The Autistic Me

It's apparently that time of year when we're expected to increase awareness of autism (which I forgot until Apple posted a video). Yeah, because the millions spent by Autism Speaks, the proliferation of puzzle pieces and ribbons, the endless public service announcements on Internet radio feeds, the countless feel-good "news" stories and on and on haven't done enough to increase awareness. People are aware. Nobody needs me to blog about awareness, since readers of this blog are pretty obviously aware of autism and atypical neurology, neurodiversity, or whatever you wish to call it. At this moment, I'm taking a short break from editing a video about autism, the arts, and education. If we want to increase awareness of some aspects of autism, how about debating these random thoughts? 1) Autistics and those with autism-like traits should be the ones speaking, writing, illustrating, signing, painting, composing, et cetera, about what autism means. Allies shou...

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...

My wife and I like to take walks along the main street (actually, Third Street) of the nearby township. It is something out of a movie — even the park gazebo was donated to the community after a film wrapped. My wife said last night that the village across the way looks like something built for a model railroad layout. We live in Middle America, Hollywood-version. And so, walking past the large, sky-blue puzzle pieces taped to store windows, the blue ribbons, the flyers, all these signs of "Autism Awareness" neither surprises nor pleases me. If anything, it annoys me to have "Autism" plastered all over cars, stores, and various products. I want to shout, "Stop it!" (Want to know more about the autism puzzle and the perspective of autistic adults? See:  http://theautisticme.blogspot.com/2011/01/more-on-autism-puzzle-piece-logos.html ) Personally, I hate stickers and magnets on cars. Bumper stickers? How can you put a sticker on a huge investment, r...

April is autism something-or-other month, depending on whom you ask. It's all about "acceptance" or "awareness" or "diversity" or "celebration" or "pride" — and I'm sure a few other concepts. To this, I respond with a busy, preoccupied, "Whatever." I get that people want to find support, inspiration, connections, and resources. I'm all for helping people, especially autistic teens and adults, find ways to achieve all they can. If autism month helps people find those supports, great. But, what I dislike is the absurdity of the news media during this annual panic-feeding month. Put the risks in context: http://www.nytimes.com/2014/03/30/opinion/sunday/how-to-think-about-the-risk-of-autism.html You want to know what "caused" my autistic traits? Birth trauma. Period. And sure enough, that's number two on the list of risk factors, right beneath an autistic twin. But, easy explanations aren...

It is that time again. It's that time of the year when I see a spike in traffic to some old blog posts on puzzle pieces and autism awareness. It is either Autism Awareness or Autism Acceptance month, or something along those lines. I get messages asking if I'll discuss "promoting autism awareness," which seems a bit odd to me by now. Awareness? Who isn't "aware" of autism? The media (including some celebrities) have done a great job promoting "awareness" of autism. There are plenty of news stories and events promoting the ideas of an autism "epidemic" (which implies a contagion, but that's a rhetorical debate), various possible causes, and the "suffering" of families, especially parents. I don't know how anyone cannot be aware of autism. Acceptance? At least it sounds better than tolerance. I don't want to be "tolerated" — I want to be included and accepted for the person I am. I can support a camp...

The brain is amazing. It's both fragile and resilient. While researching written language and autism for my doctoral degree, I learned a small fraction of what scientists now understand regarding language cognition. The question I had, and one many others have, is why some autistics are good at written or symbolic language communication, but have either limited verbal abilities or are non-verbal? How can someone write and not speak? Why would someone prefer sign language or pictographs to speaking, especially if he or she can speak? The simplified answer: language is not one thing. Language that is seen is not the same as language that is spoken and heard. Symbolic language and auditory language differ. Braille involves yet another form of language cognition. Somehow, our brains manage to connect and decipher several different "languages" we experience. Most people can "read" postures, expressions, icons, symbols, colors, sounds, gestures, vocal tones, spo...

Ari and members of ASAN deserve credit for trying to increase awareness of adults with autism and their unique needs. They are voices that should be heard. But, what of adults with autism spectrum disorders who disagree with some dominant ASAN positions? It often felt those were not only unwelcome, but disliked by ASAN members. Understand: I encourage people to learn about ASAN and know that it is serving an important purpose. If your personality is suited for it, I think ASAN would benefit from gaining more members who can work within an activist organization. I'm definitely more restrained in my mindset. I'm also not aligned with the dominant political views of ASAN members, which was uncomfortable. Over time, ASAN will evolve and I have great hope that it will develop into an organization with divergent views. Ideally, there will be a realization that we want services, supports, and tolerance. Not all autistic people share the same views on autism. At the Autism Society of A...

With Autism Awareness Month beginning, so are the annual debates on various online forums and within the media. For the next month, expect stories on the debates, the controversies, etc. involving autism. On LiveJournal yesterday there were more than 50 posts within a few hours on the puzzle piece icons / logos used by various autism-related organizations. The vast majority of posts were from people with ASDs who view the puzzle quite negatively. One reason for the depth of distaste is the association of the puzzle with Autism Speaks. If you really want to get people arguing, mention Autism Speaks, Generation Rescue, Autism Society of America, and Autism Self-Advocacy Network within any forum. The views of these organizations are often not grounded so much in logic as faith. Some people really, really dislike one or more of these groups. The groups themselves fight for funding and public attention, plus there is local-level animosity in some places. I am a member of the Autism So...

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...

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...

Why in the world CNN and many other media outlets decided to give "equal time" to various autism experts like Jenny McCarthy is beyond me. This is like giving equal time to the Flat Earth Society when discussing El Niño and ocean currents. McCarthy, Kirby, and others are using Autism Awareness Day to promote misinformation, speculation, and conspiracy theories. I was going to rant and rave, but I know the anti-vaccine mob will never be convinced of anything. We could present a thousand reports on genetic predisposition, genetic triggers, and alternative environmental factors... it would not matter. Some, like myself, believe there are environmental triggers, but the popular media can't write a story without mentioning MMR vaccines. Autism clusters in California overlap specific agricultural crops. This points to anything from soil contamination to the residual pesticides wafting in the local air. Who knows? I certainly would be curious to map asthma and autism,...

Today the media are reporting an analysis of autism rates in California since the removal of thimerosal from most vaccines. The autism rate, or more accurately the rate of diagnoses, is still climbing in the state. Study challenges drug's role in autism By Jia-Rui Chong, Los Angeles Times Staff Writer 5:15 PM PST, January 7, 2008 The prevalence of autism in California children continued to rise after many vaccine manufacturers started to remove the mercury-based preservative thimerosal in 1999, suggesting that the chemical was not a primary cause of the disorder, according to a study released Monday. The analysis found that from 2004 to 2007, when exposure to thimerosal dropped significantly for 3- to 5-year-olds, the rate continued to increase in that group from 3.0 to 4.1 per 1,000 children. "If mercury exposure in vaccines was a major cause of autism, then the number of ... affected kids should have diminished once they were no longer exposed to thimerosal," said Dr...