The Autistic Me

We lack diversity in the autism community. Think about what you see, online and in the media. I see upper-middle class parents, able to afford iPads and tutors and official diagnoses. I see parents who have the resources to fight for IEPs and physical accommodations. I see self-advocacy leadership that has been fortunate (and hard working, certainly) to attend universities, travel the nation (or even internationally), and have forums that reach thousands. What I don't see? Most of our actual community. The real community that represents autism's downsides. The marginalized communities, ignored and excluded from our boards, our commissions, our business networks. How did my lower-income parents, without college educations, give me a chance to be more? How did they fight the odds? They did, and now I am in a position of privilege. But I don't seem to be making much of a difference. Demand that your charities seek out the broadest possible array of advisers and board...

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...

A former classmate recently asked me if I belong, actively, to any of our academic communities. The very question reminded me how outside the community of scholars in my academic discipline I am. The word "community" is overused in composition and rhetoric. Beyond overused, I've wondered if it is part of an inside joke. He clarified, thankfully, by asking which groups of scholars would know my name or my work. I asked why that matters; as long as I'm writing at home with my cats and my wife, I don't need to be known. I wasn't understanding his point. "To build an academic career, you need to be known." That makes sense, I suppose. You have to publish papers and appear at conferences to earn tenure. You must be a part of the "community" to reach the top of the field. I doubt I'm destined for the top of rhetoric or writing studies. I'm on the fringes of the community. My friend advised me to focus on the communities I w...

Saturday night, my wife and I attended the "B.U.S. 8" (Bricolage Urban Scrawl) fundraiser at Pittsburgh's New Hazlett Theater. The event supports the Bricolage Production Company's theater season. The theater, and its lobby, were packed with people. That's never easy for me, but this was something I had to do — pure self-interest as an artist. Why in the world would someone so sensitive to the stimulation that is a city go into Pittsburgh? I find Pittsburgh to be worse for my mind and body than Minneapolis. The streets are confusing and narrow; driving into the city is exhausting. Once in the city, it is one of the worst maintained places I've been. Though Pittsburgh is often listed as one of the most "livable" cities, I assume such reviews are based on the suburbs and higher-end neighborhoods. There are some beautiful spaces and great little communities within the larger city. It's just the city is… a mess. The city is also home to a thriv...

This question was posted to the "Ask a Question" page: I currently have a bachelor's degree in Special Education. I am working on getting my Master's in Applied Behavior Analysis. I am working on a Family Perspectives Assignment. I would love to get our input on what children and family needs are not met and what I can do as a future teacher. I have read some of your posts and feel that your [insight] would be very valuable. Specifically, I am looking for what teachers and educators can do to help families as a whole. There is no single answer to this question. Every set of families is different, depending on where you teach, the grade level(s), school district policies, and much more. Helping families in urban Minneapolis, Pittsburgh, or Detroit is not going to be like teaching in a "Super Zip" suburb dotted with McMansions. I live in a rural area with above-average median incomes and respected school districts. There are two autism specialists nearb...

A parent asked me if the memoirs of autistic individuals are useful for parents and educators. She also asked if memoirs might help her teen son understand himself better. I've read many of the memoirs, studying how they are written and what they convey about the autistic thought process. But, I caution against searching for too many "universals" about autism within memoirs. There might be some, but searching for them can lead us to seeing patterns that don't mean anything. At the same time, because autism is a description based on observed traits, there are shared experiences in the memoirs. My answer to this parent: yes, memoirs help. It is a way to know your child or student isn't alone. It is also a way for autistics to remind themselves that there are many, many of us on this planet. Working together, maybe we can help others appreciate what we offer society. Literature exists in a community. Readers of particular genres have a way of finding each ot...

I've come to realize that many readers of my last post weren't aware of what started the latest round of debates within the "Autism Community." Actually, this is merely a continuation of an on-going series of disagreements between two communities. If interested, here is the link: Critics Question Obama Choice For Disability Committee - Disability Scoop The basic background, as best I can tell, is that two groups don't like each other and don't want to listen to each other. On one side, we have some parent advocates and on the other we have self-advocates. That's a simplification, but it offers a basic overview. I'm not a supporter of either of the two groups at the center of this current debate. They have far more passion and conviction on issues that I don't consider my highest priorities. So, there's a debate about an Obama appointment to the Committee for People with Intellectual Disabilities. I don't even like the name of...

Around the blogs, forums, and social networks, the year began with the annual call for cooperation and civility within the "Autism Community." It is a community I'm not sure exists, but there are certainly communities. Within four to six hours, the divided community found itself in yet another round of "Who speaks for whom in the autism community?" I linked to one New Year's post on Facebook, but generally I don't get too involved in the blogosphere nastiness. It isn't much of a secret that I'm not that engaged in "causes" and don't care for the debates. We do not need to share experiences or challenges to support each other. Why do we so often begin with the assumption that if you don't share identical experiences, you can't be an advocate for autistics / people with autism / whatever description you prefer? There are a handful of parents who will never consider high-functioning, verbal, non-verbal writers, twice exce...

Forgive me, but it is time for some blatant self-promotion. The Autistic Me has had a steady readership for several years, but I'd like to see that readership expand throughout 2012. On these pages, I try to answer reader questions. I attempt to write about life as I experience it. I also try to address the challenges my traits present to friends, family, and coworkers. I do try to post something new each week, sometimes more frequently. The more questions and feedback, the more I post in response. Someone mentioned to me that there are so many websites, blogs, portals, et cetera, dedicated to autism that she only found my blog "by accident" while skimming The Autism Hub ( http://autism-hub.com/ ). The sheer number of autism blogs, both active and zombies, is astounding. A search of Blogger found 38,000 autism-related blogs. Some are only loosely autism-focused, while others are far more specific than my own blog. In this crowded space, it is difficult to be noticed...

Apparently being busy with moving, the new job, and severe bronchitis has spared me the annoyance of the ongoing conflicts within the autism "communities." I admit my interactions with some of the people involved in the latest kerfuffles have not been drama-free. I'm not radical enough for some advocates, while some parents have accused me of being too radical. Welcome to the autism community. However, if you want some insights into the conflicts between adults with ASDs and parent advocates, I suggest you visit The Thinking Person's Guide to Autism. Read the following posts and the comments: The Thinking Person's Guide to Autism: The Self-Advocate/Parent Dialogues I concluded some years ago that the autism communities are dysfunctional, but that's not really news to anyone inside the communities. There are "trolls" in all communities, people searching for conflict and people unable to simply ignore comments and posts with which they disagree. ...

One of the simple truths of life: we all judge other people. This is, according to some evolutionary psychologists, a beneficial trait. We judge in an instant in order to preserve ourselves. We see patterns in our experiences and use those to predict new experiences. If I've been attacked by men in blue shirts several times, it makes sense that I might be afraid of men in blue shirts. That's not prejudice — it's caution. When I wrote about The Mediocre, it was a reflection not only of psychology research — and there has been a fair amount of research on unconsciously mean people — it is also a reflection of experiences with unhappy people. Sadly, there are some very unhappy people online. Angry, unhappy, discontented people do make me uneasy. And you can tell that some people are "happiest" being angry. Some, but not all of these people, seek out conflict. They can't simply disagree and keep quiet about it. I had a colleague who liked to visit Christian we...

Inadvertent disclosure happens, I was reminded tonight. Because I've been on the road, I've been using several email accounts, usually based on which "webmail" solution was working best. What I forgot was that my Yahoo account was being used primarily for autism mailing lists and groups, not for anything else. So, by using my Yahoo email, the signature with links to this blog was included. Now, a mailing list that has nothing to do with autism has links to this blog. An interesting question arises, and one I'm not sure how to address — or if it is worth addressing. I do know that at least two people followed the link from my email to the blog, but no idea which two. That does matter, since some people are more understanding than others. I believe most of the men and women on that list would understand traumatic brain injuries, such as occurred at my birth, along with the other injuries that might (and only might) contribute to the traits categorized as HFA. Other...

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...

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...

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 ...

Lisa Jo Rudy, editor and guide at the About.com autism site ( http://autism.about.com/ ), recently asked readers if they feel part of the "autism community." Unsurprisingly, most answered in the affirmative. Yes, they are part of the community. But, I don't believe I am part of the "autism community" or part of one of the many "autism communities" that self-identify in various ways. The Autie / Aspie / Aspergian / etc. Communities I do not consider myself an "aspie" or "aspergian." I don't like the term "autie" and have no desire for any autism-related label. I have tried to read various forums and mailing lists dedicated to autistic members (or members with autism) and end up frustrated with the exchanges after only a few days. I've tried some groups two or three times, but their primary purpose -- discussing autism -- isn't that interesting to me. These are really online support groups. That might be wonde...

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...

I have created a Facebook Group for The Autistic Me: The Autistic Me Fan Page There is also a page for Autism Bloggers on Facebook: Autism Bloggers Group Several great autism blogs have Facebook pages. I encourage you to search for these and follow the status updates.

The word "community" is overused in academic fields, but it is the best word for what it on my mind today. I closed "The Autistic Place" today. It was meant to be an online community dedicated to issues of autism and education. The reality is, however, that online communities come and go so rapidly that what was popular a year or two ago is often "inactive" now. There are dozens of Yahoo groups that are dedicated to autism. Most of these were active five years ago, but have since fallen out of favor with users. Just as the Usenet groups and most "listservs" have faded away in the last five years, so have many online forums. The Internet has accelerated the speed with which a community grows, propers, and then declines. The timeline of the Internet is punctuated by technologies and business ideas that were "hot" for a moment. When is the last time you used IRC or read a newsgroup? Remember CompuServe? Prodigy? And Netscape was near...

This blog is continuing but in the next week or two, I will be terminating The Autistic Place -- a failed attempt to create a Web portal for all things autism. The Autistic Me has many readers and seems to serve a purpose. While I might be recognizing the impossibility of establishing a thriving portal in a virtual world with far too many autism-related Web sites, I am not going to stop blogging. In fact, I think terminating the relatively inert portal is going to free up a little tiny bit of time and energy to focus on other tasks. Updating the Drupal CMS and the backend databases proved to take a few hours every month. Yet, there were never any active users for the Web site. For those seeking autism-related portals, there are many of them. I was unable to create something better -- and definitely not able to fund any sort of advertising campaign to launch a portal. One of the things I am noticing is that the Internet itself is evolving. The mailing lists I have read for years are slo...