What? Aspergers don't suffer from opiate problem?

[Guest guest]

In a message dated 9/6/2002 4:02:15 PM Eastern Daylight Time,

cherylshimamoto@... writes:

> The

> psych that gave the dx was very specific that he was not Aspergers,

> and not PDD-NOS, but autistic at a very high functioning level.

>

I think this is where variations between diagnositicians comes in. Some will

insist that a true " asperger " diagnosis implies no disruption in language

acquisition. Others insist that it implies problems only with the semantic

pragmatic use of language. Other's insist that there can be language

processing problems/delays with Asperger's.

See where I'm leading? Anyway, in a talk I attended a few years back with

Tony Atwood, that was a question posed to him--what was the difference

between HFA and Asperger. His answer was " the spelling " , which frankly,

surprised me.

I do think what is happening in schools, however, is that many children who

are truly HFA are getting Asperger diagnoses if they are somewhat verbal

simply because it is often not recognized by school districts as fundable for

the intensive educational interventions that an HFA daignosis (299.00)

affords.

I'm not sure I made a lick of sense, but that's where I'm coming from on

this. The line between the two diagnoses is often VERY murky, and can move

around according to the state of the child's health and the success or

failure of educational interventions.

Liane

Liane Gentry Skye

<A HREF= " http://talkingwithpictures.com/ " >Talking With Pictures</A>

" nonverbal " does not have to mean " unable to communicate "

[Guest guest]

Well said !

Mandi in Uk

> I agree the a-m and this group are TONS more accepting of ideas and

> opposing POV's. I think that is why I delete most of the GFCFKids

> digests I get...anyway, I have said this once and I will say this

> again. Thank you to Devin for making products that help, and

> Kolin's pediatrician recommends, BTW. Thank you and for

> volunteering your time and energy into helping parents see the good

> that enzymes can do...

>

>

>

[Guest guest]

There is currently some interesting information on the gfcfkids

board. Someone posted the following:

" Both [her doctors] have stated the dangers of replacing a gfcf diet

with enzymes. Some children do no need the diet at all anyway.

Especially those with Aspergers. In Aspergers children, they do not

suffer from the same opiate problem as autistic children do. "

I had no idea that Asperger's kids do not have the same opiate

problem as autistic children. Surely this was not posted to explain

away why my son with Asperger's did so well with enzymes and we were

able to leave the diet. I posted my story there and this person was

unhappy with me for relaying our success. So is she saying

Asperger's kids have no peptides? Maybe I am misunderstanding this

statement.

[Guest guest]

In a message dated 9/6/2002 6:18:08 PM Eastern Daylight Time,

ckelley100@... writes:

> Regarding your nice comment, you all have no idea what has been

> put through regarding this board, and may never know. My heart goes

> out to her for all her effort. A real example for the " Altruism

> Paradox " .

My fondest prayer is that 's book becomes the best selling title on

autism. Even above mine, lol. I know I intend to do my part to see that it

does well.

Liane Gentry Skye

<A HREF= " http://talkingwithpictures.com/ " >Talking With Pictures</A>

" nonverbal " does not have to mean " unable to communicate "

[Guest guest]

Just a quickie here, and not to make a mountain out of a mole-hill,

and maybe I misinterpreted, but....

HFA & Aspegers are not the same except for the spelling. My son is a

high functioning autistic (with an HFA dx), but defintely not

aspergers as he has a history of delayed/disordered language. The

psych that gave the dx was very specific that he was not Aspergers,

and not PDD-NOS, but autistic at a very high functioning level.

Aspergers is considered high functioning on the spectrum, but that

is not the only group to get the HFA classification.

> Hmmm....According to Tony Atwood, the only difference between HFA

and

> Asperger's is the spelling. If I'm reading the post clearing,

, that

> poster is saying that Asperger's is not on the autism spectrum.

>

]

[Guest guest]

> The arguments against enzymes on that board are incredible. I

never

> in my life could have imagined such a backlash over some kids

getting

> better from plant-based enzymes (that do not cause cancer, by the

> way, as also insinuated on that board).

They are repeating phrases put forth by others who they believe to

be the " Subject Matter Experts " on all things relating to Autism. I

also enjoyed the third hand knowledge of some rather, supposed,

disturbing results.

>

>

> I've been thinking about this so much - why, why, why do people

think

> they know what is best for my child when they don't know my

child?

> Why do people insist on saying I surely make money off enzymes

just

> because I posted my son's story when specifically asked about

> enzymes? I believe, in my opinion, this never-ending

misconception

> has been fed by the ANDI newsletter by Seroussi and , neither

of

> whom ever contacted me or Devin Houston before they printed their

> enzyme warning letter. Parents have told me they think the

warning

> about enzymes letter was written to imply that and I are

> employed by Devin. I think the diet people think surely whatever

the

> ANDI people put in writing must be true, that's my opinion on the

> matter and it saddens me. I told so many people to buy their

***books***,

This is part of what I meant by following the money

trail...sometimes it leads to some interesting places. Has anyone

thought of product placement within books or Newsletters?

This is a funding source, also the newsletter...which I believe you

must pay for...anyway.

I know I must sound incredibly mean and inflamitory right now...I am

tired of seeing the same people complain about problems with the

diet then not do anything about it. Who proclaim the need for

parents to do independent research then lambast the options so the

parent only persues one avenue. I have a big problem with

hypocrisy. Even though Kolin is on the enzymes without the diet, I

also recommend both to the parent. I also recommend supplements,

ABA/AVB, chelation, Sensory issues...anything to get that parent

looking for answers.

that's how I interpret the situation and how others have told me

> it appears.

>

If I decide to try it and have success, I seriously doubt

> anyone here would find me mean and evil for moving on to something

> else. If I decide against chelation, I don't forsee that the

autism-

> mercury board people will attack me, either. What is it with some

of

> the diet people? I am just floored that it is impossible to carry

on

> a discussion there about options like I see our group or the a-m

> group do.

>

I agree the a-m and this group are TONS more accepting of ideas and

opposing POV's. I think that is why I delete most of the GFCFKids

digests I get...anyway, I have said this once and I will say this

again. Thank you to Devin for making products that help, and

Kolin's pediatrician recommends, BTW. Thank you and for

volunteering your time and energy into helping parents see the good

that enzymes can do...

[Guest guest]

Hi :

--- In @y..., " meanna_iamme " <meanna_iamme@y...> I

Has anyone

> thought of product placement within books or Newsletters?

> This is a funding source, also the newsletter...which I believe you

> must pay for...anyway.

I'm not exactly sure what you mean by the above, can you elaborate?

> I know I must sound incredibly mean and inflamitory right now...I

am

> tired of seeing the same people complain about problems with the

> diet then not do anything about it. Who proclaim the need for

> parents to do independent research then lambast the options so the

> parent only persues one avenue. I have a big problem with

> hypocrisy. Even though Kolin is on the enzymes without the diet, I

> also recommend both to the parent. I also recommend supplements,

> ABA/AVB, chelation, Sensory issues...anything to get that parent

> looking for answers.

I don't think you sound mean, but then I didn't think I sounded mean

on there and others thought I did, oh well. Well now I will take

your thought and tell more about me. I belong to a local biomedical

autism group and I would never, ever consider pushing something on

another parent, as the diet board people have insinuated I have done

there. Where in the world did I ever do that? Where is the specific

post and line where I pushed anything? I can't even imagine having

the ego to pretend I am some sort of expert on someone else's child.

When I go to the biomedical group meetings, every other parent there

has their child on the diet. One parent is slowly moving her child

off the diet with enzymes. Some other parents came and started

enzymes successfully and did not feel they needed to come back. So

the remaining group that comes regulary is almost entirely diet

people. Some are chelating, some doing FGF, some doing Pfeiffer,

some just doing the diet, almost all doing additional other

supplements. They actually asked me to come speak about enzymes at a

future meeting. I balked and said I didn't know what I could really

offer on that except tell my son's story and answer a few basic

questions and one of the members said they really wanted to hear

about enzymes from someone who did not have a money interest (meaning

me). I've been in this group for a few years, since our diet days,

so these people know me.

Thank you and for

> volunteering your time and energy into helping parents see the good

> that enzymes can do...

>

>

No, thank you for your kindness, but I have a confession to make.

Some days I really don't want to read this board and make sure

everyone's questions are answered. Then I get an email like the one

I received from someone today that said she sent my story to a mother

who cried when she read it because it was so much her son - so now

she has some hope. She is going to call me about trying enzymes.

When we started the enzymes and right before our eyes saw the changes

in our son, I told my husband, standing in the kitchen right by the

stove, I can remember it like yesterday: " If this sticks, this is

what I will do. I will help others learn about this. " That meant

for no money, no compensation, no anything. He agreed. It

did " stick " , so here I am. And in return I am repeatedly accused

either directly or in innuendo of being an enzyme seller or profiting

in some way. Yeah, I profit: My kid is better, why isn't that good

enough? Can these people not possibly conceive of someone simply

trying to do some good for others - to help others as they were

helped? I guess that is an impossible notion for some, how sad for

them.

Regarding your nice comment, you all have no idea what has been

put through regarding this board, and may never know. My heart goes

out to her for all her effort. A real example for the " Altruism

Paradox " .

[Guest guest]

>

> I'm not exactly sure what you mean by the above, can you elaborate?

Product Placement, is a way to indirectly advertise a product just

by putting into view, i.e. twister in Men In Black II. Also, by

mentioning certain vendors, while excluding others allows the

readers to think there is only one " game " in town. I do have a

question, has Brainchild been mentioned in the ANDI newsletter? I

do not know.

As it related to the money trail...who profits from parents

continuing on the diet, yes the independent companies(who charge a

good amount), those who guide through presentations and related

materials on the road of the diet, and supplement manufacturers.

I can remember it like yesterday: " If this sticks, this is

> what I will do. I will help others learn about this. " That meant

> for no money, no compensation, no anything. He agreed. It

> did " stick " , so here I am.

Sounds a bit like me, I work for a non-profit organization educating

parents about the law. Before that, I tried to disseminate

information for other military parents. Trying desperately to

inform and give parents options and hope. Something that gets taken

away from us...

>

>

> Regarding your nice comment, you all have no idea what has

been

> put through regarding this board, and may never know. My heart

goes

> out to her for all her effort. A real example for the " Altruism

> Paradox " .

You are SOOO very right, we need to have a praise day...where

her generosity of spirit and mind is given the gratitude it deserves.

I will start it...

>

>

[Guest guest]

This asperger person has always suffered from opiate problem. enzymes have

provided the first relief.

Subject: What? Aspergers don't suffer from opiate problem?

There is currently some interesting information on the gfcfkids

board. Someone posted the following:

" Both [her doctors] have stated the dangers of replacing a gfcf diet

with enzymes. Some children do no need the diet at all anyway.

Especially those with Aspergers. In Aspergers children, they do not

suffer from the same opiate problem as autistic children do. "

I had no idea that Asperger's kids do not have the same opiate

problem as autistic children. Surely this was not posted to explain

away why my son with Asperger's did so well with enzymes and we were

able to leave the diet. I posted my story there and this person was

unhappy with me for relaying our success. So is she saying

Asperger's kids have no peptides? Maybe I am misunderstanding this

statement.

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

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[Guest guest]

I just have to reply too. When my son was first diagnosed, I got

alot of help with the diet from the GFCF board, then moved on to

chelation and the A/M board which just seemed to make sense. I

missed all the initial enzyme debate because our computer was down

for nine months (it was hell, LOL!). Since my son is a patient of

Dr. Holmes, I am on the Chelating Kids board and now Pfeiffer/Aut.

since she recommended MT for him. I also came to this board recently

since I have just started enzymes with him too and have had nothing

but great responses from all of you. I recently also started

reading/posting on GFCF to tighten up our diet a bit and couldn't

help but notice the big to do. Honestly, I go to all these sites for

help or just empathy or to give help or empathy to someone else

going through what I have. I've found for me the best way to deal

with the " politics of autism " is to ignore it for the important

stuff (those posts in which people are helping others or seeking

help). And if I get flamed for anwering a question based on what has

helped my son, oh well! Nothing hurts so bad as the day my son was

diagnosed and I was told there was no hope. Well, let 'em

fight...all my energy is going to something more important...his

name is ...and I am going to prove that Doc wrong with whatever

works for him be it enzymes, diet, enzymes & diet, enzymes, no diet,

chelation etc..you get my drift....what a stupid argument

anyway...sorry, I am chelating myself too and getting carried away!

Suzanne

> Well said !

> Mandi in Uk

>

>

> > I agree the a-m and this group are TONS more accepting of ideas

and

> > opposing POV's. I think that is why I delete most of the

GFCFKids

> > digests I get...anyway, I have said this once and I will say

this

> > again. Thank you to Devin for making products that help, and

> > Kolin's pediatrician recommends, BTW. Thank you and

for

> > volunteering your time and energy into helping parents see the

good

> > that enzymes can do...

> >

> >

> >

>

>

>

>