RE: Aspergers versus HFA

August 11, 2008

confusing, right !. IMO, I feel its important for that to be clear - across the board - so our kids can get the right services. example, if a child has a DX of aspergers, and it's believed that aspergers had speech when younger, then in school they don't have to focus with all areas of speech, including writing skills & reading that goes along with speech. (because speech isn't that main problem) they can focus more on the social skills. also, if a child is DXed with autism or HFA, it would be clear to work on the pragmatics, speech writing and reading, and still be aware this child needs social skills. If it keeps changing depending on what doctor or conference you go to, the fight in the schools for services will never end to get our children the right help they need. I brought this up to my therapist about the differences between the Classic Autism, Autism, HFA, Aspergers, & PDD-NOS and he told me

instead of focusing on the DX, focus on the right services he needs and work on that. He did mention the correct DX was important for medical purposes, but for me, the services are important. right now, our school for what ever reason whats to continue the SAME services with my son. but they are very strong with changing his classification to OHI with a medical alert of Autism. I don't know why they felt that strong to do this change of classification. but his services are still the same as from when he was in Kindergarten. just for middle school they want to change it. they said, unless he has Classic autism, it has to be changed. <cindyelgamal@...> wrote: At one time it was thought by many experts that they were different – HFA had language delay while Aspergers did not. Today most experts believe there is no difference. In fact, I just read an article on Tony Attwood’s site in which he says there is no difference; within the last year or so I read an article on his site that said they were different (for the reason I stated above). From: [mailto: ] On Behalf Of ginaSent: Sunday, August 10, 2008 6:46 PM Subject: ( ) Re: PDD-NOS being

re-named? ,I have the same question as you: what is the difference between AS and HFA. My son has been refferred to as both so I just assummed they were the same thing??????? > > >> > Thanks for that info. I find it very interesting in that my Aspie son> > fits into this criteria, especially the sensory stuff, but he has no> > speech delay, although he has trouble with communicating his thoughts> > sometimes and is very bright.> >> > I suspect, that this "new" diagnostic criteria is to create a label> > for spectrum kids that clearly have issues, but are not

"classic> > autism". Notice the line "A diagnosis can tell you what your child> > does not have." I notice that the article makes it very clear> > that "MSDD" will not be considered "autism" or even a "spectrum> > disorder". So the trend to list ADD/ADHD, Sensory Processing,> > apraxia, non verbal learning disorder, etc. etc. as part of spectrum> > disorders will cease to increase the autism numbers. Never mind that> > all those issues are rampant in our kids, and certainly were NOT> > 20,30 years ago or more.> >> > I also think that will be very convenient for the government, NIH,> > CDC, FDA, and medical establishment such as AAP, AMA to refute the> > increase in spectrum disorders in the past 20 years and the autism> > epidemic.> >> > I don't care what NIH calls it - I want them to address the many> >

causes and how to help our kids get better, and make sure this> > epidemic stops.> >> >> > > I was reading on the medline/NIH website today at work and did a> > > search on PDD-NOS. The results gave a site called dbpeds.org, which> > > is developmental and behavioral pediatrics online. Apparently PDD-> > NOS> > > is going to be re-named to "multisystem developmental disorder".> > > There was a great handout in PDF form that described my son> > perfectly.> > >> > > Anyone else ever heard of this? Here is the pamphlet's text.> > >> > > Multisystem Developmental Disorder> > > by Henry L Shapiro MD> > > Multisystem Developmental Disorder (MSDD) is one of the newer terms> > to> > > describe a group> > > of children with communication,

social, and sensory processing> > > problems who do not fit into> > > other categories such as autism. MSDD is usually diagnosed in early> > > childhood.> > > Abnormal reaction to sounds, smells, textures, movement,> > temperature,> > > and other> > > body sensations> > > Disturbed behavior that seems more related to unpleasant experiences> > > than lack of> > > interest in participating> > > Some impairment in communication development> > > Relatively normal interest in communicating and interacting socially> > > when they are> > > not reacting to their environment> > > Varying amounts of attention and organization problems> > > Varying amounts of coordination problems or clumsiness> > > Varying amounts of problems regulating sleep, activity, and

appetite> > > These problems must interfere significantly with everyday life, and> > > interfere with normal> > > development to warrant a diagnosis.> > > MSDD is thought to differ from autism in several ways. First,> > children> > > with MSDD tend to> > > respond to treatment better than children with autism. They are less> > > likely to have severe> > > delays in mental ability, and less likely to have severe rituals or> > > repetitive behaviors. Still,> > > these diagnoses are hard to tell apart in young children since> > > children with both diagnoses,> > > Autism and MSDD, may have similar behavior problems.> > > Emotional outbursts or "meltdowns"> > > Refusal to eat certain foods> > > Insistence on wearing certain clothing, or not liking clothing

at> > all> > > Extreme reactions to noise or movement> > > Avoidance of sensory experiences or seeking out extreme sensory> > experience> > > Abnormal reaction to pain> > > Sleep disturbance> > > Avoidance or lack of pleasure in being touched or cuddled in spite> > of> > > interest in> > > being with you socially> > > Refusal to have hair washed, touched, combed, cut, etc.> > > Toe walking. Refusal to walk on certain surfaces (such as walking on> > > grass in bare> > > feet)> > > Like many childhood developmental problems, we have few specific> > > treatments or cures.> > > Most of our treatment is meant to help a child work around a> > problem,> > > or to guide them into> > > learning or discovering skills that they

are not mastering on their> > own.> > > What kind of problems do children with MSDD have?> > > Is it MSDD or Autism?> > > What behaviors are seen in MSDD?> > > How do we treat MSDD?> > > Multisystem Developmental Disorder Page 1> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > > Sensory Integration therapy is often a mainstay of treatment. It> > tries> > > to help a child> > > overcome their extreme sensitivity and reaction to their sensory> > > experiences. Sensory> > > Integration therapy is targeted at problems related to sensation.> > > These include problems> > > with touch, body position, movement, sound, food textures, and so> > > forth. Techniques may> > > involve deep pressure, brushing, and swinging. We do not know

how> > > these treatments work> > > but often they can be helpful.> > > Speech and Language therapy is also an important part of the> > equation.> > > Sometimes,> > > therapy has to be aimed at social and pragmatic problems. A home> > > program is crucial, since> > > children need to practice skills throughout the day. A therapist> > > should be sharing goals and> > > techniques with parents and teachers. There are many handouts on> > this> > > website that can> > > help.> > > Behavior specialists can also be helpful in helping parents choose> > > goals and learn> > > techniques to teach appropriate behaviors and eliminate problem> > > behaviors. In general,> > > psychotherapy for the child is not effective for MSDD.> > >

Medications can help in certain cases, but medication is not> > curative> > > Potential side effects> > > and treatment benefit have to be weighed carefully.> > > It is important to be an advocate for your child. Make sure that you> > > and the doctor are very> > > clear about the goals of treatment, including when you are going to> > > stop or change> > > treatment.> > > Children often have to be given diagnoses to get services. Sometimes> > > the diagnosis also> > > helps guide treatment. It may predict how the child may do in the> > > future. A diagnosis can> > > also tell you what your child does not have.> > > The MSDD diagnosis is getting better known, and is now being taught> > in> > > early childhood> > > special education courses.

Some clinicians will still diagnose> > autism,> > > pervasive> > > developmental disorder, developmental delay, and language> > impairment.> > > Sensory> > > integration disorder is also diagnosed.> > > The most important thing is to understand your child's needs and> > > strengths, to set goals,> > > monitor progress, and make changes when things are not working.> > > First published: 5/27/2004> > > References> > > Zero to Three Diagnostic Classification Task Force. (1994).> > Diagnostic> > > Classification> > > of Mental Health and Developmental Disorders of Infancy and Early> > > Childhood> > > (DC:0-3)™. Zero to Three. ISBN: 0943-657-32-6> > > Advocacy> > > Multisystem Developmental Disorder Page 2> > > Reprinted

August 11, 2008

I would ask for written clarification of why it "has" to be changed.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

confusing, right !. IMO, I feel its important for that to be clear - across the board - so our kids can get the right services. example, if a child has a DX of aspergers, and it's believed that aspergers had speech when younger, then in school they don't have to focus with all areas of speech, including writing skills & reading that goes along with speech. (because speech isn't that main problem) they can focus more on the social skills. also, if a child is DXed with autism or HFA, it would be clear to work on the pragmatics, speech writing and reading, and still be aware this child needs social skills.

If it keeps changing depending on what doctor or conference you go to, the fight in the schools for services will never end to get our children the right help they need. I brought this up to my therapist about the differences between the Classic Autism, Autism, HFA, Aspergers, & PDD-NOS and he told me instead of focusing on the DX, focus on the right services he needs and work on that. He did mention the correct DX was important for medical purposes, but for me, the services are important. right now, our school for what ever reason whats to continue the SAME services with my son. but they are very strong with changing his classification to OHI with a medical alert of Autism. I don't know why they felt that strong to do this change of classification. but his services are still the same as from when he was in Kindergarten. just for middle school they want to change it. they said, unless he has Classic autism, it has to be changed.

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August 11, 2008

>

> I would ask for written clarification of why it " has " to be changed.

Me too. Sounds fishy. In our state, autism has additional

requirements the school must meet that other disabilities don't, so

they could be setting themselves up to have to do less (or maybe not).

Also, HFA is not an official dx. The 5 official PDDs are: autism,

asperger, PDD-NOS, rett's syndrome, and childhood disintegrative (sp?)

disorder. PDD-NOS is someone with autistic symptoms severe enough to

warrant a dx, but the pattern or severity doesn't fit the specs for

any of the other PDDs. The only difference between autism and

asperger are that asperger is later onset, involves no loss of early

language skills, and language difficulties are usually not as severe

as autism. My asperger son fits the criteria for autism except he

didn't have that early language delay.

Ruth

August 11, 2008

Yes, HFA is not a dx. But the school is doing an "educational" dx of sorts, not a medical dx. And all of the PDD's are under the autism umbrella, medically. Get everything in writing plus, if they push it and win, write on the paper in big letters, "I disagree with changing ....blah blah blah" and sign your name.

Of course, they should meet his educational needs no matter what the dx, educationally or medically. I don't understand why they get so out of whack over the name except, as you pointed out, if they have a child with an autism dx, they have to provide a level of services to warrant that.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

>> I would ask for written clarification of why it "has" to be changed. Me too. Sounds fishy. In our state, autism has additionalrequirements the school must meet that other disabilities don't, sothey could be setting themselves up to have to do less (or maybe not).Also, HFA is not an official dx. The 5 official PDDs are: autism,asperger, PDD-NOS, rett's syndrome, and childhood disintegrative (sp?)disorder. PDD-NOS is someone with autistic symptoms severe enough towarrant a dx, but the pattern or severity doesn't fit the specs forany of the other PDDs. The only difference between autism andasperger are that asperger is later onset, involves no loss of earlylanguage skills, and language difficulties are usually not as severeas autism. My asperger son fits the criteria for autism except hedidn't have that early language delay.RuthNo virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.0/1604 - Release Date: 8/11/2008 5:50 AM

August 11, 2008

My son was dx Aspergers Syndrome and on his paperwork they put Autism....and looked at me as if I would be in shock or whatever...and I told them I have no problem...just as long as he gets the services he needs.

Schools are all so different. I feel so blessed to be here in PA and in the district I am.

Jan

Janice Rushen

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From: Roxanna <madideas@...>Subject: Re: ( ) Aspergers versus HFA Date: Monday, August 11, 2008, 6:21 PM

Yes, HFA is not a dx. But the school is doing an "educational" dx of sorts, not a medical dx. And all of the PDD's are under the autism umbrella, medically. Get everything in writing plus, if they push it and win, write on the paper in big letters, "I disagree with changing ....blah blah blah" and sign your name.

Of course, they should meet his educational needs no matter what the dx, educationally or medically. I don't understand why they get so out of whack over the name except, as you pointed out, if they have a child with an autism dx, they have to provide a level of services to warrant that.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

>> I would ask for written clarification of why it "has" to be changed. Me too. Sounds fishy. In our state, autism has additionalrequirements the school must meet that other disabilities don't, sothey could be setting themselves up to have to do less (or maybe not).Also, HFA is not an official dx. The 5 official PDDs are: autism,asperger, PDD-NOS, rett's syndrome, and childhood disintegrative (sp?)disorder. PDD-NOS is someone with autistic symptoms severe enough towarrant a dx, but the pattern or severity doesn't fit the specs forany of the other PDDs. The only difference between autism andasperger are that asperger is later onset, involves no loss of earlylanguage skills, and language difficulties are usually not as severeas

autism. My asperger son fits the criteria for autism except hedidn't have that early language delay.RuthNo virus found in this incoming message.

Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.0/1604 - Release Date: 8/11/2008 5:50 AM

August 11, 2008

My son was dx Aspergers Syndrome and on his paperwork they put Autism....and looked at me as if I would be in shock or whatever...and I told them I have no problem...just as long as he gets the services he needs.

Schools are all so different. I feel so blessed to be here in PA and in the district I am.

Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: Roxanna <madideas@...>Subject: Re: ( ) Aspergers versus HFA Date: Monday, August 11, 2008, 6:21 PM

Yes, HFA is not a dx. But the school is doing an "educational" dx of sorts, not a medical dx. And all of the PDD's are under the autism umbrella, medically. Get everything in writing plus, if they push it and win, write on the paper in big letters, "I disagree with changing ....blah blah blah" and sign your name.

Of course, they should meet his educational needs no matter what the dx, educationally or medically. I don't understand why they get so out of whack over the name except, as you pointed out, if they have a child with an autism dx, they have to provide a level of services to warrant that.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

>> I would ask for written clarification of why it "has" to be changed. Me too. Sounds fishy. In our state, autism has additionalrequirements the school must meet that other disabilities don't, sothey could be setting themselves up to have to do less (or maybe not).Also, HFA is not an official dx. The 5 official PDDs are: autism,asperger, PDD-NOS, rett's syndrome, and childhood disintegrative (sp?)disorder. PDD-NOS is someone with autistic symptoms severe enough towarrant a dx, but the pattern or severity doesn't fit the specs forany of the other PDDs. The only difference between autism andasperger are that asperger is later onset, involves no loss of earlylanguage skills, and language difficulties are usually not as severeas

autism. My asperger son fits the criteria for autism except hedidn't have that early language delay.RuthNo virus found in this incoming message.

Checked by AVG - http://www.avg. com Version: 8.0.138 / Virus Database: 270.6.0/1604 - Release Date: 8/11/2008 5:50 AM

August 11, 2008

>

> My son was dx Aspergers Syndrome and on his paperwork they put

Autism....and lookedï¿½ at me as if I would be in shock or whatever...

I think they did this because, in the school definition, all PDDs are

" coded " autism. At least that is how our state is (Texas). They are

very explicit that " autism " includes the entire spectrum. My son was

coded autism also for his 504 Plan. They also looked at me and paused

and asked if it was okay. I'm not sure what they would have done if

I'd said I minded. I guess I'll never know.

I think some states are different though.

Ruth

August 11, 2008

Yeah I sort of figured that they did that for that reason and also so that he could get the services he needed. The psychologist didn't want me to be upset...and I told her I don't care what you label him as as long as he gets the services he needs.Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

From: r_woman2 <me2ruth@...>Subject: Re: ( ) Aspergers versus HFA Date: Monday, August 11, 2008, 9:45 PM

>> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and lookedï¿½ at me as if I would be in shock or whatever...I think they did this because, in the school definition, all PDDs are"coded" autism. At least that is how our state is (Texas). They arevery explicit that "autism" includes the entire spectrum. My son wascoded autism also for his 504 Plan. They also looked at me and pausedand asked if it was okay. I'm not sure what they would have done ifI'd said I minded. I guess I'll never know. I think some states are different though.Ruth

August 11, 2008

On Apr 9, 6:38am, " " wrote:

} At one time it was thought by many experts that they were different - HFA

} had language delay while Aspergers did not. Today most experts believe

} there is no difference. In fact, I just read an article on Tony Attwood's

} site in which he says there is no difference; within the last year or so I

} read an article on his site that said they were different (for the reason I

} stated above).

That seems to leave no useful term for those kids who are quite

functional yet did have language delay. I'm thinking of my son

here, and also a friend's daughter who just got a tenative AS diagnosis,

but I remember very clearly her language issues as a toddler.

(Which at the time we all thought adorable.)

Of course, the whole concept of " functional " is very subjective,

but the experience of having a kid with classic autism and a kid

with HFA can be so different, I feel uncomfortable just calling

it " autism. "

Willa

August 12, 2008

I agree with you, Willa. I think the term "HFA" came to be because of the subset of kids who started out with autism but then hit a good curve and started improving their skills enough to be considered "high functioning." You can't really ignore the beginning because it really impacted how they develop now. And it's not the same as a kid with AS who did not have language delays and who may not even been noticed as having a problem for many years.

On Attwood's website, he has an article where he talks about the kids with HFA - how they start out with autism but then they hit on a trajectory that mirror's the kids with AS. Nobody knows why they suddenly gain skills while other kids don't. But that is definitely the group that my two ds's are in.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

On Apr 9, 6:38am, "" wrote:} At one time it was thought by many experts that they were different - HFA} had language delay while Aspergers did not. Today most experts believe} there is no difference. In fact, I just read an article on Tony Attwood's} site in which he says there is no difference; within the last year or so I} read an article on his site that said they were different (for the reason I} stated above). That seems to leave no useful term for those kids who are quitefunctional yet did have language delay. I'm thinking of my sonhere, and also a friend's daughter who just got a tenative AS diagnosis,but I remember very clearly her language issues as a toddler.(Which at the time we all thought adorable.) Of course, the whole concept of "functional" is very subjective,but the experience of having a kid with classic autism and a kidwith HFA can be so different, I feel uncomfortable just callingit "autism."Willa

August 12, 2008

Rose – My 18 yo son is Aspergers

(diagnosed at 15; had ADHD dx at 5). Even though he did not have a language

delay (speech) he has st

From:

[mailto: ] On Behalf Of Rose

Sent: Monday, August 11, 2008 6:54

AM

To:

Subject: Re: ( )

Aspergers versus HFA

confusing, right !. IMO, I feel its important for that to be

clear - across the board - so our kids can get the right services.

example, if a child has a DX of aspergers, and it's believed that aspergers had

speech when younger, then in school they don't have to focus with all areas of

speech, including writing skills & reading that goes along with speech.

(because speech isn't that main problem) they can focus more on the

social skills. also, if a child is DXed with autism or HFA, it would be

clear to work on the pragmatics, speech writing and reading, and still be aware

this child needs social skills.

If it keeps changing depending on what doctor or conference you go to,

the fight in the schools for services will never end to get our children the

right help they need. I brought this up to my therapist about the

differences between the Classic Autism, Autism, HFA, Aspergers, & PDD-NOS

and he told me instead of focusing on the DX, focus on the right services he

needs and work on that. He did mention the correct DX was important for

medical purposes, but for me, the services are important. right now, our

school for what ever reason whats to continue the SAME services with my

son. but they are very strong with changing his classification to OHI

with a medical alert of Autism. I don't know why they felt that strong to

do this change of classification. but his services are still the same as

from when he was in Kindergarten. just for middle school they want to

change it. they said, unless he has Classic autism, it has to be

changed.

wrote:

At one time it was thought by many experts

that they were different – HFA had language delay while Aspergers did

not. Today most experts believe there is no difference. In fact, I

just read an article on Tony Attwood’s site in which he says there is no

difference; within the last year or so I read an article on his site that said

they were different (for the reason I stated above).

From:

[mailto: ] On Behalf Of gina

Sent: Sunday, August 10, 2008 6:46

PM

Subject: ( ) Re:

PDD-NOS being re-named?

,

I have the same question as you: what is the difference between AS

and HFA. My son has been refferred to as both so I just assummed

they were the same thing???????

> > >

> > Thanks for that info. I find it very interesting in that my Aspie

son

> > fits into this criteria, especially the sensory stuff, but he has

no

> > speech delay, although he has trouble with communicating his

thoughts

> > sometimes and is very bright.

> >

> > I suspect, that this " new " diagnostic criteria is to create

a

label

> > for spectrum kids that clearly have issues, but are not " classic

> > autism " . Notice the line " A diagnosis can tell you what

your child

> > does not have. " I notice that the article makes it very clear

> > that " MSDD " will not be considered " autism " or

even a " spectrum

> > disorder " . So the trend to list ADD/ADHD, Sensory Processing,

> > apraxia, non verbal learning disorder, etc. etc. as part of

spectrum

> > disorders will cease to increase the autism numbers. Never mind

that

> > all those issues are rampant in our kids, and certainly were NOT

> > 20,30 years ago or more.

> >

> > I also think that will be very convenient for the government, NIH,

> > CDC, FDA, and medical establishment such as AAP, AMA to refute the

> > increase in spectrum disorders in the past 20 years and the autism

> > epidemic.

> >

> > I don't care what NIH calls it - I want them to address the many

> > causes and how to help our kids get better, and make sure this

> > epidemic stops.

> >

> > > I was reading on the medline/NIH website today at work and did

a

> > > search on PDD-NOS. The results gave a site called dbpeds.org,

which

> > > is developmental and behavioral pediatrics online. Apparently

PDD-

> > NOS

> > > is going to be re-named to " multisystem developmental

disorder " .

> > > There was a great handout in PDF form that described my son

> > perfectly.

> > >

> > > Anyone else ever heard of this? Here is the pamphlet's text.

> > >

> > > Multisystem Developmental Disorder

> > > by Henry L Shapiro MD

> > > Multisystem Developmental Disorder (MSDD) is one of the newer

terms

> > to

> > > describe a group

> > > of children with communication, social, and sensory processing

> > > problems who do not fit into

> > > other categories such as autism. MSDD is usually diagnosed in

early

> > > childhood.

> > > Abnormal reaction to sounds, smells, textures, movement,

> > temperature,

> > > and other

> > > body sensations

> > > Disturbed behavior that seems more related to unpleasant

experiences

> > > than lack of

> > > interest in participating

> > > Some impairment in communication development

> > > Relatively normal interest in communicating and interacting

socially

> > > when they are

> > > not reacting to their environment

> > > Varying amounts of attention and organization problems

> > > Varying amounts of coordination problems or clumsiness

> > > Varying amounts of problems regulating sleep, activity, and

appetite

> > > These problems must interfere significantly with everyday life,

and

> > > interfere with normal

> > > development to warrant a diagnosis.

> > > MSDD is thought to differ from autism in several ways. First,

> > children

> > > with MSDD tend to

> > > respond to treatment better than children with autism. They are

less

> > > likely to have severe

> > > delays in mental ability, and less likely to have severe

rituals or

> > > repetitive behaviors. Still,

> > > these diagnoses are hard to tell apart in young children since

> > > children with both diagnoses,

> > > Autism and MSDD, may have similar behavior problems.

> > > Emotional outbursts or " meltdowns "

> > > Refusal to eat certain foods

> > > Insistence on wearing certain clothing, or not liking clothing

at

> > all

> > > Extreme reactions to noise or movement

> > > Avoidance of sensory experiences or seeking out extreme sensory

> > experience

> > > Abnormal reaction to pain

> > > Sleep disturbance

> > > Avoidance or lack of pleasure in being touched or cuddled in

spite

> > of

> > > interest in

> > > being with you socially

> > > Refusal to have hair washed, touched, combed, cut, etc.

> > > Toe walking. Refusal to walk on certain surfaces (such as

walking on

> > > grass in bare

> > > feet)

> > > Like many childhood developmental problems, we have few specific

> > > treatments or cures.

> > > Most of our treatment is meant to help a child work around a

> > problem,

> > > or to guide them into

> > > learning or discovering skills that they are not mastering on

their

> > own.

> > > What kind of problems do children with MSDD have?

> > > Is it MSDD or Autism?

> > > What behaviors are seen in MSDD?

> > > How do we treat MSDD?

> > > Multisystem Developmental Disorder Page 1

> > > Sensory Integration therapy is often a mainstay of treatment. It

> > tries

> > > to help a child

> > > overcome their extreme sensitivity and reaction to their sensory

> > > experiences. Sensory

> > > Integration therapy is targeted at problems related to

sensation.

> > > These include problems

> > > with touch, body position, movement, sound, food textures, and

so

> > > forth. Techniques may

> > > involve deep pressure, brushing, and swinging. We do not know

how

> > > these treatments work

> > > but often they can be helpful.

> > > Speech and Language therapy is also an important part of the

> > equation.

> > > Sometimes,

> > > therapy has to be aimed at social and pragmatic problems. A home

> > > program is crucial, since

> > > children need to practice skills throughout the day. A therapist

> > > should be sharing goals and

> > > techniques with parents and teachers. There are many handouts on

> > this

> > > website that can

> > > help.

> > > Behavior specialists can also be helpful in helping parents

choose

> > > goals and learn

> > > techniques to teach appropriate behaviors and eliminate problem

> > > behaviors. In general,

> > > psychotherapy for the child is not effective for MSDD.

> > > Medications can help in certain cases, but medication is not

> > curative

> > > Potential side effects

> > > and treatment benefit have to be weighed carefully.

> > > It is important to be an advocate for your child. Make sure

that you

> > > and the doctor are very

> > > clear about the goals of treatment, including when you are

going to

> > > stop or change

> > > treatment.

> > > Children often have to be given diagnoses to get services.

Sometimes

> > > the diagnosis also

> > > helps guide treatment. It may predict how the child may do in

the

> > > future. A diagnosis can

> > > also tell you what your child does not have.

> > > The MSDD diagnosis is getting better known, and is now being

taught

> > in

> > > early childhood

> > > special education courses. Some clinicians will still diagnose

> > autism,

> > > pervasive

> > > developmental disorder, developmental delay, and language

> > impairment.

> > > Sensory

> > > integration disorder is also diagnosed.

> > > The most important thing is to understand your child's needs and

> > > strengths, to set goals,

> > > monitor progress, and make changes when things are not working.

> > > First published: 5/27/2004

> > > References

> > > Zero to Three Diagnostic Classification Task Force. (1994).

> > Diagnostic

> > > Classification

> > > of Mental Health and Developmental Disorders of Infancy and

Early

> > > Childhood

> > > (DC:0-3)™. Zero to Three. ISBN: 0943-657-32-6

> > > Advocacy

> > > Multisystem Developmental Disorder Page 2

> > >

> >

>

August 13, 2008

Hi Willa,

I am still confused with the difference between aspherger and high

functioning autisim. My son was dx by 2 different docs one saying he

is HFA and the other saying he is AS. My son did not speak until he

was about 4 after major speech therapy. His therapist told me that he

did have speech but it was aspie speech. Basically they have their

own language.???Anyone heard that before?? I know that he was a

little consistant with some of his jibberish, he would use some of

the same blurbs over and over for certain things, kind of like he was

talking and asking for the same things using the same words. Do ya

know what Im trying to say, cause I cant get it out the way Im trying

to, now I sound like my son, maybe it is rubbing off LOL, anyway he

would get very angry because he would talk this jibberish to me like

I was suppose to understand him and because I didnt he would become

violent, throwing things and throwing himself on the floor until I

could figure out what he wanted. The amazing thing was when he

finally was able to talk his entire demeanor changed. He was a

different kid because he could finally communicate. Its like being a

baby stuck in a bigger boys body I guess. That must be terrible to

know what your saying but you cant be understood. The really amazing

thing was how he could not talk yet he could write words on his

magnadoodle only if they were street names or signs. He was obsessed

with signs and street signs. At 3 years old he could write every

letter of the alphabet but didnt even know what the alphabet was. He

memorized every street sign and names of streets when we would be

driving around and he had magnadoodles in the car also so he would

copy the letters from the street names and he would draw the signs

and put the name in it. for example he would draw a stop sign and

write stop in the middle of it just like a real stop sign was. Every

toy he had was anything to do with signs. He had sign puzzles,

books , plastic street signs that he would line up along my kitchen

counters and table perfectly in a row, hundreds of these little

plastic signs and if one was moved out of place he would fix it

immediately. It would upset him if one would get knocked over or out

of place. This will make you laugh at Halloween he wanted to be a

stop sign so I made him a big stop sign costume and he still has it

to this day and he is 10. The entire time we were trick or treating

he was going up to every sign and touching it and memorizing all the

letters so when he got to his magnadoodle he could write them all

down. He was the least bit interested in trick or treating. He didnt

go up to one door but he did touch every sign and tell me what it

was. HA HA. When he was in preschool he was reading at a 3rd grade

level and no one believed that he could read, they thought he was

memorizing stories that I had read to him, so the teacher put him on

the computer and tested him on stories that he never read before and

some how it rates the grade level that your child is reading at and

he was at a third grade level. Unbelievable isnt it. The sad thing is

he hates to read now, unless it is something to do with science ,

weather or wwe. anyway I guess I got way off track from our original

conversation regarding the difference between the two diagnosis. I

guess to me they are the same thing. I believe they are treated the

same way so what difference does it make. I was told by his

psychiatrist that you cant treat the autisim that you have to treat

the symptoms. If that is true or not Im not sure. Thanks for

listening,

> } At one time it was thought by many experts that they were

different - HFA

> } had language delay while Aspergers did not. Today most experts

believe

> } there is no difference. In fact, I just read an article on Tony

Attwood's

> } site in which he says there is no difference; within the last

year or so I

> } read an article on his site that said they were different (for

the reason I

> } stated above).

>

> That seems to leave no useful term for those kids who are quite

> functional yet did have language delay. I'm thinking of my son

> here, and also a friend's daughter who just got a tenative AS

diagnosis,

> but I remember very clearly her language issues as a toddler.

> (Which at the time we all thought adorable.)

>

> Of course, the whole concept of " functional " is very subjective,

> but the experience of having a kid with classic autism and a kid

> with HFA can be so different, I feel uncomfortable just calling

> it " autism. "

>

> Willa

>

August 13, 2008

Boy Ruth ,

I am really confused now cause my son is suppose to be dx with

aspherger but he did have the symptoms early on and did have speech

delay its not like he was doing ok and then things changed he started

out the way he is. I feel like I knew from the time that he was an

infant that something was just not right. I told my husband that from

the very beginning. I have an older daughter so I wasnt a first time

mom and I know all kids are different but I just knew something was

off but I couldnt put my finger on it until of course he got a little

bigger and wasnt doing the things he should have been doing for his

age. Another thing Ive been wanting to ask other moms. Did any moms

have problems with their pregnancies or deliveries because I have

talked to a few different moms that their kids have AS or whaterver

we are calling it and they had similar problems that I had. I started

out with a great preganancy but I ended up with toxemia and my labor

had to be induced 2 weeks early and my delivery was terrible he just

did not want to come out he had a hard time being born and when he

finally was delivered he was totally blue my sister says almost purle

in color and she thought he was stillborn and I was afraid because I

did not hear him cry and they had the neonatal unit in there reviving

him yet they told me he didnt go without oxyegen for too long cause I

was worried he would have problems. They assured me he was ok, and

not to worry. The doctors also have told me even if he didnt breathe

right away after being born that they do not associate autisim with

lack of oxygen at birth. I was worried he might have cerabal palsy or

something like that, but the docs said dont worry he is fine and now

he is an aspie. Do you think there is any relationship to his rough

birth and the toxemia or loss of oxygen for the short period they

said he went without??? I still wonder about it. Did anyone else have

issues with their pregnancies or deliveries I am interested to know.

thanks for listening,

> >

> > I would ask for written clarification of why it " has " to be

changed.

>

> Me too. Sounds fishy. In our state, autism has additional

> requirements the school must meet that other disabilities don't, so

> they could be setting themselves up to have to do less (or maybe

not).

>

> Also, HFA is not an official dx. The 5 official PDDs are: autism,

> asperger, PDD-NOS, rett's syndrome, and childhood disintegrative

(sp?)

> disorder. PDD-NOS is someone with autistic symptoms severe enough

to

> warrant a dx, but the pattern or severity doesn't fit the specs for

> any of the other PDDs. The only difference between autism and

> asperger are that asperger is later onset, involves no loss of early

> language skills, and language difficulties are usually not as severe

> as autism. My asperger son fits the criteria for autism except he

> didn't have that early language delay.

>

> Ruth

>

August 13, 2008

here in NY, they changed the classification of autism. they stated if a child isn't " classic autism" they will be classified as OTH (other health impaired). there is no more in between. I disagreed, and so did our doctor, but they wrote to the doctor stating my son Will still get all the same services as with autism but under 'OHI' with a medical DX of Autism. I wanted on his IEP/ISP to say on it somewhere autism so he doesn't get punished for something that is related to a neurological DX. (which he has in the past) I don't know why if everything is staying the same, why it's so important for the school to change his Classification from autism to OHI even though specialist stated he is autistic. the school is saying that HFA doesn't interfer with his school work - {{{ but it is }}} because he needs so much help. and with new work, he needs more one on one help. they are saying he

doesn't have the meltdowns, and he is progressing. I'll see how this goes in Middle school - if they can keep up with him. they never 'see anything' until I have to verbally tell them, show them, put it in writing, then after the whole year is up, they get it and work with him - like on the last month.r_woman2 <me2ruth@...> wrote: >> My son was dx

Aspergers Syndrome and on his paperwork they putAutism....and lookedï¿½ at me as if I would be in shock or whatever...I think they did this because, in the school definition, all PDDs are"coded" autism. At least that is how our state is (Texas). They arevery explicit that "autism" includes the entire spectrum. My son wascoded autism also for his 504 Plan. They also looked at me and pausedand asked if it was okay. I'm not sure what they would have done ifI'd said I minded. I guess I'll never know. I think some states are different though.Ruth

August 13, 2008

Rose, what did you mean by if they can keep up with him...?????

But keep after the school...5th grade is the hardest...and I know my son had a very difficult time and he had a terrible case manager who was on his case all the time....but doing it in the wrong manner which angered him and turned him off.

I know when noise overloads him ...he put his head on the lable to shut it out...Keep an eye on what is happening. Go sit in a classroom and watch. Maybe your son should have a meltdown in school so they could see....

Jan

Janice Rushen

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>> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and lookedï¿½ at me as if I would be in shock or whatever...I think they did this because, in the school definition, all PDDs are"coded" autism. At least that is how our state is (Texas). They arevery explicit that "autism" includes the entire spectrum. My son wascoded autism also for his 504 Plan. They also looked at me and pausedand asked if it was okay. I'm not sure what they would have done ifI'd said I minded. I guess I'll never know. I think some states are different though.Ruth

August 13, 2008

In middle school and high school there is lots of group work at a more sophisticated level--less teacher structure/support. This is really, really difficult for HFA, Asperger, speech delayed, bipolar kids. You can ask that group work be done only if your child is OK with it. The alternative should be an individual project with an appropriate amount of work. If three kids are to do a presentation on a subject covinger 6 areas, one person could could 2 areas or 6 areas in less detail. All this stuff is important to negotiate ahead of time. Elaine

In a message dated 8/13/2008 7:21:29 A.M. Eastern Daylight Time, beachbodytan2002@... writes:

here in NY, they changed the classification of autism. they stated if a child isn't " classic autism" they will be classified as OTH (other health impaired). there is no more in between. I disagreed, and so did our doctor, but they wrote to the doctor stating my son Will still get all the same services as with autism but under 'OHI' with a medical DX of Autism. I wanted on his IEP/ISP to say on it somewhere autism so he doesn't get punished for something that is related to a neurological DX. (which he has in the past)

I don't know why if everything is staying the same, why it's so important for the school to change his Classification from autism to OHI even though specialist stated he is autistic.

the school is saying that HFA doesn't interfer with his school work - {{{ but it is }}} because he needs so much help. and with new work, he needs more one on one help. they are saying he doesn't have the meltdowns, and he is progressing. I'll see how this goes in Middle school - if they can keep up with him. they never 'see anything' until I have to verbally tell them, show them, put it in writing, then after the whole year is up, they get it and work with him - like on the last month.r_woman2 <me2ruth > wrote:

>> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and lookedï¿½ at me as if I would be in shock or whatever...I think they did this because, in the school definition, all PDDs are"coded" autism. At least that is how our state is (Texas). They arevery explicit that "autism" includes the entire spectrum. My son wascoded autism also for his 504 Plan. They also looked at me and pausedand asked if it was okay. I'm not sure what they would have done ifI'd said I minded. I guess I'll never know. I think some states are different though.Ruth

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

August 13, 2008

>

> ... they are saying he doesn't have the meltdowns, and he is

progressing. I'll see how this goes in Middle school - if they can

keep up with him. they never 'see anything' until I have to verbally

tell them, show them, put it in writing, then after the whole year is

up, they get it and work with him - like on the last month.

Gee, this sounds familiar. This is what we run into too. You have my

sympathies.

I feel like part of my problem is getting resources together on my

side. It took me several years to find speech/OT therapists and a

psychiatrist that specialize in Asperger/ASD and so can actually be

helpful. And now it is taking forever to get everything really going

because of waiting lists. And stuff happens. They fired his speech

therapist and don't have one to replace her. So, he is just getting a

few sessions in this summer from an SLP who will be going out on

maternity leave then staying home with her baby (at the same place).

And I'm running ragged at work and having problems helping him get his

speech " homework " done.

Anyway, it is driving me nuts. I just wish we could get something

stable going for, gee, at least a year or even 6 months. I hope you

have more patience than me.

Ruth

August 13, 2008

> I am really confused now cause my son is suppose to be dx with

> aspherger but he did have the symptoms early on and did have speech

> delay its not like he was doing ok and then things changed

If you are taking votes, from what you have described in your posts, I

would vote autism, HFA if you want. I don't think the label

really matters though.

Asperger kids have differences from the beginning too, they just

aren't as obvious as not talking until age 4. AS kids have

differences that are similar to typical kid behavior, so everybody

thinks they will just grow out of it--but then they don't--or at least

not as fast and/or not on their own.

> Another thing Ive been wanting to ask other moms. Did any moms

> have problems with their pregnancies or deliveries because I have

> talked to a few different moms that their kids have AS or whaterver

> we are calling it and they had similar problems that I had.

I did, but they were different than yours. I went into pre-term labor

(with twins--my aspie is a twin) 3 months early, was on drugs to

prevent the early birth, developed toxemia and gestational diabetes,

was on complete bedrest and the babies were born about 3 weeks early.

But, my aspie had a perfect apgar score and neither baby was preemie

weight even though they were a little early. So, he appeared

perfectly normal. I was actually the one who had difficulties--not

the babies. Although the delivery went without incident, not even

a cesarean. I figure since I was sort of in labor for 3 months, there

wasn't much left to go once they actually came out. They had to pull

my aspie out by his feet, but that is pretty typical with twins and

there were no problems. OK, probably more than you wanted to know LOL.

Ruth

August 13, 2008

We had this topic a long time ago, and I am a yes; took my two boys out after too long with forcepts and then, the second was a c but they had issues; turned blue (first one) and we have had great development until he was about 18 months and had a very unnatural temper and that is when I started trying to get help but he goes down hill a bit each year. Ruthie Dolezal

From: ginak1117@...Date: Wed, 13 Aug 2008 07:25:25 +0000Subject: ( ) Re: Aspergers versus HFA

Boy Ruth ,I am really confused now cause my son is suppose to be dx with aspherger but he did have the symptoms early on and did have speech delay its not like he was doing ok and then things changed he started out the way he is. I feel like I knew from the time that he was an infant that something was just not right. I told my husband that from the very beginning. I have an older daughter so I wasnt a first time mom and I know all kids are different but I just knew something was off but I couldnt put my finger on it until of course he got a little bigger and wasnt doing the things he should have been doing for his age. Another thing Ive been wanting to ask other moms. Did any moms have problems with their pregnancies or deliveries because I have talked to a few different moms that their kids have AS or whaterver we are calling it and they had similar problems that I had. I started out with a great preganancy but I ended up with toxemia and my labor had to be induced 2 weeks early and my delivery was terrible he just did not want to come out he had a hard time being born and when he finally was delivered he was totally blue my sister says almost purle in color and she thought he was stillborn and I was afraid because I did not hear him cry and they had the neonatal unit in there reviving him yet they told me he didnt go without oxyegen for too long cause I was worried he would have problems. They assured me he was ok, and not to worry. The doctors also have told me even if he didnt breathe right away after being born that they do not associate autisim with lack of oxygen at birth. I was worried he might have cerabal palsy or something like that, but the docs said dont worry he is fine and now he is an aspie. Do you think there is any relationship to his rough birth and the toxemia or loss of oxygen for the short period they said he went without??? I still wonder about it. Did anyone else have issues with their pregnancies or deliveries I am interested to know. thanks for listening, > >> > I would ask for written clarification of why it "has" to be changed. > > Me too. Sounds fishy. In our state, autism has additional> requirements the school must meet that other disabilities don't, so> they could be setting themselves up to have to do less (or maybe not).> > Also, HFA is not an official dx. The 5 official PDDs are: autism,> asperger, PDD-NOS, rett's syndrome, and childhood disintegrative (sp?)> disorder. PDD-NOS is someone with autistic symptoms severe enough to> warrant a dx, but the pattern or severity doesn't fit the specs for> any of the other PDDs. The only difference between autism and> asperger are that asperger is later onset, involves no loss of early> language skills, and language difficulties are usually not as severe> as autism. My asperger son fits the criteria for autism except he> didn't have that early language delay.> > Ruth>

August 13, 2008

Ruth, that is amazing, teachers on maternity leave. I think every teacher my son had went on maternity leave. this last year, the sub teacher was teaching a math lesson and told the class she would be with them in one minute. she had to call in another teacher to show her how to do that math. (she didn't understand it) Then, she showed the whole class the wrong way, so on their math test, they all failed. And I know this because I keep tract of all my sons test and questioned that one. I was told the sub didn't know how to do that math problem and taught the whole class wrong, that they all got a very low grade. And my poor son said to me, I understood her how she explained it to me and got them all wright " her way " but because she explained it wrong, I failed !. Have you ever?????? Roser_woman2 <me2ruth@...> wrote: >> ... they are saying he doesn't have the meltdowns, and he isprogressing. I'll see how this goes in Middle school - if they cankeep up with him. they never 'see anything' until I have to verballytell them, show them, put it in writing, then after the whole year isup, they get it and work with him - like on the last month.Gee, this sounds familiar. This is what we run into too. You have

mysympathies.I feel like part of my problem is getting resources together on myside. It took me several years to find speech/OT therapists and apsychiatrist that specialize in Asperger/ASD and so can actually behelpful. And now it is taking forever to get everything really goingbecause of waiting lists. And stuff happens. They fired his speechtherapist and don't have one to replace her. So, he is just getting afew sessions in this summer from an SLP who will be going out onmaternity leave then staying home with her baby (at the same place). And I'm running ragged at work and having problems helping him get hisspeech "homework" done.Anyway, it is driving me nuts. I just wish we could get somethingstable going for, gee, at least a year or even 6 months. I hope youhave more patience than me.Ruth

August 13, 2008

thanks for pointing this out. How can I negotiate ahead of time if I didn't know anything about this ?.... I can see this being had for my son because of his lack of expressive language. all those meetings I've been too. Not one person mentioned this to me. HUGS Rosetroyfamily@... wrote: In middle school and high school there is lots of group work at a more sophisticated level--less teacher structure/support. This

is really, really difficult for HFA, Asperger, speech delayed, bipolar kids. You can ask that group work be done only if your child is OK with it. The alternative should be an individual project with an appropriate amount of work. If three kids are to do a presentation on a subject covinger 6 areas, one person could could 2 areas or 6 areas in less detail. All this stuff is important to negotiate ahead of time. Elaine In a message dated 8/13/2008 7:21:29 A.M. Eastern Daylight Time, beachbodytan2002 writes: here in NY, they changed the classification of autism. they stated if a child isn't " classic autism" they will be classified as OTH (other health impaired). there is no

more in between. I disagreed, and so did our doctor, but they wrote to the doctor stating my son Will still get all the same services as with autism but under 'OHI' with a medical DX of Autism. I wanted on his IEP/ISP to say on it somewhere autism so he doesn't get punished for something that is related to a neurological DX. (which he has in the past) I don't know why if everything is staying the same, why it's so important for the school to change his Classification from autism to OHI even though specialist stated he is autistic. the school is saying that HFA doesn't interfer with his school work - {{{ but it is }}} because he needs so much help. and with new work, he needs more one on one help. they are saying he doesn't have the meltdowns, and he is progressing. I'll see how this goes in Middle school - if they can keep up with him. they never 'see anything' until I have to verbally tell them,

show them, put it in writing, then after the whole year is up, they get it and work with him - like on the last month.r_woman2 <me2ruth > wrote: >> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and lookedï¿½ at me as if I would be in shock or whatever...I think they did this because, in the school definition, all PDDs are"coded" autism. At least that is how our state is (Texas). They arevery explicit that "autism" includes the entire spectrum. My son wascoded autism also for his 504 Plan. They also looked at me and pausedand asked if it was okay. I'm not sure what they

would have done ifI'd said I minded. I guess I'll never know. I think some states are different though.Ruth Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

August 13, 2008

=Wow, your post about your child's birth was so similar to mine it

really struck me. Pregnancy was a mess, terrible fluid swelling, one

problem after another, went full term, then 45 hours of labor,

inhaled meconium, his cord around his arm/armpit/shoulder, heart

dropped to practically nothing, got stuck, they had to dislocate

shoulders to get him out and still stuck, they cut and ripped me from

stem to stern, I hemorhagged, the finally got him out after a few

desperate attempts with a vacuum, on the way to the OR for an

emergency c-section, he was blue/limp, quiet, his APGAR was a 2 out

of 10, and he was in the NICU for 4 days. My pregancy was smooth -

until I had the first I ever had in my life flu shot - MSG is one of

the preservatives in it and I am allergic to MSG. Rashes, migraines,

vomiting, allergic reactions to what they gave to deal with the

problems, swelled up with such fluid - went from a shoes size 8.5 to

a 12. Horrid. I worried every day after he was born and on his 4th

birthday felt relieved and told my husband he would be ok, we were

past the " danger " ages for developmental disorders. 2 months later,

he started the downhill slide after a fever.

> > >

> > > I would ask for written clarification of why it " has " to be

> changed.

> >

> > Me too. Sounds fishy. In our state, autism has additional

> > requirements the school must meet that other disabilities don't,

so

> > they could be setting themselves up to have to do less (or maybe

> not).

> >

> > Also, HFA is not an official dx. The 5 official PDDs are:

autism,

> > asperger, PDD-NOS, rett's syndrome, and childhood disintegrative

> (sp?)

> > disorder. PDD-NOS is someone with autistic symptoms severe

enough

> to

> > warrant a dx, but the pattern or severity doesn't fit the specs

for

> > any of the other PDDs. The only difference between autism and

> > asperger are that asperger is later onset, involves no loss of

early

> > language skills, and language difficulties are usually not as

severe

> > as autism. My asperger son fits the criteria for autism except he

> > didn't have that early language delay.

> >

> > Ruth

> >

>

August 13, 2008

Aspergers, HFA, Classic autism, PDD-NOS are all under the autism spectrum. I can see if the child is DXed with autism and the school wants to say aspergers and he/she is still getting the right services " fine ". but my school wants to take my son off the autism spectrum DX and give him " OHI " which would be a Hugh disadvantage to him because the staff won't have a clear understanding of my son's autism with a classification of OHI. They still want to change him from an autism classification to OHI but added a medical DX of autism. What sense does that make and why ? how does that benefit the school by changing my son's classification from autism to now OHI ? Rose <cindyelgamal@...> wrote: Rose – My 18 yo son is Aspergers (diagnosed at 15; had ADHD dx at 5). Even though he did not have a language delay (speech) he has st From: [mailto: ] On Behalf Of RoseSent: Monday, August 11, 2008 6:54 AM Subject: Re: ( ) Aspergers versus HFA confusing, right !. IMO, I feel its important for that to be clear -

across the board - so our kids can get the right services. example, if a child has a DX of aspergers, and it's believed that aspergers had speech when younger, then in school they don't have to focus with all areas of speech, including writing skills & reading that goes along with speech. (because speech isn't that main problem) they can focus more on the social skills. also, if a child is DXed with autism or HFA, it would be clear to work on the pragmatics, speech writing and reading, and still be aware this child needs social skills. If it keeps changing depending on what doctor or conference you go to, the fight in the schools for services will never end to get our children the right help they need. I brought this up to my therapist about the differences between the Classic Autism, Autism, HFA,

Aspergers, & PDD-NOS and he told me instead of focusing on the DX, focus on the right services he needs and work on that. He did mention the correct DX was important for medical purposes, but for me, the services are important. right now, our school for what ever reason whats to continue the SAME services with my son. but they are very strong with changing his classification to OHI with a medical alert of Autism. I don't know why they felt that strong to do this change of classification. but his services are still the same as from when he was in Kindergarten. just for middle school they want to change it. they said, unless he has Classic autism, it has to be changed. <cindyelgamalsbcglobal (DOT) net> wrote: At one time it was thought by many experts that they were different – HFA had language delay while Aspergers did not. Today most experts believe there is no difference. In fact, I just read an article on Tony Attwood’s site in which he says there is no difference; within the last year or so I read an article on his site that said they were different (for the reason I stated above). From: [mailto: ] On Behalf Of ginaSent: Sunday, August 10, 2008 6:46 PM Subject: ( ) Re: PDD-NOS being re-named? ,I have the same question as you: what is the difference between AS and HFA. My son has been refferred to as both so I just assummed they were the same thing??????? > > >> > Thanks for that info. I find it very interesting in that my Aspie son> > fits into this criteria, especially the sensory stuff, but he has no> > speech delay, although he has trouble with communicating his thoughts> > sometimes and is very bright.> >> > I suspect, that this "new" diagnostic criteria is to create a label> > for spectrum kids that clearly have issues, but are not "classic> > autism". Notice the line "A diagnosis can tell you what your child> > does not have." I notice that the article makes it very clear> > that "MSDD" will not be considered "autism" or even a "spectrum> > disorder". So the

trend to list ADD/ADHD, Sensory Processing,> > apraxia, non verbal learning disorder, etc. etc. as part of spectrum> > disorders will cease to increase the autism numbers. Never mind that> > all those issues are rampant in our kids, and certainly were NOT> > 20,30 years ago or more.> >> > I also think that will be very convenient for the government, NIH,> > CDC, FDA, and medical establishment such as AAP, AMA to refute the> > increase in spectrum disorders in the past 20 years and the autism> > epidemic.> >> > I don't care what NIH calls it - I want them to address the many> > causes and how to help our kids get better, and make sure this> > epidemic stops.> >> >> > > I was reading on the medline/NIH website today at work and did a> > > search on PDD-NOS. The results gave a site called

dbpeds.org, which> > > is developmental and behavioral pediatrics online. Apparently PDD-> > NOS> > > is going to be re-named to "multisystem developmental disorder".> > > There was a great handout in PDF form that described my son> > perfectly.> > >> > > Anyone else ever heard of this? Here is the pamphlet's text.> > >> > > Multisystem Developmental Disorder> > > by Henry L Shapiro MD> > > Multisystem Developmental Disorder (MSDD) is one of the newer terms> > to> > > describe a group> > > of children with communication, social, and sensory processing> > > problems who do not fit into> > > other categories such as autism. MSDD is usually diagnosed in early> > > childhood.> > > Abnormal reaction to sounds, smells, textures,

movement,> > temperature,> > > and other> > > body sensations> > > Disturbed behavior that seems more related to unpleasant experiences> > > than lack of> > > interest in participating> > > Some impairment in communication development> > > Relatively normal interest in communicating and interacting socially> > > when they are> > > not reacting to their environment> > > Varying amounts of attention and organization problems> > > Varying amounts of coordination problems or clumsiness> > > Varying amounts of problems regulating sleep, activity, and appetite> > > These problems must interfere significantly with everyday life, and> > > interfere with normal> > > development to warrant a diagnosis.> > > MSDD is thought to differ from autism in

several ways. First,> > children> > > with MSDD tend to> > > respond to treatment better than children with autism. They are less> > > likely to have severe> > > delays in mental ability, and less likely to have severe rituals or> > > repetitive behaviors. Still,> > > these diagnoses are hard to tell apart in young children since> > > children with both diagnoses,> > > Autism and MSDD, may have similar behavior problems.> > > Emotional outbursts or "meltdowns"> > > Refusal to eat certain foods> > > Insistence on wearing certain clothing, or not liking clothing at> > all> > > Extreme reactions to noise or movement> > > Avoidance of sensory experiences or seeking out extreme sensory> > experience> > > Abnormal reaction to pain> > > Sleep

disturbance> > > Avoidance or lack of pleasure in being touched or cuddled in spite> > of> > > interest in> > > being with you socially> > > Refusal to have hair washed, touched, combed, cut, etc.> > > Toe walking. Refusal to walk on certain surfaces (such as walking on> > > grass in bare> > > feet)> > > Like many childhood developmental problems, we have few specific> > > treatments or cures.> > > Most of our treatment is meant to help a child work around a> > problem,> > > or to guide them into> > > learning or discovering skills that they are not mastering on their> > own.> > > What kind of problems do children with MSDD have?> > > Is it MSDD or Autism?> > > What behaviors are seen in MSDD?> > > How do we treat MSDD?>

> > Multisystem Developmental Disorder Page 1> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > > Sensory Integration therapy is often a mainstay of treatment. It> > tries> > > to help a child> > > overcome their extreme sensitivity and reaction to their sensory> > > experiences. Sensory> > > Integration therapy is targeted at problems related to sensation.> > > These include problems> > > with touch, body position, movement, sound, food textures, and so> > > forth. Techniques may> > > involve deep pressure, brushing, and swinging. We do not know how> > > these treatments work> > > but often they can be helpful.> > > Speech and Language therapy is also an important part of the> > equation.> > > Sometimes,> > > therapy has to

be aimed at social and pragmatic problems. A home> > > program is crucial, since> > > children need to practice skills throughout the day. A therapist> > > should be sharing goals and> > > techniques with parents and teachers. There are many handouts on> > this> > > website that can> > > help.> > > Behavior specialists can also be helpful in helping parents choose> > > goals and learn> > > techniques to teach appropriate behaviors and eliminate problem> > > behaviors. In general,> > > psychotherapy for the child is not effective for MSDD.> > > Medications can help in certain cases, but medication is not> > curative> > > Potential side effects> > > and treatment benefit have to be weighed carefully.> > > It is important to be an advocate for your child. Make

sure that you> > > and the doctor are very> > > clear about the goals of treatment, including when you are going to> > > stop or change> > > treatment.> > > Children often have to be given diagnoses to get services. Sometimes> > > the diagnosis also> > > helps guide treatment. It may predict how the child may do in the> > > future. A diagnosis can> > > also tell you what your child does not have.> > > The MSDD diagnosis is getting better known, and is now being taught> > in> > > early childhood> > > special education courses. Some clinicians will still diagnose> > autism,> > > pervasive> > > developmental disorder, developmental delay, and language> > impairment.> > > Sensory> > > integration disorder is also

diagnosed.> > > The most important thing is to understand your child's needs and> > > strengths, to set goals,> > > monitor progress, and make changes when things are not working.> > > First published: 5/27/2004> > > References> > > Zero to Three Diagnostic Classification Task Force. (1994).> > Diagnostic> > > Classification> > > of Mental Health and Developmental Disorders of Infancy and Early> > > Childhood> > > (DC:0-3)™. Zero to Three. ISBN: 0943-657-32-6> > > Advocacy> > > Multisystem Developmental Disorder Page 2> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > >> >>

August 13, 2008

On Apr 11, 3:24pm, " gina " wrote:

} I am still confused with the difference between aspherger and high=20

} functioning autisim. My son was dx by 2 different docs one saying he=20

} is HFA and the other saying he is AS. My son did not speak until he=20

} was about 4 after major speech therapy. His therapist told me that he=20

} did have speech but it was aspie speech. Basically they have their=20

} own language.???Anyone heard that before?? I know that he was a=20

I've never heard of that. By the actual diagnostic criteria, a child

with AS is not supposed to have had language delay, so that sounds pretty

weird. But we used to call my friend's daughter's speech " Rose-lish "

because it sounded so much like another language. Perhaps that's the

sort of thing he's talking about.

My son had more typical speech problems - reversing pronouns, a lot

of trouble with questions, other stuff I don't remember now.

I say, go with whatever level gets you the most help. The

" autism " diagnosis is very useful for us, because it gets my son

services from the Regional Center. An AS diagnosis wouldn't/

} little consistant with some of his jibberish, he would use some of=20

} the same blurbs over and over for certain things, kind of like he was=20

} talking and asking for the same things using the same words. Do ya=20

} know what Im trying to say, cause I cant get it out the way Im trying=20

} to, now I sound like my son, maybe it is rubbing off LOL, anyway he=20

} would get very angry because he would talk this jibberish to me like=20

} I was suppose to understand him and because I didnt he would become=20

} violent, throwing things and throwing himself on the floor until I=20

} could figure out what he wanted. The amazing thing was when he=20

} finally was able to talk his entire demeanor changed. He was a=20

} different kid because he could finally communicate. Its like being a=20

} baby stuck in a bigger boys body I guess. That must be terrible to=20

} know what your saying but you cant be understood. The really amazing=20

This is exacty why they use PECS and sign language for special needs

kids. (And also baby signs.) Because not being able to communicate

is so frustrating!

} thing was how he could not talk yet he could write words on his=20

} magnadoodle only if they were street names or signs. He was obsessed=20

} with signs and street signs. At 3 years old he could write every=20

} letter of the alphabet but didnt even know what the alphabet was. He=20

} memorized every street sign and names of streets when we would be=20

} driving around and he had magnadoodles in the car also so he would=20

} copy the letters from the street names and he would draw the signs=20

} and put the name in it. for example he would draw a stop sign and=20

} write stop in the middle of it just like a real stop sign was. Every=20

} toy he had was anything to do with signs. He had sign puzzles,=20

} books , plastic street signs that he would line up along my kitchen=20

} counters and table perfectly in a row, hundreds of these little=20

} plastic signs and if one was moved out of place he would fix it=20

} immediately. It would upset him if one would get knocked over or out=20

My little guy really likes signs too, though the interest comes and

goes. It's one of his favorite things at the moment.

Willa

August 14, 2008

How can a school change his DX???? The school I would think has to go by what the Psychiatrist dx the child????

Jan

Janice Rushen

Mom, Mentor, Wife, Teacher, Advocate, Accountant,

Maid, Taxi, Shopper, Bulletin Board Artist

Nanny, Crafter, Therapist, Friend, Sister, Aunt,

Daughter, Grand-daughter, Personal Care Aide,

Student, Believer, and Giver.

At one time it was thought by many experts that they were different – HFA had language delay while Aspergers did not. Today most experts believe there is no difference. In fact, I just read an article on Tony Attwood’s site in which he says there is no difference; within the last year or so I read an article on his site that said they were different (for the reason I stated above).

From: [mailto: ] On Behalf Of ginaSent: Sunday, August 10, 2008 6:46 PM Subject: ( ) Re: PDD-NOS being re-named?

,I have the same question as you: what is the difference between AS and HFA. My son has been refferred to as both so I just assummed they were the same thing??????? > > >> > Thanks for that info. I find it very interesting in that my Aspie son> > fits into this criteria, especially the sensory stuff, but he has no> > speech delay, although he has trouble with communicating his thoughts> > sometimes and is very bright.> >> > I suspect, that this "new" diagnostic criteria is to create a label> > for spectrum kids that clearly have issues, but are not "classic> > autism". Notice the line "A diagnosis can tell you what your child> > does not

have." I notice that the article makes it very clear> > that "MSDD" will not be considered "autism" or even a "spectrum> > disorder". So the trend to list ADD/ADHD, Sensory Processing,> > apraxia, non verbal learning disorder, etc. etc. as part of spectrum> > disorders will cease to increase the autism numbers. Never mind that> > all those issues are rampant in our kids, and certainly were NOT> > 20,30 years ago or more.> >> > I also think that will be very convenient for the government, NIH,> > CDC, FDA, and medical establishment such as AAP, AMA to refute the> > increase in spectrum disorders in the past 20 years and the autism> > epidemic.> >> > I don't care what NIH calls it - I want them to address the many> > causes and how to help our kids get better, and make sure this> > epidemic

stops.> >> >> > > I was reading on the medline/NIH website today at work and did a> > > search on PDD-NOS. The results gave a site called dbpeds.org, which> > > is developmental and behavioral pediatrics online. Apparently PDD-> > NOS> > > is going to be re-named to "multisystem developmental disorder".> > > There was a great handout in PDF form that described my son> > perfectly.> > >> > > Anyone else ever heard of this? Here is the pamphlet's text.> > >> > > Multisystem Developmental Disorder> > > by Henry L Shapiro MD> > > Multisystem Developmental Disorder (MSDD) is one of the newer terms> > to> > > describe a group> > > of children with communication, social, and sensory processing> > > problems who do

not fit into> > > other categories such as autism. MSDD is usually diagnosed in early> > > childhood.> > > Abnormal reaction to sounds, smells, textures, movement,> > temperature,> > > and other> > > body sensations> > > Disturbed behavior that seems more related to unpleasant experiences> > > than lack of> > > interest in participating> > > Some impairment in communication development> > > Relatively normal interest in communicating and interacting socially> > > when they are> > > not reacting to their environment> > > Varying amounts of attention and organization problems> > > Varying amounts of coordination problems or clumsiness> > > Varying amounts of problems regulating sleep, activity, and appetite> > > These

problems must interfere significantly with everyday life, and> > > interfere with normal> > > development to warrant a diagnosis.> > > MSDD is thought to differ from autism in several ways. First,> > children> > > with MSDD tend to> > > respond to treatment better than children with autism. They are less> > > likely to have severe> > > delays in mental ability, and less likely to have severe rituals or> > > repetitive behaviors. Still,> > > these diagnoses are hard to tell apart in young children since> > > children with both diagnoses,> > > Autism and MSDD, may have similar behavior problems.> > > Emotional outbursts or "meltdowns"> > > Refusal to eat certain foods> > > Insistence on wearing certain clothing, or not liking clothing at> >

all> > > Extreme reactions to noise or movement> > > Avoidance of sensory experiences or seeking out extreme sensory> > experience> > > Abnormal reaction to pain> > > Sleep disturbance> > > Avoidance or lack of pleasure in being touched or cuddled in spite> > of> > > interest in> > > being with you socially> > > Refusal to have hair washed, touched, combed, cut, etc.> > > Toe walking. Refusal to walk on certain surfaces (such as walking on> > > grass in bare> > > feet)> > > Like many childhood developmental problems, we have few specific> > > treatments or cures.> > > Most of our treatment is meant to help a child work around a> > problem,> > > or to guide them into> > > learning or discovering skills that they

are not mastering on their> > own.> > > What kind of problems do children with MSDD have?> > > Is it MSDD or Autism?> > > What behaviors are seen in MSDD?> > > How do we treat MSDD?> > > Multisystem Developmental Disorder Page 1> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > > Sensory Integration therapy is often a mainstay of treatment. It> > tries> > > to help a child> > > overcome their extreme sensitivity and reaction to their sensory> > > experiences. Sensory> > > Integration therapy is targeted at problems related to sensation.> > > These include problems> > > with touch, body position, movement, sound, food textures, and so> > > forth. Techniques may> > > involve deep pressure, brushing, and swinging.

We do not know how> > > these treatments work> > > but often they can be helpful.> > > Speech and Language therapy is also an important part of the> > equation.> > > Sometimes,> > > therapy has to be aimed at social and pragmatic problems. A home> > > program is crucial, since> > > children need to practice skills throughout the day. A therapist> > > should be sharing goals and> > > techniques with parents and teachers. There are many handouts on> > this> > > website that can> > > help.> > > Behavior specialists can also be helpful in helping parents choose> > > goals and learn> > > techniques to teach appropriate behaviors and eliminate problem> > > behaviors. In general,> > > psychotherapy for the child is not effective

for MSDD.> > > Medications can help in certain cases, but medication is not> > curative> > > Potential side effects> > > and treatment benefit have to be weighed carefully.> > > It is important to be an advocate for your child. Make sure that you> > > and the doctor are very> > > clear about the goals of treatment, including when you are going to> > > stop or change> > > treatment.> > > Children often have to be given diagnoses to get services. Sometimes> > > the diagnosis also> > > helps guide treatment. It may predict how the child may do in the> > > future. A diagnosis can> > > also tell you what your child does not have.> > > The MSDD diagnosis is getting better known, and is now being taught> > in> > > early

childhood> > > special education courses. Some clinicians will still diagnose> > autism,> > > pervasive> > > developmental disorder, developmental delay, and language> > impairment.> > > Sensory> > > integration disorder is also diagnosed.> > > The most important thing is to understand your child's needs and> > > strengths, to set goals,> > > monitor progress, and make changes when things are not working.> > > First published: 5/27/2004> > > References> > > Zero to Three Diagnostic Classification Task Force. (1994).> > Diagnostic> > > Classification> > > of Mental Health and Developmental Disorders of Infancy and Early> > > Childhood> > > (DC:0-3)™. Zero to Three. ISBN: 0943-657-32- 6> > > Advocacy> >

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RE: Aspergers versus HFA

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