Actually, Here in Pennsylvania I did not get very far at all with either of those. On Abby's report it read PDD/NOS-mild Autism. I know alot people here consider them different. But my point is, My insurance company which is Personal Choice does not cover under the dx Autism or PDD/NOS , so in some of her therapies like social skills groups or O.T. etc.. they had to put down anxiety and ADHD. As far as E.I. goes it takes just as long to get services with or without a diagnosis of any sort here in Philadelphia. Also, you don't need an actual diagnosis to get services from Early Intervention.
Mommy to Abby Grace 3yrs old PDD/NOS
[QUOTE=LACEYONE] On Abby's report it read PDD/NOS-mild Autism. I know alot people here consider them different. But my point is, My insurance company which is Personal Choice does not cover under the dx Autism or PDD/NOS , so in some of her therapies like social skills groups or O.T. etc.. they had to put down anxiety and ADHD. As far as E.I. goes it takes just as long to get services with or without a diagnosis of any sort here in Philadelphia. Also, you don't need an actual diagnosis to get services from Early Intervention.
Mommy to Abby Grace 3yrs old PDD/NOS[/QUOTE]
Good morning lady. Just as a note...there is a difference between the two diagnoses. The NIMH specifically states that PDD-NOS is not to be considered as "mild autism" though I know that often I use that term to explain it to people who ask that I know really don't care to understand the nuances.
As for not needing a diagnosis to receive services from EI-You may not need an official diagnosis to get birth to three services (though you do need an assessment here in CT and certain areas of delay must be marked by certain scores) you DO need a diagnosis to receive those services once your babe turns three and will be accessing the public school system resources.
Actually, a child can have 6 or more of the symptoms for PDD-NOS - it is the severity of the symptom that is important as well. But, in order to meet that criteria you have to have the severity - so camusa you are technically correct. I just didn't want anyone to get confused.
We have a PDD-NOS diagnosis and haven't had any issue getting the help my ds has needed. However, it sounds like your school district is awful.
Tzoya has always recommended the book "From Emotions to Advocacy" and it sounds like a good book for you to read. Services should in NO WAY stop when your child turns 3! The public school is required to give him services that he needs - or you can do several things. Ask for an independent educational evaluation (so that an outsider can say what your son's needs are), go to mediation, and go to due process (which is like court). This will take a lot of energy on your part, but you best be prepared unless you are willing to move to a more autism-friendly school district. You don't have to start adverserial, but if they are telling you "no services" or minimal ones - then you have to fight.
I'm sorry this is going on. A two-year wait list is criminal, in my opinion. I'm glad you're hopefully going to get a diagnosis sooner than that! What services is your son getting right now that you feel won't continue once he turns 3?
Hi there,
There have been many posts on this and some quite recent, but the long and the short are as follows:
In order to be diagnosed with "autism" one must have 6 of the 12 criteria of autism.
In order to receive a diagnosis of "PDD-NOS" one may only have 5 or less.
Speech, social, and inflexibility/Rigidity are some of the big categories and I believe that even in persons labeled "autistic" they must have a certain number in each bucket.
My son is PDD-NOS and he has what has been referred to here as the "triad" of symptoms...that is to say...he has symptoms that span the big three categories, but perhaps they are not severe enough at this time or there are not the "correct number" in the "correct categories" to be labeled "autistic." PDD-NOS requires that the schools respond with services...it is a "spectrum diagnosis."
No matter...he is, as I have stated in the past and for me that is all that matters. My most beautiful son.
As for your EI service (EI=Early Intervention) when your babe turns three your battle will begin with the public schools rather than your "Birth to Three" type program. USE YOUR EI PEOPLE AS ADVOCATES. Bring your early intervention persons to your Treatment planning and let them report some of the findings. If your child is on the spectrum in ANY way you are due services and you will have to fight for exactly the services you believe your child needs.
Educate the hell out of yourself. As a friend of mine on here has noted...the schools don't like educated parents (educated in this realm anyway) and are less likely to say, "no" when you know the laws.
Look up Wright's law and the IDEA (2004) and begin your new studies.
Best of luck and post as many questions as you need answers (and search for some too).
PS-welcome to the board
You know what I would do, I would talk to the dr and say look, a PDD-NOS diagnosis is going to get me no therapies, and I have accepted it so don't call him PDD-NOS on my account, can we call it autism so he can get what he needs? The doctors actually pretty much told me this, I could call it PDDNOS but he'll get nothing, so I'm calling it autism. I didn't have to say a word. Be honest. My boys have always made eye contact and interacted and he still gave them the autism diagnosis so I can get the insurance to pay for ABA.Thanks. I am in NC and the Teacch program is who makes the diagnosis. Since it is a 2 year waiting list to get a diagnosis, my early intervention coordinator got a Psychologist on their staff to do it. They are using the cars test. I'm not sure if I can talk Early intervention into that but I sure hope so.
I am really stressing about all this because all his therapies will stop when he turns 3!
He will then be in the public school system and they don't give hardly anything. Our insurance doesn't cover anything and we can't afford it ourselves.
chill cam!
no one is pissing anyone!
even the Dali would tell you let each express himself as he will, to go forth with the knowledge they have recieved, and to agree to disagree!
sorry you cannot let us all post our opinions, even those of us with trained scholarly opinions.
deleting my posts is an exertion of your authority that is very selective and cliquish, and i see you are enjoying it already, mere moments after being given that privelege. gosh, that is sad.
happy to leave this board, no help here, that is for certain, unless you kiss up to the right folk and state your posts in a way that the high moderators approve of!
autumn,
Ending your sentences with a smiley face does not mean that they are well-intended, in fact, in this case, just the opposite.
Anyone reading this thread can see what is going on here and you looking up a quote to bait me will not help.
This thread was created by a person who asked for help and continued to try and help someone with a question they had...not to ask which diagnosis is the "worst."
We do not need a repeat thread re: PDD vs. Autism.
got my info in school! the autism dx can be hfa. phd on the way. pddnos not as severe, meet much less criteria than autism. i know it varies and it is a spectrum :)When did this become a contest to see who has the child with the most "difficult" diagnosis?
There is no "better" or "worse" when it comes to diagnosing autism or PDD-NOS.
Amanda (gtto) could explain this far better than I, but as has already been explicated there are differing degrees of severity.
Autism can show severe expression of affect and symptoms as can PDD-NOS.
We will not have another pissing match about this.
We all have our trials and tribulations to deal with and NO ONE PERSON will trivialize another's on this board as I see happening here.
If that is the type diatribe you wish to engage in I suggest you look at some of the old pissing matches (quite recent and involving some of the same characters) and sate your thirst there or take it off board.
If this thread continues as such it will be closed.
Hey there - you are quite mistaken when you say PDD is a WORSE diagnosis than autism! AUTISM is a worse diagnosis by far! Read the DSM IV TR - it will explain all - dx in order of LEAST to MOST serious are:
aspergers
high functioning autism
pdd
autism mild
autism moderate
autism severe
autumn,
Where did you get your info - because from what I understand there is no diagnosis entitled high-functioning autism. The DSM has 5 categories: PDD-NOS, Asperger's, autism, Rett's syndrome and Childhood Disintegrative Disorder.
PDD-NOS is neither worse nor better than autism - it depends on the child, their level of severity and also the doctor diagnosing. It varies so much and that is why it is a spectrum!
autumn:
I think she meant that with an autism dx you may qualify for more services than with PDD.
Just got around to reading some of this thread. I want to clarify that there are TWO sources for "naming" ASD's:
The first is medical. That is called a diagnosis. It is determined CLINICALLY, not MEDICALLY and it is one of 5 Pervasive Developmental Disorders. In other words, there is not blood test or genetic test for any PDD, just an educated opinion, given by a physician, that the child qualifies for one of the 5 diagnoses under Pervasive Developmental Disorders in the DSM-IV, the medical manual published by the American Psychological Association. These 5 diagnoses are: Autism, Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS), Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. The last two of these are extraordinarily rare, so doctors mostly concern themselves with diagnosing the first 3. If you want to read the criteria for one versus another, get your hands on a copy of the DSM-IV and read them under Pervasive Developmental Disorders.
The second is educational. This is NOT a diagnosis but an evaluation. Each state has a definition of what needs to exist for a child to be classified under Autism, educationally, but ALL the 5 medical PDD's qualify. However, a child DOES NOT NEED TO HAVE A MEDICAL DIAGNOSIS TO QUALIFY, EDUCATIONALLY, UNDER AUTISM. Schools cannot diagnose and cannot, technically, require a diagnosis, although a diagnosis from a doctor can expedite matters. You can google IDEA 2004, look under "definitions" and find the definition of autism or you can locate your state regs and do the same.
Functioning levels vary within each diagnosis. Each child brings different strengths and needs with him and those individual innate skills and abilities have a definite affect on the prognosis. Also, it's very, very difficult to guess about where a child will end up before school age and it's pretty difficult even then until well into the teen years. Many very, very good autism experts outright refuse to give a medical diagnosis until a child is at least in kindergarten, though some feel intense pressure to do so for IEP reasons. That is why it's probably good to get an update on the child's diagnosis after kindergarten, since THAT diagnosis will probably be more accurate.
tzoya - In Minnesota, the schools give a "classification" and they do not have to take the medical diagnosis into consideration. They can, but don't have to. If they don't feel your child meets the criteria - even if s/he has a medical diagnosis - your child does not get services. Of course, then it is fully within the parents' rights to ask for an IEE (independent educational evaluation) and they most likely would get one, especially if the child has a diagnosis.
Educational classification varies SO much by state - even by county and/or school district!
Thanks for clarifying that.
By the way, Rett's may not be quite as rare as was once thought. I know several adult women diagnosed only after genetic testing became available, because they looked like they had "regressive autism" or "mental retardation" as a child with a small head and some amount of hand-wringing or similar things, but not severe Rett's. In other words, there are milder variants of Rett's that pass as other things.OK - I was debating about going anywhere near this debate, but I'd like to share my thoughts.
Can't we all try to be kind to one another and when we see a post that offends us, to try and give the other person the benefit of the doubt? And show respect for others POV even if it is very different than ours? Assume the best of intentions?
IMHO, the heart of the dx debate is the fact that we all love our kids and we're all worried about the future and none of us knows for sure what the future will bring. Since we don't know the PROGnosis, we get hung up on the DIAGnosis, hoping that having a particular dx will help us better be able to predict what our children's lives will look like in the future.
Participating on this board and reading the rich and diverse experiences that are shared, has helped me to see that there is no crystal ball. From what I've read here, diagnosis and prognosis are two completely different things. The spectrum is so wide that generalizations are often not sensible. I'm no longer as concerned with dx as I once was. I used to be relieved that my son was PDD-NOS and not autistic disorder because I was hoping that meeting less criteria for autism = less affected = better prognosis for future. Now I feel very differently, and I have this wonderful online community to thank for that evolution of my thought process on this matter.
Now I simply tell people that C has autism. When I get comments like "I never would have guessed" or "it must be pretty mild" I just tell people that he was much more severely affected when he was younger, but he's been in therapy since he was 2 and has made great progress and we feel really good about how he's doing right now. I've stopped using the term "high functioning" after reading some prior posts by gtto on that subject. I've stopped explaining PDD-NOS, because IMHO, I don't think it really matters.
C is PDD-NOS because he didn't meet all of the criteria for autistic disorder. I'm no longer concerned with HOW MANY items the doctor could check off a diagnostic list. What I care about is WHICH criteria for autism he DID meet, and how I get him the best interventions possible to address those particular defecits.
That's just my opinion, for what it's worth. Thanks for listening. I really should go to bed now!
I have totally held off until this point jumping into this debate, by I truly can no longer sit on the sidelines. What I take umbrage with is this whole idea of folks getting all upset about not being able to state their opinions, when in reality these opinions are stated as FACT in their posts. I for one am all for being able to state an opinion.....isn't that the purpose of free speech and part of how we all learn. However, let's be clear about this when doing so.
This is not the first time we've received a list of "worst to best" in terms of severity. For those of us who have been around for a long time, we know to simply "take it with a grain of salt". However, there are a lot of new members here who may take it otherwise. The previous thread on this topic has already covered this ground, and the posts by GTTO in particular did an excellent job of explaining the differentiation or lack thereof between the diagnosis.
I know I probably shouldn't have gotten involved, but I just hate for those who haven't been around to hear all the previous debate on this issue to be mislead.
My son has a diagnosis of autism....plain and simple. However, he's by far less affected than many of the PDD-NOS or Aspergers kids I know. So, I'm sorry, but based on my personal experience, a diagnosis of autism isn't always the worst....tell that to my son who is now in a mainstream Kindergarten without an aide, and doing wonderfully by the way.
Where I live, IL, ASD is ASD from a services perspective. Autism vs. PDD-NOS doesn't matter one bit. At C's 6 year reeval they told us that C would qualify for services under the disability category of "autism." However, they qualified this with "we call this educational autism" because a school can't officially dx autism, only a medical professional will. I asked, would it change anything if we had a medical dx and they said no, he's going to get all of the services he needs regardless. (Prior to age 6, my son qualifed for services under a general "developmental delay" label. However anyone with this label needs to go through a full evaluation again by age 6 and assigned a new label for services.)
Of course I then had a private neuropsych do a full eval this summer just to get the medical dx anyway and it came back PDD-NOS. I shared the neuropsych report with the school and they were very happy to have the information. Noone seemed remotely concerned that the dx was PDD-NOS - it's all autism as far as our school is concerned.
I'm sorry I ever got into this - I just don't want people who are new to the board to get confused by misleading information. There is a wealth of information about diagnosis, treatments, etc. in the "For Newbies" thread that is 3rd down in the second setion on the 1st page (it stays there permanently). Anyone who has any questions can look at that and get accurate info.
Not that I want to discourage anyone from asking questions - but as someone else said - let's state opinions as opinions and only state things as facts when you have something that backs it up scientifically. I'm all for opinions - just not when they are presented as fact. And, I apologize profusely if I came across as doing so - that is not my intent!
Kristy - well stated as usual! But, my ds has always been on the border of the spectrum and although we've gotten him lots of therapies and help - that is really where he still is. I don't like the term high-functioning, but I often use it to people who don't know a lot about autism because otherwise they don't at all understand that my ds has it. I guess it's a way of making me and them feel better about it.
Anyway, I'm done with this (I believe I said that before). I'm sorry if there were hurt feelings and especially if I caused them.
Thank you to the Senior Members that took the time to chime in and be encouraging.
I am hoping that this was not to traumatic to mountainflower and that she will come back here for information...both to share and request such.
There was one post deleted from this thread in order to preserve some semblance of community and goodwill, but leaving it open seemed important as there was a question asked by a newcomer and we ALL know what it felt like to be a newcomer eh?
It can be confusing, frustrating, really tough! It still is at times for me and I am no longer a newbie.
Let's try and make sure that when someone comes a knockin'...we answer with a smile and give them what they need and if we have our own personal agendas...we take it to its own thread. OK?
Much love to all.
I think there is no need for such kind of talk on the board. I have no desire to get into a war of words. I have my MSW and went to school for years as well, in addition to having lots of practical experience in doing in-home family therapy. Please look in the DSM and you will not find the categories listed above. This is read by people new to the board and it will only confuse them by putting additional, misleading categories. I know kids who have a diagnosis of PDD-NOS who are affected much more severely than some kids I know who have a diagnosis of autism. Doctors vary in their diagnoses. In addition, each category is a spectrum and there are children that are impacted mildly, moderately or severely in each category I listed.
Thanks cam for stepping in - in my opinion this is getting out of hand. I don't think closing the topic would at all be out of line.
Thanks tzoya - I wasn't aware that if your child had a medical dx that s/he would automatically qualify to get a 504. That wasn't explained to me AT ALL at ds' initial eval. Hmmmm.... But, a 504 won't get you much and certainly not enough to help.
But, it helps to know all these little intricacies.
Let me clarify. A school district determines whether or not a child gets an IEP based on TWO decisions (and this applies in Minnesota as it does in ALL states):
1. Does the child have a disability? A disability is legally defined as an issue that interferes with one or more MAJOR life activities. In order to GET a medical diagnosis of one of the PDD's (aka, an ASD) 2 major life activities, social interaction and communication, MUST be impaired to some degree. So ANY medical diagnosis of a PDD/ASD is considered, legally, a disability. This results in the ability to get a 504 plan in school. To go further and get an IEP, the following must also exist:
2. The child's disability MUST interfere with educational progress. IDEA 2004 defines this to mean that the disability has a measurable negative effect on academics, functional skills or behavior to the extent that progress toward meeting age level/grade level standards is impaired. BTW, social interaction qualifies under both functional and behavioral.
Of course, there is A LOT of room for debate in area #2, which is where the decision of IEP or no IEP occurs. Area #1 qualifies as a disability for the purpose of getting a 504 plan, which affords any student with a legal disability accomodations and modifications, tho not necessarily much more than that and definitely fewer procedural safeguards than an IEP. For an IEP to be given, the child must qualify under both #1 and #2.
To simplify, a medical dx = a 504 plan, an educational classification = an IEP (which includes the protections of 504). You can look up any of these terms at www.wrightslaw.com and get further info.