1/07/2013

Seeing it differently: The rigidity of neurotypicals

It's common knowledge that people on the autism spectrum prefer doing things the same way whenever possible, and often insist on it, even if sticking to their routine would be inconvenient to everyone around them.  The current edition of the diagnostic bible, the DSM-IV, even lists rigidity as a central characteristic of autism:

    (C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
    1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
    2. apparently inflexible adherence to specific, nonfunctional routines or rituals*
    3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
    4. persistent preoccupation with parts of objects

So one might assume that autistic people are rigid, while neurotypicals are flexible.  After all, if a trait is listed as differentiating a disorder from the normal population, it must not be common in the normal population.

But what if the rest of us are just as inflexible--maybe even more so--only about different things?

Consider the stigma kids with food allergies face.  I know about this firsthand because, being born in 1989, I was the only kid in my suburban neighborhood, and the only kid I knew, with food allergies.  No one sold gluten-free food in those days, so we had to drive way out to a health food store in which we would never have otherwise set foot.  Fortunately, I escaped a lot of the stigma because I homeschooled from kindergarten through fifth grade, and most of my allergies went away by the time I was six.

Having food allergies places children at risk of bullying; a recent study in Pediatrics reported that over 30% of children with food allergies say they have been bullied about their allergies.  In still more children, it leads to social exclusion.

The reason is that most cultures bond over traditions involving food.  As Catherine Alvarez eloquently puts it:
When a group shares food, we are saying we are a family, a team, a tribe.  Many cultural traditions and religious rituals involve the sharing of food.  We use it both as an offering and as a way of increasing our status within the group.  We use it as a way of connecting with one another.
 In the case of American kids, common rituals include parents bringing cupcakes and other treats to class for children's birthdays or for holidays.

Anyone might predict that children with allergies to common ingredients like wheat or milk will not be able to share these treats with the rest of their class, and will feel or be excluded because they missed out on participating in a shared ritual.  But there's more to it than that.

As any person with food allergies or their parents could tell you, some parents and teachers feel angry about restrictions on bringing treats to class or requirements to also bring food that children with allergies could eat.  Some deliberately circumvent these rules, while others obey, but grudgingly.  Catherine Alvarez, a blogger whose children have food allergies, found to her surprise that these parents and teachers saw the safety rules not as necessary for protecting children's safety, but as arbitrary barriers preventing them and their children from participating in food sharing traditions necessary for their own, and their children's, social connections and standing.


What happens when there is a student with a food allergy in the class: A parent brings cupcakes to class.  My son is offered a cupcake, but he must say, “No thank you, I have food allergies.”  He is allergic to egg, and these cupcakes almost certainly contain egg.  This is the first moment where the food sharing ritual breaks down.  The food allergic person is forced to refuse the offer of food.  In many cultures, refusing an offer of food is considered rude.  Even though he gives the reason (food allergies) this is often not accepted.  People become defensive, and don't believe that the allergy is real or serious.  They offer objections: Their friend's child is allergic to egg but can tolerate baked goods, so this cupcake is okay.   A little bit won't hurt.  They are pretty sure the item doesn't contain eggs, and so on. To them, his rejection of the food feels like a rejection of the person offering it. 
Children with food allergies are put in the difficult social position of having to stand up to adults who are determined to give them unsafe food.  My son tries to mollify them by saying, “It's okay, I have my own treat.”  Or he will take it and “save it for later,” but trying to avoid the stigma of the food allergy by saying that he is not hungry is not very effective because this is also seen as a rejection of the person offering the food.  Eating his own treat does not serve the same symbolic social function as sharing what everyone else is eating.  In fact, it carries the opposite meaning: he is separate, and not part of the group.  Having to refuse the offered food sends the message, “I don't trust you, and I don't want to be part of your group.” 
Even if the food allergic student's parents try to compensate by bringing safe food to share with the whole group, the inability to reciprocate by accepting food from others creates stigma.  When the parent of a food allergic child overcompensates by bringing multiple offers of food to the group, that is often met with resentment from the other parents who feel they are not given equal opportunities to share.  This is a no-win situation, and the resentment of the group is expressed as ostracism of the allergic child and his family. 

Think about this for a minute.  There are any number of rituals that parents could engage in with their child's class.  They could do a little investigating and figure out a snack to bring in that everyone in the class could eat.  Or they could forget food altogether and bring in a fun craft or demonstration for the class.  It wouldn't be hard to include everyone and still achieve their social goals.  But instead, they insist that the food sharing ritual will go exactly the way it always has, ignoring that this sends a message to the allergic child--and the rest of his class--that he isn't worth including.  As I've argued in an earlier post, kids take their cues from the adults around them, and if adults think a kid doesn't matter, his classmates will see no problem with bullying him.

To these people, doing things the same way they always have is more important than kindness to others, more important than a child's health and safety.  Is this not the definition of rigidity?  And these people are considered not to have a disorder--they're supposed to be normal, healthy, "empathetic," functioning members of society.

But we don't look at people like this as rigid, because they're rigid in a way that we're used to, one revolving around social rituals.  We do notice the rigidity of autistic people, because their way of being rigid looks alien.

Sure, the rituals of autistics inconvenience their families and friends to no end, but how many autistics put their rituals above other people's safety?  Probably none.

Yet autistics are considered dysfunctionally rigid and people like these neurotypical parents are considered perfectly healthy, despite the damage they cause to others.  Does this make any sense to you?  It doesn't to me.

References
Shemesh, Eyal, Annunziato, Rachel A., Ambrose, Michael A., Ravid, Noga L., Mullarkey, Chloe, Rubes, Melissa, Chuang, Kelley, Sicherer, Mati, & Sicherer, Scott H. (2012).  Child & parental reports of bullying in a consecutive sample of children with food allergy.  Pediatrics 131:1, Jan. 1 2013, pp. e10-e17, doi: 10.1542/peds.2012-1180


*As an aside, the word "nonfunctional" here seems problematic.  "Functionality" seems very much in the eyes of the beholder, especially when dealing with people who have communication disabilities who may not be able to explain why they engage in these routines.  I personally doubt that any human being, whatever their level of ability, acts for no reason.  We all have needs and goals, whether or not we know what they are, and any species whose members acted for no reason would die out.