The Autistic Me

When I attend events like the recent Autism Society national conference, it reminds me that we do a lousy job reaching out to parents and providers with a broader set of experiences. Bluntly, the attendees tend to be white, middle-class, and female. That doesn't mean that there are not minority voices, or that there aren't some fathers present, but the gatherings are not reflective of our communities richness. Conferences are expensive to attend, time-consuming, and not really something I do for social purposes. I admittedly skip the "town hall" gatherings, the fundraising gala, and other events. I walk the vendor exhibits when the hall is least crowded, often right after lunch. So, the events are not for everyone. Yet, they shouldn't seem so exclusive, either. How can we attract more voices to the conference? I'm not sure, but when you are an insular group, even without meaning to be exclusive, you don't learn as much as you could. The problem is,...

I am scheduled to participate on a panel at the 2013 Autism Society Conference: Friday, July 12, 2013 3:30 PM - 4:45 PM David L. Lawrence Convention Center Pittsburgh, PA. The topic is broad: life. That's a lot to cover in the 15 minutes each of four speakers will be granted. I don't know what I can say in 15 minutes, but I'll give it a shot. The moderator has offered the following ideas: What did family do for you? What were your school experiences? What was a help and what was not helpful? How has your adult life developed? What are you doing and what would you like to do? What are your sensory issues? Do you have friends or relationships? The quick answers, if I choose to tackle these topics in the short amount of time allotted: Family, especially my mother, did whatever they could to guarantee a "normal" childhood. School was a miserable experience, even through graduate school. That's how many people would answer, including those wit...

Having moved from Minnesota to Pennsylvania in 2011, I have not been directly involved in autism advocacy and education for the last 18 months. I was busy enough moving and navigating my new workplace that I decided I was busy enough without volunteering to help others. Now that we are settling comfortably in Western PA and the job is now focused entirely on research (no teaching this semester), I want to do more. On January 16, I had a nice lunch with Dan Torisky and Heidi Hess of the Autism Society of Pittsburgh ( http://www.autismsocietypgh.org ). Mr. Torisky is the president of the Autism Society chapter (or "affiliate") and Ms. Hess is the coordinator of community outreach. I look forward to working with the local chapter, because I respect the Autism Society of America ( http://www.autism-society.org ) and the work it supports. The ASA annual conference is going to be hosted by Pittsburgh this summer, July 10-13, 2013. I look forward to helping the local chapter h...

My wife an I spent the holiday at home, with one friend, and that was fine with us. We'll likely spend New Year's Eve quietly watching movies, as well. Our ideal holiday, like most days off, is spent quietly with just the two of us. That's about as social as either of us wants to be. I might want out of the house at times, but I don't want to attend social events. I never enjoyed family gatherings, which are just too loud and too stressful. I want to enjoy a holiday, which means I don't want the stress of people. Yes, Thanksgiving, Christmas, and New Year's Eve are about family, but I can call and e-mail family members. I don't need to be in a crowded house, anxiously waiting for the holiday to end. Holidays were rarely pleasant as a child. I dreaded them. I still do. The fact we are several thousand miles away from family was somewhat "helpful" over the last five years. It means we can be alone without offending anyone. I care about my famil...

Autism Advocate , the monthly magazine of the Autism Society of America, includes a list of "QoL Indicators" (Quality of Life) developed by Dr. Ted Carr. The list of issues ASA seeks to address: School inclusion. Social connections (friendships, relationships). Health and well-being. Academic success. Autonomy. Supported and independent living. Supported and independent employment. Subjective well-being. Recreation and leisure. I don't quite understand why some of these are separated, since they are closely related. For example, I assume "school inclusion" and "academic success" should be together. When you can have academic success via independent living, part of education is socialization. I'm also not clear on the "autonomy" point. We are all interdependent in a society, so this must mean the ability to choose what one will or will not do. Which items on this list are most important to you? Why? What items would you add or remove from ...

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members. Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable. Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism. At the Autism Society of A...

It is no secret that I struggle in social situations, including large conferences. So the question is asked why I attend events like the Autism Society of America National Conference, which is this week in Dallas. The simple answer is that I do learn a lot, both "academically" and socially. Today I met author and blogger Lisa Jo Rudy. She has a book out on how to have fun -- an essential mental health skill when living with someone diagnosed with autism. To learn more about her books and general science writing, visit her website: http://www.lisarudy.com Honestly, I don't think my wife and I take enough time to relax. Much of what we would consider "fun" is still intellectually stimulating. They say children learn significant lessons during "free play" (unstructured time). For me, that unstructured time would be spent meandering museums or gardens. Sometimes, you do need to let your mind wander in order to learn even more. I always thought I learned a...

Increasingly, I am aware of the "communities" to which I don't belong. An overused word in the humanities, "community" is more than a group of people with some minor similarities. A community has to have some manner of unified sense of purpose. I belong to several organizations without any desire to interact with other members or associates. I don't attend any regular meetings of any organization. When I attend conferences, I try to arrive close to when I am scheduled to speak and then depart as soon as possible. Bluntly, people often annoy me. People are cliquish. They want to be around people like themselves, which means I find myself outside most "communities" to which I am expected to relate. When my wife and I first moved, I tried to attend one social gathering of an organization -- but left before the event began. I couldn't tolerate the setting, which was a restaurant with a decidedly political decor. Maybe that doesn't matter to mos...

Summer is conference season. I honestly don't follow the "autism community" and did not know there was an autism conference for individuals with ASDs. The "Autreat" is currently underway, but I thought I'd mention it so people could learn more about the sponsor and consider future events. Autism Network International Autreat 2010: Living Life the Autly Way June 28 - July 2, 2010 Bradford, Pennsylvania http://www.autreat.com/ I can't say much about ANI or Autreat. I'm sure there is much more to the conference and I'd learn a lot from any presentations. I find the title of the conference odd; I don't know what "autly" is and the suggestion of a "way" to live doesn't appeal to me. Still, I generally dislike conference titles. The "big event" within the autism community is probably the ASA conference. Autism Society of America 41st Annual Autism Society National Conference and Exposition will be held July 7-10, 2...

With Autism Awareness Month beginning, so are the annual debates on various online forums and within the media. For the next month, expect stories on the debates, the controversies, etc. involving autism. On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks. If you really want to get people arguing, mention Autism Speaks, Generation Rescue, Autism Society of America, and Autism Self-Advocacy Network within any forum. The views of these organizations are often not grounded so much in logic as faith. Some people really, really dislike one or more of these groups. The groups themselves fight for funding and public attention, plus there is local-level animosity in some places. I am a member of the Autism So...

The ASA has said they want presenters to upload files as PowerPoint slides, asking that their laptops and equipment be used at the Dallas conference this summer. Am I the only person most comfortable using my computer, with my keyboard quick keys and usability settings? (I see 20/400, so I magnify the Mac screen and have shortcuts for routine tasks coded in AppleScript and Automator.) My computer has a name. I know, it's silly, but my computers are named for specific cartoon characters. The server and printers are also named. I think of tasks in these terms. In a public space, I rely on the security of the familiar. Even when I speak to hundreds of people at a conference, I drag Wakko along. He's tweaked for my use. Maybe it's too weird. I can even tell the difference between Mac keyboards, since keys "travel" and "bounce" differently. I like my computer. I don't like using other systems. I hate it. I also write on a specific type of paper, with a s...

I turned my dissertation draft in to my adviser shortly before Christmas. I am now waiting for suggestions, which will then allow me to finish the dissertation in January. If all goes according to plan, I will be done with my doctorate by April. The journey through graduate school will finally be over. There were false starts in the past. Failed attempts at M.Ed programs, when I hoped to return to teaching high school. One failed attempt at a journalism degree, which simply proved to be bad timing for me physically. Now, though, I have completed my M.A. in English and my Ph.D work in Rhetoric. It was a long, long journey. I count at least four attempts at a master's before I finally finished a program. Finishing was important because it finally meant I could teach full-time, at the community college level. My wife and my academic adviser were both equally responsible for my success. I needed her to keep me working through the rough times when I wanted to quit. I needed an adviser w...

The raw text of my presentation for the Autism Society of Minnesota state convention, Surviving the College Years, is now online at: http://www.autisticplace.com/wiki I am speaking tomorrow afternoon, but attending the conference for most of the day. My hope is to promote both The Autistic Place and my individual Web pages, within reason. I am hopeful that I can reach out to more students online than I ever could via public speaking — which is something I find stressful. My airline reservations are also set for the ASA convention, where I will be speaking July 11, I believe.

It has been a tough couple of weeks. I skipped a class last week because I could not speak well and was having a great deal of difficulty walking. My mind and body are not in agreement lately. With all that has been happening at the university, it was reasonable not to attend class with flapping arms and strange verbal outbursts. I wish I understood myself and could control my arms, my legs, and my mouth! This weekend I slipped down our basement stairs, fell into the walls more than once, and whacked my face against a bookcase in our bedroom. My internal sense of balance is definitely offline; whatever internal gyroscope most humans have is malfunctioning. The verbalizations, usually grunts and shrieks from pain, are annoying. It is worse than an elderly man trying to stand up from a beanbag. I yelp in agony, randomly, without realizing it. Quite annoying. You would think I could bite my lip or something. It scares the cats. The pain seems to result in something like the chill...

I recently spoke at the Autism Society of Minnesota. It was a good experience, overall, and I think the audience enjoyed the presentation. When I speak, I never know how well things went, but my wife noticed the comments people made because she was sitting in the audience. AuSM has graciously asked me to repeat the presentation at their annual convention. The AuSM 2008 Annual Convention will be in Minneapolis, April 30 through May 3. I look forward to having a larger audience before I travel to Orlando for the national ASA conference. When I speak to a audience of parents and teachers, I feel like I'm making a genuine difference. When I sit and write, I'm never sure that others are affected. Despite being nervous when speaking, there's a real sense of connection during a presentation.

I am scheduled to speak at a workshop sponsored by the Autism Society of Minnesota on January 23, in St. Paul. If anyone cares to meet me and hear me ramble about university students with autism spectrum disorders, this is a good opportunity. (Visit http://www.ausm.org for more information.) The Autism Society of America has also invited me to conduct one of their 75-minute conference sessions at the 39th Annual ASA National Convention. This event will be in Orlando July 9-12. I'll post more details once I know the date and time of my conference session. (Visit http://www.autism-society.org for more information on ASA.) As always, I do my best to meet individually with parents, teachers, and students to offer whatever advice / insights I can.

The line between anxiety disorder and whatever it is I am is often too blurred to matter. Since my first semester at the university fell apart, the second and now the third bring nothing but dread. A lot of dread. I wish it were different, but there's so many other things also occurring in life that school is just one more thing -- and the thing I enjoy the least, slightly ahead of driving in Minnesota and taking public transit. The problem is that school merges all of my issues into one bundle. The urban setting of the campus, unlike the campus where my department was based, makes me tense. It is noisy, dirty, and unpleasant. I do not like it nearly as much as the other campus. Urban settings are not for me -- they are too intense. I do not like public transit, but driving in the area (and parking) is nearly impossible. The stress of planning how to get to and from campus is overwhelming. I especially dread the winter months. Normally, I need extra time to recover from s...