Skip to main content

Autism: Researchers, Scientists and Science

Researchers and scientists are human. This means that despite their best efforts, they are shaped by their own biases and experiences. It also means they exist in a world of politics -- from university politics to the politics of professional organizations. And make no mistake about it, government and non-profit organizations make research funding decisions based on politics, as well.

Most scientists and researchers I know were drawn to research for personal reasons. For example, many cancer researchers are motivated because they lost friends or relatives to cancer. The goal is still altruistic, in my opinion, but there is something that nudges each of us interested in research to pursue specific questions.

I do want to clarify that not all researchers are scientists. Researchers in the humanities might borrow terms and techniques from the "hard sciences," but social science and general humanities research is often overtly political. This research is sometimes called "activist scholarship" and the "activist-researcher" declares his or her position and goals.

I am not a scientist; I am a pedagogical researcher. That means I research ways to improve education, from minor changes to new instructional techniques. My emphasis is on language instruction and students with special needs. There is clearly a personal connection, since I have been "disabled" since birth. I don't pretend my research isn't motivated by my experiences and my desire to change language education in our schools. Honestly, I make no claim to "science" -- but I do admit I might be better suited to the hard sciences at times.

I do my best to adhere to research standards, drawing from science. This means one develops a theory, tests it, publishes, and waits for others to retest the theory. I like quantitative data, especially data that are replicable by another researcher.
Scientific method, though a human "creation," is meant to help reduce the effects of personal biases and emotions during research. I have a great deal of "faith" (trust?) in scientific process, while I don't always have faith in how governments, non-profits, and corporations fund research.

Autism research is about as political as research can get. Sadly, no matter how idealistic and pure of heart a scientist or researcher, the funding and promotion of research is controlled by groups with agendas.

If you can't get funding as a researcher, obviously you move to other research topics. It doesn't matter if you're in the hard sciences or humanities, the reality is that you must get funding and you must publish research to be employed. In academia, you have to publish one or two papers a year, appear at conferences, et cetera, or you won't earn tenure. No tenure, no job security.

We should be asking which groups are funding research, supporting journals, and why. It isn't that I don't trust my colleagues -- I do -- but I do worry about a handful of powerful (and apparently obsessed) groups controlling the purse strings directly and indirectly. Something to consider, even if one tries to adhere to the ideal. Someone writes the grant checks or persuades politicians to support specific research priorities.

Comments

Popular posts from this blog

Autism, Asperger's, and IQ

"Aren't people with Asperger's more likely to be geniuses? Isn't genius related to autism?"

A university student asked this in a course I am teaching. The class discussion was covering neurological differences, free will, and the nature versus nurture debate. The textbook for the course includes sidebars on the brain and behavior throughout chapters on ethics and morality. This student was asking a question reflecting media portrayals of autism spectrum disorders, social skills difficulties, and genius.

I did not address this question from a personal perspective in class, but I have when speaking to groups of parents, educators, and caregivers. Some of the reasons these questions arise, as mentioned above, are media portrayals and news coverage of autism. Examples include:
Television shows with gifted characters either identified with or assumed to have autistic traits: Alphas, Big Bang Theory, Bones, Rizzoli and Isles, Touch, and others. Some would include She…

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.…

Life Updates: The MFA Sprint

Life is okay, if more than a little hectic at the end of this first month.

With one month down, I'm 11 months away from my MFA in Film and Digital Technology. Though things might happen and things do go wrong, so far I'm on schedule and things are going well —— though I'm exhausted and working harder than I did for any other degree. Because the MFA requires projects every week, this isn't as easy to schedule as writing. Even researching a paper can be done from the comfort of home, at any hour.

You cannot make movies by yourself, at any time of day. It doesn't work that way. Filming takes time, and often requires a team of people. It's not comparable to working alone on a degree in writing or rhetoric.

The team-based nature of film is exhausting for me, but I enjoy the results. I also like the practical nature of the skills being taught. You either learn how to adjust ISO, f/Stop, shutter speed, and other variables or you don't. You can have theories …