Tuesday, January 12, 2016

Cure Messages of "Hope"

I understand that holiday fundraising is a tradition. Here's a cute child. You care about children. Send us money.

At the end of every year, I receive dozens of emails from autism advocacy groups. The higher-end email newsletters from Generation Rescue and Autism Speaks offer "hope" for a cure… someday. Other emails promise recovery through "treatments" ranging from fad diets to pressure chambers. Sure, autism is just like recovering from a deep sea dive.

It is almost impossible to judge these organizations and determine which are worth money or time. I don't send money to these groups and I'm not as involved locally as I was when we lived in Minnesota. I'm on a single board and volunteer to speak from time to time. I'm not convinced even the more serious organizations are accomplishing much, beyond "awareness" of autism.

We're aware. Thank you. Now what?

I'm not sure what should be next. I've written before that I'm not opposed to epidemiological surveys, genetic screening, and other basic research. But, that research takes years and won't benefit autistic children and adults today. The range of services needed is as broad as the "types" of autistics you might encounter. Organizations, however, like to focus on children and cures.

If you give money, research the organization. Does the money go to research and supports or to administrative overhead? Does the organization focus too narrowly on "curing" autism instead of supporting autistics today? What would you like to see for the autistic in your life or yourself? Find groups that support what you might need.

Don't send money without knowing something about any group. If you support what you discover, then give. Remember, volunteers are often harder to locate than funding, especially for any events.

Tuesday, January 5, 2016

New Year, New Plans

This fall was a respite of sorts from academia while I concentrated on writing and considered my path ahead. For the last few months, I've been working on a mix of screen and stage projects, while also collaborating on some creative writing projects.

As December ends, I'm returning to both academia and corporate life, which will reduce my creative output significantly for at least 2016. I'll be completing my MFA (master of fine arts), something I started before my doctoral studies. If I complete the program, I'll have an MFA in Film and Digital Technologies, which will complement my interest in screenwriting and "transmedia" theatrical productions. At the same time, I'll be doing some corporate consulting to pay for classes and some home renovation projects.

My consulting work will be as an ADA compliance expert for Web, application, and new media content. This work aligns wonderfully with my doctoral research and my dissertation. Working on projects that help people with special needs will be rewarding. I have done a great deal of speaking and consulting on ADA issues, and educational accommodations, but this new assignment will be particularly challenging because of the nature of my client.

These two parallel paths should let me pursue teaching again by 2017, along with creative writing in all its forms. Ideally, I [finally] will be able to pursue teaching within "Digital Humanities" or "Media Rhetoric" instead of composition. (I love teaching almost anything, but I am not at home within the "college composition" community.) Plus, working on ADA compliance will exercise my Web and development skills, something many colleges will appreciate.

And so, as 2015 comes to a close, I am reminded that plans keep changing for some of us. I have friends, and a wife, who have spent years working for a single employer. I envy that stability. Ideally, 2016 leads to that sort of long-term stability for me in the years ahead.

Even if I end up freelancing and teaching as an adjunct after 2016, at least I should be working in the fields and on the projects I enjoy.

Wednesday, December 2, 2015

Another "life is normal" post

Yes, our lives continue to be "normal" middle-class suburban lives. We sometimes feel that there's too much happening, but then I listen to other couples and friends and realize how rather routine and uncomplicated our daily routines are.

Many of my friends and neighbors are returning to school in their 30s and 40s. The job market, improving slowly, requires more and more educational achievement to advance. For me, this means considering an MFA in Film and Digital Technology to add to my existing MA and PhD. My struggles in the academic job market are not about autism or disability (though there is an element of "you don't conform to our norms"); the academic job market is badly broken.

Our house still needs some work, and there are things I like to change. Again, many of our neighbors who have been in this new development for as long as we have don't have every box unpacked or every room painted. Apparently, it takes more than four years to move into a new house.

I'm writing and editing a lot for myself and clients. Again, that's what all freelance writers do. My work isn't special and my efforts to keep writing and bringing in money aren't unique. That's what writers do.

My wife is preparing for one of her trips back to the headquarters of her employer. Again, welcome to normalcy in the middle class. I don't like it when she is gone and I worry about our little orange tabby cat. He's old and slow and not eating as much as we'd like. Normal issues.

If you want me to write about something, especially a question you might have, you can contact me on Twitter or Facebook.

Most private questions are about relationship, sexuality, employment, and education. In that order, roughly. I used to believe that order reflected odd priorities, but it turns out that the parents, educators, and disabled people emailing me want connections first, followed by good jobs. Education relates to having a stable career.

Let me know what might help visitors. Or what might be interesting to read.

https://twitter.com/autisticme

https://www.facebook.com/autisticme/

Normal is okay.

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.


Hello,

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 @ gc.cuny.edu
Or visit https://survey.gc.cuny.edu/s?s=3797


(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.

Sincerely,
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.