Autism Info Vacuum?
Is there a “vacuum” of information on autism, as Karin Klein writes in today’s Opinion LA?
Klein suggests that this “information vacuum” is one reason why, when it comes to autism, “people tend to rush in with theories, wild or otherwise” about the causes of autism (such as these), and especially theories about the supposed “autism epidemic” (which, Klein posits, might be in part the result of “purposeful diagnosis” of autism in children, as autism has become a “ticket to social services”). Or is it rather that there’s too much about autism? Is an overload of information constantly being reported, so that parents have to comb through to find what is useful and accurate?
Sometimes I feel that, when it comes to autism these days, it’s a climate of feast and famine—of knowing more than has ever been known about autism, and still not feeling as if one knows anything.
Tags: asd, asperger, autism, Diagnosis, information overload, knowledge, pdd-nos, social services, vacuumRelated Stories
POSTED IN: Cause, Diagnosis, Epidemic, Philosophy, Vaccines
11 opinions for Autism Info Vacuum?
xtiluv
Apr 29, 2008 at 7:20 pm
Feast and Famine…a perfect analogy. It can be as if we are at a table filled with beautiful dishes, but some are toxic and we are given conflicting information on what to eat.
So many therapy choices, so many success stories, so little concrete evidence about what will work in our individual situations. And so much at stake…our children and our financial well-being.
I am always afraid of making the wrong choices from my table of options.
jonathan
Apr 29, 2008 at 7:25 pm
call me a cynic, but i don’t think we really know anything that counts for anything, particularly something that will help ameliorate autism if not find a cure (yes that dirty four letter word). I wish we really did have an understanding of the etiology and legitimate ways to treat autism, but money spent disproving thimerosal/vaccines ad nauseum could be going to other avenues.
Bonnie Sayers
Apr 29, 2008 at 7:44 pm
I have used feast or famine to express how complex our lives are when depending on one paycheck to survive and that gets lost in the mail. Soon the state of CA is going direct deposit, should be nex month as I filled all paperwork last month.
I live in Los Angeles but subscribe to the Daily News. The other day they had the article from Wall street journal
http://online.wsj.com/article/love_and_money.html
I have a google and yahoo alert set for autism and my name. You find all sorts of articles, how do you find these? Maybe I need to add some terms for my alerts.
I heard today that Extreme Makeover Home Edition is looking for a Southern CA family for a show. The key here is that it must be a TACA family and they own their own home (not rent).
Someone unsubscribed from my site and sent a note saying that I only talked about my children and she wanted help with hers. I have posted on my forum the search terms on my site - here are a few:
photo of autism victim
example of autism victim
food for autistic children
autism and clothes
restraints
sample drills
walking harness for special needs
screeching and autism
fleeting eye contact
holding bowel movements
sample IEP on autism
autism charts and graphsreciprocal conversation
My site is non paying, all volunteer work and people want me to do their research for school and use my articles for their newsletters.
Thankfully there is amazon affiliates and my little ebook, otherwise it would be too overwhelming. As it is I do not write about current issues and stick to personal stuff I know about. Maybe I need to expand.
I go agree about information overload. Which reminds me I never did go to stanley greenspan today for lectures since it was testing day.
Kristina Chew, PhD
Apr 29, 2008 at 8:59 pm
@jonathan, you wrote “money spent disproving thimerosal/vaccines ad nauseum could be going to other avenues”–
ditto a couple times over.
Marla
Apr 29, 2008 at 10:31 pm
I agree with your last line. I feel that way a lot.
Kristina Chew, PhD
Apr 29, 2008 at 10:43 pm
Right now am feeling that (1) adolescence for a boy with Charlie’s diagnosis and (2) figuring out housing—-a long long term worry, but it’s been on my mind—-are two great gulfs that I know barely anything about. Jumping right in.
Melody
Apr 29, 2008 at 11:35 pm
Also there are a lot of people (unfortunately, they may be ones working in education and administration) who think they know a lot about autism but really don’t understand. They can regurgitate stuff from research, research that has at its foundations often inaccurate assumptions about autistic people.
Autism as a ticket to social services? If that was implying what I think it’s implying, it’s way off base. It’s been like pulling teeth to get my IEP right and to get them to do the darn testing in the first place (I graduate in four weeks compared to some other people being tested first who graduate in four years). And it’s quite obvious in classroom and other situations that I have significant difficulty in accessing classroom material, and I already have a diagnosis and IEP on record (just that the IEP hasn’t really addressed any of my issues and I haven’t been able to verbalize it until recently).
Phil Schwarz
Apr 29, 2008 at 11:54 pm
@Jonathan: I wholeheartedly agree with you about resources and energy mis-spent on the mercury-and-vaccines nonsense.
@xtiluv: There’s a story about Heaven and Hell that I think is a propos –
The story says that Hell is a giant banquet table full of delicious food, but everybody’s arms are locked in a fully-extended position, unable to bend at the elbow, so none can feed themselves. There is much wailing and gnashing of teeth.
The story goes on to say that Heaven is a giant banquet table full of delicious food, and everybody’s arms are locked in a fully-extended position, just like in Hell — only in Heaven, they have learned to feed *each other*.
I think I see too much Hell and not enough Heaven in the autism community.
stopautismquackery
Apr 30, 2008 at 1:59 am
“I heard today that Extreme Makeover Home Edition is looking for a Southern CA family for a show. The key here is that it must be a TACA family and they own their own home (not rent).”
Dear Ty at Xtreme Home Makeover:
Live in So Cal
Own my house
Just starting my own renovation project
Doing it myself
But, I refuse to have anything to do with TACA
TalkAboutCondemningAutistics
Kristina Chew, PhD
Apr 30, 2008 at 8:11 am
think they’ll get an infrared sauna and a clean room?
Emily
Apr 30, 2008 at 4:40 pm
Bleh.
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