The Autistic Me

I thought this new study was interesting because it reveals that the instruments ("tests") used to evaluate individuals for autism differ in quality. Some work reasonable well, while others should either be revised or abandoned. The instruments tested were those administered by caregivers, not researchers or clinicians. That means these are not the battery of instruments used during a neuro-psychological screening. A "level 2" screening is one that parents, educators, or trained caregivers give to determine if more screening is necessary. A level 2 instrument is not definitive and can only, at best, identify individuals who should undergo further evaluation. Screening Accuracy of Level 2 Autism Spectrum Disorder Rating Scales: A Review of Selected Instruments Autism, Vol. 14, No. 4, 263-284 (2010) Megan Norris and Luc Lecavalier Nisonger Center and Department of Psychology, The Ohio State University The goal of this review was to examine the state of Level 2, caregi

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

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

The following mixes and matches several quite different groups, confounding people that represent various political views -- not a monolithic anti-government movement, but general skepticism: The Very Angry Tea Party By J.M. BERNSTEIN http://opinionator.blogs.nytimes.com/2010/06/13/the-very-angry-tea-party/ In a bracing and astringent essay in The New York Review of Books, pointedly titled "The Tea Party Jacobins," Mark Lilla argued that the hodge-podge list of animosities Tea party supporters mention fail to cohere into a body of political grievances in the conventional sense: they lack the connecting thread of achieving political power. It is not for the sake of acquiring political power that Tea Party activists demonstrate, rally and organize; rather, Lilla argues, the appeal is to "individual opinion, individual autonomy, and individual choice, all in the service of neutralizing, not using, political power." He calls Tea Party activists a "libertarian mob

As I read articles on, interviews of, and blogs by the family members of people with special needs, I keep encountering apologies and guilt. This is particularly true of parents and spouses who feel guilty for wanting personal time. The sense of being trapped by a routine is a regular topic. Stop feeling guilty and, please, stop apologizing for wanting to have a hobby or desiring intellectual stimulation — or wanting time to do nothing at all. For parents, realize it is draining to deal with the normal needs of any child. From medical appointments to teacher-parent conferences, raising a child is one "event" after another. Even the first haircut can be traumatic. It is normal to need time away from parenting. Yes, it is more challenging to get time away if you have a special needs child, but you do need that time. My wife has several artistic / crafting hobbies, as well as an interest in genealogy. Her hobbies are important because they are a break from work, house renovation

I spent the last two days working on two versions of my résumé: techie me and teacher me. I feel "incomplete" when I read one or the other, as if I'm not being honest about who I am. The technology résumé is modeled on samples I found online at two executive job sites. It does look nice and I am working on the wording. The special education résumé is going to take a bit more time to refine. Generally, a long curriculum vitae is the standard in higher education; trimming content to two pages was a challenge. As I edited these new career documents, I found minor errors in my full CV, errors that also existed in my online CV. It is frustrating, since my CV has been maintained since the mid 1990s. You would think a document that is updated every year wouldn't have any errors. Somehow, careless mistakes do slip past my eyes. The worst error was a misspelling of "university." The automatic spellcheck in Word should have caught that one. The two résumés are meant f

I officially completed my Ph.D in May, meaning I'm far from joining the "long-term unemployed" statistically. The problem is that I have been unemployed off and on since leaving my undergraduate program at the end of 1990. Writing is an on-going project, certainly, but actual jobs have come and gone. Now, I worry that the cycle of jobs might not even repeat. What if, instead of a job for a year or two, there's nothing? Yes, writing is a job. I know that, logically, but I would like a bit more security. I want some fiscal stability. I want to know I have a paycheck and a way to support my interests. If I sell my writing, then I won't worry so much, but I am tense. To treat writing like a job means I have to tell myself something will sell. That means I have to motivate myself every day to treat writing like a job -- but one for which I am not yet getting paid. It is exhausting. Had I landed a teaching post, I would write and teach. That was the plan with the

The Autism Hub is the best guide to autism blogs on the Internet. However, it is primarily a way to track the latest posting and topics on blogs. It is not really meant to discuss the nature of blogging or the technology challenges. To help autism bloggers keep in touch and share ideas, I am helping with the launch of a Facebook group. This group is not for discussions about autism itself, but mainly a way for the autism bloggers to locate each other. Other blogging directories and Web rings have had some issues, so this is an attempt to connect and nothing more. http://www.facebook.com/group.php?gid=129009840455825 Autism Bloggers on Facebook

Scientists are seeking what makes people different, at least genetically. What is done with this information is the realm of ethics and morality, not genetics. I'm autistic or a person with autism or whatever. I don't care what the label is. I was what I am before the label even existed and I'll be me long after some silly group of people change the labels and criteria again. What will not change (in theory) is my genetic composition. That fact of whatever genetic variation exists in my cells does not change regardless of the label and even regardless of a geneticist discovering it or not. "Autism(s)" predate genetics just as all human conditions predate their modern-language labels and cultural reactions. I am curious to know what make me who I am. What I do not want are choices made that assume my traits somehow reduce the value of my life. That's a cultural matter. We must change perceptions of "autism" within the culture; only then will the genet

After so many stories about autism and genetics in the news media, a parent asked me "that question" yet again: Would I want to be cured? What if my "autistic traits" could have been prevented? I have answered this multiple times, on this site and elsewhere. First, my life is better than that of the vast majority of humans currently living or at most points of known history. Plentiful food, good shelter, and a relatively easy existence within the American middle-class. Any complaints are the result of not considering my good fortune to be born at this time, within this culture. What parents are really asking is if their children are in some way unhappy, displeased, bitter, et cetera, for as a result of existing with autism or any other disability. I have no idea how someone else feels about being alive. None. People I can't imagine have any problems take their own lives. People I would imagine are miserable keep fighting for each extra day. Physically, who doesn

The great portal/blog Left Brain / Right Brain has a lengthy post on current research dealing with potential causes of autism. The post offers links to multiple peer-reviewed studies underway on the familiar suspects, ranging from mercury to the age of parents. Of course, no amount of research will influence the zealots, but I can at least suggest reading the actual studies underway: GENE-ENVIRONMENT INTERACTIONS IN AN AUTISM BIRTH COHORT AUTISM IN A FISH EATING POPULATION (a study of a population exposed to high levels of mercury) NEUROIMMUNOTOXICOLOGY OF MERCURY GENETIC SUSCEPTIBILITY TO MERCURY-INDUCED IMMUNE DYSFUNCTION IN AUTISM & ASD Again, I can only suggest reading and following the research. Many of the early findings demonstrate what we already know: mercury and other toxins are dangerous. What the findings do not, at least not yet, demonstrate is that mercury or other heavy metals are the primary cause of autism. Mercury exposure in adults does cause neurological damag

I am quite open that I support genetic-based theories of autism etiology, while also open to the notion of triggers. Genetic predisposition is only that: predisposition. Many genetic conditions respond to triggers, so the two are not exclusionary. Today, there is a bit more on the genetics of autism. But even the most common genetic changes in his study were found in only 1% or less of patients, Scherer says. That suggests that "most individuals with autism are probably genetically quite unique, each having their own genetic form of autism," says Scherer, of the Hospital for Sick Children in Toronto, one of 120 scientists from 11 countries working on the study, called the Autism Genome Project. As co-author Stanley Nelson of the University of California-Los Angeles describes it, "If you had 100 kids with autism, you could have 100 different genetic causes." I have written before about the likelihood of the following: [D]octors may be able to use these findings to of

Colorado mental-health counselor charged with murdering infant son - The Denver Post Police: Autism was motive in Colo. child's killing BOULDER, Colo. — Police say a woman accused of killing her infant son did it because she believed the boy was autistic and thought his condition would "ruin" her life. Stephanie Rochester, 34, was charged Monday with murder in the June 1 suffocation death of her 6-month-old son, Rylan. According to an affidavit seeking her arrest, Rochester wanted to commit suicide but didn't want to "burden her husband" with the potentially autistic boy. What can be said about this? It is troubling; I can already imagine various responses: Eventually, a genetic screen would help prevent this. (or…) This is why screening would be dangerous. Some people think autism is worse than death. This woman must be mentally ill. And so on, and so on… I think this woman was simply a self-absorbed, immature, malignant narcissist. If she had commi

This is not my usual post -- but I received my Univ. of Minnesota Alumni Magazine today and am annoyed. My Ph.D. is from Minnesota, and it is no secret I do not like the institution. My bias definitely affects my general attitude when reading anything linked to UMN. That out of the way… And although Lovaas later refined his therapy, eliminating the use of shock and physical punishments to develop what is now known as Applied Behavior Analysis (ABA)—the treatment that helped Joe Mohs—his reputation was irreparably damaged by the article, which critics of ABA still cite when decrying the treatment as cruel. I dislike how many therapists approach ABA-based therapies. I've seen therapy sessions that drag on for hours. I consider that cruel, simply because who wouldn't cave to demands after hours? I associate it with an interrogation technique. Repeat again and again, "I saw Martians." Eventually, you cave, like Orwell's Winston Smith in 1984. The professors at Minne

I have a long list of things I want to organize. The list dates back to the late 1990s, as some collections never stop expanded. Some of the items I'm trying to organize: 1. Books. Most are shelved by topic and author while others remain in boxes. Books are entered into a database, too. I was using EndNote, but migrated to Bookends. I have been creating duplicate data online via Goodreads and Visual Bookshelf. The data from Bookends is also on my iPod Touch so I know what I own when shopping. 2. CDs. I love music and have a lot of CDs, which I prefer for sound quality. Yes, I can tell the difference until they up the bit rate for all downloads. Classical music, jazz, and show tunes really do sound "choppy" and "hollow" at 128Kbps. The CDs are piled up downstairs as I create index card dividers for them. I have the CDs sorted by artist, year, and title in an Excel spreadsheet, as well. 3. Fonts. I have thousands of commercial and registered shareware fonts. I hav

I am sick and tired of the "Bill Gates has AS" and "Big Bang Theory is about a group of people with ASDs" lines of advocates who think they are helping. And yes, I've mentioned this to the other Ph.D.s with autism… of which I am one. It is rare to be a genius or a great artist or a professor. It is rare to be on the Fortune 400 or to be performing on Broadway. Autism is not a superpower. It is a difference. I've met people with AS and PDD-NOS diagnoses who feel horrible about themselves because they aren't "smart like Temple or special like Tammet." The reality is, few people are! We should not be making people feel guilty for not living up to a mythology. Only ten percent of people with any form of autism display savant abilities. Ten percent. Yes, that his much higher than the general public, but it is still one in ten, not three-fourths, on half, or even a quarter of people with ASDs. And those of us with "special talents" are not

Earlier today someone asked, "Do you really write 100 pages or more a month?" Absolutely. I cannot imagine any serious prose or dramatic writer produces fewer than 15,000 words a month and much closer to 25,000. Most of what I write is for myself, but a substantial amount is intended for future publication or production. Also, writing a page is not the same as keeping the page. I have averaged more than 300 pages of "non-personal" writing each six months for the last two years. Most of this has been academic, since I was completing my doctorate. Since January, I have written three full-length screenplays, totaling 297 pages (excluding title pages), and six magazine columns (1000 words each). I'm also working on several other projects I hope to complete before the end of June. Add my personal writing, blogging, presentation handouts, and website content and the amount of writing exceeds 1000 pages every six months.

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

This morning I awoke to Mimi and Alex purring next to me. It is overcast, which I like, and cool. As I was doing the dishes, I thought about how fortunate we are right now. We have a house, incomplete as it is, the yard is looking much better this summer, and graduate school is over for both of us. In most ways, we are in pretty good shape. The only thing bothering me is the same thing that has been an issue for two decades -- I'm not contributing much to our position. Everything we have is because of my wife. The plan was that I would locate a teaching post after graduate school. I would then be providing the income that would allow us additional security. We could settle down and relax a little. Instead, I'm unemployed with student loans looming over us. I'm working to pitch more writing. I've tried working on an autism book, but I don't know what I have to express that is original. My monthly column and other projects are only a few dollars here and there. I'