What is Normal – Continued

A few weeks ago while at the swimming pool with Emma, a woman asked me where she should take her two grandchildren, who were going to be staying with her.  After inquiring what the age of her grandchildren were – just a bit younger than Nic and Emma –  I began with a list of parks, (all with water features) moved on to museums, then zoos, botanical gardens etc.

At one point she pointed to Emma, who was standing near me twirling her hair around her index finger, and said, “What are her favorite things to do?”

I waited to see if Emma would respond, when she did not, I said, “Emma likes any park with water and the Central Park carousel,” I said.  As I was speaking Emma was twirling her hair and opening all the lockers in the dressing room.  Trying to engage her I said, “Hey Em.  What do you like to do on the weekends?”

Emma turned to me and said, “You have to ask Mommy.  Mommy can I go home now?”

The woman looked kindly at Emma, then with a certain amount of confusion said, “Oh!”

“Emma has autism,” I said.  “Pronouns have always been tough.”

“I would never have guessed that looking at her,” the woman said.

I put my arm around Emma and said, “It was nice speaking with you, have a lovely time with your grandchildren.”

As we left I thought about what the woman said.

Autism is often invisible.  With many children they have no discernible signs of physical issues, they look healthy, they seem “normal”.  Unless one tried to engage Emma in conversation, one would never know there was anything amiss.  Even then, I’m surprised by how often people still don’t know.  We have such a wide range of what we deem “normal” in human behavior.  I think people assume they are speaking to a neuro-typical child and so it can take awhile before they discern that they are not.  In Emma’s case she also can appear shy or perhaps people assume she’s one of those children who hasn’t been taught to be “polite” and answer when spoken to.   Many of us find it confusing to see someone who “looks normal”, only to find there are deeper neurological issues lurking.  Most people think, when first meeting Emma that she’s aloof or bored.  Sadly, many people assume she hasn’t been brought up properly and so they become rude or scolding, speak to her harshly, before I can intervene.

So what exactly is normal?

I don’t know.   But I’m not convinced it’s anything I aspire to.

Emma eating lunch at camp

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

4 responses to “What is Normal – Continued

  1. I really like the way you phrased that, Ariane: Emma HAS autism. For some reason, that spoke to me as I read the post. It just strikes me as more accurate, the more and more I read about her, that she HAS autism, more than she IS autism. I feel like so many people and places are so quick to place kids “on the spectrum” in a pigeonhole. Clearly, it takes a lot more to define Miss Emma than one short word. Not sure this is making a heck of a lot of sense, but in light of how much I am learning about her from the blog, it just struck me as a powerful sentence (though probably seemingly inocuous!)

  2. I was literally just thinking of you this morning, wondering where you were! So glad to hear from you. I absolutely understand your comment and agree. I began to very consciously refer to Em as having autism or being diagnosed with auttism as a direct result of reading about a mother who hated when other people referred to her child as autistic. She talked about how we don’t define other people by their cancer or their epilepsy. It made me think about the labels we use – oh she’s bi-polar or he’s schizophrenic and how it tends to overshadow the person. Emma is Emma and we admire, love and root for her every moment of every day. Rooting for you too, dearest one! XXX

  3. I agree, I never say my kids are autistic rather they have autism. They are people first and very different to each other. I was very hurt to hear someone who was a neighbour and known my children sicne they were babies describe my daughter as “the autistic girl” She isnt autism she is Roslyn, with feelings and talents and traits that are all her own.

  4. Yes it diminishes our amazing children. Reducing them to a diagnosis, instead of the incredible beings that they are.

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