Alison Wall is a mom to two awesome kids, Maddy 8 and Emmet 5. Emmet, an ethereal little boy with bright blue eyes, who loves to play drums, piano, and angry birds, and wear his “rocking red shoes,” has been diagnosed with Prosopagnosia or Face Blindness, which is common among those with Autism Spectrum Disorder. To bring greater awareness to Autism on this day and to celebrate her son and his way of looking at the world, Alison shared the following story with us.
“I can have rockin’ red shoes.” This was Emmet’s way of saying, “you will buy me red sneakers just like the ones Pete the Cat is wearing in this book.”
I don’t often give in to “I can have…” but since Emmet needed new shoes, and since Emmet generally refuses to wear anything different than the shoes he’s been wearing, I took advantage of the current Pete the Cat fixation and ran with it. But, I had anxiety about going to the shoe store, which stemmed from my experience the last time I took Emmet to buy new shoes.
That scene went something like this:
“I don’t want to go in there,” Emmet said.
“We’re just going to go in, measure your foot, try on new shoes and then you can put your blue and silver shoes right back on,” I said
After repeating those two sentences a few times, we finally crossed the threshold into the shoe store.
“Hi there. Can I help you with something?” asked the gentleman who owns Village Shoes, which is one of those great, old-school shoe stores where the owners are the ones measuring your feet and where the kids get to choose a toy from the treasure box after buying new shoes. They couldn’t be nicer.
“It’s Grandpa!” Emmet said.
But it wasn’t Grandpa, it was the shoe man, and yet to my son, who has prosopagnosia, the shoe man or anyone with silver hair was grandpa.
Prosopagnosia or Face Blindness is not exclusive to but common among those with Autism Spectrum Disorders. In some cases, it is the inability to remember familiar faces or in more severe cases, the inability to recognize a face as being different from an object. Therefore, people who suffer from Face Blindness will rely on other characteristics to recognize someone. In Emmet case, gray hair=Grandpa.
“No, that’s not Grandpa” I said, “this man just looks like Grandpa.”
“That’s Grandpa!” Emmet repeated about a dozen times—added to the confusion were that the owner’s grandchildren were also in the store. The owner and I were both smiling nervously while the actual grandchildren looked on in utter confusion. And Emmet’s big sister, Maddy was sitting at the opposite end of the bench, trying to make herself disappear.
And then, “Grandpa” said, “Let’s just go ahead and measure your feet buddy,” and Emmet’s delightful, if somewhat repetitive, “that’s Grandpa!” suddenly turned to, “I don’t want Grandpa to do that!” A phrase which he repeated over and over, his voice escalating more and more each time, and the owner’s smile lessened, as he glanced over at his grandkids who now looked on nervously. My shoulders tensed, and Maddy let out an “Oh God”! and I hated myself. Hated myself for thinking I could do this without my husband. Hated myself for subjecting Maddy to this. Hated myself for expecting Emmet to act like a “normal kid.” I hated myself because there was no one else to hate.
Eventually, like many previous situations, we got through it and found Emmet a new pair of shoes. While the owner of the store was ringing me up, I explained, “I’m sorry about that, my son has Autism and..”
“Oh that’s alright, no worries I think he might have scared the hell out of my grandkids though, hahaha.”
This man was upset that his grandkids were scared and he needed to let me know that and, in a way, I couldn’t blame him. But Oh Man, did that hurt. My sweet son, my sweet boy who was merely reacting to his own anxiety, an anxiety which he didn’t know how to express except through acting like he was acting, which, to him, was normal. I still don’t know what it was about having his foot measured that set him off. It might have been one of his sensory-sensitivities, which is also common among those with A.S.D.’s. There are so many situations that make Emmet nervous. Sometimes he can express that to us, but most of the time, he can’t. And like most people, when Emmet feels scared and nobody around him understands, he gets angry.
So now here we were at Champs Sporting Goods to buy the “rocking red shoes,” and none of us really knows what to expect. Will it be a similar situation like last year or will it all go smoothly. I knew that Emmet’s language had improved greatly from last year and that he’d gotten better at expressing his needs and concerns, but I still couldn’t know if something would set him off.
In we walked and off Emmet went, right to the red Converse high-tops on display. He grabbed one and said, “here are my rockin’ red shoes.” The young man who worked there was sweet; he measured his feet all incident free, and Emmet got his rockin’ red shoes.
Like so many things about Autism, it is a mystery why this experience was so different from the last. But we are learning more and more each day and the more we learn, the more we understand and the more we understand, the more tolerant and compassionate we are. So today, World Autism Awareness Day and every day, I urge everyone to learn not just about Autism but about everything, so we understand the world and each other a little bit better. Because when we don’t understand something it can be terrifying, and when we become terrified, we become angry.
Please let us continue to work together to raise awareness about Autism.
Thank you Alison Wall.