RE: Autism spectrum disorders

[Guest guest]

/Bonnie,

there is a big autism conference that will be here in Boston in Oct. and the

focus is the newest research on brain development and the genetics of autism.

There is some new information (well researched) about early brain development

and the fact that children who are later diagnosed with autism have, in fact,

different brain structure and brain growth. I can't go to this but it is an

interesting idea. I don't think this is the first time this information has been

discussed, but I think it is the first time (certainly for me) that they are

making genetic and familial links.

I agree with you, Bonnie, that the diagnostic criteria is better and wider--the

kids who were just " odd " , " loners " , " geeks " but all brilliant are now included

in the Asperger's category (not all of course) and for the kids with more severe

problems, they also are fitting into the autism spectrum when years ago they

would not have been.

And , I agree with you, too!! The kinds of things that are in/around us

surely must have play here. I am, however, one of the staunch believers in

innoculations and I have done a great deal of research and have a lot of

experience with Rubella so I am biased, I realize.

So, ladies, I agree!

pam

[Guest guest]

/Bonnie,

there is a big autism conference that will be here in Boston in Oct. and the

focus is the newest research on brain development and the genetics of autism.

There is some new information (well researched) about early brain development

and the fact that children who are later diagnosed with autism have, in fact,

different brain structure and brain growth. I can't go to this but it is an

interesting idea. I don't think this is the first time this information has been

discussed, but I think it is the first time (certainly for me) that they are

making genetic and familial links.

I agree with you, Bonnie, that the diagnostic criteria is better and wider--the

kids who were just " odd " , " loners " , " geeks " but all brilliant are now included

in the Asperger's category (not all of course) and for the kids with more severe

problems, they also are fitting into the autism spectrum when years ago they

would not have been.

And , I agree with you, too!! The kinds of things that are in/around us

surely must have play here. I am, however, one of the staunch believers in

innoculations and I have done a great deal of research and have a lot of

experience with Rubella so I am biased, I realize.

So, ladies, I agree!

pam

[Guest guest]

Hi Pam,

One thing that happens is that if the topic of vaccines is brought up,

people often assume that one is against vaccines. One of the amazing

things, though, is that vaccines can be given without mercury preservative

but are not always done that way due to cost constraints. Contrary to what

is sometimes reported, mercury is still in a variety of vaccinations and flu

shots. But the same shots are available WITHOUT mercury preservative for a

higher fee. It seems good for people to know there are alternatives.

Mercury is a neurotoxin.

There is no data or research that in any way proves the safety of mercury

preservative, thimerosol, in vaccines! The general public mostly believes

that if a vaccination is required, it must be safe. This may or may not be

true. But it is important to know that no safety data exists, or has been

brought forth, which is troubling, at best, since most of us and most of our

children have had mercury preservative in vaccinations at some point. A

good read is Evidence of Harm by Kirby which chronicles a search for

finite answers on the topic.

Additionally, regarding the MMR, which does not have mercury preservative,

Harvard doctors have isolated the kind of measles in the vaccination in the

digestive tracts of some individuals with autism who experience digestive

problems. There is concern that the vaccination led to the condition.

Regarding the identification of more people with autism, one of the factors

to remember is that California, which tracks autism statistics, only lists

full-blown autism in the statistics. PDD and aspergers are not included in

the numbers.

These topics are volatile and controversial and confusing at best. There

are many unanswered questions, so answers must be pursued. There are many

sources to check if one is interested in further information. So, even if

one is in favor of vaccinations, there still are details to check to insure

that one's health needs and concerns are addressed.

I personally think it is worthwhile to read up on these topics as we are

central partners to our health with our health provider. As with anything,

there are generally many perspectives from which to look at any one topic.

So what I am saying here is that awareness that mercury preservative is in

some vaccines is important to me and is information that each of us should

possess as we make our health decisions. Additionally, it's important to

know that many vaccines have mercury-free versions.

RE: Autism spectrum disorders

>

>

>

> /Bonnie,

> there is a big autism conference that will be here in Boston in Oct. and

> the focus is the newest research on brain development and the genetics of

> autism. There is some new information (well researched) about early

> brain development and the fact that children who are later diagnosed with

> autism have, in fact, different brain structure and brain growth. I can't

> go to this but it is an interesting idea. I don't think this is the first

> time this information has been discussed, but I think it is the first time

> (certainly for me) that they are making genetic and familial links.

>

> I agree with you, Bonnie, that the diagnostic criteria is better and

> wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant

> are now included in the Asperger's category (not all of course) and for

> the kids with more severe problems, they also are fitting into the autism

> spectrum when years ago they would not have been.

>

> And , I agree with you, too!! The kinds of things that are in/around

> us surely must have play here. I am, however, one of the staunch

> believers in innoculations and I have done a great deal of research and

> have a lot of experience with Rubella so I am biased, I realize.

>

> So, ladies, I agree!

> pam

>

>

>

[Guest guest]

i know autisim has recently like the last few aus confrences been i

ddentified as a featrue in chargers i dont have it but i do know a few

charger in aus who do so it is and tim would agree with me i think a growing

feature and one i think that isnt put into the criteria enough LOL once the

person reaches school age peopel should think about it and check out on it

but to my belief not everyone knows so everyones like whats going on here

lol ellen

>

> Hi Pam,

>

> One thing that happens is that if the topic of vaccines is brought up,

> people often assume that one is against vaccines. One of the amazing

> things, though, is that vaccines can be given without mercury preservative

>

> but are not always done that way due to cost constraints. Contrary to what

>

> is sometimes reported, mercury is still in a variety of vaccinations and

> flu

> shots. But the same shots are available WITHOUT mercury preservative for a

>

> higher fee. It seems good for people to know there are alternatives.

> Mercury is a neurotoxin.

>

> There is no data or research that in any way proves the safety of mercury

> preservative, thimerosol, in vaccines! The general public mostly believes

> that if a vaccination is required, it must be safe. This may or may not be

>

> true. But it is important to know that no safety data exists, or has been

> brought forth, which is troubling, at best, since most of us and most of

> our

> children have had mercury preservative in vaccinations at some point. A

> good read is Evidence of Harm by Kirby which chronicles a search for

>

> finite answers on the topic.

>

> Additionally, regarding the MMR, which does not have mercury preservative,

>

> Harvard doctors have isolated the kind of measles in the vaccination in

> the

> digestive tracts of some individuals with autism who experience digestive

> problems. There is concern that the vaccination led to the condition.

>

> Regarding the identification of more people with autism, one of the

> factors

> to remember is that California, which tracks autism statistics, only lists

>

> full-blown autism in the statistics. PDD and aspergers are not included in

>

> the numbers.

>

> These topics are volatile and controversial and confusing at best. There

> are many unanswered questions, so answers must be pursued. There are many

> sources to check if one is interested in further information. So, even if

> one is in favor of vaccinations, there still are details to check to

> insure

> that one's health needs and concerns are addressed.

>

> I personally think it is worthwhile to read up on these topics as we are

> central partners to our health with our health provider. As with anything,

>

> there are generally many perspectives from which to look at any one topic.

>

> So what I am saying here is that awareness that mercury preservative is in

>

> some vaccines is important to me and is information that each of us should

>

> possess as we make our health decisions. Additionally, it's important to

> know that many vaccines have mercury-free versions.

>

>

>

>

> RE: Autism spectrum disorders

>

> >

> >

> >

> > /Bonnie,

> > there is a big autism conference that will be here in Boston in Oct. and

>

> > the focus is the newest research on brain development and the genetics

> of

> > autism. There is some new information (well researched) about early

> > brain development and the fact that children who are later diagnosed

> with

> > autism have, in fact, different brain structure and brain growth. I

> can't

> > go to this but it is an interesting idea. I don't think this is the

> first

> > time this information has been discussed, but I think it is the first

> time

> > (certainly for me) that they are making genetic and familial links.

> >

> > I agree with you, Bonnie, that the diagnostic criteria is better and

> > wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant

>

> > are now included in the Asperger's category (not all of course) and for

> > the kids with more severe problems, they also are fitting into the

> autism

> > spectrum when years ago they would not have been.

> >

> > And , I agree with you, too!! The kinds of things that are

> in/around

> > us surely must have play here. I am, however, one of the staunch

> > believers in innoculations and I have done a great deal of research and

> > have a lot of experience with Rubella so I am biased, I realize.

> >

> > So, ladies, I agree!

> > pam

> >

> >

> >

[Guest guest]

,

Yes, yes, yes, and yes!!!

I especially liked what you said about us all being partners in our own

health care. Truer words could not be spoken. It does get hard, though,

doesn¹t it when the kids are so very sick for so very long and as parents

you are run ragged with the chase.

Thanks, your knowledge of this subject is so amazing and I love when you

post these helpful tips!!

pam

> Hi Pam,

>

> One thing that happens is that if the topic of vaccines is brought up,

> people often assume that one is against vaccines. One of the amazing

> things, though, is that vaccines can be given without mercury preservative

> but are not always done that way due to cost constraints. Contrary to what

> is sometimes reported, mercury is still in a variety of vaccinations and flu

> shots. But the same shots are available WITHOUT mercury preservative for a

> higher fee. It seems good for people to know there are alternatives.

> Mercury is a neurotoxin.

>

> There is no data or research that in any way proves the safety of mercury

> preservative, thimerosol, in vaccines! The general public mostly believes

> that if a vaccination is required, it must be safe. This may or may not be

> true. But it is important to know that no safety data exists, or has been

> brought forth, which is troubling, at best, since most of us and most of our

> children have had mercury preservative in vaccinations at some point. A

> good read is Evidence of Harm by Kirby which chronicles a search for

> finite answers on the topic.

>

> Additionally, regarding the MMR, which does not have mercury preservative,

> Harvard doctors have isolated the kind of measles in the vaccination in the

> digestive tracts of some individuals with autism who experience digestive

> problems. There is concern that the vaccination led to the condition.

>

> Regarding the identification of more people with autism, one of the factors

> to remember is that California, which tracks autism statistics, only lists

> full-blown autism in the statistics. PDD and aspergers are not included in

> the numbers.

>

> These topics are volatile and controversial and confusing at best. There

> are many unanswered questions, so answers must be pursued. There are many

> sources to check if one is interested in further information. So, even if

> one is in favor of vaccinations, there still are details to check to insure

> that one's health needs and concerns are addressed.

>

> I personally think it is worthwhile to read up on these topics as we are

> central partners to our health with our health provider. As with anything,

> there are generally many perspectives from which to look at any one topic.

>

> So what I am saying here is that awareness that mercury preservative is in

> some vaccines is important to me and is information that each of us should

> possess as we make our health decisions. Additionally, it's important to

> know that many vaccines have mercury-free versions.

>

>

>

> RE: Autism spectrum disorders

>

>

>>

>>

>>

>> /Bonnie,

>> there is a big autism conference that will be here in Boston in Oct. and

>> the focus is the newest research on brain development and the genetics of

>> autism. There is some new information (well researched) about early

>> brain development and the fact that children who are later diagnosed with

>> autism have, in fact, different brain structure and brain growth. I can't

>> go to this but it is an interesting idea. I don't think this is the first

>> time this information has been discussed, but I think it is the first time

>> (certainly for me) that they are making genetic and familial links.

>>

>> I agree with you, Bonnie, that the diagnostic criteria is better and

>> wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant

>> are now included in the Asperger's category (not all of course) and for

>> the kids with more severe problems, they also are fitting into the autism

>> spectrum when years ago they would not have been.

>>

>> And , I agree with you, too!! The kinds of things that are in/around

>> us surely must have play here. I am, however, one of the staunch

>> believers in innoculations and I have done a great deal of research and

>> have a lot of experience with Rubella so I am biased, I realize.

>>

>> So, ladies, I agree!

>> pam

>>

>>

>>

[Guest guest]

pam do you have more info on the conference? my friend's son has autism and she

NEEDS answers.

RE: Autism spectrum disorders

/Bonnie,

there is a big autism conference that will be here in Boston in Oct. and the

focus is the newest research on brain development and the genetics of autism.

There is some new information (well researched) about early brain development

and the fact that children who are later diagnosed with autism have, in fact,

different brain structure and brain growth. I can't go to this but it is an

interesting idea. I don't think this is the first time this information has been

discussed, but I think it is the first time (certainly for me) that they are

making genetic and familial links.

I agree with you, Bonnie, that the diagnostic criteria is better and

wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant are now

included in the Asperger's category (not all of course) and for the kids with

more severe problems, they also are fitting into the autism spectrum when years

ago they would not have been.

And , I agree with you, too!! The kinds of things that are in/around us

surely must have play here. I am, however, one of the staunch believers in

innoculations and I have done a great deal of research and have a lot of

experience with Rubella so I am biased, I realize.

So, ladies, I agree!

pam

[Guest guest]

Thank you Pam!! :-) Yes, I agree, it is very hard when the kids have

ongoing issues for a long time.

And DITTO about all your knowledge and inspiration you generously share with

the list.

RE: Autism spectrum disorders

>

>

>>

>>

>>

>> /Bonnie,

>> there is a big autism conference that will be here in Boston in Oct. and

>> the focus is the newest research on brain development and the genetics of

>> autism. There is some new information (well researched) about early

>> brain development and the fact that children who are later diagnosed with

>> autism have, in fact, different brain structure and brain growth. I

>> can't

>> go to this but it is an interesting idea. I don't think this is the first

>> time this information has been discussed, but I think it is the first

>> time

>> (certainly for me) that they are making genetic and familial links.

>>

>> I agree with you, Bonnie, that the diagnostic criteria is better and

>> wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant

>> are now included in the Asperger's category (not all of course) and for

>> the kids with more severe problems, they also are fitting into the autism

>> spectrum when years ago they would not have been.

>>

>> And , I agree with you, too!! The kinds of things that are in/around

>> us surely must have play here. I am, however, one of the staunch

>> believers in innoculations and I have done a great deal of research and

>> have a lot of experience with Rubella so I am biased, I realize.

>>

>> So, ladies, I agree!

>> pam

>>

>>

>>

[Guest guest]

Hi ,

I don¹t know about answers but, here is the information re: the conference.

Actually, not really a conference, looks like ³Talk².

It is part of the Brain Development and Disorders Project Colloquim Series

at MIT (I think I said BU).

³Autism in the Beginning: What Goes Wrong with Brain Growth and Function in

the First Years of Life²

Courchesne, PhD.

Professor of Neuroscience, Neuroscience Dept., University of California, San

Diego School of Medicine.

6:00 pm Wednesday, Sept. 20, 2006

MIT Building 46-3003 (auditorium), followed by a reception

Building address: 43 Vassar St., Cambridge MA 02139

RSVP to Imavros@...

³Due to the relatively late age of clinical diagnosis of autism, the early

brain pathology of children with autism has remained largely unstudied. The

increased use of retrospective measures such as head circumference along

with a surge of MRI studies of toddlers with autism, have opened a whole new

area of research and discovery. Recent studies have now shown that abnormal

brain overgrowth occurs during the first 2 years of life in children with

autism. By 2 ­ 4 years of age, the most deviant overgrowth is cerebral,

cerebellar, and limbic structures that underlie higher-order cognitive,

social, emotiona, and language functions. Excessive growth is followed by

abnormally slow or arrested growth. Deviant brain growth in autism occurs

at the very time when the formation of cerebral circuitry is at its most

exuberant and vulnerable stage, and it may signal disruption of this process

of circuit formation. The resulting aberrant connectivity and dysfunction

may lead to the development of autistic behaviors. Abnormal functioning in

these cerebral and cerebellar structures has been shown in autistic toddlers

for the first time in recent unpublished fMRI studies. To discover the

causes, neural substrates, early-warning signs and effective treatments of

autism, future research should focus on elucidating the neurobiological

defects that underlie the brain growth abnormalities in autism that appear

during these critical first years of life.²

Hosted by li

Supported by the Simons Foundation and the Anne and Marcus Family

Foundation

This is what I have!!! This is all from the flyer and all I know about this.

Does your friend live here in MA?

pam

[Guest guest]

Thank YOU, . You make me blush.

pam

> Thank you Pam!! :-) Yes, I agree, it is very hard when the kids have

> ongoing issues for a long time.

>

> And DITTO about all your knowledge and inspiration you generously share with

> the list.

>

>

> RE: Autism spectrum disorders

>>

>>

>>>

>>>

>>>

>>> /Bonnie,

>>> there is a big autism conference that will be here in Boston in Oct. and

>>> the focus is the newest research on brain development and the genetics of

>>> autism. There is some new information (well researched) about early

>>> brain development and the fact that children who are later diagnosed with

>>> autism have, in fact, different brain structure and brain growth. I

>>> can't

>>> go to this but it is an interesting idea. I don't think this is the first

>>> time this information has been discussed, but I think it is the first

>>> time

>>> (certainly for me) that they are making genetic and familial links.

>>>

>>> I agree with you, Bonnie, that the diagnostic criteria is better and

>>> wider--the kids who were just " odd " , " loners " , " geeks " but all brilliant

>>> are now included in the Asperger's category (not all of course) and for

>>> the kids with more severe problems, they also are fitting into the autism

>>> spectrum when years ago they would not have been.

>>>

>>> And , I agree with you, too!! The kinds of things that are in/around

>>> us surely must have play here. I am, however, one of the staunch

>>> believers in innoculations and I have done a great deal of research and

>>> have a lot of experience with Rubella so I am biased, I realize.

>>>

>>> So, ladies, I agree!

>>> pam

>>>

>>>

>>>

[Guest guest]

thanks Pam--she lives in nj

maria

Re: Autism spectrum disorders

Hi ,

I don¹t know about answers but, here is the information re: the conference.

Actually, not really a conference, looks like ³Talk².

It is part of the Brain Development and Disorders Project Colloquim Series

at MIT (I think I said BU).

³Autism in the Beginning: What Goes Wrong with Brain Growth and Function in

the First Years of Life²

Courchesne, PhD.

Professor of Neuroscience, Neuroscience Dept., University of California, San

Diego School of Medicine.

6:00 pm Wednesday, Sept. 20, 2006

MIT Building 46-3003 (auditorium), followed by a reception

Building address: 43 Vassar St., Cambridge MA 02139

RSVP to Imavros@...

³Due to the relatively late age of clinical diagnosis of autism, the early

brain pathology of children with autism has remained largely unstudied. The

increased use of retrospective measures such as head circumference along

with a surge of MRI studies of toddlers with autism, have opened a whole new

area of research and discovery. Recent studies have now shown that abnormal

brain overgrowth occurs during the first 2 years of life in children with

autism. By 2 ­ 4 years of age, the most deviant overgrowth is cerebral,

cerebellar, and limbic structures that underlie higher-order cognitive,

social, emotiona, and language functions. Excessive growth is followed by

abnormally slow or arrested growth. Deviant brain growth in autism occurs

at the very time when the formation of cerebral circuitry is at its most

exuberant and vulnerable stage, and it may signal disruption of this process

of circuit formation. The resulting aberrant connectivity and dysfunction

may lead to the development of autistic behaviors. Abnormal functioning in

these cerebral and cerebellar structures has been shown in autistic toddlers

for the first time in recent unpublished fMRI studies. To discover the

causes, neural substrates, early-warning signs and effective treatments of

autism, future research should focus on elucidating the neurobiological

defects that underlie the brain growth abnormalities in autism that appear

during these critical first years of life.²

Hosted by li

Supported by the Simons Foundation and the Anne and Marcus Family

Foundation

This is what I have!!! This is all from the flyer and all I know about this.

Does your friend live here in MA?

pam

[Guest guest]

,

I find what you wrote quite informative. You certainly are a wealth of

knowledge. I enjoy reading your posts.

I do get more than worried though when people choose to not vaccinate their

children due to what it " might " do to them. I mean NO vaccinations. Within two

years I worked with three children of different families who were never

vaccinated for anything for that very reason. That not only put them at risk,

it

also was risking the health of others who came into contact with them,

including two medically fragile students. The interesting fact though is that

all

three children, from different families, were diagnosed with severe forms of

Autism. No vaccinations is scary stuff.

I would like to read up on the California statistics. I am wondering how

they qualify autism. The department of education and the department of mental

health has statistics on Autism Spectrum Disorders which include Pervasive

Development Disorders-Not Otherwise Specified (PDD-NOS), Aspergers and other

rare

disorders.

We all understand the dramatic increase in numbers is something to be aware

of. As far as I have seen there been no medically proven or documented link

specifically to mercury in vaccines. That doesn't mean it isn't one of the

causes. I believe more research needs to be done. And gosh, there's more junk

going into our bodies than ever before. Ugh. Societies advances.

I am glad you shared that parents need to be aware of what is in things they

are putting into their children's bodies including the vaccine and mercury.

Somehow there must be something done to allow parents to have the knowledge of

the what and the why and that they have the right to say no to it and THEN

choose the mercury free version. You are so right in that there are many

unanswered questions. Oh how we all must support the research to investigate

this

further. Yet I have to say the parents of children who have autism are

becomming

a huge political voice. That'll move mountains.

I guess my biggest point in all of this is that the diagnosis of our children

having Autism is often quite wrong. I mean blatantly wrong. In my opinion

that is harmful to the child.

Think of our children and then think of the indicators for Autism. They

include:

Does not babble or make meaningful gestures by age of 1

Does not speak one word by 16 months

Poor eye contact

Doesn't smile

Seems to be hearing impaired.

How many of our children fit that bill!?! I would venture to say 99% of

them. But there's more. Check this out. It is some of the traits of Autism.

They are:

Insistence on sameness; resistance to change

Difficulty in expressing needs, using gestures or pointing instead of words

Repeating words or phrases in place of normal, responsive language

Laughing (and/or crying) for no apparent reason showing distress for reasons

not apparent to others

Preference to being alone; aloof manner

Tantrums

Difficulty in mixing with others

Not wanting to cuddle or be cuddled

Little or no eye contact

Unresponsive to normal teaching methods

Sustained odd play

Spinning objects

Obsessive attachment to objects

Apparent over-sensitivity or under-sensitivity to pain

No real fears of danger

Noticeable physical over-activity or extreme under-activity

Uneven gross/fine motor skills

Non responsive to verbal cues; acts as if deaf, although hearing tests in

normal range.

I don't know about others but with that Patty would have been identified as

Autistic. She has CHARGE which is a multisensory disability and not autistic

in nature. That's my big band wagon. CHARGE is not Autism. We must be very

careful of having an autism label on our children. There are minute changes

for education but the minute things can end up as huge later on. Does that

mean children who have CHARGE can't have autism? No. But it sure as heck isn't

the first label our children should ever have even if it gets them some sort

of service within the educational system. It's just not " good enough. " We all

should be very careful of that deep black hole that is called labeling.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

i agree bonne charge and autistsim may have soem simlarities but they arent

the same

>

> ,

>

> I find what you wrote quite informative. You certainly are a wealth of

> knowledge. I enjoy reading your posts.

>

> I do get more than worried though when people choose to not vaccinate

> their

> children due to what it " might " do to them. I mean NO vaccinations. Within

> two

> years I worked with three children of different families who were never

> vaccinated for anything for that very reason. That not only put them at

> risk, it

> also was risking the health of others who came into contact with them,

> including two medically fragile students. The interesting fact though is

> that all

> three children, from different families, were diagnosed with severe forms

> of

> Autism. No vaccinations is scary stuff.

>

> I would like to read up on the California statistics. I am wondering how

> they qualify autism. The department of education and the department of

> mental

> health has statistics on Autism Spectrum Disorders which include Pervasive

>

> Development Disorders-Not Otherwise Specified (PDD-NOS), Aspergers and

> other rare

> disorders.

>

> We all understand the dramatic increase in numbers is something to be

> aware

> of. As far as I have seen there been no medically proven or documented

> link

> specifically to mercury in vaccines. That doesn't mean it isn't one of the

>

> causes. I believe more research needs to be done. And gosh, there's more

> junk

> going into our bodies than ever before. Ugh. Societies advances.

>

> I am glad you shared that parents need to be aware of what is in things

> they

> are putting into their children's bodies including the vaccine and

> mercury.

> Somehow there must be something done to allow parents to have the

> knowledge of

> the what and the why and that they have the right to say no to it and THEN

>

> choose the mercury free version. You are so right in that there are many

> unanswered questions. Oh how we all must support the research to

> investigate this

> further. Yet I have to say the parents of children who have autism are

> becomming

> a huge political voice. That'll move mountains.

>

> I guess my biggest point in all of this is that the diagnosis of our

> children

> having Autism is often quite wrong. I mean blatantly wrong. In my opinion

> that is harmful to the child.

>

> Think of our children and then think of the indicators for Autism. They

> include:

>

> Does not babble or make meaningful gestures by age of 1

> Does not speak one word by 16 months

> Poor eye contact

> Doesn't smile

> Seems to be hearing impaired.

>

> How many of our children fit that bill!?! I would venture to say 99% of

> them. But there's more. Check this out. It is some of the traits of

> Autism.

> They are:

>

> Insistence on sameness; resistance to change

> Difficulty in expressing needs, using gestures or pointing instead of

> words

> Repeating words or phrases in place of normal, responsive language

> Laughing (and/or crying) for no apparent reason showing distress for

> reasons

> not apparent to others

> Preference to being alone; aloof manner

> Tantrums

> Difficulty in mixing with others

> Not wanting to cuddle or be cuddled

> Little or no eye contact

> Unresponsive to normal teaching methods

> Sustained odd play

> Spinning objects

> Obsessive attachment to objects

> Apparent over-sensitivity or under-sensitivity to pain

> No real fears of danger

> Noticeable physical over-activity or extreme under-activity

> Uneven gross/fine motor skills

> Non responsive to verbal cues; acts as if deaf, although hearing tests in

> normal range.

>

> I don't know about others but with that Patty would have been identified

> as

> Autistic. She has CHARGE which is a multisensory disability and not

> autistic

> in nature. That's my big band wagon. CHARGE is not Autism. We must be very

>

> careful of having an autism label on our children. There are minute

> changes

> for education but the minute things can end up as huge later on. Does that

>

> mean children who have CHARGE can't have autism? No. But it sure as heck

> isn't

> the first label our children should ever have even if it gets them some

> sort

> of service within the educational system. It's just not " good enough. " We

> all

> should be very careful of that deep black hole that is called labeling.

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

[Guest guest]

True, Ellen. CHARGE and autism are not the same as far as we know and

according to many individuals..

But as Meg so often says, children with CHARGE can have autism. With the

numbers coming up at 1 per 166 children having autism, certainly there could

be 1 child with CHARGE per 166 children with CHARGE that also has autism.

Or the numbers could be higher or lower for how many children with CHARGE

also have autism. To my knowledge there are no statistics that illustrate

how many children with CHARGE also have autism.

Autism is not fully understood yet. And, CHARGE is not fully understood

yet. Further and continued study in each area is opening promising doors

for those with these conditions.

As far as I am concerned, what needs to happen is that children with CHARGE

or children with CHARGE and autism, need services and treatments that help

them achieve their potential. What saddens me is to see a child with CHARGE

who also fits the criteria for autism, whose family does not know of the

recoveries that are happening for children with autism. That is a crime as

far as I am concerned. Knowing what is being thought about is very

important to know. It gives people options and choices. In some cases it

gives families hope.

Re: Autism spectrum disorders

>i agree bonne charge and autistsim may have soem simlarities but they arent

> the same

>

>

>>

>> ,

>>

>> I find what you wrote quite informative. You certainly are a wealth of

>> knowledge. I enjoy reading your posts.

>>

>> I do get more than worried though when people choose to not vaccinate

>> their

>> children due to what it " might " do to them. I mean NO vaccinations.

>> Within

>> two

>> years I worked with three children of different families who were never

>> vaccinated for anything for that very reason. That not only put them at

>> risk, it

>> also was risking the health of others who came into contact with them,

>> including two medically fragile students. The interesting fact though is

>> that all

>> three children, from different families, were diagnosed with severe forms

>> of

>> Autism. No vaccinations is scary stuff.

>>

>> I would like to read up on the California statistics. I am wondering how

>> they qualify autism. The department of education and the department of

>> mental

>> health has statistics on Autism Spectrum Disorders which include

>> Pervasive

>>

>> Development Disorders-Not Otherwise Specified (PDD-NOS), Aspergers and

>> other rare

>> disorders.

>>

>> We all understand the dramatic increase in numbers is something to be

>> aware

>> of. As far as I have seen there been no medically proven or documented

>> link

>> specifically to mercury in vaccines. That doesn't mean it isn't one of

>> the

>>

>> causes. I believe more research needs to be done. And gosh, there's more

>> junk

>> going into our bodies than ever before. Ugh. Societies advances.

>>

>> I am glad you shared that parents need to be aware of what is in things

>> they

>> are putting into their children's bodies including the vaccine and

>> mercury.

>> Somehow there must be something done to allow parents to have the

>> knowledge of

>> the what and the why and that they have the right to say no to it and

>> THEN

>>

>> choose the mercury free version. You are so right in that there are many

>> unanswered questions. Oh how we all must support the research to

>> investigate this

>> further. Yet I have to say the parents of children who have autism are

>> becomming

>> a huge political voice. That'll move mountains.

>>

>> I guess my biggest point in all of this is that the diagnosis of our

>> children

>> having Autism is often quite wrong. I mean blatantly wrong. In my opinion

>> that is harmful to the child.

>>

>> Think of our children and then think of the indicators for Autism. They

>> include:

>>

>> Does not babble or make meaningful gestures by age of 1

>> Does not speak one word by 16 months

>> Poor eye contact

>> Doesn't smile

>> Seems to be hearing impaired.

>>

>> How many of our children fit that bill!?! I would venture to say 99% of

>> them. But there's more. Check this out. It is some of the traits of

>> Autism.

>> They are:

>>

>> Insistence on sameness; resistance to change

>> Difficulty in expressing needs, using gestures or pointing instead of

>> words

>> Repeating words or phrases in place of normal, responsive language

>> Laughing (and/or crying) for no apparent reason showing distress for

>> reasons

>> not apparent to others

>> Preference to being alone; aloof manner

>> Tantrums

>> Difficulty in mixing with others

>> Not wanting to cuddle or be cuddled

>> Little or no eye contact

>> Unresponsive to normal teaching methods

>> Sustained odd play

>> Spinning objects

>> Obsessive attachment to objects

>> Apparent over-sensitivity or under-sensitivity to pain

>> No real fears of danger

>> Noticeable physical over-activity or extreme under-activity

>> Uneven gross/fine motor skills

>> Non responsive to verbal cues; acts as if deaf, although hearing tests in

>> normal range.

>>

>> I don't know about others but with that Patty would have been identified

>> as

>> Autistic. She has CHARGE which is a multisensory disability and not

>> autistic

>> in nature. That's my big band wagon. CHARGE is not Autism. We must be

>> very

>>

>> careful of having an autism label on our children. There are minute

>> changes

>> for education but the minute things can end up as huge later on. Does

>> that

>>

>> mean children who have CHARGE can't have autism? No. But it sure as heck

>> isn't

>> the first label our children should ever have even if it gets them some

>> sort

>> of service within the educational system. It's just not " good enough. " We

>> all

>> should be very careful of that deep black hole that is called labeling.

>>

>>

>> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>>

>>

[Guest guest]

Bonnie,

You made some interesting comments. One thing that saddens me, though, is

that whenever I mention that there is validity in learning what vaccines

have in them and how they may affect the immune system, people jump all over

me. I didn't say I was for or against vaccines, only that there are

important questions to ask. Your opinion is that vaccines are important.

Other equally intelligent and thoughtful individuals have come to varying or

opposing opinions. It makes a lot of sense to become educated on the

subject.

Many times in the past I have mentioned sources of information on the topic.

One such source is a book entitled: What Your Doctor May Not Tell You About

Children's Vaccinations by Cave, MD. This book has some frank

discussions of factors that I see as important for families to consider.

There is information about preservatives and possible vaccine schedules that

may be safer than what is more traditionally suggested.

Each person is entitled to make decisions about these important matters.

What seems critical is to make decisions based on available information.

As for California statistics, the numbers for California are based on those

diagnosed with autism through the Regional Centers in that state. These are

children with full-blown autism, not PDD or Aspergers..

You mention that the diagnosis of autism in some CHARGE children is wrong.

I agree. Fully. But for some other children it is accurate. That can't be

overlooked. And some parts of autism itself could turn out to have some

similar causes as some of the conditions we see in CHARGE. For example, one

of the reasons children with Autism may rock may ultimately be found to be

some kind of more subtle problem with the vestibular system such as children

with CHARGE have. Or, that might not be found at all. It is just not fully

understood yet.

I think there is a significant stigma associated with autism. As the parent

of a child diagnosed with autism, it feels hurtful to me that is is viewed

with such disdain on this list where help and support is said to be so

present. So often I mention some major gain that my child has made and the

success is met with silence on this list.

Your child with CHARGE does not have autism. You are lucky. She is lucky.

But not diagnosing those who do have autism can cause serious delays in

obtaining valid treatments. Our child was not diagnosed with autism in a

timely manner. This led to several years delay in obtaining state of the

art educational and medical treatments for autism. There's no reason for

that. All reasonable professionals would agree that early intevention is

phenominally important.

Thank you for your insights, Bonnie. Discussion is very important. I think

respect must be maintained for differing views.

Re: Autism spectrum disorders

> ,

>

> I find what you wrote quite informative. You certainly are a wealth of

> knowledge. I enjoy reading your posts.

>

> I do get more than worried though when people choose to not vaccinate

> their

> children due to what it " might " do to them. I mean NO vaccinations.

> Within two

> years I worked with three children of different families who were never

> vaccinated for anything for that very reason. That not only put them at

> risk, it

> also was risking the health of others who came into contact with them,

> including two medically fragile students. The interesting fact though is

> that all

> three children, from different families, were diagnosed with severe forms

> of

> Autism. No vaccinations is scary stuff.

>

> I would like to read up on the California statistics. I am wondering how

> they qualify autism. The department of education and the department of

> mental

> health has statistics on Autism Spectrum Disorders which include Pervasive

> Development Disorders-Not Otherwise Specified (PDD-NOS), Aspergers and

> other rare

> disorders.

>

> We all understand the dramatic increase in numbers is something to be

> aware

> of. As far as I have seen there been no medically proven or documented

> link

> specifically to mercury in vaccines. That doesn't mean it isn't one of

> the

> causes. I believe more research needs to be done. And gosh, there's more

> junk

> going into our bodies than ever before. Ugh. Societies advances.

>

> I am glad you shared that parents need to be aware of what is in things

> they

> are putting into their children's bodies including the vaccine and

> mercury.

> Somehow there must be something done to allow parents to have the

> knowledge of

> the what and the why and that they have the right to say no to it and THEN

> choose the mercury free version. You are so right in that there are many

> unanswered questions. Oh how we all must support the research to

> investigate this

> further. Yet I have to say the parents of children who have autism are

> becomming

> a huge political voice. That'll move mountains.

>

> I guess my biggest point in all of this is that the diagnosis of our

> children

> having Autism is often quite wrong. I mean blatantly wrong. In my opinion

> that is harmful to the child.

>

> Think of our children and then think of the indicators for Autism. They

> include:

>

> Does not babble or make meaningful gestures by age of 1

> Does not speak one word by 16 months

> Poor eye contact

> Doesn't smile

> Seems to be hearing impaired.

>

> How many of our children fit that bill!?! I would venture to say 99% of

> them. But there's more. Check this out. It is some of the traits of

> Autism.

> They are:

>

> Insistence on sameness; resistance to change

> Difficulty in expressing needs, using gestures or pointing instead of

> words

> Repeating words or phrases in place of normal, responsive language

> Laughing (and/or crying) for no apparent reason showing distress for

> reasons

> not apparent to others

> Preference to being alone; aloof manner

> Tantrums

> Difficulty in mixing with others

> Not wanting to cuddle or be cuddled

> Little or no eye contact

> Unresponsive to normal teaching methods

> Sustained odd play

> Spinning objects

> Obsessive attachment to objects

> Apparent over-sensitivity or under-sensitivity to pain

> No real fears of danger

> Noticeable physical over-activity or extreme under-activity

> Uneven gross/fine motor skills

> Non responsive to verbal cues; acts as if deaf, although hearing tests in

> normal range.

>

> I don't know about others but with that Patty would have been identified

> as

> Autistic. She has CHARGE which is a multisensory disability and not

> autistic

> in nature. That's my big band wagon. CHARGE is not Autism. We must be

> very

> careful of having an autism label on our children. There are minute

> changes

> for education but the minute things can end up as huge later on. Does

> that

> mean children who have CHARGE can't have autism? No. But it sure as heck

> isn't

> the first label our children should ever have even if it gets them some

> sort

> of service within the educational system. It's just not " good enough. "

> We all

> should be very careful of that deep black hole that is called labeling.

>

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>

[Guest guest]

Dear ,

We know knowledge is power. I'vd worked the subject of vaccines into every

conversation I've had with any perspective Mom I know. Not with an opinion,

just the question " have you thought about what you want to do, are you

familiar with the available information? "

Did you tell me, or did I read it-that even flu vaccines contain suspect

ingredients/preservatives.

We need to exercise our rights to make informed decisions every time a

situation allows it, and in the case of vaccines, Mom's need to have formulated

their decisions very early on.

I understand what you're saying, I think, (though not what you're feeling

necessarily) about people's reaction to autism. But I believe its fear-based,

not disdain. People have an idea, and its an overwhelming picture that comes

to mind.(probably from tv). They (we) (me) don't understand degrees, and

don't understand what it really means to the child or the family. It's not

unlike what we went through twenty odd years ago when we both had medically

complicated children to introduce into the world when the sight of a trach and

g-tube etc. were even more shocking than today. People know its complicated

and

difficult, and on top of CHARGE? Both those who have a smattering of

knowledge, and then those who have no clue, find it so much to process in the

time

of one breath-that nothing comes out of their mouths.

Please forgive us our lack of response. We need you, and we benefit mightily

from all your experience, and all the dedicated contributions you've made to

the CHARGE organization,

the list, the parents.

Thanks ,

in Ma. ( 21 yrs)

[Guest guest]

,

Your post is very thoughtful and thought provoking especially in light of

the recent posts about behaviors that are much more severe than are usually

mentioned here. I think your comment about autism is spot-on‹some of our

CHARGE kids do have that additional diagnosis in addition to their sensory

issues‹it is separate and real for them. The fact that some kids are

misdiagnosed leads many to think that our kids could never have these issues

because of their sensory issues; we know this is not true for some of them.

The same is true (and my particular bugaboo) of the diagnosis of

intellectual impairment (Mass. terminolgy for kids over 9 who continue to

have learning issues) or mental retardation or whatever one wants to call

it‹it exists. The kids I work with tend to be the kids who have the most

severe issues and I see these things every day. Like you, it can be

difficult to read posts that talk of the most exciting things‹speech devel.,

successful toilet training at 4, going to public school and being above

average. Don¹t get me wrong I LOVE these posts and revel in and burst with

pride with every success made, but there is another side and I think the

discussions lately about the tremendous behaviors some families live with,

have opened another window of understanding.

It is often difficult for me to post around these issues because I know that

there is great sensitivity‹and there should be‹around what I may want to

say. Not being a parent can be a detriment!! For some I could be lumped

into the ³Those Professionals² category. I also know, for the people who

know me, they know how very much I care about this group as a whole and am

usually very cautious in my responses. My goal is to learn and use the

information I get here which helps me daily in all my interactions with

parents and kids.

I think I have lost my train of thought so I will stop now. I hope I have

not offended; my intention was to agree!!

pam

[Guest guest]

Dear Pam,

I would never group you into a category that was in any way derogatory!

Your comments and the time you take to support many on the list are

sincerely appreciated.

Thank you for your thoughts. Have a lovely weekend.

:-)

Re: Autism spectrum disorders

,

Your post is very thoughtful and thought provoking especially in light of

the recent posts about behaviors that are much more severe than are usually

mentioned here. I think your comment about autism is spot-on CHARGE kids do

have that additional diagnosis in addition to their sensory

issues misdiagnosed leads many to think that our kids could never have these

issues

because of their sensory issues; we know this is not true for some of them.

The same is true (and my particular bugaboo) of the diagnosis of

intellectual impairment (Mass. terminolgy for kids over 9 who continue to

have learning issues) or mental retardation or whatever one wants to call

it severe issues and I see these things every day. Like you, it can be

difficult to read posts that talk of the most exciting things successful

toilet training at 4, going to public school and being above

average. Don¹t get me wrong I LOVE these posts and revel in and burst with

pride with every success made, but there is another side and I think the

discussions lately about the tremendous behaviors some families live with,

have opened another window of understanding.

It is often difficult for me to post around these issues because I know that

there is great sensitivity say. Not being a parent can be a detriment!!

For some I could be lumped

into the ³Those Professionals² category. I also know, for the people who

know me, they know how very much I care about this group as a whole and am

usually very cautious in my responses. My goal is to learn and use the

information I get here which helps me daily in all my interactions with

parents and kids.

I think I have lost my train of thought so I will stop now. I hope I have

not offended; my intention was to agree!!

pam

[Guest guest]

pam no one would put you in any roup except maybe one of the best

professilnals group thats wher ei put you your up there with tim and david

brown and many others love you ellen

>

> Dear Pam,

>

> I would never group you into a category that was in any way derogatory!

> Your comments and the time you take to support many on the list are

> sincerely appreciated.

>

> Thank you for your thoughts. Have a lovely weekend.

>

> :-)

>

> Re: Autism spectrum disorders

>

> ,

> Your post is very thoughtful and thought provoking especially in light of

> the recent posts about behaviors that are much more severe than are

> usually

> mentioned here. I think your comment about autism is spot-on CHARGE kids

> do

> have that additional diagnosis in addition to their sensory

> issues misdiagnosed leads many to think that our kids could never have

> these

>

> issues

> because of their sensory issues; we know this is not true for some of

> them.

> The same is true (and my particular bugaboo) of the diagnosis of

> intellectual impairment (Mass. terminolgy for kids over 9 who continue to

> have learning issues) or mental retardation or whatever one wants to call

> it severe issues and I see these things every day. Like you, it can be

> difficult to read posts that talk of the most exciting things successful

>

> toilet training at 4, going to public school and being above

> average. Don¹t get me wrong I LOVE these posts and revel in and burst with

> pride with every success made, but there is another side and I think the

> discussions lately about the tremendous behaviors some families live with,

> have opened another window of understanding.

>

> It is often difficult for me to post around these issues because I know

> that

> there is great sensitivity say. Not being a parent can be a detriment!!

>

> For some I could be lumped

> into the ³Those Professionals² category. I also know, for the people who

> know me, they know how very much I care about this group as a whole and am

> usually very cautious in my responses. My goal is to learn and use the

> information I get here which helps me daily in all my interactions with

> parents and kids.

>

> I think I have lost my train of thought so I will stop now. I hope I have

> not offended; my intention was to agree!!

> pam

>

>