GMA, Savage and local SD Autism mom

[Guest guest]

Hi all

Missed GMA with Beck? Its online.

http://abcnews. <http://abcnews.go.com/gma> go.com/gma

Thanks and great job Becky!

[Guest guest]

And from the " if you think that is bad " school of thought- wait till

you read this letter in response to Savage from someone who doesn't

like Savage -but it's not what you think!! Life has a funny way of

getting to people like this so no need to even attack. If the rise

continues in these disorders they may find themselves in the awkward

position of knowing you can't tell a child with autism or any of these

other disorders to just " get over it " and someone maybe one of us will

probably be supporting them saying on a grouplist online somewhere

saying " it's not your fault " I don't agree with misery loves company -

I hope that there is no more rise in these disorders and hope that

these ignorant fools don't have to go through it because that means

there's more innocent children having to go through it.

Originally Posted by mysticbeauty_nbeast

I noticed the clip from Media Matters was only just enough to peek

someone's intrest. There is nothing PC about Savage or his Savage

Nations. I don't listen to him because he reminds me of some moo-ly

from the East Coast who is trying to sound hard on certain flyaway

issues that hit the West coast media circuit. Don't kid

yourself.....it's pretty darn bad out here with the junk that gets

tossed around in our daily media.

For instance...if I had to take a wild stab in the dark where this

autism rant came from...is a bill that is being promoted by parents

with children who have a mild form of autism. They want millions of

dollars in help to educate their children in the public school

system....and the local and state governments to pay all of the medical

bills for said children until or up too the age of 18. The tax burden

would be huge on everyone. Statistically speaking....these 40 something

year old 'new' parents with these diagnosed children want to blame

vaccines for thier childs illness. Never mind it more in study lines

that parents at such an age having children for the first time

where /are more the issues in why their child has autism in the first

place. Just like down syndrome children are more likely to appear in

mothers over the age of 35; and even more likely....almost guaranteed

in woman over 40. But these parents don't want to blame themselves for

waiting to have children until such a late age. Waiting until they have

had their adult experiance first....waiting until they have made their

fortunes and can afford a nanny to help raise the little darling...as

Mommy and Daddy don't have the energy to keep up with said little

darling. Self absorbed people is what I'm talking about here. Checking

off their little life boxes.....children being the very last box on

that list.

And now, these well to do parents don't want to admit that they are

part and parcel the issue as to why their little angel is afflicted

with autism. They want tax payers and the state to pay for their poor

choices. As I said...if I had to make a stab in the dark guess...this

is the fuller context of what Mr. Savage is talking about. Which, how

is that opinion offensive to anyone unless it's true on some level?

Truth hurts people......to which I say too damn bad....grow up.....take

your lumps...take care of your own damn problems....stop looking to

your government to pick up after you.....suck it up....deal with

it.....and move on.

~Mysty

http://forums.hannity.com/showthread.php?t=746261 & page=3

=====

[Guest guest]

Regardless: His words came across hurtful. Saying kids with autism are

brats, and they act that way because they don't have dad's around to tell them

not to act like idiots. This guy is the idiot. If he had a brother with a

disability he should have known how his words would hurt others. Unless you

have

a child with autism you cannot begin to understand how it feels, it is one

thing if your child has a minor problem, that you know can be overcome,

although autism is a life long condition it can get better. People who have a

child

or a loved one with autism have every right to feel the way they do about

him. All he had to say was he thought autism was being over diagnosed, period,

there is no need to get nasty. He put his foot in his mouth big time, and is

just trying to back peddle now, too late in my opinion. Jen

>

> Thought I'd share this here since this came up:

>

> 20 audio clips of Savage's comments on Autism.

> http://www.savageonautism.com/

>

> 1. Savage says the real cases of autism need our sympathy and

> support. Listen

>

> 2. Savage says his brother was severely disabled and that

> misdiagnosis hurts the child. Listen

>

> 3. Savage says that the genuinely autistic need as much love and

> attention as we can give them. Listen

>

> 4. Savage talks about his disabled brother who died in a hospital.

> Listen

>

> 5. Savage speaks with Fournier, President of the National

> Autism Association. Listen

>

> 6. Savage interviews psychiatrist Dr. Breggin. Dr. Breggin says

> that though there are real cases of autism, those involved in the

> broadening of its diagnosis are in the pay of pharmaceutical

> companies. Breggin says Savage is correct that autism is over

> diagnosed. Listen

>

> 7. Savage speaks with Dr. Camarata of Vanderbilt University

> who has worked extensively with autistic children. He says that the

> definition of autism has been expanded too far. Listen

>

> 8. Caller is a school psychologist who works with autistic kids

> and agrees with Savage on the over diagnosis of autism and how it

> only hurts the kids who truly have the condition. Listen

>

> 9. Caller says her child was labeled autistic by school

> officials and that she was pressured to sign off on the diagnosis.

> Listen

>

> 10. Caller Tikvah is a therapist in New York City who works with

> children who says that kids are frequently labeled with autism even

> though they have other conditions because the agencies are provided

> with more funds for that diagnosis. Listen

>

> 11. Savage says his comments about autism were directed at those who

> are falsely diagnosed and that he knows what it's like to have a

> child suffer in front of his eyes. Listen

>

> 12. Savage reads from his book Healing Children Naturally where he

> cautions against the drugging of children. Listen

>

> 13. Savage mentions that UK doctors do not screen for autism because

> screening tools have not been fully validated. Listen

>

> 14. Savage says real autism is devastating, but that it's difficult

> to diagnose, such that the do not screen for it in the UK. Savage

> says that over diagnosis occurs because of the " autistic spectrum "

> and this is insulting to the truly ill. Listen

>

> 15. Caller has an autistic child and says it is too easy to

> get a child diagnosed as autistic. Savage says resources for autism

> must be reserved for children like hers. Listen

>

> 16. Savage says he has devoted his life to helping children and gives

> the context for his remarks. Listen

>

> 17. Savage criticizes doctors for recommending cholesterol drugs on

> children as young as two. Listen

>

> 18. Savage says that though people are making money from false

> diagnosis, real cases of autism deserve our sympathy and out support.

> Listen

>

> 19. Savage says many experts say that many children are falsely

> diagnosed. Listen

>

> 20. Savage says that real autism is tragic, and that a false

> diagnosis is a crime against the child. Listen

>

> STATEMENT BY TALK RADIO NETWORK

> ON MICHAEL SAVAGE'S AUTISM COMMENTS

>

> There have been numerous calls in recent days for Savage, who hosts

" The Savage Show " for Talk Radio Network (the " Network " ), to be fired or

suspended for his brief 84 seconds of commentary concerning autism during the

July 16th broadcast of the Show.

>

> Promptly after the Network's management learned of the comments in issue, the

Network commenced an investigation into the particulars and the circumstances of

those comments. This investigation began with the Network's CEO, Mark Masters,

personally contacting Dr. Savage to address the concerns and obtain an

explanation of the comments directly from Dr. Savage.

>

> In that conversation, and other subsequent conversations between Mr. Masters

and Dr. Savage, Dr. Savage explained the circumstances and intent of his

statements in considerable detail. The Network also carefully monitored

subsequent broadcasts of the Show, on Monday, July 21st and Tuesday, July 22nd,

which were devoted to the subject of autism and further explanations by Dr.

Savage of his views on the subject.

>

> Dr. Savage has clarified that his July 16th statements concerning autism were

not directed at those who are in fact challenged by this horrible affliction,

but were instead addressing efforts to broaden the concept of autism beyond

those who truly are autistic to a broader " autistic spectrum " of behavioral

symptoms which are also manifested by persons who do not suffer from autism, and

his concern that many children are being misdiagnosed as autistic due to the

subjective nature of autism diagnosis (due to the lack of known biomedical

indicators, such as blood tests, to definitively confirm or deny the actual

existence of autism). Dr. Savage has also explained his belief that there have

been efforts by certain professionals and professional organizations to expand

diagnoses of autism more broadly, for various reasons, and his concern that this

victimizes and stigmatizes children who are misdiagnosed as autistic. On

multiple other occasions Dr. Savage has expressed his concerns that other

conditions, such as ADD and ADHD, are overdiagnosed and result in improper

medication of young children, which Dr. Savage regards as abusive.

> (read entire quote at: http://www.savageonautism.com )

>

>

>

> =====

>

[Guest guest]

Thought I'd share this here since this came up:

20 audio clips of Savage's comments on Autism.

http://www.savageonautism.com/

1. Savage says the real cases of autism need our sympathy and

support. Listen

2. Savage says his brother was severely disabled and that

misdiagnosis hurts the child. Listen

3. Savage says that the genuinely autistic need as much love and

attention as we can give them. Listen

4. Savage talks about his disabled brother who died in a hospital.

Listen

5. Savage speaks with Fournier, President of the National

Autism Association. Listen

6. Savage interviews psychiatrist Dr. Breggin. Dr. Breggin says

that though there are real cases of autism, those involved in the

broadening of its diagnosis are in the pay of pharmaceutical

companies. Breggin says Savage is correct that autism is over

diagnosed. Listen

7. Savage speaks with Dr. Camarata of Vanderbilt University

who has worked extensively with autistic children. He says that the

definition of autism has been expanded too far. Listen

8. Caller is a school psychologist who works with autistic kids

and agrees with Savage on the over diagnosis of autism and how it

only hurts the kids who truly have the condition. Listen

9. Caller says her child was labeled autistic by school

officials and that she was pressured to sign off on the diagnosis.

Listen

10. Caller Tikvah is a therapist in New York City who works with

children who says that kids are frequently labeled with autism even

though they have other conditions because the agencies are provided

with more funds for that diagnosis. Listen

11. Savage says his comments about autism were directed at those who

are falsely diagnosed and that he knows what it's like to have a

child suffer in front of his eyes. Listen

12. Savage reads from his book Healing Children Naturally where he

cautions against the drugging of children. Listen

13. Savage mentions that UK doctors do not screen for autism because

screening tools have not been fully validated. Listen

14. Savage says real autism is devastating, but that it's difficult

to diagnose, such that the do not screen for it in the UK. Savage

says that over diagnosis occurs because of the " autistic spectrum "

and this is insulting to the truly ill. Listen

15. Caller has an autistic child and says it is too easy to

get a child diagnosed as autistic. Savage says resources for autism

must be reserved for children like hers. Listen

16. Savage says he has devoted his life to helping children and gives

the context for his remarks. Listen

17. Savage criticizes doctors for recommending cholesterol drugs on

children as young as two. Listen

18. Savage says that though people are making money from false

diagnosis, real cases of autism deserve our sympathy and out support.

Listen

19. Savage says many experts say that many children are falsely

diagnosed. Listen

20. Savage says that real autism is tragic, and that a false

diagnosis is a crime against the child. Listen

STATEMENT BY TALK RADIO NETWORK

ON MICHAEL SAVAGE'S AUTISM COMMENTS

There have been numerous calls in recent days for Savage, who hosts " The

Savage Show " for Talk Radio Network (the " Network " ), to be fired or

suspended for his brief 84 seconds of commentary concerning autism during the

July 16th broadcast of the Show.

Promptly after the Network's management learned of the comments in issue, the

Network commenced an investigation into the particulars and the circumstances of

those comments. This investigation began with the Network's CEO, Mark Masters,

personally contacting Dr. Savage to address the concerns and obtain an

explanation of the comments directly from Dr. Savage.

In that conversation, and other subsequent conversations between Mr. Masters and

Dr. Savage, Dr. Savage explained the circumstances and intent of his statements

in considerable detail. The Network also carefully monitored subsequent

broadcasts of the Show, on Monday, July 21st and Tuesday, July 22nd, which were

devoted to the subject of autism and further explanations by Dr. Savage of his

views on the subject.

Dr. Savage has clarified that his July 16th statements concerning autism were

not directed at those who are in fact challenged by this horrible affliction,

but were instead addressing efforts to broaden the concept of autism beyond

those who truly are autistic to a broader " autistic spectrum " of behavioral

symptoms which are also manifested by persons who do not suffer from autism, and

his concern that many children are being misdiagnosed as autistic due to the

subjective nature of autism diagnosis (due to the lack of known biomedical

indicators, such as blood tests, to definitively confirm or deny the actual

existence of autism). Dr. Savage has also explained his belief that there have

been efforts by certain professionals and professional organizations to expand

diagnoses of autism more broadly, for various reasons, and his concern that this

victimizes and stigmatizes children who are misdiagnosed as autistic. On

multiple other occasions Dr. Savage has expressed his concerns that other

conditions, such as ADD and ADHD, are overdiagnosed and result in improper

medication of young children, which Dr. Savage regards as abusive.

(read entire quote at: http://www.savageonautism.com )

=====

[Guest guest]

Savage, aka Weiner, has a PhD in nutrition and wrote a book

called " Healing Children Naturally " that coincides with a lot of what

is seen on this board.

[Guest guest]

I listened to him before and now. He is brilliant and self-destructive

and perhaps a provacatier.

[Guest guest]

Symptoms can overlap, some kids have more symptoms than others. It is very

difficult to always get the exact answer. Maybe no one really has the exact

answer. Therapy is the main thing, get help for our kids, try to do the best

that you can as a parent to help your child. People should not judge or say

they feel things are being over or under diagnosed. How do we all really know

that anyway. Some people like to act like they are experts when they are not.

A child with apraxia could have some symptoms of autism some not and vice

versus. Lets just be nice to each other and encourage each other to keep on

helping our kids. No one is an expert and no one has all the answers. j

**************Looking for a car that's sporty, fun and fits in your budget?

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[Guest guest]

How do you know if a child is diagnosed correctly or incorrectly. It is like

people want to fight with you if you say your child is autistic. It just

doesn't seem fair, why can't certain people accept it. Symptoms overlap,

children CHANGE AND GROW. Symptoms get better. Kids improve. If PDD NOS were

not

a diagnosis it wouldn't be given. I feel our child went to a very good Dr

that spent a lot of time with our son. For other people to just say he isn't

talking and he has good social skills, he must have been misdiagnosed that is

incorrect. Children on the spectrum can be social and have good relationships.

For our kids that have been diagnosed with this, for someone to just say

they were misdiagnosed is hurtful. You don't know that. Whatever the diagnosis

is the treatment is only beneficial and if you are seeing improvements in your

child that is great. I would give anything to erase this diagnosis of

Autism, but it just doesn't go away that easily. I love my son with my whole

heart

and soul, and I feel he is getting the best treatment. J

**************Looking for a car that's sporty, fun and fits in your budget?

Read reviews on AOL Autos.

(http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017

)

[Guest guest]

The sound byte quoted all over the news was in poor taste however it

doesn't appear to be his belief in full or it may have been taken

out of context. Without us hearing the entire show it would be hard

to assume. What's going on in the world of autism can get many

people angry. Children being misdiagnosed autistic, PDD, or PDD NOS

or ASD due to an ever changing and ever growing spectrum criteria

that is night and day from what the criteria was 20 years ago,

children who may or may not be misdiagnosed autistic subjected to

extreme, complex, expensive and at times dangerous treatments, and

on the traditional medicine road even children who may or may not be

misdiagnosed being treated with various medications which also have

their risks. Today if a child is social and plays appropriately with

toys and other children some parents in this group will defend the

diagnosis of autism and say that many autistic children are very

social. Today if a child is not talking yet and has sensory issues

they automatically are assumed to be PDD or PDD NOS or ASD even if

they are " just " apraxic and need appropriate speech and occupational

therapy and where ABA therapy isn't appropriate.

So if that's his point then I agree with that. Putting any child

that has any possible sign of autism on the autism spectrum or

labeling them PDD or PDD NOS does hurt both the huge amount that are

misdiagnosed autistic as well as those who really are autistic.

Of course even a misdiagnosed autistic child in most cases really has

another diagnosis. I could be wrong but most kids that throw

tantrums are not misdiagnosed as autistic just due to tantrums...and

if a child is refusing to talk vs. not being able to talk that could

be selective mutism and that needs compassion too. All children with

special needs deserve compassion and understanding -that includes

those with autism but is not limited to those with autism.

Liz I'm sure if you are saying his PhD is in nutrition and you listen

to him you must know more about him. IYO what's the truth?

=====

[Guest guest]

,

You continue to confuse antisocial and socially impaired (lacking

social skills). A person can be socially impaired while still being

sociable. If you read the diagnotic criteria for autism, it talks

about social impairment.

http://www.cdc.gov/ncbddd/autism/overview_diagnostic_criteria.htm

Sociable means " fond of the company of others " . Just because someone

enjoys being around others doesn't mean they can converse and

socialize appropriately (which is where the DSM criteria comes in to

play).

Just as I would hate to see a child incorrectly labeled, I would hate

to see a parent deny a diagnosis (and therefore not seek proper

treatment) because they consider their child to be sociable.

I urge any parent who is concerned to review the DSM criteria. If

there is any question, see a developmental pediatrician who

specializes in autism. They will do a very thorough evaluation. The

most reliable evaluations are usually found at Universities or

Children's Hospitals with large autism clinics.

>

> The sound byte quoted all over the news was in poor taste however

it

> doesn't appear to be his belief in full or it may have been taken

> out of context. Without us hearing the entire show it would be

hard

> to assume. What's going on in the world of autism can get many

> people angry. Children being misdiagnosed autistic, PDD, or PDD

NOS

> or ASD due to an ever changing and ever growing spectrum criteria

> that is night and day from what the criteria was 20 years ago,

> children who may or may not be misdiagnosed autistic subjected to

> extreme, complex, expensive and at times dangerous treatments, and

> on the traditional medicine road even children who may or may not

be

> misdiagnosed being treated with various medications which also have

> their risks. Today if a child is social and plays appropriately

with

> toys and other children some parents in this group will defend the

> diagnosis of autism and say that many autistic children are very

> social. Today if a child is not talking yet and has sensory issues

> they automatically are assumed to be PDD or PDD NOS or ASD even if

> they are " just " apraxic and need appropriate speech and

occupational

> therapy and where ABA therapy isn't appropriate.

>

> So if that's his point then I agree with that. Putting any child

> that has any possible sign of autism on the autism spectrum or

> labeling them PDD or PDD NOS does hurt both the huge amount that

are

> misdiagnosed autistic as well as those who really are autistic.

>

> Of course even a misdiagnosed autistic child in most cases really

has

> another diagnosis. I could be wrong but most kids that throw

> tantrums are not misdiagnosed as autistic just due to

tantrums...and

> if a child is refusing to talk vs. not being able to talk that

could

> be selective mutism and that needs compassion too. All children

with

> special needs deserve compassion and understanding -that includes

> those with autism but is not limited to those with autism.

>

> Liz I'm sure if you are saying his PhD is in nutrition and you

listen

> to him you must know more about him. IYO what's the truth?

>

> =====

>

[Guest guest]

on our local news they showed " autistic " children that were not

impaired from what I could see in any way in playing with each other

or with the toys. Good eye contact when they were spoken to as

well. The way they showed they were " autistic " was when the

therapist asked the child playing with the large therapy ball what

color it was he looked up and said the color- but sounded apraxic.

They said something about how the children can't communicate. That's

not autism -that's apraxia I thought! So I stopped it and reversed

it and called my husband Glenn into the room and said " Glenn who do

these kids remind you of? " and he said " Tanner " and I said " well this

is what they are calling autistic today " and he said " no way "

Also check with some of the professionals who are experts in both

autism and apraxia and get the numbers of misdiagnosed autistic

children from them -it's off the charts high -think one said 40 to

50% of the kids they see? I'll ask if I can say names.

And I know I'm probably still not getting your point. That's the

point it's so vague that perhaps I'm autistic too. I know that Glenn

probably is because he really likes long hair and I learned that was

a sign of autism from that one documentary.

=====

[Guest guest]

I cannot comment on a local news show. I also wouldn't pretend to

diagnose a child while watching a video clip a few minutes long.

Diagnosis takes hours of obervation, parent/teacher input and other

testing.

I don't doubt there is a high number of misdiagnosed children which

is why I recommend a large autism clinic for a diagnosis. People who

have experience with testing, such as the ADOS, and have teams

consisting of developmental pediatricians, SLPs, OT's and

psychologists who have seen lots of cases of autism are best equipped

to make an accurate diagnosis.

I think it would be a disservice to convince a parent their child is

fine based on your 5 minute interaction or on the basis of whether

they like other people. It should be left to the experts.

[Guest guest]

Honestly what is the point? Autism and Apraxia, among other disorders

involve brain inflammation. The point is getting the exact symptoms

right so a tailored treatment plan for the patient can be developed.

The medical community is so far from that. Pointing out the

overdiagnosis of autism, which I agree exists (as does its

underdiagnosis as says), gets us no closer to the real fix for all

kids. Neither does confusing a very real symptom difference.

[Guest guest]

of course they need experts to diagnose! I didn't say I

diagnosed the children. I said that they clearly showed eye contact,

smiled and played appropriately with each other and with the toys

from what they showed on the news and to both me and my husband they

reminded both of us of Tanner who also was shown on TV a few times at

that age (so we know how he looked on the news!) Children are still

diagnosed today by professionals and yet somehow there are too many

that are misdiagnosed today. Late talking plus sensory issues does not

equal autism -that's my point.

One of the professionals that tells me about the high number of

misdiagnosed autistic children today (vs even a few years ago) is

right here in South Florida (so many of you probably know who this

is) and she works with autistic children is very respected in the

world of autism -but also knows what apraxia is and what selective

mutism is etc. and finds it sad for the child how many are

misdiagnosed today as autistic. When I told her about the news

segment she had a very different reaction than you and was willing to

speak with the local news about the numbers of children being

misdiagnosed as autistic today. I feel bad for the Tanner's of today

who are not getting the appropriate therapy and placement due to

misdiagnosis of autism. Autism therapy doesn't help apraxia.

And as far as 5 minute video clips....the many neurologists I've

taken my (two) boys to that they do look at video tapes of the child

as part of the evaluation. They are not everything -but they are not

to be ignored either. That was the face of autism for that segment

and the face they showed was of apraxia...but who knows -maybe it

was the face of a child with a simple delay in speech!

=====

[Guest guest]

You know , I know what you mean.  Reading some stories in the media and even

some so called diagnostic criteria on some boards and websites, made me feel

like gosh, maybe she really is autistic after all!! She did have infrequent eye

contact, now much better but it is still hard to always get her to look at you

and you have to really request that she look up or she''ll just play with her

toy hands what ever--learned response i think for kids with severe speech issues

since the looking in the eye doesn't give them the same learning to speak

benefits they give to neurotypical children so they learn to not do it, there's

no incentive.  And she did line her ducks in a row, but you know, that's how

ducks swim, behind their mommy and she notices things like that. Why is that

really so abnormal when ducks do swim behind their mom? Does this and the fact

that she does not speak make her autistic?  I don't think so, but to hear some

of the reporting, it

sure would put a lot more kids in the autism category and maybe some are there

due to misdiagnoses, to get better services  or what ever. That's what the

pediatric neurologist told me after spending an hour listening to me talk and

not examining Ziana  at all because he had no toys in his office, she was bored

out of her mind and acting up and he couldn't get near her to test reflexes by

the end of that hour.  So he said without an MRI he had nothing to contribute

and in the end suggested that an autism diagnosis may get better services and

many parents opt for it. I could have strangled him. The wrong services , no

matter how frequent and how many are not appropriate, certainly not for an

apraxic child.  I'm so surprised that he as a neurologist no less couldn't get

that. And by the end everything I was bringing as proof of her normal cognitive

development --like her recognizing  the bust stop where we had been to a store

she liked when we had

been there only once, and crying and pointing to get off even though we had

never come from that direction before, he interpreted as another sign of autism

and told me his autistic brother was very much like that stuck in his routines

which he memorized with great details. But my point had been to show she was

aware of her surroundings and could make connections, think, recognize places

even from opposite directions etc.  Anyway, you get my point, once the autism

lens is on, yes, even I could pas for autistic and in denial about it with my

whole family.  But that doesn't mean some children don't improve to really

outgrow their initial  ASD diagnosis.

I found that even a well respected SLP at Stanford University no less who spent

about an hour trying to get Ziana to point to pictures (not the reason we were

there we wanted a second opinion on the apraxia diagnosis and said so

clearly)--anyway, picture pointing was something she had never done and couldn't

understand why she just couldn't get the darn things the way she was used to,

and this was during her nap time after a 3 h bus ride  no less. So that SLP felt

that apraxia was neither here nor there since my daughter wasn't saying much at

that age and especially under those circumstances, but she red flagged her for

severe developmental disorders-- and during our follow-up conversation implied

that there was " much more wrong with your daughter than just speech "  

Well, the fact is so far she is just apraxic and progressing steadily like an

apraxic child,  with the typical soft markers --slightly hypotonic tongue when

in relaxed play, minor upper lip/mouth/face sensitivities, and on and off toe

walking, but none of these by themselves would worry me--together with the

apraxia they spell a clear neurological disorder.  So of course a developmental

pediatrician who examined her and pretty much anyone who really knows autism or

spends time with Ziana under more favorable circumstances can see that she is

for the most part a typical child who cannot speak but communicates very

efficiently through other means, and is socially, emotionally fairly normal,

with an increased level of frustration due to her inability to communicate and

express herself verbally, but those too are considered normal given her lack of

speech. 

So a child like this will very often be misdiagnosed by those who do not

understand speech disorders and are just beginning to learn about autism or are

just jumping the gun which is the case of the neurologist who  I hope knows

better.  Her pediatrician on the other hand though there was absolutely nothing

wrong with her, which again was so not true when at age 2 she had less than 6

words and couldn't even say YES or anything coherent other than NO, which she

said A LOT!!  Anyone who really knows both autism and speech disorders will of

course know the distinctions but in my opinion it really is a neurological

disorder continuum and it is not the diagnosis that matters, but the treatment

that is needed, whether it be speech, OT, physical therapy, cranio-sacral,

biomed what ever combination improves the symptoms for each child.

The diagnosis matters more for insurance, school district and placement, and a

general orientation, but no diagnosis is ever written in stone and we all hope

our children will lose their diagnosis as they grow and benefit from appropriate

treatment.  That is the key.

I also think as children 's symptoms improve and some like you said no longer

present as apraxic after being on Fish Oil and vit. E, their diagnosis may

change. Kids once on the spectrum for good reason, may no longer exhibit

symptoms that characterize them as autistic, so I do think the lucky ones can

outgrow any diagnosis. Now whether that is really so, or they still have some

lingering deficits that may show up later, or impede learning etc. that is

another story. The point is, there's probably both an over diagnosis, but also

improvements that enable some kids to lose their diagnosis. And don't we all

want to get there faster!!

-All the best,

Elena--mom to Ziana who's making great progress now at almost 4; still very much

apraxic but she has come such a long way and the PRO EFA is finally helping now

that her absorption is hopefully under control.

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: GMA, Savage and local SD Autism mom

Date: Tuesday, August 5, 2008, 8:31 PM

on our local news they showed " autistic " children that were not

impaired from what I could see in any way in playing with each other

or with the toys. Good eye contact when they were spoken to as

well. The way they showed they were " autistic " was when the

therapist asked the child playing with the large therapy ball what

color it was he looked up and said the color- but sounded apraxic.

They said something about how the children can't communicate. That's

not autism -that's apraxia I thought! So I stopped it and reversed

it and called my husband Glenn into the room and said " Glenn who do

these kids remind you of? " and he said " Tanner " and I said

" well this

is what they are calling autistic today " and he said " no way "

Also check with some of the professionals who are experts in both

autism and apraxia and get the numbers of misdiagnosed autistic

children from them -it's off the charts high -think one said 40 to

50% of the kids they see? I'll ask if I can say names.

And I know I'm probably still not getting your point. That's the

point it's so vague that perhaps I'm autistic too. I know that Glenn

probably is because he really likes long hair and I learned that was

a sign of autism from that one documentary.

=====

[Guest guest]

Liz, you have such an act of getting straight to the point!  I wish I could be

as succinct as that.  Indeed, it is only the appropriateness of the treatment

that matters, the diagnosis is always in flux and hopefully something that will

be shed eventually for many if not all, provided the right treatments are

implemented.

--All the best,

Elena

From: ilizzy03 <lizlaw@...>

Subject: [ ] Re: GMA, Savage and local SD Autism mom

Date: Tuesday, August 5, 2008, 9:18 PM

Honestly what is the point? Autism and Apraxia, among other disorders

involve brain inflammation. The point is getting the exact symptoms

right so a tailored treatment plan for the patient can be developed.

The medical community is so far from that. Pointing out the

overdiagnosis of autism, which I agree exists (as does its

underdiagnosis as says), gets us no closer to the real fix for all

kids. Neither does confusing a very real symptom difference.

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

[Guest guest]

I don't mean this the wrong way but the labels are intended for the

kids to get the right treatment but what seems to happen is nobody is

curious enough to see all that is going on so the treatment given is

less than it could be despite everyone's efforts. That needs to change.

[Guest guest]

Yes..... Liz, this is a great point!

Elena, all the while reading your post, I was thinking of my personal history

with Mark who is much older. No one ever said the " A " word when he was

young.... almost as though it was taboo! And of course, he was extremely social

so this was probably not warranted however now having the link in my mind

between autism and dyspraxia as well as the inflamation, the 'gut' issues that

seem to co-exist in both conditions have enabled me to help my son as I never

have before.

By working with the gut via his diet and with the various supplements and

anti-yeast medication, he really has improved. Of course, the therapy for kids

with straight autism versus the therapy for kids with straight dyspraxia is VERY

different and this is where you absolutely need to know the correct approach to

save your child and to save time.

When Mark was little, he got his diagnosis in increments. At 2, it was an

expressive language delay, at 4, a gross motor delay, at 5, a fine motor delay

and it wasn't until he was 6.5 that he received a diagnosis of dyspaxia. By

this time, he was EONS behind his peer group and didn't seem to have a chance in

heck of catching up to them.

I understand why this is so. It is because that it is very very difficult for

the docs to diagnose the babies and toddlers in the short time frame that they

have to examine the child BUT..... I dearly wish that it hadn't taken so long to

get a diagnosis because we wasted so much darn time for him! If I had known or

even had had an inkling that at 2, his problems could/would be global, I could

have worked so much harder to get him more therapy at those precious ages.

Because his diagnosis was successive..... well.... he missed a lot of

therapeutic opportunities. So while the doctors may be diagnosing incorrectly

or there are a lot more diagnosis of PDD-NOS today then there was in our

time..... the good thing about this is that it alerts the parents with a bright

red flag.... DANGER, WILL ROBBINS! TROUBLE LURKING AHEAD! (Remember 'Lost in

Space'?) For us, we kept waiting for Mark to outgrow his little speech delay

which was basicly a pipe dream because he really had much more severe

neurodevelopmental issues then were readily apparent. Of course, he didn't out

grow his speech delay but grew into full blown dyspraxia!

In the past 2 years, we have really gone through a lot of home therapy,

addressed the diet and worked Mark with the things that you moms are doing with

the 2-4 year olds and sometimes it makes me sad that my son didn't get this type

of help when he was so young. BUT.... he is so much better now and this really

does demonstrate that it doesn't matter so much when you do it, the body and the

brain will respond to intervention. Of course, the younger the better because

the emotional aspect of having dyspraxia is very hard on the kids.

I guess my point would be that I would rather have had an incorrect diagnosis of

PDD-NOS or autism then the experience we had...... since it didn't allow me look

ahead and see what may have been coming down the road. But of course..... the

grass is always greener on the other side, isn't it?

This system is elementally imperfect..... always was and probably always will

be. Hopefully it will get better and better in time....

Janice

Mother of Mark, 13

[Guest guest]

He is a jerk. The words he spoke were cruel, mean and very hurtful. How

anyone could support him after those statements were made is beyond me. Maybe if

your child doesn't have autism it doesn't sting quite as bad. I know all the

statements he made before hand somewhere sometime ago, but then to follow up

with these last statements was mind blowing. If you listen again to the

statements he made about autism, he had such hate in his voice, his child is not

autistic how does he know. My feeling is don't comment on things you don't have

first hand experience with. Anyone who has a way of expressing himself to

the public like he does should do it in a more respectful manner. J

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[Guest guest]

At the end of the day are my standards too high? I just do not think

all ADHD, autism, apraxia, or learning delay is the same. Yes, there

needs to be codification and yes autism therapy differs from apraxia

therapy BUT it does not sound like autism therapy is advanced as it

could be. For as much money as is thrown at it you would think it would

be more targeted. Maybe this is regional or local but living in NJ,

where the numbers are high, I see a lot of kids getting the wrong

stuff.

[Guest guest]

No (your standards are not too high!)

=====

[Guest guest]

Autism is still pretty hard to figure out. Some kids respond well to certain

things others not so well, it is not a one kind of therapy fits all. With

apraxia you know what to do to help the child as far as speech therapy, etc.

with autism so many of the children's senses are involved, it is very tough.

The therapies that these kids are getting is working for some not others, not

all two kids are the same. So it may seem like a waste of money it is not. J

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[Guest guest]

I was in no way implying that apraxia is easier to treat than autism. It

just seems like parents who have children that have more than one diagnosis

especially on the spectrum get questioned. It is like their judgement about what

they are doing for their children is being questioned. If Savage had

said the same things in regards to apraxia, other parents with children who

suffer from the disorder may also be affected. What if he had said all kids

with apraxia are brats, you may come to the defense of your child too, because

we all know that is not accurate. It seems that intense speech therapy that

is consistent along with fish oil, etc seems to be a known route to help

apraxia, with autism it is not spelled out quite that clearly. I know there are

many bumps along the road for these kids too, and I suspect that the apraxia

is the reason my son is not talking and potty training as easily, I don't feel

it is due to the PDD NOS. Please don't take what I said the wrong way, I

have compassion for everyone who struggles to help their kids learn to talk.

Jen

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[Guest guest]

Apraxia is multi faceted just like autism and may parents in this

group would be upset that you believe apraxia is so simple to deal

with -it's never simple for any neurological impairment -but we have

a clue of what works and what doesn't which makes it a bit easier.

While motor planning speech therapies are the given for apraxia ABA

therapy is the given for autism -but I don't know anyone that would

say autism is easy either. Even if you have all the correct

diagnosis and therapies you need to make sure you have the right

therapists- and...for both conditions you need to address if there

are sensory or weakness or other issues. Grass is always greener I

can tell you that. When I read here over the years about children

with PDD who are talking 100% normal (since autism in itself is not a

speech impairment) and mainstreamed in elementary school it certainly

makes that road appear much easier than apraxia which is a speech

impairment. I recall when Tanner was at Summit Speech school for the

hearing impaired and deaf for preschool and how many of the " deaf "

children with cochlear implants spoke so much better than he did -

they sounded normal and I thought -those parents have it so much

easier. Of course my nephew is hearing impaired and I know that's

not an easy road at all -just may appear that way if you are

ignorant. We have strategies and therapies to help those with

apraxia - there is no cure for apraxia. It's funny your message

comes under the MS comments because it just shows anything said can

be taken wrong by people. We all have to learn not to assume.

Autism isn't easy to figure out -but neither is apraxia.

(or hearing impairments or...)

PS If it seems like a waste of money it probably is.

(you should notice progress or don't waste precious time and money!)

=====

[Guest guest]

I wouldn't say that there is no such thing in the autism world as apraxia,

my son has both and I know it. I am educated enough to know that the two are

two different things, and it is not just a word for a speech delay. Toni

Braxton may not be educated in this. Sadly, maybe too many celebrities have

children with autism and they do not recognize the apraxia, but it is not

everyone who is like this. If Savage called kids with apraxia brats it

would

cause an outrage in someone, me, I guess maybe that is not enough, but as

you know many children have this and you may be surprised how many people would

react. I understand that you say you get it, that my son has a diagnosis of

autism, but it seems like sometimes you don't get it. You cannot begin to

imagine what it is like, and I am a sensitive person, but that is not all

together a bad thing. As a child I had a stuttering problem and kids were very

mean and teased me, I guess I just am tenderhearted and I hoped my son would not

have to deal with a speech issue, little did I know he would get a double

whammy. How do you or Savage or anyone else know for sure the accurate

diagnoses that are being made? It is up to each parent and their team of

experts to figure out what is best for their own child. Why do you think so

many children are being Misdiagnosed as you say? Maybe you are not correct in

over stating the fact that EVERYONE thinks Apraxia is Autism, I don' think

that is the case. If certain individuals don't know the difference between the

two that is their problem, I do. Your opinion does not offend me, it just

saddens me that you don't understand what I am trying to say and that you don't

recognize I too have a valid opinion. I don't want to argue over this

anymore, lets just take what each other has said to heart and leave it at that.

I

understand your frustration regarding the lack of awareness with regards to

apraxia. Jen

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