June 28, 2007

Autism Speaks Aint Speakin'

For the last month or so other bloggers and I have been pointing out the serious ethical problems of Autism Speaks. Last week, one of the board members, Jon Shestack, wrote a personal note to those like me who have been critical of Autism Speaks, asking for us to use restraint in our criticism and to give AS the time to answer our charges on the merits. He also called on the board of Autism Speaks to do some soul searching to see if it was time for them to change direction.

Well more than a week has gone by since then, Jon Shestack has been arguing with some in the ND crowd, but no one at AS seems to be offering the "defense on the merits" that we are supposed to be waiting for.

So exactly how long are we supposed to wait patiently?


Dadof6Autistickids said...

Maybe they are on vacation. Maybe they are deaf and blind to what is going on around them. Maybe they have soooooo much money they don't give a rip about us 'little' people.

Maybe they just don't care.

Anonymous said...

Stranger than Fiction

Fantasy Author Offers his Autism Story

It has been said that all geniuses must deal with the fate of being misunderstood. Perhaps that is also the fate of those dealing with autism spectrum disorders. Surely Caiseal Mór, bestselling author of The Wanderers Series, The Watchers Series and The Wellspring Trilogy would agree. Diagnosed with an autism spectrum disorder around the age of 9, Mór developed a strategy for dealing with the world by assuming different personas—the Mahji, Charles P. Puddlejumper, Marco Polo and Chameleon Feeble—all of whom appear in his autobiography, A Blessing and a Curse: Autism and Me (April 2007; Jessica Kingsley Publishers; $18.95; 978-1-84310-573-2).

“My symptoms aren’t the problem,” Mór writes on his website, “the perception you have of my symptoms is the problem.” His early preoccupation with pretending to be different characters allowed him to deal with the “problem” of perception which manifested itself in the form of ignorance and abuse, but became an invaluable contribution to his fantasy writing. Mór’s captivating autobiography poignantly demonstrates the struggles those living with autism must endure but offers the reader hope that those on the autism spectrum can ultimately accept themselves and live creative, productive and satisfying lives. Though this book is not fiction, A Blessing and a Curse blurs the line between personal experience and fantasy.

Mór’s autobiography is as compelling as any novel and a must read for those dealing with feelings of isolation or disconnect as a result of autism. The depictions of his various personas offer insight into the minds of those dealing with autism and also make clear the tremendous creative potential of those on the spectrum. The progress that has been made in understanding autism since the time of Mór’s childhood during the 1970s is also evident. Remembering the abuses and neglect of his youth, Mór paints a picture that is, in the words of Donna Williams in the book’s foreword, “as beautiful and magical as it is shocking.”

Caiseal Mór is the well-known author of two non-fiction books, twelve fantasy novels, including The Wellspring and Watchers Trilogies, and the composer of six accompanying musical CDs. He lives in Australia with his wife.

Further information about this book may be found on the JKP website: http://www.jkp.com/catalogue/book.php/isbn/9781843104995

Jessica Kingsley Publishers, 116 Pentonville Road, London, N1 9JB, UK
Tel: (+44) 020 7833 2307 Fax: (+44) 020 7837 2917 email: post@jkp.com

In the US: Jessica Kingsley Publishers, Inc. 400 Market Street, Suite 400, Philadelphia, PA 19106, USA

Tel: (Toll free ordering) 866-416-1078 Tel: (main office) 215-922-1161 Fax: 215-922-1474 email: orders@jkp.com

Jessica Kingsley Publishers - 20 years of independent publishing 1987-2007
Independent Publisher of the Year
Academic & Professional Publisher of the Year

Anonymous said...

I think the question should be....who would believe anything this man or this organization has to say?

jon s said...

I appreciate your effort to bring the thoughts of some in the community to the attention of AS in a calm and methodical way, I really do.

But I think that your impatience with me is not reasonable. I have three kids, they are off from school, I have a job, I am a volunteer. I hate to type and only do it with two fingers on one hand...so cut me a break. I wasn't yanking your chain when I said I would try and respond to your questions.

Also, know that everyone at AS is working like crazy. Sxty walks planned, four pieces of major legislation being workrd on, in one instance a very inhteresting test case on insurance waivers. There is a committee ortganizing pro bono legal experts to mount legal challenges in important cases around the country that could help set better legal precedents for people with autism. There is on going research funding and managing those portfolios. All of the people thatyou and some of the folks who write on your blog seem so annoyed with are not lazy slackers. We may not be doing everything you want, but we are busy doing a lot. . And we are happy to try and enroll as many people as we can with dialogue and information.

I understand that it's easy to hate on the "establishment", but please understand, we are as surprised as anyone to suddenly be considered the establishment.We are parents and grandparents just like you. Give me somee time and I'll try and get you the inforamtion you need.best, js

one more thing. anonymous posting sucks.

Ginger said...

I agree that anon posting sucks. But I am trying to be fair and give everyone a voice. I try to remove as few posts as possible but I may change that sometime in the future.

And I have not lost patience with you. I am still waiting patiently to hear back from you. I get that you are busy. You can take more time, but AS has still said nothing. Not even a "We are working on a response and will get back to you".

About me... I am a republican. I am a Christian. I am all about the establishment. I am a Navy brat and are one of the few people that you will meet who actually appreciates the wisdom of submitting to authority. As long as that authority is earnest and honest.

Authority can screw up repeatedly and as long as they take the heat and clean up their mess, I am still right there with them.

This is not about challenging authority, it is about accountability.

If one steps up and makes a claim, people will believe and depend them keeping their word. You have to live up to your word or issue a mia culpa and get back on track.

Those who won't have no place in leadership of any kind.

You actually did that in your letter. Which is why I am still listening.

AS is not being accused of laziness, on the contrary. They are so ambitious they are trampling on others. AS needs to stop for a minute, take a look around and see what is really going on, and adjust their direction.

Those in leadership there are just adapting the business/entertainment industry models of success and those models don't work in the autism community.

To busy to answer questions? Questions that were sent months and years ago? Didn't I read that you had a PR firm on retainer? Isn't that Alison Singer's six figure income job?

I like you John, as I have said, I think that you are earnest. But you have to understand, good intentions do not help us.

To be crass, it is put up or shut up time. No more lip service or dropping hints that AS is "open" to biomed research. Enough is enough.

I know this is harsh, but how long should reasonable people wait around while their urgent needs are being ignored?

It will take two weeks for people to get their letters in, that give AS plenty of heads up time. AS can let me know what they think is a reasonable response time would be.

If AS deals in good faith, then people will be patient and reasonable, if they don't then people shouldn't be patient and reasonable.

I am sorry that this is contentious. I am not a fan of contentious. But this stuff really matters.

AS says it wants to raise hundreds of millions a year. If they can't be accountable for the 10s of millions, they should not be trusted with the hundreds.

Anonymous said...

Jon S. claims that "we are parents and grandparents just like you." Really? I don't think Tepper-Singer is like any of us. Tell A.S. they'd gain a lot more respect if they fired that one!!!

Anonymous said...

And one of Jon's excuses for not answering sooner was that he was busy (as if none of us are!) and he can only type with two fingers. Might I suggest the Type To Learn typing program. It works very well for my autistic child.

Moi ;) said...

Just to throw a fly in the ointment - those of us who are Democrats, not particularly religious, and eternally question authority also would like to know what's going on with the money AS has been raising. ;)

I have been saying since Day 1 that AS seemed "fishy." They have been walking on people since they jumped into the ring a month before National Autism Month, hence taking needed funds away from the smaller organizations.

No one likes a bully.