just say he had a speech delay or learning disability? Would this label be a burden to him for the rest of his life?
For so long, Zane did not even know what autism meant. I would try to explain it to him. He would just look at me and smile and say "ok, cool!". One day in 5th grade while waiting by the front gate at his elementary school, he was making some odd noises (noises that EVERY kid makes). The student standing next to Zane gave him "the look". The look that every mom of a special needs child knows all too well. Then I overheard one of Zane’s friend’s whispering to the kid “he has AUTISM.”
It made me sad that the friend did not just put his arm around Zane and start talking to him or heck even make silly noises too. But, at the same time I also understood the friend was just making sure the other kid knew why Zane was acting strange. Afterall, it was the same explanation I had used so many times when he would tantrum in public. I started to wonder. Why do we even need to explain in the first place?
When Zane was going into middle school, he decided on his own that he did not want anymore “helpers” (what we called his therapists). He worked hard to “graduate” from ABA therapy, and he finally succeeded that summer. At his graduation party he asked me, “Mom, since I don’t have helpers anymore, does that mean I don’t have autism anymore?”
That question hit me like a ton of bricks. Time froze, just like in the store so many years ago. It was a pivotal moment where Zane was about to realize that he will always have the label, with or without helpers. So, I cautiously answered “Well, you will always have autism and you will always need helpers. BUT everyone has helpers in life, they can be your friends or teachers or family or even a stranger. You just need to ask for help now and when you do, you can choose to tell that person you have autism or not.”
Later that day, we talked a little bit more about autism and the label he had been wearing for years without even knowing it. He told me that sometimes he is ok with people knowing and sometimes he is not. I reassured him that it is his decision and that having autism is nothing to be ashamed about. That his brain works different, but how incredibly amazing his autistic brain is! He is unique and perfect, and God made him exactly how he is supposed to be. Yet, it is still gut wrenching to watch him struggle to fit in when he sticks out so much.
Zane is heading to high school next year. I still worry that the label I gave him so many years ago will affect his ability to make friends. I still wonder how many people will only see that label and not the true, genuine, amazing person inside. I know there are many more hard conversations to come as he navigates the teenage years, girls, and hormones. But I am so grateful for all of these conversations knowing that he was non-verbal when diagnosed.
Lately Zane is learning to advocate for himself and that includes telling people he has autism when he feels anxious or confused. I love that he can put the label on and then take it off whenever he wants.
Does HE want the world to know? Does HE feel judged? Does HE feel like he's treated differently? These are questions only he can answer now.
If I had to do it all over again, I do not think I would change a thing. Because, at the end of the day, Zane is so much more than the label he was given and the only thing that needs to change is people's perspective.
Maria is a choreographer, wife to husband Fred, and stay-at-home mom of two wonderful sons—Daniels, 22, and Zane,15. Zane was diagnosed with autism at 17 months old. She is a volunteer advocate for L.A. Feat and started a peer mentoring program in their school district called the IN Crowd. Redondo Beach, California is home for this dynamic family.
