Whose Planet Is It Anyway?

Monday, May 31, 2010


When I wrote a post last month about pruning my rosebushes, Clay commented that he'd like to see another photo when they came into bloom. All the cold wet weather in the northeastern United States this year has been good for the plants, whatever else we might have to say about it. The roses are blooming quite nicely:


I've been reflecting on how much our society's understanding of neurodiversity, like my rose garden, has grown over the past five years. At the end of 2004, shortly before I started blogging, typing "neurodiversity" into a search engine yielded very few results. Finding a new self-advocate website or a parent site that wasn't doom and gloom was like discovering an oasis in a vast scorching desert of intolerance.

At that time Kathleen Seidel had just recently set up neurodiversity.com and was busily working on her collection of links, but there weren't many positive sites for her to add. Amy and Gareth Nelson had a forum for parents on Aspies for Freedom, which was also a new site, and were trying to get a constructive dialogue started between autistic rights activists and parents. One of the parents who joined that forum in early 2005 was Kevin Leitch, the Autism Hub's founder. Dave Seidel later took over as administrator of the Hub, with his helpful sidekick HJ, contributing a huge amount of time and energy for which they deserve recognition.

The Hub took a lot of criticism over the years for having an angry tone, frequent arguments that were often less than constructive, too much emphasis on anti-quackery blogging at the expense of other important issues, and lack of effective action to prevent bullying by various individuals and factions. All of these things did indeed happen, and some other annoying stuff besides, as to which I was not blameless and don't claim to be.

But the Hub was also a wildly successful online diversity seminar, quite possibly one of the most successful in history. Its participants and readers came away with their assumptions challenged and their understanding of others' perspectives broadened. After encountering the Hub, many readers became inspired to start their own pro-neurodiversity websites and to work toward improving conditions for autistic people in their communities.

The mainstream media started to notice what was going on. At first there were only a few scattered articles suggesting that the neurodiversity movement was an odd little fringe group. The event that really got their attention was the Ransom Notes protest, described in detail here, which was a successful effort in December 2007 by Hub bloggers and others organized by the Autistic Self Advocacy Network to shut down a very nasty billboard advertising campaign that was comparing autistic children to kidnap victims.

Journalists writing about autism politics soon began interviewing neurodiversity proponents on a regular basis, having now recognized that they were dealing with a fast-growing civil rights movement. Politicians took notice when self-advocates gave testimony before legislative committees and agencies, which led to autistics being appointed to policymaking positions with autism commissions and other entities. Local autism societies made more efforts to ensure self-advocate participation in their leadership. Researchers gave more consideration to the ethical concerns and practical needs within the autistic community.

The implosion of the Autism Hub, although it marks the end of an exciting time when the blogs were at the forefront of a major cultural shift, was not a defeat for autistic civil rights or for the concept of neurodiversity. On the contrary, it's now clear that we won the first battle. We made people understand that they were looking at human beings, not at monsters or changelings. We did an effective job of consciousness-raising in the autistic community.

This blog, in particular, has accomplished everything that I set out to do with it five years ago. Now the time has come, as I wrote in early April, to focus on the less dramatic changes that need to be made—the development of effective educational programs and support structures and employment regulations to ensure that every autistic person can be an equal participant in our society.

To everyone mentioned above, and to the many people I haven't mentioned in this post who also took part in laying the groundwork for a better future, I leave you with a bouquet of virtual roses and my deepest gratitude as I post my last entry here. My best wishes to you all.

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  • They are beautiful roses.

    I am sorry this will be your last blog post. Your blog has been excellent for informing a wide array of readers about topics that are important to the autism and disability communities.

    I wish you well. :-)

    By Blogger Kim Wombles, at 2:23 PM  

  • Thank you, abfh, for what was accomplished here.

    By Anonymous Mark Stairwalt, at 2:50 PM  

  • For me, discovering your blog some 5+ years ago, was very much like discovering an oasis. I found your kick-ass attitude of self-advocacy very refreshing, and I know it inspired many others to help you tend that garden called "neurodiversity".

    You can take with you the deep satisfaction of seeing the garden you did so much to help tend bloom, and know that many will benefit from your efforts.

    Thank you, and we'll miss you!

    By Blogger Clay, at 3:33 PM  

  • Ooooh!
    So many blogs I love close or disappear these days, I feel very disapointed, of course I will miss your voice.
    In my two countries (Switzerland and France) there is still so much work to do, Much of the people here still know almost nothing about autism, so maybe this can let us hope we could avoid some of the errors that have be comitted by those who preceed us... but we have to be vigilant, the anti-vaxx have already comes to make some adepts in France and Switzerland, they even seduced some people who could maybe have been good allies, and I read on Larry Arnold's blog that Autism Speaks want to come in France, I will try to make sure they are not welcome.
    If you type "neurodiverité" (french translation of neurodiversity) on google, you don't find many things, and most of what you find is wrong perception of the "neurodiversity movement"... When I type "neurodiversité" on google I find my blog on the second page, I have the impression i am the first french neurodiversity blogger!
    I think I have found some friend who will help me, but there is still a lot of work to do.
    Thank you for your blog.

    By Blogger Ole Ferme l'Oeil, at 5:57 PM  

  • Thank you for your voice and strength over these past few years; I will miss your writing.

    By Blogger Niksmom, at 9:41 AM  

  • Ack! Now who will I have to discuss my ignorance with ??? You have always given me lots to think about, glimpses into possibilities of my son and ways he might see the world as his own person. Thank you for being here and never fearing to engage and point out when you disagreed with what I was thinking and saying. That's what learning is all about.

    If you decide to start up a blog about educational strategies, etc., don't forget to let us all know.

    By Blogger Joeymom, at 11:30 AM  

  • Thank you for being one of those blogs reassuring me as well as challenging me.

    By Blogger Ange, at 1:25 PM  

  • Thank you for the energy and passion you put into this blog, and for your part in helping people look at autism and disabilities differently. You will be missed. Good luck with the next step!

    By Anonymous Anonymous, at 2:07 PM  

  • ): You are closing at the same time that I graduate high school! I know, I am sick of spending so much internet time in order to advocate for neurodiversity. I want to do it in person. Hopefully I can when I go to college. Though I will be working very hard in all my classes, I will definitely spare some time to encourage my fellow autistic people and their families.

    By Blogger Unknown, at 12:07 AM  

  • Thanks for all you have done with this blog..I am sorry that you are leaving. :)

    By Blogger kathleen, at 11:01 AM  

  • I am sorry to. I have always enjoyed reading you.
    Take care.

    By Blogger Casdok, at 1:44 PM  

  • I only just now found this post -- sad to see you're going! I can understand it, though... I was really active in the 2001-2005 wave, and 'retired' once it was clear the community had blossomed enough to not need the disorganized homegrown activist types anymore.

    Hopefully the next crop of spectrum fighters will be able to throttle the JRC & ABA into submission... I'll be out here on the outskirts, tackling one person at a time. :) Enjoy your retirement (or break)!

    By Anonymous it means 'street cat' in UK lingo, at 3:48 AM  

  • Comments on this blog are now permanently closed. I thank you all for the kind wishes, and for the many thoughtful discussions on this blog over the years.

    By Blogger abfh, at 9:12 AM  

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