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

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Nadine- I am glad to hear from an adult on the spectrum on board and I think

you can bring some of your perspectives as an adult to our support group.

There are many kids who have more than one diagnosis and get better quicker with

appropriate therapies and that is what we are about here. We like to find

out about the different therapies that are available and while one therapy may

not work for all we need to be informed.It sounds like you have really done a

lot of research and what you have tried has worked for your child. Whatever

works is the bottom line.

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Right, that is one of the significant characteristics, but if your child is

social that doesn't mean that the diagnosis is thrown out the window and

another one applied. Many Autistic kids are social, if you had one, or knew

one

first hand, you would know this. No one has all the characteristics of

specific disorder. Jen

> 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?

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Also....kids today are getting the proper therapies and alot of their

symptoms are disappearing! Years ago, many of the kids were left

to 'be in their own world " where today we know better. We are doing

not only reg therapies, but diet and supplements. My son responded

quickly to biomed and really no longer has symptoms of autism.

Does this mean he was mis-dx or he never had autism? I don't think so,

but he also carries an apraxia dx and could have just as easily been dx

with just apraxia/dyspraxia. BTW, he did have some ABA therapy way

back when he was two and three yrs old but if was a blended approach

using floortime. It worked well for him.

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I'm from New Jersey and of course know first hand children with

autism. I know a mom that tried everything that came down the pike (as

she said) extreme biomedical -all traditional and alternative

therapies. Money was not an object for this family and they spent more

than most anywhere -but there was no change. When I last spoke to her

when we still lived in NJ her son was 13 she was looking at some new at

that time genetic program to try to help. Her son was the classic

autistic child -and could no longer live in their home -would only come

home on visits once in awhile- because he was in his own world and

once in awhile would lash out -and he was getting too big to stop. It

became dangerous for her younger daughter. He was severe autistic.

I also know Sallie Bernard and her son (SafeMinds Cure Autism Now)

I knew children with PDD and apraxia. Hard to explain but kind of

going in and out autistic. Then I know those with just mild autism -speech

isn't an issue -but they have to be encouraged to talk.

Today's preschoolchild with autism is morphing once again and now looks and

sounds apraxic. I'm talking being diagnosed autistic- preschool age.

(before any therapy -they are social etc. just can't talk)

In addition to misdiagnosis hurting those that are misdiagnosed -my

fear is that the children with autism in the classic sense will be hurt

because autism for someone like the family with the teenager with

severe autism above can be tragic.

Jeanne's a moderator here and is very willing to state the difference

as she has one son with autism and one with apraxia -there is a

difference.

So how do you know it's not a misdiagnosis if your child is diagnosed

as autistic today? (preschool age -prior to therapy etc. social -just can't

talk)

Perhaps it's not about throwing out the diagnosis if the child is

social -perhaps it was a misdiagnosis to begin with -that's my point.

perhaps all should be a bit quicker to question a diagnosis. Because

when you lump too many things together -like saying everyone in the

hosptial is " sick " you end up hurting those who need this diagnosis the

most. Those that do have autism.

And you hurt those that are misdiagnosed which could be your child

(or today based on what I'm seeing -mine!!!)

Here's a list of other diagnosis it could be:

http://www.wrongdiagnosis.com/a/autism/intro.htm

=====

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I think it comes down to getting a dr you trust and being informed.

My son, a gfcf responder, as some autistics are, was described to me

by our new pediatrician as not autistic because he made eye contact.

He is not autistic, nor did I think he was then, but that was hardly

a thorough eval. I was never asked one question about abilities, etc.

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A lot of schools and peds use only screenings which just determine the

likelihood of being autistic. You really want an ADOS done by a

qualified clinical psychologist if there is any question about the

diagnosis. I'd question anyone who made a diagnosis based on eye

contact or any other single criteria (or someone who ruled out the

diagnosis on a single criterea).

When I suspected my son may be somewhere on the spectrum, I was

convinced the experts wouldn't see it. I found the Sohn Grayson

checklists which helped me identify the problems I was seeing. I

didn't recognize some of the quirky things as a sign of Asperger's.

This also helped me when it came time to explain to the developmental

pediatrician why I thought there was a problem.

See the checklists at

http://school.familyeducation.com/learning-disabilities/behavior/56323.html

>

> I think it comes down to getting a dr you trust and being informed.

> My son, a gfcf responder, as some autistics are, was described to me

> by our new pediatrician as not autistic because he made eye contact.

> He is not autistic, nor did I think he was then, but that was hardly

> a thorough eval. I was never asked one question about abilities, etc.

>

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In our case, my son was social and had eye contact when he was dx.

At first, they thought it was just a speech delay but then they saw

him stim! He was stim crazy way back then. So sometimes, he would go

to the playground and play with the other kids but couldn't talk...but

other times he was too busy stimming and would ignore the kids. Anyway,

he could usually blend well with the kids and people would always say

that he seemed too social to be autistic (pdd).

I know several families with children on the autism spectrum. Some are

severe, like a few you know.....but many of them are much more mildly

affected.

This conversation could go on and on......autistic or apraxic??

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>

> I'm from New Jersey and of course know first hand children

with

> autism. I know a mom that tried everything that came down the pike

(as

> she said) extreme biomedical -all traditional and alternative

> therapies. Money was not an object for this family and they spent

more

> than most anywhere -but there was no change. When I last spoke to

her

> when we still lived in NJ her son was 13 she was looking at some

new at

> that time genetic program to try to help. Her son was the classic

> autistic child -and could no longer live in their home -would only

come

> home on visits once in awhile- because he was in his own world and

> once in awhile would lash out -and he was getting too big to stop.

It

> became dangerous for her younger daughter. He was severe autistic.

>

> I also know Sallie Bernard and her son (SafeMinds Cure Autism Now)

>

> I knew children with PDD and apraxia. Hard to explain but kind of

> going in and out autistic. Then I know those with just mild

autism -speech

> isn't an issue -but they have to be encouraged to talk.

>

> Today's preschoolchild with autism is morphing once again and now

looks and

> sounds apraxic. I'm talking being diagnosed autistic- preschool

age.

> (before any therapy -they are social etc. just can't talk)

>

> In addition to misdiagnosis hurting those that are misdiagnosed -my

> fear is that the children with autism in the classic sense will be

hurt

> because autism for someone like the family with the teenager with

> severe autism above can be tragic.

>

> Jeanne's a moderator here and is very willing to state the

difference

> as she has one son with autism and one with apraxia -there is a

> difference.

>

> So how do you know it's not a misdiagnosis if your child is

diagnosed

> as autistic today? (preschool age -prior to therapy etc. social -

just can't talk)

>

> Perhaps it's not about throwing out the diagnosis if the child is

> social -perhaps it was a misdiagnosis to begin with -that's my

point.

> perhaps all should be a bit quicker to question a diagnosis.

Because

> when you lump too many things together -like saying everyone in the

> hosptial is " sick " you end up hurting those who need this diagnosis

the

> most. Those that do have autism.

>

> And you hurt those that are misdiagnosed which could be your child

> (or today based on what I'm seeing -mine!!!)

>

> Here's a list of other diagnosis it could be:

> http://www.wrongdiagnosis.com/a/autism/intro.htm

>

> =====

>

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Hello,

I'm new to this group and have been following this discussion very

closely as it directly pertains to my son. I'm concerned that he is

not getting the appropriate therapy and hope some of you can help

steer me in the right direction if I give a little background...

My son is now 26 months old and still makes very few

sounds/proto-words. We started working with EI therapists when he was

14 months old and at that time, my main concern was his lack of

babbling, lack of pointing, and his insistence on spinning toys. He

has made very little progress in speech with EI over the past year

working with a play specialist, OT, and SLP 1X/week. As the months

passed, the therapists became concerned about his joint attention

being inconsistent -- he was always very connected and made great eye

contact with social games/physical play, but became very introspective

with quieter play. I was also concerned that he may be apraxic as I

found him to have many of the " soft signs. " On his second birthday, I

was able to get him a speech evaluation with a highly regarded SLP who

specializes in apraxia. She said that she couldn't rule it out, but

he wasn't making enough sounds for her to diagnose and there seemed to

be " something else going on. " I was also finally able to get him two

developmental evaluations. One evaluation was done by a psychologist

at Children's Hospital Boston and another was done by a

multi-disciplinary team (neuropsych/SLP/developmental ped). Both gave

him a diagnosis of PDD-NOS, but stressed that he had a lot of great

skills and found most of his deficits/atypical behaviors to be largely

inconsistent.

Over the past two months, we have started working with the SLP who

specializes in apraxia in addition to continuing his weekly

appointments with the EI therapists. We are also about to start ABA.

At this week's appointment, the apraxia SLP said that he is extremely

challenging as he's not giving her anything to work with. As of

today, the only speech he produces is aya (for yes), mmm (for more),

ada (for all done and down), uppa (for up), and adee (for daddy) and

aba (for mommy, Elmo, Barney, and pretty much anyone else when asked

" who's that? " ) He also makes animal noises, but not with consonants.

He has a few signs and the ABA provider is about to start PECS.

Interestingly, in the past week, he's started pointing with approx 90%

consistency.

The apraxia SLP said she will try working with him for a couple more

weeks, but if she can't make any progress, she's going to suggest

taking a break until ABA brings him further along. Does this seem

reasonable, especially to those of you who have children w/ dual

diagnoses? Was this your experience? Is it possible that my son is

not producing more speech because he may be apraxic and would

therefore require more, not less speech therapy in addition to the

ABA? I apologize for the long monologue, but any insight would be

greatly appreciated!

> >

> > I'm from New Jersey and of course know first hand children

> with

> > autism. I know a mom that tried everything that came down the pike

> (as

> > she said) extreme biomedical -all traditional and alternative

> > therapies. Money was not an object for this family and they spent

> more

> > than most anywhere -but there was no change. When I last spoke to

> her

> > when we still lived in NJ her son was 13 she was looking at some

> new at

> > that time genetic program to try to help. Her son was the classic

> > autistic child -and could no longer live in their home -would only

> come

> > home on visits once in awhile- because he was in his own world and

> > once in awhile would lash out -and he was getting too big to stop.

> It

> > became dangerous for her younger daughter. He was severe autistic.

> >

> > I also know Sallie Bernard and her son (SafeMinds Cure Autism Now)

> >

> > I knew children with PDD and apraxia. Hard to explain but kind of

> > going in and out autistic. Then I know those with just mild

> autism -speech

> > isn't an issue -but they have to be encouraged to talk.

> >

> > Today's preschoolchild with autism is morphing once again and now

> looks and

> > sounds apraxic. I'm talking being diagnosed autistic- preschool

> age.

> > (before any therapy -they are social etc. just can't talk)

> >

> > In addition to misdiagnosis hurting those that are misdiagnosed -my

> > fear is that the children with autism in the classic sense will be

> hurt

> > because autism for someone like the family with the teenager with

> > severe autism above can be tragic.

> >

> > Jeanne's a moderator here and is very willing to state the

> difference

> > as she has one son with autism and one with apraxia -there is a

> > difference.

> >

> > So how do you know it's not a misdiagnosis if your child is

> diagnosed

> > as autistic today? (preschool age -prior to therapy etc. social -

> just can't talk)

> >

> > Perhaps it's not about throwing out the diagnosis if the child is

> > social -perhaps it was a misdiagnosis to begin with -that's my

> point.

> > perhaps all should be a bit quicker to question a diagnosis.

> Because

> > when you lump too many things together -like saying everyone in the

> > hosptial is " sick " you end up hurting those who need this diagnosis

> the

> > most. Those that do have autism.

> >

> > And you hurt those that are misdiagnosed which could be your child

> > (or today based on what I'm seeing -mine!!!)

> >

> > Here's a list of other diagnosis it could be:

> > http://www.wrongdiagnosis.com/a/autism/intro.htm

> >

> > =====

> >

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Hi there,

Two things you said stuck out as possibly similar to our story. 1)

The pointing: My son pointed late and when he did the poting was

incorrect, with the whole hand rather than the finger at first. We

later were told by the gastroenterologist that as a gut impaired

child his stomach acids may have wound up in that hand area creating

a near arthritic condition. Removal of allergins has helped thatand

the pointing is good.

Introspective play. My son does not have this but there was a time

when he seemed aloof when asked questions. Turns out he had vision

issues that when addressed, took away what at first blush seemed to

be receptive language issues and motor planning stuff.

I am not for one second saying these are your answers or issues, just

sharing a story and saying sometimes rulin out things helps clarify

what you are dealing with.

Dr. generously listed some apraxia labs that may help you:

/message/53124

And since you seen to be near Boston this may help you determine if

there is a metabolic issue underlying some of this:

http://www.vsan.org/rok-az/misc/Metabolic_Geneticist.pdf

> > Jen,

> > Jeanne here. I have to chime in both my boys have different

> > diagnosis'. Adam my oldest has apraxia and was diagnosed at age 2,

> > now almost 13. Josh who is diagnosed with pdd at age 2, now

almost 9.

> > the big difference between the two is Adam couldn't pronouce any

> > sounds of speech just said mmmm only, had low muscle tone in his

face

> > and cheeks when he was born, and it wasn't until 6-7 that we were

> > able to understand Adam because of his jargon and articulation

> > issues.Josh who was in his own world and didn't listen to his

name,

> > was clearly autistic, and repeated certain sentences and phrases

that

> > he saw on tv or like to hear on his computer games. At the same

time

> > Josh' words at the beginning came slowly but was not really

sociable

> > but he was able to say the full word even though we had to coax it

> > from him ages 3-4 until he could repeat a whole sentence. Which he

> > does now. I certainly wouldn't have given Adam ABA therapy

because

> it wasn't the right therapy for him, but for Josh absolutely.

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I was not going to respond anymore on this topic but I feel I must. First

of all we cannot blame the school systems. For one thing, if a child displays

sensory behaviors and stimming behaviors, they are going to be treated the

same way a child on the spectrum would be treated. These behaviors fall under

the ASD umbrella and since sensory integration disorder is not yet an

official medical diagnosis this is all these therapists have to work with. If

you

are lucky and have a Dr that agrees with the sensory integration theory they

can give a referral to an occupational therapist. Autism and sensory

integration disorder share many of the same symptoms, difficulty with sensory

processing, Lack of eye contact, flapping of hands, over sensitivity to sound

can

also accompany Sensory integration disorder. MMMM Sounds similar to the

autism spectrum. Now not all children with sensory integration disorder have

autism spectrum disorders and are not necessarily Autistic, but don't be so

quick to rule it out either. I felt really upset yesterday when I was being

challenged that my child may not have the correct diagnosis. I feel that it was

researched and he has a good Dr and everyone at the moment agrees with the

diagnosis. My son is getting the services he needs, I am not worrying about

the

insurance piece I am going forward with what I believe. Sure I wish my son

didn't have Autism, it doesn't change how much I love him and I don't want

another son. I guess what I am getting at is, with the symptoms so much the

same, how can you blame people who diagnose when it isn't even an official

medical diagnosis. The treatment for the sensory issues is the same and it

seems

like there is all this negativity that a child may be grouped into a category

with an Autistic child and that would be so terrible wouldn't it? It is

complex and it is difficult for all involved, I just wanted to say don't rule

out anything until you have all the pieces of the puzzle, and don't give advice

like you know for sure a child has DSI over Autism, you don't know that, and

it causes a lot of problems for Mother's that have children with autism.

Not wanting a debate, just wanting to explain how I feel, and I think that is

something we can do here, right? Jen

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

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Hi " Juladler " , have you considered heavy metal toxicity? As someone

else in this thread mentioned, it is common to misdiagnose heavy

metal poisoning as apraxia. You can get a porphyrin urine test

completed by this French lab. Its easy to do. Just get a pediatric

urine bag from your local hospital/clinic and put in on your child

when they fall asleep. Mail it in the morning. A DAN! doctor could

help you order the test (or another physician who understands that

blood tests only detect recent heavy metal exposure).

http://www.labbio.net/pages/autisme_envir_intoxication_eng.htm--- In

, " ilizzy03 " <lizlaw@...>

wrote:

>

> Hi there,

>

> Two things you said stuck out as possibly similar to our story. 1)

> The pointing: My son pointed late and when he did the poting was

> incorrect, with the whole hand rather than the finger at first. We

> later were told by the gastroenterologist that as a gut impaired

> child his stomach acids may have wound up in that hand area creating

> a near arthritic condition. Removal of allergins has helped thatand

> the pointing is good.

>

> Introspective play. My son does not have this but there was a time

> when he seemed aloof when asked questions. Turns out he had vision

> issues that when addressed, took away what at first blush seemed to

> be receptive language issues and motor planning stuff.

>

> I am not for one second saying these are your answers or issues,

just

> sharing a story and saying sometimes rulin out things helps clarify

> what you are dealing with.

>

> Dr. generously listed some apraxia labs that may help you:

>

>

/message/53124

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I don't think was blaming schools as I believe she works in a

school. I think the general point is we have to realize all the

systems that affect our kids, legal, educational, and to some extent

medical, have their limits and we as parents have to be a sort of

hybrid secretary in all this to help our children get the right

medical, educational, and legal supports.

>

> I was not going to respond anymore on this topic but I feel I

must. First

> of all we cannot blame the school systems. For one thing, if a

child displays

> sensory behaviors and stimming behaviors, they are going to be

treated the

> same way a child on the spectrum would be treated. These

behaviors fall under

> the ASD umbrella and since sensory integration disorder is not yet

an

> official medical diagnosis this is all these therapists have to

work with. If you

> are lucky and have a Dr that agrees with the sensory integration

theory they

> can give a referral to an occupational therapist. Autism and

sensory

> integration disorder share many of the same symptoms, difficulty

with sensory

> processing, Lack of eye contact, flapping of hands, over

sensitivity to sound can

> also accompany Sensory integration disorder. MMMM Sounds similar

to the

> autism spectrum. Now not all children with sensory integration

disorder have

> autism spectrum disorders and are not necessarily Autistic, but

don't be so

> quick to rule it out either. I felt really upset yesterday when I

was being

> challenged that my child may not have the correct diagnosis. I

feel that it was

> researched and he has a good Dr and everyone at the moment agrees

with the

> diagnosis. My son is getting the services he needs, I am not

worrying about the

> insurance piece I am going forward with what I believe. Sure I

wish my son

> didn't have Autism, it doesn't change how much I love him and I

don't want

> another son. I guess what I am getting at is, with the symptoms

so much the

> same, how can you blame people who diagnose when it isn't even an

official

> medical diagnosis. The treatment for the sensory issues is the

same and it seems

> like there is all this negativity that a child may be grouped into

a category

> with an Autistic child and that would be so terrible wouldn't it?

It is

> complex and it is difficult for all involved, I just wanted to say

don't rule

> out anything until you have all the pieces of the puzzle, and

don't give advice

> like you know for sure a child has DSI over Autism, you don't know

that, and

> it causes a lot of problems for Mother's that have children with

autism.

> Not wanting a debate, just wanting to explain how I feel, and I

think that is

> something we can do here, right? Jen

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?

video=15 & ncid=aolhom00030000000001)

>

>

>

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you say " MMMM Sounds similar to the autism spectrum. "

Most children with apraxia use one sound over and over to communicate

because they don't know how to move their tongue or mouth on command

and for whatever reason most say " mmm " -that is not autism -there's

probably a ton of reasons why a child will only say " mmm " including

they are hearing impaired -that's where differential diagnosis comes

in. My son said " no " by stamping his foot and

saying " MMM " He would say " ABC 123 " by saying " mm " in the same tone

as it says in the archives. When Tanner was 3 he souned the most like

when she says abc 123 except he would just say " mmm " in place

of any other sound

http://www.debtsmart.net/talk/sarah.html

There weren't as many kids on the Talking Page when Tanner was first

diagnosed-and listening to at 5.9 years old made me cry

http://www.debtsmart.net/talk/brandon.html

Problem is that wasn't diagnosed apraxic until he was 5 years old!

Some of you with misdiagnosed children are missing precious time.

As we've said a few times you would need a speech and occupational

therapy exam, and a neurodevelopmental medical exam from a pediatric

neurologist or developmental pediatrician to confirm or rule out

apraxia. You don't need a psychological exam for apraxia as apraxia

is not a psycholgical disorder.

DSI is also not autism and is found not just in children but in

adults with TBI after say a car accident. Have you read The Out Of

Sync Child? We also cover this in The Late Talker book. Like

hypotonia -it's a " soft sign " and below are two archives from years

ago to show that this is something that has been confused before.

I understand that there is much more money in autism then any other

disorder just about right now -but that doesn't mean we lump every

child in the world as autistic as (again) autism therapy is not

appropriate for anyone but an autistic child.

from an archive on this as this too has come up before and here is a

quote on what is appropriate for autism therapy from the CDC -but

you'll find this all over the net. Speech therapy isn't even

mentioned!

~~~~~~

" People with autism can make progress if they receive appropriate,

individual intervention. Pre-school children who receive intensive,

individualized, behavioral interventions show good progress. In

addition, limited pharmacological interventions are available to

treat symptoms associated with autism. " (from the same page of the

CDC that says that 70 to 75% of autistics are mentally retarded.

And the last point -apraxia is not a cognitive disorder, and most

apraxics have average to above average IQ)

http://www.cdc.gov/nip/vacsafe/concerns/autism/autism-facts.htm#Treatable

So final point -if one is going to " vehemently tell you " what is

part of the autism spectrum -again -define what that means.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Re: Difference between dyspraxia, SID and high functioning autism?

-DSI appears to be a symptom in various diagnosis today -it

does not mean autism.

" Who it effects

12-30% of all children

Some type

70% of children with learning disorders

Autism

ADHD

Premature infants

Anxiety

Head trauma

Commonly seen in boys

80% "

www.public.coe.edu/~mbaker/baker/neuro/lectures/~Sensory%20Integration%20Dysfunc\

tion%20-%20Ricca%20Klein.ppt

So if sensory issues are there chances are it could be a number of

reasons...on the other hand -if social issues are not there -perhaps

autism is a misdiagnosis. (happens too often...check the archives)

" The hallmark feature of autism is impaired social interaction.

Parents are

usually the first to notice symptoms of autism in their child. As

early as

infancy, a baby with autism may be unresponsive to people or focus

intently on

one item to the exclusion of others for long periods of time. A child

with

autism may appear to develop normally and then withdraw and become

indifferent

to social engagement. "

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

Apraxia is not a social disorder it's a motor planning disorder, but

typically

today it is multifacted and includes DSI, mild hypotonia or some

other soft

sign. Here's some on what is apraxia from the CHERAB site:

http://www.cherab.org/information/speechlanguage/verbalapraxia.html

(more in The Late Talker book)

Not that it's asked -but difference between late talking and apraxia

http://www.cherab.org/information/latetalkerhandout.html

Below is an archive on more:

Re: Apraxia...Dyspraxia...Autism....I am so confused!

Hi Shane and Robin!

Sensory Integration Dysfunction or DSI, is a separate unique

diagnosis that can stand alone or be found co existing in other

conditions -including but not limited to autism. Sensory Integration

Dysfunction can go undetected when mild, or could be acquired after

a head injury, or as a symptom of Transverse Myelopathy.

http://www.hopkinsmedicine.org/jhtmc/clinical.htm

Again just because it looks, talks and walks like a duck -could be a

kid trick or treating..doesn't mean it's auto-autism.

(either that or you can get autism from a car accident if you hit

your head and develop sensory issues!)

Sounds like you are doing all the right things just in case -and

that's the best way to go. As you may recall from your brother -

therapy for autism itself is not the same as therapy for apraxia.

There is not enough ST and OT in ABA approaches. Therapy for

sensory issues however are always appropriate for anyone who is

diagnosed as having sensory issues -no matter what the other

diagnosis are. Find out what each diagnosis is that you are dealing

with and provide appropriate therapies for each and it won't be so

confusing. At 24 months your child could be diagnosed with oral

apraxia -but not verbal. At 24 months typically the diagnosis would

be suspected apraxia and you could start appropriate therapy for

apraxia just in case. Won't hurt and could help if not

apraxic...but will be invaluable if apraxic.

And in the US -apraxia and dyspraxia mean the same thing.

Take one step at a time -we are here for you as a group and we have

tons of parents and professionals here who can lead you down the

early stages of the road you are now on. And it's great you read

The Late Talker...I'm one of the co authors and know we put info in

there to help parents just like you!

~~~~~~~~~~

I don't disagree that the rise in multifaceted neurologically based

communication impairments can have overlaps in symptoms -such as

sensory integration dysfunction for example, but then again -having

sensory integration dysfunction does not mean you are on the

autistic spectrum. And if it does it means adults who sustained

traumatic brain injuries (TBI) due to a car accidents can be

diagnosed as on the autistic spectrum too.

" What Disabilities Can Result From a TBI?

" Many TBI patients have sensory problems, especially problems with

vision. Patients may not be able to register what they are seeing or

may be slow to recognize objects. Also, TBI patients often have

difficulty with hand-eye coordination. Because of this, TBI patients

may be prone to bumping into or dropping objects, or may seem

generally unsteady. TBI patients may have difficulty driving a car,

working complex machinery, or playing sports. Other sensory deficits

may include problems with hearing, smell, taste, or touch. Some TBI

patients develop tinnitus, a ringing or roaring in the ears. A

person with damage to the part of the brain that processes taste or

smell may develop a persistent bitter taste in the mouth or perceive

a persistent noxious smell. Damage to the part of the brain that

controls the sense of touch may cause a TBI patient to develop

persistent skin tingling, itching, or pain. Although rare, these

conditions are hard to treat. "

http://www.ninds.nih.gov/disorders/tbi/detail_tbi.htm

And it's not just apraxics assumed part of the spectrum. If you

want to talk theory

" Quick Index to the Theories of Autism

Mehl-Madrona, M.D., Ph.D.

Opioid Excess Theories

Opioid-like substances

Dipeptidyl peptidase deficiency

Dermorphin and Sauvagine

Opioids and secretin

Opioids and glutathione

Opioids and immunosuppression

Gluten/Casein Theories and Relation to Celiac Disease

Opioid receptors

Urinary IAG

Fatty Acids

Gamma Interferon Theory

Free Sulphate Theory

Other Sulfation Problems in Autism

Cholocystokinin and Autism

Oxytocin and Vasopressin in Autism

Autism and Amino Acids

Methylation Theory of Autism

Stress and Immunity

Autoimmune Theory

Antibodies to Myelin Basic Protein Found in Autistic Children

Viral Infection Theory

Vaccinations and Autism

DPT and brain damage

MMR vaccine and autism

Research on MMR, Autism Connection Compared

Elevated Rubeola Titers and MMR Vaccine

Vaccination During Pregnancy and Risk for Autism

Vaccination and the risk for autism

Action of Secretin Theories

Secretin and cAMP

Lectins and secretin

Intestinal Permeability Theories

The Concept of Increased Intestinal Permeability

Gastrointestinal Abnormalities Among Children with Autism

Binstock's Anterior Insular Cortex Hypothesis for Linkage Between

Gut and Brain

Prenatal Aspartame Exposure

Vitamin A Deficiency and Autism

Orphanin Protein: Orphanin FQ/nociceptin (OFQ/N)

Smoke and Air Pollution May Be Related to Learning and Behavioral

Problems

http://www.healing-arts.org/children/autism-overview.htm

Perhaps -looking at the oh so many clinically researched theories

above... so much is assumed as part of the autism spectrum vs. say

the sensory integration spectrum, communication impairment spectrum

or " Prenatal Aspartame Exposure spectrum " because autism is where

the funds for research are? I mean why have the tail wag the dog

when there are over far more with communication impairments in this

world

without autism?

~~~~~~~~~~~~~~~~~~~~~

=====

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Thank you so much for your responses. I am going to start looking

into more of the biomedical approaches and will definitely send away

for the porphyrin urine test, but I'd like to start with ABA and fish

oil so that I can keep track of what is working and what isn't.

After reading all of the messages on this topic, however, I'm still

confused as to whether I'm getting my 2 year old the correct therapy.

Can someone please tell me how I would know if his delayed speech is

due to apraxia vs. ASD? The speech therapists tell me that he doesn't

give them enough to work with because he doesn't try to talk despite

encouragement. But, my husband and I have found that when he is

really excited about something and tries to say a word like mama, it

consistently comes out wrong. And when we hear him babble ma ma ma

ma, and try to get him to repeat it, he can't or won't. Does this

sound like speech delay due to apraxia vs. autism?

Thanks again for your help!

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One question I love to ask parents is this -on his second birthday

did he blow the candles out on his cake? If you can imagine trying

to do this without moving your lips -that's how my son tried and of

course couldn't. That would be a sign of oral apraxia that could be

diagnosed before 3.

You say you took your child to a well known SLP in the world of

apraxia -but problem is some of the classic signs of apraxia (and

thus some of the well known SLPs in this area) do not acknowledge the

multifaceted aspects of apraxia. Apraxia used to be rare and just

like autism has morphed from 50 years ago -so has apraxia. Today

it's rare to find a child here with " just " verbal apraxia even though

most parents of newly diagnosed children only know about the verbal

part. You are already a step ahead in that you notice some " soft

signs " And that's great because early detection leads to early

intervention. Earlier is always better as we all have the goal to

get our children up to speed by kindergarten.

Have you taken your child to a knowledgeable pediatric neurologist or

developmental pediatrician yet because if your child is not autistic

you do not want ABA therapy as it's not appropriate and can be

detrimental. Of course on the other hand your child could be

diagnosed with both apraxia and autism -and then you could seek

appropriate modified ABA with a therapist that is knowledgeable about

apraxia -but you don't want ABA therapy for the apraxia.

I would hold off on the complex biomedical aspects until you secure an

appropriate diagnosis and begin appropriate therapies and start the

fish oils and vitamin E. As Dr. says -give that at

least a few months. Most of us never had to do anything but what was

mentioned in the archives or The Late Talker -therapy and EFAs. I

know today people here are a bit over enthusiastic about all they do -and it

makes other new parents feel guilty as if they are not doing enough.

If your child is doing well on the basics then that's all that

matters. Most that have children doing well today are not here

everyday posting anymore -but I assure you that they knew about

everything but didn't jump into doing everything.

(and like me didn't have to -and I have 2 one apraxic -one ADHD!!)

I have been told just like posted that due to frustration

aparxic children can exhibit signs that may appear as autistic which

fade as alternative forms of communication are provided. PECS which

you are already doing -and simple sign.

Here's a short message about a few types of therapies for apraxia

from Rhonda from ECHO of Canada who is one of my other co founders of

Speechville.

Some more information for the group:

The Kaufman kit is a set of large laminated cards, with very bright

and colourful pictures on one side of the card, and approximations on

the other side. For example, " apple " . You show the card to the child.

Then work your way up through the approximations -- the most

important thing is to accept approximations for the word. What I

would do is show Maddie the picture. She would say: " ah-puh " . I would

then say back to her the next approximation (they are printed on the

other side of the card), which is " a-puh " . If she was able to do

that, I would then go to the next approximation: " ah-po " , and so on.

If she was not able to do an approximation I would stop. Of course,

the approximations go up to the correct pronunciation of the

word, " apple " . I found it very helpful to be able to guide Maddie to

the correct pronunciation of the word using the cards as a guide. I

worked with her for about 6 months with the first kit, and she is

ready for the second kit. The most important thing is that Maddie

LOVES the cards, she calls them her " toy " -- She will pick up the box

(no mean feat) and bring it over to me saying: " I want play this toy

Mommy " . Talk about successful therapy techniques!!

http://www.speech-express.com/KaufmanKitArticle.html

" Easy Does it for Apraxia " is a set of two workbooks, and the only

place you can get it is from LinguiSystems --

http://www.linguisystems.com I got the Preschool version, which is

for ages 2-6. There is a Materials Book and a companion therapy

Manual, which describes how to use the materials.

Another wonderful book is " The New Language of Toys: Teaching

Communication Skills to Children with Special Needs " by Sue Schwartz

and Joan Heller , also available through CHERAB.

Hope this helps,

Rhonda son Cherry

mom to Maddie, age 4, oral-motor sequencing issues, suspected

apraxic, DSI

Richmond Hill, Ontario CANADA

As far as imagination -many of us found this to be a delayed area in

our apraxic child- here's a long archive on that too.

From: " kiddietalk " <kiddietalk@...>

Date: Wed Aug 4, 2004 10:26 am

Subject: Re: Importance of Play

Hi Candi!

I can relate to what you are going through -and can say that in most

cases " this too shall pass " unless there 'are' other issues.

Below are some archives -quite long, but we are on our way (again)

for some ride therapy so can't edit what's here. Just a quick

update -Dr. Jonas yesterday, amazed at the surges Tanner has gained

across the board in speech is quite interested in exploring more of

this type of(vestibular stimulation?)therapy for children. We are in

plans

to

move ahead.

Anyone in Florida wanting more info -stay tuned. We'll probably

need a few children that want to play! Speaking of which -does

anyone know anything about Heelys? http://www.heelys.com/ We just

bought a pair for both of our boys since they are pretty hot here

with the kids. They make me nervous -but I know they are good for

coordination/motor planning and social reasons.

From: " kiddietalk " <kiddietalk@...>

Date: Sat Mar 13, 2004 6:28 pm

Subject: Re: Trish-socially engaging but still autistic???/perhaps

not -imagination

Hi Traci, and Trish and all!

About imagination...now this is long!

I wouldn't jump to conclusions that a young child with a

communication impairment has problems with imagination. Like

anything when you are fighting to keep your head above water so you

won't drown, it's hard to enjoy the beauty of the ocean. (yes I was

a lifeguard) In other words -when a child is struggling to

communicate basic needs, imagination may take a back seat. It may

be there, but needs to be encouraged out. Tanner today at 7 years

old is not at 'all' shy. If anything it amazes his teachers how

outgoing he is and not the least bit self conscious of the way he

speaks, even though he still has obvious speaking problems at

times. But...it wasn't always like that. Preschool age and pre -

knowledge age of what Tanner was dealing with -he actually would

withdraw around others and go into a shell. Tanner did well with

one on one playdates -not at all group. Tanner was never considered

autistic or PDD by any of the neurodevelopmental MDs or SLPs or OTs

or teachers that worked with him professionally. Nor was he ever

considered autistic by any lay people. There is a difference in

autism and apraxia -and differences in how to work with both

appropriately. Proper diagnosis of one or both is most important.

I find this to be a very important topic and very misunderstood even

by some professionals. So below is a three year archived history of

some tips we used to assist Tanner in developing a strong

imagination.

Here are some ways to do this that I posted when Tanner was 4

From: "

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Autistic kids can be verbal or non verbal. The non verbal ones that I

have seen have diagnosed or undiagnosed apraxia of speech. This is

important to know because it changes the dymnamics their therapy. A

child with autism that is not verbal my have a difficult time with ABA

that is commanding language. (Although, the IBI programs I have seen

here in Ontario, don't focus on that immediately, and usually tries to

get the child to use signs, gestures or pictures for early

communication.) These sorts of IBI programs are successful here in

Ontario Canada for both children with apraxia and autism or a child with

both. I am not sure what ABA looks like where your are, but around here,

I am seeing children with autism and or apraxia, successful in this

program that looks nothing like ABA programs did not that many years ago.

Your speech therapist is not right for your child if he is waiting for

your child to " give him enough " to work with. You need a therapist that

is on the other side, giving YOUR CHILD enough to work with by whatever

means that takes.

N

juladler wrote:

> Thank you so much for your responses. I am going to start looking

> into more of the biomedical approaches and will definitely send away

> for the porphyrin urine test, but I'd like to start with ABA and fish

> oil so that I can keep track of what is working and what isn't.

>

> After reading all of the messages on this topic, however, I'm still

> confused as to whether I'm getting my 2 year old the correct therapy.

> Can someone please tell me how I would know if his delayed speech is

> due to apraxia vs. ASD? The speech therapists tell me that he doesn't

> give them enough to work with because he doesn't try to talk despite

> encouragement. But, my husband and I have found that when he is

> really excited about something and tries to say a word like mama, it

> consistently comes out wrong. And when we hear him babble ma ma ma

> ma, and try to get him to repeat it, he can't or won't. Does this

> sound like speech delay due to apraxia vs. autism?

>

> Thanks again for your help!

>

>

>

>

>

> ------------------------------------

>

>

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> Nadine- I am glad to hear from an adult on the spectrum on board and

I think you can bring some of your perspectives as an adult to our

support group.

Thank you so much for writing this. It was actually very difficult for

me to write what I did. My own " social impairment " manifests as social

anxiety. One of the reasons that I represented children (I no longer

practice) is that they motivated me to overcome that. Reading the

misunderstanding that people with autism are unintelligent had the same

effect I guess:-)

One thing that I want to say now that is have " outed " myself is make

sure (as I'm sure you already do, everyone) that your children never

get the impression that because they are different you consider them

something broken that needs to be fixed. Wanting to do everything that

you can to help them is expected - but try not to seem too desperate

about it. Does that make sense? Also don't talk about their

challenges or how difficult that can make life in front of them. Kids

understand much more than you think. You know in the Living with

Autism video on the Autism Speaks website when the mom talks about how

she thought about driving off the bridge with her and her daughter in

the car? Well, her daughter was in the room when she said that and I

could just tell that she knew what she was saying. It made me cry. For

her daughter.

The one thing that made me sad in Autism: A Musical was when the mom

said that society would never value her child because she has autism.

Is that true? I hope not. All of this has motivated me to go and have

my own diagnosis reconfirmed. I am thinking about maybe trying to do

something educatiional and motivational to show people that they may be

misunderstanding what autism looks like in some people. Maybe then

more people will value us. Maybe not. Worth a try.

I haven't read all of the responses in this chain. I have not been

feeling well and I saw things were getting tense with some folks

disagreeing. I was afraid it would cause me stress and that would make

my GI issues worse. Anyway - if anyone wants to write to me privately

please do. I only want to help other kids. I would never suggest

something I thought would hurt. I would be willing to share anything

at all about our own experience to anyone who writes me.

Regards,

Nadine

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a quick thought on the ABA method and Apraxia. Since we've been discussing

that sometimes there are autistic kids with Apraxia, you can sometimes see

how it's possible to overlap an ABA method with something like the Kaufman

cards. It's possible to take SEVERAL different methods and combine them to

create

something that will work specific to that particular child and his/her

issues.

I know that Asa does NOT have Autism and isn't on the spectrum, so he's the

" typical " Apraxic child (there really aren't any kids who are typical LOL)

but I know that he responds quite well with a mixture of the Kaufman cards

done in a manner similar to ABA, but then with a bit of PROMPT thrown in there.

So far-- that's reaped great results for him, so I know that it's Do-able to

mix methods, and while I don't believe that ABA would EVER work for him as an

Apraxic child, I know that a MIXTURE of the methods work quite well.

becky

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

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I concur completely with not making children feel (that you feel) they

are broken and need to be fixed, but I disagree with not talking about

their challenges--not in front of them but directly to them. High

functioning kids know that they are struggling, failing, just not

" getting it " in the areas that this is in fact true for. It seems

only kind and helpful to let them know why, and that you accept and

recognize their weak points as well as their unique gifts. My oldest

son is clearly on the spectrum now, but not nearly as far on as he

used to be. He is also very gifted. As another Aspie, I feel

comfortable discussing with him that some things are just going to be

a lot harder for us to master and to be successful with than they are

for other people. At almost 12 he still can't really have a

reciprocal conversation or make decent eye contact or recognize social

cues. His handwriting is illegible and he overreacts to his younger

brother's hassling all day long. On the other hand, he is an absolute

rock star academically at his school for gifted kids and is going to

the state geography bee this week. He eats like a pig and plays the

cello like an angel. In my opinion admitting that he is very behind

others in some areas, just as he is so far ahead of others in

different areas, fosters self acceptance and empathy which, of course,

is a very basic deficit in the autistic mind. I have taught him that

our style of brain is different, and how it is different, and that it

is fine. Some things are harder, some are easier. We must learn

slowly and intellectually social skills that others know intuitively,

but we can grasp physics and algebra and make maps from toddlerhood.

I wish someone had explained this to me as a child. I do not,

however, share with him all of my greatest frustrations with him, or

fears for his future, or discuss the major regression he took into

autism, or my regrets about it. The woman in the video talking about

driving off the bridge makes me very sad, too.

, " nadine_silber "

<nadine_silber@...> wrote:

>

>

> One thing that I want to say now that is have " outed " myself is make

> sure (as I'm sure you already do, everyone) that your children never

> get the impression that because they are different you consider them

> something broken that needs to be fixed. Wanting to do everything that

> you can to help them is expected - but try not to seem too desperate

> about it. Does that make sense? Also don't talk about their

> challenges or how difficult that can make life in front of them. Kids

> understand much more than you think. You know in the Living with

> Autism video on the Autism Speaks website when the mom talks about how

> she thought about driving off the bridge with her and her daughter in

> the car? Well, her daughter was in the room when she said that and I

> could just tell that she knew what she was saying. It made me cry. For

> her daughter.

>

>

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Re: self acceptance and empathy which, of course,

is a very basic deficit in the autistic mind.

Maybe it is just me but I see a deficit of this everywhere.

You sound like you are doing great things for your child. Bravo! How

lucky he is to have you for his mom.

Because my children are young I have been criticized for trying to

change them. As outspoken as I am here I am not so in person. My

family in particular vacillates between thinking I am overreacting

and not accepting the kids for who they are and on the other hand

thinking they are worse off than they are and wondering if I am doing

enough. In the end I want now what I have wanted from the start...a

removal of whatever causes physical suffering to them. I saw them

growing into gut stuff that I struggled with for years and never got

help for despite many tests, etc. Turns out in my young children

those issues caused other stuff, auditory and neuro things that

lessened and in some cases were removed by healing physical stuff.

I have not yet come across a parent on this board or in real life who

in dealing with this does not accept their child. I know they exist

but I have not met them and truly believe they are a minority.

> >

> >

> > One thing that I want to say now that is have " outed " myself is

make

> > sure (as I'm sure you already do, everyone) that your children

never

> > get the impression that because they are different you consider

them

> > something broken that needs to be fixed. Wanting to do

everything that

> > you can to help them is expected - but try not to seem too

desperate

> > about it. Does that make sense? Also don't talk about their

> > challenges or how difficult that can make life in front of them.

Kids

> > understand much more than you think. You know in the Living with

> > Autism video on the Autism Speaks website when the mom talks

about how

> > she thought about driving off the bridge with her and her

daughter in

> > the car? Well, her daughter was in the room when she said that

and I

> > could just tell that she knew what she was saying. It made me

cry. For

> > her daughter.

> >

> >

>

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> I disagree with not talking about their challenges

I don't think that I expressed myself well. I did not mean do not

discuss things with your child. I meant don't talk about them with

others as if you child was not there. What I personally can't stand,

and others I have spoken with agree, is when parents go on and on about

how they " lost " their kids while their kids are sitting right there.

Your child has challenges. He/she is not dead. That's all.

Discussing things with your kids is important though. In fact I wish

more people would take the time to talk to their children with autism

than about them.

Nadine

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> Re: self acceptance and empathy which, of course,

is a very basic deficit in the autistic mind.

I am not an expert on autism just because I have been diagnoed with

Asperger's. Every person is different. And I know that there are many

times that I am pretty clueless/oblivious to the fact that others are

feeling and/or experiencing something. But I really don't think that I

lack empathy. If I did I wouldn't have spent all of the time and

effort - which took a huge toll on me by the way - to overcome my

anxiety and represent children who needed my help. I knew that they

felt helpless because that is how I had felt when I was their age. I

did not want them to feel that way. Isn't that that empathy? Maybe

I'm wrong. Maybe it's something different. If it is the same - does

that mean I don't have autsim? I have been re-evaluated and diagnosed

at various ages. I don't think it's that simple. Maybe we make too

many general conclusions about what are " basic deficits in the autistic

mind. "

It's true I have a problem with self-acceptance. But only because

others have not accepted me. Thank goodness my Mom did. That really

helped. As a mom myself I know that it is hard and often stressful. II

did not mean to diminish that.

Nadine

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BTW: My issues with self-acceptance are my own. Other Aspies have

told me that I need to get over it and be proud of who I am. I'm

getting better at that. I'm pasting an interesting article below

about another woman with Asperger's. If you read the last paragraph

you'll see that she did not know that lack of self-acceptance was

supposed to be one of her defecits too:-) I see similarities with

her but I am also different. We are all different. You have seen

one person with autism you have seen one person with autism.

Asperger's: My life as an Earthbound alien

http://www.cnn.com/2008/HEALTH/conditions/03/28/autism.essay/index.html

Story Highlights

Woman says Asperger's syndrome diagnosis at 48 helped

explain " otherness "

People with Asperger's are often ultra-focused on sometimes obscure

topics

With intensified senses she's ultra-attuned to lights, noise,

textures, and smells

Asperger's syndrome is one of the autism spectrum disorders

One CNN manager, who asked to remain anonymous, recently learned --

at 48 -- that she has Asperger's syndrome, a form of autism. Today

she shares an inside view of life with the condition.

ATLANTA, Georgia (CNN) -- Recently, at 48 years of age, I was

diagnosed with Asperger's syndrome. For most of my life, I knew that

I was " other, " not quite like everyone else. I searched for years for

answers and found none, until an assignment at work required me to

research autism. During that research, I found in the lives of other

people with Asperger's threads of similarity that led to the

diagnosis. Although having the diagnosis has been cathartic, it does

not change the " otherness. " It only confirms it.

When I talk to people about this aspect of myself, they always want

to know what it means to be an " Aspie, " as opposed to

a " Neurotypical " (NT). Oh, dear, where to start . ...

The one thing people seem to know about Asperger's, if they know

anything at all, is the geek factor. Bill Gates is rumored to be an

Aspie. We tend to have specialized interests, and we will talk about

them, ad infinitum, whether you are interested or not. Recognizing my

tendency to soliloquize, I often choose silence, although perhaps not

often enough. Due to our extensive vocabularies and uninflected

manner of speaking, we are called " little professors, " or arrogant.

I don't quite understand small talk, and early in my adult life,

solecisms were frequent. At meetings, I launch into business without

the expected social acknowledgments. It's not that I don't care about

people, I am just very focused on task. Do you have to rehearse

greeting people to reinforce that you should do it? I do.

I am lucky to have a very dear friend who savors my eccentricities.

She laughs, lovingly, about one particular evening at a restaurant.

Before she could get seated, I asked her what she knew about the

golden ratio and began to spew everything I know about it. I re-

emphasize how lucky I am to have her as a friend, because this

incident occurred long before I was diagnosed.

A misconception is that Aspies do not have a sense of humor. It is

true that we can be very literal, so we often miss the humor in

everyday banter, but we can and do enjoy even subtle humor. Our

literal interpretations, however, can be problematic.

In first grade, whenever someone made a mess in the classroom, the

teacher would ask a student to get the janitor. The student would

come back with Mr. (not really his name), who carried a broom

and large folding dustpan. When I was asked to get the janitor, I

looked all over the school and reported back to the teacher that I

could not find it. After all, the person was Mr. , so the

janitor must be the object, right?

I lack the ability to see emotion in most facial expressions. I

compensate for this deficiency by listening to the inflections in

people's voices and using logic to determine emotional context. The

words people choose, their movements, or even how quickly they exit a

meeting can provide clues to emotion.

I also have intensified senses -- touch, taste, smell, sight, and

sound -- so I am attuned to lights, noise, textures, and smells. In

a " busy " environment, I will eventually go into sensory overload and

my mind will go blank. When this happens, I have to " go away "

mentally for a brief period to regain focus. When I " return, " I have

to piece together what occurred while I was " away. " The additional

mental processing I must do to function every day is fatiguing, and I

don't handle " ad hoc " very well. Being asked to respond quickly in

the midst of all this other processing is difficult, sometimes

impossible.

I am so sensitive to touch that a tickle hurts me. This is the

hardest concept for most people to understand. How can a tickle hurt?

All I can tell you is that it does, so I avoid being touched except

by those who have learned how to touch me.

Hugs are dispensed infrequently, but if I do hug someone, I resemble

enstein's monster, arms extended to control contact. When my dad

(who I suspect is an Aspie, too) and I hug, we both have " the

approach. " We sometimes miss and have to re-approach a couple of

times until a brief, awkward hug is achieved.

In school, other children noted my differences, and I was bullied

(and tickled into fits of despair) for years. Already needing

extended periods of time alone, my response was to become even more

of a loner. Uh oh. When you are weird, you are a joke. When you are a

loner, you frighten people. It's always the quiet ones. ...

I am married (wow!), and my brilliant husband is an absolute

sweetheart. I don't know any other man who has the self-confidence to

be pushed away (sometimes sharply), both physically and mentally, as

often as he has been. He has been gentle and patient (and, yes,

frequently emotionally depleted) as we both worked through my need

for space, tendency to go so deep into my own world that the real

world and everyone in it cease to exist, and sensitivity to touch

during the 26 (soon to be 27) years of our marriage.

I live with anxiety, because the world can be overwhelming and people

have expectations that I always, sooner or later, fail to meet. I

cannot begin to tell you how many times I have been told that I am

rude, inaccessible or cold, yet I have never purposely tried to harm

anyone, nor do I mean to be, well, mean.

I could tell you so much more, but instead let me share one last

insight. Don't pity me or try to cure or change me. If you could live

in my head for just one day, you might weep at how much beauty I

perceive in the world with my exquisite senses. I would not trade one

small bit of that beauty, as overwhelming and powerful as it can be,

for " normalcy. " E-mail to a friend

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Maybe it is me but the social clueless thing I hav seen in

nonautistics and I do not think I am surrounded by the undiagnosed. I

wonder if it is not similar to the lack of pain sensation thing some

of our kids have. I don't think it is hopeless and I believe it has a

physical cause. What that is is the big question and likely answered

differently depending on the person.

As for empathy, Nadine, if you are not empathetic then I really do

not understand that definition. Your representation of kids, your

assistance to this board, and your persistant investigation of the

specific things that affect your son, show great empathy and kindness

in my opinion. Your mom sounds like she did well by you, as you are

doing for your own children. In my book you are an empathetic rock

star.

I offer this as my opinion, not a PC attempt at anything, just

calling it as I see it.

> > Re: self acceptance and empathy which, of course,

> is a very basic deficit in the autistic mind.

>

> I am not an expert on autism just because I have been diagnoed with

> Asperger's. Every person is different. And I know that there are

many

> times that I am pretty clueless/oblivious to the fact that others

are

> feeling and/or experiencing something. But I really don't think

that I

> lack empathy. If I did I wouldn't have spent all of the time and

> effort - which took a huge toll on me by the way - to overcome my

> anxiety and represent children who needed my help. I knew that

they

> felt helpless because that is how I had felt when I was their age.

I

> did not want them to feel that way. Isn't that that empathy?

Maybe

> I'm wrong. Maybe it's something different. If it is the same -

does

> that mean I don't have autsim? I have been re-evaluated and

diagnosed

> at various ages. I don't think it's that simple. Maybe we make too

> many general conclusions about what are " basic deficits in the

autistic

> mind. "

>

> It's true I have a problem with self-acceptance. But only because

> others have not accepted me. Thank goodness my Mom did. That

really

> helped. As a mom myself I know that it is hard and often

stressful. II

> did not mean to diminish that.

>

> Nadine

>

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