A Weekend for ASAN

The day after I got home I spent part of the day in Starbuck’s reading J.R.R. Tolkien’s The Silmarillion, and to my surprise, managed to get over twenty pages into it. On my way back I went to Rimann’s Liqour Store and got a new bottle cap for my collection from a giant bottled water I got there. Unfortunately that night my cold that I had been developing over the past few days started getting worse.

                The next morning I drove down to Johnson County Community College to attend the Autistic Self-Advocacy Network of Kansas City’s presentation at JCCC’s Autism Beyond the Diagnosis Conference. I got there and went down to the Nerman Buidling, where I found Sean Swindler, the man who had helped me so much at starting the JCCC Autism Spectrum Support Group, as I went to get my nametag. He smiled at me, held out his hand, and I shook it.

                “Ben,” he said. “It’s good to see you. How are you?”

                “Good. How are you?”

                "Good. I just wanted to tell you the group you started is going great. We get about twenty-five people to come each meeting.”

                “Wow! That’s great!”

                “Yes, it’s going great. And you started it all.”

                I then saw another familiar face I recognized from JCCC, Mary-Jane Billingsley, a faculty member from the school who was a great supporter of the great. I approached her and she was overjoyed to see me. She said a JCCC Autism Spectrum Support Group member recently presented at the conference and it had one of the largest turnouts they had had in a while. Soon I met up with Pam, Daniel, Spencer, Skyler, a young female ASAN-KC member, and a tall bearded member, Bart Ewing, a social worker who worked with autistic children and I met for the first time. 

                As it was time for the presentation to start, I went into the designated room and met Elizabeth, Elise from Horizon, and Erin from Camp Encourage, as well as a middle-aged blonde women and a wiry-haired, broad-shouldered black young man. I talked to Elise, who told me she was going to the movie benefit for Camp Encourage, which I had invited her to on Facebook later that day. 

11:30, the time we were supposed to start, was approaching, yet Teigan and Marshall had not yet arrived. Spencer went up to the stand and said that they called and had car troubles and were running late. As 11:30 came, they had not yet arrived and Spencer began the introduction, explaining the mission and history of ASAN and its local Kansas City chapter. Soon after, he finished and Pam continued, telling the audience about person-first language vs. identity-first language (person with autism-denying autism as part of a person vs. autistic person where one acknowledges it), and mentioned how still if an autistic person prefers person-first language, you should use it around them. The young female member went up to the stand next and spoke on autism rights. Skyler went up next to tell the audience about self-advocacy. Bart then spoke about accommodations for autistic and disabled people. Then, finally Teigan and Marshall arrived and gave their part of the presentation.  Marshall spoke at length about neurodiversity, and then Teigan spoke about cross-disability activism.  As the presentation ended, the floor opened to questions. The blonde women asked about her son with Asperger syndrome, and how they felt he might fit into the group. Teigan answered saying anyone who agreed to our rules on respect for disabled people were welcome to come. Then Erin raised her hand and said, “I agree with your idea of accepting autistic people the way they are. I just wanted to ask, how do you ask an autistic person whether they want you to use person-first or identity-first language?”

                Elizabeth spoke up.

                “I think just the way you worded it is fine.”

                The presentation ended and I met the audience and ASAN members outside the room. I approached Teigan and asked her when we were having the silent auction. She said we weren’t going to have it, as she couldn’t reserve a room at UMKC, but we might have it in January. I also told her about The Friend of Autism Pledge, and she said if I e-mailed her with it, they might be able to put it up on their website. The blonde woman approached me and asked, “Are you Ben Edwards?”

                “Yes,” I said.

                “Well, I just wanted to let you know I read your blog and thought it was just great, all that you chose to put on there. I love how autistics are just so honest.”

                I laughed.

                “Well if you liked my blog, there’s something else I did that you might like.”

                She nodded.

                “It’s called The Friend of Autism Pledge. Basically it’s a pledge of how one agrees to treat autistics, it’s on my other blog, and if you agree with what it says you can add your name to the comment section and I will put your name on a list outside the door of my dorm at school. I’m trying to get more autistics there to be able to be open about their condition so I can start a group for autistic students.”

                “Ok, well I will look at that. Can I get there from your other blog?”

                “Yes.”

                The young black male held out his hand and I shook it. 

                “Hi, my name’s Cole,” he said.

                “Hi, I’m Ben.”

                “She’s my mom," he said, pointing to the woman.

                Soon I met up with Erin and Elizabeth. I told Erin about The Friend of Autism Pledge and said I could send it to her via e-mail, and if she agreed to it, I would put her name on my list.

                “Ok,” she said and gave me her e-mail address.

                We all went out into the Nerman lobby and sat down. Several of the ASAN members were saying that in the future they would like to have an idea of what the room they would present in looks like beforehand, to avoid sensory overstimulation. A dark-haired woman sat around them and listened to them. She saw me and spoke to me.

                “Ben?”

                “Yeah.”

                “Hi, I’m Jennifer Smith, the president of the Autism Society of the Heartland.”

                “Oh, nice to meet you,” I said, shaking her hand.

                We sat talking for about another ten minutes until I got up and told them I was going to drive back home. We said goodbye and I drove back to the house.

             After I got back and went down to Starbuck’s again, reading up to thirty pages of The Silmarillion. Soon after, I got the idea to take some of my unflattened bottle caps (which I had duplicates of), flatten them, take some of my flattened ones, and make tambourines like I had last year, only this time with one stick that the caps were connected to by nails. I went down to the hardware store, got a short rod, got back, and made a tambourine. Later that night I also read more of The Silmarillion, getting forty or so pages into it. Unfortunately, my cold still got worse. 

                The next morning I finished scooping Peter’s litter box when I heard a knock on the door.  I went downstairs and saw who it was. It was Riccardo, one of my best friends from high school. 

                I let him in and learned he was here to talk to my mom about doing some work for her. I brought him to her and they talked about it. He also said in a few days he would be going to Italy to visit relatives for about a week. Soon my mom asked if he and I were connected on Facebook, and he said we were. He also said we had a few mutual friends including Teigan Hockman and Marshall Edwards from the Autistic Self-Advocacy Network of Kansas City. My mom asked, “Oh, are you a part of ASAN-KC?”

                “Sort of.  I don’t really know much about it.”

                “Well you should talk to Ben and learn about getting involved.”

                “Sure,” I said, my heart racing at the prospect. “We could go down to Starbuck’s and I could tell you about it.”

                “Ok”, he said.

                We walked down there and ordered our drinks. Then we went outside, to a cool October afternoon and sat down with our coffee. Finally I said, “So about ASAN…”

                “Yeah?”

                “Well, we’re a group that pushes for greater inclusion of autistic people in society. We were founded eight years ago by two young autistic college students, Ari Ne’eman our president, and Scott Robertson our vice president. We have chapters all across the country including York, Sacramento, Michigan, and of course, Kansas City. We also have chapters in Australia and New Zealand.”

                “Well that’s good.”

                “Yeah. Anyway, one thing a lot of us do at ASAN is use identity-first language when talking about autistic people, meaning we say 'autistic person,' rather than 'person with autism,' basically to denote that we don’t think autism is something that needs to be hidden about one’s self for them to be respected.”

                “That’s good,” he said, nodding.

                “We also believe in a concept called neurodiversity, where we believe all brains of people, whether they are autistic, not autistic, dyslexic, or whatever, should be respected the way they are and people with them should have equal rights to society.”

                “Good,” he said, looking interested.

                “And we also are a cross-disability group, meaning we work with groups of people from all different disabilities to promote equality and access for all of us. So we work with organizations of people with Down syndrome, dyslexia, Tourette’s syndrome.”

                “Well, I have a question?”

                “Yeah?”

                “How can I get involved?”

                Relief came into my body.

                As we walked back to my house I told Riccardo how ASAN-KC met every month and how if you couldn’t attend in person, you could attend on-line through Google+. I also told him about my Friend of Autism Pledge, and that I could send it to him, and if he agreed with it, I could add his name to the list of names on my door. He agreed to let me send it to him, and when we got back, he gave me his e-mail address. 

                He hung out at our house for a little while, watching the football game with us. Meanwhile, my cold had gotten almost unbearable. Soon Riccardo left, and around that time, I got packed up, and my mom drove me back to school, while I felt too tired to drive myself. We got back and she insisted on vacuuming the room herself for a little while. She also located a package in my room that I hadn’t opened yet, and inside it turned out to be a whole bag of Wasabi peas, which she said would be could for my sinuses. She left me with some cough drops, and later I went down to dinner. I got back to my hall, deciding to just rest, and went out into the lounge and read more of The Silmarillion, getting almost fifty pages into it.