Skip to main content

Finding Myself in Finding Kansas

When I was asked to read and comment on Finding Kansas: Living and Decoding Asperger's Syndrome I didn't expect the book to affect me much, if at all. I've read many autism memoirs and some seem more familiar than others. I can relate to the writings of Stephen Shore, for example, more than the works of John Elder Robison. Temple Grandin touches on experiences I understand, but her life was far more challenging than anything I've experienced.

The readers of Finding Kansas might understand what its like to live with an autism spectrum disorder. I'm not sure, because I keep trying to tell myself that I'm not like Aaron — even when I know much of what he writes is familiar.

The writings of Aaron Likens reflect emotions and social issues so familiar they hurt. His memories trigger my own negative memories, causing a fair amount of misery. At the same time, I cannot relate directly to some of his experiences and impulses. I recognize Aaron struggles with his emotions more than I do, but I am familiar with the frustrations he encounters.

Reading about emotions and fears I experience, there is a disappointment in myself. I know Aaron has struggled with what might be called "emotional paralysis" — he feels trapped by his Asperger's Syndrome. His metaphor of the paralyzed man who can walk, but only in Kansas, reminds me that I feel trapped by my mind and body much of the time. For Aaron, though, there are few peaceful places for his mind. Racing is the main one, and it seems games are another. Two or three conversations were relaxing and free.

My "Kansas" where I feel normal is more varied that Aaron's small Kansas. I feel relaxed near the ocean. I feel relaxed near water, in general, from streams to lakes. I feel at peace among gardens, even with people around to ignore. Museums are nice, too. These are nice places to be with my wife; she can take photos and I can sit and listen to the sounds of nature.

Writing at my desk or working on computer code, I'm also as close to relaxed as I can get. Okay, sometimes I get frustrated by a problem, but I like the learning and sense of accomplishment when a problem is solved. Computer code doing as it was intended is a nice thing.

Yet, I do understand how Aaron can feel trapped in workplaces and other social situations. I understand not connecting well with other people. I understand my wife; I don't understand most other people. Maybe understanding one or two people is good enough. But Aaron doesn't often have that one person around on whom he can rely. He wants to be understood; he wants someone, anyone to comprehend his pain and frustration with aspects of his autism. For him, Asperger's Syndrome is pain.

Like Aaron, I've written that I'd love to be "normal" at times. Yet, I also know my autistic traits might be linked to whatever talents I have. He likes to be in control, to have order in his life. Aaron has a great memory (a blessing and curse), and wants to be the best at whatever he does. I'm a driven perfectionist, easily frustrated by disorder and chaos.

Attachment to things? Yep. For Aaron, it can be a soda can. For me, it is a particular brand of pencil and type of spiral-bound notebook. Things are associated with memories, which is how Aaron connects to people. He links the things to people to other memories. I do the same. A lost thing is a lost memory, a lost connection to people and events.

Too many aspects of Aaron's writings are so familiar that I have taken many breaks while reading his essays. I'll read an essay or two and take a break. Sometimes, I've read the same essay a few times to analyze the situations and compare them to whatever experiences I've had.

Everything I read helps me analyze myself. I find myself in words (and code). As I read Aaron's works, I'm finding myself while he is Finding Kansas.

Comments

Popular posts from this blog

Autism, Asperger's, and IQ

"Aren't people with Asperger's more likely to be geniuses? Isn't genius related to autism?"

A university student asked this in a course I am teaching. The class discussion was covering neurological differences, free will, and the nature versus nurture debate. The textbook for the course includes sidebars on the brain and behavior throughout chapters on ethics and morality. This student was asking a question reflecting media portrayals of autism spectrum disorders, social skills difficulties, and genius.

I did not address this question from a personal perspective in class, but I have when speaking to groups of parents, educators, and caregivers. Some of the reasons these questions arise, as mentioned above, are media portrayals and news coverage of autism. Examples include:
Television shows with gifted characters either identified with or assumed to have autistic traits: Alphas, Big Bang Theory, Bones, Rizzoli and Isles, Touch, and others. Some would include She…

Listen… and Help Others Hear

We lack diversity in the autism community.

Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations.

I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands.

What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks.

How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference.

Demand that your charities seek out the broadest possible array of advisers and board members.…

Life Updates: The MFA Sprint

Life is okay, if more than a little hectic at the end of this first month.

With one month down, I'm 11 months away from my MFA in Film and Digital Technology. Though things might happen and things do go wrong, so far I'm on schedule and things are going well —— though I'm exhausted and working harder than I did for any other degree. Because the MFA requires projects every week, this isn't as easy to schedule as writing. Even researching a paper can be done from the comfort of home, at any hour.

You cannot make movies by yourself, at any time of day. It doesn't work that way. Filming takes time, and often requires a team of people. It's not comparable to working alone on a degree in writing or rhetoric.

The team-based nature of film is exhausting for me, but I enjoy the results. I also like the practical nature of the skills being taught. You either learn how to adjust ISO, f/Stop, shutter speed, and other variables or you don't. You can have theories …