Re: recent article SIGNS OF AUTISM (?!!)

[Guest guest]

Hi ,

Hope all is well. I wanted to let you know that my e-mail addressed has

changed to:

marcyphilips@...

and I wanted to ask you how can it be updated on the New York City apraxia

group site listing that you made up. I have people e-mail me every once in a

while and I want to still keep in touch with them. I recently spent about an

hour on the phone with Donna Siemazsko and, as a result, her son is going to

start speech therapy with the same therapist that Becca goes to. Her other

therapist didn't do any oral motor exercises and didn't know PROMPT -- so she's

going from the ridiculous to the sublime (as you can tell I love Becca's

therapist)....Anyway, let me know if there's a problem changing the e-mail

address --

I'm only keeping the aol address for a couple of more weeks. Also can you

cahnge the address on the mass e-mails you send out??? Thanks so much.

Enjoy the rest of your summer!!!

Marcy Philips

[Guest guest]

and everyone....

The " autistic spectrum disorder " umbrella is so widely used because it covers so

many things. Remember, the way many look at this, .. if it looks like a duck

and it quacks like a duck, then its a duck....WRONG. Jordan

babbled....incessantly. Jordan POINTED...because I taught him to sign....and

Jordan has ADHD, because he got it from ME, lol....so when the ped put all those

together. he just said " he'll talk late because the brain is going too fast for

the mouth to catch up. " MADE SENSE...still does. So when he talked like Cousin

It...I figured it would all work itself out, because my middle child stuttered

(also ADHD.) It was when he couldn't blow bubbles, etc., that i started

screaming at him that it was something else.

There is such a lack of knowledge, that it's scary. Parents rely on docs..and

docs are so overworked and overburdened today with healthcare as it is. The

system, unfortunately will fail us if we aren't proactive and don't jump up and

work, in many instances, on our own, for our children.

, you've done a wonderful thing with this book, this group, and your

organization. I've seen such a bunch of exceptional moms here....I've done a

lot of work over the years with developmentally delayed children...the moms in

this group are so wise to be INVOLVED and come here for advice. Kudos to all of

you. May God continue to bless all of you and your children. , you're

truly a godsend.

Karyn

[ ] recent article " SIGNS OF AUTISM " (?!!)

Signs of autism

July 27, 2003

SIGNS OF AUTISM

Autism is a complex developmental disability that typically appears

during the first three years of life. There are no medical tests for

diagnosing autism but the National Institute of Child Health and

Human Development lists these five behaviors in children that signal

further evaluation is warranted:

Does not babble or coo by 12 months.

Does not gesture (point, wave, grasp) by 12 months.

Does not say single words by 16 months.

Does not say two-word phrases on his or her own by 24 months.

Has any loss of any language or social skill at any age.

Such behaviors do not mean a child is autistic but signal a need for

further evaluation by a neurologist, psychologist, developmental

pediatrician, speech/language therapist, learning consultant, or

other professionals knowledgeable about autism.

Source: Autism Society of America

http://www.pressdemocrat.com/local/news/27autismbox_a7empirea.html

Excuse me? Did they pull and then distort that from The Late Talker

book? Tanner had all of these signs listed above -except the second -he

pointed

and used extensive sign -and he was, like many children here not

autistic -but apraxic. How many other apraxic and other speech and

language impaired children in this group fit the same warning signs

for autism listed above?

So now the classic signs of a late talker, or a speech and language

delay -or a possible speech and language disorder are all signs of

autism? No wonder the many more children with speech and language

impairments who are not autistic do not have a voice -the " symptoms "

of their disorder are viewed as signs of autism.

There is -again -only a 4 fold rise in autism while there was a 30

fold rise in speech and language disorders in the same 10 year

period. So this is quite sad and will raise the level of the amount

of misdiagnosed children even higher.

Why not list something communication impaired children really need -

the warning signs of each type of speech and language impairments -

so we know that they really know the differences. As parents who have more

than one communication impaired

child in our group know very well -they are not all the same -and

they require different therapies.

Jeannie Buesser's one son is apraxic/ADHD and her youngest is

PDD/autistic for example. Jeannie -good thing you are working on a

book now!

=====

[Guest guest]

Hi ,

Mel had all the signs except for the last. She could not point or

gesture for the longest time due to her severe global apraxia. Only

now being in proper therapy for over a year can she point with more

accuracy. The " Signs of Autism " really upsets me due to the fact that

so many children are going to keep getting misdiagnosed and be treated

like Mel was for so many years.

This last month has been a difficult one due to helping the attorney

write the federal complaint against our school district, some

individuals, and our Intermediate Unit. Having to remember these

negative experiences has been a challenge. The sadness that my

husband and I felt all of those years just came back so quickly. The

relief of this unfortunate situation is that we finally found the

answers and have Mel is a wonderful therapy program. It still makes me

think of all those who are like Mel and still misdiagnosed.

Our federal complaint has been filed in the Phila Federal Court and now

we just wait to receive the school districts, a few individuals, and

the Intermediate Unit response to our complaint. I truly hope our

federal complaint gets some local attention so it may help a child from

being misdiagnosed. If it just even helps one child, then we feel we

would have made a difference. Of course, we hope it helps many

children.

Robin

On Sunday, Jul 27, 2003, at 11:32 US/Eastern, kiddietalk wrote:

> Signs of autism

>

> July 27, 2003

>

>

>

> SIGNS OF AUTISM

>

>

> Autism is a complex developmental disability that typically appears

> during the first three years of life. There are no medical tests for

> diagnosing autism but the National Institute of Child Health and

> Human Development lists these five behaviors in children that signal

> further evaluation is warranted:

>

>

> Does not babble or coo by 12 months.

>

>

> Does not gesture (point, wave, grasp) by 12 months.

>

>

> Does not say single words by 16 months.

>

>

> Does not say two-word phrases on his or her own by 24 months.

>

>

> Has any loss of any language or social skill at any age.

>

>

> Such behaviors do not mean a child is autistic but signal a need for

> further evaluation by a neurologist, psychologist, developmental

> pediatrician, speech/language therapist, learning consultant, or

> other professionals knowledgeable about autism.

>

>

> Source: Autism Society of America

>

> http://www.pressdemocrat.com/local/news/27autismbox_a7empirea.html

>

>

>

> Excuse me? Did they pull and then distort that from The Late Talker

> book? Tanner had all of these signs listed above -except the second

> -he pointed

> and used extensive sign -and he was, like many children here not

> autistic -but apraxic. How many other apraxic and other speech and

> language impaired children in this group fit the same warning signs

> for autism listed above?

>

> So now the classic signs of a late talker, or a speech and language

> delay -or a possible speech and language disorder are all signs of

> autism? No wonder the many more children with speech and language

> impairments who are not autistic do not have a voice -the " symptoms "

> of their disorder are viewed as signs of autism.

>

> There is -again -only a 4 fold rise in autism while there was a 30

> fold rise in speech and language disorders in the same 10 year

> period. So this is quite sad and will raise the level of the amount

> of misdiagnosed children even higher.

>

> Why not list something communication impaired children really need -

> the warning signs of each type of speech and language impairments -

> so we know that they really know the differences. As parents who have

> more than one communication impaired

> child in our group know very well -they are not all the same -and

> they require different therapies.

>

> Jeannie Buesser's one son is apraxic/ADHD and her youngest is

> PDD/autistic for example. Jeannie -good thing you are working on a

> book now!

>

> =====

>

[Guest guest]

Philadelphia? Robin, where are you, Im in Bucks County and had the same issue

with Jordan being dx'd by them as autistic. Just curious.....

Karyn

Re: [ ] recent article " SIGNS OF AUTISM " (?!!)

Hi ,

Mel had all the signs except for the last. She could not point or

gesture for the longest time due to her severe global apraxia. Only

now being in proper therapy for over a year can she point with more

accuracy. The " Signs of Autism " really upsets me due to the fact that

so many children are going to keep getting misdiagnosed and be treated

like Mel was for so many years.

This last month has been a difficult one due to helping the attorney

write the federal complaint against our school district, some

individuals, and our Intermediate Unit. Having to remember these

negative experiences has been a challenge. The sadness that my

husband and I felt all of those years just came back so quickly. The

relief of this unfortunate situation is that we finally found the

answers and have Mel is a wonderful therapy program. It still makes me

think of all those who are like Mel and still misdiagnosed.

Our federal complaint has been filed in the Phila Federal Court and now

we just wait to receive the school districts, a few individuals, and

the Intermediate Unit response to our complaint. I truly hope our

federal complaint gets some local attention so it may help a child from

being misdiagnosed. If it just even helps one child, then we feel we

would have made a difference. Of course, we hope it helps many

children.

Robin

On Sunday, Jul 27, 2003, at 11:32 US/Eastern, kiddietalk wrote:

> Signs of autism

>

> July 27, 2003

>

>

>

> SIGNS OF AUTISM

>

>

> Autism is a complex developmental disability that typically appears

> during the first three years of life. There are no medical tests for

> diagnosing autism but the National Institute of Child Health and

> Human Development lists these five behaviors in children that signal

> further evaluation is warranted:

>

>

> Does not babble or coo by 12 months.

>

>

> Does not gesture (point, wave, grasp) by 12 months.

>

>

> Does not say single words by 16 months.

>

>

> Does not say two-word phrases on his or her own by 24 months.

>

>

> Has any loss of any language or social skill at any age.

>

>

> Such behaviors do not mean a child is autistic but signal a need for

> further evaluation by a neurologist, psychologist, developmental

> pediatrician, speech/language therapist, learning consultant, or

> other professionals knowledgeable about autism.

>

>

> Source: Autism Society of America

>

> http://www.pressdemocrat.com/local/news/27autismbox_a7empirea.html

>

>

>

> Excuse me? Did they pull and then distort that from The Late Talker

> book? Tanner had all of these signs listed above -except the second

> -he pointed

> and used extensive sign -and he was, like many children here not

> autistic -but apraxic. How many other apraxic and other speech and

> language impaired children in this group fit the same warning signs

> for autism listed above?

>

> So now the classic signs of a late talker, or a speech and language

> delay -or a possible speech and language disorder are all signs of

> autism? No wonder the many more children with speech and language

> impairments who are not autistic do not have a voice -the " symptoms "

> of their disorder are viewed as signs of autism.

>

> There is -again -only a 4 fold rise in autism while there was a 30

> fold rise in speech and language disorders in the same 10 year

> period. So this is quite sad and will raise the level of the amount

> of misdiagnosed children even higher.

>

> Why not list something communication impaired children really need -

> the warning signs of each type of speech and language impairments -

> so we know that they really know the differences. As parents who have

> more than one communication impaired

> child in our group know very well -they are not all the same -and

> they require different therapies.

>

> Jeannie Buesser's one son is apraxic/ADHD and her youngest is

> PDD/autistic for example. Jeannie -good thing you are working on a

> book now!

>

> =====

>

[Guest guest]

Thanks ,

Just a note the book is still pending, nothing yet. It is really a

shame that this autism article is trying to blanket many speech

disorders in this. I know that it may seem like a daunting task. But

I know that if we keep trying someone will listen, and help correct

this problem, so the awareness and outreach will be out there for the

children of the future. jeanne buesser

> SIGNS OF AUTISM

>

>

> Does not babble or coo by 12 months.

>

>

> Does not gesture (point, wave, grasp) by 12 months.

>

>

> Does not say single words by 16 months.

>

>

> Does not say two-word phrases on his or her own by 24 months.

>

>

> Has any loss of any language or social skill at any age.

http://www.pressdemocrat.com/local/news/27autismbox_a7empirea.html

>

> Why not list something communication impaired children really need -

> the warning signs of each type of speech and language impairments -

> so we know that they really know the differences. As parents who

have more than one communication impaired

> child in our group know very well -they are not all the same -and

> they require different therapies.

>

> Jeannie Buesser's one son is apraxic/ADHD and her youngest is

> PDD/autistic for example. Jeannie -good thing you are working on a

> book now!

>

> =====

>

[Guest guest]

Yep, Robin, I can identify with you yet again. My son Micah also had all

these " symptoms " due to his global apraxia, except for the last....he didn't

actually lose skills. He has learned many things and made the most progress

when he was getting intense and consistent therapy. he has been out of

speech thearapy now for five months (he is eight ) and I think his speech is

losing clarity. I am trying to find an appropriate therapist that will take

medicaid now. Micah has been evaluated for autistic spectrum disorder FOUR

times. Each time thanks to professionals who really know there stuff it has

been ruled out.....however, if we had had to rely on the " professionals " who

recommended the evals, wouldn't we be in trouble? I am praying that your

suit goes a LONG WAY in increasing awareness of how severe global apraxia

can be. I applaud you going through all those painful memories to try and

help others. Keep on keeping on! Carol (mom to two wonderful boys)

Message: 8

Date: Sun, 27 Jul 2003 16:15:37 -0400

From: Robin Ketchem <ketchem@...>

Subject: Re: recent article " SIGNS OF AUTISM " (?!!)

Hi ,

Mel had all the signs except for the last. She could not point or

gesture for the longest time due to her severe global apraxia. Only

now being in proper therapy for over a year can she point with more

accuracy. The " Signs of Autism " really upsets me due to the fact that

so many children are going to keep getting misdiagnosed and be treated

like Mel was for so many years.

This last month has been a difficult one due to helping the attorney

write the federal complaint against our school district, some

individuals, and our Intermediate Unit. Having to remember these

negative experiences has been a challenge. The sadness that my

husband and I felt all of those years just came back so quickly. The

relief of this unfortunate situation is that we finally found the

answers and have Mel is a wonderful therapy program. It still makes me

think of all those who are like Mel and still misdiagnosed.

Our federal complaint has been filed in the Phila Federal Court and now

we just wait to receive the school districts, a few individuals, and

the Intermediate Unit response to our complaint. I truly hope our

federal complaint gets some local attention so it may help a child from

being misdiagnosed. If it just even helps one child, then we feel we

would have made a difference. Of course, we hope it helps many

children.

Robin

[Guest guest]

Hi ,

We live in Ephrata PA, Lancaster County. Unfortunately they still are

diagnosing with autism and refuse to believe that she has

severe global apraxia. Mel has made some nice gains since she has had

the proper therapy. The school district and the IU still refuse to

accept even though we have shared each and every report with them since

finding out about the apraxia.

Robin

On Sunday, Jul 27, 2003, at 19:06 US/Eastern, Karyn wrote:

> Philadelphia? Robin, where are you, Im in Bucks County and had the

> same issue with Jordan being dx'd by them as autistic. Just

> curious.....

> Karyn

>

[Guest guest]

The only sign my son had was that he did not say any two word phrases by 24

months of age. Something else that throws more confusion into the mix...that

whole head study that came out last week or the week before doesn't fit my son

either. His head circumference has always consistently and steadily been in the

75th percentile. One other thing, I've spoken with many, many, many mothers of

autistic children on-line. NONE of them have had the success with Pro-EFA that

we've had. It's examples like this that keep me wondering... KIM

Re: [ ] recent article " SIGNS OF AUTISM " (?!!)

Hi ,

Mel had all the signs except for the last. She could not point or

gesture for the longest time due to her severe global apraxia. Only

now being in proper therapy for over a year can she point with more

accuracy. The " Signs of Autism " really upsets me due to the fact that

so many children are going to keep getting misdiagnosed and be treated

like Mel was for so many years.

This last month has been a difficult one due to helping the attorney

write the federal complaint against our school district, some

individuals, and our Intermediate Unit. Having to remember these

negative experiences has been a challenge. The sadness that my

husband and I felt all of those years just came back so quickly. The

relief of this unfortunate situation is that we finally found the

answers and have Mel is a wonderful therapy program. It still makes me

think of all those who are like Mel and still misdiagnosed.

Our federal complaint has been filed in the Phila Federal Court and now

we just wait to receive the school districts, a few individuals, and

the Intermediate Unit response to our complaint. I truly hope our

federal complaint gets some local attention so it may help a child from

being misdiagnosed. If it just even helps one child, then we feel we

would have made a difference. Of course, we hope it helps many

children.

Robin

[Guest guest]

" NONE of them have had the success with

Pro-EFA that we've had. It's examples like this that keep me

wondering... "

None is a pretty strong statement. How many exactly answered this

and was it the ProEFA they used or another type of fish oil (like a

pure Omega 3 such as flax or cod liver oil which in our feedback we

also saw little or no change -needs to be the right formula, dosage)

Or just by chance -were these parents of children with 'severe'

autism? That's the only group

of autistic children that has had overall little to no change on the EFAs -and

we have a large group. There are actually quite a few children with (typically

not severe)

autism and PDD that have had moderate to dramatic surges on the

EFAs -which is why Xue Ming MD PhD of University of Medicine and

Dentistry in New Jersey who runs the Autism Center has in her article on autism:

" Doctors also prescribed essential fatty acids, a common over-the-counter

supplement. Soon after, began saying his first words "

http://www.vaccinationnews.com/DailyNews/December2002/JerseyTakesLead29.htm

There has been a large rise in communication impairments (4 fold in

autism to 30 fold in speech and language in the past 10 years) so

again I suspect for those EFAs do not work for, the minority -those are the

children who would have been in the rare percentage before the rise,

where the ones who respond to EFAs, the majority, are the children who are part

of this

apparent epidemic much of which is being called autism (but which is

also apraxia)

We may find out it's a type of virus -or from an environmental toxin -but either

way one day we'll learn how EFAs play into the cure.

=====

[Guest guest]

The parents I've communicated with usually tell me their children have no words

at all. I'll tell how my son had 80 words when he started Pro-EFA in April and

today has 325+ and speaks in 3-5 word phrases and they'll reply that their child

remains non-verbal or has failed to gain any additional language skills. And

you're right, few (if any) of the ones I've communicated with were using Pro-EFA

if I recall correctly, it is usually something else. I mistakenly used the brand

name Pro-EFA when discussing the product in general (sort of like we all say

Q-tip) to cover all fish oil. My fault - I'm sleepy - sorry. KIM

[Guest guest]

....

This reminds me of the " ritalin " answer with ADHD kids...if a stimulant works,

then it's fairly comfortable to say you've hit the target.

COUNT ME IN....

....<sigh> and sign me

ONE FREAKED OUT MOM

~Karyn

[ ] Re: recent article " SIGNS OF AUTISM " (?!!)

" NONE of them have had the success with

Pro-EFA that we've had. It's examples like this that keep me

wondering... "

None is a pretty strong statement. How many exactly answered this

and was it the ProEFA they used or another type of fish oil (like a

pure Omega 3 such as flax or cod liver oil which in our feedback we

also saw little or no change -needs to be the right formula, dosage)

[Guest guest]

So, My 12 year old non-verbal " autistic " son may not be autistic at all?

I am sorry, but I don't get to the list much, if at all anymore, and I am not

following the conversations. Between computer problems since I moved back

here...to the sheer lack of time and/or energy...and not to mention mymercury

poisoned brain and lack of concentration, focus, memory...I am just barely able

to function at all.

Can someone explain about the differences between " autism " and apraxia?

What are the best treatments?

Thnaks, Lindy

lindyholc@...,readjoshua19@...

--------------------------------------------------------------------------------\

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

kiddietalk <kiddietalk@...> wrote:

Signs of autism

July 27, 2003

SIGNS OF AUTISM

Autism is a complex developmental disability that typically appears

during the first three years of life. There are no medical tests for

diagnosing autism but the National Institute of Child Health and

Human Development lists these five behaviors in children that signal

further evaluation is warranted:

Does not babble or coo by 12 months.

Does not gesture (point, wave, grasp) by 12 months.

Does not say single words by 16 months.

Does not say two-word phrases on his or her own by 24 months.

Has any loss of any language or social skill at any age.

Such behaviors do not mean a child is autistic but signal a need for

further evaluation by a neurologist, psychologist, developmental

pediatrician, speech/language therapist, learning consultant, or

other professionals knowledgeable about autism.

Source: Autism Society of America

http://www.pressdemocrat.com/local/news/27autismbox_a7empirea.html