The Autistic Me

A reader asks, "If you don't think about the autistic traits, what about your wife? They tend to notice what husbands fail to see in the mirror." Is my wife be more aware of my "autistic" traits than I am? Probably. I suppose the above is true of all friends and family in our lives. The people observing us probably do see us for whatever we are, more clearly than we can see ourselves. She knows how annoyed I get with myself, which might help her tolerate me a little more. I dislike how locked in I get to thoughts, how much I worry constantly about failing at things, how tense I get in various situations. She knows I don't like my sensitivities, my fears, and my general anxiety. My wife reminds me to accept my limits, though I hate those limits. She tries to maintain order and calm, knowing how much I hate disorder in my life. I don't like to be told the obvious though: my mind doesn't let go of things, even when I wish it could. She'll te...

Every few months, online or in real (physical) life, I hear the skeptical, questioning, puzzled phrase, "You're not autistic. You can't be." I've addressed the question here many times, and I still lack a single good response. The "positive" versions: Because you are successful, self-expressive, driven, and have a career, it is hard to believe you are autistic. Because you are considered intelligent… Because you did well in school… Because you have a wife, good relationship with family, and seem to lead a "normal" life (especially for an introvert)… Because I've never seen a meltdown, non-verbal day, shaking, stereotypical behaviors… The "negative" versions: You must be lying to get attention. You played the neurologists for suckers. You are merely an awkward geek, like other smart people. You are using autistic traits as an excuse for being lazy. The reality is more complex, as it always is. Here's my cur...

After I speak to groups, one of the common questions, often in the form of an accusation or something, is, "Just how autistic are you? You seem so normal." Yes, seeming "normal" is how one survives and earns a living. Then again, be "abnormal" enough and you can also earn a living, but that's not the path I've decided to follow. On most days, probably 95 or more out of 100, I convince myself that I not only appear normal but that I am "normal" — or as normal as anyone else I know. But, on the difficult days or even during the difficult hours, I know I'm different. Recently, a colleague posted links to Facebook for two online "personality tests" that supposedly measure autistic traits. I've taken both before, and I recall the ASQ score was 42. But, I was curious and answered the questionnaires again. If you believe such things (and I question their validity), the answer to how autistic I am… very. As for the A...

There is one label I have embraced since the second grade: Writer. It is the one word I know describes me now and always has described me. I currently write plays and poetry, both of which I think are best heard, not read, by others. I write. Not a few pages here and there, but often thousands of words in a week. There have been times when I have written complete manuscripts, over 100 pages, in two weeks. I find that complete stories often come to mind, and I "see" these like films playing in my mind. The biggest challenge is writing to capture the story before my mind has moved ahead to the next project. — C. S. Wyatt, personal website When people ask why I don't "do more" for autism advocacy, or disability issues in general, I respond that I am first, second, and third, a writer. I write first to entertain, then to persuade. Then, I'm a teacher and a half dozen other things. But, I am a writer first. While I wish I could be everything, and curiosity ...

Earlier this week, I was asked by a young man how knowing I am "autistic" changed my life. His big question was if I would have not made some choices if I had known the diagnosis years ago. Is "The Autistic Me" a different me, making different choices? That's a good question, but I don't have a good answer. I'm just me. I know the label means something, but I choose the name of this blog as part of a class assignment — there wasn't a lengthy rhetorical analysis of the label or what it might mean to me. I've written the following about "autism" as a label: http://theautisticme.blogspot.com/2011/01/what-is-autism-beyond-word.html http://theautisticme.blogspot.com/2010/08/socially-constructed-autism.html There are many other related posts, too. I am ambivalent about the "autistic" label, neither rejecting it entirely nor embracing it without question. As a writer with a degree in rhetoric, I'm expected to understand the...

What if you aren't autistic anymore? The question was asked by a friend who had read the latest stories on the DSM-V and the criteria changes for autism spectrum disorders.  See this New York Times article: http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html I've written a great deal about defining autism so you might assume I care a great deal, personally. But, as I have written several times, "autistic" to me is a description of some traits  but not the entire me. My doctoral thesis included a long section on definitions of autism and the challenges of labels. My Ph.D does include the word "rhetoric" and a part of me does ponder the nature of labels. But, caring intellectually is not the same as passionately identifying with a label. Autism is a definitional issue.  1980: DSM-III adds "autism" 1989: First criteria for Asperger's published 1991: IDEA adds autism categ...

When someone tells me, online or actually to my face (which has happened) that I am not disabled, much less autistic, I want to rap him or her on the noggin with my cane. Too subtle? Oh, wait, that fits in with the angry activist image, which I disavow. Anyway, when someone says I'm too normal to be abnormal or something like that, it's a good time to walk away and go listen to classical music. This entire debate gets frustrating. The parents of "classic" autistic children meeting me today cannot imagine that my parents endured the same emotional (and financial) stresses as their families. They don't realize I'm the result of 40+ years of interventions that continue to this day. At birth, I was labeled mentally retarded and was non-vocal (not even crying). For months I didn't crawl or move about. I have engaged in, and still do under stress, what are perceived as self-injurious behaviors. I don't intend to hurt myself, but I have bruised my legs poundi...

How is self-advocacy affecting the word "autistic" and perceptions of what autism is? I debated myself about posting this. However, it is part of the book draft I am preparing to release and I consider it an important discussion to have. I know someone won't like what I've written, but maybe it can get people thinking about language. Autistic vs. with Autism Self-identity is part of how we build relationships and connections. An important development over the last decade is the rise of self-described “autistic activists” as a community. However, this has also caused tension. One of the many heated debates within autism communities is the proper term to use for individuals with autism spectrum disorders. I use a variety of constructs in this book. This isn’t part of an agenda. No matter which term I use, I realize someone will be offended. “Autistic” has the advantage of recognizing that autism is technically a descriptive label without an identified cause. We know t...

"Autism" is a word with clinical, research, and legal meanings. It also has social meanings and personal meanings to the individuals and families touched by autism. Defining "autism" makes discussions of "white" appear simplistic. I can explain white to students in a single lecture and then we will agree on the term "white" for the remainder of the semester. I cannot define autism to the satisfaction of anyone, not even myself. In video production, "pure white" has three precise meanings: 5000, 6500, or 9300 degrees Kelvin. The lower value is slightly "yellow" and the higher is slightly bluish, by wavelength produced. When I ask for "white" I have to be precise and give the Kelvin value to any editor for color matching. You would notice if different editors working on a film or television show used various "white" standards. (I could go on for pages on graphic design issues and color matching.) The hi...

My doctoral dissertation included a chapter on the definitions of "autism." I located regional differences in criteria and these differences correlate to diagnostic "clusters" where the more liberal diagnostic traditions are emerging. Some clinicians call for a broad application of "autismness" that scales from "zero autismness" to "classic autism." This would result in a lot of autism diagnoses. Others, especially researchers, cling to the DSM-III tradition that autism cannot be comorbid with a known physical diagnosis. This was explained to me in this way: if you know the cause, you can research and treat accordingly. Things we do know to be "medical" are moved out of the DSM on a regular basis. This is a logical strategy for categorizing and treating conditions. You wouldn't study Fragile X the same way you might neurotoxin exposure. I fall into the "if you know it, classify it" camp. If I know the cause of my...

To call autism a social construct is accurate according to the rhetoric / philosophy of science. "Autism" is observational, phenomenological, as long as it is defined in the DSM by traits and not a set of etiologies. That does not mean "autism" is not real. It means we define it imprecisely and experientially by committees and standards organizations. We have no "one" definition even within research or clinical practices because some insist on the broadest definitions (the "spectrum" of which I am increasingly leery) and others want a return to Leo Kanner's rigid definition that excluded "full quadrant" IQs over 100. If I assign the name "red" to a 650 nm wave, it is measurable and quantifiable. We can argue over the name chosen, but the wave itself is what it is. Autism is not like "red" because we don't have measurements that are precise. We have DSM-III, IV, and V definitions that conflict. We have Wang de...

On another online site, a parent of a "recovering" child with autism pointedly claimed that those of us who are diagnosed with autism spectrum disorders as adults are somehow not genuine. Among the comments posted to Left Brain/Right Brain ( http://leftbrainrightbrain.co.uk/ ): How does it just dawn on somebody they are on the spectrum??? How do others that are older decide they are on the spectrum??? Schools won't even take real diagnostics so none of the self made Adult Asperger's have any real claim to anything but a way to put down what helped my child to not be on the list of who you're searching for. The thread, both on LB/RB and as carried on elsewhere, is appalling. A parent actually had the gall to message me that I was not actually disabled, but was instead hiding behind the cover of autism to shill for the government and big medicine. This person argues that anyone speaking, traveling, blogging, and conducting research can't possibly have a "s...

There is no "right answer" to the following, and generally I don't think as much about this as others do. I don't like many of the labels people with ASDs have adopted. I have no idea why, but I don't care for autie, aspie, aspergian, or several other terms I've seen online and in print. But, I don't also don't know if it is better to write: "person with autism" or "autistic person" because to me these are like comparing "person with blue eyes" and "blue-eyed person." I suppose a better comparison is "person with deafness" and "deaf person." My traits are "autistic," but several people have responded negatively to "autistic" as an adjective. I don't know that "autism" is a great noun, though, since we have no idea what that means. Autism itself is defined by traits -- it is necessarily an adjectival label. I believe there are likely many "autisms" wi...