GMA, Savage and local SD Autism mom

August 7, 2008

There is outrage over what MS said because there is compassion for

autism and for sure people know what it is. My original point still

stands in that there is an over diagnosis of autism just like there

was an over diagnosis of ADHD and it appeared that was the attack and

not on those that really have autism.

Deb from this group used to have a really good way to deal with

people that stared at her autistic child when he acted up in

public " Please don't stare at me I'm just a child trying to deal with

my disability " Her other son used to hand them out.

You want to know the sad truth is that there is no apraxia in

the eyes of the autism world as it's all autism so in fact he did

call my son a brat too. And...if MS was to say apraxic children are

brats it wouldn't create outrage from anyone. How do I know?

Because Toni Braxton's " autistic " son who was diagnosed as apraxic

was dismissed by her on Larry King when she called apraxia a " fancy

word for a speech delay "

BRAXTON: Oh, my son Diezel is three years old now. And we found out

he was autism -- he was diagnosed, actually, last year, September, in

Vegas. We had to...

KING: What were the signs?

BRAXTON: For me, he wasn't developing like his older brother. He

wouldn't do eye contact. We took him to the doctors, the

developmental pediatricians, and they said oh, he has something

called apraxia, which is a fancy label for a speech delay.

We put him in O.T. occupational therapy and speech, everything we

needed to do. But things just weren't right. He just -- he didn't

talk. He stopped saying words. Just -- he just wasn't different than

his brother.

http://transcripts.cnn.com/TRANSCRIPTS/0703/21/lkl.01.html

There are around 400 hits if you google " Toni Braxton " and apraxia -

and none from the media- just blogs or posts from people on the net

in response to Toni saying apraxia is just a fancy word for speech

delay. Yet if you google " Savage " and autism you get

550...thousand -that's 400 hits to 550,000 hits.

Does it bother me? Yes it does that everyone thinks apraxia is

autism. It's not. I don't know Toni Braxton nor her child but I do

know many misdiagnosed apraxic children and they need a voice. And

let me make it clear that nobody will fight with you over your

child's diagnosis. If it bothers you if people question it then

that's you taking it personal. Your child is autistic -we get it.

If he's progressing in therapy that is all that matters. I'm here to

bring a voice to all those with communication impairments and that

includes autism but it not limited to just autism. Again not all

children that are not talking with sensory issues are autistic and

it's cruel to the children that are misdiagnosed as well as to those

that really have autism. If you read the defense MS says that's his

point is against misdiagnosis and in defense of those that really are

autistic. Nobody is defending an attack on autism -but some of us

are saying we need to question why there is so much misdiagnosis

because again...autism therapy is not appropriate for apraxia and can

be detrimental. In reality there are far more apraxics than

autistics -and most autistics have underlying undiagnosed speech

impairments including apraxia while the average apraxic child is not

autistic.

So while autism therapy can be detrimental to misdiagnosed as

autistic children that are really apraxic -apraxia therapy will

probably benefit many autistic children.

Jeannie Buesser who is a moderator here and who has one child with

apraxia and one child with autism is very vocal about why she does

all her outreach for apraxia- she too as the parent of a child who

has each disorder is sick of the lack of awareness about autism.

So actually I take it back -I hope that MS does call apraxia brats.

I wish it would bring apraxia into the spotlight -that would be

awesome . MS call apraxic children brats...please!!! The kids

need a voice already. (insert cricket sound here whether he does or

doesn't)

That (again) is my point. Sorry if it offends you.

=====

August 7, 2008

I can't remember if you are from Southern California or not but

just as one example I was on the phone with the mom of a child that

the school wants to classify as autistic and place him in an autistic

class to get ABA but...she's had him evaluated privately and he's

apraxic and experts say he is not at all autistic. She as the mother

doesn't see any signs of autism either. I've sent her a ton of

emails to help her to advocate and was on the phone with her for

awhile -but I'd be more than happy to share her email with you or

anyone that wants to help this child. But the thing is I post most

here because most don't feel comfortable posting and read what is posted by

others and

the advice helps many more than just those that post. The archives are

filled with with parents who did post that have children that were

misdiagnosed and each of those parents while they are all different

with different children share the same story that the therapy for

autism was a " waste of time " and/or inappropriate for their apraxic

child. To me the most profound example is 's. And don't

underestimate that Robin isn't reading this to defend why she wrote

this to put up on the CHERAB website. It's to protect those children

that are misdiagnosed.

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

Again if your child is making progress than that's all that matters.

As pro therapy as I am I wouldn't want to have Tanner in therapy that

was not needed and no way would I put him in therapy that could be

detrimental -no way. By mistake Tanner had a brief stint of ABA by

the public school and to this day it haunts me how cruel they were.

(for the archives- -the bagel story where they were " working " on

his " manipulative " behavior -Tanner never had a behavior problem -he

had apraxia -and he was punished for it -the worst side of ABA! So

that's why I'm passionate because it's children who can't speak up to

say " help " when they are in abusive situations -and treating apraxia

with behavioral therapy can lead to that)

And I know that not everyone looks at apraxia as autism...most

don't even know what apraxia is )

Here's an archvie from 2004 -but as the archive queen I can post a

ton of archives from those who have children that were hurt by

misdiagnosis of autism. It's not the name -it's the therapy the name brings

that hurts.

No doubt ABA is a necessary and wonderful therapy for those children

that require it, but again a therapy that is not necessary and

possibly detrimental to one that does not.

All your recommendations for finding a good professional are perfect

advice, however the typical newly observing parent of a newly

diagnosed child unfortunately probably would not know the difference

between a skilled vs. unskilled therapist working with their child.

If for example as we've seen posted here at times the therapist

explains away crying as a needed part of therapy, who would the

parents question when it's the professionals that recommend it? My

husband Glenn and I were in this situation when our son Tanner was

newly diagnosed.

When Tanner was three our town's school professionals thought Tanner

would benefit from behavioral approaches to get him to talk. After

all they told us, " Tanner was manipulative " . They wrote the word

manipulative over and over in his IEP -the one we refused to sign.

Why did they view Tanner as manipulative? Tanner would say a simple

sound or word once and not do it again on command which even though

is a classic sign of apraxia, they took as a sign of him being

manipulative.

His teacher one day proudly told me how they dealt with Tanner's

manipulative behavior and asked me to make sure we " followed through

at home " and not give in when Tanner was manipulative with us.

While all the other children played and then ate a bagel for snack

in front of Tanner, they left Tanner to cry on the floor instructing

all to ignore him because once he realized that nobody would give in

to his " manipulative " behavior he would realize he had to talk. Did

it work? Not at all -unless you want to count the negative

effects. They treated Tanner as if he was a selective mute who

needed behavioral approaches more than speech therapy to talk.

It was cruel of them to punish Tanner who was even at that point

diagnosed by two neurodevelopmental MDs and three speech

professionals at apraxic, with hypotonia and sensory integration

dysfunction. Poor Tanner couldn't even say " help " at that point -no

less

explain to us why he cried all day at school. As pediatric

neurologist Dr.

Trevor DeSouza wrote in a letter

to the school among other things, " it's highly inappropriate to

punish a child with a motor planning disorder. "

Tanner, who was always viewed prior by all as a sweet and happy child,

started to hate going to even his private therapists who he had

loved, and was viewed at risk for developing secondary to his

diagnosis behavioral problems from the frustration of the

inappropriate treatment he received at our town's preschool. Due to

this among other reasons, Tanner was placed through his IEP in out

of district placement at the Summit Speech School for the hearing

impaired in New Providence, NJ while still three years old where he

stayed until he transitioned into mainstream kindergarten at 6. The

educational and therapeutic approaches they use for the hearing

impaired in my opinion are far more appropriate for 'most' speech

and language impaired children then the approaches used for autistic

children. And again -many autistic children on the other hand

benefit from the approaches used on apraxic children since many have

underlying and undiagnosed speech and language impairments.

All good therapies come with rewards and praise from the

professionals. The difference is that with traditional speech and

occupational therapy the focus is on the motor planning, sensory, or

strengthening etc. therapies, ....the reward is there not to

encourage speech, but to reward hard work. Most speech and language

impaired children desperately want to be able to talk, and just

can't. They need help getting there.

If however a child with a speech and language disorder has other

issues that require ABA or modified ABA therapy, for example a child

with PDD and apraxia, then of course ABA is appropriate.

Everyone is entitled to their opinion here, so perhaps you don't

agree and are from the school of thought that in some ways that ABA

is appropriate for all. Perhaps that could be true if all had the

right ABA therapist. It is known that without any speech therapy at

all most apraxic or otherwise speech and language impaired children

will remain nonverbal or essentially nonverbal while without any ABA

therapy at all an apraxic or otherwise speech and language impaired

child can learn to overcome and be able to talk -we know many here

that have.

Years ago I would have been thrilled to know that today Tanner would

have a playdate with 2 friends and be able to communicate all his

thoughts without me or my husband there to translate. And with or

without a speech impairment -who would ever know he would have the

confidence to form a conga line at a restaurant Friday night with a

bunch of friends while dancing to the music and go up to two adults

sitting at a table dining and clearly state " Want to join us? " (He

said it slow -but very clear)

Those like Tanner's are the success stories -and we just want more

and more of them.

http://www.cherab.org/information/familiesrelate/letter.html

Some will get there with ABA alone. Some with

ABA and speech therapy. Most here will get there with

speech and occupational therapy without ABA therapy. Probably all

will get there with love, support, and multisensory approaches to

therapy together with the traditional therapy that is appropriate for

them.

The secret is knowing what therapy is and is not appropriate.

=====

August 7, 2008

first i apologize for no caps. my left arm is in a cast and i hate toh.

i'm honestly not that outraged by michael savage. his comments, yes, but in

the context of what his show is, no. have you (the collective you, not

anyone in particular) ever actually listened to his program. i have as he

was on a lot when i lived in the sf bay area and i listened to other shows

on the station he came on. sometimes he would be on when i got in the car

and i either was too lazy or barely paying attention, or something he said

grabbed me so i listened. the first time i heard him i got on the phone

with my husband to yell about it. he went on a 20 min rant about how

pathetic women are at the atm. men " do it " right, but women waste time,

etc. it was very insulting, even more so since i was in the atm line when i

heard him and was faster than the man in front of me who was doing the

things he said women do. i truly believe he is a very intelligent man, but

he has his agenda to shock and get ratings whether it is people saying this

is great or this is horrible. i think of him a bit as the political howard

stern. his schtick is to shock, outrage, get people burning mad and

passionate in either agreement or disgust. he's offended pretty much every

group out there, had his tv show canceled, etc. i've heard similar junk

spewed from lots of people on the radio from all sides of the political,

moral, intellectual, etc spectrum. savage just had a really good attention

grabbing moment here and i believe he's more intelligent than the average

ranter so he keeps it up and keeps people interested and in shock.

i'm a parent of a child with diagnoses of apraxic, language disorder and

autism. i believe my child has been misdiagnosed as autistic. in fact his

original " moderate autism " label was changed, removed by some, " redefined "

by others. those that spend more time around him (therapists, school

psychologist who tested him over a week and a half vs private psych who

tested him over 2.5 hours, teachers, etc) do not agree with the autism or

ASD label. he CLEARLY had/has apraxia in addition to a formerly severe

language delay which is also finally improving. i don't believe that

apraxia will ever been gone and we occasionally see an " apraxic moment " now,

but mostly he has resolved after lots of appropriate therapy.

as to what lisa has stated i agree that autism is being grossy over and

misdiagnosed at least in some pockets of this country. in my son's case

even after his diagnosis was removed by some professionals the team that

diagnosed him didn't remove him as a statistic. instead his diagnosis was

" clarified " so he isn't even considered a misdiagnosis by them. the same

happened to others i know who were diagnosed at the same time as my son. in

my son's case he loosely fits some of the criteria for spld which many place

on the spectrum, but he also doesn't fit a lot of that diagnosis. my hunch

is he had severe and now resolving speech and language disorders which 10 or

20 years ago would have been just that, but now is called autism by many.

even the schools who now disagree with this diagnosis classify him as ASD to

give him more services in school last year (a parapro.) in this district

his IQ is too high to have a parapro unless he has an additional issue.

autism counts. having a severely delayed language (receptive and

expressive) to the extent where he needs extra directions to understand oral

instructions doesn't. he's just supposed to " get by. " nuts.

the autistic therapies hurt him. how? in the case of one therapist he grew

frustrated to the point of depression. it wasted a lot of my time looking

for answer in the wrong places, and lastly wasted precious time doing the

therapies that were recommended by the wrong diagnosis instead of doing the

therapies that did bring results to him later.

i've been on and off some autism groups over the last five years. mostly i

haven't found much help there because my son doesn't really fit with what

other kids on the lists are going through. i am often shocked at the

outrageous statements made there. it's a " given " on one local list (the

official autism support group for the area) that apraxia and even adhd are

on the autism spectrum. the reason given for most is toxicity. well my son

isn't toxic and he wasn't vaccine damaged. the fact that he was

misdiagnosed isn't possible to many of the people on these groups because

the experts know and 1 in 150 kids does truly have autism, you know. then

they go on to say how lucky i am that he doesn't have ANY of the behavioral

issues they have to deal with. (uh yeah, maybe he doesn't have autism,

right?)

i hope i'm making sense. i'm pretty drugged out from my surgery and didn't

mean to add fuel to the fire, just another perspective. i am in no way

trying to defend savage, his comments were horrible, but after reading post

after post on all kinds of lists i'm just throwing out another view.

miche

August 8, 2008

I wish people would stop saying everyone. It is not true that everyone

thinks this..... It is a matter of opinion, one group thinks this another

thinks

that. My son has mild tendencies and he is on the spectrum, but he does have

a speech issue. Again, I will state how do you or anyone else know that

autism is being over diagnosed, maybe it is not. Autism presents itself with

many different symptoms, not just speech, I would never just assume that my son

has autism because he does not talk. I think he is getting better and some of

the original symptoms that he had when he was diagnosed are getting better,

this is a relief. No one wants to say their child has autism. I am well

aware there are other reasons why kids don't speak, believe me, if we just were

dealing with the apraxia, I would be relieved. Autism is a serious

neurological condition, why would a Mother want to just accept this diagnosis

if they

didn't feel it was accurate. I am going to be done trying to defend myself.

Everyone has their own set of beliefs regarding this. Again, it is easy to

judge when it doesn't affect your child. Thank God my son has mild symptoms and

he is as you would say on the spectrum. I am aware there is a huge

difference, classic autism is one thing, being on the spectrum is another. I

look into

the eyes of my beautiful son every day and wish he could talk. I don't

understand why this happened and sometimes I blame myself. Whether it is

apraxia,

autism, being on the spectrum, we are a family and we are trying to help our

son. He is in therapy and we are doing what we feel is best. Mom's always

take on the blame, it is no one's fault my son has apraxia, or is on the

spectrum, it is just the way it is. Let's just say you always were questioned

if

your child's diagnosis was correct. What if a Mom wanted so desperately to

help her child talk and was doing everything in her power to do this, and was

always being questioned are you sure you have the right diagnosis. I have taken

him to a qualified Dr, he has seen a qualified speech therapist, the

symptoms fit. He is getting therapy.... what else do you think I should do

then, if

obviously autism is being over diagnosed and he is not getting the right

therapy. Please just think how your generalizations of autism and over

diagnosis

and comments like there are other reasons why kids don't talk... sometimes

feel like you are talking down to a Mom who is just trying to help her son

talk. I get it, there are other reasons kids don't talk, and I get it people

feel autism is being over diagnosed, but for the people who may have the

correct

diagnosis, don't always say Everyone.

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August 8, 2008

: I don't agree with ABA at all, I don't know where you got the idea

that I did, but I think classic ABA is cruel. If I were to do this to my son he

would not enjoy it, and no I don't put my son in any therapy I think is

harmful. I am from Minnesota, and I don't know how to look up achieves. I tried

once and it said something about a password, so I just skipped it, I

didn't understand it.

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August 8, 2008

That is exactly my point, everyone researches and does what they feel is

best for their own kid, and I don't know one person that wants to say there

child has autism. There is a difference between ignoring and not doing anything

about it, and not wishing your child had a disability. I love my son, would

never want another, and I understand more than anyone that everyone is trying to

do what is best for their own child.

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August 8, 2008

I have a child with apraxia due to cerebral palsy and a nephew with pdd (autism

specturm).

I have to agree that autism is over dx and that we should acutally be saying on

the spectrum instead of autism.

My nephew is very, very mild and other than a few idiosynchracies, you would

not know he had a disability. There is a huge difference between the two.

There is so much autism awareness where we live that everyone assumes if the

child does not speak , they have autism. Perhaps that is what is going on.

There are other reasons kids don't speak.

Sharon

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Sharon Lang

From: kiddietalk <kiddietalk@...>

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

Date: Thursday, August 7, 2008, 9:05 PM

There is outrage over what MS said because there is compassion for

autism and for sure people know what it is. My original point still

stands in that there is an over diagnosis of autism just like there

was an over diagnosis of ADHD and it appeared that was the attack and

not on those that really have autism.

Deb from this group used to have a really good way to deal with

people that stared at her autistic child when he acted up in

public " Please don't stare at me I'm just a child trying to deal with

my disability " Her other son used to hand them out.

You want to know the sad truth is that there is no apraxia in

the eyes of the autism world as it's all autism so in fact he did

call my son a brat too. And...if MS was to say apraxic children are

brats it wouldn't create outrage from anyone. How do I know?

Because Toni Braxton's " autistic " son who was diagnosed as apraxic

was dismissed by her on Larry King when she called apraxia a " fancy

word for a speech delay "

BRAXTON: Oh, my son Diezel is three years old now. And we found out

he was autism -- he was diagnosed, actually, last year, September, in

Vegas. We had to...

KING: What were the signs?

BRAXTON: For me, he wasn't developing like his older brother. He

wouldn't do eye contact. We took him to the doctors, the

developmental pediatricians, and they said oh, he has something

called apraxia, which is a fancy label for a speech delay.

We put him in O.T. occupational therapy and speech, everything we

needed to do. But things just weren't right. He just -- he didn't

talk. He stopped saying words. Just -- he just wasn't different than

his brother.

http://transcripts. cnn.com/TRANSCRI PTS/0703/ 21/lkl.01. html