Wednesday, November 4, 2015

No NeuroTribes, Not Much Else...

I have been away from blogging to deal with some family matters, and I honestly don't have much to add to the "autism community" at this time.

One of the questions that I've received a few times during the month, "Will you review NeuroTribes?"

Although I consider Steve Silberman's work important, it just isn't something of interest to me right now. Maybe it would have been a few years ago, and maybe it will be in the future, but at this time my life is busy without giving too much thought to autism and its various feuding communities.

My days are spend writing, editing, and otherwise working like most freelance writers. My family life is the same as most other 40-something married adults. In other words, I can't really think of any way in which my autistic traits are having much affect on my daily life at this moment.

This blog was meant to explore how autistic traits, regardless or their origins, present challenges (or offer benefits).

Right now, all I can offer is that I've discovered what works best for me: freelancing, on my own schedule (but with deadlines), so I can work from home and at odd hours. I have a lot of deadlines lately and some changes that have consumed a great deal of my "free" time.

I'll try to offer something insightful soon. Or send me some ideas over on The Autistic Me Facebook page!

Friday, September 18, 2015

Listen… and Help Others Hear

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 members. Remember, much like our schools, your community is nothing like some other communities. From my nice exurb, I can forget what inner-city and poor rural schools are like. I can forget what parents without means have to fight every day. Coming from a 72% Hispanic community, with Hispanic leadership at all levels, I can forget what it is to have minority voices silenced.

Remind yourself, there are voices with experiences unlike yours or mine. We need those voices in leadership positions. Don't make excuses. Reach out and add those people to committees and boards. Involved them. Make allowances for their special needs and socioeconomic situations, too. If you have to find ways to help someone be heard… then find those things you can do.

Don't make excuses. Make change.

Saturday, September 5, 2015

CUNY Research: Autistic Adults and Foodways

I am posting this by request, to help a doctoral student.


My name is Jungja Park Cardoso and I am a Ph.D. candidate in the environmental psychology program at the Graduate Center of the City University of New York.

I’m seeking participants for my dissertation research that investigates how autistic adults with different conceptions of autism negotiate and navigate the food environment in the US. I’m particularly interested in learning about how certain environmental settings and situations are considered problematic or supportive in relation to everyday foodways - the beliefs and practices involved in growing food, going grocery shopping, cooking and eating food. All information that is collected about participants will be kept confidential. Participants will be entered into a raffle to win one of twenty $25 e-Gift Cards. Once I have completed my study, I will share an electronic copy of my research findings with research participants.

The research consists of two phases:

1) Online Survey and

2) Online Interview or offline Interview.

Your participation will contribute to a greater understanding of a food environment that is friendly to autistic adults.

This study has been reviewed and approved by the City University of New York Institutional Review Board (IRB). (Protocol #: 2015-0724)

If you (or someone you know) are interested in learning more about this study, please contact me:

Jungja Park Cardoso
E-mail: JPark1 @
Or visit

(I apologize in advance if you feel disrespected because I use the term “adults on the autism spectrum” instead of “autistic adults” or “adults with autism” in the survey. The survey is designed for individuals with different understandings of autism. I’ve tried to choose a more neutral term to the best of my knowledge.)

Thank you in advance for your time and consideration.

Jungja Park Cardoso
Ph.D. candidate, Environmental Psychology
The Graduate Center, City University of New York
365 5th Ave New York, NY 10016

Tuesday, August 18, 2015

School - Better or Not?

School must be better today than in the 1970s or 80s, right? Especially since we know so much about autism.

Probably. Maybe. Or it is bad in different ways.

As students, teachers, support staff, administrators, and others head back to campuses across the United States, I anticipate the annual questions about what to expect. Unfortunately, there are no good or easy answers that apply to everyone.

Be sure you know what your rights and your student's rights are, and are not. They vary by age, type of school, and state. Remember that federal regulations are only minimums, and states can have stricter requirements for providing supports to students with special needs.

Learn what you can about the alphabet soup of legislative requirements and federal programs. IDEA, ADA, IEP, OSEP, OVR, and so on.

Work with teachers and administrators, not against them. Start by asking how to help them help you and your student. What documentation does the school need? What is or isn't acceptable documentation of a disability? What services are available in the district? Take notes and do your homework.

You can know all about the American's with Disabilities Act, the Rehab Act, the Individuals with Disabilities Education Acts, and all the other "mandates" and still run into barriers in school, at all levels.

Autism affects communication and social interaction, and many autistics have interests and passions outside the norms for their social groups.

Other students, and plenty of teachers, might try their best and still not understand how to deal with the autistic in a classroom. In time, someone so different is either avoided or pushed aside. Personally, I'd rather be left alone and avoided than bullied. I've seen both reactions to autistics in classrooms over the last few years; things have not changed in human nature.

There isn't a good solution for the challenges arising from how autistics interact with others in a classroom. At best, I can offer only the advice to listen to the autistic and communicate with teachers. At the college level, this is complicated by FERPA limitations on teachers, limiting the ability to discuss a young adult with his or her parents. FERPA (the Family Educational Rights and Privacy Act), for all its good intentions, can create barriers to helping students with special needs — which goes back to the value of communicating directly with the autistic student.

My university experiences since 2004 have not been great. My social skills have improved, yet not nearly well enough to avoid alienating others. I'm still "odd" enough make others uncomfortable, though I doubt most people could say why. Social skill deficits cannot be legislated or regulated away, and people aren't going to always overrule their instinctive reactions to difference.

I'm sometimes asked how I feel about making autistics act "more normal" through various therapies. I'm ambivalent. Being different has negative consequences in school and at work. Personally, I'd like to be a lot more normal, but what is the best way learn that normalcy?

Maybe the best lesson school taught me: I was, am, and will be an outsider. It was the lesson of the 1970s elementary schools and the lesson of twenty-first century universities.

Tuesday, August 11, 2015

(Not) Being Consumed by Activism

Autism advocates I admire have recently shared their "burnout" with online followers. These advocates are not seeking sympathy, nor are they wallowing in self-pity. Sadly, they must anticipate negative reactions before taking a break from online and real life activism.

I separate online from real life because the online world can be more exhausting and far more negative than the physical spaces in which advocates operate. Online statements are easily misconstrued, taken out of context, and magnified both intentionally and unintentionally by readers. Trying to maintain civil discourse online can be an impossible task.

In the physical world, what I still consider the real world, people pause before speaking. Rarely can they hide behind anonymity before being cruel. Public cruelty can at least be exposed in many settings. Online, different rules seem to apply to human behavior. Decency is lacking.

When I fail to follow a particular Twitter account, like a Facebook page, or refuse to blog about a particular cause, people take it personally. If I liked, followed, and blogged about every cause that every visitor suggests to the Autistic Me, I could add dozens of new inputs to my already cluttered social media streams.

It is perfectly reasonable to separate my life from nonstop activism. Thankfully, I have never had a problem with taking a break to enjoy dining out, taking drives, visiting gardens, and doing other things with my wife and my family to remain healthy. I make no apologies for putting my family and myself ahead of general activism. If I am not well, I cannot be an effective teacher or activist for others.

The advocates I admire have too often placed the needs of others ahead of their own health. Great men and women have exhausted their minds and bodies because others expect them to do so. If you are asking an advocate to support your cause, to add to your page, to follow your Twitter campaign, or making any other requests, you need to consider that the individual from whom you seek help might also have special needs… Or simply be a tired, overworked normal human being.

Please, if you are an advocate, take care of yourself. If you rely on advocates, remember that they have needs, too.

Tuesday, August 4, 2015

Blogging Cycles

In 2011, there were 169 posts to The Autistic Me. That number has steadily declined, by almost half every two years. For 2015, only 17 posts have been composed. (The blog started in 2007 and took some time to grow.)

The blog activity is a feedback loop, or an incentive cycle. As readership and responses fell, so did my impulse to post new content. With less new content, there was less reason for readers to stumble upon the blog. The decline of RSS readers, the decline of various Autism portals, and a general shift to social media contributed further to the decline in activity.

How many times can I post about…
…the challenges of living in or even navigating urban settings?
…the sensory overload of mass transit?
…the exhaustion that follows social events?
…the (un)employment situation for people with physical and neurological challenges?
…the insular nature of academia?

The posts here simply aren't that varied. The same topics repeat.

I pulled the "Ask a Question" link because the tone had descended and the content wasn't useful.

I'm not sure what I can or should post anymore. The old issues are tired and worn. I'm not interested in most of the current debates online and dislike the tone of posts (and comments) I read.

Maybe I'll come up with something fun and new. For now, I admit that the blog has been slow and boring. Let me know, via Facebook or Twitter, if you have any good ideas. Suggestions might give this blog new life.

Thank you, to my followers, for sticking around for so many years.

Tuesday, July 14, 2015

Music and Life

Music is important to me. It's not quite an obsession, and I'm not a scholar by any means, but music occupies a significant part of my life.

When I work at my computer or write at my desk, I like to listen to music. It's in the background, blocking all those other sounds that distract me. Music is my "white noise" while I work on projects.

Sound quality matters to me.

Recently, I reimported my favorite CDs into iTunes because, back in the day, 128kbps was what my hard drive could hold, and I skipped so-so tracks back then. But, the tracks sounded "tinny" to me with better headphones, earbuds, or via the home stereo. At 256kbps I can't tell the difference between the CD with these tracks with headphones. (Maybe it is my age, but I doubt anyone could tell the difference unless sitting in a silent room.)

I opted against ALAC / AIFF for now because of space. Yes, I have that many CDs and I'm not always connected to the interwebs. If we someday buy a RAID system, I'll migrate my music library to lossless files formats. Even then, I'd only reimport the music I listen to on a regular basis, as I come across discs that I liked a lot.

Completeness matters, too.

I don't like "holes" in my music library, not even if an album by a favorite band was only okay. There's something about missing a CD that bothers me, like missing a book from a series. Bands and musicians evolve; if you're missing one album, you're missing part of the complete story of that musical evolution.

My Collection

My tastes are not that unique for someone born in the late 1960s. Being raised during the 1970s, I appreciate what might have been the most varied period popular music. Give me the Beatles, Stones, Grateful Dead, and Pink Floyd. I also appreciate surf rock, with the guitars and drums. There's a uniformity even researchers have identified within 1980s pop that lacks the complexity the previous three decades. Yet, I admit that 80s pop with its synthesizers and drum machines is comfortably familiar. The "New Wave" and "Post-Punk" sounds of The Smiths, The Cure, Depeche Mode, The Police… everyone knows the 1980s KROQ playlist.

Celtic, classical, jazz, techno, pop, and metal — I own a bit of everything.

Music reminds of people, places, and events in our lives. Each CD I own means something, a connection that compelled me to add to my collection.

Thursday, July 2, 2015

Writing as the Only Choice

In response to several queries from friends, a bit more elaboration on my plans.

I applied for a number of teaching posts and have now received the standard letters proclaiming an "overwhelming number of highly qualified candidates" for each opening.

The decision to not teach part-time as an adjunct, at least for now, was best for me. I'm too tired to drive two hours (or more) to teach one class in the fall for 80 minutes. Also, teaching part-time where I wasn't renewed full-time wasn't going to be comfortable. (The hiring process still angers me.) The pay was fair, but the situation would not have been healthy for me. If I teach again, it will be somewhere more welcoming.

My passion remains creative writing, and the rhetoric of stage and screen — followed closely by the visual rhetoric of page design (including digital "pages"). Give me scripts, sets, and camera angles. I'll ponder what makes a great play vs. a great movie, and how both are evolving in our saturated media experiences.

Give me histories of printing technologies and digital type. I'll passionately debate why "hinting" isn't as good as designing font data for visual sizes (Display vs. Body vs. Captions, for example).

In the university teaching interviews I've had since 2009-10, most have asked if I would rather teach writing or be writing professionally. I've argued that teaching informs my writing, making it better because you constantly learn through teaching. Told to choose, though, I always answer that given no choice, I would rather write and hope my audiences learn from my words. Isn't that still teaching? (Trying to "thread the needle" as most writers I know also have to teach or have other careers.) I'd argue academic writing is creative, but not how we currently teach it. Maybe I don't interview well when I do get that far in the process, at least in academia.

This is why I am writing primarily, and taking on some non-profit work on the side. Teaching is important, and I will teach through my words (sometimes, teaching that someone else is smarter than I am via my mistakes).

I will miss teaching. I might teach again, someday.

But, when forced to make a choice, that choice was what it now is… creative writing in all its forms.

Tuesday, June 9, 2015

Emptiness and Paths Ahead

I completed my doctorate in June 2010. It is now June 2015. Five year after earning the doctorate, there's little to show for it.

I have taught, but at my last post I was not on the tenure track and that is unlikely now. I might be a lecturer or adjunct here and there, but that's not the career I imagined. It's also not the path my wife had imagined, and certainly not the path that we went into debt for, yet again.

Yes, I've applied for teaching jobs. No, I don't really want them, but teaching is the only thing I seem to be able to do, in part because of the schedule. Unfortunately, my degree choices weren't the wisest. The doctorate was an accomplishment, but to what end I don't know anymore.

My wife needs stability. She likes routines and order as much as I do. We both hate any reminders that we are powerless. We organize our spaces, because that is something we can do. Unfortunately, we can organize books and things, but not my career.

We won't know for some months if I have another teaching job. I (might) need the job. I dread the job. It comes too late to transform our lives into what I dreamed of for her and for me.

We have a decent life, but it feels incredibly incomplete. Empty. And I don't have a good path forward right now. A path, but nothing certain and nothing stable. The lack of certainty and stability… that familiar dread that we have no security.

Tuesday, June 2, 2015

Never a Good Autism / Autistic Scholar

Years ago, when I entered graduate school, I imagined helping students and teachers connect via technology. I wanted to study "writing across the curriculum" and online writing labs. These interests led me to a doctorate… but by the time I completed the degree I recognized that my career was already off my planned course.

When I decided that writing about autism and education would be beneficial to someone, beyond myself, part of that decision was based on the (yes, we should admit this) trendiness of disability studies and all things diversity-based. I could do some good, and the topic would be desired by other academic scholars. It was a win-win.

Instead, I found myself drifting back and forth between what I love (creative writing and the rhetoric of fiction) and what I believed I had to do to secure a teaching job (something autism-related). Not that I don't care about autism, but it isn't nearly the interest for me that it is for some other autistic scholars in writing and rhetoric. I care… sometimes. Most of the time? I want to study what makes a story effective.

My one "autistic" role is as a board member for a regional autism charity that helps connect people to services. I attend two-thirds of the board meetings, schedule permitting, and offer some ideas, but I'm not an active volunteer like many of the parents of autistics manage to be. I'm not involved in ASAN (Autistic Self-Advocacy Network) or any other autistic-centric group. I have no desire to attend "Autreat" and I cannot recall the last time I looked at the online autism communities (probably when I was in graduate school).

When I read about autism as a topic at writing conferences, I don't celebrate this as a "good thing." For all the slogans such as, "When you've met one autistic person, you've met one person," the reality is that the autistic scholarship seems to convey there is a commonality, beyond sharing a diagnosis.

The "autism community" these scholar-advocates know is not that large. It is not universal. The "supportive academic homes" they have found are not the norm. Their experiences of being accepted and celebrated in academia are not mine. And they are not the experiences of so many autistic [former] students I have met.

Academia is not a wonderful, loving, supportive place that stands apart from other workplaces. No. Schools are workplaces. They can be great and they can be lousy. And my experiences have generally been pretty lousy.

At these conferences at which scholars in the audience will congratulate themselves for embracing and celebrating autistic scholars, I find myself an outsider. I don't enjoy the social events, the small talk, the need to schmooze to become familiar and eventually land a tenure-track job.

I'd be the one limping about, wanting to scream at the sensory overload, trying desperately to present one or two papers here and there to prove I am a scholar. And I hated it. I hated trying to read social cues, say the right things, and engage in discussions that didn't appeal to me.

My goal? Teaching writing as effectively as possible.

There is nothing "political" in my pursuits, and I have no grand scheme to promote Marxist critiques or to engage in some sort of social justice. I just wanted to learn how to help students master the dominant American Standard English (sorry, the Anglo-Colonial Dominant Language Tradition). (Yeah, yeah, teaching is "political" by nature… so I taught at two business-centric universities.)

You want to help students? Teach them to communicate effectively within their families, communities, workplaces, and so on. To teach effectively, I don't need to know about the social construction of ablism or what the latest neuroqueer critical theory might be. I need to know how can I help first-generation students and non-native speakers and those with cognitive difference engage clearly and effectively with the world in which they exist here and now. Does that world stink? Maybe. But, if you can't communicate, you can't change things.

So, I wanted to teach writing and teach it well. I wanted to use technology to help teach writing. That's what I wanted to do.

I didn't want to study which dead authors might have been autistic, unless that was going to help me teach Hmong- and Spanish-speaking students the difference between who and whom in a business document. I don't have time to address the rhetoric of social media unless that helps me teach first-year composition students the value of proper citation formats — which they must master for other courses in college.

Nope, I'm just not an "autistic" scholar.

Nobody expects autistic professors in the STEM fields to focus on autism and physics or autism and robotics. (Though there are some very cool projects using robotics to help people with special needs, those are applied projects, not the theory common the doctoral research.) No, it was my choice of field that somehow came with the mandate to be a disabilities scholar, if I wanted to remain and rise in the discipline.

Do I believe there are areas of study that overlap writing and disability? Absolutely, especially in the usability and user-experience areas that I am willing to research. I do care about accommodations. I want to solve problems of writing and reading, so I am eager to use technology to solve challenges. But, I don't care about so much else that seems to be the majority of "scholarship" in my field.

Since I do not have a teaching post and might not pursue another post, I have been reflecting on how strange it is that colleagues assume I should be interested in questions that don't interest me and seem disconnected from my life. I'm sure those scholar believe they could (and have tried) to explain why I need to care about the deconstruction of disability in discourse communities. (Uh… whatever?)

I just want to know if technology X will help person Y communicate ideas and concerns A, B, and C to the world. If that wasn't a good fit for any tenure-track post, so be it.

Now, I have some plays and movies to write. And more people will see any play that is produced than would be touched by the scholarship I have produced. See? I'm not wrong to care about the rhetoric of fiction. The successful stage adaptation of Mark Haddon's The Curious Incident of the Dog in the Night-Time has more people talking about autism and autistic experiences than all the autism scholarship ever published. I know some autistic advocates have used the play to rally against the lead role going to a "neurotypical" actor. I'm not that passionate about the actor cast in the role, since I thought the book was only okay.

As readers of this blog know, I'd rather be a good creative writer if I had to choose between general audience creative and academic writing. And if that means I also don't teach full-time at a university again, that's life.