This post is inspired by #BADD2017, Blogging against disablism day.
What if your style of communication was always pathologized?
This thought started while listening to an “inclusive” (well, usually pretty inclusive) chat about accessibility related things. A few parents to children with disabilities were talking about communication difficulties. One of the people talking had an autistic child, and he kept talking about how tragic it was, and how he was hoping to outlive his said disabled offspring. Another parent mentioned some of the usual communication barriers she had noticed between those with trisomy 21 (aka Down syndrome) when compared to the “standard” communication style, that is how you neurotypicals communicate.
X (the child, in this case an adult with trisomy 21) could describe something in a long and descriptive way. The mother described her frustration; why wouldn’t she just get to the point faster? Maybe X simply does not know how to describe everything in a way you neurotypicals do. Whether it is about some bodily functionality, physiological pain, feelings, emotions, you name it. I would not be surprised if alexithymia, the inability to name specific emotions and feelings, is a common trait also with that spectrum. With some of us, it is very common. And can be awkward. The autistic kid of the other parent, let’s call them Y, also doesn’t do the NT communication very well. Words used matter, and there seemed to be no good communication tool that would work for them out there. They found some cool AAC app, and fortunately these days if someone is always staring at their phone screen, that isn’t seen as a social disaster, unlike 10 years ago. Both of the parents seemed happy about that, and while they tried to focus on the positive sides and all the accessibility related tools out there, that left me feeling quite excluded. So there a small tweet chain about it.
I once again realized how differently wired and sensing I am, and how sometimes it turns to invisible struggles. I grew up with correctable sight issues, so I learned to do what others did, and at least as a kid it seemed to suffice. With sight corrected, I learned to rely on it, adding to some more sensory issues. I can only guess which senses are wired to be more sensitive and which less than the average, but light hurts, I can’t turn off hearing and can’t tune out many of the sounds I hear either. I can hear frequencies many others can’t, and can confirm that has had bad consequences in many situations. I can’t unhear what people say (and have a good memory). I can’t focus on something with background sounds; something that neurotypicals like my stepsister and her boyfriend have apparently no issues with. They put on noise like TV, then start talking over it. I want the noise gone, and them gone, and all perception of light gone. Even one night of that is too much. I’m sensitive to many smells, but at least I don’t get sensory overload migraines as frequently as I did as a child. While my mother (who also was on the spectrum) hated all added perfumes in everything, I hate the chemical smell of cleaning products and hospital-y smelling personal care products. I crave for things to have a nice scent, whether it’s a shampoo or a dishwashing liquid. I want to be able to tell things apart from just the scent. My skin has always been towards the sensitive side; many materials itch. Seams itch. Tags on clothing itches, and good luck imagining the sensory hell of finding a bra that fits, does not itch, does not have seams or wires or padding or lace… every single sense is affected, including proprioception. While neurotypicals look others in the eyes when they talk or listen, and look for their facial expressions, and (I assume subconsciously and with not effort needed) can read and communicate the emotional subtleties in people’s “tone” of voice, those are all abstracts that I’ve learned from books.
It’s all like listening to and speaking in a foreign nonverbal language. Which of course it also is, since I didn’t grow up here… but it affects me everywhere, and in some countries my variance from the neurotypical towards pure autistic is much more an issue than in some countries. I studied body language and facial expressions from books in high school, and since that always tried to analyze people from that knowledge. It’s always at least 10% of brain power set to deciphering and troubleshooting others when interacting with people in person, with unknown people much more so than those I know better. Yes, I always do that, since it’s the best way to find when you make some errors. Except of course, despite knowing what expressions look like in books, I never really was good in seeing people’s faces. Everyone looks the same, and now obviously everyone’s face is a blank (or dark) canvas where there is nothing but fog. So now that energy is devoted to trying to decipher that tone of voice thing. What I mostly focus on, and mostly hear, when listening to people though, are the actual words they use when they speak. This apparently is also very different from how neurotypicals communicate. It could explain why most people lie so often (the details of their stories contradict to what they’ve said earlier, the details change and so on). It’s like they talk for the sake of talking, and have a fuzzy memory or also like rounding up details to make themselves sound better. I don’t quite understand why anyone would want to rely on using a tone of voice to communicate something when they could just choose their words better. But I’ve learned that I have to apply a much more emotional sounding tone than I would want to, when talking to strangers, just because neurotypicals want it that way.
Based on just the sensory differences there are quite a few things that I do in interpersonal communication that is not like the neurotypicals prefer. I don’t naturally use the “tone”, but I try to remember to fake it for them. I tend to keep to blankface expression, which in USA seems perceived negatively. Women are always expected to be smiling or passively smiling and pleasing. Also people, again especially women, are always expected to use pleasant facial expressions, again what I read on books… I fail again. Because as I don’t see your facial expressions or body language, why would I use mine? It would be one-sided, you could see me and I would not see you. Working on this… it’ll take a while.
In the real life, with all that book knowledge, I can fake it to a big degree. And I do. I look at the direction of the persons speaking or the directions of where the people listening are. I know what kind of body language you find open and neutral, but I don’t usually switch between the different body language cultures. I don’t do American body language. I fake the tone thing. And all those details of faking always get it wrong at some point.
So what if… instead of always focusing on how the autistic or other disabled people do the interpersonal communication wrong, we would live even for just a day where your neurotypical communication methods were wrong, and were pathologized? Try to imagine it.
As a neurotypical person, you might be naturally inclined to…
- Call people, instead of texting or facebooking or emailing them, especially for private communication. You use the excuse that you can communicate so much faster and more effectively, and completely fail to consider how interruptive your calls may be. You interrupt the other person from whatever they were doing, such as work, then go on with your unrelated small talk. If you wanted some details, you could have more efficiently just emailed or texted to ask for those. Also, if you call and then still need the person to email or send you the details of what you were calling about, why did you call in the first place? You could have emailed and got the information directly. Also why is it that some of you insist on talking with your voice when you could just type or email? Do you love hearing your own voice speak so much?
- Use a lot of eye contact while speaking and listening. Babies and infants naturally do this, until they get teached that staring at people and things is rude. Your excuse is assuming that you can then read the emotional status of the person you are looking at, not considering that when in public, people don’t necessarily have natural facial expressions, as it’s all part of trained of what you are supposed to look like. Maybe if you focused on what they were saying you’d be more efficient
- Assume that everyone always uses that famous “tone of voice” thing when communicating. I don’t really get it. Must be one of those things that you neurotypicals are just wired to do differently, but it would be great if you didn’t always assume everyone else functions like you.
- Use language in fashionable ways and cultivate expressions in your speech and writing. And instead of creating your own expressions, you keep using the same old expressions that have been used by everyone else, for no good reason
- Smalltalk. That seems like an odd behavior that you neurotypicals love engaging in, especially with strangers. So many of you seem unable to tolerate quietness or silence. It’s pathological really.
So what if your speaking, using constant eye contact, an emotionally expressive voice and small talk weren’t just how the whole world rolled? What if you were the odd one, sticking out as much as people with reversed preferences do now. You would try your best to keep quiet and enjoy silence, to avert your eyes, to sound less emotional, yet some people could still find out your shameful secret easily? You… sound neurotypical. I know it must be so hard for you people. I work with some neurotypicals, you seem quite a mild case compared to some of them. You can email and type and aren’t constantly talking like them…
Your child has been diagnosed as neurotypical? How tragic…