Back to School Mule-Style

I scooped Peter’s litter box, read my Lonely Planet Turkey and Central Asia books, and cuddled Peter before my dad picked me up and took me to Warrensburg. He gave me his presents, a Native American flute and a build-your-own ocarina kit, and I opened Mom’s, a Leadville, Colorado shirt, and Uncle Todd’s, Aunt Laura’s, Abby’s, and Eric’s, a book on paper art and an ecofriendly sketchbook. Then Dad and I ate at Crazy Dog’s before he took me to UCM, and we got all unpacked. After that, I got my room all organized. Then I made another bracelet from leather, as I had promised to make every day before the silent auction for the Autistic Self-Advocacy Network of Kansas City. I also did some more of my word search from Colorado. I went to the mandatory floor meeting where we introduced ourselves, and told everyone our major, hometown, and hoe old we were. When it was my turn I said, “My name is Ben Edwards, I’m from Mission Hills, my major is Cultural Studies, and I’m twenty-five years old, which I just turned today.”

             Right away, everyone started clapping and singing, “Happy birthday to you.”

Mardy and I filled out our roommate agreement form. Then we went to the Mule Kick-off where I saw my friend from middle school and friend on the autism spectrum Ian Sneid, I talked to him and during that time I learned he was living in South Yeater hall, and I told him about the group.

             “Anyway, if you want to come, you’re welcome to,” I told him.

             “I’ll think about it,” he said.

I also met Paige there, a new THRIVE student with Down syndrome. Mardy and I then went to the THRIVE hall and met Blair, another new THRIVE student with Down syndrome, and hung out with her, Mary, her roommate, and Jade. Afterwards we went to see The Secret Life of Walter Mitty on the lawn of the Central Baptist Student Union.

The next day I had breakfast with a new student in Ellis who is getting to know new people here.  Then I read over some more of my Lonely Planet Turkey book. Afterwards I had lunch with some people from my hall. I also went to the library where I saw several birthday wishes for me on my Facebook page. To show my autistic pride, I changed my Facebook name from ‘Ben Edwards’ to ‘Ben Edwards Au’ in reference to the chemical symbol for gold, which are the first two letters in ‘autistic,’ prompting members of the autistic community to launch “Light it Up Gold,” as opposed to Autism Speaks’ medical autism model based Light it Up Blue, and for many autistics on Facebook, including several of my autistic Facebook friends to add Au to the ends of their names to.  It would take sixty days for the change to take effect. Then I ate dinner with the people on my hall including Drake, a tall dark young man with a crew cut; Alex, a tall black man; Josiah with dark spikey hair; Cameron, a short dark-haired girl; and Sara with bright shoulder-length blond hair. I got back and talked to Granddad, who liked my idea for the Facebook name, thinking it was a good idea just like my porcupine picture. Then I went to the hypnotist with people from my hall where I go to know several of them.  After I got back, I went down to Break Time and got some beers.

The next day began both my Anthropology of Food class and my American Renaissance class. Before my Creative Problem-Solving class, which started fifteen minutes after the latter of the two other classes finished, Hillary texted me saying she needed help finding her two o’clock class, which took place right across the hall from my American Renaissance class, so I waited for her near the Rec Center and took her back up to that hall to help her find her class with five minutes left until my next class started, making it there just in time. After I got out of class I got out of class and bought a new poster of Albert Einstein and a print of Andy Warhol, two individuals reputed to be autistic. I got back and spent some time with Hillary and Mardy before running on the treadmill for half an hour, trying not to start at my usual time of about an hour after three whole months without running. I got back and got a birthday card and check from my grandmother. Then I hung out with Hillary and Mardy.  Hillary left temporarily to take care of some business, during which time I made another bracelet. Hillary got back and she, Mardy, and I hung out, sharing a beer with them and going down to Break Time to get some ice cream with them, during which time we agreed to walk together for a bit of time every day, and I got some more Altoids.

The next day I went down to the Ward Edwards building and got my laptop registered with the UCM wi-fi. Then I deleted several of my old e-mails and sorted them a little bit.  Afterwards I went to help Hillary get her printer set up. Later I got two new prints, a print of Andy Warhol’s depiction of Marilyn Monroe and a print of Johnny Deep from one of his films, both of these individuals having been believed to be autistic. Then I got back and turned two of the now empty printer cartridges from Hillary’s printer into paper weights one with a Jesus drawing and the other of Muhammad Ali and started on one of Mother Teresa. After that I went to dinner with my hall where I almost think I spotted Jess checking me out. I got back and finished my paper weight depicting Mother Teresa, and then did another one depicting Gandhi. After that I ran on the treadmill for forty minutes. I got back and talked to Dad. Then I got a call from Mom saying my tuition had been paid. Afterwards I went to the library and checked out Ralph Waldo Emerson’s Nature for my America Renaissance class, and some Lonely Planet books on Kenya and Tanzania.

The next day I read a lot of Nature after my Anthropology of Food class while drinking some coffee. After my last class I went to the Union computer lab where I happened to run into Maria, who said she saw my blogs and Facebook page during the summer and thought they were very interesting. I also learned she was living in East Ellis and was no longer working as a CA. I sat next to her in the lab while I took the syllabus quiz for my Creative Problem-Solving class and e-mailed a list of textbooks I need to my dad. I got back to Ellis where I had dinner with people from my hall. After dinner I made another bracelet. Then I worked more on making Facebook pages for my blogs.  After that I ran on the treadmill for about an hour while I read more of Buddhist Boot Camp, which taught me about how power self-talk is, like when I think I cannot change the world for autistics with Autism Speaks in the way. I got back and started teaching myself Arabic from the Rumi book I got. Then I went to Break Time where I got some more beers and Doritos.

The next morning, I ate breakfast with Shay, Alex, and Anna, during which Anna asked me about the group and said she was the new THRIVE student organization president and the organization would call me about speaking to them about my group. I went to an appointment with Barbara Mayfield, the Autism Spectrum Support Group advisor from the Office of Accessibility Services. During the meeting, we thought we would ask Tom, an Autism Spectrum Support Group member and THRIVE student who was the only one to come to most of our meeting last year, to be our vice president, especially as it may attract some THRIVE students. I of course also made another bracelet. The next day I had breakfast with Anna and dinner with my hall. I also finished reading Buddhist Boot Camp.  After that I went down to Hasting’s for the first time in a while and got the current issue of Sufi magazine, Nobel: A Century of Prize Winners, a new translation of The Art of War, and Tai Chi Classics. Then I went to Walgreen’s and got some shampoo and a notebook for my Creative Problem-Solving class. After that I went to Crazy Dog’s and got a new bottle cap for my collection from my drink. 

The next morning, I had breakfast with Jess and several other people from my hall and in Ellis. After that I went down to the sheltered workshop, where I saw some hay barrels that I had never noticed before on my way, picking up several recyclables and repurposables along the way and recycling all the recyclables I brought and found two new bottle caps for my collection, and on my way back I picked up and recycled more recyclables and found more repurposables. Then I made another bracelet. I also had dinner with people from my hall. After that I went to Crazy Dog’s where I got two new bottle caps for my collection and realized twelve reasons why people at UCM might not be coming to the Autism Spectrum Support Group meetings:

1.       They aren’t willing to admit they are autistic.

2.       They’re worried how other people will react or view them if they find out they’re at an autism group.

3.       They don’t want others to know they’re autistic.

4.       They don’t like the idea of being in a group that is autism-based.

5.       They’re used to social rejection.

6.       They’re used to social isolation.

7.       They have some lack of social skills

8.       They don’t know anyone at the group.

9.       They don’t know anyone at school.

10.   They don’t have their parents for backup in this social situation.

11.   Unlike in community colleges, the people who might shun them for being in an autism group are always living near them.

12.   They’re worried about how this group may portray autistics, having seen material from various professionals and groups like Autism Speaks portraying autism as a weakness.

13.   They are so embroiled in their special interests, and don’t want to leave them behind.

After thinking of this, I realized the solution may be to pair people up in twos several times instead of one as we had done earlier at UCM, each time with different people, though I then remembered doing it with several people at JCCC. That way they could get to know people there and make friends more easily and have another reason to come to the group and meet people who share their interests. Later I got a call from Hillary asking me for some help with her Composition I homework, and she came up here and I helped her write the paper.

On Monday morning I read several more pages of The Art of War. After that I went to the bank and got some quarters. Then I found out where my Cinematography class is. After that I e-mailed my dad the name of the textbook I would need for my Cinematography class. I also went down to the Union bookstore and found out they were out of Selected Works that I needed for my American Renaissance class. I got back to the dorm and went to the front desk to get some envelopes and stamps, where I saw Anna and Brittany, but found out they didn’t have envelopes, so I went down to the packing store to get a stamp and an envelope. I got back and worked on drawing the front of a Thank You note for my grandmother for her birthday check, since I didn’t have an actual card to send. Then I drank some coffee while I read a lot of the reading for my American Renaissance class, which gave me an appreciation for nature writing myself. 

Later I went to my Cinematography class, where I learned about how in classic Cinematography, shadows will be cast in darker scenes, and powerful people might be in the center of the frame, while less powerful people might be to the left, and I thought this class could really reawaken my appreciation for film. Our first assignment was to take two photographs of an object, one from a normal angle, and one from a more unusual angle, to show how angles influenced the mood of the picture. After I got back and ate dinner, I tried frantically to get onto the Autistic Self-Advocacy Network-KC’s Google Hangout for the meeting, but after trying for over half an hour to get on, Hillary got Josh and he tried to help me get on for almost twenty minutes until we found out I hadn’t gotten the invitation to the meeting by mistake. After that I ran on the treadmill to try and relax, while reading more of The Art of War. I got back and talked to Tyler after he called until I insisted that I was exhausted and stressed, and I needed to go. I got back and helped Hillary with her Composition I homework. After that I made another bracelet. Then I got several of my textbooks in the mail, along with a birthday card from my Uncle John, Aunt Nini, and cousins Scott and Tim.

                The next day I ran into my old friend Antwon from last year as I was heading to class, and we caught up a bit and I got his number and planned to text him mine and see him later. I read more of my Creative Problem-Solving book and realized a lot of the strategies for businesses it mentioned paralleled The Art of War’s philosophy. After my last class I got back and finished my thank you note for my grandmother. Then I went to dinner with my hall and Chic Filet, where Josh assured me the difficulties I was experiencing over the conference would be resolved. After that I got some more beers (or rather hard cider) at one of the gas stations. I got back and heard back from Teigan and we got it so I was able to help out at the JCCC Autism Across the Life Span Conference. I also made another bracelet.  As I was walking to the Rec Center I ran into Sara holding a dog on a leash standing next to a short stocky man in a bright red shirt. She smiled and said, “Hey, Ben. How are you?”

                “Good, how are you?”

                “Good, just walking my dog,” she said breathing heavily.

                “That’s good,” I said. “Well, I’ll see you around.”

                “Bye,” she said smiling.

                I saw her again as I was going down the stairwell to Late Night, she was walking up. I said hello and she said, “Hey, Ben. What are you doing?”

                “Just going down to Late Night.”

                “That’s cool. Just relaxing?”

                “Yeah.”

                “That’s good. Well, have a good night.”

                The next day I met with Barbara Mayfield, the Autism Spectrum Support Group advisor from UCM’s Office of Accessibility Services about the group. I told her my theories on why people weren’t showing up to the group, and she agreed I could be right about them. During that time, we came up with the idea to plan activities for after our pair-up sessions, get together THRIVE students for activities to help get them into the group, and to meet with the THRIVE staff to help that happen and to get THRIVE students involved. I said sure, and he told me they would probably get together to practice sometime soon. I went to the Lovinger computer lab and worked on putting a presentation together for Disability Awareness Week, when I got a call from the bookstore saying they had the textbook I needed, and I could come down and get it. I went down there and got it and a fine-tipped sharpie and my arabesque origami box. Then I went down to the packing store, where I ended up getting eight new stamps for my collection along with two envelopes. As I left the Union, I ended up going back to walk with Hillary and Mardy to the bank. I got back and mailed my letter to my grandmother. Then I finished my arabesque box. After that I went to dinner with my hall, sitting next to Jess there, and got the idea to make another bottle cap sign that says “Wake up,” and to carve some of my wooden blocks into a box (for myself). I then made another bracelet for the Silent Auction. After that I talked to my granddad.

                After my first class the next day I went to the library and checked out an edition of Walden. I got to the cafeteria and read a lot of it. Later Mardy and I agreed to ride home the next day together for Labor Day weekend. I went down to Late Night again that night trying to relax and ran into Sara and her friend Cameron.

                “Hey, Ben, how are you doing?” Sara asked me.

                “I’m good, and you?”

                “Oh, I’m doing pretty good,” she said sighing and nodding her head.

                “That’s good, and how are you?” I said to Cameron.

                “I’m good,” she said.

                “Well, I’ll see you later, Ben,” said Sara.

                The next day Mardy and I drove home together. I got home and turned several straws into beads. Then I decided to turn all my straws from now on into lampshades and started doing it. Afterwards I read a little bit of my Lonely Planet Germany book while I petted Peter. Then my mom, Dave, and I went to Elsa’s and celebrated my birthday where I told them about school and looking for the right girl, and she said if I keep my mind open to all possibilities, something will happen. When we got back, I made another bracelet while waiting for everyone to be ready to celebrate my birthday dinner. We celebrated it with triple layered chocolate caramel cake with vanilla and caramel cone ice cream while I got four new shirts, including a Mount Washington shirt and a salmon Winnipesauke shirt, as well as a book called The Uprooted: The Epic Stories of Great Migrations that Made the American People.

Seven Days of Summer

The day after I got back from Colorado, I scooped up Peter’s litter box before eating dinner with my dad and Cam. I showed them the bracelet I made, and they both said they should sell really well.  When I got back, I worked on my bottle cap snake before going down to Starbuck’s, as I had so much this summer. I made another bracelet when I got home, making it my resolution to make one bracelet a day before the silent auction. I told my granddad about the bracelets, and he too said they should sell really well.

                The next day I went to Starbuck’s and read more of Water Touching Stone. After that I found out Build-a-Bear Workshop ended their partnership with Autism Speaks. Then I made another autism awareness leather bracelet. My dad met us to take us to the lake and I gave him the belt I made in Colorado for Father’s Day. We got to the lake house and then went to the market and got some beers, from which I got three new bottle caps to repurpose. We met my grandparents, and they liked my belt, snake, and bracelets, and Cam said he had some bottle caps for me. Then I worked on my letter to Alpha Xi Delta asking them to end their partnership with Autism Speaks too. 

                My granddad suggested that they could be sold for ten dollars apiece, which my dad agreed with. My granddad and I also agreed to go to a labyrinth on Thursday with my grandmom in place of the Pathless Land on Wednesday, as well as Winstead’s and then Barnes and Noble. Then we went to the Canoe Club. I got back and found the bottle caps Cam had for me, as well as two new Snapple caps for my collection. Then I worked on my bottle cap snake. After that, I drove Cam around the block so he could show me how his car worked, as I had not driven it before.

                The next day I went to my art class where I was fairly satisfied with my progress on Mom and Dave’s painting of Leadville, and Donna asked me to e-mail her to keep in touch. I went into the village and saw Nick from my old high school who I learned is taking CLEAR classes at JCCC and has a girlfriend, and we exchanged numbers. Then I went to Starbuck’s, where I got an idea for how to stitch my Kool Aid pouch wallet together and read more of Water Touching Stone. I got back and spent the rest of the day stitching my wallet together, taking a break to make another bracelet.

                I continued stitching it together until nearly two in the morning. After meditating, eating, and showering, I finished stitching my wallet in the next seven hours. Afterwards I made two more coasters from receipts for the silent auction. Then I went down to Starbuck’s and read more of Water Touching Stone. I got back and talked to my granddad who suggested I pick out $50 worth of things from Barnes and Noble, and I got the idea while talking to him to make a coffee sleeve from old t-shit scraps tonight to see how much I could make when I’m away at school. I also made another bracelet.

                The next day I made another bracelet, as was my pledge, and later got a new bottle cap for my collection from my drink I got at Better Cheddar. Soon after that I went to see a glass labyrinth at the Nelson Atkins Museum of Art. My grandmom was sick that day, and unable to make it. We walked through the Nelson, and then got outside and found the labyrinth. As I walked through it, it felt so uplifting and mesmerizing, and I came out feeling almost completely different than before. My granddad was amazed that I didn’t run into walls as he and my grandmom had before. Later we went to Winstead’s, and then to Barnes and Noble, where he gave me fifty dollars to get anything I wanted there. As I was going in, I got a call from Tyler and told him I would have to call him back later as I was celebrating my birthday. I ended up getting a book called Rumi: 53 Secrets from the Tavern of Love and a CD by Nigerian artist/revolutionary Fela Kuti called Fela: The Best of the Black President 2. Afterwards I felt incredibly tired.

                “It’s partially from working on my letter to Alpha Xi Delta,” I said.

                “Well, you poured your heart out,” said my granddad.

                “When I get home,” I said. “I’m just gonna rest.”

                “What about calling Tyler?” my granddad asked.

                Sure enough I called Tyler when I got home before getting some rest that I very much needed. The next day I went to my art class for one last time for a while before going to Starbuck’s and reading more of Water Touching Stone. I also got another new bottle cap I got from a drink I bought at Better Cheddar. Again, I made another bracelet. The next day went very much the same, getting two new bottle caps, making a bracelet, going to Starbuck’s and reading Water Touching Stone. So did the next day except that day I had dinner with my dad at Minsky’s before going down to Better Cheddar again, and then finding a new bottle cap near the glass recycling bin in Prairie Village. Then I got home and packed up my stuff for the next day.

 

Autistic Advocacy and Relaxation: Our Second Vacation in Colorado

On the first day of August, I finished packing my clothes before we drove off to Colorado.  As we drove there, I worked on my letter to Alpha Xi Delta about their support of Autism Speaks, then my travel plans to Kyrgyzstan and Tajikistan, and then my letter some more. I realized as I read my Lonely Planet books on the region about how these port cities in western India were probably how Buddhism spread to Sri Lanka and Southeast Asia, just as the Silk Road allowed Buddhism to spread to China, and at one point, the Mauryan Empire must have been the center of a global Buddhist community. I drove on the highway for about an hour we munched on McDonald’s. Then I worked on my letter, then my Art of War for the Autistic Advocate, and then my letter some more. We went to Whole Food’s where I helped with the shopping before we ate dinner from their salad bar, from which I had some delicious jerk chicken, and got a new bottle cap for my collection. Then we drove on while I continued working on my letter, until we finally arrived at our cabin.

Soon after I got up the next day I trimmed and sprayed the dandelions and grass growing between the planks on our front porch. Then Dave and I went to Safeway where I found several bottle caps to use for my snake and other projects, got a new bottle cap from my drink there, and found a new bottle cap for my collection in the front of Safeway, that is if I can get it back into the shape it was in before. I got back and messaged Teigan about the JCCC Autism Across the Life Span Conference, asking her if the Autistic Self-Advocacy Network of Kansas City would like to participate in it. I also did a few more changes to my letter to Alpha Xi Delta.

We went to the Boon Festival in Leadville where I enjoyed a delicious meal of hot wings and chips, while I heard Teigan respond that they would love to participate though they will need as much information about it as possible. Dave and I then went to a bar where we tried shots of whisky and Cowboy Coffee. We bought some kettle corn and then went to see Paula Poundstone perform in the Tabor Opera House. On the way back we saw a deer. After that I got back and added some of the finishing touches to my letter. Then I made another coaster from receipts, while I thought about Autism Speaks stranglehold over the conversation on autism, but then remembered Winston Churchill’s quote, “When you think you are going through hell, keep going.”

           The next day cut and sprayed some dandelions for my mom and Dave. Then we went to the Boon Festival where I enjoyed a brisket sandwich and chips and then bought a Peruvian flute and shaker at one stand and a hand drum at another and picked up and recycled several recyclables. I got back and made several flowers and beads from straws I found on the ground. Then I practiced my flute for half an hour and sort of invented a new slightly different fingering notation that worked better for me. 

I made three more coasters from receipts and during dinner, the subject of Autism Speaks came up between my mom and I and to my intense relief, she said she agreed with what I thought of them, though she said she thought I ought to get my message across in a way that wasn’t angry, which was fair enough. I also told her about my letter to Alpha Xi Delta and she said she thought I should do that. I then finished two more coasters. I realized I must have been quite helpful to the autistic struggle by getting all these autistic people together at JCCC; a lot of good can come about when autistic people get together; look at the Silicon Valley. I also realized that it was probably people with disabilities who first conceived the idea that racism and other sorts of inequality stem from our society's intolerance of difference, thus helping to quash racism, and helping our society to pay it forward with ethnic minorities, proving that disabled people are not simply economic burdens or charity cases as some think they are. The next day I communicated a message from Sean about the JCCC Autism Conference to Teigan. Afterwards I made three more receipt coasters and started on five more.

The next morning, I had a dream that I saw the citadel of Minas Tirith, only it looked much different in my dream than it did in real life, but I realized that. After that I wrote in my dream journal, during which time I realized that in my dreams, I’ve realized things are different than they are in reality. Then I delivered a message from Teigan to Sean. Later I started on eight more receipt coasters. I went into town and bought six more Native American postcards and a crotchet needle. I got back and finished two more receipt coasters. The next morning, I combined several receipt coasters into two more coasters afterwards. Then I sprayed some dandelions for Mom. After that I helped plant some grass.

After that I took a walk along the tracks where I took several more photos and was inspired to do more photography. I got back and worked on my letter to Alpha Xi Delta. Later I went into town and got a fish fossil to frame and hang on a wall at a mineral store and a crossword puzzle book at the bookstore. Then I went to a coffee shop and got a two-scooped cone of dark chocolate chip ice cream and an Orangina, from which I got a new non-crown bottle cap for my collection and ate and drank them while I worked on my crossword puzzle book. After that I went to the antique store and bought two more Native American postcards. Then I went to another coffee shop and had a lemon crumb bar while I did some more work on my crossword puzzle book. After that my mom, Dave, and I ate at the Grill where I got my mom to agree to send my pocketknife home in the mail. Soon after we got home, Dave’s mother and sister Brenda arrived at our cabin. The five of us went on a train ride the next day up the mountains where we were given a guided tour of the area. I got several pictures on my way back, and before we went home, we went to the taco truck, where again, I got a new bottle cap from my drink. Later I sanded the back door frame for my mom and collected some firewood, before walking down the tracks and going to the old warehouse and collecting some green, red, and gold leather, which looked almost red, yellow, and blue, to make braided leather autism awareness bracelets for the silent auction. I made one for myself and soon afterwards ate dinner with my mom, Dave, Brenda, and Mrs. Dingley. I told them all about my coasters and what they were for, and Mrs. Dingley suggested making a video showing how to make them, so people would be more likely to pay the price for them after seeing all the hard work involved in them. I also enjoyed talking to Brenda, who was a major travel enthusiast herself, about my own travel plans to places such as Tibet, Turkey, and Central Asia, and was amazed at how much she knew about the regions herself. 

                The next day, my mom took me to the shuttle car that would be my first ride on the way to the airport, giving me a bag that had a present for my upcoming birthday. My grandparents would pick me up at the airport and bring me back home. I got on the shuttle car that led to the next one, tipping the driver and getting on the next ride. I tipped the next driver after I got to the airport and tipped the driver again, before getting through security and soon learned my flight would be half an hour late. I called my grandparents to let them know. Soon afterwards, my flight boarded, and I made it to Kansas City, and was picked up by my grandparents. They took me to get a meal a Winstead’s through the drive-through, and then I made it home and made another leather bracelet. I called work to ask them when I worked next. They said I didn’t have any hours that week, but I figured that was ok, because in the next week, I would be going back to UCM.

 

 

 

 

 

 

 

 

 

 

 

The Working Man and the Autistic Porcupine Movement

            The day I spoke at the panel for adults with autism was over, and the end of July was approaching. That day I went to Starbuck’s and read Water Touching Stone some more. I also learned that Nantucket Nectars, a drink I got on my breaks so frequently at Hen House because I liked to collect their different bottle caps, which all had facts about the island of Nantucket, was sponsoring the group Autism Speaks, which I and many other autistics and allies disfavor for their budget which went mostly towards genetic research of autistics, ads, which often do things like equate having an autistic child to being struck by lightning, and six-figure salaries for their executives, not to mention having not a single autistic in their board or general membership since their last openly autistic employee John Elder Robison resigned after Autism Speaks cofounder Suzanne Wright made a speech at George Washington University where she basically claimed autistics to be burdens on families and societies. On hearing this I decided I would no longer buy Nantucket on my breaks at work until they stopped their sponsorship. AS, I believed, makes it hard for real autistics to raise their own voices to fight autism discrimination. The next day I worked for eight-and-a-half hours as I had done before getting a new Sweet Leaf Tea bottle cap, which had different sayings called “Grannyisms,” for my collection from my drink on my first break, and two different USDA caps, which all had either six-word memoirs or quotes from famous individuals, on my lunch and last break. I worked the next night from 4 to 9:30, and the next night from 4 to 7, getting a new USDA cap for my collection from my drink with my dinner at the end of my shift. The next day however, my mom told me that we leave for Colorado on the first of August, when I was supposed to work from 4 to 7, so when I got to work, I asked my coworker James if he would be willing to trade shifts with me. I learned he worked the next day from 10:30 to 7, so I agreed to trade shifts with him then, so I would be able to go to Colorado. On my first break I got a new Sweet Leaf Tea cap, as with my lunch and second break, but during the latter, something happened that grabbed my attention. I looked at the Wikipedia page of the sorority Alpha Xi Delta, trying to learn something about their support of the organization Autism Speaks. Unfortunately, what I read about AXD was absolutely disgusting to me. Apparently, “Sisters ‘raise awareness’ in various ways, including passing out blue ribbons, placing advertisements in campus and local newspapers, distributing information in the community and appearing on local television programs to educate people about autism.”

                So AXD helped spread Autism Speaks’ poisonous ideas too, did they? They would spread ideas that were hateful to autistics and alienate those on their campuses? I could not think. I did not believe they respected autistic people at all. I remembered being invited to a college friend to the Tau Kappa Epsilon fraternities local chapter, and after the others thought I was someone they liked, they gave me a bid for membership, which I declined to focus on starting the Autism Spectrum Support Group for UCM. But I doubted that had I been an openly and happily autistic woman at AXD’s Rush Week that they would have been so fair to me. We could of course protest their walks, as had happened in Columbus, Ohio, though I felt with an irresistible jolt of anger, that like with our brothers and sisters in Columbus, the women of AXD would probably give us the “F@#! you!” along with hurling at us sandwiches and drinks that had happened everywhere we had protested. I had seen these sort of girls in my life too much already. We (the autistic community) had to boycott them in some way, but how?  Had we not exhausted all our methods as we who disliked AS were also boycotting other companies that sponsored them, such as Joe’s Crab Shack and Home Depot? Perhaps, I thought, the early American colonists stood up to the British by driving on the right side of the road, as a opposed the Brits, who drove on the left, and called biscuits cookies; perhaps we could do the same thing?

                I went to dinner at Panera with Cam and my dad after work, my mind still occupied with AXD’s complicity in Autism Speaks’ harmful acts. I got home and learned one of AXD’s symbols was a golden feather quill, symbolizing, “the pen being mightier than the sword,” while their mascot was a teddy bear, the BetXi Bear; what would be the opposite of that? I looked up “opposite of teddy bear,” and found several answers including an asteroid and a porcupine, the opposite of cute, soft, and cuddly. That didn’t do it for me. I think vainly, “Maybe a Schwinn bicycle, they are not made by kids in factories in China?”

                At last, I called my granddad and told him my concern.  

                “I understand, but I, think you should write a letter to them and maybe get other people to write letters to them because I think you could get your ideas across," he said.

                “Ok,” I said. 

                “And remember, you can do a lot more for the autism community than just criticize Autism Speaks.”

  “Thank you.  You came through for me when I needed it.”

                “That’s what I here for.”

                After I hung up, I decided to make my “Boycott Alpha Xi Delta” symbol a porcupine anyway.  Porcupine was the name of a town in Second Life where several autistic rights activists gathered. And I looked up “porcupine symbolism” and learned that in Zen martial arts it is associated with being aware of one’s surroundings and defense without being aggressive. I thought, that sounds like us autistics. We don’t want to be aggressive; we just want to live our lives. Also, for its size, a porcupine is very able to defend itself against larger creatures, including a bear, or a BetXi Bear for that matter, just as autistic people can defend their rights even as a minority group. What’s more, porcupines may not be cuddly, just as many autistic people don’t like to be hugged, but that doesn’t mean they’re less important to this world or this ecosystem. I also read that porcupines symbolize leisure and storytelling. That makes sense I thought, because porcupines provide us with quills, like for writing, poetry, and calligraphy practiced by East Asian warriors, just as AXD has their feather quill. It made a very good symbol for autism in general, I thought. So, I went ahead and did it: I changed my Facebook album cover to a porcupine, and saw that within the first twenty minutes, it had already gotten three likes, one from Barbara Mayfield and my grandmom. Feeling satisfied, I retired from autism work for the day.

The next day went very much the way Sunday did. On my first break I found out I got a Facebook message from Sean Swindler, my advisor at the JCCC Autism Spectrum Support Group, asking me if the Autistic Self-Advocacy Network of Kansas City would like to participate in JCCC’s Autism Across the Life Span Conference on October 24-25. I told him we would be glad to. I realized that what my granddad said was true: I could do a lot more for autism than just criticize Autism Speaks. Later I got two more USDA caps during my lunch and second break, and soon after I got home, I packed to go to Colorado the next day.

 

 

A Week of Advocacy

Monday the 21^st had come and it was the day of the July meeting of the Autistic Self-Advocacy Network of Kansas City. Before I went, my mom told me the directions to the Plaza Library where it was taking place. I got there safely, remembering to call my mom to tell her when I did, and waited outside the room we were meeting at until it started. Soon a tall woman with dark hair arrived and stood outside the room with me, and then a young man, slightly shorter than me with straw-colored hair. We went in and sat down, and then a young woman with blonde hair and glasses arrived, followed by another young man. Soon, our director Teigan Hockman arrived, followed by a man with dark hair and thick-framed glasses, the former with completely dark hair save for a green ponytail in the back. Then another young woman with shoulder-length dark hair arrived. Then another man with thin blond hair arrived.

                At last, when we decided everyone who was coming was here, Teigan suggested we introduce ourselves. She began, saying she went to Penn Valley Community College, and started the Kansas City branch of the Autistic Self-Advocacy Network. Then the man next to her introduced himself as Marshall Edwards, the husband of Teigan and self-diagnosed as having Asperger syndrome. Then the young man I had seen outside in the hall introduced himself as Skyler and twenty-five years old, with Asperger syndrome and ADHD. The woman I saw in the hall introduced herself as Pam, saying she was self-diagnosed as having Asperger syndrome. The dark-haired woman introduced herself as Wendy and said she was a student in the organization Disableds in Higher Education. Finally, I introduced myself saying I was Ben Edwards, and I am twenty-four years with autism, I go to the University of Central Missouri where I run a student group for students with autism, and I have two autism-related blogs.

                “Wow!” said Teigan. “Well, we know you’re busy when you’re at school, but we’ve been trying to get you to come here for a while.”

                The blonde women introduced herself as an artist with autism, and the other man, her boyfriend, introduced himself. Then the last man introduced himself as a man with Asperger syndrome who was a board member of the Autism Society Heartland. Soon we got our on-line Facebook chat going.

                “Oh, good, Elizabeth’s on,” Teigan said.

                Finally, our meeting started, and Teigan began, “Well, for this meeting we have three main things on our agenda, but first I want to tell anyone who’s unfamiliar about our group. We are a response to groups we who we feel do not really represent autism, such as Autism Speaks. They recently made a documentary called Sounding the Alarm, which had so many hateful messages about autistics, saying they’d rather have no children than an autistic child, or that having an autistic child is a living hell, or calling this new wave of autism an autism tsunami.”

                The others stirred.

                “That sounds like a roller coaster ride,” said the ASH board member. “Come ride the Autism Tsunami.”

                “And the group only donates four percent of its money to services for people with autism,” said Teigan.

                “Actually, this year it was only three,” said the board member.”

                “Three, four, what’s the difference to them,” said Teigan.

                “Anyway,” she continued, “We are a non-judgmental group, so if you want to walk around, stand up, or flap your hands, we accept that.  And normally we don’t clap our hands, because a lot of autistic people find that hard to deal with. Instead, we do this.”

She raised her hands in the air and shook them, very much like the pictures I had seen associate with a publication for stories, writings, and articles by people with autism, the Hands Loud Project, by our main chapter. 

 “So,” said Teigan, “Our first order of business is that we want to show a screening of a documentary called Citizen Autistic, and it deals with the autistic self-advocacy movement, but we need to raise the money to show it. I was thinking we could have a silent auction. I could sell some of my art and Marshall was planning on selling some of his comic books that he wrote.”

                “I have some art that I could sell,” said Wendy.

                “I have some art,” said the woman on my left.

                “I have these coasters that our made from receipts folded up and taped and glued together that I could make,” I said. 

                “Oh, like that paper art,” Teigan asked.

                “Yes.”

                “Ok. Are there any other ideas beside a silent auction?”

                “I could give some dance lessons,” said Wendy. 

                “We could show movies about autism,” said the blonde woman. “There’s Loving Lampposts.”

                “Yeah, and there’s Wretches and Jabblers,” said Teigan.

                “So,” Teigan went on after we had finished discussing ways to raise money, “Next, I wanted to go around and hear everyone’s thoughts on the group, because I feel that why I started this chapter, this isn’t all about me. I want to hear from all of you guys.”

                That was exactly what I thought all the years as I had founded two student organizations for students with autism. Marshall, Skyler, Pam, and Wendy all said their thoughts as we went around. They tended to talk about how they were self-diagnosed and how they thought it was important what the ASAN was doing. Finally, we got to me, and I said, “Well, have any of you heard of the Facebook page Boycott Autism Speaks?” I asked.

                Teigan nodded.

                “Well, they’re now taking art, photos, poetry, and pictures of people holding up signs in protest of Autism Speaks and wanted to let people know that in case they wanted to send any. I’ve also thought that a good way to protest Autism Speaks would be to put duct tape over our mouths with the Autism Speaks puzzle piece, to symbolize how Autism Speaks silences people.”

                “I like that idea,” said Teigan. “I’ll write that down, but I just thought I’d let everyone know that while that is good, we are not one of those organizations that chains ourselves to posts, although you can do that if you want.”

                “I also have been writing a letter to one of their sponsors the sorority Alpha Xi Delta, asking them to revoke their sponsorship of Autism Speaks. I think they probably don’t have autistic children like the owner of Home Depot and they may be more willing to listen to us, and I thought if anyone wanted to, they could take a look at the letter when I’m finished and give their input.”

                “We’ve tried writing to them before and they keep writing back to us saying, 'We think they’re doing great.' But the more we write to them, the more we chip away at their convictions.”

                “It’s happened before when we got Chili’s to drop their sponsorship for the National Autism Association,” said the Autism Society Heartland board member.

                “We have a message from Elizabeth,” said Teigan. “She asks, 'What else is our group about? Aren’t we about more than simply criticizing Autism Speaks?’”

                “Well,” I said, “While we do criticize Autism Speaks, that’s only part of something bigger. Our main goal is to create greater inclusion and acceptance of autistic people.”

                “That’s right,” said Teigan. “I’m going to write that down.” 

                At last, we got to the business of creating our website. “If anyone has anything to send us, like if they know of a sponsor of Autism Speaks, so we can let people know, or autism-friendly resources or professionals who can help many of our member s get diagnosed, we’d like that, and professionals like it to because it’s like a recommendation for them.”

                “Perhaps we could have something where we autistics tell our stories?” said the blonde woman.

                “Yeah, like The Autism Monologues.” said Teigan.

                As we left, the blonde woman said to me, “You took the words right out of my mouth when you said that we are about finding greater acceptance and inclusion for autistic people.

                I got home and updated my Facebook status saying I had my first Autistic Self-Advocacy Network meeting and that it went great. I told my granddad about it, and he was very excited. I unwound by working on my travel plans to Germany. The next morning, I found out my recent status got fifteen likes. That day I made five more coasters from receipts. I took a short break for breakfast and decided I could help my dream of being a translator by reading the introductions and gratitude of other translators to know I could go to for help. Then I spread mulch for Mom, swimming in the pool halfway through the work and afterwards. Cate got there that day to, and said to me, “Oh, Ben I have something for you.”

She reached into her suitcase and gave me a magazine on Buddhist traditions of India and Tibet. 

“I have a subscription to these as a member of the museum in New York and I get them every month.”               

“Well, thank you,” I said.

Then I went to Starbuck’s. I got back, after which Mom said I did a really great job on the mulch, and then I started making some more dream catchers. After dinner I talked to Dad, who was excited about the news of ASAN. I also decided to sell the dream catchers, for ten dollars apiece, the coasters for twenty-five dollars, both Mom’s idea, and the friendship bracelets for $2.50. Then I watched Wilfred with Mom, Dave, and Cate.

The next day I went to Winstead’s and then Barnes and Noble, where I got a Lonely Planet book in Central Asia, before going to the Pathless Land. Before we did our meditation, I told Ben about my receipt coasters and dream catchers and asked him if it would be alright if I told the group about them before we started the discussion group, and he said it would. The next morning at my art class, I told Donna about the silent auction, and she said she would be happy to donate one of her paintings to it.

“Really?!”

“Yes. It’s a good cause.”

            I got home and met with Mardy at Starbuck’s, and he agreed to bring a TV and a fridge (since his was bigger) for our room together next year, and I would bring the microwave. We got back and watched TV before he had to go home to great some family members coming into town. The next morning, while passing the time before I went to the Camp Encourage panel for adults with autism, reading my Lonely Planet Turkey book. I read a part on Turkey’s beloved founder, statesman, and revolutionary Ataturk (meaning “Father Turk”). Towards the end of the boxed text, I read after years of being a military man and reformer, he died a young age at age 57. Then a car pulled up to my driveway, which turned out to be Michelle Hass, there to give me a ride. We met and I thanked her for the ride, and we passed the time talking and sharing experiences and stories of ours. I got to the camp and met the other person on the panel, a blonde young man, named Eric. This time, Kelly told us, we would only be doing to panels with more groups together, so it would be less exhausting for us. We arranged chairs and the kids got in we began by introducing ourselves. I told them my name was Ben Edwards and I was twenty-four and a student at the University of Central Missouri who ran a group for students with autism and I had two blogs related to autism. Eric, I learned, was in community college and wished to become a zookeeper and was a counselor at the camp. At the end of the first panel, a camp board member approached me and introduced himself.

“Hi, Ben,” he said, “I heard you, and I thought you were just great. You are clearly very intelligent and articulate and a great advocate.” The second group came in, along with a young neurotypical counselor, who I recognized from last time. I found her nametag and saw that her name was Kayla. With each answer we gave, the children clapped, and Kayla looked at me, her eyes watered like the last time. The last question was, “What parting advice would you give these campers?”

                “I would say that some people would say that some of your 'special interests' as people with autism may not get you anywhere, that there might not be a demand for them, but there are several autistic people like Temple Grandin, Daniel Tammott, and others who had their special interests and they managed to make a career from them, so I would say that whatever your special interest is, go for it.” People clapped and several campers and counselors came up to me and asked me questions. “Do you enjoy being autistic?” “Did you ever use sign language?” “Were you ever completely non-verbal?”

                After I had answered all these questions, Kayla said to me, “Thanks for coming, Ben. You’re an inspiration.”

                “Thank you,” I said, and then asked her and Cassidy, “Do you two have Facebook?”

                “Yes,” said Kayla. “It’s Kayla Rodes. R-O-D-E-S.”

                “Cassidy Goodman. G-O-O-D-M-A-N.”

                Thank you,” I said.

                “And you’ll have to message me the address of your blogs,” said Kayla.

                “Definitely,” I said.

                I drove home with Michelle, thanking her for the ride, and relaxed, tired after an exhausting day. I managed to find Cassidy on Facebook, though for some reason, I couldn’t find Kayla, and decided to ask another counselor like Cassidy about it. After watching a bit of TV, a paced momentarily in the kitchen, remembering the Turkish leader Ataturk having died at the age of 57, wondering, half-seriously, if a similar fate wasn’t in store for me. 

A Long Expected Reunion

On a Friday, two days after I had given to both the Autistic Self-Advocacy Network and a memorial scholarship foundation for a deceased fellow UCM student, I drove down to my quarterly psychiatrist appointment. There I told my psychiatrist, Dr. Mays, about what I recently did for the two foundations and how it brought out feelings of sadness over the event, combined with the feeling of isolation from trying to find a girl who understood what autistic people like me had to go through, which he understood. I also got an e-mail from Kelly from Camp Encourage, asking if I would be able to participate in their next panel series of adults with autism, saying they could give me a ride. I said certainly, and she e-mailed me back saying that was great, and one of their counselors, Michelle Hass would pick me up. I called Tyler and arranged for us to sleep over tomorrow night. Then I called Hen House and found out I work on Sunday from 4-7. I called Erin and we agreed to get together soon. The next day I washed down a gliding porch for fifteen dollars. Tyler arrived for our sleepover, and we swam in the pool. We ordered Minsky’s pizza and I listened to an amazing song called Special Needs that Tyler showed me. He also taught me how to snap my fingers. We watched fifteen episodes of Mighty Morphing Power Rangers on Netflix, all the way back from the nineties before going to bed. 

                The next morning, I woke up to find Tyler standing next to me waiting for me to get up at around eight in the morning. Reluctantly, I got up and we watched three more episodes of Mighty Morphing Power Rangers before I fell asleep and woke up about half an hour later to hear Tyler tell me what happened. At his urging I jumped in the pool to “wake me up,” and we swam a little bit more before I we watched more of Mighty Morphing Power Rangers. Then we swam some more before Tyler’s dad came to pick him up. After taking a shower, I went down to Starbuck’s and read more of Water Touching Stone. I went to work and afterwards I got a new USDA cap from my drink I bought afterwards. I also worked on my trellises made from bottle rings and twist-ties. Then I put up my status on Facebook about going to the Autistic Self-Advocacy Network Kansas City meeting tomorrow night and got eight likes on it in one night.