Coemgen writes:
It is perhaps somewhat indicative of how well I have absorbed the lessons society teaches us about what constitutes “normal” behaviour that most people have a difficult time understanding that I am autistic.
Indeed, most people with whom I interact but am not close to probably would never know that am neurodiverse. Most would consider me eccentric, nerdy, geeky, creepy, or weird. But, I’m not, really. Well, OK, yeah, I can be a bit odd, but that’s not because I am an odd person.
I am autistic. I was diagnosed several years ago, the summer before my freshman year of high school. It has been a long, and often arduous, journey since then. A major problem which I face and grapple with daily is self-acceptance. Though, thankfully, I never was put through autistic therapy, almost all the books I read and help I got assumed that the way I relate to and interact with the world is wrong and needs to be fixed. The overriding narrative is that autistics need to learn how to act neurotypical.
And I have gotten pretty good at passing for normal. Generally, I am just seen as quirky, someone who marches to the beat of his own drum.
But that is not the case. I am not quirky. I have a developmental disorder.
Over the past couple months I have been struggling a lot to accept that I am who I am, and trying to force myself to interact with the world in a “normal” way not only doesn’t work long term, it is actually harmful to me. And I am learning in many ways to return to my childhood coping mechanisms, which by and large are actually helpful ways of dealing with sensory processing issues, as well as the usual problems with social interaction, learning environments, and interpersonal relationships and communications.
For example, I keep Silly Putty with me. While I’m in class, I play with it and the physical activity helps me deal with the distractions of the lights and noises and smells that make it hard to focus on the work I’m doing. This was something I’d learned when I was still in elementary school. Similarly, I am doing more and more of the physical motions that help me to be calm and focus on the singing and prayers in church services, and things like hand flapping and tapping and vocal stimming as I just go about my day. I’m learning more and more about myself, and I want to continue to do so.
The one thing that I keep running up against is fear that in doing this I am making thing hard for my friends here at school. I know, in my head, intellectually, that it’s OK to do these things, so long as I’m not disturbing class or church. But for so long the story I was told and kept repeating to myself was that doing these things is embarrassing for everyone around me and my constant task is to stop doing those thing and just be “normal.” So it’s very hard, and I have to constantly remind myself that it is OK to be autistic. It is who I am, and if I were to be “cured” (were that even possible) I would cease to be the person that my friends love.
And if there’s one thing I know for certain, it is that my friends love me and are supportive of me. For someone who is so nervous and paranoid about relationships as I am, having people in my life who I know are there to help me and are OK with me learning to be me is perhaps the most important thing in my life.
Which reminds me, probably the person who did the most for prodding and challenging me into beginning to learn to be actually self-accepting about being autistic is my fellow blogger here, who first showed me the “Ask An Autistic” videos on YouTube by Amethyst Schaber. Thanks for being my best friend!
Seminarian’s Wife writes:
I think this idea of "passing" as a normal or neurotypical person is a bit of a double-edged sword. On the one hand, you probably don't want to have to explain your behaviors to every person who you come in contact with. But on the other, if people know what to expect then they can react accordingly.
For example, in class I would find it very distracting if the person next to me was rocking back and forth. That person should have the right to rock if it helps him/her concentrate. But I should also have the right to be in a distraction-free environment in school. If I don't know why the person is rocking, I may be annoyed, or ask the person to stop rocking and be still. But if I know that Sam is Autistic and rocking helps Sam concentrate, then I can make the decision to move to a seat where the rocking won't distract me from my task.
I would say that the same thing applies to moving around in church. There's a responsibility on both sides here. If someone moves away from you, your responsibility would be to assume that there's nothing personal there and understand that what helps you might be a hindrance to them. And they have the responsibility to assume that you aren't doing it to be a jerk, and to put themselves where your movements aren't going to be a distraction. I think that the Orthodox church is a good one to be in for this. Movement is perfectly ordinary, whether it's the quiet hand movements of someone using a prayer rope, or walking around to light a candle or venerate an icon, or picking up a baby and rocking it.
(Going to go off-topic for a moment here. I wrote the word "hinderance" above and then it was corrected to "hindrance". Does that word really only have 2 syllables? I have been saying it wrong my whole life?!)
There's something to be said for being an ambassador, even a reluctant ambassador. Sometimes Autistic behaviors are embarrassing for other people. But that's true of really *anything* that's different. Our brains are wired to pick up on things that are not our normal. But as we see those things repeatedly, they become normal. The child who is vocally stimming in the supermarket grabs our attention today, tomorrow we hear that child and think "oh that's the Autistic child", and the next day we don't even notice it.
Coemgen writes:
First and most important of all, it is, in fact, “hín-drance,” according to the Oxford English Dictionary, but English is as English does. As far as I can tell, in practice it’s about half-and-half on the number of syllables. So, no, you haven’t been saying it wrong.
Respect and responsibility are important here. I am trying to continue to grow in self-discovery and self-acceptance, and working with myself to be better rather than fight myself. But this doesn’t give me license to just do whatever and excuse it all be saying “I’m autistic!” If I want others to respect me and be accepting of me, then I need to go and do likewise. So, to use your examples, I don’t rock or hand-flap in class, but use silly-putty; this is because I know that it would be not only distracting, but disturbing. The same goes for what I do while in church.
I think the distinction between distracting versus disturbing is an important one to bear in mind. This would apply to other things in church, like children running around and babies crying. I would consider that being distracted by something is, by and large, my problem, and something that I need to deal with (though perhaps, in some situations, the best way to deal with it would be a calm, gentle talk with the distracting person). If, however, someone is disturbing the service, then a different approach is called for.
A part of the problem for me is, as always, figuring out what is and what isn’t distracting or disturbing for others. When I am focused on trying to enter into the service or prayer time, which often means doing some sort of stimming, it’s hard to keep track of who is and who isn’t reacting to what I’m doing. I don’t feel compelled to “pass” just in order to keep everyone
comfortable; I won’t go out of my way to be disturbing, but I will do
whatever I need to to be present to the service, or the class, or
whatever. Of course, if someone says something to me, I will do what I can to not be a distraction to them; but part of me does think that the problem lies with a lack of understanding about what, exactly, it is that I am doing.
So I do find myself, at least in present circumstances, as being something of an unwilling ambassador for neurodiversity. Perhaps this affects my choices about what behaviour I engage in, but I think it’s important to try to help others to understand what I and so many people are going through, and to strive for great acceptance and affirmation. If nothing else, I would like to encourage greater knowledge about neurodiversity, and let people know that forcing us to have to “pass” is not acceptable, and certainly not Christian behaviour.
