The Autistic Me

I posted a link to this article a few days ago: In Study, MRI Scan 90% Accurate Identifying Autism The full story cautions that this is merely one study, but it is interesting. From the story on CNN's website: Scientists are finding more pieces of the autism puzzle of with the help of MRI scans of brain circuitry, according to a study published Thursday online in the journal Autism Research.  By scanning the brain for 10 minutes using magnetic resonance imaging, researchers were able to measure six physical differences of microscopic fibers in the brains of 30 males with confirmed high-functioning autism and 30 males without autism. Here is my question: What is confirmed high-functioning autism? HFA is not a standardized diagnosis, as it does not appear in the DSM-IV. It is a subjective diagnosis, and there are constant debates as to what differentiates HFA from Asperger's Syndrome or PDD-NOS. I have even heard discussions claiming it is easy to confuse "moderate...

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...

I've written many times that the diagnostic rate for any condition is not the same as the actual prevalence. Examples of sudden "explosions" in diagnoses, abound, from various cancers to mental health conditions. In some cases, diagnoses were impossible. In others, conditions were clarified and reclassified by improved science. Anyway... these are for consideration. I generally distrust some of the sources, but the links are interesting enough that people can read them and reach their own conclusions. The odds are, most people have conclusions and will decide to agree with those supporting an existing bias. From Left Brain/Right Brain is this good link: New Statistics Due. Autism Rate 1 in 100? And here the above blog's predictions about the media coverage are somewhat proved: David Kirby on HuffPost I don't care who you do or don't believe. What matters is we are about to be buried by another round of scary statistics. Parents are going to hear "1 in 100...

Whether I consider my oddities "autistic" or "birth trauma" (I vote for "complex entry into life"), I am certainly not normal. My wife will attest to this. Parents of special education students ask if I would want to be "cured" of my oddities. This question is one with which I struggle, since I both value my abilities and curse my lack of social skills. If being "normal" would mean that I must surrender some of my skills, then I would not be me. To not be gifted, a loaded word I admit, means to surrender analytical skills I value and admire in others. I admire scientists. I admire men and women solving problems with thought and through experimentation. I don't like the idea of being as ignorant and sloppy as the people I encounter. I also have no desire to be as slick and manipulative as the most successful people I have met. I'd rather be honest and know myself. I believe there is a point at which great salesman loses...

The thing I want most... sleep. I want at least a routine cycle of sleep, regardless of the hours. Instead, I sleep randomly and it annoys me. I'm exhausted much of the time when I am awake. To sleep... perchance to dream! I spent the last few hours learning about a database tool. I experiment with technology when I cannot sleep. Really, I should be writing or focusing a lot more on other projects. I have a long enough list of projects that nothing new should be allowed. I need a lot more focus when I am awake. The "ADD/ADHD" label enters my mind at these hours. What if the diagnosis of ADD/ADHD was correct years ago? Was I any more or less productive with that label? With the medications? I don't remember. Too many things I do not remember. I want focus. I want to finish projects.

I wish I could say I am shocked... but I'm not. The announcement below is probably going to become the norm. Minnesota: leading the way in autism acceptance, I suppose. Special Supports to be Discontinued The University of Minnesota is terminating the Strategic Education for Asperger Students pilot program. The University of Minnesota is announcing this change in disability services effective June, 2008. This change will affect all students registered for services related to ADD/ADHD, Asperger's Syndrome, High-Functioning Autism, and PDD-NOS. With the SEAS pilot program ended, the University has decided that DS specialists should work with students only on academic accommodations (extended test time, notetaker, etc). Specialists can no longer work with students as they have with SEAS. I have been told the basic implications could include: The end of scheduled appointments (no longer meeting weekly or monthly) No special support for other issues like time management, so...

We are in the process of moving, which is overwhelming for most people. In my case, it's physically and emotionally debilitating this week. I am exhausted just thinking about all the productivity lost during the last year... and now I will lose at least another year. Worse, I know this move is temporary because I would never settle here — meaning I'll lose productive time again in a few short years. When we moved from California to Minnesota, I had carefully arranged a dozen or so projects I wanted to complete in the coming months. Those projects are still in boxes and in disarray. Most were plays and short stories. There are a few computer projects, and several Web site updates. These are all sitting in boxes, frustrating me. I need a better system. I have a portable file box labeled "Current Project" but not every current project is in the box. It's maddening. I need order! Time lost to panic, to organizing, and to yet more panic is time lost forever...

"Did you know Bill Gates and Tim Burton are probably on the spectrum?" Can we please stop such nonsense? I wouldn't want anyone to claim to know my various mental and physical conditions, much less publicize such assumptions. We have no right to try to associate someone else with an advocacy position, as if having some celebrity with a medical condition is essential to "the cause" (meaning fundraising, usually). The more people try to associate famous people with autism, ADHD, seizure disorders, and a host of other conditions, the more I hope I'm just a intellectual oddity with some creativity -- no disorders, injuries, or special conditions involved. I think attempts to find indicators for various conditions is getting so ridiculous that every geek, techie, goth, cyberpunk, loner, poet will be classified as disabled. Not that I'm currently all of the preceding, but the checklists presented for "the spectrum" is getting absurd. Simpli...

Completing tasks is a real challenge for me. This is definitely why I was diagnosed with ADHD years before high-functioning autism became the official label for my odd mix of traits. ADHD with seizures, repetitive movements, and a long list of other ill-fitting characteristics. I have a lot of incomplete projects dating back more than two decades. I also have many completed projects I never seriously tried to publish or distribute. In other words, I do a lot of writing, sketching, programming, and planning without following through to the expected conclusion. What's strange is that I do complete, with a lot of anxiety from a perfectionist streak, school work, magazine columns, grant applications, handouts for my students, and projects assigned by other employers. So, it isn't everything I don't complete... just the projects I seem to really want to complete for myself. My perfectionism is limited (somewhat) by deadlines, but when there is no deadline, I never ...

I was reading LiveJournal today, the Asperger's Syndrome community, and encountered the recurring topic: "I'm an Aspie, but my therapist denies it." Okay, I'm not a therapist, but I'm about to play one online. (That's sarcasm.) I believe most therapists, regardless of their educational backgrounds, are now quite familiar with the terms "Autism Spectrum Disorder" and "Asperger's Disorder / Syndrome." It takes a lot of hubris on the part of a patient to assume that he or she knows more about autism than a clinician. It takes even more hubris (or something else) to self-diagnose yourself with any mental health condition. People wonder why I think autism is approaching the level of "trendy" once reserved for ADD/ADHD need only read any of the online communities for more than three weeks. Yes, there are a lot of people with an ASD in these communities. There are also a lot of people looking for a mix of explanation ...

Though the "autistic" label is fairly new, I have been labeled many things in the past. As I think about the past and present experiences, I realize that including bits and pieces from my evaluation in the book I'm completing will help others with similar experiences. I know I am not the only autistic person to have been considered slow or even mentally retarded. I also have read numerous online discussion groups in which people have posted about being diagnosed with OCD, ADD / ADHD, social anxiety, and even PTSD. I'm not sure how the Post Traumatic Stress Disorder fits with autism, but several HFA/ AS individuals report this as an initial diagnosis. My wife is certain I was, am, and always will be HFA. My mannerism, my speech patterns (poor affect, or even inappropriate affect), and my stereotyped movements under stress are mere bits of the picture, as they say. The new diagnosis was not based on any new evaluation results. My original (second grade...

There are people I consider mental health hypochondriacs. They read a list of "symptoms" and self-diagnose themselves with everything from attention deficits to autism disorders. If there's a way to excuse a lack of success, self-control, organization, healthy relationships, and general contentment, these people will find it in a book or on a Web site. Worse, we have parents and teachers labeling students in ways that might end up doing real harm to future generations. I'll offer the standard disclaimer: I do believe there are disorders and conditions affecting a lot of students. I also admit that some might be more common than in the past — might be, but not necessarily are. What qualifies me to say this? Aren't I being a hypocrite if I'm accepting the label of "autistic" and writing about my experiences? Blunt answer: I was seriously injured during birth. I do not doubt my medical history is being overlaid with current trends in psyc...

As I compile my notes for essays and a book, I realize how much easier it is to be considered "different" your entire life versus a late-in-life diagnosis of Asperger's Syndrome. The more I read about and communicate with AS students and adults, the more I appreciate their unique experiences. I was never considered normal, so my eccentricities were tolerated. Independent study was offered more than once, which I loved. When you are perceived as perfectly normal, I imagine things must be more difficult. No one believes you when you complain about sounds, smells, textures, or colors. You're considered moody or depressed. Any difficulties in class are confused with learning disabilities or ADD. At least no one expected normalcy from me.