I was on a site that strongly believes in the harm inherent in technology, especially for kids. Kids have ADHD, developmental delay, poor motor skills, and green fur growing from their ears, all because of technology overuse. And there are articles and studies and sneaky photos of kids and teens glued to their screens while at a restaurant with family! They would rather play with their friends across a screen than in the same room. As adults, we’re going to have a world where no one can converse, no one can solve problems, no one has the dexterity to sign their own name.
Even though I know that autistic people are not in the majority, I still want to stand up and say, “Hey now, you’ve got it all wrong!” when I read those things. But I was not diagnosed until college, so I would have been counted as one of those tech-ruined kids. From the time I got my AIM screen name in 4th grade, I asked my mom to please get one, please go on there, please type with me from the upstairs computer? She asked why, when I could talk to her right here… because! Because I want to tell you things−that was all I could say. I had little social connection at school, and when I met a new person, I could not say a word. I met my classmates by chatting online, kids in my school and even my classes, kids I would not look up or speak to when they said hello. The shocking thing? None of them minded. I was nice and a really good student, happy to help with homework and listen to teen drama I never experienced myself. That technology gave me access to a world I could not leave my own head to experience in person because it was so full of endless communication demands and the sensory overload of crowded halls, ringing bells, weird smells, echoes in the gym…
I was finally diagnosed at 21, and the friend (my only friend in college) who initially mentioned autism was also the first one who strongly encouraged me to type, even from the same room. In the process of being evaluated and diagnosed, we also had fun reading the books and blogs of others on the spectrum, and some of them also talked about typing as a much more fluent way to communicate for them. That made me feel validated, and that was the time when I started to believe in my typing as a good thing that no one should try to take from me…Something I would even fight to be allowed to do. This is my world, too, to access as best I can however I can.
I can say words just fine, and really, the amount of words I say is a problem because it’s too many more than not enough. But lots of words can still mean no real communication. It took us ten years of daily cat-related scripts for me to ever type to my mom all the emotions behind the words. It doesn’t help anyone help me when I say, “My back hurts or my stomach is upset,” and that’s something I say a lot, that’s something I feel a lot…but other bodies don’t mix up their signals quite like that, so it’s hard for anyone to know what I’m feeling. I tend to give way too much background information or else I start and the person asks what on earth I’m talking about because I missed the crucial bit. I’m too loud, except when I’m too quiet and no one can hear me. I truly can’t hear my volume. In sensory chaos, my sentences lose their structure and end up a smashed up series of words that sort of, somehow work if you know me but otherwise won’t mean much. Sometimes, I just say, “Forget it−too much work,” not even worth it to try.
Even the most fluent of speaking sounds like it’s based in rigid thinking–YESPLEASE and NOTHANKYOU! It makes people think my brain is also that rigid, because no one realizes that there might be a disconnect between thinking and speaking. Even though in my mind, I see almost endless nuance and spend a lot of time thinking about it. I often sound like I’m snapping at someone who tries to help but is really making it more difficult, but I’m not frustrated with the person, as it sounds like I am−I’m frustrated with my brain.
So, when I had services and my typing was discouraged because she can talk!…I pushed back. It never became fully accepted, as the professional world seems stuck on the looking normal thing and much less concerned about the happy, healthy human thing. I no longer have those services, and there is little pressure on me now. I type or speak as I need to do either. I often take typed-ahead thoughts to appointments. I email my family and sometimes send them parts of my writing. I even say, “I’ll send you something later.” I accept that speaking words will always be in flux from day to day, place to place, year to year. I know what I want to say but suddenly having it stuck in my brain but not able to get to my mouth. My mouth doesn’t know the words, even though my brain knows what I think. My brain doesn’t think in words on its own−it feels things instead, even numbers and opinions and everything else−so getting things to words can be hard. Instead of getting upset by it, I’ve worked on being able to say “hold on, I know it” so the person knows to wait and that it’s a processing hiccup.
Next time you go out to dinner and see a kid glued to an iPad or a young adult glued to a phone, remember that I look exactly like that and that it does hurt when someone judges me without any understanding (like when I dropped a goofy-looking fidget on the pew in front of me as we stood up in church and the older gentlemen gave me a doozy of a glance when he found it under his tush upon sitting down). Without that device, I would spend dinner hiding in the bathroom to avoid the crowd and noise. Without it, the day would end after that meal because I’d be completely done. I might have a surge in my migraine (which is rarely gone but some days much worse than others) but have no way to say it, and when it gets bad, I hit my head because nothing else works. I could be upset and have my music or purring app playing. I could be frustrated and talking through it with an autistic friend in another state. I could be anxious and going through the photos of my cat. I play audiobooks all night to minimize the sound of my medical pumps. I listen to music so I can sleep in the ER. I use my device to take breaks without having to leave the group or event, which is one of the greatest things it does for me.
We all make judgments, and some are based in reality. But the reality of a whole population is not the same as assuming that reality to be the case when you see a stranger doing something you think is wrong. I still find things my family has completely wrong about me, because my behavior often looks like one thing but means another. I hardly think a stranger will know what they see. My job is to manage myself–and I’m doing just fine with a fantastic life and the security of knowing that I can make my real self understood much more easily than ever before. No “help” needed, thank you. But a fair few may want to look inside and do a little cleaning up of those judgments so easily, loudly, publicly thrown around.
[Tweet “My behavior often looks like one thing but means another #AutisticSpeaks #PenfriendProject”]
As for the site that set me off on this topic I come back to time and again…I know they’re not talking about me, about autistic people, about devices used for communication…but a lot of the uses they list bump into those needs, things like watching a movie in a restaurant, that autistic kids and adults do to be able to be in those settings. As loudly as they are shouting their concerns about technology, they should include something on their site about its benefits and its ability to change lives. As it is, it’s only teaching people that there are hundreds of reasons to hate it but none to appreciate it. It’s not about games−it gives me a voice−not a mouth, sounds, and words to say but a unified understanding of self with nuanced perspectives and the ability to have friends who really know me and to show compassion as I support others. That is something everyone deserves but many still lack, and no one should be without it because of a quest for less technology. If anything, many of us need more of it.