The Autistic Me

Earning the MFA in Film and Digital Technology proved a challenge, in many ways. We had medical emergencies (including surgeries for both my wife and me), family emergencies, and the general financial stress of a graduate degree. There were long nights and weekends spent working on projects and papers, trying to add to my marketability so I might earn some money to contribute to the household. I now possess the MA, MFA, and PhD pieces of paper. My areas of specialization are the economics of media and portrayals of economic issues in the media. I'm interested in how we discuss economics and find it fascinating that an expensive industry (media) that embodies capitalism finds itself conflicted. More narrowly, I'm fascinated by the visual aspects of digital media and how those are used to engage in persuasion. There isn't a huge demand for the rhetoric of economics, especially within visual rhetoric. It's a small field, dominated by a few names. You need an apprecia...

I am considering two possible full-time posts at the university where I teach part-time. I love where I teach and shifting to full-time would enable me to better support the local performing arts. The university supports my artistic endeavors, and that's refreshing. Accepting a post does not require scholarship if I wish to maintain "teaching track" status in the future, but an administrator told it would be "icing on the cake" and has led to teaching-track faculty being awarded research support and rank promotion (associate, full, etc.). A few colleagues have suggested I compose a research agenda statement and pursue publishing on my dissertation topic. My doctoral research topic was autistic students and online education, though I also conducted two grant-supported surveys on the general experiences of autistics in college writing courses. To revise and publish the research would be a serious undertaking, but I believe one that would serve the community and th...

Yesterday, I received the following e-mail "alert" from the Autism Society of Minnesota (AuSM): Representative King Banaian (HD 15B-St. Cloud) has introduced HF 1642, which eliminates numerous special education laws and rules that have served our children well in the State of Minnesota. Among those slated for elimination are the Minnesota Pupil Fair Dismissal Act (121A.43), requirements for assistive technology, and rules that create parent advisory councils (or Special Education Advisory Council). This is a bit misleading (big shock in politics). First, the Minnesota legislative website lists House Files only through 1633 -- there cannot be an official filing HF 1642. I explain this more below. Second, Dr. Banaian voted against the Republican budget (one of two GOP members to do so) because it cut education too much. According to MinnPost.com: Banaian was one of two Republicans who voted against the Republican cutting plan. "The higher-ed piece was the worst for me,...

I maintain several blogs, all started as part of a class project some years ago. (See Four Years as an Autism Blogger for the history.) One of the things you have to accept when writing in public forums is that some people will feel compelled to insult and attack an author instead of his or her writings. Also, you have to accept that though you are writing from one perspective (which should be painfully obvious to all readers) someone will be upset that you don't share his or her perspective. These are the "whatever" moments of writing, especially of blogging. I write a monthly column for a regional magazine. The column has nothing to do with autism or special education. I write on technology issues. But, as any technologist will affirm, technology preferences and biases are accompanied by a religious fervor. Armies of zealots, the true believers, will descend on any writer daring to question their beloved operating system, hardware, application, or programming langu...

Today I had a pleasant e-mail exchange with another autism blogger. It reminded me of a basic truth about autism: express opinions or facts, you are certain to offend someone. You could state that autism begins with the letter "A" and someone will read into this statement something conspiratorial. "Autism" as a topic is as polarized as the current U.S. political environment. Every issue is an "us vs. them" issue. Human existence is nuanced. My ethical system is rather rigid, but I also realize that sometimes we weigh "right" and "wrong" on a metaphorical scale. Our opinions on some matters are reflections of our experiences and cultural norms. I'd like to argue science is science, but even science seems to engender endless debates. Scientists will admit funding and publishing are definitely political and socially complex. Some of the reactions to blog topics are anticipated, while others have surprised me. Allow me to explore so...

Earlier today I was rendered befuddled when someone cited the "federal standards" of the National Autism Center, implying the organization is somehow a government organization. Moments later, I heard a radio commercial for the National Debt Relief Institute. This was followed an hour or so later by a message from the Back Pain Institute. My mind was reeling. I cannot believe it is an accident or in any manner unintentional that both for-profit and non-profit organizations with various agendas adopt names that imply a connection to the federal government or to respected research universities. In the autism community, the rhetorical move of including "National" or "Institute" in organization names is widespread. The following is only one example and is not meant to focus on one particular group. The organization might be wonderful -- but the naming is problematic. National Autism Center. Since today wasn't the first time someone cited this organization t...

It happens in every support group, online or in real life. It happens at conferences and on Web-based blogs. For whatever reason, there is eventually the "trump card" that someone uses to end a discussion: Your life / your child's life with [autism | other challenge(s)] is not nearly as bad as my life / my child's life with [autism | other challenge(s)]. Someone will feel compelled to respond, "No my life is worse!" The conversation spirals downward, a complete celebration of misery, despair, and self-pity. About that point, I exit and seek out something animated to watch -- from Disney to Warner Bros, anything is better than people competing to be the most damaged human in the group. The problem is that most of us have an impulse to respond to such nonsense. We don't like to have our own experiences discounted by someone else. It feels lousy to be dismissed, especially if it is by someone unfamiliar with our personal stories. Too often, the person co...

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...

I joined Twitter on the first day of 2011 ( @autisticme ). I also joined a Twibe (seriously?) and registered with WeFollow.com to learn more about what autism-related Twitter feeds might exist. Within a few days, I was already observing a familiar debate. In fact, it the debate I described in the single most-viewed blog entry of The Autistic Me, which dates back to 2008 (see " Logos, Symbols, and Ribbons "). Various "Aspie Advocates" are still protesting the puzzle piece. I'm sure they will be protesting the puzzle piece next year, in five years, and a decade from now. The "neurodiverstiy" (ND) movement doesn't like the puzzle piece. (Everyone's brain is different: neurological diversity is a fact of life.) Honestly, I don't care for the puzzle piece either. I've written and said that I find it personally off-putting. If I am a puzzle, I'm not more or less of a puzzle than most human beings. I'm told, "Oh, no, it is autism ...

I won't delve too deeply in this, but I am familiar with the stupidity of people trying to prove I am someone else or the paid shill of this group or that. The basic story is that a blogger at "Age of Autism" (a website I do despise intensely), is trying to "prove" that Sullivan over at "Left Brain / Right Brain" is actually not the father of an autistic child, but is instead… well, I'm not even going to give it more credibility than that. It's stupidity and evidence of how conspiracy minded the extremists are. Sadly, these extremists seem to come from one side of the debate. They've sent people like me hateful e-mails, even threats. These are not people interested in learning or discussing -- they are like religious zealots. It is ironic that these zealots are often aligned with "progressive" politics. They find standing on Daily Kos, Huffington Post, and other forums. Let's get this straight, the political community gene...

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...

Tonight I read yet another post from an anti-vaccine advocate citing epidemiologists who can prove a link between vaccination and autism. Those must not be very ethical epidemiologists. Science is seldom certain of anything. It is rare that a researcher can say X is definitely, undoubtedly, always caused by Y. Only in public policy debates do we make science seem certain of things. In academic papers, everything is reduced to correlation and likelihoods, seldom are there certainties. Being certain can lead to embarrassment later in most fields. Epidemiologists are professionally constrained from stating that "X causes Y." They can offer correlation, probability, and other measures of statistical significance, but they are not experts in causation. In fact, the U.S. Code prohibits the use of epidemiology as the sole or even primary evidence in a case relating to causation. The British and Canadian courts have similar restrictions on epidemiologists. An epidemiologic study publ...

Anosognosia is the state of denying a serious disability. In the most serious cases, it is a mental health disorder, causing the deaf to insist they can hear or the blind to insist they can see. Obviously, not a good thing and potentially dangerous. I have received e-mails critical of the instances when I have described myself as disabled. People have offered many terms and phrases as alternatives -- and I have rejected these: differently abled, special, challenged, gifted, blessed, evolved, perceptually acute, sensitive, et cetera. I don't deny my limits. I know I cannot do some things. There are definitely physical impairments I have that might not apply universally. To assume I am only writing of my unique neurology is a mistake. I am physically disabled; these are mild limits and do not affect my daily existence. The neurological differences I face are not a "gift" most days. In "neuro-diversity" communities, there are those who deny autism is anything more ...

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...

Update 20 Jan 2011 : I have written on the origins and evolution of the puzzle piece logo .   Ribbons and wristbands are a fairly poor way to indicate interest in a cause. When there is a dedicated color of ribbon or wristband for every issue or cause, none of the rainbow matters. A chest full of ribbons, aligned in some proto-military fashion, seems ludicrous. So, one more ribbon should matter. But it does. The Autism Awareness campaign uses either a puzzle-piece pattern or a tie-dye pattern with purple dominant. For some reason, these do bother me more than the dozens (hundreds?) of ribbons we are supposed to associate with causes. Autistic individuals are puzzles? They are distorted, psychedelic minds? Exactly what is the message? Not that all people aren't puzzles, but to think one group is any more puzzling is a curious claim. How does this promote understanding? The claim that we are all part of the greater puzzle... no, a puzzle is a mystery. The message...

This is a rant, based on exchanges elsewhere… One of the unavoidable aspects of writing and speaking publicly about autism is that I am certain to offend someone with nearly every sentence I type or speak. I have been told I don't know "anything at all" about autism or its affects on a family. Let's be very clear: I am officially diagnosed as "high-functioning autistic" and have been "evaluated" (studied? examined?) by neurologists, psychologists, and psychiatrists. Even though I don't like labels, in this case it is not merely a label but a qualification that I believe gives me some authority to say, "Here is what I experienced." I do not pretend to know any universal truths about how autism is experienced by individuals, nor do any of the experts I know. I can only write and speak to my own experiences. Obviously, being able to write and speak publicly is a gift not shared by every individual with a developmenta...

I wasn't even thinking about writing on or talking about my story until I arrived in Minnesota. Here's one reason that changed: "You're not really helping anyone if you become some sort of activist or motivational speaker." I wasn't sure how to respond. A professor was suggesting I not tell my story. At the time, I was only considering whether or not to disclose to other instructors and students that I had some medical conditions that were less obvious than my occasional use of a cane. Anytime I'm told what not to do, I start to question why. "You risk giving people false hope if you tell them anything is possible. You should instead argue for more public assistance and protection." There it was. Silly me, I might make the mistake of being a role model and not the type approved of by this professor. I wouldn't be proving how terrible America was, how unfair life is, or whatever beliefs this professor held. She could sense I ...