Re: Another Autism Article

[Guest guest]

Count me in! Let me know who to send my share of the ad to. This is all so

incredible and but not in a good way.

Selena

[ ] Another Autism Article

Hi ,

I can't even read the next autism article. I want to take an ad out in The

New York Times with big bold letters -- STOP THE MADNESS -- Enough already.

UGH!

[Guest guest]

Carole:

Who diagnosed your son? Was it a neurologist or a developmental pediatrician?

What's the difference between mildly autistic and PDD?

I personally don't care what the " labels " are. Whatever my son is, he is. He

is my love and I want him to enjoy as much of life as possible. It gets

confusing trying to figure out what services would benefit him the most. What

services are you getting? How old is your son?

There is a difference between language delay and apraxia. The services needed

are different.

There is so much confusion about what is what. What is most important is that

we support each other and give each other ideas and opinions.

Thanks for your input. Society in general should be paying more attention to

the research, education and welfare of those children who do not go the " norm "

route in development.

Selena

[ ] Re: Another Autism Article

What are you guys trying to say???? Autism is getting too much

press? What are you nuts?

My son is apraxic and mildly autistic/PDD. I'm gonna chime in and

agree with that you guys are insulting those of us with

autistic children by trying to do anything possible so your child is

not declared autistic. My 3 year old son had many but not all of the

warning signs of autism, but now points, speaks in 2-3 words phrases

(thanks to ProEFA, yes it works for some autistic/PDD kids), will

play physically with other kids, shows physical affection and

doesn't tantrum in public. However he has weaknesses in fine and

some gross motor skills, still a severe language delay (and

echolalic). I could go to the trouble and just try to have him

labeled with global and verbal apraxia and some DSI, but whats the

point? He gets the same speech services in school as the only speech

delayed kids and gets OT and PT as well. And the teachers have the

same high expectations for him. If at some point I feel that he is no

longer on the spectrum, I'll get him re-evaluated.

You folks who have a kid who is just speech delayed should feel very

lucky... it could be worse.

As far as I'm concerned autism should get 100X more press than it

does - and yes autism cases are rising. See the California MIND

institute study that counted the number of severely autistic kids and

found the rate was increasing dramatically. That study did not

include the PDDNOS diagnosed kids!!!!! Until we stop shooting our

kids up with 21 vaccines before they are 2, its only gonna get worse.

Carole

[Guest guest]

Hi and Carole,

I saw 's message last night, and gave it some serious thought -

she makes a lot of good points. I don't think the intent of anyone

is to insult anyone on this list - we are all parents of kids with

challenges, whatever they may be, and the list is a place to express

our frustrations at what is going on with our own child. I hope that

anything I had posted didn't insult anyone, since it wasn't the

intent in any way shape or form.

My son was wrongly diagnosed with PDD-NOS. Period. If the dx had

been accurate, I would have gladly gone along with any therapy

suggested or provided by the autism organizations we were affilated

with. What I was devastated by, was not the dx itself, but the fact

that we had originally sought help because of lack of speech, and

they couldn't provide us with any speech therapy down the autism

therapy road. The focus was NOT on speech, but social

communication. My son needed intense speech therapy for his very

serious speech disorder - they offered PECS training. Necessary for

him to communicate? Sure. Would it be " appropriate " therapy for his

speech disorder? No way.

I don't think anyone here would say that they wouldn't do everything

humanly possible to help their child in any way possible, regardless

of the label, so I do think that the comment of it being the parents

fault if appropriate therapy is not obtained is a bit unfair. ,

I don't think you really meant it that way, but please understand

that the PDD-NOS dx disqualified my son from a funded program for

apraxic children - they would not accept children with the dx.

Please understand that I don't care what the label is - my son could

have purple polka dot disease and I would fight for appropriate

therapy. Throwing my son in the PDD box, when he didn't belong there

hurt him, and delayed his progress. It was NEVER about negative

feelings towards the autism label.

--- In , " cgt321 " <cgt321@j...>

wrote:

> What are you guys trying to say???? Autism is getting too much

> press? What are you nuts?

> My son is apraxic and mildly autistic/PDD. I'm gonna chime in and

> agree with that you guys are insulting those of us with

> autistic children by trying to do anything possible so your child

is

> not declared autistic. My 3 year old son had many but not all of

the

> warning signs of autism, but now points, speaks in 2-3 words

phrases

> (thanks to ProEFA, yes it works for some autistic/PDD kids), will

> play physically with other kids, shows physical affection and

> doesn't tantrum in public. However he has weaknesses in fine and

> some gross motor skills, still a severe language delay (and

> echolalic). I could go to the trouble and just try to have him

> labeled with global and verbal apraxia and some DSI, but whats the

> point? He gets the same speech services in school as the only

speech

> delayed kids and gets OT and PT as well. And the teachers have the

> same high expectations for him. If at some point I feel that he is

no

> longer on the spectrum, I'll get him re-evaluated.

> You folks who have a kid who is just speech delayed should feel

very

> lucky... it could be worse.

> As far as I'm concerned autism should get 100X more press than it

> does - and yes autism cases are rising. See the California MIND

> institute study that counted the number of severely autistic kids

and

> found the rate was increasing dramatically. That study did not

> include the PDDNOS diagnosed kids!!!!! Until we stop shooting our

> kids up with 21 vaccines before they are 2, its only gonna get

worse.

>

> Carole

[Guest guest]

Just a thought....

Betcha we all have some traits that could " fall into that spectrum " ...hey..maybe

the world is autistic????

~K

[ ] Another Autism Article

Hi ,

I can't even read the next autism article. I want to take an ad out in The

New York Times with big bold letters -- STOP THE MADNESS -- Enough already.

UGH!

[Guest guest]

I think it all goes back to label what you want but make sure our

kids get the proper therapy. I know of children who were diagnosed

PDD/NOS at young ages and are now doing great and have lost the

diagnosis.

My son's school SLP refused to aknowledge the apraxia diagnosis.

Guess what her treatment still worked. However I will add that once

he started speaking in longer sentences her therapy no longer was

effective. She didn't know how to get him over the hurdle of clearer

speech in longer utterances. Of course he did great with a one word

picture test but once he started with longer sentences those same

words were lost.

There is no one magic answer for all these kids. Some do well on the

GFCF diet, others with just Pro-efa, others may use no supplements at

all. Yet show me a child who has just gone the supplement route

without therapies and made the same progress as a child who got

speech and OT therapy as well as some of the newer none traditional

type therapies.

I say let autism get all the press it can get. Let's be realistic

apraxia is common with apraxic kids and if more press means apraxia

will be recognized as a condition then it is fine with me. If it

means more services then I say go for it. However be educated and

informed parents. Like said if ABA therapy isn't appropriate

for your child then don't get it. We are our children's best

advocates.

denise

--- In , " cgt321 " <cgt321@j...>

wrote:

> What are you guys trying to say???? Autism is getting too much

> press? What are you nuts?

[Guest guest]

Carole, The articles coming out on " autism " were not articles that

described autism -they were examples of the ever growing amounts of

poor journalism that is misinforming the public and raising the

chances of even more misdiagnosis. The one article " Signs of

Autism " were the same warning signs a child with a simple delay in

speech would exhibit. Another article referred to a child who was

diagnosed as having sensory integration dysfunction " a form of

autism " which made the mother and father " cry nonstop for 8 months " .

As most of us in this group know -sensory integration dysfunction is

a diagnosis that's typically in addition to everything else -and in

most cases is not the primary diagnosis. Out of all Tanner's

diagnosis -sensory integration dysfunction although very frustrating

and requiring much therapy -was the least of his problems in

hindsight. The hypotonia and apraxia are still in ways with him

today -while the sensory integration dysfunction is pretty much

undetectable today. ...OK well the other day he pressed the blow

drier to his head and because he liked the feel of the heat and I

was horrified that he burned his head while he didn't seem to

notice ...and he still walks past the clothes drier and touches it

and says " ahhhh " (and we live in Florida now!!!) He also however

will talk to me about it now and say " Mommy member when I was a baby

I loved to sleep on the floor near this? " Today we can discuss it,

and/or laugh about it -and he'll then go and play or do something

else.

Is sensory integration dysfunction a form of autism? If it is and

some believe Tanner autistic due to this then he is autistic. I

personally do not view sensory integration dysfunction as a form of

autism -it's an accompanying diagnosis to autism or apraxia just

like hypotonia is found in many types of disorders and syndromes.

A child or adult can have or develop sensory integration dysfunction

after an accident -and have that alone. To me to misinform the

public is hurting all the children -and there are too many

misdiagnosed children falling through the cracks already.

There needs to be awareness about autism and like awareness for any

condition -awareness needs to be accurate. There are many in this

group who have autistic or PDD children -but in this group most also

have some type of communication impairment as well -and many

diagnosed with apraxia as well. Some of our members have one child

diagnosed with autism and another with a different diagnosis, and we

all take the hand we are dealt. Problem is learning years down the

road that the diagnosis was wrong.

ProEFA helps autistic children as well as children with many other

types of communication impairments including many with rare genetic

disorders and syndromes as I already posted. (not so much those

with " severe " autism for some reason) As Dr. Agin stated for the

PBS interviewers - " the EFAs appear to be some type of cure " They

somehow help the brain rewire and children that formerly had

symptoms of a syndrome once on the right EFAs start dropping some of

the symptoms.

This again only however happens if the right formula and dosage is

used -mostly an Omega 3 with a small amount of Omega 6. In our

group with parent feedback first both with CHERAB in the US and then

what CHERAB arranged for ECHO of Canada to do the same -we saw

little to no change in any of our children on pure Omega 3 formulas -

and moderate to dramatic change on the right Omega 3 and 6 formula.

ProEFA Efalex and EyeQ are overall great formulas and you want a

dosage of about:

100 mg DHA (Omega 3)

150-250 mg EPA (Omega 3)

30-50 mg GLA (Omega 6)

Problem was that Kim was on a grouplist where apparently there are

parents of autistic children who do not have the right information

on EFAs. Nobody to tell them to go watch Lorenzo's Oil to see how

little tweaks in oil therapy make a great deal of difference at

times. Dr. Hugo Moser who led the trials for Lorenzo's Oil was a

key note speaker at our conference.

http://www.cherab.org/news/scientific.html

These parents Kim talked about are not aware that the " secret " is

all in the formula, dosage and purity of the oils -not brand name

even. They, like I did at the start -believe all fish oils are the

same -I'm convinced my Tanner today wouldn't be Tanner if it wasn't

for pushing and trying many oils (after being inspired by Lorenzo's

Oil) until I found the right oils which not only worked for my son

Tanner amazingly -but for many in this group -including you!.

If instead all of us were only in this other group -for EFAs we

today would have been misinformed. Ask yourself -where would your

child be today then?

Jeannie Buesser was told for months her oldest son Danny had a

digestion problem and was prescribed digestion aids while his little

belly kept hurting and started to puff out. One week after the

correct diagnosis of a fast growing cancer -her four year old son

was dead.

Jeannie is an Outreach Coordinator for CHERAB who's middle son Adam

has apraxia and ADHD and her youngest, Josh, is autistic.

http://www.eparent.com/welcome/momsnight.htm

Jeannie like all of us is outraged at the rising amount of

misinformation on autism. Like any condition information needs to

be accurate -and she knows painfully firsthand how misinformation on

one condition together with lack of awareness on another can hurt

worse than any of us will hopefully ever know.

=====

[Guest guest]

Selena -

My son was officially diagnosed PDDNOS with autistic tendencies by a

neurodevelopment pediatrician (thats his official title). I use

mildly autistic because people know the word autistic and consider

mild autism to be PDD. I think the official difference is that

PDDNOS is given to children who don't quite meet enough of the

official autism criteria, but are close enough to be given some

diagnosis.

My son is in special ed preschool in a mixed disabilities class, they

have no " autism " class and even if they did, his EI therapist told me

not to put him it one because my son is a good imitator of other kids

and needs good role models and would have probably copied alot of

negative behavior in an autism class. Even within the " autism " label

every child needs different therapies. My son gets discrete trial

therapy from his speech therapist 5X week and OT and PT 2X week, an

hour each time. My son is 3.

My only other comment on this whole issue is yes I agree with

that most of the autism articles contain incorrect information.

However if it gets one parent to seek help for their child, even if

he/she doesn't turn out to be autistic but rather just apraxic, its

at least doing some good. We waited until my son was past his 2nd

birthday before we got any help and I always wished we would have

gotten help when he was one and not ever babbling.

Carole

PS I spread the ProEFA info around to all of the autism boards I'm on!

In , " selelk " <selelk@w...> wrote:

> Carole:

> Who diagnosed your son? Was it a neurologist or a developmental

pediatrician? What's the difference between mildly autistic and PDD?

>

> I personally don't care what the " labels " are. Whatever my son is,

he is. He is my love and I want him to enjoy as much of life as

possible. It gets confusing trying to figure out what services would

benefit him the most. What services are you getting? How old is

your son?

> There is a difference between language delay and apraxia. The

services needed are different.

>

> There is so much confusion about what is what. What is most

important is that we support each other and give each other ideas and

opinions.

>

> Thanks for your input. Society in general should be paying more

attention to the research, education and welfare of those children

who do not go the " norm " route in development.

> Selena

[Guest guest]

We are not saying that Autism is getting too much press, but kids

that are not Autistic are being diagnosed as such.

My daughter fit almost all of the Autistic descriptions that have

been posted. She has brain damage. I did know that she was at risk

for having brain damage when she was 6 weeks old. We had a MRI and

confirmed it when she was older.

If we did not know about the brain damage, I feel pretty certain

that someone would have labeled her as Autistic and we would have

gone down the path of therapies that are not appropriate, and we

would have wasted a lot of money.

Brain damage is defintely different than Autism, and should be

treated as such.

It seems like doctors should look at symptoms and tell parents your

child could be:

1) Autistic

2) Apraxia of Speech

3) Sensory Integration Dysfunction

4) Brain Damage

(and any other things that fit the description)

After getting that kind of a diagnosis than more evaluations need to

be done.

I wouldn't label a child until all the other things have been ruled

out.

Suzi

--- In , " cgt321 " <cgt321@j...>

wrote:

> What are you guys trying to say???? Autism is getting too much

> press? What are you nuts?

> My son is apraxic and mildly autistic/PDD. I'm gonna chime in and

> agree with that you guys are insulting those of us with

> autistic children by trying to do anything possible so your child

is

> not declared autistic. My 3 year old son had many but not all of

the

> warning signs of autism, but now points, speaks in 2-3 words

phrases

> (thanks to ProEFA, yes it works for some autistic/PDD kids), will

> play physically with other kids, shows physical affection and

> doesn't tantrum in public. However he has weaknesses in fine and

> some gross motor skills, still a severe language delay (and

> echolalic). I could go to the trouble and just try to have him

> labeled with global and verbal apraxia and some DSI, but whats the

> point? He gets the same speech services in school as the only

speech

> delayed kids and gets OT and PT as well. And the teachers have the

> same high expectations for him. If at some point I feel that he is

no

> longer on the spectrum, I'll get him re-evaluated.

> You folks who have a kid who is just speech delayed should feel

very

> lucky... it could be worse.

> As far as I'm concerned autism should get 100X more press than it

> does - and yes autism cases are rising. See the California MIND

> institute study that counted the number of severely autistic kids

and

> found the rate was increasing dramatically. That study did not

> include the PDDNOS diagnosed kids!!!!! Until we stop shooting our

> kids up with 21 vaccines before they are 2, its only gonna get

worse.

>

> Carole

[Guest guest]

I have to agree. I have been insulted by some of the recent posts regarding

PDD-NOS. My son has mild PDD-NOS and moderate dyspraxia. And yes, he HAS made

excellent progress on Pro-EFAs since March 2003. He gained approximately 57

words during the month of July!!! I have a few other points. First, the

number of words alone does not determine whether or not a child is on the

spectrum. My son recently had his three year check-up and the average number of

words for a 36 month-old child is 250. My son has more than the average number

of words but he probably does not create as many complex sentences that he

should be doing at this age. Second, ABA therapy is not always a " bad " thing

if you can find the correct therapists. For example, the sessions can be used

to work with a NT peer on appropriate play and social skills. ABA can take

place for one or two hours a day if that is all that is needed. (I suggest you

read or reread " Let Me Hear Your Voice " ( Maurice) - - the children in

the book were very high functioning within two or three months of starting ABA

but continued for two years until recovery was achieved). For my son they do

not use any aversives and he does not cry during sessions. Third, being on the

autistic spectrum is no longer the " educational death sentence " that it was

just a decade ago. There are alot of children who are " recovering " and being

removed from the spectrum. Personally at this point I do not run from doctor

to doctor trying to get a different diagnosis. I have only been to one

developmental peditrician. I just work my butt off day after day so that my

son will be one of the lucky ones that are declassified.

[Guest guest]

I am sorry that my email was misinterpreted. Please note that I had

posted an earlier email on the Signs of Autism that my daughter had

all of the signs except #5 and over the last 18 months all of her

doctors (ped., neurodevelopmental ped., ped. neurologist, geneticist,

orthopaedist, SLP, OT, and PT)have clearly stated SHE IS NOT

AUSTISTIC. But according to that article, since she has those

symptoms then perhaps she has autism.

No, autism is not getting too much press. I applaud the awareness,

but what does frustrate me and what frustrated me last night as to

why I posted " Stop the Madness. Enough Already. " is the

misinformation that is being published on autism.

In college, I majored in Speech Communication with a concentration in

public relations so getting the facts right for the story are

critically important.