I want to start out by saying that I’m not trying to lay blame on anyone, especially my parents, with these posts. The purpose of this blog is twofold: 1. to explore my newly diagnosed autism, and 2. to help neurotypical parents of autistic children understand how some people experience autism. I say “some” because autism is a spectrum and, thus, differs from person to person. The only way I know how to do either of those things is to look back at my own experiences and how I interpret them now. I grew up in the 1970s and ’80s, when autism was not as well known as it is now. I’m not sure my parents had even heard the term autism, so forget about sensory processing disorder. Even if my parents had known I was autistic, they wouldn’t have known what to do about it or had access to therapies to help. And there was no internet to turn to. They were good parents who did their best. Love you, Mom.

That said, I want to continue the food discussion from the last post. Specifically, I want to address the fact that most of the effects of sensory issues are invisible to the person not experiencing them beyond the protestations of the person having the experiences. And fear. I think fear plays a big part in it, but I’ll get to that later. Even if the effect is visible, the cause and effect relationship isn’t always easy to make.

If someone is allergic to peanuts, for example, it’s easy to see the hives that break out on skin or the struggle to breathe. I’m not suggesting that a nut allergy is not serious, in fact it can be life-threatening. I’m merely pointing out that its effects are observable to the naked eye, whereas insistence by a child that he doesn’t like peanut butter seems, to the observer, more like a preference. Maybe it is just a preference, maybe it isn’t. My point is that you can’t tell from the objection alone, or even gagging after a bite, because a kid trying to get out of eating peanut butter by fake-gagging at a taste of it looks no different to the observer from a kid actually gagging because the peanut butter makes his/her body react that way.

And so, sensory issues often get lumped into the preference category. They are seen as something that the person could overcome, could get past, if only he/she would stop being so stubborn and try.

It doesn’t help that sometimes it seems as if this is true. For instance, I was afraid to try many foods until, in my early twenties, I decided to just try things. As I mentioned in last week’s post, I decided to try Chinese food and I loved it. Same is true for Indian food. And Thai food. So it looks like I was just missing out due to my own stubbornness. That’s what I thought, too, until my kids brought me knowledge of sensory processing disorders and I realized (very gradually) that it wasn’t stubbornness.

It was fear.

Golden dragon breathing fire by Artistic-Dribbles

Golden dragon breathing fire by Artistic-Dribbles

Imagine you’re looking for your friend who lives on a long hall with lots of doors. You don’t know which door belongs to your friend, but they all have signs telling you to come on in, so you open one only to find a dragon waiting behind it. Before you can slam the door, the dragon blows a stream of fire at you, burning off all your hair. So, when I tell you that foods that are problems for me are like an assault on my senses, I’m saying it’s like I know the dragon is behind that door – that food. It’s not like my preference for peaches over blueberries – that’s just about sugar. No, a food that’s a problem for me makes me gag, a physical reaction over which I have no control. I have to spit it out because, if I try to swallow it, it’s coming out anyway, but with a lot more force. I slam the door and only then can I see that there’s dragon slobber on the knob. I know I won’t be opening that door again, but you don’t always know which other doors might be hiding dragons until you try them. When you’re a young child and virtually every food is new, this happens a lot and, as unpleasant as it is for the parents, it’s even more so for the child. I can say that with some authority, having been on both ends of that equation. So the child becomes wary, even afraid, of trying anything unfamiliar. At least, I think that’s what happened to me at a subconscious level.

As an adult, I am generally capable of disguising my revulsion and getting rid of of the food in my mouth discretely. As a child, I made a pretty big deal about it. I was, I think, quite the drama queen. I know this was rough on my parents, especially my mom. It was nearly impossible to take me to a restaurant, a predicament with which I now totally relate. As I grew older, my mother swallowed her extreme embarrassment and began to take me to her favorite Mexican restaurant with a McDonalds bag under her arm. I know that was hard and I’m glad she did it for me. The drama queen act makes it seem even more like a preference unfolding into a power play.

I think that’s where the idea that they’ll eat if they’re hungry enough was born. I’ve been given this advice. In some remote part of my brain, I still want to give this advice. The thing is, the starve ’em out method won’t really work on someone with sensory processing disorder because that person is not playing a game. It’s actually pretty tortuous and ineffective because that kid is going to wait you out. It would take several days of complete starvation to make a kid eat something he/she has such a strong aversion to. No parent wants to put a kid through that. Even if the parent thought it would work in the end, what kind of damage would you be inflicting on that kid? No, I think proponents of that theory believe that it will work overnight.

We used to go visit my cousins in the summer. We would swim for hours and I was always so hungry after. My uncle would take us through a drive-thru on the way home. I would ask him to request no mustard on my hamburger, but he always refused to do it. So I would sit there, starving, with an untouched hamburger with mustard and ketchup and a sleeve of French fries in my lap. He would tell me to scrape the mustard off, but, first of all, there is no way to get all the mustard off a hamburger, and, second, even if I could have, that hamburger had touched the mustard and I wasn’t going to eat something that had come close enough to mustard to touch it. It basically had dragon slobber all over it. That’s how revolting mustard is to me. I could have eaten the fries except that I didn’t like them. Sometimes fries taste like lettuce and that makes me gag and there’s no way to know which fries will taste that way, so they were off my list of edible things. So I would sit and starve while my cousins ate and it would have taken more than a couple of days with no food to get me to put any of that in my mouth. This was not as a toddler, either. I can remember it from as late as ten years old.

Even if you did win the argument and got the kid to eat the food in question, it wouldn’t really be a victory. For parent or child. Once, while visiting her mother, my mom made me eat my grandmother’s homemade vegetable soup. The recipe was her pride and joy. Everyone loved it, especially my mom. I don’t remember how she got me to put the spoon in my mouth, but I do remember that I vomited after just one bite. My mother was horrified by the insult to my grandmother and insists to this day that I made myself throw up just to spite her. But I can assure you I did not. I can’t induce vomiting by sticking my finger down my throat, let alone do it at will.

After my boys were diagnosed, I learned that their behavior was not about asserting their own power or making things harder for me and that helped me let go of (most of) the resentment around their food choices and limitations.

It’s not out of spite. It’s really not. It’s not about being stubborn, either. And it’s certainly not a power play. It’s about real, physical aversion.  And maybe, at least a little, about fear. And dragons.