Re: Classifcation-somthing to think about re: Walters

September 27, 2007

My understanding is that Pervasive Developmental Disorders (PDD) is the umbrella

that autism falls under as well as aspergers. I have always understood from

information from many sources, that PDD-NOS was really a diagnosis for those

individuals that did not fit directly into any specific sub catagory under the

PDD umbrella. So that being said, it makes the diagnosis one that can be

anywhere from mild to severe just like autism. I hear a lot of parents say the

same thing happens with the aspergers diagnosis also, but it can also be severe.

My son also communicated through his actions when he felt bad and did not show

any symptoms often. I do really understand that one.

JOSH STONE wrote:

We have to make sure though, that everyone realizes that just because

each of our experiences are very different they are all extremely real...and

that just because a child carries a PDD-NOS diagnosis verses a Severe Autism

diagnosis that the needs of the child with PDD-NOS can be just as significant

and intense as a more severe diagnosis. It has been my experience that a PDD-NOS

label somehow negates the fact that he has the same issues. My son is verbal...

so he is expected to express himself appropriately etc...well my son can tell

you all about monster trucks, but cannot tell you with words that he has an ear

infection. Its a couple days of tantrums and aggressive behavior with no

apparent reason before we realize what's going on...sometimes it takes the ear

to rupture (he never runs fever or has any other signs) Because PDD-NOS is

misunderstood as just being a less severe form of autism it is harder to get

services. I actually had a developmental specialist

tell me " well, he's just PDD and if we did ______ for every PDD child... When we

know that there can be very severe issues regarding behavior, sensory issues

etc. While I agree that there should be more research done in the area of sub

categories.(my son doesn't fit neatly in any one) ..we need to make sure that

schools, professionals, and pediatrics understand all children on the spectrum

and their families deal with the same stresses and have similar needs.

Tonya Hettler wrote: You go girl! The differences in the

children with the same classification

is something that has bugged me for a long time. I agree that our children

would have a better chance at education and treatment if the spectrum was

further/better defined.

Tonya

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of Chatmom

Sent: Wednesday, September 26, 2007 7:59 PM

To: Texas-Autism-Advocacy

Subject: RE: Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

What's different about the kids who get seizures versus those who don't?

What's different about the kids who respond to the GFCF versus the

Strict Carbohydrate Diet versu the Body Ecology Diet versus those

who respond to no diet?

etc.

What's different about the kids who can produce sounds versus

those who can't?

What's different about those with constipation versus those who don't

have it?

What's different about those who have sleep issues versus those who

don't?

There are real physical symptoms rather than behavior measures that

researchers can look at now, but so far, sorting out the subgroups

has been given a low priority on the autism matrix.

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

And the policy makers, who do want to help, get very, very confused.

S.

Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

That is exactly what it means... but it is often misconstrude by professionals.

which is really sad... especially for our little guys.

Lori and Weldon Glidden wrote: My understanding

is that Pervasive Developmental Disorders (PDD) is the umbrella that autism

falls under as well as aspergers. I have always understood from information from

many sources, that PDD-NOS was really a diagnosis for those individuals that did

not fit directly into any specific sub catagory under the PDD umbrella. So that

being said, it makes the diagnosis one that can be anywhere from mild to severe

just like autism. I hear a lot of parents say the same thing happens with the

aspergers diagnosis also, but it can also be severe.

My son also communicated through his actions when he felt bad and did not show

any symptoms often. I do really understand that one.

JOSH STONE wrote:

We have to make sure though, that everyone realizes that just because each of

our experiences are very different they are all extremely real...and that just

because a child carries a PDD-NOS diagnosis verses a Severe Autism diagnosis

that the needs of the child with PDD-NOS can be just as significant and intense

as a more severe diagnosis. It has been my experience that a PDD-NOS label

somehow negates the fact that he has the same issues. My son is verbal... so he

is expected to express himself appropriately etc...well my son can tell you all

about monster trucks, but cannot tell you with words that he has an ear

infection. Its a couple days of tantrums and aggressive behavior with no

apparent reason before we realize what's going on...sometimes it takes the ear

to rupture (he never runs fever or has any other signs) Because PDD-NOS is

misunderstood as just being a less severe form of autism it is harder to get

services. I actually had a developmental specialist

tell me " well, he's just PDD and if we did ______ for every PDD child... When we

know that there can be very severe issues regarding behavior, sensory issues

etc. While I agree that there should be more research done in the area of sub

categories.(my son doesn't fit neatly in any one) ..we need to make sure that

schools, professionals, and pediatrics understand all children on the spectrum

and their families deal with the same stresses and have similar needs.

Tonya Hettler wrote: You go girl! The differences in the

children with the same classification

is something that has bugged me for a long time. I agree that our children

would have a better chance at education and treatment if the spectrum was

further/better defined.

Tonya

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of Chatmom

Sent: Wednesday, September 26, 2007 7:59 PM

To: Texas-Autism-Advocacy

Subject: RE: Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

What's different about the kids who get seizures versus those who don't?

What's different about the kids who respond to the GFCF versus the

Strict Carbohydrate Diet versu the Body Ecology Diet versus those

who respond to no diet?

etc.

What's different about the kids who can produce sounds versus

those who can't?

What's different about those with constipation versus those who don't

have it?

What's different about those who have sleep issues versus those who

don't?

There are real physical symptoms rather than behavior measures that

researchers can look at now, but so far, sorting out the subgroups

has been given a low priority on the autism matrix.

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

And the policy makers, who do want to help, get very, very confused.

S.

Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

Well, all I can say is that those kind of people show how ignorant they

truly are

because some of the most severly affected children I know carry the label of

PDD-NOS. And meanwhile, my son, who got the big " A " Dx is fully verbal and

doing well with the general education curriculum in 3rd grade.

There is some kind of misperception that PDD-NOS is like " autism

light " . " Oh, we can just call it PDD-NOS because THAT'S not as bad as

AUTISM. " What a lot of horse manure and what a huge disservice to parents

and persons affected.

I'm guessing that developmental " specialist " doesn't actually diagnosis

kiddos

because then they would know that the only difference between autism and

PDD-NOS can be one check mark in one area of need. Just one.

I always recommend that people with kids who have pdd-nos NOT take it

lightly

and hit it just as hard as kiddos with the big 'A'.

Not sure what to do with that level of ignorance other that kick it in the

backside.

S.

RE: Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

. . . . . . . . .

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

.

September 27, 2007

Likewise, my daughter is very verbal. She was originally diagnosed as PDD-NOS

at 2-1/2 years of age, then recently, at 8 years of age, reassigned the ASD

label. Has she regressed? Quite the contrary. But I always used the word

" autistic " to describe her. As far as I'm concerned, PDD-NOS = autism. I've

met people whose children are CLEARLY, severely autistic, and when I say " my

daughter has autism, too " , they insist their child is not autistic- they have

PDD. Is this denial?

RE: [Texas-Autism- Advocacy] Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

.. . . . . . . . .

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

..

September 27, 2007

Yes, I would call this denial.

My son has a pdd-nos dx. He is considered very high-functioning.

BUT - even so, we are to prepare for him to always be dependent on us

some way. Just because he can speak, and appear NT in many ways - he

still has some pretty significant deficits in other areas.

Impulsivity, judgement, sensory, social, etc.... I think in the long

run it's going to be the impulsiveness, lack of judgement ability,

and his social skills that are going to give him the most

difficulty.

I have been told by all of our dr's that PDD-NOS is Autism, these

dr's include some of the known experts in this field. I've heard

many " rumors " that classifications are going to be changed from

Aspergers, PDD-NOS, Autism, etc... to plain old Autism Spectrum

Disorder. There seems to be so much confusion.

I'm also beginning to see a lot of division between parents on

support boards. I belong to one other board and this topic came up

the other day. It seems sometimes that parents with severe and low-

functioning children were resenting those of us with high-functioning

kids. I see us all in the same boat in some way. Our days may not

look exactly the same, be we are all working with the same

challenges, the same ignorance of the public, difficulties with

providers, etc...

September 27, 2007

I think PDD-nos is the term doctor's use for when a

child is young and is hard for them to diagnose where

the child is within the spectrum.

My psyquiatrist/Neurologyst, told me Andree ( my

oldest ) was PDD nos and this last year he change the

diagonse to Classis autism/Adhd/Add.

And with my 2nd one it was inmediate classic severe

autism then later on he had classic severe

autism/depression/add .

And then my number ( the youngest) he told me that for

the time being he was going to diagnose him with PDD

nos also cause he was still 2 in a half and it was

hard to see how he was going to develop later.

I believe that no matter what, PDD nos is just as

severe as any other diagnose within the spectrum,

there is no less or more is just different symptoms

and reactions.

--- Aliza Ratterree wrote:

> Likewise, my daughter is very verbal. She was

> originally diagnosed as PDD-NOS at 2-1/2 years of

> age, then recently, at 8 years of age, reassigned

> the ASD label. Has she regressed? Quite the

> contrary. But I always used the word " autistic " to

> describe her. As far as I'm concerned, PDD-NOS =

> autism. I've met people whose children are CLEARLY,

> severely autistic, and when I say " my daughter has

> autism, too " , they insist their child is not

> autistic- they have PDD. Is this denial?

>

> RE: [Texas-Autism- Advocacy] Re: Where is

> Barbara Walters Medical

> Degree?

>

> You hit the nail on the head why policy makers are

> getting frustrated

> with the autism community.

>

> Which is why I say that before 1 single cent more

> goes to the great

> genetic snipe hunt, priority for research funding

> MUST be given to

> sorting out the sub-types and determining the

> characteristics of that.

> . . . . . . . . .

> Right now, I just don't think we're comparing apples

> to apples when

> we talk about autism most of the time and so people

> go passionately

> off into different directions with their real, but

> very different

> experience.

>

> .

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

________________________________________________________________________________\

____

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September 27, 2007

Good point, . I have a friend who's son is dx'd as PDD-NOS,

and yes, he's verbal (he will repeat what his mom tells him to but

won't speak of his own volition), but his behavior is

uncontrollable. She can't take him anywhere, and he is physically

violent to her and his younger brother to the point of drawing

blood. My son, who is essentially non-verbal, is very laid back and

easy-going. I can take him pretty much anywhere and don't have to

worry about rigidity or meltdowns. But my son has the " more severe "

dx of autism. I think any lay person simply observing our two

children would assume her son is more severe than mine, simply based

on behavior.

When we got our son dx'd at age 2, the Autism Center where he was

dx'd specifically said they don't give PDD-NOS dx's because they are

misleading. If the child meets the criteria for autism, even on the

mild end, that is the dx they give.

On a side note - I have always had my feathers a little ruffled by

parents who constantly point out that their child has " high

functioning " autism. I can see this being a necessity when talking

to non-autism people who might not realize that there is a spectrum,

but when talking to us autism parents, it sort of seems like bragging

to keep mentioning this - like a need to constantly keep separated

from lower functioning kids.

Just my two cents...

-

Jimmy 10/12/2001

September 27, 2007

You made a good point Josh! The problem we run into is our son is diagnosed

with just Autism, no HFA qualification or anything and is in the mainstream.

When he gets a new teacher each year, we go through the education curve that

just because he looks like the other children and can talk doesn't mean he

functions on the same level as those children. In addition to his classroom

challenges, we have to remind them every year that he can't deliver

messages, let us know about early dismissals, etc. Some years the teachers

get it, others they don't.

Tonya

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of JOSH STONE

Sent: Wednesday, September 26, 2007 11:53 PM

To: Texas-Autism-Advocacy

Subject: Classifcation-somthing to think about re:

Walters

We have to make sure though, that everyone realizes that just because each

of our experiences are very different they are all extremely real...and that

just because a child carries a PDD-NOS diagnosis verses a Severe Autism

diagnosis that the needs of the child with PDD-NOS can be just as

significant and intense as a more severe diagnosis. It has been my

experience that a PDD-NOS label somehow negates the fact that he has the

same issues. My son is verbal... so he is expected to express himself

appropriately etc...well my son can tell you all about monster trucks, but

cannot tell you with words that he has an ear infection. Its a couple days

of tantrums and aggressive behavior with no apparent reason before we

realize what's going on...sometimes it takes the ear to rupture (he never

runs fever or has any other signs) Because PDD-NOS is misunderstood as just

being a less severe form of autism it is harder to get services. I actually

had a developmental specialist

tell me " well, he's just PDD and if we did ______ for every PDD child...

When we know that there can be very severe issues regarding behavior,

sensory issues etc. While I agree that there should be more research done in

the area of sub categories.(my son doesn't fit neatly in any one) ..we need

to make sure that schools, professionals, and pediatrics understand all

children on the spectrum and their families deal with the same stresses and

have similar needs.

Tonya Hettler <txua@... <mailto:txua%40earthlink.net> > wrote: You

go girl! The differences in the children with the same classification

is something that has bugged me for a long time. I agree that our children

would have a better chance at education and treatment if the spectrum was

further/better defined.

Tonya

From: Texas-Autism-Advocacy

<mailto:Texas-Autism-Advocacy%40yahoogroups.com>

[mailto:Texas-Autism-Advocacy

<mailto:Texas-Autism-Advocacy%40yahoogroups.com> ] On Behalf Of Chatmom

Sent: Wednesday, September 26, 2007 7:59 PM

To: Texas-Autism-Advocacy

<mailto:Texas-Autism-Advocacy%40yahoogroups.com>

Subject: RE: Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

What's different about the kids who get seizures versus those who don't?

What's different about the kids who respond to the GFCF versus the

Strict Carbohydrate Diet versu the Body Ecology Diet versus those

who respond to no diet?

etc.

What's different about the kids who can produce sounds versus

those who can't?

What's different about those with constipation versus those who don't

have it?

What's different about those who have sleep issues versus those who

don't?

There are real physical symptoms rather than behavior measures that

researchers can look at now, but so far, sorting out the subgroups

has been given a low priority on the autism matrix.

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

And the policy makers, who do want to help, get very, very confused.

S.

Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

You are right about that, for some reason I can't

take mine anywhere, besides my backyard, for some

reason applenee's, Olive garden or the steak roudhouse

( there are penatus all over the floor) they line them

up not eat them of course and school.

Other than that when I take them other places they are

just soooo uncomfortable, only my youngest can handle

it well.

My other 2 they like to go out but they still feel odd

and they always throw temper tantrums.

They also have this thing about the garage door, where

they start crying as soon is opens or close.

Wich i found a little odd ( they all cry at the same

time)

So basically some reactions are the same and some

other are diferent.

But at the same time, they are very diferent by all

means within their autistic and non autistic

behaviors.

Is amazing to observe all this.

I am just glad that at least they interact with each

other and sort of help me out to pull them off the

spectrum since they are always bothering each other or

playing.

Basicaly the 2 little one's are always together.

The oldest one is the must isolated and spends must of

the time either reading or in the computer, otherwise

he is runing, jumping or finger flapping,and he finds

talking very difficult unless is something he wants or

something he needs.

--- jennifer_flinton wrote:

> Good point, . I have a friend who's son is

> dx'd as PDD-NOS,

> and yes, he's verbal (he will repeat what his mom

> tells him to but

> won't speak of his own volition), but his behavior

> is

> uncontrollable. She can't take him anywhere, and he

> is physically

> violent to her and his younger brother to the point

> of drawing

> blood. My son, who is essentially non-verbal, is

> very laid back and

> easy-going. I can take him pretty much anywhere and

> don't have to

> worry about rigidity or meltdowns. But my son has

> the " more severe "

> dx of autism. I think any lay person simply

> observing our two

> children would assume her son is more severe than

> mine, simply based

> on behavior.

>

> When we got our son dx'd at age 2, the Autism Center

> where he was

> dx'd specifically said they don't give PDD-NOS dx's

> because they are

> misleading. If the child meets the criteria for

> autism, even on the

> mild end, that is the dx they give.

>

> On a side note - I have always had my feathers a

> little ruffled by

> parents who constantly point out that their child

> has " high

> functioning " autism. I can see this being a

> necessity when talking

> to non-autism people who might not realize that

> there is a spectrum,

> but when talking to us autism parents, it sort of

> seems like bragging

> to keep mentioning this - like a need to constantly

> keep separated

> from lower functioning kids.

>

> Just my two cents...

>

> -

>

> Jimmy 10/12/2001

>

________________________________________________________________________________\

____

Catch up on fall's hot new shows on Yahoo! TV. Watch previews, get listings, and

more!

http://tv.yahoo.com/collections/3658

September 27, 2007

Sorry about all the mispelling I was in a rush and

typing tooo fast I meant, peanuts, Applebee's, Steak

house and I didin't meant to repeat so many words at

the same time

--- jackie chalons wrote:

> You are right about that, for some reason I can't

> take mine anywhere, besides my backyard, for some

> reason applenee's, Olive garden or the steak

> roudhouse

> ( there are penatus all over the floor) they line

> them

> up not eat them of course and school.

> Other than that when I take them other places they

> are

> just soooo uncomfortable, only my youngest can

> handle

> it well.

> My other 2 they like to go out but they still feel

> odd

> and they always throw temper tantrums.

> They also have this thing about the garage door,

> where

> they start crying as soon is opens or close.

> Wich i found a little odd ( they all cry at the same

> time)

>

> So basically some reactions are the same and some

> other are diferent.

> But at the same time, they are very diferent by all

> means within their autistic and non autistic

> behaviors.

> Is amazing to observe all this.

> I am just glad that at least they interact with each

> other and sort of help me out to pull them off the

> spectrum since they are always bothering each other

> or

> playing.

> Basicaly the 2 little one's are always together.

> The oldest one is the must isolated and spends must

> of

> the time either reading or in the computer,

> otherwise

> he is runing, jumping or finger flapping,and he

> finds

> talking very difficult unless is something he wants

> or

> something he needs.

>

> --- jennifer_flinton wrote:

>

> > Good point, . I have a friend who's son is

> > dx'd as PDD-NOS,

> > and yes, he's verbal (he will repeat what his mom

> > tells him to but

> > won't speak of his own volition), but his behavior

> > is

> > uncontrollable. She can't take him anywhere, and

> he

> > is physically

> > violent to her and his younger brother to the

> point

> > of drawing

> > blood. My son, who is essentially non-verbal, is

> > very laid back and

> > easy-going. I can take him pretty much anywhere

> and

> > don't have to

> > worry about rigidity or meltdowns. But my son has

> > the " more severe "

> > dx of autism. I think any lay person simply

> > observing our two

> > children would assume her son is more severe than

> > mine, simply based

> > on behavior.

> >

> > When we got our son dx'd at age 2, the Autism

> Center

> > where he was

> > dx'd specifically said they don't give PDD-NOS

> dx's

> > because they are

> > misleading. If the child meets the criteria for

> > autism, even on the

> > mild end, that is the dx they give.

> >

> > On a side note - I have always had my feathers a

> > little ruffled by

> > parents who constantly point out that their child

> > has " high

> > functioning " autism. I can see this being a

> > necessity when talking

> > to non-autism people who might not realize that

> > there is a spectrum,

> > but when talking to us autism parents, it sort of

> > seems like bragging

> > to keep mentioning this - like a need to

> constantly

> > keep separated

> > from lower functioning kids.

> >

> > Just my two cents...

> >

> > -

> >

> > Jimmy 10/12/2001

> >

>

________________________________________________________________________________\

____

> Catch up on fall's hot new shows on Yahoo! TV. Watch

> previews, get listings, and more!

> http://tv.yahoo.com/collections/3658

>

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September 27, 2007

, I want to apologize if the descriptions of my son have offended

you or others in any way what so ever and offer an explanation. Many of us

describe our children's abilities to help others understand not only where

they are but also what to expect. I've never meant to offend and have

always considered/called all levels of functioning " our children " when

advocating.

Tonya

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of jennifer_flinton

On a side note - I have always had my feathers a little ruffled by

parents who constantly point out that their child has " high

functioning " autism. I can see this being a necessity when talking

to non-autism people who might not realize that there is a spectrum,

but when talking to us autism parents, it sort of seems like bragging

to keep mentioning this - like a need to constantly keep separated

from lower functioning kids.

September 27, 2007

My 5 year old son is in the evaluation stage right now. I believe him to be

PDD-NOS but it is mild. I know someone else who has some of the same issues but

it is more severe. I keep hearing alot on these boards about regression. How

common is it for a child to regress? Am I fooling myself to think that he

shouldn't have many of the serious issues I hear about because he appears mildly

affected now? This is all new to me and I appreciate any feedback I can get.

Aliza Ratterree wrote:

Likewise, my daughter is very verbal. She was originally diagnosed as

PDD-NOS at 2-1/2 years of age, then recently, at 8 years of age, reassigned the

ASD label. Has she regressed? Quite the contrary. But I always used the word

" autistic " to describe her. As far as I'm concerned, PDD-NOS = autism. I've met

people whose children are CLEARLY, severely autistic, and when I say " my

daughter has autism, too " , they insist their child is not autistic- they have

PDD. Is this denial?

RE: [Texas-Autism- Advocacy] Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

.. . . . . . . . .

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

..

September 27, 2007

I don't know if I would use the word " regression " in this situation. When our

daughter was first diagnosed, we thought that if she could only learn to speak,

then she would be alright- everything would be alright. She did learn to speak,

but she had far to go. As she got older, we began to see behaviors develop that

had not yet reared their ugly heads, such as OCD. Such as anxiety produced

mini-tantrums. Noncompliance the likes of which we'd never encountered.

Aggression towards others. New and interesting (and sometimes maddening) stims.

There were and are new challenges that must be addressed all the time. I

believe this is pretty common. So don't be alarmed, you may never encounter

these things, but be prepared. By all means, get all the therapy that you can,

explore every avenue. And know that you do have the strength and patience to

deal with anything that comes your way. Our kids can do amazing things.

Aliza

RE: [Texas-Autism- Advocacy] Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

.. . . . . . . . .

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

..

September 27, 2007

This is what gets me too. As you all know, my son has a " medical " diagnosis

of PDD-NOS, which the school does not even acknowledge. I've talked to my

sister in law on several occasions about it, most recently about all the

trouble he gets into- not following directions, talking, not keeping his

hands to himself... but as she said, he's doing so well academically, they

re not going to give him a special ed label due to bad behavior. He just got

a progress report last Friday and his lowest grade was a 95, except his

citizenship was a 75. She's right. They're NOT going to give him services.

It's pathetic, but true.

Anne

-- Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

I am sure this has been discussed in some detail, but do you think his

behavior issues are a direct result of his diagnosis of PDD-NOS. It seems

that he would qualify for services based on that alone. So sad that he is

possibly being misunderstood at school due to the staff not recognizing the

PDD-NOS.

On another note - how exciting that he is making such excellent grades! Way

to go!!!

>

> This is what gets me too. As you all know, my son has a " medical "

> diagnosis

> of PDD-NOS, which the school does not even acknowledge. I've talked to my

> sister in law on several occasions about it, most recently about all the

> trouble he gets into- not following directions, talking, not keeping his

> hands to himself... but as she said, he's doing so well academically, they

> re not going to give him a special ed label due to bad behavior. He just

> got

> a progress report last Friday and his lowest grade was a 95, except his

> citizenship was a 75. She's right. They're NOT going to give him services.

> It's pathetic, but true.

>

> Anne

>

> -- Re: Where is Barbara Walters Medical

> Degree?

>

> Can I ask something without starting a fight??

>

> I feel like as parents we want to have our cake and eat it too. It's

> a very mixed signal we're sending out to people.

>

> On one hand we state that once you have autism, you'll always have

> it. You can have major improvements because of the treatments or

> services we have put in place, but to expect regression if those

> services are removed. We use that as the reason to fight schools

> when they see improvements in our kids and decide to remove services.

>

> Then, some are saying that you can essentially " cure " autism. That

> their kids have completely recovered, etc....

>

> Does anyone else think we're all just shooting ourselves in the foot

> with the very contradicting info we as the autism community are

> putting out there?

>

> It can really hurt our credibility as a whole when you have one

> parent explaining, invoking sympathy, because their child will ALWAYS

> be like this. Then, on the other hand as a group becoming outraged

> that Barbara Walters would then state you can't cure autism.

>

> Am I making sense at all??

>

September 27, 2007

Thank you for the encouragement. I feel Nick is amazing which is one reason I

hate for him to have a " label " . It's amazing how, even though all children are

different, autism or not, schools don't want to treat them as individuals unless

they have a specific " disorder " . As far as OCD and the such, he seems to be

getting better with age rather then worse. He was far more obsessive at 3 or 4

then he is now at 5. He is finding ways to deal with it and I find I am

becoming more relaxed about it and trying to " pick and choose " my battles, so to

speak. He seems to be doing better in school then I thought he would. He has

had a few incidents of throwing himself on the floor and refusing to get up the

first few weeks but the school hasn't told me about any this week so this is

good. I would imagine that puberty must be hard on autistic children. I mean I

know what my oldest boy went through at around 13/14 with anger and he doesn't

have the autism to deal with. I'm

waiting for my 13 year old to go through that stage now. This group is great

and I'm glad my friend told me about it.

Aliza Ratterree wrote:

I don't know if I would use the word " regression " in this situation.

When our daughter was first diagnosed, we thought that if she could only learn

to speak, then she would be alright- everything would be alright. She did learn

to speak, but she had far to go. As she got older, we began to see behaviors

develop that had not yet reared their ugly heads, such as OCD. Such as anxiety

produced mini-tantrums. Noncompliance the likes of which we'd never encountered.

Aggression towards others. New and interesting (and sometimes maddening) stims.

There were and are new challenges that must be addressed all the time. I believe

this is pretty common. So don't be alarmed, you may never encounter these

things, but be prepared. By all means, get all the therapy that you can, explore

every avenue. And know that you do have the strength and patience to deal with

anything that comes your way. Our kids can do amazing things.

Aliza

RE: [Texas-Autism- Advocacy] Re: Where is Barbara Walters Medical

Degree?

You hit the nail on the head why policy makers are getting frustrated

with the autism community.

Which is why I say that before 1 single cent more goes to the great

genetic snipe hunt, priority for research funding MUST be given to

sorting out the sub-types and determining the characteristics of that.

.. . . . . . . . .

Right now, I just don't think we're comparing apples to apples when

we talk about autism most of the time and so people go passionately

off into different directions with their real, but very different

experience.

..

September 27, 2007

How can they deny him services if he has a medical diagnosis? Have you tried

calling the Board of Education? Look up on their website under special ed and

ask someone directly what you can do if you haven't all ready.

Anne wrote:

This is what gets me too. As you all know, my son has a " medical "

diagnosis

of PDD-NOS, which the school does not even acknowledge. I've talked to my

sister in law on several occasions about it, most recently about all the

trouble he gets into- not following directions, talking, not keeping his

hands to himself... but as she said, he's doing so well academically, they

re not going to give him a special ed label due to bad behavior. He just got

a progress report last Friday and his lowest grade was a 95, except his

citizenship was a 75. She's right. They're NOT going to give him services.

It's pathetic, but true.

Anne

-- Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

Because he doesn't have an " educational need " .

Anne

-- Re: Where is Barbara Walters Medical

Degree?

Can I ask something without starting a fight??

I feel like as parents we want to have our cake and eat it too. It's

a very mixed signal we're sending out to people.

On one hand we state that once you have autism, you'll always have

it. You can have major improvements because of the treatments or

services we have put in place, but to expect regression if those

services are removed. We use that as the reason to fight schools

when they see improvements in our kids and decide to remove services.

Then, some are saying that you can essentially " cure " autism. That

their kids have completely recovered, etc....

Does anyone else think we're all just shooting ourselves in the foot

with the very contradicting info we as the autism community are

putting out there?

It can really hurt our credibility as a whole when you have one

parent explaining, invoking sympathy, because their child will ALWAYS

be like this. Then, on the other hand as a group becoming outraged

that Barbara Walters would then state you can't cure autism.

Am I making sense at all??

September 27, 2007

Thanks Staci,

Yes, I firmly believe his behaviors are tied to his diagnosis, although I do

believe he fits Aspergers more than PDD-NOS.

I'm very proud of his grades. This is the problem those of us with high

functioning kids have. The school districts think academics is what it's all

about and all that counts, so we have these kids like mine that do well with

academics, and suck with social things. So what can you do, you know? Unless

you have money to hire attorneys and such, you just have to figure out a way

to deal with it. Personally, I spend my time day dreaming about the day the

school calls me to tell me my son needs to be paddled for bad behavior and I

can say, " I don't think so. For 4 years, I've been telling the

administration of this school that he needed services, and if you had given

him the social skills things he needed then, maybe we wouldn't be in this

predicament now. So sorry. "

Anne

-- Re: Where is Barbara Walters Medical

> Degree?

>

> Can I ask something without starting a fight??

>

> I feel like as parents we want to have our cake and eat it too. It's

> a very mixed signal we're sending out to people.

>

> On one hand we state that once you have autism, you'll always have

> it. You can have major improvements because of the treatments or

> services we have put in place, but to expect regression if those

> services are removed. We use that as the reason to fight schools

> when they see improvements in our kids and decide to remove services.

>

> Then, some are saying that you can essentially " cure " autism. That

> their kids have completely recovered, etc....

>

> Does anyone else think we're all just shooting ourselves in the foot

> with the very contradicting info we as the autism community are

> putting out there?

>

> It can really hurt our credibility as a whole when you have one

> parent explaining, invoking sympathy, because their child will ALWAYS

> be like this. Then, on the other hand as a group becoming outraged

> that Barbara Walters would then state you can't cure autism.

>

> Am I making sense at all??

>

September 27, 2007

It's just like us with other issues -- if they don't want to do it,

they just deny it and force you to appeal.

Vickie

_____

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of singin4mom

Sent: Thursday, September 27, 2007 7:27 PM

To: Texas-Autism-Advocacy

Subject: Re: Classifcation-somthing to think about

re: Walters

How can they deny him services if he has a medical diagnosis? Have you tried

calling the Board of Education? Look up on their website under special ed

and ask someone directly what you can do if you haven't all ready.

Anne <Lady_Annepeoplepc (DOT) <mailto:Lady_Anne%40peoplepc.com> com> wrote: