Re: JB's Hey CDC on Autism Speaks website

October 31, 2006

YEAH!!!!

>

> http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

>

October 31, 2006

YEAH!!!!

>

> http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

>

October 31, 2006

WOW! This on Autism Speaks website.

" Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't

know that. I do know that every time I hear the word " flu vaccine " I

get sick to my stomach. How come CDC or AAP didn't make a point of

telling me flu vaccine in 2003 still contained mercury? It would have

impacted our decision "

This encourages me.

>

> http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

>

October 31, 2006

WOW! This on Autism Speaks website.

" Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't

know that. I do know that every time I hear the word " flu vaccine " I

get sick to my stomach. How come CDC or AAP didn't make a point of

telling me flu vaccine in 2003 still contained mercury? It would have

impacted our decision "

This encourages me.

>

> http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

>

October 31, 2006

Autism Speaks asked my permission to post.

They are in a great position to represent ALL our kids if they

choose to.

This is one of many positive steps I believe we will see from Autism

Speaks to explore all avenues of cause and treatment - I commend

them!

JB

> >

> > http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

> >

>

October 31, 2006

Autism Speaks asked my permission to post.

They are in a great position to represent ALL our kids if they

choose to.

This is one of many positive steps I believe we will see from Autism

Speaks to explore all avenues of cause and treatment - I commend

them!

JB

> >

> > http://www.autismspeaks.org/community/intheirownwords_hey_cdc.php

> >

>

November 1, 2006

Autism Speaks likes to flirt and make veiled promises about supporting

biomedical recoveries and research. It'll take more commitment than

that to get me in bed with them. Habeus corpus! (produce the body!).

Lenny

> >

November 1, 2006

-I second that Lenny.

-- In EOHarm , " schaferatsprynet " <schafer@...> wrote:

>

> Autism Speaks likes to flirt and make veiled promises about supporting

> biomedical recoveries and research. It'll take more commitment than

> that to get me in bed with them. Habeus corpus! (produce the body!).

>

> Lenny

>

> > >

>

November 1, 2006

I THINK AUTISM SPEAKS SHOULD "SPEAK TO BERNIE RIMLAND".

November 1, 2006

I have a feeling this is all a timing tactic for Autism Speaks.zack4399 <forzack_@...> wrote: -I second that Lenny. -- In EOHarm , "schaferatsprynet" <schafer@...> wrote:>> > Autism Speaks likes to flirt and make veiled promises about supporting> biomedical recoveries and research. It'll take more commitment than> that to get me in bed with them. Habeus corpus! (produce the body!). > >

Lenny> > > > >>

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

November 1, 2006

Just a humble question (one of a number of questions) - not a judgment

or even a criticism:

Among my questions with regard to this discussion about the direction

of AS is this: there are 9 current members of the AS Scientific

Affairs Committee. One - Dr. Yeargin-Allsopp is listed below. Listed

below that is a report about a recent speech she - Yeargin-Allsopp

made. No epidemic?

------------------------------------------------------------------------

------------------------------------------------------------------

Scientific Affairs Committee

http://www.autismspeaks.org/science_advisory.php

Scientific and medical experts meet regularly to direct policies and

research for Autism Speaks.

Marshalyn Yeargin-Allsopp, M.D.

Centers for Disease Control

------------------------------------------------------------------------

------------------------------------------------------------------

http://tinyurl.com/w7k5g

Stanforth-Staff writer -Rochester Democrat & Chronicle

(November 1, 2006)

Dr. Marshalyn Yeargin-Allsopp, a specialist in pediatric

neurodevelopmental disabilities, delivered a speech on " Autism: Is

There an Epidemic? " at the annual J. Kirch Conference at the

Burgundy Basin Inn in Pittsford.....

.....Nevertheless, Yeargin-Allsopp said, " we cannot say this represents

an epidemic. "

------------------------------------------------------------------------

------------------------------------------------------------------

Is this a prevailing opinion of the scientific advisory board of AS?

The message repeatedly beamed into our homes on TV by AS is that there

is an epidemic. Can someone clarify these seemingly conflicting

messages. As a parent of an affected child I am simply trying to sort

out what is being said, and what is being advocated. I understand there

are all kinds of private discussions among certain people/groups, but

all that informs my judgment are public and knowable statements. I amy

happy to be enlightened by those who know.

RJK

On Nov 1, 2006, at 9:51 AM, Hooker wrote:

It may be more that there are divisions within the AS organization

that send out a mixed message. The former NAAR folks tend to stick

to pharma like glue (Andy Shih - smooch!!!). The AS organization,

sans the NAAR old guard, however, I believe is more interested in

getting our kids well. Hey Mr. , I heard the NAAR contract is

up in early 2007. Could you do some serious housecleaning then?!!!!

> > > >

> >

>

> ---------------------------------

> Be smarter than spam. See how smart SpamGuard is at giving junk

email the boot with the All-new

>

J. Krakow

Law Office of J. Krakow

225 Broadway

Suite 2700

New York, New York 10007

(212)227-0600 (voice)

(646) 349-1771 (fax)

J. Krakow

Law Office of J. Krakow

225 Broadway

Suite 2700

New York, New York 10007

(212)227-0600 (voice)

(646) 349-1771 (fax)

November 1, 2006

Good point, Bob...

You're humility (and dedication) go without saying!

> > > > >

> > >

> >

> > ---------------------------------

> > Be smarter than spam. See how smart SpamGuard is at giving junk

> email the boot with the All-new

> >

>

> J. Krakow

> Law Office of J. Krakow

> 225 Broadway

> Suite 2700

> New York, New York 10007

> (212)227-0600 (voice)

> (646) 349-1771 (fax)

> J. Krakow

> Law Office of J. Krakow

> 225 Broadway

> Suite 2700

> New York, New York 10007

> (212)227-0600 (voice)

> (646) 349-1771 (fax)

>

November 1, 2006

Good catch. I was just going to point that out myself. It is hard

to take AS too seriously with Shih and Allsop being part of the

crew. They have both been outspoken regarding no real increase in

rates, just better at diagnosing BS.

Tim Booton

> > > > >

> > >

> >

> > ---------------------------------

> > Be smarter than spam. See how smart SpamGuard is at giving junk

> email the boot with the All-new

> >

>

> J. Krakow

> Law Office of J. Krakow

> 225 Broadway

> Suite 2700

> New York, New York 10007

> (212)227-0600 (voice)

> (646) 349-1771 (fax)

> J. Krakow

> Law Office of J. Krakow

> 225 Broadway

> Suite 2700

> New York, New York 10007

> (212)227-0600 (voice)

> (646) 349-1771 (fax)

>

November 1, 2006

Shih and Yeargin-Allsopp need to get out of the lab more... it's so

confining, in so many respects. Maybe the only data they get is

what's shoved through a tiny opening in the locked door.

I am constantly running into people with ASD kids. Last night as my

son and I left a citywide Halloween party (no meltdowns, TG!), we

struck up a conversation with a man on crutches. Their 2-year-old

son was toddling away with his back to me in the semidarkness. Turns

out he's autistic and thankfully getting services.

Of course with Minnesota's high vaccination rates, 1 in 109 school-

age children are receiving autism services; for kids born in 1997

it's even more prevalent. Some other local brainiac parents crunched

the numbers from our state Department of Education.

http://education.state.mn.us/mde/Accountability_Programs/Program_Fina

nce/Special_Education/Child_Count/index.html

- Hokkanen

> > > > > >

> > > >

> > >

> > > ---------------------------------

> > > Be smarter than spam. See how smart SpamGuard is at giving

junk

> > email the boot with the All-new

> > >

> >

> > J. Krakow

> > Law Office of J. Krakow

> > 225 Broadway

> > Suite 2700

> > New York, New York 10007

> > (212)227-0600 (voice)

> > (646) 349-1771 (fax)

> > J. Krakow

> > Law Office of J. Krakow

> > 225 Broadway

> > Suite 2700

> > New York, New York 10007

> > (212)227-0600 (voice)

> > (646) 349-1771 (fax)

> >

>

November 1, 2006

Right, the public statements by Shih and Yeargin-Allsopp do raise

questions which, of course, is why I posed the question. It does not

mean that the Advisory Board or the Board of Directors agrees with

Yeargin-Allsopp. The public face of AS, at least the public relations

face, proclaims that there an epidemic exists, so clearly

Yeargin-Allsopp's position is not controlling at AS, at least for

public relations if not for investment in research projects. In

addition, it is not clear from the report of Yeargin-Allsopp's speech

whether she has adopted a definitive position that changing criteria

and diagnosis is responsible for the increasing numbers, or whether she

takes the position that studies are insufficient to determine this

question. The emphasis of the report, however, suggests strongly that

Yeargin-Allsopp is denying the existence of an epidemic.

These are all open questions, but what can be definitively said is that

the landscape is murky. I am hopeful all will come into better focus -

sooner rather than later.

On Nov 1, 2006, at 11:45 AM, timothybooton wrote:

> Good catch. I was just going to point that out myself. It is hard

> to take AS too seriously with Shih and Allsop being part of the

> crew. They have both been outspoken regarding no real increase in

> rates, just better at diagnosing BS.

>

> Tim Booton

>

> > > > > >

> > > >

> > >

> > > ---------------------------------

> > > Be smarter than spam. See how smart SpamGuard is at giving junk

> > email the boot with the All-new

> > >

> >

> > J. Krakow

> > Law Office of J. Krakow

> > 225 Broadway

> > Suite 2700

> > New York, New York 10007

> > (212)227-0600 (voice)

> > (646) 349-1771 (fax)

> > J. Krakow

> > Law Office of J. Krakow

> > 225 Broadway

> > Suite 2700

> > New York, New York 10007

> > (212)227-0600 (voice)

> > (646) 349-1771 (fax)

> >

>

J. Krakow

Attorney At Law

2001 Marcus Avenue, Suite N125

Lake Success, New York 11042

(516) 354-3300

(646) 349-1771 (fax)

(212) 227-0600 (NYC telephone)

November 1, 2006

This just happened to us yesterday. On the way home from my son's

after school, we stopped in a gas station in a struggle working class

neighborhood in Sacramento to get gas and goodies. In front of us at

the counter was this stereotype figure: a large African American male

around 6' 10 " , 40ish, with a gruff voice, a jacket with a union

emblame and steel toed shoes. He turns to leave, and my son, 18, who

stands just under 6 " reaches up and gently touches his face making

brief eye contact. It's a thing he does with strangers every so often

to my horror. Before the man can react I go into my rescue social

situation with autism routine. I bark at my son " No, Izak! Don't

touch " and then hopefully address the man with " he's autistic " before

he can react. He blinks for a second expressionless, then a big smile

crosses his face. " I have a 4 yr old son with autism, I know! Hello,

Izak, can I buy you a snack? " He turns to me and says, since my son, I

love all kids with autism! " Turns out he has a daughter on the

spectrum, too. Without me saying a word, he offers that he " thinks

it's the shots they got that messed them up. " We exchanged names,

shook hands and left the attendant on the other end of the counter

smiling. Nope, no epidemic around here, I thought. We're just

anecdotal idiot strangers who don't understand better diagnosing.

Lenny

> I am constantly running into people with ASD kids. Last night as my

> son and I left a citywide Halloween party (no meltdowns, TG!), we

> struck up a conversation with a man on crutches. Their 2-year-old

> son was toddling away with his back to me in the semidarkness. Turns

> out he's autistic and thankfully getting services.

>

November 1, 2006

Last Sunday:

10 am, Took my NT son to mass at the small chjurch in our parish. One

severely autistic kid in the back.

1 pm, Took the kids to the playgound, windy, cold day, very few kids,

but one little guy was flapping and spinning and clearly unable to talk.

6 pm dropped off mom at JFK aitrport, walking back to my car there was

another kid flicking and flapping and hooting.

What would give anyone the idea that there is an epidemic.

>

> Wow Lenny,

>

> You made me cry. Sometimes I get the same response. I go to a Bed

and

> Breakfast in Mass. and the owner has a grandson with Aspergers. I go

a

> soda shop in Minnesota and the owner has a grandson with autism. The

> woman at my storage unit has a friend who has a son with autism. The

> list goes on and on..... I probably should count how many people I

> meet in a week and they have a family member or close friend with

> autism. I would guess it's around 5 strangers a week. I know a lot

of

> you go thru it too.

>

November 2, 2006

In 1989, after I graduated from college I worked as an assistant teacher in a therapeutic nursery in Manhattan which had been taken over by an organization called AMAC (association in Manhattan for autistic children). There was one class for severely autistic kids that had 3 kids in it. My class had 7 kids with three on the spectrum. They couldn't fill up the autism class. Today, AMAC (now association for Metroarea autistic children) has over 100 preschoolers in their school. I just can't see how anyone can really think that there were all these undiagnosed autistic kids running around unnoticed.

Ezorsezor@...

From: EOHarm [mailto:EOHarm ] On Behalf Of k kSent: Wednesday, November 01, 2006 5:52 PMEOHarm Subject: Re: Re: JB's "Hey CDC" on Autism Speaks website

When I was pregnant with my son, two other girlfriends of mine were coincidentally, pregnant at the same time! We all had healthy boys, a few years later, one is diagnosed with autism, the other with ADHD, and the third with CAPD. My fitness trainer has a four year old son with aspergers. My older NT son's best friend has a little brother with autism too. No epidemic? I can remember when I was in grade school, we didn't have educational assistants in almost every class room, because we didn't need them!schaferatsprynet <schafersprynet> wrote:

This just happened to us yesterday. On the way home from my son'safter school, we stopped in a gas station in a struggle working classneighborhood in Sacramento to get gas and goodies. In front of us atthe cou! nter was this stereotype figure: a large African American malearound 6' 10", 40ish, with a gruff voice, a jacket with a unionemblame and steel toed shoes. He turns to leave, and my son, 18, whostands just under 6" reaches up and gently touches his face makingbrief eye contact. It's a thing he does with strangers every so oftento my horror. Before the man can react I go into my rescue socialsituation with autism routine. I bark at my son "No, Izak! Don'ttouch" and then hopefully address the man with "he's autistic" beforehe can react. He blinks for a second expressionless, then a big smilecrosses his face. "I have a 4 yr old son with autism, I know! Hello,Izak, can I buy you a snack?" He turns to me and says, since my son, Ilove all kids with autism!" Turns out he has a daughter on thespectrum, too. Without me saying a word, he offers that he "thinksit's the shots they got that messed them up." We exchanged names,shook hands and left the attendant on the other end of the countersmiling. Nope, no epidemic around here, I thought. We're justanecdotal idiot strangers who don't understand better diagnosing.Lenny> I am constantly running into people with ASD kids. Last night as my > son and I left a citywide Halloween party (no meltdowns, TG!), we > struck up a conversation with a man on crutches. Their 2-year-old > son was toddling away with his back to me in the semidarkness. Turns > out he's autistic and thankfully getting services. >

Now you can have a huge leap forward in email: get the new .

November 2, 2006

Epidemic. http://www.whale.to/a/autism_increase.html

>

> > I am constantly running into people with ASD kids. Last night as

my

> > son and I left a citywide Halloween party (no meltdowns, TG!),

we

> > struck up a conversation with a man on crutches. Their 2-year-

old

> > son was toddling away with his back to me in the semidarkness.

Turns

> > out he's autistic and thankfully getting services.

> >

>

> _____

>

> Now you can have a huge leap forward in email:

>

<http://us.rd./evt=40705/*http://mrd.mail./try_beta

?.intl=

> ca> get the new .

>

November 2, 2006

All you have to do is talk to any teacher that has worked for 20 years

or more. The fear in their eyes is palpable. They will tell you that

something is very very wrong.

We had a first grade here a few years back with 12 autistic kids.

Before Keely was born I coached High School Varsity Softball for 5

years. After 4 former athletes contacted me because they had an

autistic child I went back and pulled out my old score books. I was

floored to find in 5 years I had coached a total of 47 Varsity

Athletes. 4 kids with autism, make that 5 counting Keely out of 48

people. This is from a town of only 1,000 people. Unless you believe

that Softball somehow causes Autism, you have a random group of

individuals with 1 in every 9 with a child with Autism.

Our groups in Oregon say, every time you find yourself in a room of 20

people, you will find two or three of you with Autism in your direct

family. The only people claiming there is not an epidemic are those

not living in the real world everyday.

Kendra

November 2, 2006

To add my own story, I returned to my home town last year after

living in Indiana for about 10 years. In the neighborhood I grew up

4 girls that lived all within a few blocks from each other now have

a child with autism.

People in this area think we are unique and that this area has a

disproportionalby high number of children with autism, They can't

wrap their minds around the fact that this is how it is everywhere!

>

> All you have to do is talk to any teacher that has worked for 20

years

> or more. The fear in their eyes is palpable. They will tell you

that

> something is very very wrong.

> We had a first grade here a few years back with 12 autistic kids.

> Before Keely was born I coached High School Varsity Softball for 5

> years. After 4 former athletes contacted me because they had an

> autistic child I went back and pulled out my old score books. I

was

> floored to find in 5 years I had coached a total of 47 Varsity

> Athletes. 4 kids with autism, make that 5 counting Keely out of

48

> people. This is from a town of only 1,000 people. Unless you

believe

> that Softball somehow causes Autism, you have a random group of

> individuals with 1 in every 9 with a child with Autism.

> Our groups in Oregon say, every time you find yourself in a room

of 20

> people, you will find two or three of you with Autism in your

direct

> family. The only people claiming there is not an epidemic are

those

> not living in the real world everyday.

>

> Kendra

>

November 2, 2006

To add my own story, I returned to my home town last year after

living in Indiana for about 10 years. In the neighborhood I grew up

4 girls that lived all within a few blocks from each other now have

a child with autism.

People in this area think we are unique and that this area has a

disproportionalby high number of children with autism, They can't

wrap their minds around the fact that this is how it is everywhere!

>

> All you have to do is talk to any teacher that has worked for 20

years

> or more. The fear in their eyes is palpable. They will tell you

that

> something is very very wrong.

> We had a first grade here a few years back with 12 autistic kids.

> Before Keely was born I coached High School Varsity Softball for 5

> years. After 4 former athletes contacted me because they had an

> autistic child I went back and pulled out my old score books. I

was

> floored to find in 5 years I had coached a total of 47 Varsity

> Athletes. 4 kids with autism, make that 5 counting Keely out of

48

> people. This is from a town of only 1,000 people. Unless you

believe

> that Softball somehow causes Autism, you have a random group of

> individuals with 1 in every 9 with a child with Autism.

> Our groups in Oregon say, every time you find yourself in a room

of 20

> people, you will find two or three of you with Autism in your

direct

> family. The only people claiming there is not an epidemic are

those

> not living in the real world everyday.

>

> Kendra

>

November 2, 2006

When I lived in Ohio we had 10 kids on the spectrum, and quite a few

others who could have gotten a diagnosis, in our neighborhood of 180

houses. Many were diagnosed while living in the town - some moved

there for the schools.

I sat in a tiny Catholic Church in Massaschusetts and saw TWO families

holding PECS for their children.

We're like vampires -- we ARE out here and we're going to suck the

social, mental health and medical support systems dry over the next

decades if someone doesn't have the heart and chutzpah to really help

us out.

KIM

November 2, 2006

In Indiana on my street with a whopping total of 14 houses. Just on

my side of the street, out of 7 houses there were two kids (right

next door to each other) diagnosed with Tourette's. Also, the

brother of one of them had severe ADHD and undiagnosed

learning/behavior problems and down the street my son with autism.

On my street now (in Ohio) we have a next door neighbor with

dyslexia and other learning problems, on the other side a boy with

undiagnosed learning problems. Further down the street a boy with

severe speech problems and learning problems, 4 doors down a boy

with auditory processig problems, ADHD and Tourette like behaviors.

These are just the families I know.

Autism is the tip of the iceberg.

Where the hell were all the kids like them when I was growing up? By

the way, all of these boys are 10 years old, born in 95 and 96.

>

> When I lived in Ohio we had 10 kids on the spectrum, and quite a

few

> others who could have gotten a diagnosis, in our neighborhood of

180

> houses. Many were diagnosed while living in the town - some moved

> there for the schools.

November 2, 2006

What a beautiful story, it brought me to tears. My son also

likes to grab onto strangers but he is 6 so occasionally he’s at the

perfect height to grab something a little more mortifying. Sometimes I

think our kids have a sixth sense for who the good guys are. -

schaferatsprynet

<schafersprynet> wrote:

This just happened to us yesterday. On the way home from my son's

after school, we stopped in a gas station in a struggle working class

neighborhood in Sacramento

to get gas and goodies. In front of us at

the cou! nter was this stereotype figure: a large African American male

around 6' 10 " , 40ish, with a gruff voice, a jacket with a union

emblame and steel toed shoes. He turns to leave, and my son, 18, who

stands just under 6 " reaches up and gently touches his face making

brief eye contact. It's a thing he does with strangers every so often

to my horror. Before the man can react I go into my rescue social

situation with autism routine. I bark at my son " No, Izak! Don't

touch " and then hopefully address the man with " he's autistic "

before