For example, it’s not the science inherent in the existence of firearms that kills people, people kill people.. but if I lived in a town where a sizeable enough amount of people thought I shouldn’t exist to ease “my suffering” or me being a burden or whatever and were willing to shot me to deal with it, I would probably be rather steadfastly against these people owning firearms. In the same way, as an autistic person pre-natal screening for ASD’s terrifies me and I will continue to oppose is with every fibre of my being.
Does this sound paranoid? You state that autism “does not seem like something that would cause that pressure to form” .. really? Are you aware that there’s material out there comparing autism to cancer, saying how an autistic child will ruin your life and your marriage (!?) and throwing terms like “soulless” around and that this is coming from “the World’s largest autism advocacy organisation” for goodness sake. You really think this wouldn’t have a distorting impact on people’s reproductive decisions, really?” —
This is exactly what I think. I like the post but wish it had been spellchecked. People would take it more seriously if it was neat.
I got a better internship than most. I have an office, a computer, a desk, a gargoyle. The Arc of Georgia is a good organization. Unlike many interns, I am expected to think. I mind the Facebook page and write for it. Now my boss wants to know what I learned. She wants something like an article for Facebook. I figured out how to do a mail merge and cajole the printer into spitting out envelopes. I learned that an envelope-wetting tool is a good investment. That was a painful lesson. I doubt this is what she wants. I have some truer things to list. I hope they will be satisfactory.
Those of you who know me understand I always try to find the right answers. I read somewhere that the average adult lies three times a day. I tell fewer falsehoods. They tie my head in knots, run counter to my nature’s grain. Instead, I compartmentalize. I give people what of me they want, what I think they can handle. I break my life into bite-sized pieces, one for everyone. I often tell the truth, rarely the whole truth. These days, I am starting to try. I hope she finds it acceptable.
I got in from a three-hour sousaphone rehearsal. The wifi was out. That meant a trip to the diner. I hope someone eventually takes my order. Coffee would do me good. The mild chill of this rainy night is sinking into my bones. My lips are bloodied and torn. I want to sulk.
How can I stay at Agnes Scott and its enforced, incessant intimacy? I am autistic, introverted, misanthropic. If I transfer, how do I explain? Is the Emory autism conference going to stay civil? I plan to tell my story. Not everyone likes that. The truth is too complex to fit a political agenda. How do I cope with that story now that I know most of it? Now I recall when the Larkin seen by the outside world was nothing more than normality lessons in crude practice. The true I, that is cool under pressure, hates umbrellas, and thinks gargoyles have a place in home decor, tried to get out. I could not lift one of my own fingers, say one of my own words. The instrument that saved me is a deal with the devil. How do I let my family know me without drawing them in? They never asked for a daughter who works with impossible things. Can the real Larkin walk through their door without tracking in the dust of dark places?
Angst time is over. I need sleep. Being me is not all bad. I should enjoy the privaleges before passing out. The Malleus Maleficarum can be my bedtime story. Nothing I read is going to make the nightmares worse.
I gained a follower recently that isn’t a fake account; I feel happy! :D
@-sabbathchick-, if you like old people bands, plants, and ranting by a eccentric, you’re going to love the shit out of this blog.
Autism Speaks makes my hair stand on end. When Dani inspired me to become less judgemental and a better Christian, I knew their forum was the place to go.
The site is structurally different from other forums. Tightly-controlled and with odd quoting rules, the only stickied thread is called “Dreams for Our Children.” That struck me. They dream for their children. In how many of their households is it allowable for the children to have dreams of their own?
I learned whose child is doing well, whose is not, who wants a cure, who needs help. Their handles, pseudonyms like ”koolaid” and “vaccineskill,” filled me with the imagery of lives so shattered that reasonable people had come to believe unreasonable things. I may be the only person on the forum who uses a real, full name and is open about where I live. Why not? My card is all over Atlanta. Everyone from wealthy, Decatur neighbors to homeless denizens of Little Five Points have my number. I have no privacy to protect. Everyday creeps respond well to a firm “no.” I am too young, obscure, unimportant, itinerant, and poor to attract the attention of credible threats. If the shadowy hand of big pharma exists, it has no reason to pull me under.
They claim to speak as or for autism. My voice is my own. The spectrum is so wide and diverse that I would never dare speak for anyone else. I know parents struggle but care more about the children. Life is hard. Adults are supposed to muddle through as best they can. I agree with them that they should recieve more help than they do, but their upper echelon could set a better example for keeping kids out of the ideological crossfire. I spoke to them as equals. I reminded them that even the most beneficial change costs, to pick their battles with the care that comes from knowing they may be chipping away pieces of another person’s soul every time they ask a kid to be more normal. I implored them to do everything they could to make their children aware of their unconditional love. Then, something happened.
“Zonk,” like the Dunesburry character, started attacking parents on the forum. We seem to have a lot in common. Zonk is an aspie, smart, well-read, articulate, and generally anti-cure. Whatever his age, he is young in the worst sense of the word, boy* enough to miss the distinction between fighting wrong and tormenting a mother who has been up until two with a crying child. I could almost see him, a fifteen- or sixteen-year-old kid with plenty of strong opinions and no experience meeting daily struggles with grand, philosophical arguments, judging what he cannot understand.
A familiar, powerful impulse began to glow like hot coals in the pit of my stomach. If Zonk said one more word to these frightened, desperate people, I was going to unchain the hellhound of my vocabulary. The goal was a blow to his adolescent self-esteem he would recount at dinner parties twenty years hence. One more word and I would send him to his room for an evening of crying and listening to emo music in the dark. I was ready to lash out at someone like me on behalf of members of an organization I view with enmity. That may be the most Christian thing to ever skim the murky surface of my mind. It has also had my head in knots for well over a week.
*or possibly girl
A group in Jacksonville is trying to start a thirty-two acre “planned community” for people with disabilities. You can read about it here:
It gets worse. Medicaid discourages congregate housing. It prevents people from living productive, meaningful lives in the communities. It leads to isolation. Abuse often goes unreported. Injuries and even deaths are swept under the rug. Therefore, Medicaid no longer funds these settings. This group trying to get the rule changed. They risk opening the floodgates for the creation of more such facilities. Please take the link below and leave a comment expressing your disapproval of modern-day segregation.
My plan for the afternoon, besides cleaning, gear repair, and phone calls, is to sign up for the autism speaks forums. I want to see if they really will ban me just for self-identifying. Dani has been making me think lately. I need to work harder at the loving my enemies component of my religion. I plan to try to get to know some.
The lady from Emory autism finally emailed me. She wants me on a panel. Even though I am of age and live away from home during the school year, she wanted parental permission and involvement. She and Mom have been in touch for months. I expressed annoyance. She was chipper. I may write back tomorrow and ask the good doctor what she was thinking.
A school makes students wear backpacks at all hours of the day and night. These deliver a powerful shock to wearers. Staff members have the controllers. Students are zapped whenever a staff member sees fit. It happens up to thirty times a day, which averages out to more than once an hour. The UN calls it torture and asks the U.S. government to look into it. Finally, the head and founder retires in disgrace. Tried for an incident involving adolescents strapped to boards, the head and founder gets five years of probation for destroying evidence of his crime. Why can Dr. Israel live out his days somewhere other than prison? His victims have disabilities.
I could hear music, a pop song called Beat It. It doesn’t matter who’s wrong or right/ Just beat it!” I quoted in my head. The crowd was growing, getting concentrated. People saw my shirt, with the Autism Speaks puzzle piece turned orange. It was blazoned with “cure closed-mindedness.” A circle with a five foot radius opened around me. We rounded a curve and saw an open field covered in tents. There were children everywhere. Some had balloons. What are their parents teaching them? I thought. Everyone I saw seemed neurotypical. Whole families were arrayed in shirts with a child’s name on it. I saw a team of six or seven labeled “For Zach.” Zach was nowhere to be seen.
I was the only person in the crowd whose shoulders were never brushed. The radius of empty space broadened to ten feet. I walked to the heart of a crowd of something more personal than ideological foes four digits strong and growing. The weight of their glares was palpable. It pressed as they continued to back away. I remember thinking most of them probably think the world would be better off without me. I tried not to let it reach the logical conclusion: most attendees would think the world was one freak better if I dropped dead.
I was doubly conspicuous. Autism Speaks members often encounter protesters, but they had probably never seen anything like me before. I was carrying a placard with contact information and an offer to get coffee with anyone who wants rational discourse with someone who has a different perspective. So far, there are no takers. At least no lawyers have been in touch about the parody shirt. They have sued people younger and poorer.