Tuesday, October 5, 2010

Autism Blogs and Trainwrecks

I continue to love on Rachel Cohen-Rottenberg's blog. Her latest on "coming out", and the comment thread that that follows, is interesting.

I used to read the blogosphere for self-interested self-discovery-type information about autism, in order to find language to articulate my experience as I relate it to family, friends and professionals.

My friend said that she doesn't read anymore about autism because the bottom line is that they don't really know anything. I've likewise lost interest in articles about autism and scientific "progress" on the main, because of this. I don't need to repeatedly read inaccurate descriptions of how autistics have problems with empathy, lack emotion, and don't have theory of mind.

I now read the autism blogs for self-interested sociological intrigue, at a special interest level. That is, autistic people who write about their experience and their struggles with the wider "autism community" (read: people "affected" by an autistic person and continue to use the sledgehammer against autistic people for not representing the tragedy of autism as they see it)...

As I think I've written about before, I'm interested in the sociological development of autism as Identity. In the politics of enacting an identity and how that is politically significant.

In how the power politics of the label play out, in who has the "right" to speak, and how they speak as it relates to wider power politics in medicine, disability movements, and popular culture. As such, I peruse twitter as a representation in real-time, a kind of CB radio of how people are thinking about autism. I read with intrigue the ugly, messy personal politics, that grey area rife with black and white thinking and mud-slinging self-righteousness in pursuit of a Truth which doesn't exist.

My experience with the medico-parental discourse is ALL second-hand, because engaging directly with it is far too anxiety-provoking for me. I read about others' struggles with those people. I feel somewhat guilty for not engaging, for why I'd rather blog about why I don't attend protests [than attend protests] or engage with any but the most open and interested parents. I don't write about my rage at medication or ABA or "Autism S(qu)eaks" or misconceptions, for the most part, because I'm not yet prepared to be attacked for it.

So, I continue mainly to consume first-person accounts of people thinking about autism, and blog about my own navel-gazing and pragmatic difficulties in the world. That said, I want to support the writers of blogs and I have started trying to comment on other blogs, and this has earned me a bit more traffic, which then expands my desire to write more politically, more openly, and more assertively about things, instead of whining about sensory overload and such.

If you are autistic and write a blog about autism, post it in the comments. I follow a lot (more than blogroll suggests) so I'm not looking for particular recommendations of other blogs, but if you personally write online I'd like to support it with readership and discussion.

7 comments:

born2bme said...

I have found first-person accounts more helpful to me than professional speculations. I have had many "Aha" and "Yes, that's me" moments when reading personal accounts. This has helped me to understand and accept my history and myself. It has been very liberating. Thank you, Karen, for blogging.

Ben said...

i, too, love on rachel's blog .
i also feel a bit like i'm standing back from much of the politics surrounding 'my condition'. maybe this isa version of my serial special interests, where i gather information until i feel like i understand the subject better, and possibly feel confortable speaking about it and maybe being challenged on it.

Liz Ditz said...

Count me as a neurotypical person about Rachel age who is a big fan of her work.

Topic shift:

I spent some time on the phone with Steve Silberman this afternoon, talking about an interview he will be doing next week with Rudy Simone.

Steve asked if I could do two things:

1. Publicise the interview
2. Encourage people, especially people with autism, to submit questions of Ms. Simone.


To refresh your memory, Steve is the freelance writer who wrote the Wired Magazine interview with Ari Ne'eman

Links:
Exclusive: First Autistic Presidential Appointee Speaks Out

http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/all/1

No More Pity: The First Openly Autistic White House Appointee Speaks Out

http://blogs.plos.org/neurotribes/2010/10/06/no-more-pity-the-first-openly-autistic-white-house-appointee-speaks-out/

Starting next week, Steve will be interviewing writer and jazz singer Rudy Simone, who has just published Aspergirls

http://www.help4aspergers.com/pb/wp_c412f5cb/wp_c412f5cb.html

With Shana Nichols and Liane Holliday Willey, Rudy Simone organized the "Exhaling Beauty" event in San Francisco on September 18, 2010. (Another event is planned for Spring 2011.)

http://www.celebratefemaleasd.com/index.html

You can also read the interview with Autism Women's Network interview with Liane Holliday Willey and Rudy Simone at

http://transcribery.wordpress.com/2010/08/07/exhaling-beauty/




Here's how it will work:

Steve will publish a blog post Wednesday October 27 2010 at

http://blogs.plos.org/neurotribes/

introducing Rudy Simone, describing the interview process, and giving a link to the interview


The actual interview will be continue for two weeks (until November 11 2010) and will be published at a public area of The Well:

http://www.well.com/conf/inkwell.vue/

You can get questions to Steve at his twitter account:

http://twitter.com/stevesilberman/

or via email

steve@stevesilberman.com

I'm looking forward to the interview! It will be better with questions from you.

sparrowdoug said...

I think,
first hand accounts place the speaker, their views and ways of being centre-most while second and third person accounts greatly increase the vagaries. I find first person accounts far more fruitful.
I'm new to reading autistic spectrum blogs having only started a few days ago, it is renewing my optimism with folk out here providing tips :).
political years pass too quickly for me to really observe them and I've not yet learned enough (early 30's) to follow the multi-decade trends.

I aspire to be in a silent space, still and relaxed

thankyou for blogging :)

Erica said...

I too find it overwhelming to read so many accounts of Autism or ASD from NT's. I agree with born2bme, who's blog I visit regularly, I prefer to read personal accounts of people with an ASD or have children on the spectrum.
I have two blogs. My first one is about my 12 year old son who has SPD and ADHD. His neuropsychologist just diagnosed him with Bipolar NOS. Which, in my opinion, is a wrong diagnosis. You can find that blog here:

http://understandingaustin.blogspot.com

I was recently diagnosed with Asperger's syndrome. At age 40 I am now understanding myself. You can find my new personal blog here:
http://neurologicallyimpaired.blogspot.com

Natalie said...

Perhaps I'm a bit too much of an information junkie, but I really want to see research funds allocated to studying the relationship between NLD and Asperger's. I also want to see more studies into the presentation of Asperger's and Autism in girls and women. I find that it's just the same information, riddled with assumptions, opinions and inaccuracy, and not enough facts. Not even scientists can agree. It is nice to see first hand accounts, but due to the fact that we are all so different, some facts would be helpful too. First hand accounts are nice, though, as many people will find some comfort in seeing "they are not alone".

Wave Mom said...

I like your blogs and hope you begin writing them again. I my daughter has Aspergers and I can relate alot to what you write.

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