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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, November 03, 2006

 

What Preys on Personhoods

The press incite panic
Pejorative parlance professes improper pedigrees
and peadiatric pandemic of percentages and preseverations
propogates parental paralysis of proper analysis
and instead posits piteous epidemics
that prey on personhoods.


This from The Cornell Daily Sun (thanks, Steve)on the press and science:

Every few years, a press release touts a breakthrough in autism research or treatment. The list of these discredited causes or treatments of autism includes secretin infusion, the MMR vaccine, chelation therapy and facilitated communication. Each of them has given parents false hope, or worse, false guilt. The researchers behind these press releases suffer from the most ethical of motivations: they sincerely believe that their conclusions are sound, they perceive a prejudice of the scientific establishment against these conclusions, and they sense an urgency to communicate their findings to the broadest possible audience of scholars and, more significantly, parents, so as to prevent autism’s ongoing tragedy. This well-motivated urgency often results in circumvention of peer review, the careful process by which scientific findings are vetted and judged worthy of presentation to the broader community. Despite its many faults and delays, peer review remains essential to maintaining public trust in science. Read FULL ARTICLE HERE

Matthew Belmonte is an assistant professor at the Department of Human Development at Cornell University. He can be contacted at mkb4@cornell.edu. Guest Room appears periodically.


Morton Ann Gernsbacher from her article REACHING FOR RELEVANCE:

As we all know, times have changed. Psychological scientists feel the crunch of funding cuts, the burden of congressional accountability, the threat of prioritizing applied over basic research. Therefore, psychological scientists are now reaching for relevance — often, it appears, to the point of gratuity. Nowhere is this more apparent than in recent press releases issued to promote publication of basic scientific research. Consider the following three examples.

Admittedly, I have a dog in this fight – a dog that could well be apparent through all my presidential columns. I am mother to an incredibly wonderful, light-of-my-life, engaging and eccentric autistic son. I am actively involved in several federally funded projects empirically investigating various aspects of autism. I also believe strongly that whenever we, as researchers, write about autistics or Jews or women, we must be cognizant that we are discussing and describing members of our society.

Indeed, I submit that whenever we write for the public, we must be more not less circumspect. We can’t depend on stereotype, a Hollywood movie, or a casual conversation with a colleague to provide us with knowledge of the phenotypes that NIH cares about. Instead, we must research the implication of our findings with the same rigor that we research our basic phenomena. Relevance is a prized commodity these days, but let’s not buy relevance at the cost of scientific inaccuracy and societal stigma.


Here is some of the effects of the stereotyping and stigma that arises from so-called "FACT SHEETS" released by some parents, research news released by press, and unproven and even non peer-reviewed studies by some scientists:


Being an Unperson


And then there is a new blog by a mother, Autism Voice. Ms. Sinclair says this:

In either case, society is telling us how we should feel- happy or unhappy. But in reality, no one else can dictate your feelings, unless you allow it. You truly decide how you feel from moment to moment. You decide if you're going to buy someone else's idea about how you should feel. And yes, you can decide to be happy or unhappy, despite what everyone has told you. You can decide to be happy now, without waiting till your child is recovered. I'm not talking about denial, where you're pushing down feelings and pretending they're not there. I'm actually talking about making the decision to be truly happy.

That doesn't mean that you give up on hoping and trying for more. If you can hope and work for your child's best outcome without making your happiness dependent upon it, and if you fully accept your child as he is now, even with his autism, then your child will feel that acceptance and positive expectation, and will respond by believing in himself.


I don't need to write today. It's been said. When will it sink in?

9 Comments:

Blogger Natalia said...

hey, facilitated communication can be false or it can be someone's true lifeline to communication. we both know at least one person who has had FC done both right and wrong and lived to tell the difference!
i was so disturbed by the inclusion of FC in the first quote that i can't concentrate on the rest of the post.

sorry for the tangent, but i think it needs to be mentioned becos this is important in a lot of lives.

10:03 AM  
Blogger Estee Klar-Wolfond said...

Then you should read the rest of the post. FC has been discredited and yes, abused. But it is so important to a lot of autistic people...it also leads to more independence in communication. Be aware, but also don't throw the baby out with the bathwater.

10:12 AM  
Anonymous Henry said...

artful alliteration Estee. Powerful piece.

12:08 PM  
Anonymous rocobley said...

Estee - totally irrelevant to this discussion but the 'resources' section on the TAAP page doesn't seem to be working, and when I briefly went there a while back there was a bunch of peer-reviewed papers there apparently which I'd like to read. They haven't been removed for copyright reasons or something have they?

7:05 AM  
Blogger Julibean said...

What a powerful video, who is the person who made it and is there anything else out there by the same author?

9:54 PM  
Anonymous Ms Clark said...

Estee, I loved "parntal paralysis of proper analysis." Wish I'd said that. :-)

4:00 AM  
Blogger Estee Klar-Wolfond said...

rocobley --

I will investigate what's going on with TAAP website. I'm not sure yet. We will be rennovating it this month, but no information has been deleted.

Julibean --

It's Amanda Baggs of Ballastexistenz blog. Go to You Tube and click on Being an Unperson, and you should see her other ones there as well.

8:33 AM  
Anonymous Anonymous said...

Enjoyed your poetic alliteration.

Scorpio

9:54 AM  
Blogger Natalia said...

Estée, i did go back and read the rest... after i'd got that off my chest. (my rhyme not worthy of your alliteration but there you have it).

2:14 PM  

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