Stranger number one: A man seated next to me on the flight from New York City to Denver. He was distressed and upset because of the extensive delays we experienced and assumed he would miss his connection home to Vancouver where his two sons and wife awaited him. As he spoke to me, he looked over at Emma, seated in the window seat and who appeared to be sleeping, thumb in her mouth, head resting on her horse pillow, a small scrap of her green blanket clasped in her fist. Her hair fell over her face, covering part of it. He nodded toward her, “She’s tired, huh?”
“Yes,” I said, looking over at her and smiling. Emma opened one eye and made a little grunting noise, before closing her eye again.
He asked me if I was traveling alone. I explained to him that in fact we were all spread out over many rows. Because of all the delays the airlines changed our seats, giving most of us middle seats, making it impossible to convince anyone to switch with us so that we might sit together. At a certain point, I took a lapse in the conversation as an opportunity to pull out my book, Representing Autism.
“Are you a teacher?” the man asked.
I told him I was not, that my daughter was autistic and it was a subject I was particularly interested in.
“Ah,” he said, knowingly. “My eldest son is too.”
He went on to relate how his son had been poisoned by high levels of lead because his wife had drunk tea throughout her pregnancy from a samovar. This was confusing as, strictly speaking, his description would make his son’s issues lead poisoning and not autism, but before I had time to think of an appropriate response, he told me that because they had him chelated he was now high functioning and that God had blessed him with a child who could speak. And while I think it’s wonderful many people find solace in “God” I really hate comments like this, where it has to then be concluded that God is not blessing others with things like poverty, starvation, murder. I know, I know, don’t get me started.
He then told me his wife contributed to his son’s autism because it was genetic and “the mother carries the genes that cause autism. That’s why more than 80% of them are boys.” This last remark was so staggering in it’s complete lack of logic I was thrown into a state of stunned silence. Then he capped the conversation off with a nod to Emma and asked, “Is she functioning?”
Do NOT say another word, I pleaded silently, while also thinking, You have the chance to say something that might change this man’s point of view. But I couldn’t. I was too angry and tired, the delays had taken their toll. I had hit a wall, silently cursed this man and just wanted to escape into my book. I no longer felt magnanimous or in the mood to offer an opposing view. I felt hateful, furious and resentful. I was disturbed by the man’s, seemingly unintentional, but never-the-less confused ideas of cause and blame, not to mention the casual comment about chelation coupled with how his son’s heart stopped twice while doing so and that didn’t even cover the comment about God, which would have taken me down a whole other path.
“Does she speak?” he continued.
“She’s autistic. Her hearing is actually excellent,” I snapped. “And I do not speak about her as though she cannot understand. Her intellect is as sharp as her hearing.”
“Oh!” the man said, taken aback.
All thoughts of offering patient opposing views in a kind tone went out the window. I pulled out my book, a pen and my notepad and began reading. End of conversation. It must be said, this was not one of my prouder moments, but I didn’t have it in me, I just didn’t and it depressed me that so many are so misinformed.
The second stranger was a woman with two small children who asked me, as Emma and I were waiting for the bathroom, if I would keep an eye on her two kids so that she might use the bathroom. Emma peered with curiosity at her daughter who was four-years old and son, who was not quite two. “Boy,” Emma said, pointing at the little boy.
“Yes,” I said, kneeling down. “What’s your name?”
We learned that the children, Alice and James were also headed for Aspen on the same connecting flight as us. Their Dad couldn’t go with them, but their Granma was meeting them in Denver. When Emma and I returned to our seats, Emma said repeatedly, “Go see Alice and James. All go together to Aspen. Go to Granma’s house and play with Alice and James.”
When we found the gate for our connecting flight, there was Alice and James with their mother who proceeded to ask Emma questions. “What was her name, how old was she, did she have a brother, his name, age, where we were going, etc. All the questions she directed to Emma and she waited for Emma to answer, even when it seemed she might not. A couple of Emma’s answers were somewhat cryptic, as when asked what she liked doing when in Aspen and Emma answered, “Make cake.” But all in all it was really nice to see someone behave in a sensitive manner while respecting Emma’s need to process, giving her the time to do so. It was in stark contrast to the first stranger.
This morning when I told Richard I was posting this piece, I said, “I’m too tired to find the humor.”
“My brain is operating on a case by case, need to know, basis,” Richard replied.
And that remark made me laugh.
(Photo credit: Wikipedia)
Thank you for this post. It goes to show that “understanding” can come from a person who may not be intimately affected by autism, just as “misunderstanding” can come from a person who has autism in his life. I don’t know if I can simmer down the way you did in response to the father’s statements, maybe I’d be stunned into silence. On the other hand I loved how that mom asked Emma directly her questions.
It was interesting, she never once looked at me with that questioning look we so often get from strangers. She never asked me anything, but just spoke to Emma as one would any child. It’s incredible, in its own way, how grateful I was to her for that.
Wow, nice to know this guy just totally blames his wife. He must be a peach to be married to!
I soooo hear you about the God thing. Whenever I hear the patronizing viewpoint of “God must have known you’d be a good mother to her”, I want to rippin people’s effin heads off. Seriously? Because if I’d had a chrystal ball ten years ago, I wouldn’t have had kids at all, period. Yep, that makes me Mom of the Year, doesn’t it?
Don’t beat yourself for not getting into it with this guy. You cannot fight every battle you come across, it’s just too much. I find that I don’t have the time, energy, or inclination to explain autism to everyone I come across. You can only do so much.
Someone said to me once (she was single and in her twenties) God must think you very strong to have given you Emma. And all I could think about was how idiotic that kind of illogical thinking was and how insulting to Emma. I remember I stared at her and then walked away.
I agree with Angie. God doesn’t cure autism or pick the parents any more than women drinking tea from Samovars causes it. Sometimes you just can’t fight and argue and explain to people. We spend so much of our lives doing that you have to walk away (or put your head in a book) to preserve your own sanity. x
When he mentioned the Samovar, I got a little side tracked as I kept envisioning these beautiful urns I’d seen in Turkey and imagined his poor pregnant wife delicately sipping from one of them!
Yes, I think you’re right. Continuing a conversation would have been a waste of time.
Emma did make cake in Aspen! I am providing this update as a public service to the fine readers of this excellent blog, because cake rocks!
This is true. Ibby knows these things. And Emma LOVED eating a big piece of the cake she made – vanilla, vanilla – she’s a purist.
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I think you handled the man on the plane with more grace than I would have in the same circumstances! And Angie is right, you can’t fight every battle that presents itself. But kudos to you for wanting to fight, for having the patience and energy (sometimes) to cut through such ignorance and prejudice.
I find in my work that families that parents often have to not only care for their child and do their own learning, but also act as constant advocates and educators for others. Sometimes it feels exhausting just to hear about the constand fight, so I have utter respect for those that take it on.
I think your self control with the first fellow was admirable. You defended Emma, and he could not argue with that. But trying to tackle him on the rest is like nailing jelly to a wall- there is no substance. It makes me sad that he was bigoted towards his wife in this way; but there are many cultures that blame women for any issue to do with birth. It makes me angry that he equates lead poisoning with Autism, and it makes me severely pissed off that chelation is even legal. Surely children have a constitutional right not to be tortured by their delusional parents?
If I was kooky enough to want to stop my daughter menstruating, I would not have the right to medically intervene in her reproductive system. And if I tried I would be locked up, rightfully so. so how do these parents get away with physically tortuous treatments like chelation & salt bleaching?
Hooray for the Mommy you met later, and Hooray for Emma’s conversation. xx
Hi Lisa, with all the traveling I’ve been doing, somehow this comment of yours fell through the cracks. I’m so sorry. It was posted, but I neglected to reply, which to me, seems a bit like someone coming over, finding the door open, yelling a friendly hello only to have silence in response. So a belated – Hello! Loved the nailing jelly to a wall analogy. It was a looooong flight, with me buried deep in my book or engaging with Emma in playful silliness. And yes, the other mom was in such stark contrast and such a relief!