Re: How does the media see autism today? As DSI or as apraxia?

[Guest guest]

>

> There is a special on our local news right now on autism and they

are

> showing these kids playing appropriately with toys and each other –

> running around laughing and smiling -eye contact...but they can't

> talk –and when they showed one that tried he said the color

red " rah "

Hi , just wanted to quickly comment on your views of what an

autistic child 'looks' like. Maybe you don't realize that its a

spectrum disorder ranging from very mild to severe. I think the

numbers are rising on the really mild cases, but that is not fact,

just my opinion. Probably due to early intervention and biomed

interventions. That is what helped my son, although he was always

mildly on the spectrum. He attends regular school, has always been

one the smartest kids in the class, just happens to have issues like

apraxia and sensory issues that make it hard for him to tie his

shoes, write neatly even thou he scores way abovde his age level in

math. He also laughs, smiles and has excellant eye contact. He is

an awesome kid who is starting to like girls:) (he's now 10 yrs old)

He is everything you think is not autism, yet he is.

[Guest guest]

Point taken at the older age like your child....but the news segment

here was preschool children -so if these were the preschool children

today being diagnosed as autistic -how do you explain that? Autism

has morphed so much since it was first diagnosed that it's umbrella-

ed in many other diagnosis now from ADHD to DSI to apraxia...and

that's no fair for those children that are not autistic and require

appropriate therapies and placements for whatever it is that they do

have. Like I said in that one post about autism the musical -the one

boy clearly stated that he wanted to be placed in the mainstream and

didn't want to go to the special school. Who are we hurting in

trying so hard to help everyone with autism and lumping so many other

diagnosis together which may co exist with autism -but may not? The

misdiagnosed autistic children. They need awareness and a voice too!

=====

[Guest guest]

My son has a duel dx of ASD and apraxia. He is extremely social,

loves other kids, plays appropriatly, makes good eye contact, and

uses sign language and PECS. He also makes several good word

approximations which he he uses on a regular basis.

Of course, six months-ago when he was diagnosed he did not do any of

those things. Since then we have had extensive medical testing,

started a supplementation protocol that is appropriate for him

specifically, and done not only PROMPT and OT, but also Floortime and

ABA. (All together he has about fifteen hours of therapy a week.)

Does he still have ASD? Yes, as someone else pointed out, it is a

spectrum. Will have that dx forever? Not if his symptoms continue to

improve at this rate according to his neurodevelopmental

pediatrician. Thank goodness we have had it so far though because it

has given us access to all of those things I mentioned above. It has

also given me access to the incredibly supportive autism community.

I think that the media does have many misconceptions about autism -

as do many people in general obviously. But I think that those

misconceptions are based in the belief that children with autism do

not make eye contact, are not social, and do not communicate. (The

reason that many children with autism do not speak is that they have

motor-planning challenges - not because they don't want to - whether

they have an apraxia dx or not). Maybe in the " old days " only kids

who faced more severe challenges got a spectrum dx but now that the

new ASD dx is being used it covers even many kids who " just " have

apraxia and DSI. Thank goodness that those children will get access

to all of the help that the ASD dx can bring - as long as their

parents don't get too hung up on the label.

Nadine M. Silber, Esq.

[Guest guest]

Oh by the way. As an attorney, who has represented hundreds of

children who have special needs as a child advocate, I like to think

that I have pled MANY things in an " intelligent and articulate way " ...

despite the fact that I have Aspergers:-)

Best,

Nadine

[Guest guest]

Hi Nadine,

One of the moderators here is Jeanne Buesser who has one son with

apraxia and one with autism. She does outreach here for apraxia

because while there is a wealth of support, research, and awareness

for autism -there isn't for apraxia. There are far more children

with apraxia then there are with autism. The problem isn't the

diagnosis name -it's the inappropriate therapy that comes with it if

a child isn't autistic. For those who have children misdiagnosed-

the apraxia -the motor planning impairment goes unaddressed and the

child remains nonverbal. Some who have children diagnosed with both

autism and apraxia also find out that the autism diagnosis wasn't

accurate either and that also isn't a good situation. I am hearing

it from professionals that they are seeing children diagnosed with

autism today that are misdiagnosed and from this group. Sensory

integration dysfunction is not autism. Lack of speech is not

autism. And yes- autism used to be a social impairment...that's what

it is for Jeanne's youngest.

So if today autism presents like apraxia - it would be nice if when

the media wants to raise awareness about autism -they can at least

mention that the condition today presents exactly like another

condition called apraxia -but not to confuse the two because autism

therapy isn't appropriate for apraxia and can be detrimental.

Here's just a small amount of outraged parents just like me or

outraged professionals...I'm far from the only one. I noticed that

you are an attorney -Kim who I have 2 posts from below is a criminal

investigative attorney and her son was misdiagnosed and placed in

ABA -and it was a nightmare! The good news is that I clued her in

and she got him out and into appropriate therapy where he's doing

amazing. Like who was diagnosed with post traumatic stress

from ABA http://www.cherab.org/news/.html -Kim's son was

traumatized. This particular ABA therapist Kim said wasn't happy

unless her son cried and considered that a " breakthrough "

So if we are going to accept the slippery slope that autism today

means a child that is social -just can't talk -then I for one am

standing up against this. Oh wait- not the only one...

~~~~~~~~~~

Please, please don't let this person near your child again. I went

through

the exact same thing. I had all of your doubts. She was his very first

speech therapist. I didn't know what to expect. I trusted that she

was a

professional and knew what she was doing, blah, blah, blah! My

maternal

instinct and my poor child's actions told me to get rid of her the

very

first time she behaved like that but my doubts let it go on for 5

weeks.

Then I met

[Guest guest]

Perhaps if those that have misdiagnosed children want to file a class

action you can represent them. But not if you don't understand the

problem.

=====

[Guest guest]

Sorry - don't do class actions:-) I do agree with you that you

should find the appropriate therapy for YOUR child - regardless of dx

though. You just have access to more options when that dx is ASD.

Parents have an obligation to keep on top of what works and what

doesn't. For some kids on the spectrum, wherever they may fall, ABA

works. For others it does not. Much has to do with what type of

ABA - discrete trial, verbal behavior, errorless learning etc. and

how good the therapist is. Our therapist is very playful - never

demanding. Ethan does so well BECAUSE he is more apraxic than

autistic. He responds with such pride when he learns new skills:-)

It's how he has learned sign language and PECS. Every child is an

individual. I say treat the child not the dx. Also, regardless of

how busy you are, or how educated you are - do not allow your child

to continue with any therapy that is actually causing more

challenges.

Just as a final note, I have represented many many children who are

very social, very intelligent, and nonetheless genuinely autistic. I

do hope that more people eventually let loose all of those old

stereotypes. They are as outdated as the concept of the refriderator

mother.

I'm afraid that I don't have any further time to discuss this - busy

playing with my very very very loving and playful and social and

brilliant, and beautiful child who just happens to have ASD (at the

moment):-)

Best of luck to you:-)

Nadine

[Guest guest]

Reading through the archives, especially what I said about my son before, is

interesting. More interesting is that yet again my son is again labeled as

autistic.

The neuro psych actually said, " PDD-NOS because it will get him more

services and it's somewhere to place him. " Nice and specific, right? He saw

Semantic-Pragmatic Language Disorder (which most place on the spectrum as

the inverse of Aspergers - high social and low langauge) and I see a lot of

that as well, but it's such an uncommon diagnosis it doesn't really help in

anyway. This Dr. agreed with me that he doesn't come anywhere close to

meeting the DSM-IV criteria for autism. He also didn't " get " that he had

apraxia. He said I " placed too much on this motor planning thing. " and that

" I can understand everything he says, I don't see any speech production

problems. " My son only answered him in one word answers and he never really

tried to get him to talk. His apraxia has resolved enough that he is about

age appropriate in ONE WORD articulation tests. What this doctor did give

us was accurate minimally language based cognitive testing. And I do value

his opinions on that. This Dr. also had huge faith in the school system

about how they HAD to pay for ABA training as well as other supports. Guess

what? They won't. I've fought a fight for services in the last school

system and I honestly don't believe more ABA would help him either.

Two months before the neuro psych appointment the ped neuro said he wasn't

on the spectrum. His SLP of 2.5 yrs who brought him from under 100 yrs to

where he is now (still behind, but SO much improved!) still doesn't think he

fits there, although she does agree with some of the SPD traits. We both

feel his pragmatics are great so that doesn't fit. There may be a better

fit out there than SPD. His semantic stuff might also be explained by

aphasia with an unknown cause. None of this of course takes away the fact

that he was clearly apraxic at one point and he is still apraxic, but it

just doesn't show as much. Watch tapes from Aug 2005 or look at his VMPAC

scores and you'll see apraxia without a doubt!

The public school psychologist and SLP here do not believe he is autistic.

The sped coordinator who also tested him doesn't believe it either. Why

then did I agree to have his qualification as autism? Because it did get

him what he needs. The schools here, unlike our last district, understand

it's just on paper and not a label that describes all aspects of him. This

is the only reason I agreed. Had I insisted on just speech and language

impairment he would not qualify for a para. Why? His IQ is too high!

Autism gets you an aide, but other issues with high normal IQ doesn't! The

school here retested him and he scored around 70% for kids his age and in

the superior range on two of the four subtests, high normal on one and low

normal on the one that required the most receptive language. He would sink

in class without an aide. With his severe receptive and expressive language

issues he clearly needs a para so he can get verbal directions clarified

without interrupting the entire class or worse not speaking up and not

getting anything out of school.

So whether my son is on the very fringes of an autism diagnosis or not our

story makes it clear that autism does get you more in some ways and less in

others. Messing around with misdiagnoses or perhaps a mistake in the degree

of the autism cost my son two valuable years of appropriate therapy and

countless hours of strain on the family. I look back on all the hours of

frustration trying to teach him signing and PECS beyond when I felt

comfortable with it, and feel guilty that I let it hit that point. But at

the time I was guilted into it as well. When he didn't learn the next label

they tried to attach was " cognitive delays. " We now know that he clearly

doesn't have that! He had and has a language issue so signs didn't make

sense either! (Plus mild motor dyspraxia hindered that too.)

I strongly believe that we'd all be better of if other diagnoses had the

same weight behind them as autism. I think when kids like my son have every

therapy in the book thrown at them because of a label, it does a great

disservice to the truly autistic kids who really need those services, but

are told there is a wait list or they can only get half the hours they need.

I can definitively say that my son was misdiagnosed with " moderate autism. "

Perhaps he is somewhere on the ASD spectrum depending on how freely someone

chooses to expand it, but I still say he has apraxia and a severe language

disorder and it describes him much better!

Miche

[Guest guest]

Sorry, Xpost but I'm desperate for answers, desperate for hope and my

question seems to fit this topic. Wondering what diagnosis my child

is at now (27 months). Last summer after vaccine injury (18 months),

very little eye contact, would not turn to his name, same

indiscernable word over and over again, repetitive behaviors, not

interacting...now after biomed (diet/vitamins/supplements/chelation-

just started)...eye contact back, turns to his name, has about ten

words and a few sentences(articulation is an issue), OCD behavior

gone, loves to play with other kids (spent this afternoon playing

with two older children-mimicking, laughing, joint attention). What

concerns me is...he will say a very large word unprompted

like " toothbrush " , " kittycat " , " Where did it go? " etc., but has

trouble saying " Dada " , or " Mama " without prompting. An example of

this odd language development...I pointed at a lizard and said " look,

,lizard " ...he replied " alligator " . Big word for a 27 month old,

I thought. Even more profound was that he made the connection

between the visual of a lizard and an alligator. But he still only

says " Mama " when prompted and frequently leaves off the

M...saying " Ama " until I correct him. So my question to the group

is, given these remaining symptoms, does my son have autism? a

language disorder? Apraxi? The developmental pediatrician says

language disorder (which one he has no idea). The neurologist says he

seems " normal " to him. The speech therapist says " He's just a late

talker " . I just want to know what's wrong with my son. He has had

DAN! testing with high inflammation, oxidative stress and heavy metal

toxicity. Do you think he will ever recover or has irrepairable

damage been done by his vaccines? Please help.

Fri Mar 28, 2008 2:02 am

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>

> Reading through the archives, especially what I said about my son

before, is

> interesting. More interesting is that yet again my son is again

labeled as

> autistic.

>

> The neuro psych actually said, " PDD-NOS because it will get him more

> services and it's somewhere to place him. " Nice and specific,

right? He saw

> Semantic-Pragmatic Language Disorder (which most place on the

spectrum as

> the inverse of Aspergers - high social and low langauge) and I see

a lot of

> that as well, but it's such an uncommon diagnosis it doesn't really

help in

> anyway. This Dr. agreed with me that he doesn't come anywhere

close to

> meeting the DSM-IV criteria for autism. He also didn't " get " that

he had

> apraxia. He said I " placed too much on this motor planning thing. "

and that

> " I can understand everything he says, I don't see any speech

production

> problems. " My son only answered him in one word answers and he

never really

> tried to get him to talk. His apraxia has resolved enough that he

is about

> age appropriate in ONE WORD articulation tests. What this doctor

did give

> us was accurate minimally language based cognitive testing. And I

do value

> his opinions on that. This Dr. also had huge faith in the school

system

> about how they HAD to pay for ABA training as well as other

supports. Guess

> what? They won't. I've fought a fight for services in the last

school

> system and I honestly don't believe more ABA would help him either.

>

> Two months before the neuro psych appointment the ped neuro said he

wasn't

> on the spectrum. His SLP of 2.5 yrs who brought him from under 100

yrs to

> where he is now (still behind, but SO much improved!) still doesn't

think he

> fits there, although she does agree with some of the SPD traits. We

both

> feel his pragmatics are great so that doesn't fit. There may be a

better

> fit out there than SPD. His semantic stuff might also be explained

by

> aphasia with an unknown cause. None of this of course takes away

the fact

> that he was clearly apraxic at one point and he is still apraxic,

but it

> just doesn't show as much. Watch tapes from Aug 2005 or look at

his VMPAC

> scores and you'll see apraxia without a doubt!

>

> The public school psychologist and SLP here do not believe he is

autistic.

> The sped coordinator who also tested him doesn't believe it

either. Why

> then did I agree to have his qualification as autism? Because it

did get

> him what he needs. The schools here, unlike our last district,

understand

> it's just on paper and not a label that describes all aspects of

him. This

> is the only reason I agreed. Had I insisted on just speech and

language

> impairment he would not qualify for a para. Why? His IQ is too

high!

> Autism gets you an aide, but other issues with high normal IQ

doesn't! The

> school here retested him and he scored around 70% for kids his age

and in

> the superior range on two of the four subtests, high normal on one

and low

> normal on the one that required the most receptive language. He

would sink

> in class without an aide. With his severe receptive and expressive

language

> issues he clearly needs a para so he can get verbal directions

clarified

> without interrupting the entire class or worse not speaking up and

not

> getting anything out of school.

>

> So whether my son is on the very fringes of an autism diagnosis or

not our

> story makes it clear that autism does get you more in some ways and

less in

> others. Messing around with misdiagnoses or perhaps a mistake in

the degree

> of the autism cost my son two valuable years of appropriate therapy

and

> countless hours of strain on the family. I look back on all the

hours of

> frustration trying to teach him signing and PECS beyond when I felt

> comfortable with it, and feel guilty that I let it hit that point.

But at

> the time I was guilted into it as well. When he didn't learn the

next label

> they tried to attach was " cognitive delays. " We now know that he

clearly

> doesn't have that! He had and has a language issue so signs didn't

make

> sense either! (Plus mild motor dyspraxia hindered that too.)

>

> I strongly believe that we'd all be better of if other diagnoses

had the

> same weight behind them as autism. I think when kids like my son

have every

> therapy in the book thrown at them because of a label, it does a

great

> disservice to the truly autistic kids who really need those

services, but

> are told there is a wait list or they can only get half the hours

they need.

>

> I can definitively say that my son was misdiagnosed with " moderate

autism. "

> Perhaps he is somewhere on the ASD spectrum depending on how freely

someone

> chooses to expand it, but I still say he has apraxia and a severe

language

> disorder and it describes him much better!

>

> Miche

>

>

>

[Guest guest]

Time to pull out the DSM-IV. The diagnostic criteria that must be

met to obtain an autism diagnosis include social impairment,

communication impairment, and restricted repetitive and stereotyped

patterns of behavior, interests and activities.

The comment below, " Maybe in the " old days " only kids who faced more

severe challenges got a spectrum dx but now that the new ASD dx is

being used it covers even many kids who " just " have apraxia and

DSI. Thank goodness that those children will get access to all of

the help that the ASD dx can bring - as long as their parents don't

get too hung up on the label. "

There is no old and new diagnosis - the DSM-IV still states the same

diagnostic criteria as it did before. Children with apraxia and DSI

should NOT be diagnosed as autistic if they do not meet the

diagnostic criteria. My son never formally received an autism

diagnosis, but I can tell you that for several months the first two

therapists (OT and ST) tried to convince me that it was so and

treated him as such - and it was the worst few months of his life

(as well as mine). When, through devine intervention, I finally

learned about apraxia and asked them the question, " if he had an

apraxia diagnosis, would you be treating him differently? " They

said yes. So we went and got the apraxia diagnosis. Those two

didn't get a chance to treat him differently as we never returned to

their agency.

And don't even get me started on the spec ed preschool he spent

enduring 9 days of H-E-double hockey sticks because they felt that

the standard sensory diet they administered to the children with

autism would suffice just fine for my DSI boy despite the fact they

had been provided with his daily sensory diet. After those 9 days

he was nearly catatonic after being subjected to sensory input that

equaled 3x the amount he would normally get in a day. He didn't set

foot back in there again, either.

Sometimes the autism label does not serve an apraxic/DSI child well

and may even delay getting appropriate treatment.

Now , I thought you didn't want any more controversy

[Guest guest]

)

=====

[Guest guest]

I agree with this completely. But what happens to many (including my

family) is we get told that autism is " now a spectrum disorder. " Which is

it, but I think some apply it too liberally and kids like mine get lumped

into the PDD-NOS area where the criteria isn't as clear. When he received

the initial " moderate autism " misdiagnosis I was told I should be grateful

because it will open so many doors for him for services. In his case

services that didn't help and some hurt him. And what hurt the most is for

that time his true issues weren't being diagnosed or treated.

> There is no old and new diagnosis - the DSM-IV still states the same

> diagnostic criteria as it did before. Children with apraxia and DSI

> should NOT be diagnosed as autistic if they do not meet the

> diagnostic criteria.

>

[Guest guest]

That is the most important point to make, Nadine! Thank you. The dx

is just one of many tools to get what your child needs. Every kid with

autism or apraxia has different needs, and our focus as parents should

be on what our children need. My own two speech-delayed children don't

even have the same issues or need the same things. Just within this

one category called " apraxia " , there are different types: verbal,

oral, global. You can call it whatever you want as long as you are

providing a solution that works for my child. That's why I like the

NACD approach -- no labels, no dx, just solutions.

in NJ

>

> I do agree with you that you

> should find the appropriate therapy for YOUR child - regardless of dx

> though. You just have access to more options when that dx is ASD.

> Parents have an obligation to keep on top of what works and what

> doesn't.

[Guest guest]

Actually, most of our non-medical therapies are private ones which we

carefully selected based upon how well our son responded to them so I

can't say that we technically needed an ASD dx to get them. It helped

having therapists who could do more than just speech therapy or OT

though as even children who are not on the spectrum can learn many

great things with good teaching and play.

Where it did help was with mainstream medical doctors. We were able

to get a lot of testing done. Through that testing we were able to

put together an effective biomedical treatment that significantly

diminished pour son's sensory issues, and thus, his autistic

symptoms. (Just fish oil and vitamin E did not cut it for us - we

needed a mito cocktail similar to the one that has her son

on.) Doctors have told us that " apraxia " is just a symptom.

herself has written this on more than one occasion. Sometimes it is

a stand-alone symptom. Most often it is not.

" ASD " is just a set of symptoms. While it is true that the DSM

criteria has not technically changed if you actually speak with

professionals in the field, (developmental pediatricians,

psychologists etc.) you will learn that the ASD dx is " new " and is

purposely meant to be more inclusive. It is so that children can get

effective early intervention. You don't have to share that dx with

anyone whom you do wish to and you do not have tom accept services

that are not appropriate for your child.

I'm sorry to hear that others have had a difficult time finding

effective therapies. It is true that they are not always offered.

It really is tough having to research private therapists, use trial

and error to find out what works, often paying for them out-of-

pocket. It would be so nice just to be able to get what your child

needs easily. Much of our job as parents seems to be in educating

others about the common misconceptions about our children. I find

myself doing that all of the time:-)

Maybe the reason that I don't have a problem with Ethan having this

dx now is that I myself have had a dx and it has not held me back in

the least. Just like other moms, mine struggled to get me the

therapies I needed. She did and they worked well. While I am

not " cured " of my Aspergers I managed to become well educated.

successfull, happily married and the mother of two beautiful boys.

Nobody these days even knows that I am autistic - although

admittedly, they may find me a little quirky:-)

Also, I truly believe that he will lose this dx at the rate he is

going. His doctors agree. He is only 2.5 now and has been in

therapy since he was 18 months-old. By the time he is ready for big

kid school who knows. All I can say is that the dx has helped us.

I'm sorry if it has not helped you. It may help others though so

thanks for not encouraging people to waste time and energy with

arguing the point with doctors, educators, whomever that could be

better spent getting kids well.

And also thanks for not propogating the stereotype that children on

the spectrum are necessarily not intelligent, articulate, social,

etc. which was why I actually overcame my natural social anxiety to

write all of these messages:-)

Best wishes,

Nadine

[Guest guest]

> Reading through the archives, especially what I said about my son

before, is interesting.

I just rtead your longer message and I really am sorry that you have

had such a tough time. It must have been very difficult and I am sure

that you did everything that you could for your son at every turn. You

should not feel guilty about anything. I hope that things go well for

your little guy.

Best of luck,

Nadine

[Guest guest]

I completely agree. We, too, have a child that was misdiagnosed as

autistic by some therapists and one pediatrician and I had serious

doubts about the diagnosis. The more I learned about apraxia the

more I realized that Grace was not " on the spectrum " . We

finally had a neurologist put in writing that a diagnosis of autism

for our daughter was " categorically inappropriate " . And that ended

the debate among the therapists (and our pediatrician started denying

they had ever said it) of whether she was or whether she wasn't.

One thing I hear, on this board and other places, that terrifies me

is when a parent thinks that accepting an autism spectrum diagnosis

will result in an increase in school services. Nothing could be

further from the truth in most school districts. In many districts,

a diagnosis of classic autism will result in an increase in services

but those services are not specific to apraxia and therefore, may do

more harm than good. More importantly, in many districts, a

diagnosis of ASD (specifically PDD) results in a severe cut in

services. And ASD and autism are seen, in districts (not on the DSM,

just in the districts) as different entities and these kids are

staffed at different levels.

In our county the philosophy is this....

IDEA states that the school needs to provide those services that

allow a child to live independently and receive an education. For a

child with classic autism, this means they need many interventions to

help them with social skills, meeting societal norms, etc that will

need to be in place for them to one day (possibly) live independently

and/or have a job. For the PDD kid, they are seen as already having

enough of those skills and therefore do not require any additional

special services for the IDEA mandate to be met. Because they are

able to align this philosophy with the IDEA purpose statement,

parents have not been successful in fighting this staffing and the

lace of speech/OT/ etc. So, using their philosophy, in this

district, a child will get more services (and the parent will be able

to more effectively advocate for the child) if they actually kept the

apraxia diagnosis and didn't accept the PDD diagnosis.

The bottom line is that the wrong diagnosis can often lead to the

wrong therapy. And incorrect therapy modalities are never acceptable

simply because a child is receiving " more " therapy. It is not wise

to " accept " or " pursue " the wrong ASD diagnosis in the hopes of

increasing therapy time. The goal is not to get the apraxic child

more of any type of therapy. The goal is for the apraxic child to

receive additional services that are appropriate for his/her

diagnosis and their cognitive/social/emotional level, thus giving

them the greatest chance at success.

Kris

The Knitting Wannabe

http://www.knittingwannabe.com

Sonny & Shear: The I Got Ewe, Babe Yarn Shop

http://www.sonnyandshear.com

On Mar 27, 2008, at 10:14 PM, wrote:

> Time to pull out the DSM-IV. The diagnostic criteria that must be

> met to obtain an autism diagnosis include social impairment,

> communication impairment, and restricted repetitive and stereotyped

> patterns of behavior, interests and activities.

>

> The comment below, " Maybe in the " old days " only kids who faced more

> severe challenges got a spectrum dx but now that the new ASD dx is

> being used it covers even many kids who " just " have apraxia and

> DSI. Thank goodness that those children will get access to all of

> the help that the ASD dx can bring - as long as their parents don't

> get too hung up on the label. "

>

> There is no old and new diagnosis - the DSM-IV still states the same

> diagnostic criteria as it did before. Children with apraxia and DSI

> should NOT be diagnosed as autistic if they do not meet the

> diagnostic criteria. My son never formally received an autism

> diagnosis, but I can tell you that for several months the first two

> therapists (OT and ST) tried to convince me that it was so and

> treated him as such - and it was the worst few months of his life

> (as well as mine). When, through devine intervention, I finally

> learned about apraxia and asked them the question, " if he had an

> apraxia diagnosis, would you be treating him differently? " They

> said yes. So we went and got the apraxia diagnosis. Those two

> didn't get a chance to treat him differently as we never returned to

> their agency.

>

> And don't even get me started on the spec ed preschool he spent

> enduring 9 days of H-E-double hockey sticks because they felt that

> the standard sensory diet they administered to the children with

> autism would suffice just fine for my DSI boy despite the fact they

> had been provided with his daily sensory diet. After those 9 days

> he was nearly catatonic after being subjected to sensory input that

> equaled 3x the amount he would normally get in a day. He didn't set

> foot back in there again, either.

>

> Sometimes the autism label does not serve an apraxic/DSI child well

> and may even delay getting appropriate treatment.

>

> Now , I thought you didn't want any more controversy

>

>

>

[Guest guest]

Nadine I am proud of you for overcoming! Please continue to.

Perhaps it's my misunderstanding of what autism is too. I know many

children diagnosed autistic -and know it typically was a child that

needed to be encouraged to speak due to being in their own world -vs

needing help in actually learning how to speak because they are

apraxic. Here's a child that had severe behavior problems due to her

frustrations from not being able to communicate -but she's not autistic

she's apraxic -and without Liz to model for her she was essentially

nonverbal http://www.debtsmart.net/talk/halley.html But in today's

world she would be diagnosed autistic and placed in ABA which would

have been a nightmare for her as she is severe to profound apraxic with

severe motor planning deficits =Haley was with me with some PhD

professionals when we were interviewed for a TV segment on apraxia (one

of the only in the world)

http://www.cherab.org/news/phototrip2002.html

Saying that it's a stereotype to say autism has nothing to do with

social issues or eye contact -isn't that kind of like saying that

apraxia has nothing to do with speech? I don't say this to hurt you or

anyone else -but to clarify. You can find these statements all over

the net:

" One of the most characteristic symptoms of autism is a dysfunction in

social behavior. "

http://www.autism.org/social.html

Specification of Diagnostic Criteria

Rutter (1978a) documented the chaos that reigned for some years after

Kanner's early report, with a wealth of terminology (e.g. infantile

autism, childhood psychosis, childhood schizophrenia) being applied

inconsistently to children who had some or all of the clinical features

of Kanner's early cases.

Rutter discussed the question of how far autism could be regarded as a

syndrome and how it related to other conditions. He concluded that,

although there were still many unsettled questions, in order to avoid

ambiguity, investigators should adopt the following criteria in

relation to behavior before 5 years of age to define childhood autism:

http://www.mugsy.org/bishop.htm

I've thought about the choices on behalf of my own son who is growing

up in this crazy politically correct world where you can't call a pot a

pot -you have to call it a kitchen utensil because how do you know it's

a pot and not a pan?

So Tanner's either going ahead going to be known as being autistic

since today autism has nothing to do with social issues or eye contact

or playing appropriately and all it means is that the child has a

speech issue and possibly with or without sensory issues...which

explains the stat 1 in 150 children.

What about adults who get into a car accident and develop sensory

integration dysfunction -going ahead -would that be autism too?

On the other hand we have the even less appealing world of apraxia with

no funding for even clear evidence of what works -no awareness -no huge

media person that has a grandson with apraxia so that they can

produce " apraxia the musical " All we have is a lame world where some

want the name to be changed to " childhood apraxia of speech " and I have

an 11 year old. That name is adding insult to injury and parents of 3

year olds don't even see it coming yet to know to fight it.

So in that case I'm with you Nadine and Tanner is autistic.

So from what I'm hearing Tanner was misdiagnosed and should have been

diagnosed autistic? The new form of autism is a type that is

called " apraxia " where the child needs speech and occupational therapy

and unlike other autistics doesn't require ABA. So we have to separate

the apraxic autistics from the rest of the autistics? Only one

problem.....

What about those with for real autism and apraxia?

=====

[Guest guest]

Well said!

Kris

The Knitting Wannabe

http://www.knittingwannabe.com

Sonny & Shear: The I Got Ewe, Babe Yarn Shop

http://www.sonnyandshear.com

On Mar 28, 2008, at 1:24 PM, kiddietalk wrote:

> Nadine I am proud of you for overcoming! Please continue to.

>

> Perhaps it's my misunderstanding of what autism is too. I know many

> children diagnosed autistic -and know it typically was a child that

> needed to be encouraged to speak due to being in their own world -vs

> needing help in actually learning how to speak because they are

> apraxic. Here's a child that had severe behavior problems due to her

> frustrations from not being able to communicate -but she's not

> autistic

> she's apraxic -and without Liz to model for her she was essentially

> nonverbal http://www.debtsmart.net/talk/halley.html But in today's

> world she would be diagnosed autistic and placed in ABA which would

> have been a nightmare for her as she is severe to profound apraxic

> with

> severe motor planning deficits =Haley was with me with some PhD

> professionals when we were interviewed for a TV segment on apraxia

> (one

> of the only in the world)

> http://www.cherab.org/news/phototrip2002.html

>

> Saying that it's a stereotype to say autism has nothing to do with

> social issues or eye contact -isn't that kind of like saying that

> apraxia has nothing to do with speech? I don't say this to hurt you or

> anyone else -but to clarify. You can find these statements all over

> the net:

>

> " One of the most characteristic symptoms of autism is a dysfunction in

> social behavior. "

> http://www.autism.org/social.html

>

> Specification of Diagnostic Criteria

> Rutter (1978a) documented the chaos that reigned for some years after

> Kanner's early report, with a wealth of terminology (e.g. infantile

> autism, childhood psychosis, childhood schizophrenia) being applied

> inconsistently to children who had some or all of the clinical

> features

> of Kanner's early cases.

> Rutter discussed the question of how far autism could be regarded as a

> syndrome and how it related to other conditions. He concluded that,

> although there were still many unsettled questions, in order to avoid

> ambiguity, investigators should adopt the following criteria in

> relation to behavior before 5 years of age to define childhood autism:

> http://www.mugsy.org/bishop.htm

>

> I've thought about the choices on behalf of my own son who is growing

> up in this crazy politically correct world where you can't call a

> pot a

> pot -you have to call it a kitchen utensil because how do you know

> it's

> a pot and not a pan?

>

> So Tanner's either going ahead going to be known as being autistic

> since today autism has nothing to do with social issues or eye contact

> or playing appropriately and all it means is that the child has a

> speech issue and possibly with or without sensory issues...which

> explains the stat 1 in 150 children.

>

> What about adults who get into a car accident and develop sensory

> integration dysfunction -going ahead -would that be autism too?

>

> On the other hand we have the even less appealing world of apraxia

> with

> no funding for even clear evidence of what works -no awareness -no

> huge

> media person that has a grandson with apraxia so that they can

> produce " apraxia the musical " All we have is a lame world where some

> want the name to be changed to " childhood apraxia of speech " and I

> have

> an 11 year old. That name is adding insult to injury and parents of 3

> year olds don't even see it coming yet to know to fight it.

>

> So in that case I'm with you Nadine and Tanner is autistic.

>

> So from what I'm hearing Tanner was misdiagnosed and should have been

> diagnosed autistic? The new form of autism is a type that is

> called " apraxia " where the child needs speech and occupational therapy

> and unlike other autistics doesn't require ABA. So we have to separate

> the apraxic autistics from the rest of the autistics? Only one

> problem.....

>

> What about those with for real autism and apraxia?

>

> =====

>

[Guest guest]

Nadine has commented that kids on the spectrum can be sociable. I

think others are confusing what this term means. As far as I know,

it means enjoying being around other people and wanting to have

conversation. It's very possible to be ASD and sociable. I think

the confusion is ASD includes a problem with social SKILLS. They may

want to have conversations and be around other people, but often

misinterpret what is going on in the conversation. They may not

understand the nuances and miss inuendos and sarcasm. They may not

recognize the meaning of the other person's body language.

My 10 year old Aspie is EXTREMELY sociable yet, his actions are often

inappropriate. He will walk up to anyone and have a conversation.

But the conversation will consist of only him talking. He will

occassionally pause and let the other person speak, but he tends to

pick up right where he left off. The other person's comments are not

taken into consideration. If the other person looks away, he will

move to get right in front of their face. He doesn't interpret the

look away as someone who is uninterested in the conversation. His

eye contact is not great, but he does it well enough that no one ever

sees it as a problem.

Just wanted to support Nadines comments that being sociable does not

rule out ASD. You have to look at the social skills and see if they

are appropriate.

>

> Nadine I am proud of you for overcoming! Please continue to.

>

> Perhaps it's my misunderstanding of what autism is too. I know many

> children diagnosed autistic -and know it typically was a child that

> needed to be encouraged to speak due to being in their own world -vs

> needing help in actually learning how to speak because they are

> apraxic. Here's a child that had severe behavior problems due to

her

> frustrations from not being able to communicate -but she's not

autistic

> she's apraxic -and without Liz to model for her she was essentially

> nonverbal http://www.debtsmart.net/talk/halley.html But in today's

> world she would be diagnosed autistic and placed in ABA which would

> have been a nightmare for her as she is severe to profound apraxic

with

> severe motor planning deficits =Haley was with me with some PhD

> professionals when we were interviewed for a TV segment on apraxia

(one

> of the only in the world)

> http://www.cherab.org/news/phototrip2002.html

>

> Saying that it's a stereotype to say autism has nothing to do with

> social issues or eye contact -isn't that kind of like saying that

> apraxia has nothing to do with speech? I don't say this to hurt

you or

> anyone else -but to clarify. You can find these statements all over

> the net:

>

> " One of the most characteristic symptoms of autism is a dysfunction

in

> social behavior. "

> http://www.autism.org/social.html

>

> Specification of Diagnostic Criteria

> Rutter (1978a) documented the chaos that reigned for some years

after

> Kanner's early report, with a wealth of terminology (e.g. infantile

> autism, childhood psychosis, childhood schizophrenia) being applied

> inconsistently to children who had some or all of the clinical

features

> of Kanner's early cases.

> Rutter discussed the question of how far autism could be regarded

as a

> syndrome and how it related to other conditions. He concluded that,

> although there were still many unsettled questions, in order to

avoid

> ambiguity, investigators should adopt the following criteria in

> relation to behavior before 5 years of age to define childhood

autism:

> http://www.mugsy.org/bishop.htm

>

> I've thought about the choices on behalf of my own son who is

growing

> up in this crazy politically correct world where you can't call a

pot a

> pot -you have to call it a kitchen utensil because how do you know

it's

> a pot and not a pan?

>

> So Tanner's either going ahead going to be known as being autistic

> since today autism has nothing to do with social issues or eye

contact

> or playing appropriately and all it means is that the child has a

> speech issue and possibly with or without sensory issues...which

> explains the stat 1 in 150 children.

>

> What about adults who get into a car accident and develop sensory

> integration dysfunction -going ahead -would that be autism too?

>

> On the other hand we have the even less appealing world of apraxia

with

> no funding for even clear evidence of what works -no awareness -no

huge

> media person that has a grandson with apraxia so that they can

> produce " apraxia the musical " All we have is a lame world where

some

> want the name to be changed to " childhood apraxia of speech " and I

have

> an 11 year old. That name is adding insult to injury and parents

of 3

> year olds don't even see it coming yet to know to fight it.

>

> So in that case I'm with you Nadine and Tanner is autistic.

>

> So from what I'm hearing Tanner was misdiagnosed and should have

been

> diagnosed autistic? The new form of autism is a type that is

> called " apraxia " where the child needs speech and occupational

therapy

> and unlike other autistics doesn't require ABA. So we have to

separate

> the apraxic autistics from the rest of the autistics? Only one

> problem.....

>

> What about those with for real autism and apraxia?

>

> =====

>

[Guest guest]

Very good explanation! Most high functioning autistic kids I have seen are

very social. They like being around others and enjoy group play, but they

aren't always appropriate with their interactions. They get too close, or

too far away, or touch too much or not enough. And for the very verbal ones

they don't know when to stop talking because they can't read the non-verbal

cues of boredom or even verbal attempts to change the subject. All of this

is of course in comparison to their peers and appropriate developmental

levels.

Miche

On Fri, Mar 28, 2008 at 12:46 PM, elmccann <elmccann@...> wrote:

> Nadine has commented that kids on the spectrum can be sociable. I

> think others are confusing what this term means. As far as I know,

> it means enjoying being around other people and wanting to have

> conversation. It's very possible to be ASD and sociable. I think

> the confusion is ASD includes a problem with social SKILLS. They may

> want to have conversations and be around other people, but often

> misinterpret what is going on in the conversation. They may not

> understand the nuances and miss inuendos and sarcasm. They may not

> recognize the meaning of the other person's body language.

>

> My 10 year old Aspie is EXTREMELY sociable yet, his actions are often

> inappropriate. He will walk up to anyone and have a conversation.

> But the conversation will consist of only him talking. He will

> occassionally pause and let the other person speak, but he tends to

> pick up right where he left off. The other person's comments are not

> taken into consideration. If the other person looks away, he will

> move to get right in front of their face. He doesn't interpret the

> look away as someone who is uninterested in the conversation. His

> eye contact is not great, but he does it well enough that no one ever

> sees it as a problem.

>

> Just wanted to support Nadines comments that being sociable does not

> rule out ASD. You have to look at the social skills and see if they

> are appropriate.

>

>

>