Neurodiversity, One Year On · 2005-07-05 22:06

It’s been a little over a year now since I launched Neurodiversity.com. The site started as a way to share with the world an ever-growing database of links, and has evolved into an all-consuming journey into the world of disability rights.

For this first entry, I’d like to offer a history of the year’s events.

These include:

Getting the site off the ground, thanks in very large part to my husband David Seidel, who took care of a myriad of technical details and has provided invaluable moral support, and practical and creative input. The inaugural edition of the site included over two hundred pages and an interactive game, Unmasking the Face: An Interactive Exercise in the Recognition of Emotions from Facial Expressions, based on the work of Paul Ekman.

Documenting and reporting on the civil rights lawsuit, Gayle A. Fitzpatrick and Charles Rankowski v. Town of Falmouth. Case documentation includes transcripts of the entire three days’ testimony in the case; witness affidavits; amicus curiae briefs; court decisions and appellate briefs. I also wrote several essays commenting on the ongoing proceedings, as well as letters to the editor about the case.

Writing the essay, The Autistic Distinction, which is dedicated to Jan Rankowski and his family, and has now been viewed by over 3,800 visitors to the site.

Signing and helping to publicize Our Names Are Autism, Too, a petition protesting the use of pity, exaggeration and deception in efforts to raise public awareness about autism.

In October, I prepared The Petition to Defend the Dignity of Autistic Citizens, in order to call attention to the human consequences of using sensationalistic language to describe autism, and to protest a particularly egregious example of such language. Since its inception, the petition has been signed by almost seven hundred people from around the world. If you check out the long list of signatures, you may find a familiar name, or even a friend or two there.

I prepared a lengthy letter to members of the Congressional Autism Caucus expressing my concerns about the direction of autism research and the manner in which “autism awareness campaigns” are conducted.

Neurodiversity.com was mentioned in Amy Harmon’s December 20 New York Times article, How About Not ‘Curing’ Us, Some Autistics Are Pleading, which had a salutory effect on the hit count for the next few weeks. Responses to the article varied from relief by many autistic-spectrum adults who were gratified to finally see their concerns articulated in the press, to outrage by parents who felt that the article trivialized their family member’s difficulties. One of the most vocal members of the latter group is Lenny Schafer, editor of the Schafer Autism Report. After he published a few particularly militant editorials on the subject, I was moved to respond; the result is Lenny Schafer’s Inquisition.

In January, I availed myself of the resources of the University of Massachusetts, Amherst, to launch The Library of the History of Autism Research, Behaviorism and Psychiatry. To date, about forty articles have been added to the library, and many more are waiting in a nice, big, overwhelming pile next to the keyboard. Highlights include Leo Kanner’s original 1943 article, Autistic Disturbances of Affective Contact, and his 1971 follow-up study of his original subjects; articles by Lauretta Bender, who experimented with the use of massive doses of LSD on autistic children; reports from the early days of behaviorism, including material by C.B. Ferster, Montrose Wolf and Todd Risley, and Ivar Lovaas, and studies from George Rekers’ and Ivar Lovaas’ Feminine Boy Project at UCLA.

My experience with The Petition to Defend the Dignity of Autistic Citizens inspired me to dive anew into the often-hyperbolic literature surrounding the controversy over autism and vaccines. Since I am the daughter of a polio survivor, you can imagine why I might appreciate the long-term effects of infectious disease, and why I might object to the casual use of the word “epidemic” to describe my family members’ developmental pattern and challenges. A U.C. Davis M.I.N.D. Institute press release inspired me to write a letter, The Autism Epidemic and Real Epidemics. In his reply, M.I.N.D.‘s Executive Director, Dr. Robert Hendren, affirmed my basic thesis, i.e., that the word “epidemic” is an inappropriate term to use in the M.I.N.D. Institute’s publicity efforts. Many thanks to Dr. Hendren for putting that in writing!

David Kirby’s book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic, was published in the Spring of 2005, adding fuel to the fire of growing parental anxiety over vaccinations — an anxiety that I do not share. Its publication has also been accompanied by a wave of aggressive proselytizing by proponents of the theory that most instances of autism are a consequence of poisoning — a theory that I do not find convincing. After finding a page on my site linked from a post to the Evidence of Harm discussion list, I paid a visit and was more than a little alarmed at what I witnessed. I expressed my concerns about these matters in an open letter to Mr. Kirby, Evidence of Venom, now widely cited in commentaries about the controversy. To date, Mr. Kirby has not responded to the letter.

Subsequent to writing Evidence of Venom, I have also written numerous other letters on the subject of autism and vaccines, including to Salon.com, The New York Times Book Review, The New York Times, the Boston Globe, and the Des Moines Register.

Until now, I’ve made changes to the site without offering any kind of formal notice to my regular visitors. As a long-time HTML’er who likes to pull together a good old handcrafted web page, I’ve been a little slow to jump on the bloggers’ bandwagon. But it’s time to take advantage of the wonders of newsfeeds to keep my readers informed. I’ll be announcing changes to the text on the main page (newly revised today, July 5), link pages (updated today), new subject categories, new letters and essays, and whatever other inspiration happens to strike.

I welcome you to visit Neurodiversity.com and this blog frequently, for advocacy writing and other original content, and for an illuminating browse through the incredible variety of online resources on autism, disability and related subjects that are comprehensively indexed on the link pages.

Kathleen Seidel
“neurodiversity.com”:http://www.neurodiversity.com

Comments


  1. Okay, I just bookmarked your blog, don’t want to miss any important developments, and I love your writing. — Clay    2005-07-15 12:37    #

  2. I just wanted to thank you for the Neurodiversity.com site- since discovering it shortly after my daughter’s diagnosis of autism, the site has been a major factor in turning me from a determined “curebie” into a parent who accepts my daughter for what she is- a amazing, beautiful, unique autistic. Your site has made a huge difference in my life. I’ll definitely be a regular visitor to this weblog, too. — Lili    2005-07-15 15:32    #

  3. Hey Kathleen

    Welcome to the blogosphere, which is a varied lot. There are some serious thinkers and a whole lot of also thunks. So it’s good to see that the standard’s about to rise.

    I’ll bookmark this site! — Alyric    2005-07-16 03:27    #

  4. Great to see Neurodiversity branch into blogging! From one old-skool HTML’er to another: you should find Textpatterns templates very easy to alter as you see fit. — Kev    2005-07-16 18:00    #

  5. Kathleen,

    Just took the time to read the blog and I love it.Your tribute to Patty Clark inspires us all, as Patty did. – Gayle — Gayle    2005-07-25 22:54    #