Coming Out of the Autism Closet

The day after I got back to school, I went with Hillary to Hasting’s, where I got the book Tanaina Tales of Alaska about stories from the native Tanaina people of Alaska. I felt tired that night, feeling, more than ever, like I had aged from years of trying to advocate for autism. The next day after class was out, I went on the page through Facebook for the event Tell Dr. Phil and the Media that Issy Stapleton is the VICTIM, about a severely autistic girl Issy Stapleton, whose mother Kelli tried to murder her, rationalizing it by saying there “weren’t enough services” for her daughter. To try and get Dr. Phil not to sympathize with Kelli, I wrote:

Honoring a woman for trying to murder her autistic daughter is tantamount to genocide. If a woman was honored for trying to murder her gay son, what would that say about our attitudes towards homosexuals. Yes, autistics do suffer from discrimination, but murder is not the way families show sympathy for groups and individuals whose rights and dignity they respect. If we care about the crisis of autism discrimination, we need to raise attention to the issue without devaluing autistic lives. Issy's mother does not represent any mother or parent of an autistic child that I know, including autistics who you would call mild and severe. Let's not liken them to murderers, but show their sacrifice and courage to give their children the best life under the best and worst of circumstances, and in doing so let us give support to the millions of parents with autistic children facing the daunting task of nurturing them under discrimination and create a better, more hopeful world for autistics and their caregivers.

I also filled out the paperwork to reserve a room in the Union for the group, which I decided to call the Autistic Student and Peer Organization. That night I went to bed, so tired, feeling, more than ever, like I had aged from years of trying to advocate for autism, and wondering how I would find myself able to keep up with all my school work let alone the UCM autism group. The next day I went to my meeting with Barbara. I told her that I thought we needed to change the name of the Autism Spectrum Support Group to something different; something that made it sound less like the students in it were going there for help. She liked that idea. She also recommended we replace the old displays about autism in the OAS’s display case, and she said that there was a THRIVE student interning at the Muleskinner, who may be willing to interview us about the group, which would be an ideal way to put out that we are looking for peer mentors. 

I got back and saw Sara as I was going to return my books to the library. I then went to the library and returned my books, which were due that day. I got back and read more of my book for my American Renaissance class. On my way back, feeling that I did not have the time or the energy to walk down to the sheltered workshop to recycle my bottles, I called Hillary to ask her for a ride down there. She said she was unable to because she had an event to go to but said that Philip could give me a ride. I went upstairs and made another bracelet and started on another one. Then Philip drove me down to the sheltered workshop where I recycled my glass and his recyclables, found three more bottle caps for my collection, and collected his things to repurpose. I got back and Josiah gave me his receipts. I saw Sara coming back and forth and she smiled and blushed as she saw me, while I made another coaster for the silent auction and finished the one I started on. After that I finished the bracelet I started on earlier. 

I saw Sara going down to dinner and I went with her. She held the door open for me on the way down and I told her how I was making a bracelet every day until November. She asked me what that was for, and I told her it was for a silent auction for a group I was a part of. She asked me what group that was, and I said it was the Autistic Self-Advocacy Network. She said, “That’s cool.”

As we went into the dining hall, she told me where she was going to sit. After I sat down, she sat down with me. I learned then that she wasn’t on Facebook and that she loves The Lord of the Rings and The Hobbit movies. After we left, she told me she’s watched all The Lord of the Rings extended versions back-to-back taking over nine hours. As I got up, she held the door open for me again. About half an hour after that, I noticed the feeling of having aged that I was so accustomed to had lessened significantly.

Later I made another paracord bracelet to sell for the silent auction. Soon after that I talked to my granddad, and he agreed that it was a good idea to change the name of the UCM group. After that I worked on my final copy for my paper for my American Renaissance class. Then I went to Late Night with Hillary and Philip. After that we went down to Break Time and bought a twenty-pack of beer, for which Philip gave me the receipt for. I also got a paracord bracelet, which had a unique pattern that I thought I could do myself.  We got back and hung out with Hillary’s and Philip’s friends Tay and Kelsey. 

The next day I sat with Blair at breakfast, before finishing the final revisions for my Anthropology of Food class. After that class, I sat with Jade at lunch while enjoying a delicious spicy chicken burrito. Then I read a lot of the reading for my Anthropology of Food class. During that class, we talked about our author Fuller’s view of having children, a mother saying how her son has Asperger syndrome and learned to read encyclopedias at nine years old, and despite being neglected by the school system and having his rights infringed upon is no in his second semester of college. I thought about the idea that girls can’t be autistic because they don’t stick out, and I realized that point of view is not only misogynistic, but is also based on a strong belief in autistic stereotypes (girls being quiet, not flapping their arms, etc.)

After my last class, I went down to Those Were the Days and got eleven more postcards, thinking longingly of all of them being framed in groups and individually next to each other in my future home. Then I went to Hasting’s and saw that the seven military classics of Ancient China were heavily based on Taoist principles, and emphasized speed, stealth, flexibility, and a minimum of force, in contrast to the modern Western military strategies. I got The Seven Military Strategies of Ancient China as well as Love Poems from God: Twelve Sacred Voices from the East and West and Minecraft Essential Survival Guide, perhaps to help someday set up Minecraft activities in school, as the organization the Thinking Person’s Guide to Autism had suggested as a way to help school’s extracurricular activities be inclusive of autistic people. After that I ate dinner at King’s Chef Buffet. I got back and made another bracelet.

I went down to the Alcohol Trivia night and got several free things afterwards, which everyone, winners and losers (our team lost) got. Then I made another paracord bracelet. After that I talked to Dad and Granddad. Then I went down to Late Night. I soon felt too tired to really be able to help Hillary with her English Composition I homework, and then I saw her, and she said she was too tired to work on it too, so we agreed to do it next week. After that I sorted a lot of recycling on campus. I got back and saw a lot of Saving Silverman with Mardy, who was watching it on his computer, and I was reminded of how much I loved that movie, and the part where Neil Diamond plays one of his songs on his guitar at the end to get a couple back together reminded me of the power poets and songwriters have on the minds of people, not just generators of words.  

The next morning, I sat in the dining hall with Paige, Levi, Allyssa, a new THRIVE student who I meet, Anna, and Blair, who decided to sit next to me. Then I looked at my UCM e-mail account, but for some reason did not see any e-mail about the meeting plans for ASPO. I did get an e-mail from my Creative Problem-Solving teacher though saying I had left my notebook behind in class and could come by her office before five to pick it up. I also learned about haigu, paintings Japanese haiku poets used to make based off their haiku and decided to make some yarn paintings based off mine for the silent auction. Later I made three more paracord bracelets. I then went down to the bank and got some quarters to do laundry. After that I got my notebook that I had left behind in my Creative Problem-Solving class. I got back and did a food journal entry for my Anthropology of Food class.  Then I made another bracelet.  After that I made some more plarn for a belt for the silent auction. I later went down to the treadmill and started making another friendship bracelet and kept working on it when I got back to my dorm. I also realized that the screen on my phone won’t come on, due to a crack in it from a year earlier, and I need to go down to the Verizon store to get it fixed.

I had brunch with Paige, Amanda, a new THRIVE student who I met, and Haley, a blind student who I’ve seen around campus but never really talked to, while I worked on my bracelet from last night. Afterwards I worked on it some more. Then I went down to the Verizon store, where I called Mom and Dave, and left them a message about my phone situation. They told me at the store, however, that they wouldn’t be able to fix my phone, and the only place that could do that was the computer store in Warrensburg, which was closed on weekends. On my way back I picked up several more recyclables.

I got back and took out my recycling. Then I went to Those Were the Days and got some more embroidery floss.  I picked up and recycled some more recyclables on the way back. After that I worked on my bracelet some more.  I worked on it a bit at dinner, during which time I saw Kelsey, the THRIVE mentor, who told me they’d let me know when the THRIVE students will be working on the float and that they are using Mr. B’s trailer. She also liked the bracelet I was making. After that I borrowed Josh’s phone and talked to Mom, who said they ordered me a new phone thinking it was time for an upgrade anyway, which I could pick up the next day at the Verizon store. I worked on my bracelet some more after that. Then I ran on the treadmill for about an hour while making some more plarn for my belt for the silent auction. I got back and did my laundry while I worked on my bracelet some more, remembering how Mom always was glad there was the autistic community, so I would never feel alone. I also made another bracelet while I realized that if I did date an autistic girl, I might be able to appreciate her for her unique traits as a lover more than other guys would be able to do.

The next day I ate with Anna and Amanda while I worked on my bracelet. I got back to my dorm and worked on my bracelet some more. Then I went down to the Verizon store where I found out I had an order in my account, which would be completed by tonight, but until that time, they would not be able to give me my phone, which Mom explained via their work phone was because they ordered more gigabytes for all our phones. On my way back a car pulled up and the driver, a dark-haired female, called my name from the window. It was April, and she offered to give me a ride to wherever I needed to go. On the way back I told her a little bit about my arts and crafts and she how her brother made crafts for Boy Scouts, which they sold, and she shared with me some donuts, which she said she has because she works at a donut shop, and I enjoyed a delicious glaze donut and a banana-filled chocolate sprinkled donut. I got back and recycled some stuff I found along the way back. 

I went down to the dining hall, joined by April along the way, and learned she takes classes on Tuesdays and Thursdays, as she also works in Warrensburg. I also remembered that one thing ASAN does is help college students start campus organizations for autistic students. Then I went down to the library and found several books on Amos Bronson Alcott for my American Renaissance class. I picked them out and then started doing my paper. After that I checked out all those books. I got back and went to dinner, where I saw April sitting with a guy from school and joined them. I learned the man was Alex from my Anthropology of Food class, after he asked me how I enjoyed that class, and we enjoyed talking about classes, and I learned that April had Dr. Yelton for an Intro. to Anthropology class.

I got back to my dorm and made another bracelet. Then I continued working on the one I had been working on for the last two days. I ran on the treadmill for about an hour while I made some more plarn for my belt. I got back and finished making the bracelet I had been working on for the last two days and it looked great.  I also made some more plarn for my belt, while I realized that if my group gets going, I can be a resource for ASAN-KC and all of ASAN to help autistic college students start groups like mine at universities, and that if we educate individual Alpha Xi Delta chapter leaders on Autism Speaks, we can increase the likelihood that the issue will be brought up to the National Council. I also realized that the things we ASAN members make for the silent auction, like the stuff I make, will show the public how committed we ASAN members are to our cause when they see the hard work we’re willing to put into to them.

On Monday I went down to the Verizon store and got my new phone and the protection case.  On my way back I ran into Kriti and she gave me a ride. I got back and read the reading for my Cinematography class. I went to that class where I got ten out of ten on the quiz. Then I just starting feeling frustrated about my struggles to write a good haiku. After class I talked to Erin. I got back and heard Mardy say a guy named Alex was looking for me asking about homework, and I realized it must have been the guy from my Anthropology of Food class. Then I ran on the treadmill for about an hour while reading more of The Art of War. Then I saw Alex at Late Night and he asked if there was any homework due tomorrow, which I told him there wasn’t. I also read down there on my phone that a good haiku commented on something from ones daily life and who it related to life itself. 

I went down to Break Time and got some Doritos, and on my way back I thought about the goose I saw running in the streets of Warrensburg at night, and it reminded me of the saying “Not all who wander are lost.” And that spoke very true to me, like having love interests who are selfish and egotistical and ends up being like a siren to Greek mariners rather than a companion, but we find our way out, just like the goose managed to survive in the city with its cars and traffic. And in the same way, I am like the goose being an autistic in a neurotypical-dominated world. I remembered to that a few yards away, a flock of geese were quacking, as if they missed their member who was missing. Perhaps, I thought remembering how Teigan said they had tried to get me involved with ASAN-KC for a long time, I was the lost goose, and the others were ASAN-KC. Then I thought that goose would make a wonderful subject for a haiku. When I got back Hillary suggested we work on the journal entries another night this week, which was a relief to me. Soon after that I posted on Facebook the news about me good quiz results, to show life as an autistic in college. I also did write a haiku going:

A lone goose

wanders through the streets

in an urban environment.

Not exactly the traditional haiku structure, but oh well.

The next morning, I had breakfast with April. Then I read a lot of the reading for my Anthropology of Food class. After class I read a lot of the reading for my American Renaissance class, while I sat with Josiah. After my Creative Problem-Solving class I got myself a white chocolate blast at Jazzman’s as a reward for all my hard work. I also saw on Facebook that I had gotten a message from a woman named Katie Lindgren, who told me she was a literature teacher at Horizon Academy, and that my former teacher of mine, her colleague, Vicki Asher, referred her to me, saying I had started an autism group at Johnson County Community College. She and her class had just finished reading John Elder Robison’s book Look Me in the Eye about his life with Asperger syndrome, and they really connected to it. They also wanted someone to come talk to them about opportunities out there for adults with autism and wanted to know if I were able to come speak to her class about my transition from Horizon to adulthood. Realizing I don’t have classes on Fridays, I messaged her back saying I could speak to them next Friday. She responded saying that would be great. I realized how we the autistic community, I realized that, like any culture, the beliefs of us autistic people, both temporal and religious, have been shaped by our common experiences. 

That night I ended up missing dinner time in the dining hall. I made another bracelet and then a coaster, realizing afterwards that I needed to make three more coasters to have six sets. I soon came to realize that autism discrimination against females is basically another form of rape because without the right social skills, autistic females may rely on physical intimacy more to stay in a relationship and might not know how to assert their boundaries in such a capacity. I later made another friendship bracelet for the silent auction. Later I went down to Late Night and had a coke while I made a bracelet from plarn. Then I went to Break Time and got some Altoids, trying to ease my sense of disorientation, before going to Planet Sub and eating a big meaty sandwich to make up for the dinner I hadn’t had. I was awake well into the night, and ended up drinking a beer before sleep, getting a new bottle cap for my collection along with it. The next day I then had a realization: that autistic people worked so hard to pretend to be “normal” (not autistic), and that going to an autism group would mean they have to work harder to pretend by having to make sure no one they knew found out they were in it, and thus might not come to the group for that reason. Instantly, I went down to the OAS Office to make an appointment with Barbara on how to mitigate that problem. 

On Saturday I went down to Hillary’s room and met her friend John. After that I met her dad and after we went to the bookstore to get some medicine for his back, which he hurt last night mowing the lawn, we ate brunch outside the Union and got plenty of free stuff. We saw President Ambrose after that, and then went to his lawn where I saw Barbara and Mr. B, and met Jane, a new THRIVE intern, and got plenty more free stuff.  Hillary’s dad left and then she, John, and I went to the football game. She left in the middle to take John home and then I wrote down a list of Autist Dharma posts I wish to do, which numbered to ten. I got back to my dorm and worked on a friendship bracelet for the silent auction, during which time Tyler called. I decided later this weekend I would call him back. I went down to the Burg Fest with Hillary, where I had some old-fashioned root beer. We got dinner and sat down watching a band perform. During that time, I was inspired to write to more haiku from two pictures I shared on Facebook, and I learned that due to Boycott Autism Speaks, Panera Breads had also stopped sponsoring Autism Speaks. Hillary and I also shared kettle corn. Mardy joined us and we saw a fire dancer. Then we were joined by Michelle and I had a caramel apple. The four of us shared funnel cake and I got the idea to use my root beer bottle to make a ship-in-a-bottle for the silent auction, for which I realized I would need really long tweezers that I could probably order off Amazon.

The next morning, I started on my American Renaissance paper. Then I made two more coasters while I saw Drake demand Sara give him back his flip-flops, which he threw at her, and she said to me, “watch out,” and threw them back at Drake. Then I made some more plarn. I called Tyler and apologized for not being able to talk to him yesterday, and then Erin. I got back and made some more plarn while I heard Mom say she and Dave would be in Colorado until next Monday, and she suggested I get a ride home with Granddad on Thursday. Then I finished most of my American Renaissance paper while I worked on another friendship bracelet, while I also saw Sara wrestle Drake outside her dorm. I talked to Granddad, who said that either he or Grandmom would be able to give me a ride back home. Then I went to Break Time and got some Doritos and Altoids. Then I went into the lounge where I hung out with two girls from my hall, Desiree and Kaitlin, and a guy from another hall named Dakota, and we were quickly joined by Sara. I went to the doorway to our hall to talk to them, and then I saw on Sara’s right foot a tattoo that looked strangely like the autism awareness puzzle piece ribbon with purple, blue, red, and yellow puzzle pieces, almost able to tell what the shapes within the ribbon were. I casually sat down to get a better look at it, and she started running her fingers through and twirling her hair, eventually saying she had a knot in it and had to leave to go comb it. Desiree looked over at me smiling.

 

The next Monday I then read more of my Alaskan myth book during brunch. I also realized that if I were to get people to “come out of the autism closet,” I would have to be the first to do so, as Gandhi once stated, “Be the change you wish to see in the world.” And suddenly an idea came to me, one that seemed a bit nerve-racking. I took my mind of it, drawing the figures for the diorama for my Cinematography class. After that I drew a poster for with the letters ‘A-S-A-N’ at the top, the words ‘Autistic Self-Advocacy Network’ below that, the Autistic Self-Advocacy Network’s logo below that, the words ‘Kansas City’ below that, the words ‘Nothing about us without us’ below that with the last two words underlined in red as they were at the very bottom, and below that ASAN-KC’s website and Facebook profile picture below it, and posted it out on my door. I realized that most people may know an autistic person or someone who knows an autistic person but would good would it do if so many of these people are not open about their condition. I left for class, feeling anxious about putting the sign on the door, remembering how last year I seemed to do all I could to stay in the autism closet.

After my Cinematography class got out at 6:20, I had some pieces of bread for dinner, as the dining hall closed at 6:30 and the Autistic Self-Advocacy Network of Kansas City meeting started at 7. In the meantime, I worked more on my American Renaissance paper and wrote another haiku. Then I went to the meeting where we talked about an autism app that allowed people to use flowcharts to help them make decisions about work, social media, and face-to-face interaction, and Elizabeth suggested I get several THRIVE students to test it, and I agreed to bring it up to Barbara at my meeting with her on Wednesday. Soon after that we talked about our petition to Netflix, and I agreed to share it with some of my autism groups on Facebook. After that we talked about how we would be presenting at Disability Mentoring Day at Mid-American Nazarene University on October 17. Then we talked about our presentation at JCCC and planned to meet at Spencer’s (one of our members) house to practice for it.

After the meeting I talked to my dad and granddad, telling them about the meeting and the sign I put up on my door, which they thought was a great idea. The day went by and people in the hall still talked to me and treated me very much the same, some even friendlier. The next day after all my classes, I went to the Union and on the way got a good picture of a squirrel up close. There I did a post on Facebook saying:

I have been trying for almost two years to start an autism student organization at my college, the University of Central Missouri, and have been having limited success in getting students to join. What I've heard said is that autistic people often spend their day trying to pass for "normal," or pretending to fit in, and it becomes so exhausting trying to do so and figure out what everyone is thinking. So basically, my goal at each college I have been to is to create a thriving, open autistic culture at them, where autism is not seen as some abnormality, but part of the fabric of the place where people are accepted; a place where people, as I heard it said, can "come out of the autism closet." At JCCC, I believe, I was certainly successful. I started the JCCC Autism Spectrum Support Club and it rose up to at least eighty members in under five years, and is on the official list of student organizations. At UCM, the problem has been more difficult. Autistic students live closer and are more frequently in contact with people who might not be so accepting of them as autistic people, people who I have seen more than I wish to at UCM. So therefore, when you take into account the challenges mentioned earlier of trying to fit in, the students also have to sort of hide the fact that they are in an autism group, which we have now decided to call the Autistic Student and Peer Organization instead of the Autism Spectrum Support Group to sound less pathologizing. Basically my challenge is to create a campus where autistics are open and out of the autism closet, and I realized I have to start the trend myself, in other words, "Be the change I wish to see in the world." So yesterday, I found kind of a way to let my school mates and hall mates know I am on the spectrum. I drew a poster with the name of the Autistic Self-Advocacy Network of Kansas City, as well as ASAN's (national) logo, and the ASAN-KC web page and Facebook photo, which I hung outside my door. And I noticed nothing happened to me. People on my hall treated me just the same, saying hi to me and talking to me just as normal. Some even seemed more friendly towards me because I had come out of the autism closet. 

I also put a picture of my poster up with it. Soon afterwards, my friend Riccardo from Horizon shared the post and told Teigan and Marshall from ASAN-KC about it.  Marshall said, “Way too cool!  Thank you Ben, Riccardo.” Soon he and Teigan shared it, along with ASAN-KC, and Ari Ne’eman, the president of ASAN national. A Facebook friend, a father of a teenage autistic boy, who was autistic himself wrote, “Good work, Ben!” Joyce Downing from THRIVE wrote, “Being a positive example is a great first step.” My aunt Laura said, “This is great, Ben. Was wondering if you'd mind if I shared your post to my other Facebook friends? I think it's really well written. And well drawn, too.”  I thanked her and told her she could share it.  My grandmom wrote, “I'd like to share it too Ben. This was a wonderful idea!” My aunt Nini wrote, “Beautifully written, Ben! Here's hoping it will open some doors and some people's minds!” The first one, the father, also wrote, “Ben, if what you're doing were easy, everybody would do it. I tried for three years to get a friend's autistic college student to do some mentoring with my son, but he had worked so hard through high school to "pass" that he had no interest in stepping back into the autistic world. He would have been a great mentor, but was focused on the road ahead. I understood and respect him for his accomplishments (earned a CPA) and a corporate-cube job. Guys like you focus on the road ahead, but figure they may as well make it a bit easier for those coming behind, while they're at it. I applaud you for that.” Beth Rutt, the director of the Rec Center said, “Ben if there is anything we can do to help with your student organization please come see me. I would love to visit with you about the organization and maybe some things we can do to break down a barrier or two.  I'm really sorry to hear that you feel like it's been harder for you to fit in at UCM. If you want to visit come by the Student Activities Office, union 217 or the Student Rec Center. If I'm not at either one Tom or Paula can make an appointment. Hang in there Ben you are a man of great potential.”

On my way back I saw a flock of birds in the sky, realizing that they reach the sky when they work together. I got back and wrote in my poetry journal:

A flock of birds

fly through the sky

together.

             I decided I would do one yarn painting of several birds flying.

Later I hung out with Sara, Cameron, Jessie, and a friend of Sara’s. I then got a closer look at Sara’s tattoo and saw the shapes in there were indeed puzzle pieces. All the while I worked on another friendship bracelet for the silent auction, and a guy from my hall named Giovanni came up to me and said he would pay for a friendship bracelet like the one I was making to be done in green, white, and red, the colors of the Italian flag. Sara, Cameron, Jessie, and I all went down to Late Night together, and as I was about to tell Sara about my squirrel picture she shushed Cameron. Then we went up to watch the movie together, though Sara left some time before it started, and I went to go see where she was. After not finding her, I went and sorted some recycling around campus. Then I got back and made some more plarn.

Later I knocked on Sara’s door, around twelve, and said, “Hi, I…"

She said, “Sssuusshh. Keep your voice down.”

             She was right. I didn’t realize how loud it was and it was past quiet hours, and I was glad she had my back. I explained to her that I didn’t see her during the movie and was wondering where she’d been. She said she had gotten back a little later after I left. Then she noticed my plastic bags, asking, “What are you doing with those?”

             “Just making some plastic bag yarn, or plarn.”

             “Ok, well have fun with that.”

             She smiled and went back into her room.

             The next morning, I went to my meeting with Barbara where I realized an article written by Haley Moss on coming out of the autism closet may be a good resource for finding out how to make other autistic UCM students do the same, and interestingly enough, the article is from a girl with autism. I realized that if we could put a poster in the OAS Office’s display case on girls with autism and their signs and struggles, their friends might be better able to prevent them from running into the sorts of struggles those girls often face, and thus UCM’s female autistic population may see it’s better for them to be out of the autism closet than in it.  Barbara also suggested we put The Friend of Autism Pledge on the OAS and THRIVE Blackboard and the OAS subscription e-mail, as well as on the OAS display case. Then I posted The Friend of Autism Pledge on The Autist Dharma. After that I got some staples at the Union bookstore, printed a copy of The Friend of Autism Pledge off at the Lovinger building, and hung it up on my door, with a sheet to sign it behind it, so no one would feel uncomfortable with others seeing their name and autistic students wouldn’t feel like they live on a campus unfriendly to autism if they didn’t see any signatures, but of course I put my name down. After that I took all my pull tabs to the front desk, as Ellis was having a pull tab contest between North, South, and East Ellis.

                It started raining that day and I went to relax in the third-floor lounge. Afterwards I saw Sara walking through the lounge I was sitting in saying she was going to roll up her car window in the rain, though by that time it had already mostly stopped raining. I drank some more coffee afterwards, and then worked on my yarn painting some more. After that I went down to dinner with my hall, where I was joined by a student who I had never seen on the hall before. I made my bracelet for Giovanni, during which time I saw Sara and Cameron walk through the lounge that I was sitting in. Then I gave Giovanni his bracelet, and he paid me for it, for which I would give the proceeds to the screening of Citizen Autistic, for which ASAN-KC was holding their silent auction for. After that I went to Late Night.  I also made some more plarn. Then I sorted a lot of recycling throughout UCM, and then got back to the dorm and made some more plarn, and soon Hillary and Mardy came up and we hung out together.

                The next day I went to study for my Anthropology of Food test, which was the next day. I then went on my UCM e-mail account and saw that I hadn’t noticed the e-mail I had gotten from the Office of Student Activities saying the meeting was scheduled for today at 3:30. Shocked, I sent out an e-mail to all our members and Barbara, though I didn’t expect much attendance from sending it out at the last minute. Suddenly I packed up all my things, went back to my dorm, and worked on creating a sheet of our four basic rules for the group-Compliments, Courtesy, Confidentiality, and Conference, meaning you could meet with a peer mentor if you saw fit), a sheet on the peer mentor’s role, and about the way our group meets, to help the members understand it like I do. I went to the Union computer lab and printed off ten copies of these things. Then I went to the meeting at its scheduled time and Barbara came and met with me. Sure enough, we were the only ones there, but we did discuss some ideas that would help make the group more attractive. 

The next morning, I took my Anthropology of Food test in the Testing Center and felt I did fairly good. After that I read some of the reading for my American Renaissance class. After classes I got the idea to use my bottle from the Burg Fest to make a sand bottle painting. Then Granddad drove me to his and my grandmom's house, and along the way I found out how to do bottled sand paintings on my phone. At their house, Hurley, for the first time, brushed up against my leg, and I realized I forgot my medications and told my grandmom and granddad, and they agreed to give me rides to my destinations his week. Then my grandmom took me to Hen House to get some food for the weekend at home, and on the way, she said I should ask Sara about her tattoo. We went to Hen House where I saw Lee, who seemed happy to see me, and got some drinks with a new bottle cap for me to collect. Then we got the number of Dr. Mays at Bruce Smith Drugs so I could call him, and he could give me a refill of my medication prescriptions so I could get my medication. Then we went to Minskey’s together. After that I got back and called Erin. I also made some more plarn. Soon after that I learned that ASAN-KC is meeting at Spencer’s house at 4 on Saturday from Teigan, as well as that she might be coming to UCM as a commuter student next semester and realized she may be someone who could help in the group. 

 

Visiting My Brothers and Sisters

            On Saturday morning in the middle of September I drove down to the Overland Park Convention Center for the Kansas City Ability Expo featuring artists from the Kansas City area, including Teigan and Marshall from the Autistic Self-Advocacy Network of Kansas City. After a little trouble finding the directions I got there and sure enough I saw them, sitting at a table with Teigan selling some of her drawings and Marshall selling comic books of his. They both seemed very happy to see me. Teigan told me that Elizabeth had come earlier.  

                “Thanks for coming!” she said.

Teigan told me at the Expo about ASAN-KC’s new petition to Netflix to get them to show more movies with positive portrayals of disability, as she said when you search ‘disability’ on there, the first thing that comes up is Autism Speaks’ film Sounding the Alarm. I told them about how I had recently been working on my letter to Alpha Xi Delta national president Sandy Edwards trying to persuade AZD to withdraw their sponsorship of Autism Speaks. Teigan told me that they at ASAN-KC had e-mailed them several times, each time getting back a “sorry, but not sorry” response. She suggested that we could try reaching out to individual chapter leaders instead to try and get all that we could on our side and until much of AZD had changed its viewpoint that Sandy Edwards would have to respond. I told her though that if individual chapter leaders stopped supporting AS, they could face extreme consequences from the National Council of AZD. Then I told her my idea for getting at least two hundred people from the autism community to put one-star reviews on AZD’s page criticizing their support of AS, since they now had an average review rating of 4.7 stars out of sixty-seven reviews and if we got two hundred or so autistics to put one-star reviews on their page, their average rating would drop so much and we could get their attention. Teigan liked that idea. I also told her my idea to get a bunch of us to put comments on their posts about their work with AS. She told me however that whenever someone puts a negative comment about AS on their page, they delete it and block the person.

                “Ok,” I said thinking heavily on the issue.

                “It’s alright,” said Teigan. “What’s that saying the squeaky wheel gets the oil?”

                 I met several artists at the Expo including an older woman with Cerebral Palsy, the mother of a non-verbal autistic girl who made several drawings, a deaf woman who gave me a pad of paper and a pen to communicate with her, and an older man with a speech impediment, who made fantastic prints and paintings. There were tables selling handbags, crochet patterns, paper cards with 3-dimensional flowers, and much more. I ended up getting two bookmarks for an optional donation and for $3 a card that said, “Thinking of you,” for when I find the love of my life and am away from her for a long time.  Before I left I went to say goodbye to Teigan and Marshall.  

                “Thanks for coming!” she said once more.

                “Sure,” I said.

                “You’re practically one of our favorite members. You’re a…what’s that word I’m thinking of?” she asked Marshall.

                “Asset,” he said.

                “Yes. I know, I’m just so tired, but yeah. We’ve been trying to get you involved for a long time… You’re like famous in the local community!”

                “Well, thank you,” I said.

                I finished saying goodbye to Teigan and Marshall taking some ASAN-KC business cards to give to people who might be interested in them. Then I went down to the lower floor, about to walk to my car and drive home when I got a call on my phone. Unable to see the Caller ID number because my screen was cracked I answered it, and a female voice came up, with me having trouble finding out whose it was because it sounded so similar at first to other female voices I know. Finally I found out who it was.  It was Erin. 

                “Sorry," I said, "I couldn’t tell who you were at first.”
                “Is there something you’re not telling me?” she asked in a very concerned tone of voice.

                “No,” I said honestly.

                “Cause I’m worried about you. Promise me you won’t do anything stupid.”

                “I won’t”, I said. “Don’t worry. I’m not going to drive in a car without my seatbelt like those two girls at UCM last year.”

                Erin heaved a sigh of relief.

                “Ok,” she said. “I was just kind of worried after I heard you had those drinks because I know some people who aren’t supposed to take alcohol because it interferes with their medication.”

                “No, it’s not that. I just didn’t realize how strong these drinks were.”

                “Ok,” said Erin, sounding relieved.

                Eventually I told her what I was doing, how I was at the Kansas City Ability Expo and what that was.      

                “You should get involved in that, Benny”, she said.

                “Really?”

                “Yes, cause your arts so good.”

                “Ok, well thanks.”

                I drove home and got back a few minutes later. Suddenly I realized that since I wanted to make plarn (plastic bag yarn) belts for ASAN-KC’s silent auction in November, I could take the gray Walmart bags I used to keep some of my stuff to repurpose, and replace them with white one, which I had over two hundred of to make plarn bags, which took about seventy bags, and use the gray ones for belts, as I thought that would look better for belts then white ones. After that I went down to Starbuck’s with my Cinematography textbook to read. First, however, I checked my notifications on my Facebook feed and saw that a Facebook friend of mine, Amy Sequenzia, another person who was famous in the autistic community, had invited me to an event on Facebook called “Tell Dr. Phil and the Media that Issy Stapleton is the VICTIM!” Basically, a mother, Kelli Stapleton, with a severely autistic girl had tried to murder that daughter of hers, causing her father to take her away, and Dr. Phil would be interviewing her on the Dr. Phil Show. We weren’t sure, but many of us were worried Dr. Phil would sympathize with Kelli’s statements that she tried to murder her daughter due to there being, “not enough services for her.” I accepted the invitation and then read my textbook.

                Later I went down to Jack’s new apartment in the Mission Project, with assistance for people with disabilities that let them live somewhat independently, seeing it for the first time. It felt great to finally see Jack again, and showed me his living room, kitchen, dining room, and bedroom, in which there were fantastic paintings and sculptures he had done at Johnson County Community College after he left THRIVE, including ones I had seen of his earlier. Jack had always been a terrific artist, and I was not surprised at these works. He also showed me a storage space he had down in the basement, where he kept his bicycle, and the laundry room. He also told me Corey, Zach, Pierce, and Julie, our friends from THRIVE, were now living at the Mission Project. He took me down to his workplace Script Pro., which manufactures pharmaceutical machines.  It was a beautiful building, which also had a goldfish pond and garden from a house it had bought, which was now part of its facilities, a rec center, and a martial arts and yoga studio. He took me to their break building, storage units, custodial area, and customer service building. It was a neat area and I was glad Jack got to work for it. In a couple of years, he said, he may move on to doing things other than custodial work, which he enjoyed doing for them. He said the people were really nice, some of them being funny, and that one person there also had autism.

                We got back to his apartment and ordered pizza from Dominos, which we walked down to get. As I remembered him, he ordered his with no sauce just like mine. Afterwards we watched the movie Cast Away on the sofa in his living room, and towards the end, I noticed Tom Hanks said that during all his experiences, when he wished he was dead, all he could do was breathe, and it reminded him he was still alive. Before I left, I gave Jack a business card of ASAN-KC, thinking he might want to get involved in the art expo next year.

                I got back home that night thinking about what Teigan had said earlier that day about reaching out to individual chapter leaders of Alpha Xi Delta to withdraw their support for Autism Speaks. I realized, of course, that if they did that, Sandy Edwards from the National Council might invoke harsh consequences on them. She might revoke their charter, and the whole chapter would no longer be in Alpha Xi Delta. But then I thought, so what? I had already given up something like that for the autism community, having opted the choice of refusing to pledge to Tau Kappa Epsilon fraternity last year to focus on starting an autism group at UCM, after feeling the bid was a refreshing step from years of bullying, discrimination, and misguided counselor, and since then had not looked back, as I said to my dad (about the autistic community of UCM), “they are my brothers and sisters.” If Alpha Xi Delta sisters were to wear the mane of autism advocates, why should they not have to sacrifice like I did for the cause? I remembered Cassie Burghoff, the first friend I had made at UCM outside of THRIVE, who I was now long sure had Asperger syndrome, remembering her sacrifice to be a social worker, and my willingness to honor her path despite the fact that I had grown very fond of her. Why should AZD sisters be considered top advocates when they have done what they do from comfort and convenience from being sorority leaders with resources and privilege like we had not had?

                The next morning before I went back to school, I gathered up all my gray Walmart bags I used to keep my recyclables in and put them in white ones. As I was about to leave and feeling stressed about all I had to do (at least that I wanted), I remembered what Tom Hanks said in Cast Away about how he just had to breathe and he remembered that he was alive, just how I remembered Timber Hawkeye in Buddhist Boot Camp said we can focus on our breath and remember that we are alive. Then, with my mother in the car next to me, I drove on the highway for the first time in a while to Lee’s Summit, where I would meet my grandparents who would take me back to school. We drove back, and I told my grandmom, who was excited to hear, about my work with ASAN-KC and their new existence in Kansas City.  

                “Well that’s good," she said. "We need that.”

                I got back, gathered my stuff, said goodbye to my grandparents, hugging my grandmom goodbye, and went up to my dorm. I took my recyclables (except for my glass) down to the recycling bin in the courtyard. Then I made four more leather bracelets, getting caught up on my quota. I also saw my plastic buckles had come in the mail. 

                I ate dinner with Josiah, Sally, and Josiah’s friend Ben tonight. After that I made another paracord bracelet. Then I worked on my song some more. After that I ran on the treadmill for about an hour. After I got back I got some more beers at Break Time, an amber lager, which tasted surprisingly good to me, and from which I got a new bottle cap for my collection. Erin called me, apologizing for jumping to conclusion with me yesterday, and told me she didn’t mean to imply I’d do anything. I told her it was fine and she didn’t need to worry. Then I went back to my dorm waiting to get to sleep, and remembered how whenever I mention anything autism-related to Cassie, e.g., my autism group, she tended to get a little annoyed at me mentioning such a thing, as if she did not want to talk about it. Yet I realized if one were to say that had an autism spectrum condition to their friends, it would be so much trouble faking to pass for “normal,” as autistics so often had to do.

                But I knew exactly how Cassie felt. There was nothing wrong with her beyond the way of being a normal human being. Having an autism group to go to and be accepted at couldn’t possibly satisfy the need to feel like everyone else. 

 

               

The Next Rush Begins

After I got back from Labor Day again made another bracelet for the silent auction. The next day I went outside, trying to spend some time outdoors as I heard it relieves stress, and read a lot of Walden for my American Renaissance class. I saw Sara walking by, though having forgotten her name, and she smiled and waved at me and we both said hello. I later went into the dining hall to get some coffee and relax, when I saw her. We both said hello and I said to her, feeling bad, “I’m sorry, I forgot your name.”

                “Sara,” she said.

                “Ok.”

                As she was getting some food, I told her, “If you want you can come sit with me.”

                “Ok,” she said.

                I sat down and after she was done getting food she joined me. We sat together and got to know each other a lot. I learned she was a Criminal Justice major, a junior, was from Lee’s Summit, had three older siblings, and didn’t like to watch TV, but loved to read. She was amazed by how I did my class schedule, saying she feels like she can only work with an organized schedule. I also learned she was taking Creative Problem-Solving with a different instructor. I told her about my coasters and art, and she said, “I could never do anything creative.” And I told her, “Well remember what they say in class about how everyone has creativity.” I asked her if she had any pets and she said she and her boyfriend both have a dog who lives in his apartment in Warrensburg. She asked, “Is your family coming down for family weekend?” I said, “No, there not.” It felt very nice that day being in her company.

                Later I returned my library books, deposited my pay checks, got a new student ID at the bank because mine was bent and they told me I could get a free replacement if I still had it at the bank, and bought some tape and glue at the Union bookstore to make some more receipt coasters for the silent auction. Then I read more of Walden this time indoors. After that I ate dinner with my hall. I skipped my exercise on the treadmill that night so I could finish my Creative Problem-Solving homework, which was due the next day. Then I started on my bracelet for today. Hillary got to my room and I helped her with her Composition I homework and agreed to be her tutor for that class. Then I finished my bracelet.

                The next morning I got up an hour earlier to do the rough draft for my Anthropology of Food class, which was due at the beginning of class at 9:30 that morning and was met by Paige, who I sat with, and she asked if I could meet her at the dining hall later today. We eventually decided on 4, and I agreed to be there. Then as I finished breakfast I saw President Ambrose of UCM come in and sit with a group of students, and went to say hello to him. He got up, shook my hand.

               “How are you doing?” he asked.

               “Goodm” I said.

               “Yeah, and how are the new students?”

               “They seem pretty good. I’ve met a few of them this year though not all of them. I graduated a year ago.”

  “And you’re still here?” 

  “Yes.”

  “Well, I’m proud of you. Keep up the good work. How are classes going?”

  “Good,” I said.

  “Well that’s great. You let me know if there’s anything I can do for you.”

  “Ok,” I said.       

                Wow. That felt good I thought as I left the hall.

                Sure enough I did get my paper typed up and turned in at the beginning of class. I also signed up for a paper tutorial the next Wednesday at 1. Then I responded to an e-mail from Nannie thanking me for my card, which she loved, and asking about my classes. After that I found Amos Bronson Alcott to write about for my American Renaissance research paper and e-mailed my instructor about it. I then read more of Walden. I went to my American Renaissance class where my paper proposal was approved of and I did the weekly writing and took part in our class discussion. When I got back and made another bracelet.

                I went and took my glass and other recyclables I found along my trip to the sheltered workshop. On my way back I went to the gas station where I got a new Snapple cap from my drink and saw Sara, whose hair looked like it had just gotten out of the shower. I got back and I made another bracelet. Then I made another coaster from receipts, while Jack called, during which time I told him I would be home next weekend and he invited me to come over and see his apartment, the Mission Project, his workplace, and order pizza, watch a movie, and go for a walk around the neighborhood. After that I went down to the bowling alley with people from my hall. I got back, and realized that if we, the autistic community who is dissatisfied with Autism Speaks’ impact on the autism community, were to give Alpha Xi Delta several one star reviews on Facebook, telling them why we’re angry at the organization they support, we might be able to send a message out to them.

                The next day I went down to breakfast and was joined by Paige while Mom called and said that she saw Rick at Hen House and he said he got a note thanking him for my hours from me and was really impressed by it, and asked her to let me know that he’s always willing to give me work when I’m home for the breaks. I read a little bit about Walden in my latest issue of Sufi magazine, in an article about the spiritual environmental movement, and thought that might be something I’d love to get involved in with my writing and work. Afterwards I started working on some coasters while Josiah came and looked at our room and was impressed by the art work I made. He showed me a battle ax he made from beer cans that he drank from and said that I ought to show Sara my art and mentioned that she always talks to me when she passes me. He and Mardy played some video games while I finished my coaster. I then went down to Those Were the Days and bought several new post cards to frame and some red embroidery floss. Soon after I got back I saw several posts on Alpha Xi Delta’s Facebook page about their work with Autism Speaks, and realized we, the autism community who are not happy with Autism Speaks, were to gather in numbers and put several comments on those posts, we might get across to them. I talked to my granddad and he liked that idea. Then I went down to a gas station and got some more beers. Later on I went down to the new Fitzgerald diner where I sat with Mardy, Levi, his fiancée Rebecca, Blaire, Kriti, Josh, and several other THRIVE students. When I got back to the dorm, I felt tired and aching, and wrote a poem on how I felt like I had climbed a huge mountain every day from years of advocacy, bullying, and discrimination.

                The next morning I went down to breakfast where I ate with Paige and two other THRIVE students who I met: Ellie and Sally. Afterwards I read a great deal of Walden outside for two hours. Then I did my laundry. During that time I sorted a lot of recycling. I also took my pictures for my Cinematography class.

                During dinner I commented on a Facebook post about Autism Speaks sponsors saying we should avoid the events of, comment on the posts about Autism Speaks from, and give one-star reviews criticizing Alpha Xi Delta’s involvement with Autism Speaks for the reasons we dislike it to Alpha Xi Delta. Then I shared the link urging people who disliked what AS does to the autistic community to avoid and unlike the pages of any of their sponsors that they had liked. I got back to my dorm and made another bracelet for the silent auction. I read more of Walden on the treadmill and when I got back I learned Ink4Autism decided to stop advising businesses to donate to Autism Speaks and donate to other groups instead and Drew Carrey, who was originally going to donate to Autism Speaks in solidarity of an autistic boy who was hurt during the Ice Bucket Challenge, instead decided to donate to a different organization after several people tweeted him telling them what Autism Speaks does to the autistic community. I then worked on my box and my Buddha a little more. I got the idea to carve some infinite signs, one for myself and one for the girl who turns out to be the right one for me, and started doing it. I went out into the lounge to relax, and again saw Sara pass me by, waving at me, carrying a bag.

                The next day I sat with Blair, Ellie, Kelsie, Shay and her boyfriend, and Mardy at lunch. Afterwards I read more of Walden outdoors. I also figured out how many white bottle caps I would need to make an autistic pride rainbow infinite sign. I then went into the dining hall to get a soda and saw Sara and Cameron there and we both said hello to each other, Sara giving me a very genuine smile. I figured out more of how I would make my bottle cap wall fish after that, and said goodbye to her before I left. After that I read more of Walden. Then I saw Sara through the doorway of the stairwell. She saw me and waved at me, smiling very wide. As we parted ways as she and Cameron went to the Rec Center, she turned around, smiling so widely she showed her teeth, and waved. Then I got to the Union bookstore and got some sticky pads. 

                After class I gave Hillary, Mardy, and Josiah all beers before going down to Crazy Dog’s to eat. I went to Crazy Dog’s where I enjoyed their delicious burgers and got a new bottle cap for my collection from my delicious ginger beer. I got back and as I was unlocking my door to go into my room, I saw Alex and he said he saw my snack wrapper collage and was really impressed and almost thought it was a painting. I went to Late Night where I met Hillary, Mardy, and Josiah. Then I carved my Buddha figurine some more, learning more of how advanced carving is done. After that I hung up all my prints I bought outside the Union. Then I made another bracelet for the silent auction.

                After taking a shower the next morning I went down to breakfast where I was joined by Josiah. During my Creative Problem-Solving class I remembered how at JCCC we used to have role-playing skits at my autism group to demonstrate the right way to act in the social situations we would encounter in our next week’s activity and gave people a copy of our agenda in each week’s meeting, and realized we ought to do that at UCM. So after class I went down to the Union and scheduled an appointment with Barbara for next Wednesday at 11:30. After making my appointment, I went down to the Union bookstore, and got a new pocket notebook to replace my old full one. Then I got myself a white chocolate blast from Jazzman’s as a reward for all my hard work, and sat down in the Union. After that I rested some more before going down to see a presentation about Mexican revolutionary politics during World War I. I got back and wrote down some more of my ideas, and got the idea to compile all my poems into a book to show how I left my comfortable urban life to seek something more in rural Missouri. I went to Late Night and afterwards my granddad called to see how everything was going for me, and I told him all about the past few days and what had gone on then. I realized that this time I have down at Central Missouri is sort of like Thoreau’s experience at Walden Pond, leaving behind the city life for something more and learning to be satisfied with less. Then I went to do my Cinematography quiz. I got back and made another bracelet. 

The next morning I had breakfast with Mardy. Soon after that I went to the tutorial with Dr. Yelton, who told me his suggestions for my paper. I was walking back and ran into Karen Fahrmeier from the THRIVE staff, and went up to say hello. She told me the THRIVE students were putting on a float for the homecoming parade, whose theme this year was a puzzle piece, and thought my group would like to join in. I told her we would and thanked her before leaving her. I also saw Jacob, a friend of mine from South Korea, who I had met last year through my roommate, also from South Korea, while I was waiting for the meeting, and he invited me to come to a birthday barbeque of his with several of his friends and I agreed to do that. I also went on Amazon and ordered several plastic hardware buckles to make paracord bracelets for the silent auction, some rainbow paracord (as the rainbow colors are used often by autistic advocacy groups), and a book called The Golden Hat: Talking Back to Autism by Kate Winslet and a mother of a non-verbal autistic teen who together started the Golden Hat Foundation to provide services so children like her son could thrive. The book had quotes from celebrities who were drawn to the Golden Hat Foundation, poems from the woman’s son describing his life with autism, and the story of the Golden Hat, to whom a great deal of the proceeds from this book went to.

I went to the meeting, led by Anna, and at the end, Shay came up with the idea for a puzzle piece frame with a puzzle piece outside it, symbolizing that the viewer is the missing piece in the world of autism and needs to act. I told her I liked that idea before I left. My mom agreed to pick me up after I got back and the next day I went to Late Night with Sara and a few of her friends, where I learned she went home that weekend as she did every weekend, before they went to a party and I stayed behind as I realized I had an on-line quiz for my Creative Problem-Solving due at midnight that night. The next day I went to Those Were the Days and bought some more post cards to treat myself, before going down to the place outdoors, though partially under a canopy owned by UCM campus, where I met a few of Jacob’s friends, both Korean and Westerner, and enjoyed some delicious strips of marinated barbeque. I also got the idea that “the Autism Spectrum Support Group” might sound a little to dehumanizing for students to say they’re a part of to their friends and I thought “maybe the Autistic Student Union.” I put a pin in that and enjoyed some of Jacob’s delicious rum, afterwards feeling a little tipsy, and then had some of him fine whisky. A friend of his drove me back to the dorm, and we both commented on how he could be a great bartender, with me saying, he ought to combine it with a taxi service agency.

                I got back and met my mom, who understood that I was not up for driving and didn’t question my continual need to pull over to use a bathroom. I got home, feeling remarkably more alert, and called my friend Erin, and we got caught up on each other’s lives.