“Be special someplace else”

Learning the social norms of public spaces, including how to interact with the variety of people you’ll meet there, is generally part of our upbringing.  My most vivid memory from before age 5 is this: walking through the dairy aisle of a grocery store with my mom, looking around, and suddenly having her grab me and hiss that I needed to stop staring. I was baffled. Staring at what? She furiously told me, “Those people are our neighbors and they’re dwarves and it’s rude to stare.” That’s when it clicked that she was talking about a short woman and her shorter son nearby, who hadn’t previously registered in my consciousness as unusual in any way. My face burned red with confusion and embarrassment (and decades as a high self-monitor ensued).

Perhaps that’s why I found this Slate essay by the mother of an autistic teenager so interesting. She cites a couple of recent examples of public behavioral conflict involving an autistic man and a child with Down’s syndrome and writes about her own challenges. Do other patrons have a right to quiet enjoyment of a meal when there is an excited autistic child nearby?  Does the family of that autistic child have a right to have dinner in a restaurant without being hidden in the back?

Amy S.F. Lutz says this:

As anyone who’s ever parented young children knows, there are two ways of sharing: taking turns or using something together. Turn-taking seems to be particularly in vogue of late, at least when it comes to autistic people in the community: Zoos, amusement parks, bowling alleys, roller skating rinks, movie theaters and purveyors of just about any type of entertainment imaginable are setting aside time particularly for individuals with autism and their families. These are fabulous programs that allow autistic children to have fun and try new activities. They also take the pressure off parents…  Philosophically, however, it bothers me: What are my children, and my friend’s children, learning about the place of the disabled in the community?

It’s an excellent question. Let me turn it to another example that may be more personal for many of us: At the university, I have had a couple of classes with a young woman with an autism spectrum disorder. The first days were the most difficult as the professor and other students learned to expect her outbursts, lack of restraint, and her harsh tone of voice. She’s very smart and often insightful, but her behavior is disruptive and has an effect on everyone in the room. Weeks into the semester, frustrated groans and awkward laughter could still be heard from distant rows whenever she blurted out a random comment. (To their credit, both professors I observed in this situation did an excellent job of trying to manage her outbursts firmly but appreciatively and to encourage the rest of the students to participate.) What should our expectations be? Are the other students learning a free lesson in tolerance and acceptance? Does the autistic student’s right to participate in the classroom take precedence over the rights of the other students, who are paying the same tuition for the class?

These aren’t new questions, and our attitudes now may be more accepting, but I don’t think we’ve reached a consensus about what is fair — or at least best, if not fair — for everyone.

One thought on ““Be special someplace else”

  1. There is no easy answer to the types of questions that come up in this argument. I AM a parent of an autistic child and everyday is… Wow. Everyone telling me what they think my son should be, what he should do, act, socialize as. Strangers in the grocery store, library, bank, even his own school (the audacity of the last one is a constant frustration to me).My son is what is rudely called ‘passing’ this is a label put on the PDD or Asberger’s end of the spectrum. To outsiders our children appear visually not to be autistic but children with uncontrolled ADD, bad parenting with no boundaries, out of control children or emotionally immature children. They don’t have the same visual cues as children on the other end of the spectrum (ASD is Autism SPECTRUM Disorder as it encompasses levels and variations of autism i.e. some people catch all and say low, mid, and high functioning). This creates an interesting double standard within the autism community that not all parents are comfortable about-with each other. I know parents who have more severe ends of the spectrum so how can I complain around them about the grocery store when it is practically impossible for them to take there children sometimes. But another mother with the same level in the spectrum we talk openly about the odd double standard our kids have-yet their autism is ‘better’. If one of our friends take their child to the store and has an autistic meltdown people have a social tendency to politely ignore, offer help if need be, (yes of course there are rude jerks but those are everywhere no matter who or what level you are) but the lack of nastiness seems to not be there. The mother that I am friends with (our sons are also friends one PDD the other Asberger) we ‘gripe’ about the double standard that we get. Our children are autistic too but no one can tell, so when we get the same melt downs, flailing (for those that don’t know what a flail is… its when a child’s body becomes immediately limp in protest and falls to the ground and won’t stiffen back up to stand), break down of tears, inaudible complaints, or hitting me… Out comes the accusations, the nasty social advice, the ‘medicate your child’ bad children, lack of self-control speeches. When I was a younger mother more than once an incident could leave me tears from the ignorant comments observers made. Parents on the higher end of the spectrum have to build a different kind of ‘social thick skin’ then parents of children on the lower end, but the ability to comment on the double standard is not there because of the possibility of retorts like ‘I would take the nastiness if it meant my child’s autism wasn’t as extreme’. Our complaints sound insensitive to a parent dealing with more severe symptoms. Yet amoungst ourselves we openly talk about our ‘different skin’.
    For my son’s birthday last year I invited his friends, ASD -full spectrum, down syndrome, an children with no diagnoses ‘normal’. Even amoungst ‘family’ all of us from the same church, all the diagnoses and issues known to everyone in attendance, my friend became embarrassed when her son melted down. She almost took him home, even amoungst friends she was in tears. We were a safe environment and even with us the dread of reaction that normal situations invoke had patterned onto her to become emotionally distressed and breakdown when he reacted in public. She had given herself a conditioned self-censorship of her son’s actions through what she assumed were in everyone’s mind based off of comments said from previous incidents with strangers. I pulled her back, showed her no one was was even noticing or taking heed to her son’s outbursts, let her laugh and cry on my shoulder and convinced her to stay. He could have a dozen more outbursts and no one would care. It was a rare safe social encounter with no outside judgments. This is not normally the case though with our kids, to have these rare social situations where no one comments, because no one cares, and everyone knows whats going on.
    Nowadays…. oh is my skin tough. Catch me on a stressful off day though-I’ve been known to berate a person in public down to 2 inches and leave them pink in the face embarrassed. No, its not the mature thing to do, but I did say those were my off days. 😉

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