Re: You Tube Video Blasts Autism Speaks

[Guest guest]

As the mother of a child with Aspergers and one

with HFA, it makes me unbelievably sad that we,

as a community of parents, would even be having

this conversation.

We are all suffering. Our children are all

suffering. Any discussion of who's suffering

more, my child or yours, makes people feel like

their suffering isn't real, or isn't being

acknowledged.

I may be " luckier " than some, but it's unlikely

that either of my children will end up being

afootball star, a congressman, or even a father

with children of his own.

Pain is pain, and we are all in it.

Kim

--- analyzinggal <mcstrom@...> wrote:

> Lenny,

>

> Hon, I have to respectfully disagree with you

> on this subject.

>

> I understand what you are saying, but I also

> think there is a lack of knowledge when it

> comes to Asperger's. Most attention goes to

> more severe cases of autism, and the only

> media coverage goes towards very high

> functioning aspergers.

>

> Asperger's has a spectrum in itself, varying

> from very high functioning that probably fits

> what you describe as being disadvantaged rather

> than disabled. On the other end, it is

> more like high functioning autism.

>

> A person would be hardpressed to find a kid

> with asperger's that is higher functioning

> than my son. BUT, he has the SAME IDENTICAL

> problems and symptoms as a child with

> autism, just on another level.

>

> He barely spoke at all as a toddler. When he

> did, he reversed his pronouns, did not

> understand language and was evaluated at 3

> years of age as being 15 months behind in

> language development. He has profound speech

> disorder, auditory processing disorder

> and still doesn't know simple words like what

> an 'end table' is. He never responded to his

> name, ignored people, gets fixated on things

> and is in a constant state of confusion about

> life in general.

>

> His coordination problems were so bad that he

> could not walk in shoes. He is eleven years

> old and still can't use a knife to cut his own

> food. He couldn't skip until the age of 8 and

> has such severe upper body weakness that he

> canot even hold his baby sister without her

> slipping within moments. He is painfully thin,

> has the same food likes and dislikes as

> anyone else's kid here and has the same issues

> with not feeling all levels of pain.

>

> He gets easily frustrated, has melt downs and

> cries because we called him to dinner and

> he thinks we were yelling at him because we

> raised our voices.

>

> He lined up cars, just like autistic kids do.

> He fixated on small stones and threw them at

> the ground over and over again for hours, just

> like an autistic kid would do. He made no

> eye contact, curled away from touches, and so

> on and so on and so on.

>

> He has come a long long way and we are so proud

> of him, but he struggles every day of

> his life. And while the situations are very

> different, in some ways it is better and others

> are

> worse. He has to live and function in a world

> he does not understand. He has no aid

> walking around with him all day, keeping him

> safe and protected from noises, anxieties

> and bullies. He has the constant struggle of

> teachers with high expectations that he

> cannot meet. He tries to fit in and can't

> undersand what he does wrong.

>

> He is disabled, but with no protection. And

> while I am ecstatic that he is doing as well as

>

> he does, I also live with an a child who has

> the same issues any child here has with the

> exception of him having words. The only other

> difference is the level of disability in each

> area, some of which may be worse for him than

> for others who are considered more

> severe.

>

> Asperger's is autism, and the only real

> defining difference is that they acquired

> language

> at a normal level. It has been heavily debated

> as to whether or not asperger's should even

> be defined as different than high functioning

> autism since many with asperger's, my son

> included, DID have language development delays.

> Because there is a known spectrum of

> problems with autism, and asperger's should not

> be differentiated as something other

> than autism. It is simply a higher functioning

> form with its own set of individual problems.

>

> I am not trying to say that it is as bad as

> having classic or more severe autism. It is

> just

> different in that the same symptoms are

> present, but at a different level. We all are

> in the

> same boat of autism which is why we are all

> here. Some boats may be better than others,

> but the water we are treading is the same river

> going upstream.

>

> And yes, parents of kids with asperger's are in

> one boat that is definately different. We

> have kids that do understand what is going on,

> that they are different and we are raising

> them to be proud of themselves, to have high

> self esteem and to not 'feel' disabled, if we

> can. We struggle with telling them that it is

> ok to be different, that we are all different,

> that

> being who they are is ok.

>

> As they grow up, God willing, they will be

> proud of themselves and like who they are,

> despite their 'autism'. And if we can

> accomplish that, they will probably feel much

> like the

> neurodiverse group does. So...it is harder for

> us to bash them for all of their thoughts and

> opinions. No, we don't agree that autism is a

> choice. We don't agree that autism should

> not be cured. But, we can understand how they

> feel proud of themselves, despite having

> autism.

>

> It is a catch 22 for us and for our kids. I

> believe that is what was trying to

> convey.

>

> I am actually glad this issue came up. I think

> the lack of knowledge about asperger's drives

> a lot of people to question it. I know I have

> caught 'looks' a few times from people at

> rallys

> for even being there because my son was not

> 'autistic' enough. One woman went as far as

> to ask me right out why I was there.

>

> Maybe it was time for the discussion to open up

> so everyone can realize that parents of

> kids with asperger's are also dealing with

> plenty on our plates as well, and we are here

> fighting for the same reasons.

>

> Take care, all.

>

> Col

>

>

>

>

>

>

> > >

> > > So my son with Aspergers doesn't have a

> disability? It's all in my

> > > head??

> >

> > No , it is not in your head. It is in

> the legal definition of

> > disability. Words mean things. I didn't make

> it up. While it does vary

> > from state to state, to be disabled means you

> are disabled. It does

> > not mean you are high functioning. It means,

> for example you are

> > blind, not just severly nearsighted. It

> means, for example, you are

> > deaf, not just hard of hearing. It means,

> more or less, that if you

> > are disabled, you require profound support,

> intervention and care

> > 24/7. Aperger Syndrome is not a disability.

> Google DSM-IV.

> >

> > I do not exclude the high functioning

> disadvantaged from my advocacy.

> > Why do you put other words in my mouth? For

> someday, I hope my son

> > becomes merely HF disadvantaged, and not the

> profoundly disabled he is

> > now. But I am entirely clear that my

> advocacy starts with the

> > disabled first. I resist any advocacy that

> comes at the expense of the

> > disabled. I resist any advocacy that attempts

> to trivialized how

> > horrible autism is so that some HF people can

> feel better about

>

=== message truncated ===

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[Guest guest]

>

> As the mother of a child with Aspergers and one

> with HFA, it makes me unbelievably sad that we,

> as a community of parents, would even be having

> this conversation.

I don't believe this conversation is about who is " suffering " more.

I think it is about what words mean. ASD is not equal to autism.

One of the problems with saying a kid with aspergers is autistic, or

a kid with ADHD is autistic, is that eventually you have people

saying that Einstein was autistic, and what the hell are these

parents complaining about. Or, you have someone like Christschool

saying he is autistic, yet there he is a dad, raising a family,

making videos about what horrible parents the rest of us are.

I am NOT saying that these kids haven't been damaged by our polluted

world (medical, environmental, food). They have--I know that for a

fact. But so have kids with peanut allergies, learning disabilities,

and recurrent ear infections. So have kids with cancer. It is good

to lump all these kids togethers for some conversations, but it is

counterproductive and misleading to lump them together for ALL

conversations.

I am also NOT saying that I like the terms autism, or autism spectrum

disorder, or aspergers or any of them for that matter. I don't think

they reflect a very clear reality. However, they are what we have

to work with now. They are the terms used in the media and in the

schools and by our neighbours.

As the parent of a child with full blown autism, I do feel a moral

obligation to advocate for all kids, even those much much less

affected than my son, because it is criminal that a child suffer from

asthma, or chronic yeast overgrowth, or learning disabilities, or

eczema when they shouldn't have to. But I don't believe it is in my

son's best interests to NEVER distinguish the differences. I think

we need to be mindful of what the words we've had foisted on us mean,

even if we don't like them, because we are fighting an uphill battle

for our kids and grandkids.

Anita

[Guest guest]

>>

> I don't believe this conversation is about who is " suffering " more.

> I think it is about what words mean. ASD is not equal to autism.

> One of the problems with saying a kid with aspergers is autistic, or

> a kid with ADHD is autistic, is that eventually you have people

> saying that Einstein was autistic, and what the hell are these

> parents complaining about.

I cannot believe this logic. The " problem " with " saying " a child with asperger's

is autistic?

Are you kidding me?

I am sorry if kids who have asperger's being called " autistic " gets in your way,

but perhaps,

according to this logic, you should toss out all of the kids who are diagnosed

with

PDDNOS as well. After all, they didn't meet the criteria of classic autism,

either.

I have no problem with distinguishing between the differences, but not at the

expense of

my son or anyone else's here who didn't have enough severe symptoms for someone

else's

satisfaction.

The diagnostic criteria between aspergers and autism are IDENTICAL with the

exception of

aquiring language skills. Since many kids with asperger's did have delays in

language

development, it is heavily debated as to whether or not there should be a

separation at all

as asperger's is truly High Functioning Autism. No to mention, many kids

diagnosed with

classic autism also had language skills before they lost it and some still have

language

skills.

And no, the discussion is not about who suffers more, but it is also not about

the 'word'. It

is about parents of children with classic autism not wanting or accepting that

children with

asperger's have autism.

Your post just proved the entire point. You have reduced another form of autism

to being

on a level of peanut allergies, asthma and learning disabilities. I also

believe, as you do

that many kids were hurt with different levels of being affected. But I am not

here because

my son has a learning disability.

If a child with a higher form of autism interferes with the best interest of

your son, then

hey, that's something you are going to have to deal with. There are people here

on this

board who have 'recovered' children, children who are improving and children who

are just

diagnosed with PDD. Are they interfereing as well? What about kids who have high

functioning autism and are indistinguishable from low functioning asperger's,

yet carry the

label of autism instead?

Since many parents here also have more than one child diagnosed with different

types of

autism, such as classic autism, PDDNOS and asperger's, should they only be

calling the

one with " classic autism " their autistic child? The others don't fit?

I don't think so.

Distinguishing is fine. But please don't call it a 'problem' that a kid with

asperger's is being

called 'autism' as if we parents have made this up. Our doctors used the word

'autism'

when they diagnosed our kids, just like they did when they diagnosed yours and

kids with

PDDNOS.

Instead of considering it an interference to the best interest of your child,

why not look at

it from the true perspective? There is a spectrum...an entire spectrum of

autism...and

some kids are more affected than others. But they are all autistic. Aspergers

included.

Col

[Guest guest]

>>

> I don't believe this conversation is about who is " suffering " more.

> I think it is about what words mean. ASD is not equal to autism.

> One of the problems with saying a kid with aspergers is autistic, or

> a kid with ADHD is autistic, is that eventually you have people

> saying that Einstein was autistic, and what the hell are these

> parents complaining about.

I cannot believe this logic. The " problem " with " saying " a child with asperger's

is autistic?

Are you kidding me?

I am sorry if kids who have asperger's being called " autistic " gets in your way,

but perhaps,

according to this logic, you should toss out all of the kids who are diagnosed

with

PDDNOS as well. After all, they didn't meet the criteria of classic autism,

either.

I have no problem with distinguishing between the differences, but not at the

expense of

my son or anyone else's here who didn't have enough severe symptoms for someone

else's

satisfaction.

The diagnostic criteria between aspergers and autism are IDENTICAL with the

exception of

aquiring language skills. Since many kids with asperger's did have delays in

language

development, it is heavily debated as to whether or not there should be a

separation at all

as asperger's is truly High Functioning Autism. No to mention, many kids

diagnosed with

classic autism also had language skills before they lost it and some still have

language

skills.

And no, the discussion is not about who suffers more, but it is also not about

the 'word'. It

is about parents of children with classic autism not wanting or accepting that

children with

asperger's have autism.

Your post just proved the entire point. You have reduced another form of autism

to being

on a level of peanut allergies, asthma and learning disabilities. I also

believe, as you do

that many kids were hurt with different levels of being affected. But I am not

here because

my son has a learning disability.

If a child with a higher form of autism interferes with the best interest of

your son, then

hey, that's something you are going to have to deal with. There are people here

on this

board who have 'recovered' children, children who are improving and children who

are just

diagnosed with PDD. Are they interfereing as well? What about kids who have high

functioning autism and are indistinguishable from low functioning asperger's,

yet carry the

label of autism instead?

Since many parents here also have more than one child diagnosed with different

types of

autism, such as classic autism, PDDNOS and asperger's, should they only be

calling the

one with " classic autism " their autistic child? The others don't fit?

I don't think so.

Distinguishing is fine. But please don't call it a 'problem' that a kid with

asperger's is being

called 'autism' as if we parents have made this up. Our doctors used the word

'autism'

when they diagnosed our kids, just like they did when they diagnosed yours and

kids with

PDDNOS.

Instead of considering it an interference to the best interest of your child,

why not look at

it from the true perspective? There is a spectrum...an entire spectrum of

autism...and

some kids are more affected than others. But they are all autistic. Aspergers

included.

Col

[Guest guest]

In EOHarm , "Anita" <mysuperteach@...> wrote:>> > I don't believe this conversation is about who is "suffering" more. > I think it is about what words mean. ASD is not equal to autism. > One of the problems with saying a kid with aspergers is autistic, or > a kid with ADHD is autistic, is that eventually you have people > saying that Einstein was autistic, and what the hell are these > parents complaining about.

Col answered:

I cannot believe this logic. The "problem" with "saying" a child with asperger's is autistic? Are you kidding me?--------------------------------------------------------------------------------------------------------------------------------

Again, I must be missing something in this ongoing "emotional" discussion over a Youtube video that sought to disparage Autism Speaks "Autism Everyday".

Apparently, the video producers attacked Autism Speaks "Autism Everyday" production because they didn't like the daily experience "Autism Everyday" presented in the video. They would have much preferred the video depict a more "hopeful and uplifting" EVERYDAY experience, such as, Jayson McElwain's remarkable "ONCE IN A LIFE-TIME" experience on a baskeball court.

This discussion should be about the Youtube video-----PERIOD. Was it a "fair and balanced" attack on "Autism Everyday". I would respectfully suggest it was NOT.

In any event, I know for certain that "Autism Everyday" showed exactly what a day in the life of my own family is. For Youtube producers to suggest the families shown in "Autism Everyday" were seeking "pity" rather than "understanding" seems an unwarranted, unnecessarily mean-spirited attempt to deny their "reality".

See what's free at AOL.com.

[Guest guest]

In EOHarm , "Anita" <mysuperteach@...> wrote:>> > I don't believe this conversation is about who is "suffering" more. > I think it is about what words mean. ASD is not equal to autism. > One of the problems with saying a kid with aspergers is autistic, or > a kid with ADHD is autistic, is that eventually you have people > saying that Einstein was autistic, and what the hell are these > parents complaining about.

Col answered:

I cannot believe this logic. The "problem" with "saying" a child with asperger's is autistic? Are you kidding me?--------------------------------------------------------------------------------------------------------------------------------

Again, I must be missing something in this ongoing "emotional" discussion over a Youtube video that sought to disparage Autism Speaks "Autism Everyday".

Apparently, the video producers attacked Autism Speaks "Autism Everyday" production because they didn't like the daily experience "Autism Everyday" presented in the video. They would have much preferred the video depict a more "hopeful and uplifting" EVERYDAY experience, such as, Jayson McElwain's remarkable "ONCE IN A LIFE-TIME" experience on a baskeball court.

This discussion should be about the Youtube video-----PERIOD. Was it a "fair and balanced" attack on "Autism Everyday". I would respectfully suggest it was NOT.

In any event, I know for certain that "Autism Everyday" showed exactly what a day in the life of my own family is. For Youtube producers to suggest the families shown in "Autism Everyday" were seeking "pity" rather than "understanding" seems an unwarranted, unnecessarily mean-spirited attempt to deny their "reality".

See what's free at AOL.com.

[Guest guest]

Col, I don't think anyone disagrees with you. The problem is that

the jerk who made the video is one who wants to celebrate the joy of

autism and use minimally affected children to make it look like

autism is no big deal.

I think this nut diagnosed himself as an adult to make himself

feel better about being a screwball. So, he wants the whole world to

be more accepting of screwballs. In the process, he would like

everyone to ignore those feces smearing children who can't do

anything for themselves. Because of lowlifes like this guy spreading

their message of not helping anyone with autism, it might be a good

idea to separate the lesser forms of autism so everyone understands

the difference in severity. Of course, sane parents who want to help

their kids should be encouraged to do so in spite of nuts who want to

celebrate the fact that their kid is not normal.

> >>

> > I don't believe this conversation is about who is " suffering "

more.

> > I think it is about what words mean. ASD is not equal to

autism.

> > One of the problems with saying a kid with aspergers is autistic,

or

> > a kid with ADHD is autistic, is that eventually you have people

> > saying that Einstein was autistic, and what the hell are these

> > parents complaining about.

>

> I cannot believe this logic. The " problem " with " saying " a child

with asperger's is autistic?

> Are you kidding me?

>

> I am sorry if kids who have asperger's being called " autistic " gets

in your way, but perhaps,

> according to this logic, you should toss out all of the kids who

are diagnosed with

> PDDNOS as well. After all, they didn't meet the criteria of classic

autism, either.

>

> I have no problem with distinguishing between the differences, but

not at the expense of

> my son or anyone else's here who didn't have enough severe symptoms

for someone else's

> satisfaction.

>

> The diagnostic criteria between aspergers and autism are IDENTICAL

with the exception of

> aquiring language skills. Since many kids with asperger's did have

delays in language

> development, it is heavily debated as to whether or not there

should be a separation at all

> as asperger's is truly High Functioning Autism. No to mention, many

kids diagnosed with

> classic autism also had language skills before they lost it and

some still have language

> skills.

>

> And no, the discussion is not about who suffers more, but it is

also not about the 'word'. It

> is about parents of children with classic autism not wanting or

accepting that children with

> asperger's have autism.

>

> Your post just proved the entire point. You have reduced another

form of autism to being

> on a level of peanut allergies, asthma and learning disabilities. I

also believe, as you do

> that many kids were hurt with different levels of being affected.

But I am not here because

> my son has a learning disability.

>

> If a child with a higher form of autism interferes with the best

interest of your son, then

> hey, that's something you are going to have to deal with. There are

people here on this

> board who have 'recovered' children, children who are improving and

children who are just

> diagnosed with PDD. Are they interfereing as well? What about kids

who have high

> functioning autism and are indistinguishable from low functioning

asperger's, yet carry the

> label of autism instead?

>

> Since many parents here also have more than one child diagnosed

with different types of

> autism, such as classic autism, PDDNOS and asperger's, should they

only be calling the

> one with " classic autism " their autistic child? The others don't

fit?

>

> I don't think so.

>

> Distinguishing is fine. But please don't call it a 'problem' that a

kid with asperger's is being

> called 'autism' as if we parents have made this up. Our doctors

used the word 'autism'

> when they diagnosed our kids, just like they did when they

diagnosed yours and kids with

> PDDNOS.

>

> Instead of considering it an interference to the best interest of

your child, why not look at

> it from the true perspective? There is a spectrum...an entire

spectrum of autism...and

> some kids are more affected than others. But they are all autistic.

Aspergers included.

>

> Col

>

[Guest guest]

Col, I don't think anyone disagrees with you. The problem is that

the jerk who made the video is one who wants to celebrate the joy of

autism and use minimally affected children to make it look like

autism is no big deal.

I think this nut diagnosed himself as an adult to make himself

feel better about being a screwball. So, he wants the whole world to

be more accepting of screwballs. In the process, he would like

everyone to ignore those feces smearing children who can't do

anything for themselves. Because of lowlifes like this guy spreading

their message of not helping anyone with autism, it might be a good

idea to separate the lesser forms of autism so everyone understands

the difference in severity. Of course, sane parents who want to help

their kids should be encouraged to do so in spite of nuts who want to

celebrate the fact that their kid is not normal.

> >>

> > I don't believe this conversation is about who is " suffering "

more.

> > I think it is about what words mean. ASD is not equal to

autism.

> > One of the problems with saying a kid with aspergers is autistic,

or

> > a kid with ADHD is autistic, is that eventually you have people

> > saying that Einstein was autistic, and what the hell are these

> > parents complaining about.

>

> I cannot believe this logic. The " problem " with " saying " a child

with asperger's is autistic?

> Are you kidding me?

>

> I am sorry if kids who have asperger's being called " autistic " gets

in your way, but perhaps,

> according to this logic, you should toss out all of the kids who

are diagnosed with

> PDDNOS as well. After all, they didn't meet the criteria of classic

autism, either.

>

> I have no problem with distinguishing between the differences, but

not at the expense of

> my son or anyone else's here who didn't have enough severe symptoms

for someone else's

> satisfaction.

>

> The diagnostic criteria between aspergers and autism are IDENTICAL

with the exception of

> aquiring language skills. Since many kids with asperger's did have

delays in language

> development, it is heavily debated as to whether or not there

should be a separation at all

> as asperger's is truly High Functioning Autism. No to mention, many

kids diagnosed with

> classic autism also had language skills before they lost it and

some still have language

> skills.

>

> And no, the discussion is not about who suffers more, but it is

also not about the 'word'. It

> is about parents of children with classic autism not wanting or

accepting that children with

> asperger's have autism.

>

> Your post just proved the entire point. You have reduced another

form of autism to being

> on a level of peanut allergies, asthma and learning disabilities. I

also believe, as you do

> that many kids were hurt with different levels of being affected.

But I am not here because

> my son has a learning disability.

>

> If a child with a higher form of autism interferes with the best

interest of your son, then

> hey, that's something you are going to have to deal with. There are

people here on this

> board who have 'recovered' children, children who are improving and

children who are just

> diagnosed with PDD. Are they interfereing as well? What about kids

who have high

> functioning autism and are indistinguishable from low functioning

asperger's, yet carry the

> label of autism instead?

>

> Since many parents here also have more than one child diagnosed

with different types of

> autism, such as classic autism, PDDNOS and asperger's, should they

only be calling the

> one with " classic autism " their autistic child? The others don't

fit?

>

> I don't think so.

>

> Distinguishing is fine. But please don't call it a 'problem' that a

kid with asperger's is being

> called 'autism' as if we parents have made this up. Our doctors

used the word 'autism'

> when they diagnosed our kids, just like they did when they

diagnosed yours and kids with

> PDDNOS.

>

> Instead of considering it an interference to the best interest of

your child, why not look at

> it from the true perspective? There is a spectrum...an entire

spectrum of autism...and

> some kids are more affected than others. But they are all autistic.

Aspergers included.

>

> Col

>

[Guest guest]

>

> I am sorry if kids who have asperger's being called " autistic " gets

in your way, but perhaps,

> according to this logic, you should toss out all of the kids who

are diagnosed with

> PDDNOS as well. After all, they didn't meet the criteria of classic

autism, either.

I'm not sure why you're trying to imply that I want to " toss out all

of the kids " who don't meet the criteria for classic autism. What

I'm trying to say is that each of these terms means something

relatively specific and that can be important within certain

conversations. I spend an enormous amount of time helping people

whose kids are PDD-NOS or Asperger's or ADHD because I know that

these kids have been damaged.

>

> I have no problem with distinguishing between the differences, but

not at the expense of

> my son or anyone else's here who didn't have enough severe symptoms

for someone else's

> satisfaction.

This is not about my satisfaction, and I don't think it is fair to

imply that I would prefer that ANY child be more autistic. I am not

trying to do anything at the expense of your child. My point is that

by watering down the specific meanings of the terms we've been given,

we can be doing it at the expense of a lot of kids. As I said, we

can end up, as evidenced by many things we see in the media or now on

places like youtube, with people thinking what's wrong with being

autistic if it means you're Bill Gates or Albert Einstein?

>

> The diagnostic criteria between aspergers and autism are IDENTICAL

with the exception of

> aquiring language skills.

This isn't true. Here are two of the important differences between

full blown autism (NOT autistic spectrum disorder) and Asperger's.

To be diagnosed Asperger's as opposed to something else, you must

meet these two criteria:

" D. There is no clinically significant general delay in language

(e.g., single words used by age 2 years, communicative phrases used

by age 3 years)

E. There is no clinically significant delay in cognitive development

or in the development of age-appropriate self-help skills, adaptive

behavior (other than social interaction), and curiosity about the

environment in childhood. "

I am not trying to diminish the severity of the damage done to your

child, or the difficulties he and your family face as a result of

that. However, these two criteria I've given above are pretty

significant, and I don't want the severity of the damage done to my

child--who cannot speak, who has significant delays in cognitive

development, who has very few self help skills, very few appropriate

adaptive behaviours, and almost no curiosity--to be diminished

either. And that is what I'm afraid is one of the results of not

using the language precisely.

Since many kids with asperger's did have delays in language

> development, it is heavily debated as to whether or not there

should be a separation at all

> as asperger's is truly High Functioning Autism. No to mention, many

kids diagnosed with

> classic autism also had language skills before they lost it and

some still have language

> skills.

>

> And no, the discussion is not about who suffers more, but it is

also not about the 'word'. It

> is about parents of children with classic autism not wanting or

accepting that children with

> asperger's have autism.

Children diagnosed with Asperger's have an autism spectrum disorder.

That is very clear. There are others with an ASD who are not

diagnosed Asperger's. Some of these kids have autistic disorder, or

what I called in my last post full blown autism.

>

> Your post just proved the entire point. You have reduced another

form of autism to being

> on a level of peanut allergies, asthma and learning disabilities. I

also believe, as you do

> that many kids were hurt with different levels of being affected.

But I am not here because

> my son has a learning disability.

I am not trying to reduce anything. And, since kids can die from

peanut allergies and allergies, I'm not sure where you would get the

idea that somehow it is something less. I also mentioned that kids

get cancer from toxic insults and I doubt that the parents of my

students who have died of cancer, or had their legs amputated to

cancer, would think that these things are less either. I am trying

to say that they are something different, and that sometimes, in some

contexts, that something different is quite important.

>

> If a child with a higher form of autism interferes with the best

interest of your son, then

> hey, that's something you are going to have to deal with. There are

people here on this

> board who have 'recovered' children, children who are improving and

children who are just

> diagnosed with PDD. Are they interfereing as well? What about kids

who have high

> functioning autism and are indistinguishable from low functioning

asperger's, yet carry the

> label of autism instead?

As I said, I don't think that the labels are particularly good, and I

am fully aware that because this is a spectrum a child diagnosed with

autism but is so-called high-functioning could easily look a lot like

a child diagnosed with Asperger's but just barely met those

criteria. And I never said that anyone's child is " interfering " with

the bests interests of my son, but the results of not using the

terminology precisely can interfere. I have given a couple examples,

but we see these things around us all the time: look at recent posts

about Sigourney Weaver's " inner autism " .

>

> Since many parents here also have more than one child diagnosed

with different types of

> autism, such as classic autism, PDDNOS and asperger's, should they

only be calling the

> one with " classic autism " their autistic child? The others don't

fit?

>

> I don't think so.

>

> Distinguishing is fine. But please don't call it a 'problem' that a

kid with asperger's is being

> called 'autism' as if we parents have made this up. Our doctors

used the word 'autism'

> when they diagnosed our kids, just like they did when they

diagnosed yours and kids with

> PDDNOS.

I never said or implied that you made anything up. But that does

raise the point I am trying to make. People do feel that they can

make up their own diagnosis now. The meanings get watered down until

they are meaningless, and then what are we left with in the public

eye? You may find this hard to believe, but I make this arguement as

much for your son's sake as I do for my son's. I don't want people

to dismiss you as whiny mom who should appreciate the Bill Gates she

is raising. To use another analogy, what if every time a kid got

less than 100% on a test or assignment, we started saying that kid

had a learning disability. If this happens often enough, that

doesn't leave the kids who have an actual learning disability with

anything to describe (no matter how badly) what it is they're

struggling with. So, LD has a specific meaning and it should

continue to have one.

>

> Instead of considering it an interference to the best interest of

your child, why not look at

> it from the true perspective? There is a spectrum...an entire

spectrum of autism...and

> some kids are more affected than others. But they are all autistic.

Aspergers included.

Do you find it acceptable when people diagnose themselves with

Asperger's or diagnose the dead (like Einstein) with Asperger's? Do

you look at your kid and say, yeah, he's just like Einstein? From

your description, I don't think so. I think if I were in your shoes

I would be very upset that these people are taking a word and simply

changing it to mean what they want it to mean. This is all I'm

saying about the word that we've been given to describe kids who meet

the DSM-IV for autistic, as opposed to other things like PDD-NOS or

Asperger's.

Anita

>

> Col

>

[Guest guest]

>

> I am sorry if kids who have asperger's being called " autistic " gets

in your way, but perhaps,

> according to this logic, you should toss out all of the kids who

are diagnosed with

> PDDNOS as well. After all, they didn't meet the criteria of classic

autism, either.

I'm not sure why you're trying to imply that I want to " toss out all

of the kids " who don't meet the criteria for classic autism. What

I'm trying to say is that each of these terms means something

relatively specific and that can be important within certain

conversations. I spend an enormous amount of time helping people

whose kids are PDD-NOS or Asperger's or ADHD because I know that

these kids have been damaged.

>

> I have no problem with distinguishing between the differences, but

not at the expense of

> my son or anyone else's here who didn't have enough severe symptoms

for someone else's

> satisfaction.

This is not about my satisfaction, and I don't think it is fair to

imply that I would prefer that ANY child be more autistic. I am not

trying to do anything at the expense of your child. My point is that

by watering down the specific meanings of the terms we've been given,

we can be doing it at the expense of a lot of kids. As I said, we

can end up, as evidenced by many things we see in the media or now on

places like youtube, with people thinking what's wrong with being

autistic if it means you're Bill Gates or Albert Einstein?

>

> The diagnostic criteria between aspergers and autism are IDENTICAL

with the exception of

> aquiring language skills.

This isn't true. Here are two of the important differences between

full blown autism (NOT autistic spectrum disorder) and Asperger's.

To be diagnosed Asperger's as opposed to something else, you must

meet these two criteria:

" D. There is no clinically significant general delay in language

(e.g., single words used by age 2 years, communicative phrases used

by age 3 years)

E. There is no clinically significant delay in cognitive development

or in the development of age-appropriate self-help skills, adaptive

behavior (other than social interaction), and curiosity about the

environment in childhood. "

I am not trying to diminish the severity of the damage done to your

child, or the difficulties he and your family face as a result of

that. However, these two criteria I've given above are pretty

significant, and I don't want the severity of the damage done to my

child--who cannot speak, who has significant delays in cognitive

development, who has very few self help skills, very few appropriate

adaptive behaviours, and almost no curiosity--to be diminished

either. And that is what I'm afraid is one of the results of not

using the language precisely.

Since many kids with asperger's did have delays in language

> development, it is heavily debated as to whether or not there

should be a separation at all

> as asperger's is truly High Functioning Autism. No to mention, many

kids diagnosed with

> classic autism also had language skills before they lost it and

some still have language

> skills.

>

> And no, the discussion is not about who suffers more, but it is

also not about the 'word'. It

> is about parents of children with classic autism not wanting or

accepting that children with

> asperger's have autism.

Children diagnosed with Asperger's have an autism spectrum disorder.

That is very clear. There are others with an ASD who are not

diagnosed Asperger's. Some of these kids have autistic disorder, or

what I called in my last post full blown autism.

>

> Your post just proved the entire point. You have reduced another

form of autism to being

> on a level of peanut allergies, asthma and learning disabilities. I

also believe, as you do

> that many kids were hurt with different levels of being affected.

But I am not here because

> my son has a learning disability.

I am not trying to reduce anything. And, since kids can die from

peanut allergies and allergies, I'm not sure where you would get the

idea that somehow it is something less. I also mentioned that kids

get cancer from toxic insults and I doubt that the parents of my

students who have died of cancer, or had their legs amputated to

cancer, would think that these things are less either. I am trying

to say that they are something different, and that sometimes, in some

contexts, that something different is quite important.

>

> If a child with a higher form of autism interferes with the best

interest of your son, then

> hey, that's something you are going to have to deal with. There are

people here on this

> board who have 'recovered' children, children who are improving and

children who are just

> diagnosed with PDD. Are they interfereing as well? What about kids

who have high

> functioning autism and are indistinguishable from low functioning

asperger's, yet carry the

> label of autism instead?

As I said, I don't think that the labels are particularly good, and I

am fully aware that because this is a spectrum a child diagnosed with

autism but is so-called high-functioning could easily look a lot like

a child diagnosed with Asperger's but just barely met those

criteria. And I never said that anyone's child is " interfering " with

the bests interests of my son, but the results of not using the

terminology precisely can interfere. I have given a couple examples,

but we see these things around us all the time: look at recent posts

about Sigourney Weaver's " inner autism " .

>

> Since many parents here also have more than one child diagnosed

with different types of

> autism, such as classic autism, PDDNOS and asperger's, should they

only be calling the

> one with " classic autism " their autistic child? The others don't

fit?

>

> I don't think so.

>

> Distinguishing is fine. But please don't call it a 'problem' that a

kid with asperger's is being

> called 'autism' as if we parents have made this up. Our doctors

used the word 'autism'

> when they diagnosed our kids, just like they did when they

diagnosed yours and kids with

> PDDNOS.

I never said or implied that you made anything up. But that does

raise the point I am trying to make. People do feel that they can

make up their own diagnosis now. The meanings get watered down until

they are meaningless, and then what are we left with in the public

eye? You may find this hard to believe, but I make this arguement as

much for your son's sake as I do for my son's. I don't want people

to dismiss you as whiny mom who should appreciate the Bill Gates she

is raising. To use another analogy, what if every time a kid got

less than 100% on a test or assignment, we started saying that kid

had a learning disability. If this happens often enough, that

doesn't leave the kids who have an actual learning disability with

anything to describe (no matter how badly) what it is they're

struggling with. So, LD has a specific meaning and it should

continue to have one.

>

> Instead of considering it an interference to the best interest of

your child, why not look at

> it from the true perspective? There is a spectrum...an entire

spectrum of autism...and

> some kids are more affected than others. But they are all autistic.

Aspergers included.

Do you find it acceptable when people diagnose themselves with

Asperger's or diagnose the dead (like Einstein) with Asperger's? Do

you look at your kid and say, yeah, he's just like Einstein? From

your description, I don't think so. I think if I were in your shoes

I would be very upset that these people are taking a word and simply

changing it to mean what they want it to mean. This is all I'm

saying about the word that we've been given to describe kids who meet

the DSM-IV for autistic, as opposed to other things like PDD-NOS or

Asperger's.

Anita

>

> Col

>

[Guest guest]

I think some of the trouble lies here, in

diagnosis. You said the child doesn't meet

standards for classic autism if:

" D. There is no clinically significant general

delay in language

(e.g., single words used by age 2 years,

communicative phrases used

by age 3 years)

E. There is no clinically significant delay in

cognitive development

or in the development of age-appropriate

self-help skills, adaptive

behavior (other than social interaction) , and

curiosity about the

environment in childhood. "

However, both of these were true for my oldest

son, but because he speaks well now, and can

almost pass for " normal " , the doctors I've been

to want to say he's got Aspergers or PDD.

Kim

________________________________________________________________________________\

____

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

[Guest guest]

I think some of the trouble lies here, in

diagnosis. You said the child doesn't meet

standards for classic autism if:

" D. There is no clinically significant general

delay in language

(e.g., single words used by age 2 years,

communicative phrases used

by age 3 years)

E. There is no clinically significant delay in

cognitive development

or in the development of age-appropriate

self-help skills, adaptive

behavior (other than social interaction) , and

curiosity about the

environment in childhood. "

However, both of these were true for my oldest

son, but because he speaks well now, and can

almost pass for " normal " , the doctors I've been

to want to say he's got Aspergers or PDD.

Kim

________________________________________________________________________________\

____

Looking for earth-friendly autos?

Browse Top Cars by " Green Rating " at Autos' Green Center.

http://autos./green_center/

[Guest guest]

I'm sorry, but ALL these kids are on the ASD spectrum! They are

therefore all affected by " Autism " ....... again- so much fighting

each other.....a waste of time. Spend it helping each of our kids

and getting them what they need. This and some other discussions of

this type are like 2 ex spouses trying to convince the other that

each ones way of thinking is wrong and the others is right......never

gonna happen- and in the end what does it get you a divorce.....and

in the public eye? what does it get you? they end up saying, " see

those parents don't even agree on things and they want us to do this

and pass that- they are all a bunch of nuts " I for one, want all

that thinking in the public to go away- please help! And if you

think these people criticizing us are not tapped in to many of our

websites- think again! Thanks.

-- In EOHarm , " Best Jr " <bettwice33@...> wrote:

>

> Col, I don't think anyone disagrees with you. The problem is that

> the jerk who made the video is one who wants to celebrate the joy

of

> autism and use minimally affected children to make it look like

> autism is no big deal.

> I think this nut diagnosed himself as an adult to make himself

> feel better about being a screwball. So, he wants the whole world

to

> be more accepting of screwballs. In the process, he would like

> everyone to ignore those feces smearing children who can't do

> anything for themselves. Because of lowlifes like this guy

spreading

> their message of not helping anyone with autism, it might be a good

> idea to separate the lesser forms of autism so everyone understands

> the difference in severity. Of course, sane parents who want to

help

> their kids should be encouraged to do so in spite of nuts who want

to

> celebrate the fact that their kid is not normal.

>

>

> > >>

> > > I don't believe this conversation is about who is " suffering "

> more.

> > > I think it is about what words mean. ASD is not equal to

> autism.

> > > One of the problems with saying a kid with aspergers is

autistic,

> or

> > > a kid with ADHD is autistic, is that eventually you have people

> > > saying that Einstein was autistic, and what the hell are these

> > > parents complaining about.

> >

> > I cannot believe this logic. The " problem " with " saying " a child

> with asperger's is autistic?

> > Are you kidding me?

> >

> > I am sorry if kids who have asperger's being called " autistic "

gets

> in your way, but perhaps,

> > according to this logic, you should toss out all of the kids who

> are diagnosed with

> > PDDNOS as well. After all, they didn't meet the criteria of

classic

> autism, either.

> >

> > I have no problem with distinguishing between the differences,

but

> not at the expense of

> > my son or anyone else's here who didn't have enough severe

symptoms

> for someone else's

> > satisfaction.

> >

> > The diagnostic criteria between aspergers and autism are

IDENTICAL

> with the exception of

> > aquiring language skills. Since many kids with asperger's did

have

> delays in language

> > development, it is heavily debated as to whether or not there

> should be a separation at all

> > as asperger's is truly High Functioning Autism. No to mention,

many

> kids diagnosed with

> > classic autism also had language skills before they lost it and

> some still have language

> > skills.

> >

> > And no, the discussion is not about who suffers more, but it is

> also not about the 'word'. It

> > is about parents of children with classic autism not wanting or

> accepting that children with

> > asperger's have autism.

> >

> > Your post just proved the entire point. You have reduced another

> form of autism to being

> > on a level of peanut allergies, asthma and learning disabilities.

I

> also believe, as you do

> > that many kids were hurt with different levels of being affected.

> But I am not here because

> > my son has a learning disability.

> >

> > If a child with a higher form of autism interferes with the best

> interest of your son, then

> > hey, that's something you are going to have to deal with. There

are

> people here on this

> > board who have 'recovered' children, children who are improving

and

> children who are just

> > diagnosed with PDD. Are they interfereing as well? What about

kids

> who have high

> > functioning autism and are indistinguishable from low functioning

> asperger's, yet carry the

> > label of autism instead?

> >

> > Since many parents here also have more than one child diagnosed

> with different types of

> > autism, such as classic autism, PDDNOS and asperger's, should

they

> only be calling the

> > one with " classic autism " their autistic child? The others don't

> fit?

> >

> > I don't think so.

> >

> > Distinguishing is fine. But please don't call it a 'problem' that

a

> kid with asperger's is being

> > called 'autism' as if we parents have made this up. Our doctors

> used the word 'autism'

> > when they diagnosed our kids, just like they did when they

> diagnosed yours and kids with

> > PDDNOS.

> >

> > Instead of considering it an interference to the best interest of

> your child, why not look at

> > it from the true perspective? There is a spectrum...an entire

> spectrum of autism...and

> > some kids are more affected than others. But they are all

autistic.

> Aspergers included.

> >

> > Col

> >

>

[Guest guest]

I've seen kids dx'd with PDD-NOS that are worse (in terms of symptoms)

than kids dx'd with classic autism.

At Children's Hospital they'll give PDD-NOS if the psychologist feels

the parent can't " handle " hearing autism.

Discounting any child because of " severity " or the label they stick to

him/her is ridiculous.

>

> >

> > I am sorry if kids who have asperger's being called " autistic " gets

> in your way, but perhaps,

> > according to this logic, you should toss out all of the kids who

> are diagnosed with

> > PDDNOS as well. After all, they didn't meet the criteria of classic

> autism, either.

>

> I'm not sure why you're trying to imply that I want to " toss out all

> of the kids " who don't meet the criteria for classic autism. What

> I'm trying to say is that each of these terms means something

> relatively specific and that can be important within certain

> conversations. I spend an enormous amount of time helping people

> whose kids are PDD-NOS or Asperger's or ADHD because I know that

> these kids have been damaged.

>

>

> >

> > I have no problem with distinguishing between the differences, but

> not at the expense of

> > my son or anyone else's here who didn't have enough severe symptoms

> for someone else's

> > satisfaction.

>

> This is not about my satisfaction, and I don't think it is fair to

> imply that I would prefer that ANY child be more autistic. I am not

> trying to do anything at the expense of your child. My point is that

> by watering down the specific meanings of the terms we've been given,

> we can be doing it at the expense of a lot of kids. As I said, we

> can end up, as evidenced by many things we see in the media or now on

> places like youtube, with people thinking what's wrong with being

> autistic if it means you're Bill Gates or Albert Einstein?

>

>

> >

> > The diagnostic criteria between aspergers and autism are IDENTICAL

> with the exception of

> > aquiring language skills.

>

>

>

> This isn't true. Here are two of the important differences between

> full blown autism (NOT autistic spectrum disorder) and Asperger's.

> To be diagnosed Asperger's as opposed to something else, you must

> meet these two criteria:

>

> " D. There is no clinically significant general delay in language

> (e.g., single words used by age 2 years, communicative phrases used

> by age 3 years)

> E. There is no clinically significant delay in cognitive development

> or in the development of age-appropriate self-help skills, adaptive

> behavior (other than social interaction), and curiosity about the

> environment in childhood. "

>

> I am not trying to diminish the severity of the damage done to your

> child, or the difficulties he and your family face as a result of

> that. However, these two criteria I've given above are pretty

> significant, and I don't want the severity of the damage done to my

> child--who cannot speak, who has significant delays in cognitive

> development, who has very few self help skills, very few appropriate

> adaptive behaviours, and almost no curiosity--to be diminished

> either. And that is what I'm afraid is one of the results of not

> using the language precisely.

>

>

>

>

> Since many kids with asperger's did have delays in language

> > development, it is heavily debated as to whether or not there

> should be a separation at all

> > as asperger's is truly High Functioning Autism. No to mention, many

> kids diagnosed with

> > classic autism also had language skills before they lost it and

> some still have language

> > skills.

> >

> > And no, the discussion is not about who suffers more, but it is

> also not about the 'word'. It

> > is about parents of children with classic autism not wanting or

> accepting that children with

> > asperger's have autism.

>

>

> Children diagnosed with Asperger's have an autism spectrum disorder.

> That is very clear. There are others with an ASD who are not

> diagnosed Asperger's. Some of these kids have autistic disorder, or

> what I called in my last post full blown autism.

>

> >

> > Your post just proved the entire point. You have reduced another

> form of autism to being

> > on a level of peanut allergies, asthma and learning disabilities. I

> also believe, as you do

> > that many kids were hurt with different levels of being affected.

> But I am not here because

> > my son has a learning disability.

>

>

> I am not trying to reduce anything. And, since kids can die from

> peanut allergies and allergies, I'm not sure where you would get the

> idea that somehow it is something less. I also mentioned that kids

> get cancer from toxic insults and I doubt that the parents of my

> students who have died of cancer, or had their legs amputated to

> cancer, would think that these things are less either. I am trying

> to say that they are something different, and that sometimes, in some

> contexts, that something different is quite important.

>

>

> >

> > If a child with a higher form of autism interferes with the best

> interest of your son, then

> > hey, that's something you are going to have to deal with. There are

> people here on this

> > board who have 'recovered' children, children who are improving and

> children who are just

> > diagnosed with PDD. Are they interfereing as well? What about kids

> who have high

> > functioning autism and are indistinguishable from low functioning

> asperger's, yet carry the

> > label of autism instead?

>

> As I said, I don't think that the labels are particularly good, and I

> am fully aware that because this is a spectrum a child diagnosed with

> autism but is so-called high-functioning could easily look a lot like

> a child diagnosed with Asperger's but just barely met those

> criteria. And I never said that anyone's child is " interfering " with

> the bests interests of my son, but the results of not using the

> terminology precisely can interfere. I have given a couple examples,

> but we see these things around us all the time: look at recent posts

> about Sigourney Weaver's " inner autism " .

>

>

> >

> > Since many parents here also have more than one child diagnosed

> with different types of

> > autism, such as classic autism, PDDNOS and asperger's, should they

> only be calling the

> > one with " classic autism " their autistic child? The others don't

> fit?

> >

> > I don't think so.

> >

> > Distinguishing is fine. But please don't call it a 'problem' that a

> kid with asperger's is being

> > called 'autism' as if we parents have made this up. Our doctors

> used the word 'autism'

> > when they diagnosed our kids, just like they did when they

> diagnosed yours and kids with

> > PDDNOS.

>

> I never said or implied that you made anything up. But that does

> raise the point I am trying to make. People do feel that they can

> make up their own diagnosis now. The meanings get watered down until

> they are meaningless, and then what are we left with in the public

> eye? You may find this hard to believe, but I make this arguement as

> much for your son's sake as I do for my son's. I don't want people

> to dismiss you as whiny mom who should appreciate the Bill Gates she

> is raising. To use another analogy, what if every time a kid got

> less than 100% on a test or assignment, we started saying that kid

> had a learning disability. If this happens often enough, that

> doesn't leave the kids who have an actual learning disability with

> anything to describe (no matter how badly) what it is they're

> struggling with. So, LD has a specific meaning and it should

> continue to have one.

>

>

> >

> > Instead of considering it an interference to the best interest of

> your child, why not look at

> > it from the true perspective? There is a spectrum...an entire

> spectrum of autism...and

> > some kids are more affected than others. But they are all autistic.

> Aspergers included.

>

> Do you find it acceptable when people diagnose themselves with

> Asperger's or diagnose the dead (like Einstein) with Asperger's? Do

> you look at your kid and say, yeah, he's just like Einstein? From

> your description, I don't think so. I think if I were in your shoes

> I would be very upset that these people are taking a word and simply

> changing it to mean what they want it to mean. This is all I'm

> saying about the word that we've been given to describe kids who meet

> the DSM-IV for autistic, as opposed to other things like PDD-NOS or

> Asperger's.

>

> Anita

>

>

> >

> > Col

> >

>

[Guest guest]

I've seen kids dx'd with PDD-NOS that are worse (in terms of symptoms)

than kids dx'd with classic autism.

At Children's Hospital they'll give PDD-NOS if the psychologist feels

the parent can't " handle " hearing autism.

Discounting any child because of " severity " or the label they stick to

him/her is ridiculous.

>

> >

> > I am sorry if kids who have asperger's being called " autistic " gets

> in your way, but perhaps,

> > according to this logic, you should toss out all of the kids who

> are diagnosed with

> > PDDNOS as well. After all, they didn't meet the criteria of classic

> autism, either.

>

> I'm not sure why you're trying to imply that I want to " toss out all

> of the kids " who don't meet the criteria for classic autism. What

> I'm trying to say is that each of these terms means something

> relatively specific and that can be important within certain

> conversations. I spend an enormous amount of time helping people

> whose kids are PDD-NOS or Asperger's or ADHD because I know that

> these kids have been damaged.

>

>

> >

> > I have no problem with distinguishing between the differences, but

> not at the expense of

> > my son or anyone else's here who didn't have enough severe symptoms

> for someone else's

> > satisfaction.

>

> This is not about my satisfaction, and I don't think it is fair to

> imply that I would prefer that ANY child be more autistic. I am not

> trying to do anything at the expense of your child. My point is that

> by watering down the specific meanings of the terms we've been given,

> we can be doing it at the expense of a lot of kids. As I said, we

> can end up, as evidenced by many things we see in the media or now on

> places like youtube, with people thinking what's wrong with being

> autistic if it means you're Bill Gates or Albert Einstein?

>

>

> >

> > The diagnostic criteria between aspergers and autism are IDENTICAL

> with the exception of

> > aquiring language skills.

>

>

>

> This isn't true. Here are two of the important differences between

> full blown autism (NOT autistic spectrum disorder) and Asperger's.

> To be diagnosed Asperger's as opposed to something else, you must

> meet these two criteria:

>

> " D. There is no clinically significant general delay in language

> (e.g., single words used by age 2 years, communicative phrases used

> by age 3 years)

> E. There is no clinically significant delay in cognitive development

> or in the development of age-appropriate self-help skills, adaptive

> behavior (other than social interaction), and curiosity about the

> environment in childhood. "

>

> I am not trying to diminish the severity of the damage done to your

> child, or the difficulties he and your family face as a result of

> that. However, these two criteria I've given above are pretty

> significant, and I don't want the severity of the damage done to my

> child--who cannot speak, who has significant delays in cognitive

> development, who has very few self help skills, very few appropriate

> adaptive behaviours, and almost no curiosity--to be diminished

> either. And that is what I'm afraid is one of the results of not

> using the language precisely.

>

>

>

>

> Since many kids with asperger's did have delays in language

> > development, it is heavily debated as to whether or not there

> should be a separation at all

> > as asperger's is truly High Functioning Autism. No to mention, many

> kids diagnosed with

> > classic autism also had language skills before they lost it and

> some still have language

> > skills.

> >

> > And no, the discussion is not about who suffers more, but it is

> also not about the 'word'. It

> > is about parents of children with classic autism not wanting or

> accepting that children with

> > asperger's have autism.

>

>

> Children diagnosed with Asperger's have an autism spectrum disorder.

> That is very clear. There are others with an ASD who are not

> diagnosed Asperger's. Some of these kids have autistic disorder, or

> what I called in my last post full blown autism.

>

> >

> > Your post just proved the entire point. You have reduced another

> form of autism to being

> > on a level of peanut allergies, asthma and learning disabilities. I

> also believe, as you do

> > that many kids were hurt with different levels of being affected.

> But I am not here because

> > my son has a learning disability.

>

>

> I am not trying to reduce anything. And, since kids can die from

> peanut allergies and allergies, I'm not sure where you would get the

> idea that somehow it is something less. I also mentioned that kids

> get cancer from toxic insults and I doubt that the parents of my

> students who have died of cancer, or had their legs amputated to

> cancer, would think that these things are less either. I am trying

> to say that they are something different, and that sometimes, in some

> contexts, that something different is quite important.

>

>

> >

> > If a child with a higher form of autism interferes with the best

> interest of your son, then

> > hey, that's something you are going to have to deal with. There are

> people here on this

> > board who have 'recovered' children, children who are improving and

> children who are just

> > diagnosed with PDD. Are they interfereing as well? What about kids

> who have high

> > functioning autism and are indistinguishable from low functioning

> asperger's, yet carry the

> > label of autism instead?

>

> As I said, I don't think that the labels are particularly good, and I

> am fully aware that because this is a spectrum a child diagnosed with

> autism but is so-called high-functioning could easily look a lot like

> a child diagnosed with Asperger's but just barely met those

> criteria. And I never said that anyone's child is " interfering " with

> the bests interests of my son, but the results of not using the

> terminology precisely can interfere. I have given a couple examples,

> but we see these things around us all the time: look at recent posts

> about Sigourney Weaver's " inner autism " .

>

>

> >

> > Since many parents here also have more than one child diagnosed

> with different types of

> > autism, such as classic autism, PDDNOS and asperger's, should they

> only be calling the

> > one with " classic autism " their autistic child? The others don't

> fit?

> >

> > I don't think so.

> >

> > Distinguishing is fine. But please don't call it a 'problem' that a

> kid with asperger's is being

> > called 'autism' as if we parents have made this up. Our doctors

> used the word 'autism'

> > when they diagnosed our kids, just like they did when they

> diagnosed yours and kids with

> > PDDNOS.

>

> I never said or implied that you made anything up. But that does

> raise the point I am trying to make. People do feel that they can

> make up their own diagnosis now. The meanings get watered down until

> they are meaningless, and then what are we left with in the public

> eye? You may find this hard to believe, but I make this arguement as

> much for your son's sake as I do for my son's. I don't want people

> to dismiss you as whiny mom who should appreciate the Bill Gates she

> is raising. To use another analogy, what if every time a kid got

> less than 100% on a test or assignment, we started saying that kid

> had a learning disability. If this happens often enough, that

> doesn't leave the kids who have an actual learning disability with

> anything to describe (no matter how badly) what it is they're

> struggling with. So, LD has a specific meaning and it should

> continue to have one.

>

>

> >

> > Instead of considering it an interference to the best interest of

> your child, why not look at

> > it from the true perspective? There is a spectrum...an entire

> spectrum of autism...and

> > some kids are more affected than others. But they are all autistic.

> Aspergers included.

>

> Do you find it acceptable when people diagnose themselves with

> Asperger's or diagnose the dead (like Einstein) with Asperger's? Do

> you look at your kid and say, yeah, he's just like Einstein? From

> your description, I don't think so. I think if I were in your shoes

> I would be very upset that these people are taking a word and simply

> changing it to mean what they want it to mean. This is all I'm

> saying about the word that we've been given to describe kids who meet

> the DSM-IV for autistic, as opposed to other things like PDD-NOS or

> Asperger's.

>

> Anita

>

>

> >

> > Col

> >

>

[Guest guest]

>

> I've seen kids dx'd with PDD-NOS that are worse (in terms of symptoms)

> than kids dx'd with classic autism.

>

> At Children's Hospital they'll give PDD-NOS if the psychologist feels

> the parent can't " handle " hearing autism.

>

> Discounting any child because of " severity " or the label they stick to

> him/her is ridiculous.

>

>

In some states a dx of PDD-NOS instead of autism will screw that kid

out of a lot of services made available to the clinically disabled.

That psychologist is doing no one a favor with such mislabeling,

except for perhaps the state disabilities agency who then would have

one less " mouth to feed. "

To do effective triage, we need labels that fit the various degrees of

impairment. I think it is common short-hand to refer to anyone on

the spectrum as " autistic " . For most of the time I don't have a

problem with that. However, where I do have a problem is when some

people try to redefine all of autism as Aspergers-High-Functioning,

intentionally trying to politically disappear the severely afflicted

like my son and like the children on the AS video.

For example, some of the psuedo-advocate autistics are demanding of

AS, why doesn't AS have any autistic people on their boards or their

administration? My son gets disappeared in this. My son, who does

not functionally read or write at age 18 will not be a corporate

executive or be on any board as anything but a figurehead. These

" advocates " , with their narrow redefintion of autism, cannot and do

not represent the autistic people like my son on the low end of the

spectrum. What is the difference? These people are not clinically

disabled, my son is. They have no business pretending to represent

the disabled. And let me add again, " disability " is not a soft

literary term that can mean anything like in a poem. It has a

specific definition which includes being at high risk without profound

intervention and care. The legal definition of developmental

impairment to the point of disablity is measurable. (DSM -IV)

> Discounting any child because of " severity " or the label they stick

to him/her is ridiculous.

When one tries to equate Aspergers with clinical autism, by using the

same word for both in a political context, it is the severely disabled

who get screwed by the misrepresentation, not the " high functioning " .

My definition of " autism " does not pretend one end of the spectrum

doesn't exist for political expediency. It does for the NDers. To

advocate for Aspergers, we do not have to assert that they are the

same as the clinically disabled to do so. Likewise, to advocate for

the clinically disabled autistics, we do not need to " discount " those

on the high end of the spectrum.

I haven't heard anyone say we should downplay the needs of those

higher functioning, but only to acknowledge that they ARE higher

functioning and subsequently require a different level of care than

the clinically disabled. And more importantly, that those on the

higher end of the spectrum have a significantly different reality than

those who are measurably clinically disabled. They are far from being

indistinquishably " autistic " . The one-size-label " autistic " does not

fit all. It's ok for shorthand, but not for politics. And it is not ok

when trying to make the clincially disabled politically disappear.

Lenny

[Guest guest]

Hi Diane,

I would like to think of what we do here is public debate, not

" fighting " .

Open public debate is absolutely critical to our community right now,

more than ever. If you went to all the major research centers into

autism, and to the top political organizations claiming to represent

the autism community, you would find that they all pretty much agree

on the same agenda, that most research resources should go into

genetics, with a little window dressing look into vague environmental

factors, and even less of that, into the vaccine link.

The EOHarm list is the only public forum of its size willing to

challenge this deadly conventional wisdom.

Diane, or anyone else on this list, please tell me where real public

autism awareness is taking place on a national basis? Where are these

issues being discussed?

Where, if not here? The Autism Speaks public discussion list?

Where, if not here? The ASA public discussion list?

Where, if not here? The ARI/DAN! public discussion list?

Where, if not here? The SafeMinds/NAA public list?

Where, if not here? The TACA public list?

Where, if not here? The FEAT public list?

Where, if not here? Or perhaps the question should be

What would happen if these matters were not discussed?

Lenny

>

> I'm sorry, but ALL these kids are on the ASD spectrum! They are

> therefore all affected by " Autism " ....... again- so much fighting

> each other.....a waste of time. Spend it helping each of our kids

> and getting them what they need. This and some other discussions of

> this type are like 2 ex spouses trying to convince the other that

> each ones way of thinking is wrong and the others is right......never

> gonna happen- and in the end what does it get you a divorce.....and

> in the public eye? what does it get you? they end up saying, " see

> those parents don't even agree on things and they want us to do this

> and pass that- they are all a bunch of nuts " I for one, want all

> that thinking in the public to go away- please help! And if you

> think these people criticizing us are not tapped in to many of our

> websites- think again! Thanks.

>

>

>

[Guest guest]

Lenny, I agree with your point about public debate. I just want to

point out that it is only public though, to the 1781 members, except

when Leitch extracts quotes that he thinks are damaging that go to

his alleged 40,000 visitors per day who then get the wrong

impression.

I have no idea how many people visit my blog which alternates

between bashing ND's and discussing mercury and politics but it

usually shows up near the top when one does a google search about

neurodiverse characters which serves as some opposition to their

insanity.

I suggest more people consider blogging as a means to have our

message " out there " where it might be seen by someone other than

ourselves and the nitwits who mine our quotes out of context to try

to make us look foolish.

> >

> > I'm sorry, but ALL these kids are on the ASD spectrum! They are

> > therefore all affected by " Autism " ....... again- so much

fighting

> > each other.....a waste of time. Spend it helping each of our

kids

> > and getting them what they need. This and some other discussions

of

> > this type are like 2 ex spouses trying to convince the other that

> > each ones way of thinking is wrong and the others is

right......never

> > gonna happen- and in the end what does it get you a

divorce.....and

> > in the public eye? what does it get you? they end up

saying, " see

> > those parents don't even agree on things and they want us to do

this

> > and pass that- they are all a bunch of nuts " I for one, want all

> > that thinking in the public to go away- please help! And if you

> > think these people criticizing us are not tapped in to many of

our

> > websites- think again! Thanks.

> >

> >

> >

>

[Guest guest]

>

> I think some of the trouble lies here, in

> diagnosis. You said the child doesn't meet

> standards for classic autism if:

A child has to meet these two criteria (as well as others I didn't

list) to be diagnosed Asperger's. If not, the diagnosis will be

something else, not necessarily classic autism.

>

> " D. There is no clinically significant general

> delay in language

> (e.g., single words used by age 2 years,

> communicative phrases used

> by age 3 years)

> E. There is no clinically significant delay in

> cognitive development

> or in the development of age-appropriate

> self-help skills, adaptive

> behavior (other than social interaction) , and

> curiosity about the

> environment in childhood. "

>

> However, both of these were true for my oldest

> son, but because he speaks well now, and can

> almost pass for " normal " , the doctors I've been

> to want to say he's got Aspergers or PDD.

I'm sorry Kim but I don't understand your point. Do you mean that

the doctors want this but you don't?

Anita

>

> Kim

>

>

>

>

>

>

>

______________________________________________________________________

______________

> Looking for earth-friendly autos?

> Browse Top Cars by " Green Rating " at Autos' Green Center.

> http://autos./green_center/

>

[Guest guest]

Well, here in PA -- ASD is ASD. Doesn't matter whether you get PDD,

PDD-NOS, Autism, Aspergers.......

It's a SPECTRUM disorder. Some are on the low end, some are on the

high end, but all of them are under the same umbrella.

We'll have to agree to disagree Lenny because I'm done arguing with you.

> >

> > I've seen kids dx'd with PDD-NOS that are worse (in terms of symptoms)

> > than kids dx'd with classic autism.

> >

> > At Children's Hospital they'll give PDD-NOS if the psychologist feels

> > the parent can't " handle " hearing autism.

> >

> > Discounting any child because of " severity " or the label they stick to

> > him/her is ridiculous.

> >

> >

>

> In some states a dx of PDD-NOS instead of autism will screw that kid

> out of a lot of services made available to the clinically disabled.

> That psychologist is doing no one a favor with such mislabeling,

> except for perhaps the state disabilities agency who then would have

> one less " mouth to feed. "

>

> To do effective triage, we need labels that fit the various degrees of

> impairment. I think it is common short-hand to refer to anyone on

> the spectrum as " autistic " . For most of the time I don't have a

> problem with that. However, where I do have a problem is when some

> people try to redefine all of autism as Aspergers-High-Functioning,

> intentionally trying to politically disappear the severely afflicted

> like my son and like the children on the AS video.

>

> For example, some of the psuedo-advocate autistics are demanding of

> AS, why doesn't AS have any autistic people on their boards or their

> administration? My son gets disappeared in this. My son, who does

> not functionally read or write at age 18 will not be a corporate

> executive or be on any board as anything but a figurehead. These

> " advocates " , with their narrow redefintion of autism, cannot and do

> not represent the autistic people like my son on the low end of the

> spectrum. What is the difference? These people are not clinically

> disabled, my son is. They have no business pretending to represent

> the disabled. And let me add again, " disability " is not a soft

> literary term that can mean anything like in a poem. It has a

> specific definition which includes being at high risk without profound

> intervention and care. The legal definition of developmental

> impairment to the point of disablity is measurable. (DSM -IV)

>

> > Discounting any child because of " severity " or the label they stick

> to him/her is ridiculous.

>

> When one tries to equate Aspergers with clinical autism, by using the

> same word for both in a political context, it is the severely disabled

> who get screwed by the misrepresentation, not the " high functioning " .

> My definition of " autism " does not pretend one end of the spectrum

> doesn't exist for political expediency. It does for the NDers. To

> advocate for Aspergers, we do not have to assert that they are the

> same as the clinically disabled to do so. Likewise, to advocate for

> the clinically disabled autistics, we do not need to " discount " those

> on the high end of the spectrum.

>

> I haven't heard anyone say we should downplay the needs of those

> higher functioning, but only to acknowledge that they ARE higher

> functioning and subsequently require a different level of care than

> the clinically disabled. And more importantly, that those on the

> higher end of the spectrum have a significantly different reality than

> those who are measurably clinically disabled. They are far from being

> indistinquishably " autistic " . The one-size-label " autistic " does not

> fit all. It's ok for shorthand, but not for politics. And it is not ok

> when trying to make the clincially disabled politically disappear.

>

>

> Lenny

>

[Guest guest]

To the best of my knowledge, California is the only state the

strictly adheres to DSM-IV criteria for any state statistical

information. If PA also holds to this criteria, I would very much

like to know that.

> > >

> > > I've seen kids dx'd with PDD-NOS that are worse (in terms of

symptoms)

> > > than kids dx'd with classic autism.

> > >

> > > At Children's Hospital they'll give PDD-NOS if the psychologist

feels

> > > the parent can't " handle " hearing autism.

> > >

> > > Discounting any child because of " severity " or the label they

stick to

> > > him/her is ridiculous.

> > >

> > >

> >

> > In some states a dx of PDD-NOS instead of autism will screw that

kid

> > out of a lot of services made available to the clinically

disabled.

> > That psychologist is doing no one a favor with such mislabeling,

> > except for perhaps the state disabilities agency who then would

have

> > one less " mouth to feed. "

> >

> > To do effective triage, we need labels that fit the various

degrees of

> > impairment. I think it is common short-hand to refer to anyone

on

> > the spectrum as " autistic " . For most of the time I don't have a

> > problem with that. However, where I do have a problem is when

some

> > people try to redefine all of autism as Aspergers-High-

Functioning,

> > intentionally trying to politically disappear the severely

afflicted

> > like my son and like the children on the AS video.

> >

> > For example, some of the psuedo-advocate autistics are demanding

of

> > AS, why doesn't AS have any autistic people on their boards or

their

> > administration? My son gets disappeared in this. My son, who

does

> > not functionally read or write at age 18 will not be a corporate

> > executive or be on any board as anything but a figurehead. These

> > " advocates " , with their narrow redefintion of autism, cannot and

do

> > not represent the autistic people like my son on the low end of

the

> > spectrum. What is the difference? These people are not clinically

> > disabled, my son is. They have no business pretending to

represent

> > the disabled. And let me add again, " disability " is not a soft

> > literary term that can mean anything like in a poem. It has a

> > specific definition which includes being at high risk without

profound

> > intervention and care. The legal definition of developmental

> > impairment to the point of disablity is measurable. (DSM -IV)

> >

> > > Discounting any child because of " severity " or the label they

stick

> > to him/her is ridiculous.

> >

> > When one tries to equate Aspergers with clinical autism, by using

the

> > same word for both in a political context, it is the severely

disabled

> > who get screwed by the misrepresentation, not the " high

functioning " .

> > My definition of " autism " does not pretend one end of the

spectrum

> > doesn't exist for political expediency. It does for the NDers. To

> > advocate for Aspergers, we do not have to assert that they are the

> > same as the clinically disabled to do so. Likewise, to advocate

for

> > the clinically disabled autistics, we do not need to " discount "

those

> > on the high end of the spectrum.

> >

> > I haven't heard anyone say we should downplay the needs of those

> > higher functioning, but only to acknowledge that they ARE higher

> > functioning and subsequently require a different level of care

than

> > the clinically disabled. And more importantly, that those on the

> > higher end of the spectrum have a significantly different reality

than

> > those who are measurably clinically disabled. They are far from

being

> > indistinquishably " autistic " . The one-size-label " autistic " does

not

> > fit all. It's ok for shorthand, but not for politics. And it is

not ok

> > when trying to make the clincially disabled politically disappear.

> >

> >

> > Lenny

> >

>

[Guest guest]

Depends on what you mean by " strict. " I know our psychologists at the

center use standardized testing but mostly rely on observation and

parent comment.

The diagnosis is really subjective......it's not like there is a blood

test to say definitively your child has autism, and here's the

severity....

I can find out from our psychologists for you if you'd like. I get

the feeling, though, that it's so subjective not many follow the

DSM-IV to the letter.

> > > >

> > > > I've seen kids dx'd with PDD-NOS that are worse (in terms of

> symptoms)

> > > > than kids dx'd with classic autism.

> > > >

> > > > At Children's Hospital they'll give PDD-NOS if the psychologist

> feels

> > > > the parent can't " handle " hearing autism.

> > > >

> > > > Discounting any child because of " severity " or the label they

> stick to

> > > > him/her is ridiculous.

> > > >

> > > >

> > >

> > > In some states a dx of PDD-NOS instead of autism will screw that

> kid

> > > out of a lot of services made available to the clinically

> disabled.

> > > That psychologist is doing no one a favor with such mislabeling,

> > > except for perhaps the state disabilities agency who then would

> have

> > > one less " mouth to feed. "

> > >

> > > To do effective triage, we need labels that fit the various

> degrees of

> > > impairment. I think it is common short-hand to refer to anyone

> on

> > > the spectrum as " autistic " . For most of the time I don't have a

> > > problem with that. However, where I do have a problem is when

> some

> > > people try to redefine all of autism as Aspergers-High-

> Functioning,

> > > intentionally trying to politically disappear the severely

> afflicted

> > > like my son and like the children on the AS video.

> > >

> > > For example, some of the psuedo-advocate autistics are demanding

> of

> > > AS, why doesn't AS have any autistic people on their boards or

> their

> > > administration? My son gets disappeared in this. My son, who

> does

> > > not functionally read or write at age 18 will not be a corporate

> > > executive or be on any board as anything but a figurehead. These

> > > " advocates " , with their narrow redefintion of autism, cannot and

> do

> > > not represent the autistic people like my son on the low end of

> the

> > > spectrum. What is the difference? These people are not clinically

> > > disabled, my son is. They have no business pretending to

> represent

> > > the disabled. And let me add again, " disability " is not a soft

> > > literary term that can mean anything like in a poem. It has a

> > > specific definition which includes being at high risk without

> profound

> > > intervention and care. The legal definition of developmental

> > > impairment to the point of disablity is measurable. (DSM -IV)

> > >

> > > > Discounting any child because of " severity " or the label they

> stick

> > > to him/her is ridiculous.

> > >

> > > When one tries to equate Aspergers with clinical autism, by using

> the

> > > same word for both in a political context, it is the severely

> disabled

> > > who get screwed by the misrepresentation, not the " high

> functioning " .

> > > My definition of " autism " does not pretend one end of the

> spectrum

> > > doesn't exist for political expediency. It does for the NDers. To

> > > advocate for Aspergers, we do not have to assert that they are the

> > > same as the clinically disabled to do so. Likewise, to advocate

> for

> > > the clinically disabled autistics, we do not need to " discount "

> those

> > > on the high end of the spectrum.

> > >

> > > I haven't heard anyone say we should downplay the needs of those

> > > higher functioning, but only to acknowledge that they ARE higher

> > > functioning and subsequently require a different level of care

> than

> > > the clinically disabled. And more importantly, that those on the

> > > higher end of the spectrum have a significantly different reality

> than

> > > those who are measurably clinically disabled. They are far from

> being

> > > indistinquishably " autistic " . The one-size-label " autistic " does

> not

> > > fit all. It's ok for shorthand, but not for politics. And it is

> not ok

> > > when trying to make the clincially disabled politically disappear.

> > >

> > >

> > > Lenny

> > >

> >

>

[Guest guest]

If your state's ASD population is based on educational label rather

then actual professional diagnosis, then Pennsylvania's ASD is not

California's ASD and who knows what measuring stick PA uses, that is

the problem.

> > > > >

> > > > > I've seen kids dx'd with PDD-NOS that are worse (in terms

of

> > symptoms)

> > > > > than kids dx'd with classic autism.

> > > > >

> > > > > At Children's Hospital they'll give PDD-NOS if the

psychologist

> > feels

> > > > > the parent can't " handle " hearing autism.

> > > > >

> > > > > Discounting any child because of " severity " or the label

they

> > stick to

> > > > > him/her is ridiculous.

> > > > >

> > > > >

> > > >

> > > > In some states a dx of PDD-NOS instead of autism will screw

that

> > kid

> > > > out of a lot of services made available to the clinically

> > disabled.

> > > > That psychologist is doing no one a favor with such

mislabeling,

> > > > except for perhaps the state disabilities agency who then

would

> > have

> > > > one less " mouth to feed. "

> > > >

> > > > To do effective triage, we need labels that fit the various

> > degrees of

> > > > impairment. I think it is common short-hand to refer to

anyone

> > on

> > > > the spectrum as " autistic " . For most of the time I don't

have a

> > > > problem with that. However, where I do have a problem is

when

> > some

> > > > people try to redefine all of autism as Aspergers-High-

> > Functioning,

> > > > intentionally trying to politically disappear the severely

> > afflicted

> > > > like my son and like the children on the AS video.

> > > >

> > > > For example, some of the psuedo-advocate autistics are

demanding

> > of

> > > > AS, why doesn't AS have any autistic people on their boards

or

> > their

> > > > administration? My son gets disappeared in this. My son,

who

> > does

> > > > not functionally read or write at age 18 will not be a

corporate

> > > > executive or be on any board as anything but a figurehead.

These

> > > > " advocates " , with their narrow redefintion of autism, cannot

and

> > do

> > > > not represent the autistic people like my son on the low end

of

> > the

> > > > spectrum. What is the difference? These people are not

clinically

> > > > disabled, my son is. They have no business pretending to

> > represent

> > > > the disabled. And let me add again, " disability " is not a

soft

> > > > literary term that can mean anything like in a poem. It has a

> > > > specific definition which includes being at high risk without

> > profound

> > > > intervention and care. The legal definition of developmental

> > > > impairment to the point of disablity is measurable. (DSM -IV)

> > > >

> > > > > Discounting any child because of " severity " or the label

they

> > stick

> > > > to him/her is ridiculous.

> > > >

> > > > When one tries to equate Aspergers with clinical autism, by

using

> > the

> > > > same word for both in a political context, it is the severely

> > disabled

> > > > who get screwed by the misrepresentation, not the " high

> > functioning " .

> > > > My definition of " autism " does not pretend one end of the

> > spectrum

> > > > doesn't exist for political expediency. It does for the

NDers. To

> > > > advocate for Aspergers, we do not have to assert that they

are the

> > > > same as the clinically disabled to do so. Likewise, to

advocate

> > for

> > > > the clinically disabled autistics, we do not need

to " discount "

> > those

> > > > on the high end of the spectrum.

> > > >

> > > > I haven't heard anyone say we should downplay the needs of

those

> > > > higher functioning, but only to acknowledge that they ARE

higher

> > > > functioning and subsequently require a different level of

care

> > than

> > > > the clinically disabled. And more importantly, that those on

the

> > > > higher end of the spectrum have a significantly different

reality

> > than

> > > > those who are measurably clinically disabled. They are far

from

> > being

> > > > indistinquishably " autistic " . The one-size-label " autistic "

does

> > not

> > > > fit all. It's ok for shorthand, but not for politics. And it

is

> > not ok

> > > > when trying to make the clincially disabled politically

disappear.

> > > >

> > > >

> > > > Lenny

> > > >

> > >

> >

>

[Guest guest]

,

I agree with you that the guy that made the video is a nut and the message is a

bad one. I

have no argument with that at all.

The discussion in this thread evolved, though, to a point that it was stated

that aspergers

is not autism, is not a disability and, apparantly, is not in the best interest

of those with

full blown autism to include children with another 'label' on the autism

spectrum to be

included having autism. That is what I am objecting to.

If some idiot, nutcase self diagnosed man wants to do what this guy did, why not

attack

his agenda instead of tossing out all of the less affected children with autism

as being an

interference to the more severe getting attention and acknowledgment of their

more

profound problems?

After all, who exactly has to be convinced that classic autism is worse than

higher

functioning autism? The only people that matter...the scientists and

lawmakers...already

understand this and if they don't, it is our job to inform them of the entire

spectrum. But,

the public at large?

If Joe Shmoe doesn't 'get it' that someone's child is more severe than someone

dipicted on

television as being more high functioning, then they are never gong to 'get it'

because they

don't want to or because they are too dumb. If someone can't understand the more

profound effect of a child who does not speak compared to a child who does, then

they

are perhaps more affected than any of our kids.

But, the day that we the parents begin to toss out and choose who fits the

picture simply

because of a couple of higherfunctioning web page founders, then we really are

in trouble.

Col

> > >>

> > > I don't believe this conversation is about who is " suffering "

> more.

> > > I think it is about what words mean. ASD is not equal to

> autism.

> > > One of the problems with saying a kid with aspergers is autistic,

> or

> > > a kid with ADHD is autistic, is that eventually you have people

> > > saying that Einstein was autistic, and what the hell are these

> > > parents complaining about.

> >

> > I cannot believe this logic. The " problem " with " saying " a child

> with asperger's is autistic?

> > Are you kidding me?

> >

> > I am sorry if kids who have asperger's being called " autistic " gets

> in your way, but perhaps,

> > according to this logic, you should toss out all of the kids who

> are diagnosed with

> > PDDNOS as well. After all, they didn't meet the criteria of classic

> autism, either.

> >

> > I have no problem with distinguishing between the differences, but

> not at the expense of

> > my son or anyone else's here who didn't have enough severe symptoms

> for someone else's

> > satisfaction.

> >

> > The diagnostic criteria between aspergers and autism are IDENTICAL

> with the exception of

> > aquiring language skills. Since many kids with asperger's did have

> delays in language

> > development, it is heavily debated as to whether or not there

> should be a separation at all

> > as asperger's is truly High Functioning Autism. No to mention, many

> kids diagnosed with

> > classic autism also had language skills before they lost it and

> some still have language

> > skills.

> >

> > And no, the discussion is not about who suffers more, but it is

> also not about the 'word'. It

> > is about parents of children with classic autism not wanting or

> accepting that children with

> > asperger's have autism.

> >

> > Your post just proved the entire point. You have reduced another

> form of autism to being

> > on a level of peanut allergies, asthma and learning disabilities. I

> also believe, as you do

> > that many kids were hurt with different levels of being affected.

> But I am not here because

> > my son has a learning disability.

> >

> > If a child with a higher form of autism interferes with the best

> interest of your son, then

> > hey, that's something you are going to have to deal with. There are

> people here on this

> > board who have 'recovered' children, children who are improving and

> children who are just

> > diagnosed with PDD. Are they interfereing as well? What about kids

> who have high

> > functioning autism and are indistinguishable from low functioning

> asperger's, yet carry the

> > label of autism instead?

> >

> > Since many parents here also have more than one child diagnosed

> with different types of

> > autism, such as classic autism, PDDNOS and asperger's, should they

> only be calling the

> > one with " classic autism " their autistic child? The others don't

> fit?

> >

> > I don't think so.

> >

> > Distinguishing is fine. But please don't call it a 'problem' that a

> kid with asperger's is being

> > called 'autism' as if we parents have made this up. Our doctors

> used the word 'autism'

> > when they diagnosed our kids, just like they did when they

> diagnosed yours and kids with

> > PDDNOS.

> >

> > Instead of considering it an interference to the best interest of

> your child, why not look at

> > it from the true perspective? There is a spectrum...an entire

> spectrum of autism...and

> > some kids are more affected than others. But they are all autistic.

> Aspergers included.

> >

> > Col

> >

>

[Guest guest]

> I'm not sure why you're trying to imply that I want to " toss out all

> of the kids " who don't meet the criteria for classic autism.

I am not trying to imply anything. I am going strictly by your previous

post and words. You said, " ASD is not equal to autism. One of the

problems with saying a kid with aspergers is autistic, or a kid with

ADHD is autistic, is that eventually you have people saying that

Einstein was autistic, and what the hell are these parents complaining

about. "

We are not talking about equality here. We are not talking about who is

more severe and who isn't. We are talking about the word `autism' and

your not wanting kids with asperger's or anyone else on the spectrum

to use that word in describing their child or themselves.

Perhaps if someone can't understand what these parnets are complaining

about, you could enlighten them rather than push these kids out the door

as not being autistic because they don't directly reflect the issues your

own child has. Try true advocasy by teaching instead of trying to make

your child somehow more important in the autism fight and saying that

you advocate for a child otherwise on the spectrum in some other way.

> My point is that by watering down the specific meanings of the terms

we've been given,

> we can be doing it at the expense of a lot of kids. As I said, we

> can end up, as evidenced by many things we see in the media or now on

> places like youtube, with people thinking what's wrong with being

> autistic if it means you're Bill Gates or Albert Einstein?

You think that watering down labels like autism to include asperger's

and PDDNOS is at the expense of your child and others with classic

autism because Bill Gates and Einstein may have a form of autism?

Here's an idea...so what if they do or did? So what if some did better

than others? That does not reflect on your child or mine or anyone else's.

The only people that think that way are people you don't agree with

anyway and whom have no control over autism funding, research or laws.

The others are the people you need to focus on. And btw...thank god

there are some on the spectrum doing that well. I don't think anyone

doing that well is causing anything at the expense of any of our kids.

They are just doing well...something we would all like to see all of our

kids get to do.

Secondly, it isn't watering down anything. There is a spectrum...they

are on it...a spectrum of autism.

> To be diagnosed Asperger's as opposed to something else, you must

> meet these two criteria:

>

> " D. There is no clinically significant general delay in language

> (e.g., single words used by age 2 years, communicative phrases used

> by age 3 years)

> E. There is no clinically significant delay in cognitive development

> or in the development of age-appropriate self-help skills, adaptive

> behavior (other than social interaction), and curiosity about the

> environment in childhood. "

You are wrong about this in that this is not black and white. I have said

this several times and will say it again. Many who are severely autistic

had language skills on time. Many diagnosed with asperger's did not

have language skills but evolved into an asperger's picture, so they

carry that diagnosis.

In case you didn't know, some children actually move along the spectrum,

starting out one way and ending up another. My son is dx'd asperger's

but had a significant delay in language skills. In fact, he had no curiosity,

imagination, age-appropriate self help skills or adaptive skills, cognitive

development or other. He is not alone in asperger's with this change as

time went on. And, btw, he still has deficits in some of these areas. And

again, he is not alone.

If your child improved enough, they would also move on the spectrum

to another diagnosis that fits better. It happens all the time.

> I don't want the severity of the damage done to my

> child--who cannot speak, who has significant delays in cognitive

> development, who has very few self help skills, very few appropriate

> adaptive behaviours, and almost no curiosity--to be diminished

> either. And that is what I'm afraid is one of the results of not

> using the language precisely.

Well, your fears are unjustified. One child with high functioning autism,

asperger's, PDDNOS or recovered does not diminish your child's severity

to anyone with eyes and a brain.

You say this isn't a debate about who's child is worse off, but then you

say that you don't want the severity of your child to be diminished by a

child with a higher functioning label to use autism as a description. Perhaps

you should visit more autism organization websites and see how they are

describing, advocating and fighting for all autism spectrum disorders and

they do not separate them as one being autism and the others not being

autistic.

> I am not trying to reduce anything. And, since kids can die from

> peanut allergies and allergies, I'm not sure where you would get the

> idea that somehow it is something less.

I also am not saying that a child with peanut allergies is `less', although

as long as they avoid peanuts, they are ok. Is my kid? Is yours? Is it that

simple?

By categorizing a child with asperger's as a child with peanut allergies,

yes..you have reduced them as something to be simply managed as

easily as avoiding peanuts.

> I never said or implied that you made anything up. But that does

> raise the point I am trying to make. People do feel that they can

> make up their own diagnosis now. The meanings get watered down until

> they are meaningless, and then what are we left with in the public

> eye?

But we are not talking about people who make it up. We are talking about

children who have been diagnosed with an autism spectrum disorder other

than classic autism. This is not watering down autism nor is it making the

term autism meaningless.

>You may find this hard to believe, but I make this arguement as

> much for your son's sake as I do for my son's. I don't want people

> to dismiss you as whiny mom who should appreciate the Bill Gates she

> is raising.

ly, I don't care if people think I should appreciate Bill Gates. I DO

appreciate Bill Gates. I can only hope my son turns out that well and if

Bill Gates having aspergers or high functioning autism gives my son hope,

all the better. But, I don't worry about it if some idiot down the street

doesn't

" get it " . That person isn't going to change the course of my son's life. I focus

on the people who can make a difference. But your argument is NOT for the

sake of my son or anyone else's on the spectrum except those with classic

autism.

>To use another analogy, what if every time a kid got

> less than 100% on a test or assignment, we started saying that kid

> had a learning disability. If this happens often enough, that

> doesn't leave the kids who have an actual learning disability with

> anything to describe (no matter how badly) what it is they're

> struggling with. So, LD has a specific meaning and it should

> continue to have one.

>

I agree...and in case you didn't notice, asperger's and PDDNOS are

considered to be autism spectrum disorders. You speak of ASD as though

they are not autism unless they are classic autism. Rule number one:

There is a SPECTRUM, notably called the autism spectrum. Your child has

classic autism, which is one of the autism spectrum disorders. It does not

discount the others which are also autism spectrum disorders. You can't

have an autism spectrum disorder and it not be autism.

> Do you find it acceptable when people diagnose themselves with

> Asperger's or diagnose the dead (like Einstein) with Asperger's?

That has nothing to do with this. It is a completely separate discussion.

>This is all I'm saying about the word that we've been given to describe

kids who meet the DSM-IV for autistic, as opposed to other things like

PDD-NOS or Asperger's.

OK, well here is something to chew on, then. If PDDNOS and Asperger's

does not fit in your description of autism, then please don't use the " 1 in

every 150 kids are diagnosed with autism " statement anymore. Those

numbers include PDDNOS and Asperger's. You cannot used the kids

diagnosed with asperger's and PDDNOS to boost your arguments if you

are not willing to include them in your definition of autism.

Secondly, before you say that watering down the autism diagnosis by

including PDDNOS and asperger's kids is at the expense of a lot of kids

like your own, then perhaps you should think about what diagnosis many

advocates in the autism community have attained with their own children.

Off the top of my head, Lyn Redwood, president and co-founder of safeminds,

has a child with PDDNOS. Rita Cave Shreffler, executive director of the

National Autism Association, has a daughter with asperger's. Theresa

Wrangham of Safeminds also has a daughter with PDDNOS. and

Bono from NAA and Safeminds has a child with PDDNOS. Lugene of

No mercury and also sits on the board at A-Champ has a son with asperger's.

Has their referring to their children as having autism affected you in some

adverse way? Has their advocacy been at the expense of your child by

describing their children as autistic?

When they testify at congressional hearings or at the IOM concerning autism,

are they doing this for some other reason than their own children? Has that

diminished your child's disability that their child is on the autism spectrum

in a place other than classic autism? When they set up booths and go to

conferences like Autismone, Defeat Autism Now and others, are they

somehow compromising your child's disability because they are fighting

for autism, which they will tell you their child has? After all, their children

don't have classic autism as yours does, yet they say their child has autism.

When I set up AutismFACTS.com, did I did so for your child only and one's

like yours? Should we step out of the way and create web sites and try to raise

money for research and testify and set up booths for PDDNOS and Asperger's

instead of autism? After all, our kids don't have autism.

Should of AutismLink only set up her network for her one son and

discount her other as not being autistic because he has asperger's?

How fortunate you have been to have parents of non-autistic children fighting

for your child and ignoring their own.

Col