RE: Aspergers versus HFA

[Guest guest]

Yes ...the teachers do get maternity leave...the sad thing is that they can never find a replacement and the kids suffer. It is very difficult to find a sub that is certified in Special Education or speech...so, yes the kids are the ones that suffer.

Jan

Janice Rushen

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>> ... 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

[Guest guest]

, your post caught my attention because your son is the exact opposite of mine. your son's strengths is my son weakest areas...but it was amazing how you wrote that your son didn't have speech till 4, but can read very well. Also, the two different doctors that tested your son, do they both have the same information on his past history, with his speech delay. I wonder if they both used the same testing material. but I would think it wouldn't matter on what testing they used or who did the testing. if your child is DXed with aspergers, all across the board should be aspergers. if your son is border line between aspergers and autism, they why didn't they say that. Like > he's HFA only because of the lack of speech early on in his childhood, but aspergers best describes him now because of his progress with speech and his progress through all his interventions. ( maybe from 1-4 years

old his dx is HFA - from 5-present his DX aspergers)..... *with a neugological disorder, do you think there could be such a thing?. I know autism could never be cured, but can a child progress so much the DX could change? what do you all think about that thought ?. Rosegina <ginak1117@...> wrote: 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>

[Guest guest]

>

> Aspergers, HFA, Classic autism, PDD-NOS are all under the autism

spectrum. ... 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, you have to distinguish medical dx from school classifications.

Also, keep in mind that they are required to support all your son's

needs regardless of what label they give him. It sounds to me like

your state has made a classification change and your school is

changing your son's classification to match the state. In my state,

the autism classification includes the entire spectrum, so your son

would be classified autism. However, some states only put classic

autism in autism and put the other spectrum disorders elsewhere. It

sounds like your state has just switched to the first, putting the

other spectrum in OHI. Assuming you have asked them why they are

doing this, do any of their answers seem to support this? To make

sure they are not doing anything fishy, ask them a lot of hard

questions about how his services may change.

Ruth

[Guest guest]

Jan, they can and will do and ARE doing it, whatever they can to get out of providing the services. That is why we moved, home schooled my 8th grader last year, and our NEW SCHOOL is going to meet his needs ('cuz they know we had lawsuits if we wanted to press against our old school) but we are doing a half day this year with him home schooling half day. All the subjects (main ones) will be done in the school the first four periods of the day. He will go to school 8-10:10 on Wednesdays and 8-11:11 the other four days of the week. I have to pick him up, but the home school assistance program is LITERALLY across the street from his middle school, so I am going to have him walk over there each day, do some of his work, and pick him up by 12 noon (that way, I have a few extra minutes and he can work over there, quietly and without us bothering him). He is excited, and it will be great for all of us (and that way, he has to do the work). We are excited, and nervous, but after over $10,000 in law bills just last year with our old school, plus our own time, lost work, etc., we decided we would not do this anymore (fighting the school for what they refuse to give us). And, they cannot...........if they agree, they are admitting fault, have to pay, and are open for lawsuits, so they are NOT going to change; that is the truth, the facts, and the way it is. They don't have to do anything or use anything from anyone else, so they won't change, I am here to tell you! Sounds like the battle we spent thousands on. Our attorney has won federal cases in DC and that did not make any difference. He could NOT believe it!

PS The battle with the school for lawsuits is an 8-10 year minimum battle, so that is up to you; by then, I could care a less; this was NOT about the money for us but the education / my son getting what he needs. I had had it, my husband had had it, and we just could not do it any more! All I care about is my kids, so that is my two cents (even though I have not been typing lately!!!!). I AM STILL HERE!!!

Ruthie Dolezal

From: jrushen@...Date: Thu, 14 Aug 2008 03:42:07 -0700Subject: RE: ( ) Aspergers versus HFA

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> > > Multisystem Developmental Disorder Page 2> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > >> >>

[Guest guest]

No oxygen deficiency,,,,but Ian would come, either. Had to be "suctioned" out. I was also induced with Pitocin. He had breathed in Mecconium, as well.

Hmmm.....

From: BRYAN DOLEZAL <DOLEZAL123@...>Subject: RE: ( ) Re: Aspergers versus HFAAspergers Treatment Date: Wednesday, August 13, 2008, 8:58 PM

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: ginak1117att (DOT) netDate: 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>

[Guest guest]

It IS called ASPERGER'S. Pronounced: "Ass, PURR, Grrrrrs." It is named after a man with that last name.

I don't think there IS a difference between HFA and Autism. I have heard parents of AUTISTIC children with lots of services and improvements tell people their child now has high functioning autism; from my personal and professional experience, the only difference I know between AUTISM AND ASPERGER'S are:

Asperger's children develop normally as far as walking, sitting, talking, etc. Where Autistic children often either have a huge delay in their speech and did not speak until three or four years of age and / or when they do, only repeat what they hear / don't create or can't create their own sentences without your prompting! Also, Asperger's children often potty train delayed but NOT nearly like the autistic child at more like 5-6 years of age.

I would contend that the severe speech / talking issue is NOT Asperger's Syndrome but autism, and because of services, the child has improved. Asperger's children often have problems with the meaning until you teach them, so if a word has multiple meanings, until they are taught the other meanings, the only meaning they know is the one they learned, so if four is the number four, when you say, "for" they don't get that. Bad example, but that is one that just 'came to me.'

Also, our children with AS often cannot read your expressions and interpret them. I would suggest researching on your own, and discovering the differences and learning yourself; and I would NOT worry about the diagnose but getting services. And, plan to do it more individually and on your own than depending upon the school; if you wait for MOST (not all) schools, your child will be 14 and have had no services or improvements (like my 14 year year old, now stuck at what he learned in school up until fifth grade, when he was in a different district and go tons of services------------------------------has learned basically nothing since the school failed him); now, we are paying, paying, paying to fix the damage.

So, that is my more than two cents.

Ruthie Dolezal

From: willaful@...Date: Wed, 13 Aug 2008 22:39:39 -0700Subject: Re: ( ) Re: Aspergers versus HFA

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=20I've never heard of that. By the actual diagnostic criteria, a childwith AS is not supposed to have had language delay, so that sounds prettyweird. But we used to call my friend's daughter's speech "Rose-lish"because it sounded so much like another language. Perhaps that's thesort of thing he's talking about.My son had more typical speech problems - reversing pronouns, a lotof 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 sonservices 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=20This is exacty why they use PECS and sign language for special needskids. (And also baby signs.) Because not being able to communicateis 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=20My little guy really likes signs too, though the interest comes andgoes. It's one of his favorite things at the moment.Willa

[Guest guest]

I am convinced it is that and NOT anything else; my third child was a planned C and he is NORMAL!!! I knew from birth there was something different but it is NOT autism for sure! They are both AS versus Autistic. They were very blah, good babies and are now pills (and have been since they were 12 months).

Ruthie

From: jrisjs@...Date: Thu, 14 Aug 2008 05:48:25 -0700Subject: RE: ( ) Re: Aspergers versus HFA

No oxygen deficiency,,,,but Ian would come, either. Had to be "suctioned" out. I was also induced with Pitocin. He had breathed in Mecconium, as well.

Hmmm.....

From: BRYAN DOLEZAL <DOLEZAL123msn>Subject: RE: ( ) Re: Aspergers versus HFAAspergers Treatment Date: Wednesday, August 13, 2008, 8:58 PM

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: ginak1117att (DOT) netDate: 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>

[Guest guest]

Ruthie, you are so correct about the battle with the school being over 8+ years and not to mention being diligent with saving every document - every piece of paper }}}}}} every phone call, every meeting minutes, every test paper, every note pasted back & forth. E V E R Y T H I N G... A good attorney that no school in your district ever used, and constantly being exhausted and your child losing out during this long battle. I know two people who fought the school and it consumed all their time. Even though they won, their child still lost out on all those years of fighting. BRYAN DOLEZAL <DOLEZAL123@...> wrote: Jan, they can and will do and ARE doing it, whatever they can to get out of providing the services. That is why we moved, home schooled my 8th grader last year, and our NEW SCHOOL is going to meet his needs ('cuz they know we had lawsuits if we wanted to press against our old school) but we are doing a half day this year with him home schooling half day. All the subjects (main ones) will be done in the school the first four periods of the day. He will go to school 8-10:10 on Wednesdays and 8-11:11 the other four days of the week. I have to pick him up, but the home school assistance program is LITERALLY across the street from his middle school, so I am going to have him walk over there each day, do some of his work, and pick him up by 12 noon (that way, I have a few extra minutes

and he can work over there, quietly and without us bothering him). He is excited, and it will be great for all of us (and that way, he has to do the work). We are excited, and nervous, but after over $10,000 in law bills just last year with our old school, plus our own time, lost work, etc., we decided we would not do this anymore (fighting the school for what they refuse to give us). And, they cannot...........if they agree, they are admitting fault, have to pay, and are open for lawsuits, so they are NOT going to change; that is the truth, the facts, and the way it is. They don't have to do anything or use anything from anyone else, so they won't change, I am here to tell you! Sounds like the battle we spent thousands on. Our attorney has won federal cases in DC and that did not make any difference. He could NOT believe it! PS The battle with the school for lawsuits is an 8-10 year minimum battle,

so that is up to you; by then, I could care a less; this was NOT about the money for us but the education / my son getting what he needs. I had had it, my husband had had it, and we just could not do it any more! All I care about is my kids, so that is my two cents (even though I have not been typing lately!!!!). I AM STILL HERE!!! Ruthie Dolezal From: jrushen Date: Thu, 14 Aug 2008 03:42:07 -0700Subject: RE: ( ) Aspergers versus HFA 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> > > Multisystem Developmental Disorder Page 2> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > >> >>

[Guest guest]

Yes, soooo true, and WE (hubby and me) decided we could not work and do all that, too. And, parent three children, and me run a daycare, etc. It was something else, and just not worth it any more (and we could either parent and love our children, or spend all our income ON the attorney, which we could not do anymore); so, we quit that, put that money away for three months, and moved to a NICE house in a new neighborhood and school, and I started my daycare business here in MARION versus Cedar Rapids, and my husband is now 12-15 minutes from work instead of 5 or less, but it is all worth it, and we are all happier. And, how unfair to kids that all you do is consume your time, evenings, and energy in the fight back and forth; the kids (when they 'age') start to HATE the school, right along with the parents, as they know what is going on; how could they not? Our now 14 year old felt like he was the pawn in the mdidle of tug of war; it was WORSE than if he was sharing his parents in a custodial arrangement or divorce; it was THAT bad, and just not necessary. So, if you love the stress, battle, and fight, remember, it's gone on for years, and not much has changed, you are doing it for your child, not the greater good of mankind at this point. So, if you can get something for your child out of it, then do it over and over and over; we just did not and have that on our 'wrap sheet' now so they are more positive with us now, as they don't want to fight with us (or know they could and will have a lawsuit on their hands if they do). So, that is all that has come of it.

And, paperwork, yep, I have about 20 boxes of stuff in our 'storage' from the ONE CHILD for the past five years. It is insane, unnecessary, and sooooooo crazy. And, at this point, it takes me a couple weeks if YOU want something from one of those boxes but I have everything you can imagine (and then, when getting to that one document, it takes about 100 hours of your time to find that darn piece of paper, so add that to the list of costs)..................

Anyway, good luck, but I would quit the fight, and look in to something more positive for the child, and ensure the child's needs are met, as they won't be in the public school; they can't change their minds now.

Ruthie & Dolezal

From: beachbodytan2002@...Date: Thu, 14 Aug 2008 06:45:58 -0700Subject: RE: ( ) Aspergers versus HFA

Ruthie,

you are so correct about the battle with the school being over 8+ years and not to mention being diligent with saving every document - every piece of paper }}}}}} every phone call, every meeting minutes, every test paper, every note pasted back & forth. E V E R Y T H I N G... A good attorney that no school in your district ever used, and constantly being exhausted and your child losing out during this long battle. I know two people who fought the school and it consumed all their time. Even though they won, their child still lost out on all those years of fighting.

BRYAN DOLEZAL <DOLEZAL123msn> wrote:

Jan, they can and will do and ARE doing it, whatever they can to get out of providing the services. That is why we moved, home schooled my 8th grader last year, and our NEW SCHOOL is going to meet his needs ('cuz they know we had lawsuits if we wanted to press against our old school) but we are doing a half day this year with him home schooling half day. All the subjects (main ones) will be done in the school the first four periods of the day. He will go to school 8-10:10 on Wednesdays and 8-11:11 the other four days of the week. I have to pick him up, but the home school assistance program is LITERALLY across the street from his middle school, so I am going to have him walk over there each day, do some of his work, and pick him up by 12 noon (that way, I have a few extra minutes and he can work over there, quietly and without us bothering him). He is excited, and it will be great for all of us (and that way, he has to do the work). We are excited, and nervous, but after over $10,000 in law bills just last year with our old school, plus our own time, lost work, etc., we decided we would not do this anymore (fighting the school for what they refuse to give us). And, they cannot...........if they agree, they are admitting fault, have to pay, and are open for lawsuits, so they are NOT going to change; that is the truth, the facts, and the way it is. They don't have to do anything or use anything from anyone else, so they won't change, I am here to tell you! Sounds like the battle we spent thousands on. Our attorney has won federal cases in DC and that did not make any difference. He could NOT believe it! PS The battle with the school for lawsuits is an 8-10 year minimum battle, so that is up to you; by then, I could care a less; this was NOT about the money for us but the education / my son getting what he needs. I had had it, my husband had had it, and we just could not do it any more! All I care about is my kids, so that is my two cents (even though I have not been typing lately!!!!). I AM STILL HERE!!! Ruthie Dolezal

From: jrushen Date: Thu, 14 Aug 2008 03:42:07 -0700Subject: RE: ( ) Aspergers versus HFA

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> > > Multisystem Developmental Disorder Page 2> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > >> >>

[Guest guest]

Ruth, they wrote a letter to our doctor stating that they will continue all his services. (they are). the doctor (neurologist) also disagreed with the change of classification but she said to me that the school re-assured her that his services will remain. she wrote back to the school stating that if he regresses or if those services aren't affective anymore, he would have to be changed back to autism. (yeah)? My stomach is in a knot for him with his first year in middle school for this September. I know you understand how hard my son and I worked to get him to where he is now. {{{ I've read many of your post and know you do the same }}} So, for me to see my son do as well as he is and to regress in middle school is just a nightmare for me. I'm praying this doesn't happen. the worst worry is : if there is something hidden behind what they are doing. IMHO, I don't think the school team is like this, I

know these people do care !. in elementary school, they all seemed to love my son and him love them. they just didn't understand his needs until I had to elaborate and get medical notes with strategies. then when we were all on the same page - {{{{{ progress }}}}. I just hate and fear to lose this now and be wrong with my judgment and trusting them.... I'm worried with not knowing whats going to be .... then I tell myself, if the worst happens, I'll just have to do what I've been doing. start searching for outside professionals again and get him the help he needs at home. document it all and just try to advocate the best I can, but meanwhile, he will still be getting that extra help after school from the services I find him.. (which are hard to find). expensive and time consuming .... as you already know !. Roser_woman2 <me2ruth@...> wrote: >> Aspergers, HFA, Classic autism, PDD-NOS are all under the autismspectrum. ... They still want to change him from an autismclassification to OHI but added a medical DX of autism. What sensedoes that make and why ? how does that benefit the school by changingmy son's classification from autism to now OHI ?Rose, you have to distinguish medical dx from school classifications.Also, keep in mind that

they are required to support all your son'sneeds regardless of what label they give him. It sounds to me likeyour state has made a classification change and your school ischanging your son's classification to match the state. In my state,the autism classification includes the entire spectrum, so your sonwould be classified autism. However, some states only put classicautism in autism and put the other spectrum disorders elsewhere. Itsounds like your state has just switched to the first, putting theother spectrum in OHI. Assuming you have asked them why they aredoing this, do any of their answers seem to support this? To makesure they are not doing anything fishy, ask them a lot of hardquestions about how his services may change.Ruth

[Guest guest]

I'm hearing that more and more - " don't worry about the DX, focus on the right services ". even advocates in my state are saying that. IMO makes me wonder if they are trying to change those high statistics of 1 in ever 150 are dxed with autism. just a quick thought ? schools are quick to change the classification from autism to OHI. does that change the statistics ? would that make a difference in funding research for autism ?. (if it changes the statistics and the numbers falsely drop, what message would that give)? but in the past, the DX was important for the right strategy, but without the school knowing the right medical DX, that can be a disadvantage to the child. OHI doesn't explain much because of the wide area that it covers. BRYAN DOLEZAL <DOLEZAL123@...> wrote: It IS called ASPERGER'S. Pronounced: "Ass, PURR, Grrrrrs." It is named after a man with that last name. I don't think there IS a difference between HFA and Autism. I have heard parents of AUTISTIC children with lots of services and improvements tell people their child now has high functioning autism; from my personal and professional experience, the only difference I know between AUTISM AND ASPERGER'S are: Asperger's children develop normally as far as walking, sitting, talking, etc. Where Autistic children often either have a huge delay in

their speech and did not speak until three or four years of age and / or when they do, only repeat what they hear / don't create or can't create their own sentences without your prompting! Also, Asperger's children often potty train delayed but NOT nearly like the autistic child at more like 5-6 years of age. I would contend that the severe speech / talking issue is NOT Asperger's Syndrome but autism, and because of services, the child has improved. Asperger's children often have problems with the meaning until you teach them, so if a word has multiple meanings, until they are taught the other meanings, the only meaning they know is the one they learned, so if four is the number four, when you say, "for" they don't get that. Bad example, but that is one that just 'came to me.' Also, our children with AS often cannot read your expressions and interpret them. I would suggest researching on your own, and discovering the

differences and learning yourself; and I would NOT worry about the diagnose but getting services. And, plan to do it more individually and on your own than depending upon the school; if you wait for MOST (not all) schools, your child will be 14 and have had no services or improvements (like my 14 year year old, now stuck at what he learned in school up until fifth grade, when he was in a different district and go tons of services------------------------------has learned basically nothing since the school failed him); now, we are paying, paying, paying to fix the damage. So, that is my more than two cents. Ruthie Dolezal From: willafularmoryDate: Wed, 13 Aug 2008 22:39:39 -0700Subject: Re: ( ) Re: Aspergers versus HFA 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=20I've never heard of that. By the actual diagnostic criteria, a childwith AS is not supposed to have had language delay, so that sounds prettyweird. But we used to call my friend's daughter's speech "Rose-lish"because it sounded so much like another language. Perhaps that's thesort of thing he's talking about.My son had more typical speech problems - reversing pronouns, a lotof 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 sonservices 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=20This is exacty why they use PECS and sign language for special needskids. (And also baby signs.) Because not being able to communicateis 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=20My little guy really likes signs too, though the interest comes andgoes. It's one of his favorite things at the moment.Willa

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Ruthie, IMO after following all your post, you made a very wise decision with all you have done. including your worries with pulling him out from school to homeschooling, doing all your homework, checking everything out before you did that, to the move and starting over. Sounds like you did good and as hard as all that was for you - including packing - that was still an easier move and less expensive (knowing the expensive with moving) than fighting the school. in the long run, that was worth it. I too gave up a lots - to be in the right school district for my kids.... How do you like your knew home ?. are you all settled yet ? does it feel like home now ?. RoseBRYAN DOLEZAL <DOLEZAL123@...> wrote: Yes, soooo true, and WE (hubby and me) decided we could not work and do all that, too. And, parent three children, and me run a daycare, etc. It was something else, and just not worth it any more (and we could either parent and love our children, or spend all our income ON the attorney, which we could not do anymore); so, we quit that, put that money away for three months, and moved to a NICE house in a new neighborhood and school, and I started my daycare business here in MARION versus Cedar Rapids, and my husband is now 12-15 minutes from work instead of 5 or less, but it is all worth it, and we are all happier. And, how unfair to kids that all you do is consume your time, evenings, and energy in the fight back and

forth; the kids (when they 'age') start to HATE the school, right along with the parents, as they know what is going on; how could they not? Our now 14 year old felt like he was the pawn in the mdidle of tug of war; it was WORSE than if he was sharing his parents in a custodial arrangement or divorce; it was THAT bad, and just not necessary. So, if you love the stress, battle, and fight, remember, it's gone on for years, and not much has changed, you are doing it for your child, not the greater good of mankind at this point. So, if you can get something for your child out of it, then do it over and over and over; we just did not and have that on our 'wrap sheet' now so they are more positive with us now, as they don't want to fight with us (or know they could and will have a lawsuit on their hands if they do). So, that is all that has come of it. And, paperwork, yep, I have about 20 boxes of stuff in our 'storage' from the ONE CHILD for

the past five years. It is insane, unnecessary, and sooooooo crazy. And, at this point, it takes me a couple weeks if YOU want something from one of those boxes but I have everything you can imagine (and then, when getting to that one document, it takes about 100 hours of your time to find that darn piece of paper, so add that to the list of costs).................. Anyway, good luck, but I would quit the fight, and look in to something more positive for the child, and ensure the child's needs are met, as they won't be in the public school; they can't change their minds now. Ruthie & Dolezal From: beachbodytan2002 Date: Thu, 14 Aug 2008 06:45:58 -0700Subject: RE: ( ) Aspergers versus HFA Ruthie, you are so correct about the battle with the school being over 8+ years and not to mention being diligent with saving every document - every piece of paper }}}}}} every phone call, every meeting minutes, every test paper, every note pasted back & forth. E V E R Y T H I N G... A good attorney that no school in your district ever used, and constantly being exhausted and your child losing out during this long battle. I know two people who fought the school and it consumed all their time. Even though they won, their child still lost out on all those years of fighting. BRYAN DOLEZAL <DOLEZAL123msn> wrote: Jan, they can and will do and ARE doing it, whatever they can to get out of providing the services. That is why we moved, home schooled my 8th

grader last year, and our NEW SCHOOL is going to meet his needs ('cuz they know we had lawsuits if we wanted to press against our old school) but we are doing a half day this year with him home schooling half day. All the subjects (main ones) will be done in the school the first four periods of the day. He will go to school 8-10:10 on Wednesdays and 8-11:11 the other four days of the week. I have to pick him up, but the home school assistance program is LITERALLY across the street from his middle school, so I am going to have him walk over there each day, do some of his work, and pick him up by 12 noon (that way, I have a few extra minutes and he can work over there, quietly and without us bothering him). He is excited, and it will be great for all of us (and that way, he has to do the work). We are excited, and nervous, but after over $10,000 in law bills just last year with our old school, plus our own time, lost work, etc., we decided we

would not do this anymore (fighting the school for what they refuse to give us). And, they cannot...........if they agree, they are admitting fault, have to pay, and are open for lawsuits, so they are NOT going to change; that is the truth, the facts, and the way it is. They don't have to do anything or use anything from anyone else, so they won't change, I am here to tell you! Sounds like the battle we spent thousands on. Our attorney has won federal cases in DC and that did not make any difference. He could NOT believe it! PS The battle with the school for lawsuits is an 8-10 year minimum battle, so that is up to you; by then, I could care a less; this was NOT about the money for us but the education / my son getting what he needs. I had had it, my husband had had it, and we just could not do it any more! All I care about is my kids, so that is my two cents (even though I have not been typing

lately!!!!). I AM STILL HERE!!! Ruthie Dolezal From: jrushen Date: Thu, 14 Aug 2008 03:42:07 -0700Subject: RE: ( ) Aspergers versus HFA 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> > > Multisystem Developmental Disorder Page 2> > > Reprinted from dbpeds.org on 8/8/2008. © All rights reserved> > >> >>

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Make a list. You can say to them, "In middle school, kids are required to...(whatever)...and my ds has never shown this skill/mastered this skill/is too slow with this skill....How will he be able to accomplish this? What kind of help will he need to do this? What kind of assistance will be provided to help him?"

It really depends a lot on how your middle school does things. In ours, the kids changed classes for each subject. So will he be able to get around the school and remember his classes without help? My ds did ok with this (I didn't think he would!) but they made him a booklet with photo's of each of his teachers and then a permanent list of his schedule and class numbers to refer to. Still, the first week, they made sure he got where he needed to be. So sometimes even having an aide for a short amount of time to get the routine down is a good idea. My older ds had an aide all the time.

Other things I remember - using locks. He had to be able to open two locks and remember the combo's for each of them. For some kids with AS/HFA, this might be a nightmare. He can sometimes get the locks in advance to practice at home. Some kids can have a key lock if they can't turn a lock due to fine motor problems. Dressing out in PE. This was not a problem for my younger ds but it was a huge problem for my older ds. He would outright refuse to dress out. So they would have him go to PE 5 minutes ahead of schedule so he could dress on his own before the others arrived and ditto getting redressed afterwards.

Another problem I ran into in middle school was teacher awareness. Not every teacher would know my ds's needs. Not every teacher cared to know! Some did, some did not. Communication with every teacher is a must too. Get emails or phone numbers and best times to call. Let them know if remembering assignments is a problem, if chunking large assignments is necessary, etc. Get cooperation even if they role their eyes and tell you he's a big boy now and you should go home. lol. They will say it or think it. But do it anyway.

I can't think of the rest at this moment but you get the gist.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

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

Rosetroyfamilyaol 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 looked� 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

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My guess is that they do not plan to spend much money on services for your ds. So changing his classification makes it look good on paper for them. If they have a child with autism on paper, they have to show that the services are being provided that match that dx. How could they get funding for someone with autism but provide no services to that child? Or provide only speech? It might be causing them problems.

Otherwise, I don't know what the problem could be aside from money. It's usually always money.

Sometimes a person will screw around with you just for her/his own amusement. But in the end, it's money.

I would ask them directly - if we all agree he has a medical dx of autism, then why change his classification? Shouldn't it be the most accurate classification? Autism matches autism. If they say he is not classically autistic, then I would ask to see the exact paperwork detailing what the autism classification requirements are exactly. If he has AS, then he will meet the classification definition. The only "problem" will be in severity of those problems. And that is open to interpretation, IMO, and could be argued.

RoxannaYou're UniqueJust like everyone else...

RE: ( ) Aspergers versus HFA

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

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No, the school does not have to use what the psych decided at all. They have their own list of educationally related dx's to use and the team decides which one fits best.

RoxannaYou're UniqueJust like everyone else...

RE: ( ) Aspergers versus HFA

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.

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Roxanna...these are spot on suggestions for middle school. I too was very worried about Dylan making it to all of his classes, remember his combination for his locker, etc... last year in 6th grade (first year of middle school where we live) but he did just fine. He also had some problems w/ bullying in PE so like your son, they let him arrive 5 minutes early to dress out and go to the gym so he avoided the crowd of boys. He also got to leave PE 5 minutes early at the end to get dressed and go to lunch, again to avoid the boys. I'll probably proactively ask for this to happen this year instead of waiting for problems to creep up.

This year we'll have a SCORES person on campus Mon-Fri who is dedicated to the kids on the spectrum. I think it's like 10 or so on D's campus. I think this should help tremendously and we got this resource b/c of the advocacy of a mom whose son is entering 6th grade this fall. The power of us mamas!

Re: ( ) Aspergers versus HFA

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

Rosetroyfamilyaol (DOT) com 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 (DOT) com> wrote:

>> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and looked� 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

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Ruthie! You are still there!

I'm glad you moved and have a better school. We had to get a lawyer a few times. The first time, after the first two meetings, my lawyer told them all that this was the worst school team she had ever had to deal with. I think she meant for them to be ashamed by of course, I think it just inspired them. lol. They lied constantly and stretched things out into various shapes - ugh. It was a mess.

Yes, it cost a fortune. We did get what we needed in the end, but not before they made us spend a fortune in atty fees first. One day my dh screamed at them all, "I don't care if I have to dig ditches to pay for this. We are not giving up!" Magically, the next meeting went so much better and the games stopped. I think they were at the end of their tricks by then anyway. But I think they also realized we were not going away too. Since we had documentation on our side, it should have been easier to get what our ds needed really. I think we started out too nice. But oh well, hindsight...

RoxannaYou're UniqueJust like everyone else...

( ) 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> > >> >>

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Interesting theory. Could be, hard to tell. I think they want to save money by providing fewer services and that is one way to accomplish that. But I am bitter and think it's always about money. <g>

RoxannaYou're UniqueJust like everyone else...

RE: ( ) Re: Aspergers versus HFA

I'm hearing that more and more - " don't worry about the DX, focus on the right services ". even advocates in my state are saying that. IMO makes me wonder if they are trying to change those high statistics of 1 in ever 150 are dxed with autism. just a quick thought ?

schools are quick to change the classification from autism to OHI. does that change the statistics ? would that make a difference in funding research for autism ?. (if it changes the statistics and the numbers falsely drop, what message would that give)? but in the past, the DX was important for the right strategy, but without the school knowing the right medical DX, that can be a disadvantage to the child. OHI doesn't explain much because of the wide area that it covers.

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What is "scores"? What do they do?

I thought of another thing too - get one person as your contact person. Ideally, this is the person who can navigate any problems. While you want to have contact with all the teachers, if a problem comes up, you want someone who understands his disability and can run interference. Usually this is his sped teacher.

RoxannaYou're UniqueJust like everyone else...

Re: ( ) Aspergers versus HFA

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

Rosetroyfamilyaol (DOT) com 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 (DOT) com> wrote:

>> My son was dx Aspergers Syndrome and on his paperwork they putAutism....and looked� 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

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>>>>Another problem I ran into in middle school was teacher awareness. Not every teacher would know my ds's needs. Not every teacher cared to know! Some did, some did not. Communication with every teacher is a must too. Get emails or phone numbers and best times to call. Let them know if remembering assignments is a problem, if chunking large assignments is necessary, etc. Get cooperation even if they role their eyes and tell you he's a big boy now and you should go home. lol. They will say it or think it. But do it anyway. <<<<< I learned this problem in 5th grade in elementary school. they changed classes in 5th grade to prepare them for middle school. Yes, not every teacher was familiar with my sons needs. I will keep that in mind for the middle

school and keep a close eye on things...I don't even think all the teachers knew my son had an IEP or a DX. live and learn !. Rose Roxanna <madideas@...> wrote: Make a list. You can say to them, "In middle school, kids are required to...(whatever)...and my ds has never shown this

skill/mastered this skill/is too slow with this skill....How will he be able to accomplish this? What kind of help will he need to do this? What kind of assistance will be provided to help him?" It really depends a lot on how your middle school does things. In ours, the kids changed classes for each subject. So will he be able to get around the school and remember his classes without help? My ds did ok with this (I didn't think he would!) but they made him a booklet with photo's of each of his teachers and then a permanent list of his schedule and class numbers to refer to. Still, the first week, they made sure he got where he needed to be. So sometimes even having an aide for a short amount of time to get the routine down is a good idea. My older ds had an aide all the time. Other things I remember - using locks. He had to be able to open two locks and remember the combo's for each of them. For some kids with AS/HFA, this might be a nightmare. He can sometimes get the locks in advance to practice at home. Some kids can have a key lock if they can't turn a lock due to fine motor problems. Dressing out in PE. This was not a problem for my younger ds but it was a huge problem for my older ds. He would outright refuse to dress out. So they would have him go to PE 5 minutes ahead of schedule so he could dress on his own before the others arrived and ditto getting redressed afterwards. Another problem I ran into in middle school was teacher awareness. Not every

teacher would know my ds's needs. Not every teacher cared to know! Some did, some did not. Communication with every teacher is a must too. Get emails or phone numbers and best times to call. Let them know if remembering assignments is a problem, if chunking large assignments is necessary, etc. Get cooperation even if they role their eyes and tell you he's a big boy now and you should go home. lol. They will say it or think it. But do it anyway. I can't think of the rest at this moment but you get the gist. RoxannaYou're UniqueJust like everyone else... Re: ( ) Aspergers versus HFA 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 Rosetroyfamilyaol 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

looked� 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. No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.3/1611 - Release Date: 8/14/2008 6:20 AM

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Roxanna, I was told from everyone with the documentations I have from the professionals that we've seen, that would be a good argument. the doctors said they would support us in a hearing. but then I was asked by advocates and the school, what was I going to argue ? the school said they are going to provide the services he needs and they are. I did ask they why are you changing his classification ? they said because he's not classic autistic, nor does he have meltdowns, and he is progressing. (with outside help too) with that said, I was told I can go to the hearing and fight for the change of classification back to autism. with that said, I still can't see the Hugh importance for the school to make that change when they are providing my son the services. even though money has a lot to do with everything. with my son keeping a classification of autism they can prove where the money is going because

they are giving him the services he needs. the only thing I can think of is, they are planning on stopping his help/support soon....but how can they justify his autism classification from 18 months old (early intervention) to present, and now he can be changed - according to the school system ?.He's still that same child with that same brain....(neurological disorder) yet, still requires the same help...I will be paying very close attention to everything from his first day in school. and when they tell me he's a big boy now and doing well, I'm going to remind them its because of the services are working and if and when you pull them, who will I hold personally responsible for my sons regression ?. Roxanna <madideas@...> wrote: My guess is that they do not plan to spend much money on services for your ds. So changing his classification makes it look good on paper for them. If they have a child with autism on paper, they have to show that the services are being provided that match that dx. How could they get funding for someone with autism but provide no services to that child? Or provide only speech? It might be causing them problems. Otherwise, I don't know what the problem could

be aside from money. It's usually always money. Sometimes a person will screw around with you just for her/his own amusement. But in the end, it's money. I would ask them directly - if we all agree he has a medical dx of autism, then why change his classification? Shouldn't it be the most accurate classification? Autism matches autism. If they say he is not classically autistic, then I would ask to see the exact paperwork detailing what the autism classification requirements are exactly. If he has AS, then he will meet the classification definition. The only "problem" will be in severity of those problems. And that is open to interpretation, IMO, and could be argued. RoxannaYou're UniqueJust like everyone else... RE: ( ) Aspergers versus HFA 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 . No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138

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>

> Ruth, they wrote a letter to our doctor stating that they will

continue all his services. (they are). the doctor (neurologist) also

disagreed with the change of classification but she said to me that

the school re-assured her that his services will remain. she wrote

back to the school stating that if he regresses or if those services

aren't affective anymore, he would have to be changed back to autism.

Have you talked to the school yourself? I wouldn't just rely on the

doctor. You need to make sure they are not moving him from an IEP to

a 504 without your understanding that that is what is going on. I

know different states are different, but autism is a permanent

disability, and if they are moving him out of it because he has

improved and is less severe--I doubt that is lawful. On the other

hand, your doctor may not understand what is going on either and may

be making assumptions. I think you should talk to the school yourself

and ask them if they are doing this because he has become less severe

and/or they think he has different needs/different level of needs now

or because there have been some classification changes with Autism in

your state or school district. Or have you already done this?

My son is going into 8th, so we went through what you are going

through (just starting at new school) last year. In our case it

turned out to be a good change. It's still an ongoing thing, but the

jr high staff are much easier to work with. The school is much better

set up for less severe accommodations.

Ruth

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that's what our school did with us. but I kept fighting them and they said we will keep the medical dx of autism under medical alert but the classification will be OHI.Roxanna <madideas@...> wrote: No, the school does not have to use what the psych decided at all. They have their own list of educationally related dx's to use and the team decides which one fits best. RoxannaYou're UniqueJust like everyone else... RE: ( ) Aspergers versus HFA 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. . No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.3/1611 - Release Date: 8/14/2008 6:20 AM

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I agree, money is the first answer, then what I mentioned in my post would be next. the statistics will drop and so would the fundings = still all about the money....all the way around. * just a thought ?.Roxanna <madideas@...> wrote: Interesting theory. Could be, hard to tell. I think they want to save money by providing fewer services and that is one way to accomplish that. But I am bitter and think it's always about money.

<g> RoxannaYou're UniqueJust like everyone else... RE: ( ) Re: Aspergers versus HFA I'm hearing that more and more - " don't worry about the DX, focus on the right services ". even advocates in my state are saying

that. IMO makes me wonder if they are trying to change those high statistics of 1 in ever 150 are dxed with autism. just a quick thought ? schools are quick to change the classification from autism to OHI. does that change the statistics ? would that make a difference in funding research for autism ?. (if it changes the statistics and the numbers falsely drop, what message would that give)? but in the past, the DX was important for the right strategy, but without the school knowing the right medical DX, that can be a disadvantage to the child. OHI doesn't explain much because of the wide area that it covers. . No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.6.3/1611 - Release Date: 8/14/2008 6:20 AM

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Ruth, you brought up a good point that I didn't think of with the change from IEP to 504. right now, he still has an IEP but I like to keep a few steps ahead of things. At the next meetings, I will be aware to watch for this. Hummm. thanks Ruth "for point this out ". Roser_woman2 <me2ruth@...> wrote: >> Ruth, they wrote a letter to our doctor stating that they willcontinue all his services. (they are). the doctor (neurologist) alsodisagreed with the change of classification but she said to me thatthe school re-assured her that his services will remain. she wroteback to the school stating that if he regresses or if those servicesaren't affective anymore, he would have to be changed back to autism.Have you talked to the school yourself? I wouldn't just rely on thedoctor. You need to make sure they are not moving him from an IEP toa 504 without your understanding that that is what is going on. Iknow different states are different, but autism is a permanentdisability, and if they are moving him out of it because he hasimproved and is less severe--I doubt that is lawful. On the otherhand, your doctor may not understand what is going on either and maybe making

assumptions. I think you should talk to the school yourselfand ask them if they are doing this because he has become less severeand/or they think he has different needs/different level of needs nowor because there have been some classification changes with Autism inyour state or school district. Or have you already done this?My son is going into 8th, so we went through what you are goingthrough (just starting at new school) last year. In our case itturned out to be a good change. It's still an ongoing thing, but thejr high staff are much easier to work with. The school is much betterset up for less severe accommodations.Ruth