Skip to main content

Autism Awareness... A Month of Disputes

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 Society of Minnesota, which in turn is a regional chapter of the Autism Society of America. I've had supporters of other groups complain to me about ASA, but I have found ASA is generally less "single-purpose" than other organizations. I'm only loosely involved in ASA, mainly presenting at some events. My theory is that you should speak where people might hear.

But, I'm not passionate about ASA. By nature, I don't care for large groups -- even large charities. Any large organization starts to focus on maintaining its own funding and growth. Service becomes secondary to the group's existence.

It's a shame parents, providers, educators, and researchers waste energy yelling at each other and questioning each other's motives. I don't care for most autism-related organizations, mainly because I think they play on the fear and misunderstanding of science within society. But, I also know that the parents joining these groups are not evil. I don't question their motives -- they are searching for answers and explanations.

This is a long month. April will be spent with factions calling each other names and making accusations about being "bought off" by special interest. The best approach to "Autism Awareness Month" might be to ignoring it.

Comments

  1. I enjoy hearing from someone with ASD and hearing their opinions about ASA, Autism Speaks, etc.

    Like you I do not understand how people can fight so hard against each other.

    Thank you for sharing.

    ReplyDelete
  2. It's easier to be angry and blame people for things in our lives. Sure, it is really tough at times, but the anger I hear and read is so intense that it cannot be healthy.

    My attempts to participate in groups is best described as awkward.

    ReplyDelete

Post a Comment

Comments violating the policies of this blog will not be approved for posting. Language and content should be appropriate for all readers and maintain a polite tone. Thank you.

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 …