Re: SOCIAL PROBLEMS..

[Guest guest]

Getting the appropriate diagnosis is crucial to getting an accurate

picture of a child's cognitive ability, in my opinion. Without a dx of

a speech disorder, it is so easy for people to dismiss speech disordered

children as autistic or MR, it really is. During part 1 of 's

neurodevelopmental evaluation by 2 psychologists (who were great, BTW),

Ally was found not to be on the spectrum but possibly globally delayed

(they did not do cognitive testing). We KNEW that wasn't true. Later,

was found to have apraxia. When we went to part 2 of her

neurodevelopmental eval with our Developmental Pediatrician, she pegged

it in 10 minutes. She said " was where she should be "

cognitively and confirmed the speech disorder. When she has her

preschool testing, it was formally shown that is very bright

with a speech disorder. We knew this but were just glad that, in the

end, 's true abilities were revealed. Unfortunately, for many,

this is not the case and such evaluations get totally mishandled.

________________________________

From:

[mailto: ] On Behalf Of

Grassia

Sent: Saturday, June 24, 2006 5:23 PM

Subject: RE: [ ] Re: SOCIAL PROBLEMS..

>It seems as if apraxic/speech delayed children are routinely suspected

>of autism nowadays. We went through the scare of our lives almost a

>year ago with an inaccurate suspicion of autism. Although I am glad

>that we had the evaluation experience now, it put our family through a

>several month period of unwarranted anger, sadness and worry. It is not

>that I disagree with kids being evaluated; it is just that it seems

like

>almost the majority of kids with speech delays are now " suspected " (and

>some, sadly, misdiagnosed with) autism.

Like my son. They went looking for autism and found it. Some of the

therapies they did hurt him and the label definitely kept him from

getting

appropriate help. I'm angered again after reading his initial eval at 23

mo. yesterday when I was doing filing. Proof on paper that he made no

progress in 2 years of EI. With the autism label no one wanted to search

for another reason that speech therapy wasn't working - it was obviously

the regression issue because of the autism and wow, we were so lucky

that

we caught it at 2 because we were able to hold off further

regression. Gee, thanks! Then explain why when we dropped all autism

therapies and cut down to only 2 hours of speech a week with Prompt he's

suddenly making progress! Now we're not letting the same thing happen

with MR. The schools are going to test him with a verbal IQ test over my

dead body!!! We are not even pursuing help from the public schools next

year because (at this time) I refuse to allow him to be tested until he

gains more speech and language and they are willing to test him

non-verbally.

Those that have good and professional professionals be very thankful for

them!

Miche

[Guest guest]

I've met a lot of parents with children who incorrectly did not get

the autism spectrum diagnosis when they were young (only to get it

once the child was school-age), but I've yet to actually meet a parent

whose child received an incorrect ASD diagnosis. An experienced

well-trained professional (this rules out speech paths, OTs,

pediatricians, who are not qualified to dx) should have no difficulty

in telling the difference in language delay/apraxia and autism. I

think it's a much bigger problem that parents are NOT given the autism

dx when it is appropriate - this is how kids lose their chance for

early intervention.

As painful as it is to go through the eval process, and even more

painful to get the autism dx, the alternative is to have children who

do not get diagnosed accurately and lose out on appropriate

intervention. There are plenty of bitter parents out there who were

told to " wait and see " or " he'll grow out of it " , only to have a child

who is still non-verbal but might have talked if they had started ABA

at 2 or 3 instead of 4-5 years. It's always better to know what's

going on at a young age. I encourage everyone to find a good

diagnostician and find out what's really up with the child.

>

> Getting the appropriate diagnosis is crucial to getting an accurate

> picture of a child's cognitive ability, in my opinion. Without a dx of

> a speech disorder, it is so easy for people to dismiss speech disordered

> children as autistic or MR, it really is. During part 1 of 's

> neurodevelopmental evaluation by 2 psychologists (who were great, BTW),

> Ally was found not to be on the spectrum but possibly globally delayed

> (they did not do cognitive testing). We KNEW that wasn't true. Later,

> was found to have apraxia. When we went to part 2 of her

> neurodevelopmental eval with our Developmental Pediatrician, she pegged

> it in 10 minutes. She said " was where she should be "

> cognitively and confirmed the speech disorder. When she has her

> preschool testing, it was formally shown that is very bright

> with a speech disorder. We knew this but were just glad that, in the

> end, 's true abilities were revealed. Unfortunately, for many,

> this is not the case and such evaluations get totally mishandled.

>

> ________________________________

>

> From:

> [mailto: ] On Behalf Of

> Grassia

> Sent: Saturday, June 24, 2006 5:23 PM

>

> Subject: RE: [ ] Re: SOCIAL PROBLEMS..

>

>

>

>

> >It seems as if apraxic/speech delayed children are routinely suspected

> >of autism nowadays. We went through the scare of our lives almost a

> >year ago with an inaccurate suspicion of autism. Although I am glad

> >that we had the evaluation experience now, it put our family through a

> >several month period of unwarranted anger, sadness and worry. It is not

> >that I disagree with kids being evaluated; it is just that it seems

> like

> >almost the majority of kids with speech delays are now " suspected " (and

> >some, sadly, misdiagnosed with) autism.

>

> Like my son. They went looking for autism and found it. Some of the

> therapies they did hurt him and the label definitely kept him from

> getting

> appropriate help. I'm angered again after reading his initial eval at 23

>

> mo. yesterday when I was doing filing. Proof on paper that he made no

> progress in 2 years of EI. With the autism label no one wanted to search

>

> for another reason that speech therapy wasn't working - it was obviously

>

> the regression issue because of the autism and wow, we were so lucky

> that

> we caught it at 2 because we were able to hold off further

> regression. Gee, thanks! Then explain why when we dropped all autism

> therapies and cut down to only 2 hours of speech a week with Prompt he's

>

> suddenly making progress! Now we're not letting the same thing happen

>

> with MR. The schools are going to test him with a verbal IQ test over my

>

> dead body!!! We are not even pursuing help from the public schools next

> year because (at this time) I refuse to allow him to be tested until he

> gains more speech and language and they are willing to test him

> non-verbally.

>

> Those that have good and professional professionals be very thankful for

> them!

>

> Miche

>

>

>

>

>

>

>

[Guest guest]

I have heard of LOTS of kids who were misdiagnosed with ASD because of a

speech disorder. However, misdiagnosis or lack of doagnosis when there

should be one are both problematic. A very competant Developmental

Pediatrician or Neurologist can be your best friend in helping to overt

these possibilities, I agree.

________________________________

From:

[mailto: ] On Behalf Of maryebe

Sent: Monday, June 26, 2006 10:49 AM

Subject: [ ] Re: SOCIAL PROBLEMS..

I've met a lot of parents with children who incorrectly did not get

the autism spectrum diagnosis when they were young (only to get it

once the child was school-age), but I've yet to actually meet a parent

whose child received an incorrect ASD diagnosis. An experienced

well-trained professional (this rules out speech paths, OTs,

pediatricians, who are not qualified to dx) should have no difficulty

in telling the difference in language delay/apraxia and autism. I

think it's a much bigger problem that parents are NOT given the autism

dx when it is appropriate - this is how kids lose their chance for

early intervention.

As painful as it is to go through the eval process, and even more

painful to get the autism dx, the alternative is to have children who

do not get diagnosed accurately and lose out on appropriate

intervention. There are plenty of bitter parents out there who were

told to " wait and see " or " he'll grow out of it " , only to have a child

who is still non-verbal but might have talked if they had started ABA

at 2 or 3 instead of 4-5 years. It's always better to know what's

going on at a young age. I encourage everyone to find a good

diagnostician and find out what's really up with the child.

>

> Getting the appropriate diagnosis is crucial to getting an accurate

> picture of a child's cognitive ability, in my opinion. Without a dx of

> a speech disorder, it is so easy for people to dismiss speech

disordered

> children as autistic or MR, it really is. During part 1 of 's

> neurodevelopmental evaluation by 2 psychologists (who were great,

BTW),

> Ally was found not to be on the spectrum but possibly globally delayed

> (they did not do cognitive testing). We KNEW that wasn't true. Later,

> was found to have apraxia. When we went to part 2 of her

> neurodevelopmental eval with our Developmental Pediatrician, she

pegged

> it in 10 minutes. She said " was where she should be "

> cognitively and confirmed the speech disorder. When she has her

> preschool testing, it was formally shown that is very bright

> with a speech disorder. We knew this but were just glad that, in the

> end, 's true abilities were revealed. Unfortunately, for many,

> this is not the case and such evaluations get totally mishandled.

>

> ________________________________

>

> From:

<mailto: %40>

> [mailto:

<mailto: %40> ] On Behalf Of

> Grassia

> Sent: Saturday, June 24, 2006 5:23 PM

>

<mailto: %40>

> Subject: RE: [ ] Re: SOCIAL PROBLEMS..

>

>

>

>

> >It seems as if apraxic/speech delayed children are routinely

suspected

> >of autism nowadays. We went through the scare of our lives almost a

> >year ago with an inaccurate suspicion of autism. Although I am glad

> >that we had the evaluation experience now, it put our family through

a

> >several month period of unwarranted anger, sadness and worry. It is

not

> >that I disagree with kids being evaluated; it is just that it seems

> like

> >almost the majority of kids with speech delays are now " suspected "

(and

> >some, sadly, misdiagnosed with) autism.

>

> Like my son. They went looking for autism and found it. Some of the

> therapies they did hurt him and the label definitely kept him from

> getting

> appropriate help. I'm angered again after reading his initial eval at

23

>

> mo. yesterday when I was doing filing. Proof on paper that he made no

> progress in 2 years of EI. With the autism label no one wanted to

search

>

> for another reason that speech therapy wasn't working - it was

obviously

>

> the regression issue because of the autism and wow, we were so lucky

> that

> we caught it at 2 because we were able to hold off further

> regression. Gee, thanks! Then explain why when we dropped all autism

> therapies and cut down to only 2 hours of speech a week with Prompt

he's

>

> suddenly making progress! Now we're not letting the same thing

happen

>

> with MR. The schools are going to test him with a verbal IQ test over

my

>

> dead body!!! We are not even pursuing help from the public schools

next

> year because (at this time) I refuse to allow him to be tested until

he

> gains more speech and language and they are willing to test him

> non-verbally.

>

> Those that have good and professional professionals be very thankful

for

> them!

>

> Miche

>

>

>

>

>

>

>

[Guest guest]

Hello

Can I just check - did you really mean to say

" ABA.... is that the one where they tie the kid to the chair and

make

> them point instead of talk? I call that abusive . It is not for

> those childrne who are not autistic. THey will regress not

progress. "

As someone who had an autistic/apraxic child but who never actually

did ABA can i just say that I find that paragraph extraordinary. Both

in terms of the assumptions it makes about any parents choosing for

their kids. And also for the the fact that the moderator let that

swing by...

Goodness , when I think of a couple of things of mine that have been

questioned I am now confused as to where the flamming line is .....

Deborah

>

>

> My input on this again,

>

>

>

> > I've met a lot of parents with children who incorrectly did not

get

> > the autism spectrum diagnosis when they were young (only to get it

> > once the child was school-age)

>

>

> Hi, getting an autism diagnosis from a school doesn't mean it was

> done correctly or is even accurate ./.. ,but I've yet to actually

meet a parent

>

>

> > whose child received an incorrect ASD diagnosis.

>

>

>

> I have met many with incorrect ASD diangoses ...

>

>

>

> > An experienced

> > well-trained professional (this rules out speech paths, OTs,

> > pediatricians, who are not qualified to dx) should have no

> >difficulty in telling the difference in language delay/apraxia and

>autism.

>

>

> do they also know about language delay and language disorders ? Do

> they know how to evaluate correctly ? Do they give the non verbal

> cognitive test versus the verbal one?

>

>

>

> > I think it's a much bigger problem that parents are NOT given the

> >autism dx when it is appropriate - this is how kids lose their

>chance for early intervention. As painful as it is to go through

>the eval process, and even more painful to get the autism dx, the

>alternative is to have children who do not get diagnosed

>accurately and lose out on appropriate intervention.

>

>

> I do agree with this, however, sometimes the intervention is the

> wrong one . And sometimes when it is truly identified as autism ,

> the child is getting the same intervention as the kid who has

> apraxia or langauge delay or disorder.. and that's not fair to the

> autistic child who needs different intervention ....

>

>

> >There are plenty of bitter parents out there who were

> > told to " wait and see " or " he'll grow out of it " , only to have a

> >child who is still non-verbal but might have talked if they had

>started ABA at 2 or 3 instead of 4-5 years.

>

>

>

> ABA.... is that the one where they tie the kid to the chair and make

> them point instead of talk? I call that abusive . It is not for

> those childrne who are not autistic. THey will regress not progress.

>

>

>

> >It's always better to know what's

> > going on at a young age. I encourage everyone to find a good

> > diagnostician and find out what's really up with the child.

>

>

>

> A good one . I agree.

>

> Tina

>

[Guest guest]

I would definitely not rely on a school district to provide an

accurate diagnosis. Talk to parents - who have children with and

without an ASD dx, apraxia dx, etc - and ask who diagnosed their child

and what they thought of the neurologist/dev

pediatrician/neuropsychologist (no other professional should be

considered in my opinion). Of course you should only go to someone who

is well-trained and experienced.

ABA has nothing to do with abuse. I've done ABA with both my kids, and

I would NEVER tie my child to a chair or treat them without respect.

Your information about ABA is incorrect. Before you slam ABA, please

make sure you know what it is - this is the only proven therapy for

autism. Speech therapists in particular tend to dislike ABA and give

out inaccurate info about it (at least in my experience), so please do

your own research.

>

> My input on this again,

>

>

>

> > I've met a lot of parents with children who incorrectly did not get

> > the autism spectrum diagnosis when they were young (only to get it

> > once the child was school-age)

>

>

> Hi, getting an autism diagnosis from a school doesn't mean it was

> done correctly or is even accurate ./.. ,but I've yet to actually

meet a parent

>

>

> > whose child received an incorrect ASD diagnosis.

>

>

>

> I have met many with incorrect ASD diangoses ...

>

>

>

> > An experienced

> > well-trained professional (this rules out speech paths, OTs,

> > pediatricians, who are not qualified to dx) should have no

> >difficulty in telling the difference in language delay/apraxia and

>autism.

>

>

> do they also know about language delay and language disorders ? Do

> they know how to evaluate correctly ? Do they give the non verbal

> cognitive test versus the verbal one?

>

>

>

> > I think it's a much bigger problem that parents are NOT given the

> >autism dx when it is appropriate - this is how kids lose their

>chance for early intervention. As painful as it is to go through >the

eval process, and even more painful to get the autism dx, the

>alternative is to have children who do not get diagnosed >accurately

and lose out on appropriate intervention.

>

>

> I do agree with this, however, sometimes the intervention is the

> wrong one . And sometimes when it is truly identified as autism ,

> the child is getting the same intervention as the kid who has

> apraxia or langauge delay or disorder.. and that's not fair to the

> autistic child who needs different intervention ....

>

>

> >There are plenty of bitter parents out there who were

> > told to " wait and see " or " he'll grow out of it " , only to have a

> >child who is still non-verbal but might have talked if they had

>started ABA at 2 or 3 instead of 4-5 years.

>

>

>

> ABA.... is that the one where they tie the kid to the chair and make

> them point instead of talk? I call that abusive . It is not for

> those childrne who are not autistic. THey will regress not progress.

>

>

>

> >It's always better to know what's

> > going on at a young age. I encourage everyone to find a good

> > diagnostician and find out what's really up with the child.

>

>

>

> A good one . I agree.

>

> Tina

>

[Guest guest]

>

> > ABA has nothing to do with abuse. I've done ABA with both my

kids, and

> I would NEVER tie my child to a chair or treat them without

respect.

> Your information about ABA is incorrect. Before you slam ABA,

please

> make sure you know what it is - this is the only proven therapy for

> autism. Speech therapists in particular tend to dislike ABA and

give

> out inaccurate info about it (at least in my experience), so

please do

> your own research.

>

>

Hi, i did ask the question is that the therapy that ? did i not?

If someone is enquiring, then it stands to reason they did not have

any direct contact with this kind of therapy...

Thanks . Tina

[Guest guest]

>

> I would NEVER tie my child to a chair or treat them without respect.

> Your information about ABA is incorrect. Before you slam ABA, please

> make sure you know what it is - this is the only proven therapy for

> autism. Speech therapists in particular tend to dislike ABA and give

> out inaccurate info about it (at least in my experience), so please

do

> your own research.

>

>

I never said you or anyone on this list would tie a child to a

chair... I heard and there are a few aba therapies.. Lovas? a good one

i think for autistic children . Anyways, i won't be researching this

anytime soon , as it does not pertain to us and we have our own issues

and problems to deal with by the way . I was not trying to offend.

Thanks.

Tina

[Guest guest]

Yes, I agree - this was an inflammatory post.

Actually, if we had not done ABA with my youngest due to her ASD

diagnosis, I believe she would still have apraxia. ABA was critical to

her losing her apraxia dx as well as her ASD dx. Her language is

completely typical for her age now (average to above average in all

areas - artic, receptive and expressive). Plus my daughter *loved* her

ABA sessions. She still misses working with her ABA therapists, more

than six months after we ended her ABA program. She begs her brother's

therapists to work with her when they are here at the house - they do

a great job of making the " work " a lot of fun. Anyone who thinks ABA

is abusive has not seen it done by a qualified provider, or has just

received their information from someone who is very misinformed.

> >

> > My input on this again,

> >

> >

> >

> > > I've met a lot of parents with children who incorrectly did not

> get

> > > the autism spectrum diagnosis when they were young (only to get it

> > > once the child was school-age)

> >

> >

> > Hi, getting an autism diagnosis from a school doesn't mean it was

> > done correctly or is even accurate ./.. ,but I've yet to actually

> meet a parent

> >

> >

> > > whose child received an incorrect ASD diagnosis.

> >

> >

> >

> > I have met many with incorrect ASD diangoses ...

> >

> >

> >

> > > An experienced

> > > well-trained professional (this rules out speech paths, OTs,

> > > pediatricians, who are not qualified to dx) should have no

> > >difficulty in telling the difference in language delay/apraxia and

> >autism.

> >

> >

> > do they also know about language delay and language disorders ? Do

> > they know how to evaluate correctly ? Do they give the non verbal

> > cognitive test versus the verbal one?

> >

> >

> >

> > > I think it's a much bigger problem that parents are NOT given the

> > >autism dx when it is appropriate - this is how kids lose their

> >chance for early intervention. As painful as it is to go through

> >the eval process, and even more painful to get the autism dx, the

> >alternative is to have children who do not get diagnosed

> >accurately and lose out on appropriate intervention.

> >

> >

> > I do agree with this, however, sometimes the intervention is the

> > wrong one . And sometimes when it is truly identified as autism ,

> > the child is getting the same intervention as the kid who has

> > apraxia or langauge delay or disorder.. and that's not fair to the

> > autistic child who needs different intervention ....

> >

> >

> > >There are plenty of bitter parents out there who were

> > > told to " wait and see " or " he'll grow out of it " , only to have a

> > >child who is still non-verbal but might have talked if they had

> >started ABA at 2 or 3 instead of 4-5 years.

> >

> >

> >

> > ABA.... is that the one where they tie the kid to the chair and make

> > them point instead of talk? I call that abusive . It is not for

> > those childrne who are not autistic. THey will regress not progress.

> >

> >

> >

> > >It's always better to know what's

> > > going on at a young age. I encourage everyone to find a good

> > > diagnostician and find out what's really up with the child.

> >

> >

> >

> > A good one . I agree.

> >

> > Tina

[Guest guest]

What's ABA??

[Guest guest]

Hi everyone,

I would not be saying what I am if Tina's message wasn't posted as is.

But...

I'm jumping in on this a bit late but want to start by saying that I

too agree it was an inflammatory post. If I had read Tina's message

I would have emailed her and asked her to tweak it to explain that

when she used a word like abuse, to be clear. Was Tina referring to the

following examples (below) -which do qualify not only as abuse -but

in some cases as murder? We have ten moderators here and all use

their own judgment when they approve a message. When something is

posted that the moderator isn't comfortable with however -they'll

typically send it to me and I'll question the person. Tina didn't

just post a short quick message and probably the part of her message

that stood out was approved in haste by the moderator who read it.

(that's exactly what happened and she told me going ahead she will

be sure to read through the messages more carefully)

I never saw the message prior to it being approved.

Tina already clarified that she posted what she did in innocent

questioning and again as a newer member probably because of some of

what she read posted here in just the past few months. It of course

is not true that all ABA professionals use restraints it's also

naive to believe that none do.

Question is good or great ABA therapist...or modified ABA therapy

....is it appropriate for an apraxic child? The new member here

that just posted about her child's allergy to soy, the one with the

5 year old...her son is in modified ABA and it sounds like an

awesome program (I spoke with her today) He gets like 40 hours a

week of it too. (Please jump in and correct me if I'm wrong on this

and you don't have to give your name...or make one up)

Anyway -again, he is 5 years old. He is NONVERBAL! When I

suggested she seek other therapy for him she told me how great the

therapists are that work with her son and I told her that it may be

great, but it may not be appropriate for what her 'apraxic and not

autistic " son needs to help bring him a voice.

Most apraxic children have at best 1/2 hour session of speech

therapy seven days a week and occupational therapy for 1/2 hour two

days a week. That's just 4 and 1/2 hours of therapy a week...but

most start talking with just that amount and even with much less if

the therapy is appropriate.

This isn't a game over what therapy program is better overall, or

what is best for an autistic child when the child isn't apraxic, or

how can we justify putting an apraxic child without autism into a

40 hour ABA program -it's what therapy is going to be appropriate

for that child with certain conditions they need to overcome. It's

not acceptable to me either to have a child in a program for even 1

hour a week for years and the child remains nonverbal. And I don't

blame the parents who wouldn't know and who are assured that they

are " doing all they can " I blame the professionals that work with

that child who don't realize the obvious....it's NOT WORKING!

HELLO! And hey maybe speech therapy wouldn't work either. I don't

know. But at least give it a try since it worked for almost 99% of

the apraxic (nonautistic) children here!

And back to the abuse question. I agree that nobody should assume

all ABA is abuse and in many cases ABA has saved lives of children

that were lost to the world without it. (mainly autistic)

Of course there is good and bad in every profession. But as a child

advocate I'm deeply concerned not only about those children who do

end up with ABA therapists that are child abusers -but also with

children who are put into intensive ABA therapy (modified or not)

for years and are still nonverbal and somehow that's OK. It's not

OK and ABA is not appropriate for everyone. (period) If it's needed

and appropriate and done by a qualified person then that's great.

But this topic brings with it much emotion for some reason.

Why? Why can't we be aware that we have to be aware?!

If someone was to find articles about children dieing at the hands

of speech or occupational therapists -I'd not only let everyone here

know about it -I wouldn't defend the actions and if it happened more

and more I'd start to warn people not to leave their child alone

with the SLP like I'm saying not to leave your child alone with the

ABA therapist. With ABA it's not just one story -and some hit close

to home. Like the NJ story recently posted by a member here who has

a " dyspraxic " child. I asked then (and now) why was this child in

ABA therapy anyway. Nobody answered me. When I asked the mom today

she told me how great the program was. It sounded great -but it

also sounded like it sucks because her son is 5 and nonverbal. We

can't have that guys! WE have to raise awareness about the

differnce in therapies and they are not all the same.

Article about NJ dyspraxic child

/message/48587

ABA may be just what your child needs -but proceed with caution.

The following are messages pulled from the past few months and

probably why Tina was questioning what she was:

" Out of all the possible therapies a child with apraxia could be

given -including how many zillion alternative therapies -ABA is the

only one to proceed with caution -and why? I've personally met

children who were traumatized by it, and we've read about it

recently and it comes up in the archives. The most well known story

on the CHERAB site is Ketchum's story. Because of ABA she

developed post traumatic stress.

http://www.cherab.org/news/.html and isn't the only

one on the web diagnosed with post traumatic stress from ABA

http://www.astraeasweb.net/politics/aba.html or question

the " ethics " of it

http://www.sentex.net/~nexus23/naa_aba.html "

http://www.neurodiversity.com/restraints.html

http://users.1st.net/cibra/

" Re: Admitted Child Abuser to Be Sentenced Friday, June 2, for

Abusing Dyspraxic Chil

" > Under the guise of " behaviorism, " she subjected him to poking with

a

> pen, slapping on the head, yanking his head back by his hair,

punching

> him, putting a bag over his head, among other things, for taking

too

> long to answer (using an augmentive device) a question or for

getting

> an answer wrong. The parents caught her on tape. "

" Out of all the possible therapies a child with apraxia could be

given -including how many zillion alternative therapies -ABA is the

only one to proceed with caution -and why? I've personally met

children who were traumatized by it, and we've read about it

recently and it comes up in the archives. The most well known story

on the CHERAB site is Ketchum's story. Because of ABA she

developed post traumatic stress.

http://www.cherab.org/news/.html and isn't the only

one on the web diagnosed with post traumatic stress from ABA

http://www.astraeasweb.net/politics/aba.html or question

the " ethics " of it

http://www.sentex.net/~nexus23/naa_aba.html "

And of course there's Cameron's story. He too died at the hands of

someone who claimed to be doing some type of ABA/autism therapy

/message/45288

His " therapist " worked here

http://alakids.com/whatwedo.htm (her case is still in court right

now -you can google it)

ABA and even worse IBI type therapies are the only one that I know

of that have some horror stories attached. If you guys know of any

SLPs that have killed a child under the guise of therapy... please

do share.

We however have members here who have children with apraxia and

autism or PDD who are in modified ABA programs where the ABA

therapist is aware of the child's limitations.

And this also is in a recent message

Re: Admitted Child Abuser to Be Sentenced Friday, June 2, for

Abusing Dyspraxic Chil

I just found the information behind intensive behavioral

interventions that were listed at the website of the woman who

killed Cameron. Shockingly many of these very methods are the ones

charged against the behaviorist from NJ right now. I wonder if she

used this to her defense?!

" 7. Revisiting aversives

Provocative evidence that intolerance of autistics is embedded in

behaviourist views of autism, and of how this intolerance may be

manifested, inadvertently emerged from a study designed for entirely

another purpose.

In 1991, researchers from Rutgers, including the well-known

behaviourists and Jan Handleman, published a study

about the consequences of aversives in autism programs. The study

was called " Does punishment hurt? The impact of aversives on the

clinician. " They compared the morale and job satisfaction of more

than 100 staff, divided into those who could use only mild

aversives, and those who could use severe aversives on their

autistic clients. Severe aversives included (and one assumes were

not limited to) " slap, pinch, electric shock, noxious odor, noxious

liquid, and hair pull. "

Restraints were removed from the scope of this study when no one

involved could decide whether their use on autistics constituted

a " mild " or " severe " aversive. Clearly, they did not ask an

autistic. Nor did anyone notice that autistics had been injured and

killed in restraints, which might argue for a classification

of " severe " .

http://www.sentex.net/~nexus23/naa_aba.html

Perhaps some of the punishments are due to misinterpretations and

distortions of aversive consequences at the hands of apparently very

sick people. Below is one article I read, and these methods are the

ones described in horror to me by my own Aunt Leona who worked at

that time with some of those children. As she told me and as this

article confirms -inhumane punishments like electro shocking

autistic children did not cure autism, it created robotic trained

behavior to a particular stimulus.

" Should contingency management plans include planned aversive

consequences?

Should only positive reinforcement be specified or should plans be

made to use multiple contingencies that include aversive

consequences? With " normal " subjects addition of a mildly aversive

contingency will often neither help nor hurt. Hundert (1976)

compared giving tokens, taking tokens away for failure to emit the

target behaviors—a mildly aversive token cost punishment contingency—

and combining giving tokens and taking tokens away. The goal

behaviors were production of correct finished arithmetic problems

and paying attention to the teacher. All procedures produced similar

large gains in the elementary school student subjects. During the

baseline two period, inattention, but not production of arithmetic

problems, declined to baseline one levels. Arithmetic competency

appeared to be self rewarding. Not paying attention, however, may be

intrinsically more reinforcing than paying attention to arithmetic

lectures.

If one child gets more reinforcement from the attention of peers

than the modifier can deliver for desirable behavior, then not only

will that child's undesirable behaviors continue, but contingencies

applied to other children will be disrupted. In such cases, aversive

controls must be added to the modification plan to suppress

undesirable responses. The mildest technique is to ignore the

undesirable behavior and hope it will extinguish. If this fails try

a token cost plan or remove the subject the situation where positive

reinforcers may be earned (time-out).

If these mild procedures fail, then more extreme punishment

contingencies may become necessary. Physical punishment is rarely

advisable because it may be difficult to use such punishers at a

strength that will be effective without producing severe side

effects in the person punished and without exposing the modifier to

potential legal and ethical sanctions. Severe physical punishment is

usually forbidden in most institutional settings including schools.

Formerly, the rules were less stringent and Ivar Lovaas legally used

electric shock to successfully treat institutionalized autistic

children.

Ivar Lovaas and a shocking application of conditioning principles

While there no longer seems to be widespread objections to

behavioral interventions when these involve positive reinforcement

procedures, a great deal of controversy has surrounded the use of

aversive or restrictive procedures designed to decrease maladaptive

behaviors.--O. Ivar Lovaas, 1987, p. 311.

Lovaas (Chance and Lovaas, 1974) reported dramatic success in

treating " untreatable " autistic children by using severe physical

punishment. He (in Lovaas, Schaeffer, and , 1965) listed

three ways in which aversive events can be used as tools in therapy.

The first approach used punishment procedures similar to the

aversion therapy approaches (Chapter Nine). The second used the

negative reinforcement paradigm, in which shock is removed or

withheld, contingent upon specified behaviors (Chapter Four). The

third conditions new SDs to pain reduction (negative reinforcement),

with the goal of having these SDs become conditioned, positive

reinforcers. These results replicate Dunham's finding that his

subjects increased alternative behaviors associated with shock

offset. According to Lovaas, the effects of this third kind of

aversive procedure would be an increase in positive alternative

behaviors, as a paradoxical by-product of pain. Let us now examine

Lovaas's work.

Childhood autism is characterized by self-stimulatory behaviors,

which may be self-destructive, and a general lack of social

responsiveness. Autistic children do not respond well to traditional

psychotherapy and shock procedures were used as a last resort. In

the first experiment (Lovaas et al., 1965), two five-year-old

children were placed barefoot on a shock grid floor and escape-

avoidance procedures were initiated. One of the experimenters

stretched out his arms and said, " Come here. " Any movement towards

the experimenter terminated the shock for that trial. If the child

did not move, the second experimenter pushed him in the direction of

the first experimenter and terminated the shock. This escape phase

was followed by an avoidance procedure in which shock was withheld

if the child approached the experimenter within five seconds after

the " come here " command.

Shock was also used to punish self-stimulation and/or tantrum

behaviors. The verbal command " No! " was associated with shock and

acquired limited effectiveness as a conditioned aversive reinforcer.

It was found that not only did the children learn to respond to the

experimenters to avoid or escape shock, but the verbal command " come

here " became effective in environments equipped with shock

equipment. As predicted by Lovaas, alternative behaviors did appear.

Surprisingly, these included the subjects' seeking the

experimenters' company, showing affection, and increasing their

alertness to the environment. Lovaas and colleagues (1965) commented

that during successful avoidance trials the children ''appeared

happy. " There was also limited generalization of the adult-seeking

and affectionate behavior to situations outside the shock-avoidance

training environment.

Lovaas tested the hypothesis that the adults who had been associated

with safety from shock following avoidance trials and who had hugged

and fondled the children when the children approached would become

conditioned positive reinforcers. The children were taught to

operate a candy dispenser, which gave them both candy and a view of

the experimenter's face. During extinction trials the photograph of

the face of the experimenter (associated with shock reduction) was

more effective in slowing down the rate of extinction than

photographs of other faces. In addition, ward nurses reported that

following the shock avoidance training, the children began, for the

first time, to come to them for comfort when they were hurt in play.

On the negative side, Lovaas and colleagues (1965) noted that the

positive shock-produced changes in behavior often showed limited

generalization to new environments and people and extinguished

rapidly. The aversive techniques helped manage autistic children but

did not " cure " autism.

Lovaas (1974), was deeply concerned with the ethical and practical

issues surrounding the use of extreme aversive techniques such as

shock. First, he recommended using shock only for dealing with

extreme behavior such as self-mutilation—some autistic children have

literally chewed off fingers—and total lack of responsiveness to

others. In these cases, shock inhibited destructive behavior that

formerly had been reinforced by adults who had let the child have

his or her own way to avoid temper tantrums or self-mutilation.

Second, he recommended that therapists using aversive techniques

have a deep love for children, be patient enough to provide large

doses of affection for positive behavior, and be willing gradually

to shape desired behaviors that can compete with the destructive

behaviors. Third, he suggested training the parents of autistic

children in operant control procedures including aversive

techniques. The goal was for these parents to overcome their own

feelings of inefficacy and frustration until they could successfully

manage the behavior of their autistic children. This involved

showing the parents how acknowledging tantrums and self-mutilation

may have reinforced these behaviors and coaching the parents

to " load the child up with love " for positive behavior. He taught

the parents that suppressing bizarre behavior (such as self-

mutilation) through aversive control provided the opportunity to

begin building up appropriate behaviors (Lovaas, 1974). Fourth he

advocated such treatments only if they were the least restrictive

effective treatment. That is, to be used only after all nonaversive

treatments have failed and the only alternative is physical or

chemical restraints. Finally he recommended that extreme aversive

consequences only be used by doctoral level professionals or other

highly trained persons working under supervision (Lovaas and Favell,

1987).

Ethical codes require a balancing test of the benefits and costs of

research or therapy techniques. Lovaas notes that the costs of NOT

effectively treating severe aggressive or self mutilation behaviors

are high. He concluded that the high benefits produced by his

treatments justified the discomfort suffered by the subjects (Lovaas

and Favell, 1987). Urged on by child's rights advocates, the

California legislature came to the opposite conclusion. New laws

made it impossible for Lovaas to continue his shock treatments at

the University of California at Los Angeles. Currently California

laws forbid such treatments on the theory that they constitute

abuse. Many states have adopted stringent procedures to review and

monitor use of aversive control in therapeutic settings and others

have banned some treatments altogether (Repp, & Singh, Eds., 1990). "

http://psychologie.fernuni-

hagen.de/Lernportal/Externe_Materialien/Swenson_Operant_Learning/OL.h

tml

=====

[Guest guest]

I encourage everyone to do their own research on ABA and on their

providers. As with any treatment or therapy, ultimately the parents

are responsible for checking the qualifications of the therapist and

deciding if the therapist is trustworthy. There are folks out there

who call themselves behavior therapists but are not certified. Don't

hire someone who doesn't have the necessary credentials and

experience! This is true with any professional. However, since ABA is

typically not covered by insurance and parents are paying out of

pocket, the credentials requirements of the ins companies have to

instead be enforced by the parents, who are often losing their shirts

on expensive therapy.

However, the existence of inethical people who claim to be providing

ABA does not in any way imply that ABA is abusive or harmful. ABA

should always be geared to the needs of the child, and should never

include any technique which is not appropriate for that child -

forming an *individualized* program is a crucial part of ABA. The

primary large ABA providers - CARD, Lovaas LIFE Institute, and the

other big one which I cannot remember - none of them permit aversives,

and all of them have proven track records of extraordinary success

with the kids they treat. They also have supervision built into their

programs so that kids aren't abandoned with therapists who are not

ready for that responsibility.

I think though that this thread has turned into a critique of a useful

therapy, when this has all been discussed before. I have posted a

number of times about ABA and how very much it has helped my children,

including how it has addressed my daughter's apraxia. There is just

general resistance to talking about anything that in any way relates

to autism here. If your child does not have just an uncomplicated

speech and motor delay, then he or she may need more than speech therapy.

>

> Hi everyone,

>

> I would not be saying what I am if Tina's message wasn't posted as is.

>

> But...

>

> I'm jumping in on this a bit late but want to start by saying that I

> too agree it was an inflammatory post. If I had read Tina's message

> I would have emailed her and asked her to tweak it to explain that

> when she used a word like abuse, to be clear. Was Tina referring to the

> following examples (below) -which do qualify not only as abuse -but

> in some cases as murder? We have ten moderators here and all use

> their own judgment when they approve a message. When something is

> posted that the moderator isn't comfortable with however -they'll

> typically send it to me and I'll question the person. Tina didn't

> just post a short quick message and probably the part of her message

> that stood out was approved in haste by the moderator who read it.

> (that's exactly what happened and she told me going ahead she will

> be sure to read through the messages more carefully)

>

> I never saw the message prior to it being approved.

>

> Tina already clarified that she posted what she did in innocent

> questioning and again as a newer member probably because of some of

> what she read posted here in just the past few months. It of course

> is not true that all ABA professionals use restraints it's also

> naive to believe that none do.

>

> Question is good or great ABA therapist...or modified ABA therapy

> ...is it appropriate for an apraxic child? The new member here

> that just posted about her child's allergy to soy, the one with the

> 5 year old...her son is in modified ABA and it sounds like an

> awesome program (I spoke with her today) He gets like 40 hours a

> week of it too. (Please jump in and correct me if I'm wrong on this

> and you don't have to give your name...or make one up)

>

> Anyway -again, he is 5 years old. He is NONVERBAL! When I

> suggested she seek other therapy for him she told me how great the

> therapists are that work with her son and I told her that it may be

> great, but it may not be appropriate for what her 'apraxic and not

> autistic " son needs to help bring him a voice.

>

> Most apraxic children have at best 1/2 hour session of speech

> therapy seven days a week and occupational therapy for 1/2 hour two

> days a week. That's just 4 and 1/2 hours of therapy a week...but

> most start talking with just that amount and even with much less if

> the therapy is appropriate.

>

> This isn't a game over what therapy program is better overall, or

> what is best for an autistic child when the child isn't apraxic, or

> how can we justify putting an apraxic child without autism into a

> 40 hour ABA program -it's what therapy is going to be appropriate

> for that child with certain conditions they need to overcome. It's

> not acceptable to me either to have a child in a program for even 1

> hour a week for years and the child remains nonverbal. And I don't

> blame the parents who wouldn't know and who are assured that they

> are " doing all they can " I blame the professionals that work with

> that child who don't realize the obvious....it's NOT WORKING!

> HELLO! And hey maybe speech therapy wouldn't work either. I don't

> know. But at least give it a try since it worked for almost 99% of

> the apraxic (nonautistic) children here!

>

> And back to the abuse question. I agree that nobody should assume

> all ABA is abuse and in many cases ABA has saved lives of children

> that were lost to the world without it. (mainly autistic)

>

> Of course there is good and bad in every profession. But as a child

> advocate I'm deeply concerned not only about those children who do

> end up with ABA therapists that are child abusers -but also with

> children who are put into intensive ABA therapy (modified or not)

> for years and are still nonverbal and somehow that's OK. It's not

> OK and ABA is not appropriate for everyone. (period) If it's needed

> and appropriate and done by a qualified person then that's great.

> But this topic brings with it much emotion for some reason.

> Why? Why can't we be aware that we have to be aware?!

>

> If someone was to find articles about children dieing at the hands

> of speech or occupational therapists -I'd not only let everyone here

> know about it -I wouldn't defend the actions and if it happened more

> and more I'd start to warn people not to leave their child alone

> with the SLP like I'm saying not to leave your child alone with the

> ABA therapist. With ABA it's not just one story -and some hit close

> to home. Like the NJ story recently posted by a member here who has

> a " dyspraxic " child. I asked then (and now) why was this child in

> ABA therapy anyway. Nobody answered me. When I asked the mom today

> she told me how great the program was. It sounded great -but it

> also sounded like it sucks because her son is 5 and nonverbal. We

> can't have that guys! WE have to raise awareness about the

> differnce in therapies and they are not all the same.

> Article about NJ dyspraxic child

> /message/48587

>

> ABA may be just what your child needs -but proceed with caution.

>

> The following are messages pulled from the past few months and

> probably why Tina was questioning what she was:

>

> " Out of all the possible therapies a child with apraxia could be

> given -including how many zillion alternative therapies -ABA is the

> only one to proceed with caution -and why? I've personally met

> children who were traumatized by it, and we've read about it

> recently and it comes up in the archives. The most well known story

> on the CHERAB site is Ketchum's story. Because of ABA she

> developed post traumatic stress.

> http://www.cherab.org/news/.html and isn't the only

> one on the web diagnosed with post traumatic stress from ABA

> http://www.astraeasweb.net/politics/aba.html or question

> the " ethics " of it

> http://www.sentex.net/~nexus23/naa_aba.html "

> http://www.neurodiversity.com/restraints.html

> http://users.1st.net/cibra/

>

> " Re: Admitted Child Abuser to Be Sentenced Friday, June 2, for

> Abusing Dyspraxic Chil

>

>

> " > Under the guise of " behaviorism, " she subjected him to poking with

> a

> > pen, slapping on the head, yanking his head back by his hair,

> punching

> > him, putting a bag over his head, among other things, for taking

> too

> > long to answer (using an augmentive device) a question or for

> getting

> > an answer wrong. The parents caught her on tape. "

>

> " Out of all the possible therapies a child with apraxia could be

> given -including how many zillion alternative therapies -ABA is the

> only one to proceed with caution -and why? I've personally met

> children who were traumatized by it, and we've read about it

> recently and it comes up in the archives. The most well known story

> on the CHERAB site is Ketchum's story. Because of ABA she

> developed post traumatic stress.

> http://www.cherab.org/news/.html and isn't the only

> one on the web diagnosed with post traumatic stress from ABA

> http://www.astraeasweb.net/politics/aba.html or question

> the " ethics " of it

> http://www.sentex.net/~nexus23/naa_aba.html "

>

> And of course there's Cameron's story. He too died at the hands of

> someone who claimed to be doing some type of ABA/autism therapy

> /message/45288

>

> His " therapist " worked here

> http://alakids.com/whatwedo.htm (her case is still in court right

> now -you can google it)

> ABA and even worse IBI type therapies are the only one that I know

> of that have some horror stories attached. If you guys know of any

> SLPs that have killed a child under the guise of therapy... please

> do share.

>

> We however have members here who have children with apraxia and

> autism or PDD who are in modified ABA programs where the ABA

> therapist is aware of the child's limitations.

>

> And this also is in a recent message

> Re: Admitted Child Abuser to Be Sentenced Friday, June 2, for

> Abusing Dyspraxic Chil

>

>

> I just found the information behind intensive behavioral

> interventions that were listed at the website of the woman who

> killed Cameron. Shockingly many of these very methods are the ones

> charged against the behaviorist from NJ right now. I wonder if she

> used this to her defense?!

>

>

> " 7. Revisiting aversives

>

> Provocative evidence that intolerance of autistics is embedded in

> behaviourist views of autism, and of how this intolerance may be

> manifested, inadvertently emerged from a study designed for entirely

> another purpose.

>

> In 1991, researchers from Rutgers, including the well-known

> behaviourists and Jan Handleman, published a study

> about the consequences of aversives in autism programs. The study

> was called " Does punishment hurt? The impact of aversives on the

> clinician. " They compared the morale and job satisfaction of more

> than 100 staff, divided into those who could use only mild

> aversives, and those who could use severe aversives on their

> autistic clients. Severe aversives included (and one assumes were

> not limited to) " slap, pinch, electric shock, noxious odor, noxious

> liquid, and hair pull. "

>

> Restraints were removed from the scope of this study when no one

> involved could decide whether their use on autistics constituted

> a " mild " or " severe " aversive. Clearly, they did not ask an

> autistic. Nor did anyone notice that autistics had been injured and

> killed in restraints, which might argue for a classification

> of " severe " .

> http://www.sentex.net/~nexus23/naa_aba.html

>

> Perhaps some of the punishments are due to misinterpretations and

> distortions of aversive consequences at the hands of apparently very

> sick people. Below is one article I read, and these methods are the

> ones described in horror to me by my own Aunt Leona who worked at

> that time with some of those children. As she told me and as this

> article confirms -inhumane punishments like electro shocking

> autistic children did not cure autism, it created robotic trained

> behavior to a particular stimulus.

>

> " Should contingency management plans include planned aversive

> consequences?

>

> Should only positive reinforcement be specified or should plans be

> made to use multiple contingencies that include aversive

> consequences? With " normal " subjects addition of a mildly aversive

> contingency will often neither help nor hurt. Hundert (1976)

> compared giving tokens, taking tokens away for failure to emit the

> target behaviors—a mildly aversive token cost punishment contingency—

> and combining giving tokens and taking tokens away. The goal

> behaviors were production of correct finished arithmetic problems

> and paying attention to the teacher. All procedures produced similar

> large gains in the elementary school student subjects. During the

> baseline two period, inattention, but not production of arithmetic

> problems, declined to baseline one levels. Arithmetic competency

> appeared to be self rewarding. Not paying attention, however, may be

> intrinsically more reinforcing than paying attention to arithmetic

> lectures.

>

> If one child gets more reinforcement from the attention of peers

> than the modifier can deliver for desirable behavior, then not only

> will that child's undesirable behaviors continue, but contingencies

> applied to other children will be disrupted. In such cases, aversive

> controls must be added to the modification plan to suppress

> undesirable responses. The mildest technique is to ignore the

> undesirable behavior and hope it will extinguish. If this fails try

> a token cost plan or remove the subject the situation where positive

> reinforcers may be earned (time-out).

>

> If these mild procedures fail, then more extreme punishment

> contingencies may become necessary. Physical punishment is rarely

> advisable because it may be difficult to use such punishers at a

> strength that will be effective without producing severe side

> effects in the person punished and without exposing the modifier to

> potential legal and ethical sanctions. Severe physical punishment is

> usually forbidden in most institutional settings including schools.

> Formerly, the rules were less stringent and Ivar Lovaas legally used

> electric shock to successfully treat institutionalized autistic

> children.

>

> Ivar Lovaas and a shocking application of conditioning principles

>

> While there no longer seems to be widespread objections to

> behavioral interventions when these involve positive reinforcement

> procedures, a great deal of controversy has surrounded the use of

> aversive or restrictive procedures designed to decrease maladaptive

> behaviors.--O. Ivar Lovaas, 1987, p. 311.

>

> Lovaas (Chance and Lovaas, 1974) reported dramatic success in

> treating " untreatable " autistic children by using severe physical

> punishment. He (in Lovaas, Schaeffer, and , 1965) listed

> three ways in which aversive events can be used as tools in therapy.

> The first approach used punishment procedures similar to the

> aversion therapy approaches (Chapter Nine). The second used the

> negative reinforcement paradigm, in which shock is removed or

> withheld, contingent upon specified behaviors (Chapter Four). The

> third conditions new SDs to pain reduction (negative reinforcement),

> with the goal of having these SDs become conditioned, positive

> reinforcers. These results replicate Dunham's finding that his

> subjects increased alternative behaviors associated with shock

> offset. According to Lovaas, the effects of this third kind of

> aversive procedure would be an increase in positive alternative

> behaviors, as a paradoxical by-product of pain. Let us now examine

> Lovaas's work.

>

> Childhood autism is characterized by self-stimulatory behaviors,

> which may be self-destructive, and a general lack of social

> responsiveness. Autistic children do not respond well to traditional

> psychotherapy and shock procedures were used as a last resort. In

> the first experiment (Lovaas et al., 1965), two five-year-old

> children were placed barefoot on a shock grid floor and escape-

> avoidance procedures were initiated. One of the experimenters

> stretched out his arms and said, " Come here. " Any movement towards

> the experimenter terminated the shock for that trial. If the child

> did not move, the second experimenter pushed him in the direction of

> the first experimenter and terminated the shock. This escape phase

> was followed by an avoidance procedure in which shock was withheld

> if the child approached the experimenter within five seconds after

> the " come here " command.

>

> Shock was also used to punish self-stimulation and/or tantrum

> behaviors. The verbal command " No! " was associated with shock and

> acquired limited effectiveness as a conditioned aversive reinforcer.

> It was found that not only did the children learn to respond to the

> experimenters to avoid or escape shock, but the verbal command " come

> here " became effective in environments equipped with shock

> equipment. As predicted by Lovaas, alternative behaviors did appear.

> Surprisingly, these included the subjects' seeking the

> experimenters' company, showing affection, and increasing their

> alertness to the environment. Lovaas and colleagues (1965) commented

> that during successful avoidance trials the children ''appeared

> happy. " There was also limited generalization of the adult-seeking

> and affectionate behavior to situations outside the shock-avoidance

> training environment.

>

> Lovaas tested the hypothesis that the adults who had been associated

> with safety from shock following avoidance trials and who had hugged

> and fondled the children when the children approached would become

> conditioned positive reinforcers. The children were taught to

> operate a candy dispenser, which gave them both candy and a view of

> the experimenter's face. During extinction trials the photograph of

> the face of the experimenter (associated with shock reduction) was

> more effective in slowing down the rate of extinction than

> photographs of other faces. In addition, ward nurses reported that

> following the shock avoidance training, the children began, for the

> first time, to come to them for comfort when they were hurt in play.

> On the negative side, Lovaas and colleagues (1965) noted that the

> positive shock-produced changes in behavior often showed limited

> generalization to new environments and people and extinguished

> rapidly. The aversive techniques helped manage autistic children but

> did not " cure " autism.

>

> Lovaas (1974), was deeply concerned with the ethical and practical

> issues surrounding the use of extreme aversive techniques such as

> shock. First, he recommended using shock only for dealing with

> extreme behavior such as self-mutilation—some autistic children have

> literally chewed off fingers—and total lack of responsiveness to

> others. In these cases, shock inhibited destructive behavior that

> formerly had been reinforced by adults who had let the child have

> his or her own way to avoid temper tantrums or self-mutilation.

> Second, he recommended that therapists using aversive techniques

> have a deep love for children, be patient enough to provide large

> doses of affection for positive behavior, and be willing gradually

> to shape desired behaviors that can compete with the destructive

> behaviors. Third, he suggested training the parents of autistic

> children in operant control procedures including aversive

> techniques. The goal was for these parents to overcome their own

> feelings of inefficacy and frustration until they could successfully

> manage the behavior of their autistic children. This involved

> showing the parents how acknowledging tantrums and self-mutilation

> may have reinforced these behaviors and coaching the parents

> to " load the child up with love " for positive behavior. He taught

> the parents that suppressing bizarre behavior (such as self-

> mutilation) through aversive control provided the opportunity to

> begin building up appropriate behaviors (Lovaas, 1974). Fourth he

> advocated such treatments only if they were the least restrictive

> effective treatment. That is, to be used only after all nonaversive

> treatments have failed and the only alternative is physical or

> chemical restraints. Finally he recommended that extreme aversive

> consequences only be used by doctoral level professionals or other

> highly trained persons working under supervision (Lovaas and Favell,

> 1987).

>

> Ethical codes require a balancing test of the benefits and costs of

> research or therapy techniques. Lovaas notes that the costs of NOT

> effectively treating severe aggressive or self mutilation behaviors

> are high. He concluded that the high benefits produced by his

> treatments justified the discomfort suffered by the subjects (Lovaas

> and Favell, 1987). Urged on by child's rights advocates, the

> California legislature came to the opposite conclusion. New laws

> made it impossible for Lovaas to continue his shock treatments at

> the University of California at Los Angeles. Currently California

> laws forbid such treatments on the theory that they constitute

> abuse. Many states have adopted stringent procedures to review and

> monitor use of aversive control in therapeutic settings and others

> have banned some treatments altogether (Repp, & Singh, Eds., 1990). "

>

> http://psychologie.fernuni-

> hagen.de/Lernportal/Externe_Materialien/Swenson_Operant_Learning/OL.h

> tml

>

> =====

>

[Guest guest]

Ok, I told myself I was going to stay out of this, but...

Improperly provided therapy is NOT limited to ABA providers. I have

been a " speech therapy mom " now for nearly 7 years - sometimes

observing 4 hours a week between 2 kids. For most of that time,

there was no 1 way window or closed circuit TV available so I sat

right outside the room. Now I loved the therapist and trusted her

completely after observing for over a year, but didn't have the time

to go home and rewatch what she had done with him - and HOW she did

it. All that time, I was appalled by the number of parents who just

handed off their kids and went and read a magazine. First of all, I

never expected ST alone to " fix " my kid - homework was needed!

Second, there were times when I heard a child cry for the entire

session, and the next session, and the one after that. Was the

therapist abusing the child? No - likely s/he was trying to get

them to cooperate, but I would argue that having it be so traumatic

for the child (who was sometimes as young as 2 and alone with the

SLP) was counterproductive. I heard so much of this coming from one

particular room that I ultimately complained to the director of the

therapy center. I could hear how this woman spoke to the children,

spoke to the parents - as if she were a gift from god. And she was

often doing feeding interventions with non-verbal children in

wheelchairs. I could hear them choking, vomitting, crying, and the

woman telling the parents that they were just going to have to get

over it.

When I told the director she was appalled and I could tell she

didn't believe me. I asked her to come and listen.

The woman was gone the next time I went in. Gone to never return.

There are terrible people everywhere. There are unethical people

everywhere. We should not condemn an entire profession - or therapy

class - for the sins of a few. We don't do it with teachers, with

police officers, etc.. Why here?

>

> I encourage everyone to do their own research on ABA and on their

> providers. As with any treatment or therapy, ultimately the parents

> are responsible for checking the qualifications of the therapist

and

> deciding if the therapist is trustworthy. There are folks out there

> who call themselves behavior therapists but are not certified.

Don't

> hire someone who doesn't have the necessary credentials and

> experience! This is true with any professional. However, since ABA

is

> typically not covered by insurance and parents are paying out of

> pocket, the credentials requirements of the ins companies have to

> instead be enforced by the parents, who are often losing their

shirts

> on expensive therapy.

>

> However, the existence of inethical people who claim to be

providing

> ABA does not in any way imply that ABA is abusive or harmful. ABA

> should always be geared to the needs of the child, and should never

> include any technique which is not appropriate for that child -

> forming an *individualized* program is a crucial part of ABA. The

> primary large ABA providers - CARD, Lovaas LIFE Institute, and the

> other big one which I cannot remember - none of them permit

aversives,

> and all of them have proven track records of extraordinary success

> with the kids they treat. They also have supervision built into

their

> programs so that kids aren't abandoned with therapists who are not

> ready for that responsibility.

>

> I think though that this thread has turned into a critique of a

useful

> therapy, when this has all been discussed before. I have posted a

> number of times about ABA and how very much it has helped my

children,

> including how it has addressed my daughter's apraxia. There is just

> general resistance to talking about anything that in any way

relates

> to autism here. If your child does not have just an uncomplicated

> speech and motor delay, then he or she may need more than speech

therapy.

>

>

[Guest guest]

I have always heard wonderful things about ABA. I would be the first to

start my daughter on an ABA program if she was on the spectrum. I have

never heard of ABA being used to treat " just " apraxia, though. That is

very interesting - Is that a real-life application for treating

apraxia?

" There is just general resistance to talking about anything that in any

way relates to autism here. "

Can you really blame parents of apraxic, non-ASD kids being skittish

about discussing autism? So many of us have been through the wringer

with fears and suspicions of autism. I can honestly say that, once our

family got past the neurodevelopmental evaluation *without* an ASD

diagnosis, I never wanted to look back. It was a scary place that I

didn't want to visit again, if I didn't have to. Now that some time has

passed, I can discuss it, but I cannot blame others for being hesitant.

Warm regards,

******************

(Rochester, NY)

Mom to , 3.1 years, Verbal Apraxia

& , 11 months

[Guest guest]

I've also heard of it happening - I'm sure some children do get an

incorrect ASD dx. But I don't personally know of any cases; they are

all cases I've just read about online. On the other hand, I do know in

person quite a number of children who should have received the autism

dx, but did not for a number of years. In these cases where I know the

children and parents involved, I can be certain that in fact the

correct dx was not given. This is changing in my area, but some

doctors do feel some reluctance to say the " A " word to parents. My own

ped hemmed and hawed, and then when I asked him straight out if my son

had autism, he said, " No, maybe PDD " . PDD is easier to say, apparently

. He still discouraged me from seeing a neurologist, saying it would

not be helpful. (I didn't listen).

As far as the children I read about online who were misdiagnosed with

autism, I don't know them. I do know the kind of denial that parents

sometimes have over their child's autism though; I've been there

myself. It is very difficult and scary to be told your child has

autism. I've known parents who were unable to come to terms with the

dx and just continued to deny it, even in situations where the child

was not even on the mild end of the spectrum. Most, if not all,

parents go through a grieving period when they learn their child has

autism. Part of the grieving process is denial, and denying that the

diagnosis is accurate is fairly common.

>

> I have heard of LOTS of kids who were misdiagnosed with ASD because of a

> speech disorder. However, misdiagnosis or lack of doagnosis when there

> should be one are both problematic. A very competant Developmental

> Pediatrician or Neurologist can be your best friend in helping to overt

> these possibilities, I agree.

[Guest guest]

>I've also heard of it happening - I'm sure some children do get an

>incorrect ASD dx. But I don't personally know of any cases; they are

>all cases I've just read about online.

Come to my neck of the woods. Three children evaluated by the same

University early childhood team in the same spring THAT I KNOW OF (there

may be more) were all mis-diagnosed. My son had verbal dyspraxia and some

oral apraxia and an undefined less severe mixed language disorder. Another

child had a severe phonological disorder, the third I don't know, but he

was in speech therapy. These are children my son's speech therapist was

working with two years later this spring. All were mis-diagnosed between

the ages of 2 and 3 and were clearly not autistic two years later. My son

was diagnosed with " moderate autism " and they were talking about eventual

mainstreaming by high school!!! When I questioned the diagnosis I was

accused of being in denial...I was not and am not a parent in denial!

Even the most reputable clinic in the state acknowledged to me that autism

is often misdiagnosed by the early childhood team that evaluated my

son. They did first ask who the pediatrician on the team was, because one

pediatrician in particular makes diagnoses that stick. The dr. on my son's

team was NOT this accurate doctor.

>Most, if not all,

>parents go through a grieving period when they learn their child has

>autism. Part of the grieving process is denial, and denying that the

>diagnosis is accurate is fairly common.

Yes, it is, but sometimes it is also a matter of a parent knowing something

doesn't sound accurate. Apraxia is almost an unknown around here, even

with therapists. SLPs have heard about it in textbooks, but wouldn't

recognize it if it bit them! Autism on the other hand is a " hot " diagnosis

and buzz word around here. It gets you services. I actually have had

people tell me I should be grateful he got diagnosed because he got more

therapies. Grateful? For what? For no improvement and even some harm

from some of those therapies? Grateful that two years were wasted while he

made no improvement? No thanks! If I could rewind I'd trade back the

autism diagnosis in a flash!

Between the age of 23 mo and 2.5 yrs my son made NO progress in speech

therapy through early intervention. I, the mother who was clearly in

denial according to these professionals, was the one who asked for another

evaluation because I didn't think it was right for 6 mo to go by with no

progress. That is when he was diagnosed with autism. Over the NEXT 18

months despite increasing his therapies to 5 hours per week and gearing

them toward treating autism he STILL made no speech and language gains. It

wasn't until I STOPPED all autism therapies, finally got an apraxia

diagnosis and started Prompt therapy that he has finally made progress. In

his first 5 months of therapies targetting apraxia he gained 6 months of

language. This was after TWO YEARS of NO progress! He went from being a

little delayed in speech and expressive language and age appropriate in

receptive to being severely delayed in both! At his last testing in

January he is still >3 SD below age appropriate in speech production and

around 3 SD below in language, but he had gains for the first time since he

was first tested. He is now classified as having a severe speech

production disorder and a moderate to severe language disorder (with

receptive being moderate, expressive severe.) He is improving slowly with

his greatest gains in receptive language, not speech, but he's making

steady progress after losing ground for so long. (His SLP believes his

receptive issues are due to not being able to store language properly

because he can't say it properly - with Prompting in therapy he is now

" hearing " the words after getting help saying them. He might not be able

to repeat them on his own without the tactile cuing, but hearing himself

say them properly a few times with help seems to help him store and be able

to retrieve the language - not necessarily an apraxia thing, but kinda

related according to his SLP...but that is a whole other topic!!!)

I truly think it is a regional thing. Had I lived in say, NJ, or somewhere

where apraxia is more common I imagine that he would have been diagnosed at

2.5 yrs and we would have never had to deal with the autism misdiagnosis

nightmare. Instead all kinds of signs of apraxia were twisted into being

autism signs. Re-reading his thick report on the team's finding is just

depressing. They obviously knew nothing about apraxia or it would have

been obvious.

I am bitter and probably sound unfriendly about this whole

experience. Yes, my son's is just another story on the internet, but

behind those internet stories are true people who truly have been through

horrible times due to a misdiagnosis. I'm still all for early

intervention. There is a child at my son's preschool who I met last summer

when they had 3 weeks of school together. She was diagnosed with autism

ACCURATELY within days of my son. This team did get it right

sometimes. She and my son shared therapists without every crossing paths

until last summer. I didn't see her the entire preschool year because she

went on opposite days from my son. They are together in a class again this

summer. Her improvement over this last year is amazing! ABA and the other

therapies she receives are clearly the most appropriate for her. My son

had the exact same therapists and similar therapy approaches and he did not

have any improvement. To me that is proof enough. Treat him for autism -

nothing. Treat him for apraxia - progress.

Miche

[Guest guest]

your comments are candid which is admirable.

They are difficult to consider without considering the implications.

Are the comments and experiences of parents who have a joint

diagnosis so distressing that it out weighs the possiblility that

they may have some useful imput for parents who are unsure of whether

they are purely dealing with a speechdisorder?Or the possibility that

there may sometimes be a cross over in terms of treatment as with

fish oils.

Is this why it is so very difficult to raise any question of a

possibility of some element of ASD because parents simply feel as

you do that " It was a scary place that I didn't want to visit again,

if I didn't have to. "

I think you are very honest to admit that especially as you must be

aware how dreadful it must sound to the parents of kids with asd .

asd.

What you say actually confirms what I have long suspected to be true -

that for many parents the idea of a diagnosis of autism is almost

debilitating and that if it is " just " apraxia they are almost hostile

to the idea of ASD being raised again.

It actually makes many of the recent discussions make sense if you

accept that for some they are highly motivated by the wish to place

any diagnosis of autism as far away as possible.

Would your preference be that any parents here who have a child with

apraxia and autism simply leave the group? Would it make matters here

more harmonious? I'm genuinely asking. I think I have actually said

before that it might be better for this particular group to declare

that its preference is for discussion about purely aparic kids. As

the same treatment for my son is treating both his apraxia and his

autism I have always wanted to hang around and get info on both but I

have lately felt unwelcome. It is not because the two matters are

incompatible but that the possibility of any crossover makes everyone

defensive. If it is uncomfortable for everyone perhaps it should be

considered? I think it would be a terrible loss of resources but I

confess it is draining to be constantly having to remember apraxia =

acceptable but autism = .....I don't know , but clearly something

intolerable

Best regards

Deborah

>

> I have always heard wonderful things about ABA. I would be the

first to

> start my daughter on an ABA program if she was on the spectrum. I

have

> never heard of ABA being used to treat " just " apraxia, though.

That is

> very interesting - Is that a real-life application for treating

> apraxia?

>

> " There is just general resistance to talking about anything that in

any

> way relates to autism here. "

> Can you really blame parents of apraxic, non-ASD kids being skittish

> about discussing autism? So many of us have been through the

wringer

> with fears and suspicions of autism. I can honestly say that, once

our

> family got past the neurodevelopmental evaluation *without* an ASD

> diagnosis, I never wanted to look back. Now that some time has

> passed, I can discuss it, but I cannot blame others for being

hesitant.

>

> Warm regards,

> ******************

> (Rochester, NY)

> Mom to , 3.1 years, Verbal Apraxia

> & , 11 months

>

[Guest guest]

Hi Deborah and -

I think for any parents who are certain that their child does NOT have

autism, it should not be distressing to hear discussion about autism

and apraxia. I don't mean to sound unsympathetic, but I've been

through the gut-wrenching evals twice, with both my children, and both

times was told that my child DID have ASD (and that my youngest also

had apraxia). So I apologize for feeling you are fortunate! I don't

think it's negative that your child's doctors wanted to make sure that

they understood all of your child's issues - otherwise the treatment

would be less than optimal.

But seriously, if this list decides to ban discussion of autism, what

will happen to the parents who come here with fresh concerns, who are

not sure how to tell the difference? I spent a number of months (about

six) thinking that my oldest had apraxia (part of that time on this

list), only to eventually realize that he had ASD, and not apraxia.

The discussion about co-existing symptoms of sensory issues, social

problems, and motor delay can really confuse the situation (and I'm

speaking from my own experience), particularly if the majority are

saying that these symptoms should not raise any concerns of autism.

I've seen messages that implied misconceptions about autism as well -

for example, kids with autism are unaffectionate, they don't want to

interact with others, etc, which just aren't true across the board, or

even for the majority of children with ASD.

If all of us with kids who have both autism and apraxia feel unwelcome

and leave this group, I think parents who are new to the group may

unrealistically be given the impression that they don't need to worry

about their kid having autism. As hard as the autism dx is to hear,

it's much worse to look back with regret about the lost months without

appropriate intervention.

> >

> > I have always heard wonderful things about ABA. I would be the

> first to

> > start my daughter on an ABA program if she was on the spectrum. I

> have

> > never heard of ABA being used to treat " just " apraxia, though.

> That is

> > very interesting - Is that a real-life application for treating

> > apraxia?

> >

> > " There is just general resistance to talking about anything that in

> any

> > way relates to autism here. "

> > Can you really blame parents of apraxic, non-ASD kids being skittish

> > about discussing autism? So many of us have been through the

> wringer

> > with fears and suspicions of autism. I can honestly say that, once

> our

> > family got past the neurodevelopmental evaluation *without* an ASD

> > diagnosis, I never wanted to look back. Now that some time has

> > passed, I can discuss it, but I cannot blame others for being

> hesitant.

> >

> > Warm regards,

> > ******************

> > (Rochester, NY)

> > Mom to , 3.1 years, Verbal Apraxia

> > & , 11 months

> >

>

[Guest guest]

> > >

> > > I have always heard wonderful things about ABA. I would be

the

> > first to

> > > start my daughter on an ABA program if she was on the

spectrum. I

> > have

> > > never heard of ABA being used to treat " just " apraxia,

though.

> > That is

> > > very interesting - Is that a real-life application for

treating

> > > apraxia?

> > >

> > > " There is just general resistance to talking about anything

that in

> > any

> > > way relates to autism here. "

> > > Can you really blame parents of apraxic, non-ASD kids being

skittish

> > > about discussing autism? So many of us have been through the

> > wringer

> > > with fears and suspicions of autism. I can honestly say that,

once

> > our

> > > family got past the neurodevelopmental evaluation *without* an

ASD

> > > diagnosis, I never wanted to look back. Now that some time

has

> > > passed, I can discuss it, but I cannot blame others for being

> > hesitant.

> > >

> > > Warm regards,

> > > ******************

> > > (Rochester, NY)

> > > Mom to , 3.1 years, Verbal Apraxia

> > > & , 11 months

> > >

> >

>

Hi all.

Jeanne here. I am a moderator of this group, and also a bereaved

parent. My surviving children have different diagnosis's one has

apraxia/adhd/mild aspergers and the younger one is diagnosed with

pdd-nos a high functiioning form of autism. I just wanted to put my

two cents in. If I had my choice I wish I had all my kids.Danny

passed away from a rare cancer at 3 1/2 years ago. It will be 10

years in Sept 11, 2006. Adam my older son was diagnosed with apraxia

and adhd. I definately wouldn't have given him ABA therapy when he

was little. He already was frustrated by not being able to talk when

he was 2, and diagnosed. My other son Josh who is diagnosed with

PDD, does have ABA therapy and it is working with him. With Josh,

you have to get him redirected on a task. If you child is diagnosed

with apraxia, and doesn't have any autism tendencies, in my opinion

they shouldn't be given ABA therapy. It would only frustrate them,

to be given a repetative task they have to do especially if they

don't talk. On the other hand if they have autistic tendencies and

ABA is working then something of the childs make up needs that. I

just wanted to also say that as long as you have a diagnosis you

will better know how to help your child. But the wrong diagnosis or

therapies can hurt them too. Regarding the other mom who gets 40

hours of ABA therapy and their child does not have autism, I ask why

subject your child to a therapy that may not help but only frustrate

them. There are some members on this list that have a child with

apraxia and some who have autism or both. My children even though

adam was severe with his apraxia has improved along with josh.It has

taken a long time.Also there are many degrees of autism from mild to

severe too, with other behavioral,food allergies issues.

Autism/Apraxia is a diagnosis not a incurable disease.

Jeanne

[Guest guest]

Deborah-

" Would your preference be that any parents here who have a child with

apraxia and autism simply leave the group? Would it make matters here

more harmonious? I'm genuinely asking "

This is a ridiculous statement. You are twisting my words and my

intentions. I have been nothing but a sincere member of this group

since I joined a short while ago. My statement simply expressed the

anguish of parents everywhere whose child has undergone a

neurodevelopmental evaluation.

Do I deride children or parents of children with autism? NO, of course

not.

Do I want to hear input from everyone? Of course I do.

Is an autism diagnosis a scary thing to face? Yes, it is. I faced it

myself and I was terrified. Who wouldn't be? But to twist that

expression of fear into an expression of disdain is just not acceptable.

******************

(Rochester, NY)

Mom to , 3.1 years, Verbal Apraxia

& , 11 months

________________________________

From:

[mailto: ] On Behalf Of beaniesmum2001

Sent: Wednesday, June 28, 2006 4:05 AM

Subject: [ ] Re: SOCIAL PROBLEMS..

your comments are candid which is admirable.

They are difficult to consider without considering the implications.

Are the comments and experiences of parents who have a joint

diagnosis so distressing that it out weighs the possiblility that

they may have some useful imput for parents who are unsure of whether

they are purely dealing with a speechdisorder?Or the possibility that

there may sometimes be a cross over in terms of treatment as with

fish oils.

Is this why it is so very difficult to raise any question of a

possibility of some element of ASD because parents simply feel as

you do that " It was a scary place that I didn't want to visit again,

if I didn't have to. "

I think you are very honest to admit that especially as you must be

aware how dreadful it must sound to the parents of kids with asd .

asd.

What you say actually confirms what I have long suspected to be true -

that for many parents the idea of a diagnosis of autism is almost

debilitating and that if it is " just " apraxia they are almost hostile

to the idea of ASD being raised again.

It actually makes many of the recent discussions make sense if you

accept that for some they are highly motivated by the wish to place

any diagnosis of autism as far away as possible.

Would your preference be that any parents here who have a child with

apraxia and autism simply leave the group? Would it make matters here

more harmonious? I'm genuinely asking. I think I have actually said

before that it might be better for this particular group to declare

that its preference is for discussion about purely aparic kids. As

the same treatment for my son is treating both his apraxia and his

autism I have always wanted to hang around and get info on both but I

have lately felt unwelcome. It is not because the two matters are

incompatible but that the possibility of any crossover makes everyone

defensive. If it is uncomfortable for everyone perhaps it should be

considered? I think it would be a terrible loss of resources but I

confess it is draining to be constantly having to remember apraxia =

acceptable but autism = .....I don't know , but clearly something

intolerable

Best regards

Deborah

>

> I have always heard wonderful things about ABA. I would be the

first to

> start my daughter on an ABA program if she was on the spectrum. I

have

> never heard of ABA being used to treat " just " apraxia, though.

That is

> very interesting - Is that a real-life application for treating

> apraxia?

>

> " There is just general resistance to talking about anything that in

any

> way relates to autism here. "

> Can you really blame parents of apraxic, non-ASD kids being skittish

> about discussing autism? So many of us have been through the

wringer

> with fears and suspicions of autism. I can honestly say that, once

our

> family got past the neurodevelopmental evaluation *without* an ASD

> diagnosis, I never wanted to look back. Now that some time has

> passed, I can discuss it, but I cannot blame others for being

hesitant.

>

> Warm regards,

> ******************

> (Rochester, NY)

> Mom to , 3.1 years, Verbal Apraxia

> & , 11 months

>

[Guest guest]

This is my last statment on this topic.

" But seriously, if this list decides to ban discussion of autism... "

Deborah brought this up, not me. I NEVER suggested banning discussion

of autism.

" So I apologize for feeling you are fortunate! I don't

think it's negative that your child's doctors wanted to make sure that

they understood all of your child's issues - otherwise the treatment

would be less than optimal. "

Don't apologize. I DID feel fortunate and got derided for it. I was

glad that my daughter went through the evaluation - I never said

anything to the contrary. Was it agonizing? Yes. But I am glad that it

was done.

Obviously, this is a hot topic. I regret ever commenting about it in

the first place.

******************

(Rochester, NY)

Mom to , 3.1 years, Verbal Apraxia

& , 11 months

________________________________

From:

[mailto: ] On Behalf Of maryebe

Sent: Wednesday, June 28, 2006 12:42 PM

Subject: [ ] Re: SOCIAL PROBLEMS..

Hi Deborah and -

I think for any parents who are certain that their child does NOT have

autism, it should not be distressing to hear discussion about autism

and apraxia. I don't mean to sound unsympathetic, but I've been

through the gut-wrenching evals twice, with both my children, and both

times was told that my child DID have ASD (and that my youngest also

had apraxia). So I apologize for feeling you are fortunate! I don't

think it's negative that your child's doctors wanted to make sure that

they understood all of your child's issues - otherwise the treatment

would be less than optimal.

But seriously, if this list decides to ban discussion of autism, what

will happen to the parents who come here with fresh concerns, who are

not sure how to tell the difference? I spent a number of months (about

six) thinking that my oldest had apraxia (part of that time on this

list), only to eventually realize that he had ASD, and not apraxia.

The discussion about co-existing symptoms of sensory issues, social

problems, and motor delay can really confuse the situation (and I'm

speaking from my own experience), particularly if the majority are

saying that these symptoms should not raise any concerns of autism.

I've seen messages that implied misconceptions about autism as well -

for example, kids with autism are unaffectionate, they don't want to

interact with others, etc, which just aren't true across the board, or

even for the majority of children with ASD.

If all of us with kids who have both autism and apraxia feel unwelcome

and leave this group, I think parents who are new to the group may

unrealistically be given the impression that they don't need to worry

about their kid having autism. As hard as the autism dx is to hear,

it's much worse to look back with regret about the lost months without

appropriate intervention.

> >

> > I have always heard wonderful things about ABA. I would be the

> first to

> > start my daughter on an ABA program if she was on the spectrum. I

> have

> > never heard of ABA being used to treat " just " apraxia, though.

> That is

> > very interesting - Is that a real-life application for treating

> > apraxia?

> >

> > " There is just general resistance to talking about anything that in

> any

> > way relates to autism here. "

> > Can you really blame parents of apraxic, non-ASD kids being skittish

> > about discussing autism? So many of us have been through the

> wringer

> > with fears and suspicions of autism. I can honestly say that, once

> our

> > family got past the neurodevelopmental evaluation *without* an ASD

> > diagnosis, I never wanted to look back. Now that some time has

> > passed, I can discuss it, but I cannot blame others for being

> hesitant.

> >

> > Warm regards,

> > ******************

> > (Rochester, NY)

> > Mom to , 3.1 years, Verbal Apraxia

> > & , 11 months

> >

>

[Guest guest]

I too want to add to what Jeanie has already said. Both my children

have diagnosis that I wish they never had. Unlike some here when a

parent calls me and says they just had an evaluation and " Thank God

it's not apraxia, he just has a simple delay in speech " I agree

with them! Yes thank God for them. Not only did Tanner grow up

with severe apraxia both oral and verbal, but he also has to deal

with low tone and sensory issues and I am thankful that's all he had

to deal with and wish he had less. Some here are lucky enough to

have a child that 'just' has apraxia. Or just verbal apraxia!

As far as " Thank God it's not autism " why is that different all of a

sudden? Jeanie was correct in that there are degrees of things.

Severe apraxia is very different then severe autism as most know -

but there are those who have a child with mild autism without any

underlying speech impairment that overcomes the autism and can talk

fine and are mainstreamed just fine. On the other hand -once

apraxic always apraxic to some degree. Apraxia is an impairment of

speech. Jeanie's son Josh doesn't have a speech impairment -

he " just " has autism.

Besides, talk about being close minded here! Here's a safe place

for people to share. If a parent wants to say " Thank God it's not

autism " or " Thank God it's not apraxia " we should either delete the

message if we can't deal with that person's happiness, or show

misery doesn't always love company and be happy for that parent that

the child doesn't have to go through what our children did -years of

intensive therapy. I know I wish my children didn't have to go

through it! And that doesn't mean if your child has the condition

it's the end of the world -all have the chance to overcome in time.

Has anyone stopped to read the amount of stories in Chicken Soup for

the Soul? To look to see how many books they have on each subject?!

And as far as the twisting of words/ruffling feathers. Stating that

in most cases a therapy is not appropriate for a particular

condition is not negative about that therapy -it's negative about

that therapy with that condition it's not appropriate for. ABA in

most cases is not appropriate for apraxia, and if needed and used

then proceed with caution. For two reasons -you don't want to waste

precious time (years of intensive and expensive ABA and the child

remains non-verbal) and because of the horror stories from those few

child abusers drawn to become ABA therapists. And no that doesn't

mean all are horrible people -but this type of therapy attracts more

than it's share for some reason. What...I'm the only one that

noticed?!

Yes Marina there are horrible SLPs that have made a child cry -but

find an article about one that killed a child in therapy. I did not

say all ABA therapists are horrible, I said proceed with caution -

and because of the stats -'greater' caution than with any other type

of therapist or teacher.

Proceed with caution rules:

Make sure therapy is appropriate for your child's diagnosis. In my

opinion ABA is not appropriate for apraxia however if needed for co

existing other conditions than modified ABA may be tried.

Make sure you stay with your child during ABA therapy or at least be

able to come and go at any point during that therapy session. Two

way mirrors are great too.

Perhaps the stories we've heard about (lived through for those that

have) would not be happening if others were as outraged as I am. I

would believe ABA therapists (the good ones) should demand toughter

background checks and standards based on the unusual amount of

cases.

But Jeanie, thanks, because bringing it back to the Thank Gods, you

put it into perspective with your story. Danny died of cancer at 4

years old and I bet you would have given anything for him to

also " just " have apraxia, or autism, or ADHD, or asperger's, or all

of the above even! I bet your would have given anything just to

be able to say " Thank God he is alive " Four years old, little Danny

Buesser. God rest his soul.

Jeanie's story

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

=====

[Guest guest]

hi miche- ive heard the same thing as you - since autism is so well known

and apraxia is almost unheard of and i think the autism diagnosis is sort of a

catch all for anyone on the spectrum it fits in better with the education at

school- my son has apraxia and for those that think we should all be lucky and

grateful i would just like to say that we have to explain to people all the

time because they have never heard of it and i have also had professionals

tell me there has to be brain damage involved like a stroke- or that if my son

follows a command no matter how long it takes maybe i am wrong- one of the

teachers at school was told by the principal that one of the problems they have

is that there are a lot more children with special needs that do not have

asd and their parents are requiring special educational programs that make it

difficult for the educational system- am i surprised? NOT ONE BIT- I suspected

that all along. My son also has a lot of social and behavioral issues and i

have gone to his school and observed this class full of kids (MOST OF THEM ON

THE SPECTRUM) and have to confess that most of them were better behaved than

my own son. I do not mean to imply that apraxic kids have more behavior

problems , I just want to say everyone is different. It was the schools slp

that

suggested i contact the apraxia. kids group. Reading the Late Talker , 6

books about autism and being in this group has taught me how to deal with the

speech problems and although aba isnt recommended for an apraxic child I have

used it successfully . Josh is 74% INTELLIGIBLE after 2+ years of therapy-

Charlotte Henry

[Guest guest]

, Deborah and all who have contributed to this thread -

I have followd this conversation with great interest, at first because I did

not know what ABA was and then because I always find it interesting to see what

people have to say when they feel very strongly about a topic. I am also in the

middle of the exact situation that has been discussed. Does my ds have autism? I

just don't know. I don't think so, but.....we go to the dev ped

tomorrow....<sigh>

But now I wonder if the real reason we are all subscribe to this list has been

lost? Aren't we all here to gain information and help our children? Aren't we

here because there is so little in the way of published information available

and no concrete answers? Aren't we all here because the " professionals " haven't

had answers? Aren't we here to share our stories and talk to someone who is

experiencing the same thing or has been there, done that?

There is so little that is known about the causes of apraxia - what is going

on inside our little ones that prevents them from talking? Maybe there are

actually many causes and many different types of apraxia. Maybe not.... How will

we ever know if we don't all get together and share info? Staying informed is

the only tool we have as parents to help our children. When one approach isn't

working - we can say, " hey, what about this approach______? " Miche in NM

described that situation exactly. By being empowered wth knowledge she was able

to say this isn't working. We need to try another approach.

That does not lessen the heartache when you realize that time is ticking away

and your child is not getting better, even with months of therapy (autistic or

not). It is very normal to be in denial then angry or sad - etc. Remember the

stages of grief from psych 101? We (the parents on this list) are all in some

stage or another. I am angry...lol

I am here because my son is nearly three and doesn't freaking talk!!!!!!

Do I care what form of therapy they use, so long as it helps and does not

harm? No.

Do I want to feel that I can't post questions just because my son may have a

coexisting diagnois? No.

Should I be wary of posting if I disagree or am concerned with someone else's

post? No.

Deborah - I think it was your post months ago about having to get down on the

floor next to your son to calm him through a meltdown. I think of your story and

responses every time my son freaks out in public. It makes me smile on the

inside and gives me a little more strength to get through the rough patches. It

would be sad to lose you because of misunderstanding or what is likely just

crappy typing.

We could argue for days on PDD vs Autism vs Language Delay vs simple Apraxia.

It is an argument that can't be won - at least not at this point. Maybe someday.

How many parents have gotten different diagnosis from each professional they

have seen?

The best thing we can do is learn learn learn so we can help our children. How

else will we know when something is or isn't working?

Martha

[Guest guest]

Thank you, . Well said!

Kris

Mom to Grace, 27 mos.

On Jun 28, 2006, at 11:35 AM, Oakes, wrote:

> Deborah-

>

> " Would your preference be that any parents here who have a child with

> apraxia and autism simply leave the group? Would it make matters here

> more harmonious? I'm genuinely asking "

>

> This is a ridiculous statement. You are twisting my words and my

> intentions. I have been nothing but a sincere member of this group

> since I joined a short while ago. My statement simply expressed the

> anguish of parents everywhere whose child has undergone a

> neurodevelopmental evaluation.

>

> Do I deride children or parents of children with autism? NO, of course

> not.

>

> Do I want to hear input from everyone? Of course I do.

>

> Is an autism diagnosis a scary thing to face? Yes, it is. I faced it

> myself and I was terrified. Who wouldn't be? But to twist that

> expression of fear into an expression of disdain is just not

> acceptable.

>

> ******************

> (Rochester, NY)

> Mom to , 3.1 years, Verbal Apraxia

> & , 11 months

[Guest guest]

i hope anyone with a special needs child or anyone interested in special needs

will be interested and will take advantage of becoming a member in this group

please . we all have things to share with each other and there are similiar

things we can learn from each other that are not exclusive to a certain group of

people- charlotte henry

[ ] Re: SOCIAL PROBLEMS..

Hi Deborah and -

I think for any parents who are certain that their child does NOT have

autism, it should not be distressing to hear discussion about autism

and apraxia. I don't mean to sound unsympathetic, but I've been

through the gut-wrenching evals twice, with both my children, and both

times was told that my child DID have ASD (and that my youngest also

had apraxia). So I apologize for feeling you are fortunate! I don't

think it's negative that your child's doctors wanted to make sure that

they understood all of your child's issues - otherwise the treatment

would be less than optimal.

But seriously, if this list decides to ban discussion of autism, what

will happen to the parents who come here with fresh concerns, who are

not sure how to tell the difference? I spent a number of months (about

six) thinking that my oldest had apraxia (part of that time on this

list), only to eventually realize that he had ASD, and not apraxia.

The discussion about co-existing symptoms of sensory issues, social

problems, and motor delay can really confuse the situation (and I'm

speaking from my own experience), particularly if the majority are

saying that these symptoms should not raise any concerns of autism.

I've seen messages that implied misconceptions about autism as well -

for example, kids with autism are unaffectionate, they don't want to

interact with others, etc, which just aren't true across the board, or

even for the majority of children with ASD.

If all of us with kids who have both autism and apraxia feel unwelcome

and leave this group, I think parents who are new to the group may

unrealistically be given the impression that they don't need to worry

about their kid having autism. As hard as the autism dx is to hear,

it's much worse to look back with regret about the lost months without

appropriate intervention.