World of Difference in PDD-NOS & Autism? | Autism PDD
I think the case worker was more going by stereotype than by reality. Mild cases of autism more often get the label PDD-NOS or Aspergers, so people start thinking mildness is part of the label. It isn't. Just as the others said above, there is a great range of severity within each label.
Here is a link to the topic "Prognosis Resources" on our forum, with links to a few different articles about what factors indicate a good prognosis.
http://www.autism-pdd.net/forum/forum_posts.asp?TID=17877&am p;KW=prognosis+resources
We all have our worries, and we have to set realistic short-term goals, but I think it's best to act on the assumption that the sky is the only limit on our kids' potential. Good luck with everything.
I have two kids, one of each. The PDD-NOS kids looks less effected to me, but I think that this is just my case. Also, the PDD-NOS kid has been diagnosed as autistic by some doctors. My understanding is that there a series of conditions that qualify for PDD. If the kid's symptoms have the right number of matches to lists in the DSM-IV, the then the kid is considered autistic, or some other names (which are rare). It the kid does not fit into one of these classifications, he is considered NOS. (that's why its "not otherwise specified") However, the list does not really take into account severity of the symptoms, and so PDD-NOS is not necessarily less severe than autism, just different.
Even for autism there are different severities, I think that is what I see in my two kids.
I don't know about the prognosis. I thought that they were similar in that one has to look at the severity of the symptoms (such as non-verbal), age, amount of intervention, etc.
Niki,
Thank you for your response. No, it doesn't shock me or make me feel bad. That's what I had thought, myself. I wish she was right, though!
He's diagnosed with PDD-NOS, but I just usually refer to his condition as autism, since few people know what the heck PDD-NOS is.
She does know what it is and according to her, "there's a world of difference in the outlook for PDD versus autism". She said he should do much, much better than a child diagnosed with full-blown autism.
From the books I've read, I've always had the impression that the prognosis was similar for the 2 conditions. What do you think?
There is a range of functioning within each diagnosis. The difference between one diagnosis and another is more in the areas of deficit, but not in the DEGREE of deficit. I am not saying that your PDD-NOS son might not become a fully functioning and skilled adult. He might. But that might also be true for kids who have classic autism. Alternatively, there is a LARGE percentage of people with Asperger's who are completely disabled by their dx. It all depends. If you want to compare the symptoms of these three main PDD's, go to the library and get a copy of the DSM-IV and look up Pervasive Developmental Disorders. All three of these disorder are listed in that category.
That is my understanding too, a person may not meet all the criteria under autism, so he gets the label PDD-NOS, or different criteria gets the label aspergers, but that has nothing to do with the level of deficit. A person with classic autism could be higher functioning than some labeled PDD-NOS or asperger's. Some drs give the label PDD-NOS for the benefit of the parents. My kids have both labels depending on which dr you ask.I agree that there is a prognosis isn't directly correlated to a dx. For a professional to give a prognosis on a child, the professional has to work with that child and give the prognosis based on the child's unique set of skills, defecits and progress.
Up until this summer I got a bunch of vague "with therapy he'll make so much progress" kind of remarks. This summer we did a full private evaluation with a neuropsych. C is 6 now, has a full year of school under his belt, is fully verbal, is progressing nicely across the board and I feel there is enough data now for a professional to have an informed decision. My son's dx is PDD-NOS. He is viewed as mildly affected, though he may present as more affected when stressed. The neuropsych told us that C will likely become indistinguishable from his NT peers as he gets older but that he may always have what she calls an "autistic stress response." When I look at the checklist Norwaymom posted on the other thread, I see C doing all of those things frequently (though still lagging a year or two behind his NT peers).
In our case, I feel the future is bright. But C is 6 1/2 now. Back when he was 3 I never could have made such a statement.
My opinion is whatever the diagnosis, there are obvious delays or quirks that need to be worked on from mild to maybe severe , so if you have a medical dx, whether it says Autism or PDD/NOS get the help while you can and for as long as you can. If it is not invasive ,it won't hurt. Then see what happens down the road to that diagnosis.Mommy to Abby Grace/PDD/NOS
not sure what be bases that on. I have to say that over the last two years
-if anything- my ds appears more impaired. He is making progress but
he is looking more and more different from peers. So I really do not
know what to think anymore.Our son HAD a PDD-NOS diagnosis and I say HAD. He was correctly diagnosed last year with SMS or Smith-Magenis Syndrome. I will say that I have witnessed other parents with SMS kids who were prior PDD/NOS and the like watch their children improve over time. I never thought my child would be as advanced as he is today. I saw these children in May in Washington D.C. (teens I must say so as not to mislead you) actually sitting thru the conference. I was truly enlightened to know that one day my son will also be able to do this. Im not saying every child will do this,but of the 50 or so that were there they were in and out with activities but sitting in here and there without much disruption. I could not believe my eyes.
there are differances if you know what to look for
shell
AUTISM
[The following is from Diagnostic and Statistical Manual of Mental Disorders: DSM IV](I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C)
- (A) qualitative impairment in social interaction, as manifested by at least two of the following:
- 1. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity ( note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )
- 1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
3. stereotyped and repetitive use of language or idiosyncratic language
4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
- 1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
- (A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play
The full diagnostic criteria for the pervasive developmental disorders are
outlined below. As mentioned above, the diagnostic criteria for the autistic
(PDD) disorders are defined by the DSM IV criteria.
I.
Childhood autismA. A total of six (or more) items from (1), (2), and (3), with at least two
from (1), and one each from (2) and (3):
1. Qualitative impairment in social interaction, as manifested
by at least two of the following:
a. marked impairment in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression,
body postures, and gestures to regulate social
interaction.
b. failure to develop peer relationships appropriate to
developmental level
c. a lack of spontaneous seeking to share enjoyment,
interests, or achievements with other people (e.g., by
a lack of showing, bringing, or pointing out objects of
interest)
d. lack of social or emotional reciprocity
2. Qualitative impairments in communication as manifested
by at least one of the following:
a. delay in, or total lack of, the development of spoken
language (not accompanied by an attempt to
compensate through alternative modes of
communication such as gesture or mime)
b. in individuals with adequate speech, marked
impairment in the ability to initiate or sustain a
conversation with others
c. stereotyped and repetitive use of language or
idiosyncratic language
d. lack of varied spontaneous make-believe play or
social imitative play appropriate to developmental
level
3. Restricted, repetitive, and stereotyped patterns of behavior,
interests, and activities, as manifested by at least of one of
the following:
a. encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that is
abnormal either in intensity or focus
b. apparently inflexible adherence to specific,
nonfunctional routines or rituals
c. stereotyped and repetitive motor mannerisms (e.g.
hand or finger flapping or twisting, or complex whole
body movements)
d. persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following
areas, with onset prior to age 3 years: (1) social interaction, (2)
language as used in social communication, or (3) symbolic or
imaginative play.
C. The disturbance is not better accounted for by Rett's disorder or
childhood disintegrative disorder.
II.
Asperger's syndromeA. Qualitative impairment in social interaction, as manifested by at
least two of the following:
1. marked impairment in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression, body
postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to
developmental level
3. a lack of spontaneous seeking to share enjoyment,
interests, or achievements with other people (e.g., by a lack
of showing, bringing, or pointing out objects of interest)
4. lack of social or emotional reciprocity
B. Restricted, repetitive, and stereotyped patterns of behavior,
interests, and activities, as manifested by at least of one of the
following:
1. encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in
intensity or focus
2. apparently inflexible adherence to specific, nonfunctional
routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g. hand or
finger flapping or twisting, or complex whole body
movements)
4. persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social,
occupational, or other important areas of functioning.
D. There is no clinically significant delay in language (e.g., single
words used by age 2 years, communicative phrases used by age 3
years).
E. There is no clinically significant delay in cognitive development or
in the development of age-appropriate self-help skills, adaptive
behavior (other than in social interaction), and curiosity about the
environment in childhood.
F. Criteria are not met for another specific pervasive developmental
disorder or schizophrenia.
III.
Rett's disorderA. All of the following:
1. apparently normal prenatal and perinatal development
2. apparently normal psychomotor development through the
first five months after birth
3. normal head circumference at birth
B. Onset of all of the following after the period of normal
development:
1. deceleration of head growth between ages 5 and 48 months
2. loss of previously acquired purposeful hand skills between
ages 5 and 30 months with the subsequent development of
stereotyped hand movements (e.g., handwringing or
handwashing)
3. loss of social engagement early in the course (although
often social interaction develops later)
4. appearance of poorly coordinated gait or trunk movements
5. severely impaired expressive and receptive language
development with severe psychomotor retardation
IV.
Childhood disintegrative disorderA. Apparently normal development for at least the first two years
after birth as manifested by the presence of age-appropriate verbal
and nonverbal communication, social relationships, play, and
adaptive behavior
B. Clinically significant loss of previously acquired skills (before age
10 years) in at least two of the following areas:
1. expressive or receptive language
2. social skills or adaptive behavior
3. bowel or bladder control
4. play
5. motor skills
C. Abnormalities of functioning in at least two of the following areas:
1. qualitative impairment in social interaction (e.g.,
impairment in nonverbal behaviors, failure to develop peer
relationships, lack of social or emotional reciprocity)
2. qualitative impairments in communication (e.g., delay or
lack of spoken language, inability to initiate or sustain a
conversation, stereotyped and repetitive use of language,
lack of varied make-believe play)
3. restricted, repetitive, and stereotyped patterns of behavior,
interests, and activities, including motor stereotypies and
mannerisms)
D. The disturbance is not better accounted for by another specific
pervasive developmental disorder or by schizophrenia.
V.
PDD NOSThis category should be used when there is a severe and pervasive
impairment in the development of reciprocal social interaction or verbal
and nonverbal communication skills or when stereotyped behavior,
interests, and activities are present but the criteria are not met for a
specific pervasive developmental disorder, schizophrenia, schizotypal
personality disorder, or avoidant personality disorder. For example, this
category includes "atypical autism" – presentations that do not meet the
criteria for autistic disorder because of late age at onset, atypical
symptomatology, or subthreshold symptomatology, or all of these.
Rett's Disorder
Rett's Disorder
is a pervasive developmental disorder that follows a veryspecific progression. Children with this disorder seem to develop normally
for the first six to eight months of life. Parents may notice excess levels of
hand patting, waving, and involuntary movements of the fingers, wrists and
arms. However, these signs are subtle and may go unnoticed. There is a
slowing of normal development and a failure to reach developmental
milestones on time. Particular problems occur with the acquisition of skills
requiring balance such as walking. Head deceleration occurs (the head fails
to grow larger at the proper rate.) Children undergo a rapid deterioration in
behavior including loss of acquired speech, and purposeful use of hands. A
lack of interest in social relationships occurs, and stereotyped behaviors
may develop. The most prominent symptom in Rett's syndrome may be
"hand washing" movements which develop after the ability to move hands
purposefully is lost. These children are generally mentally retarded.
Episodes of screaming or tantrums may occur. Sleep abnormalities and
seizure disorder are present in over half of the children with this disorder.
The lack of interest in social relationships, loss of expressive language and
the development of stereotypes can cause this disorder to be confused with
autism.
While the DSM-IV does not list male sex in the exclusionary criteria, the
existing literature on Rett’s syndrome documents the condition primarily in
girls. The DSM-IV field trial sample included only girls and a recent, very
well executed epidemiological investigation documented a prevalence of 3.8
per 10,000 girls; boys were not included. Since the discovery of the MECP2
gene, responsible for Rett’s, variants of the syndrome have been reported in
males who have mutations of MECP2, with some overlap in the
symptomatology observed in girls (Amir, Van de Veyver, Wan, Tran, Franke,
& Zoghbi, 1999; Schwartzman, Zatz, Vasquez, Gomes, Koiffman, Fridman &
Otto, 1999; Schanen, Kurczynski, Brunelle, Woodcock, Dure, & Percy 1998).
Childhood Disintegrative Disorder (CDD)
Heller's syndrome
, also know as Childhood Disintegrative Disorder (CDD) isanother pervasive developmental disorder. CDD occurs more frequently in boys,
although both boys and girls can be affected. In CDD, children develop
normally in language, social and other skills until between the ages of two and
three. A marked period of regression occurs which may be insidious (over a
period of months) or more rapid (over a period of weeks.) Previously developed
skills are lost, such as bowel and bladder training, language skills
Pervasive Developmental Disorder (PDD)
Pervasive Developmental Disorder (PDD) is a category designated by the
American Psychiatric Association to indicate children with delay or deviance in
their social /language/motor and/or cognitive development. A child may have
delays in social development and delays in one or more of the other categories.
The profiles of children with a PDD can vary tremendously. PDD is not one
disorder but a category that encompasses a wide range of delays of different
magnitude in different domains. Autism is the most severe of the pervasive
developmental disorders. Autism indicates a primary disturbance in the
individual's ability to relate to others. Language delay and cognitive delays are
also common.
PDD-NOS represents Pervasive Developmental Disorder-Not Otherwise
Specified. This is a diagnosis given to a child who exhibits impairment in the
development of reciprocal social interaction, verbal and non-verbal
communication, or when stereotyped behavior or activities are present.
However, the child does not meet the criteria for any specific pervasive
developmental disorder.
TOTALLY different prognosis, diagnosis, and especially future!
PDDNOS and ASPERGERS and HIGH FUNCTIONING AUTISM:
All can be integrated into regular classes, go to college, can marry, have children, communicate, drive, live life.........
Classic autism - much more likely to never be independant, although CAN be -
Interesting...that is very true, and even though I knew this I never really thought of it that way. I remember when Jess was dx'd, they originally said PDD-NOS, then after more testing said autism. I recall the psychologist explaning that she met a different set of criteria and that was the reason for the change. I guess when people talk about autism as a spectrum, I think of it as:
X (autism)-----------------------X (PDD-NOS)-----------------------X(Aspergers)
Which it is, but it tends to convey that autism is most severe and the dx is milder as it gets towards Aspergers. Not so though! Hmmm....good points.
Same with me Fred, an autism diagnosis with no special aide in his kindergarten class. You can still have a severe communication disorder and/or social issues and have it just labeled PPDNOS, just not with sensory issues, etc. The criteria for these diagnoses are too confusing if you ask me. Also, the diagnosis can change apparently as they go through life, worse, better, then worse again, gone maybe. Our autism psychiatrist told us our child may not qualify for the diagnosis in a couple of years but he needs the diagnosis now to get to that point. On the flip side, his deficits could become more apparent as he ages. I agree PPDNOS does sound less threatening though and I was told the same thing about PPDNOS when we were first diagnosed with that when Al was 3.
[QUOTE=Jessiesmomma]Interesting...that is very true, and even though I knew this I never really thought of it that way. I remember when Jess was dx'd, they originally said PDD-NOS, then after more testing said autism. I recall the psychologist explaning that she met a different set of criteria and that was the reason for the change. I guess when people talk about autism as a spectrum, I think of it as:
X (autism)-----------------------X (PDD-NOS)-----------------------X(Aspergers)
Which it is, but it tends to convey that autism is most severe and the dx is milder as it gets towards Aspergers. Not so though! Hmmm....good points.
[/QUOTE]Probably different branches of a tree is closer to the truth.
Fred
For what its worth - I did not think there was anything offensive in your remarks at all - you were just stating your opinion - nothing wrong with that
[QUOTE=camusa]PDD-NOS is a garbage can diagnosis that simply says, "we do not know what is going on with your child right now, but he/she needs services so...here, have this diagnosis."
[/QUOTE]
Exactly. So, whatever led to the PDD-NOS diagnosis may be something fairly severe or it may be simple immaturity or language delay. My only point is that the PDD-NOS bucket might have a larger number of kids who aren't actually autistic and thus have a larger percentage of kids who outgrow their symptoms. I did not say and didn't think that I implied that PDD-NOS has a better prognosis in general or is less severe than autistic disorder, rather, that a higher number of kids with PDD-NOS will outgrow their symptoms because it is more likely (in my opinion), that a kid who's a late bloomer would be dx'd with PDD-NOS rather than autistic disorder.
Anyway, I've been as clear as I can be (and I'm not implying that your comprehension is bad - I concede that I have a hard time expressing myself through writing and that's part of the problem). If you wish to continue to believe that I was trivializing PDD-NOS or trying to elicit sympath for my poor, autistic children, then there is nothing more that I am willing to do to convince you or the people who you are PM-ing about me otherwise.
PDD-NOS is a garbage can diagnosis that simply says, "we do not know what is going on with your child right now, but he/she needs services so...here, have this diagnosis."
[/QUOTE]
Anyway, I've been as clear as I can be (and I'm not implying that your comprehension is bad - I concede that I have a hard time expressing myself through writing and that's part of the problem). If you wish to continue to believe that I was trivializing PDD-NOS or trying to elicit sympath for my poor, autistic children, then there is nothing more that I am willing to do to convince you or your the people who you are PM-ing about me otherwise.
[/QUOTE]
I never said that you were attempting to elicit sympathy or garner attention...for your kids.
Right, the borderline personality thing, I get it.I did not know that this panel was about labeling each others children. Is this what this is all about. I thought this is where we turned to each other. It should not be about who's child is worse off then the other. Abby has PDD/NOS and right now I am still in the process of getting her help , even though she is on the milder end of the spectrum who knows what the future holds for her and how productive her life will be.We all worry, We are all stessed, No judging here.
Mommy to Abby Grace 3yrs old/PDD/NOS
[QUOTE=LACEYONE]I did not know that this panel was about labeling each others children. Is this what this is all about. I thought this is where we turned to each other. It should not be about who's child is worse off then the other. Abby has PDD/NOS and right now I am still in the process of getting her help , even though she is on the milder end of the spectrum who knows what the future holds for her and how productive her life will be.
We all worry, We are all stessed, No judging here.
Mommy to Abby Grace 3yrs old/PDD/NOS[/QUOTE]
You nailed it right on the head lady. Tell us what you are experiencing, but NEVER assume what someone else may or may not be going through.
Thank you for your level-headed response.
[QUOTE=fred] That said, I would guess a PDD-NOS kid has a higher probability of being "simply delayed" than "truly autistic", and thus a high percentage of them might truly grow out of it while kids like mine are clearly wired up differently and will struggle with this disorder throughout life.[/QUOTE]
"Simply delayed?" "Clearly wired up differently and will struggle...throughout life?" Like my PDD-NOS labeled child won't?!
I would like to see the empirical data regarding this that you so often scream for when others make "blanket statements" rather than this throw away comment. Show me the same data that you would scream for when someone starts speaking about vaccines and you tell them that there is no "proof." Please...show me.
You have made your bias towards Allopathic/Western medicine well-known...as well as your negative judgments about alternative medicines (that I believe you basically called bogus medicines that one would have never turned to if not frantic after given a diagnosis)...so please...show me the data because your typical "woe is me" post is simply trivializing the trials and tribulations of those of us who have to deal with the crazy life that PDD-NOS has handed us.
As noted, PDD-NOS simply marks 5 or less of the 12 diagnostic criteria and DOES NOT speak to severity of symptoms.
So, again I ask you to expound upon this unfounded proclamation...show me the numbers for I have not seen them. If you can elucidate upon this then great, but I am guessing not.
PS-A couple of people brought this to my attention via email and PM and they were very upset about it. Just thought you should know.
fred,
Your thesaurus says otherwise. I think you know exactly what you are saying when you say it.
A simple apology for making a statement that screams, "My problem is worse than yours" would have sufficed rather than another...woe is me.
My reply was geared more toward this whole subject to begin with. I don't see why it became a discussion. Leave it to the medical doctors.Mommy to Abby Grace/PDD/NOS
Cam, enough with the mocking and personal attacks. Not sure what the problem is, but give me a break. I didn't mean to offend/insult anyone. I write the way I write and do no use a thesaurus, though I'm well aware that my writing is sub-par, so there really isn't any need to point it out again and again.
My point was that a kid with PDD-NOS, because they do not meet the full picture of autism (i.e. the triad of impairments) has, I'm speculating (no - no studies Cam), might actually have a higher likelihood of not having whatever the underlying genetic/environment/vaccine injury/whatever that we call autism and thus a higher number of these kids might outgrow their symptoms.
I do not consider my children to be more affected than anyone elses. I am fully aware that each diagnosis on the autism spectrum has a range of severity. My thought was simply that, without the full triad of impairments, PDD-NOS kids may have a greater chance of being simply delayed rather than having the underlying autistic disorder (whatever it is).
These are subtle distinctions, I realize, and hard to express and apparently easily misunderstood. I apologize to anyone that I may have offended.
fred,
Your most recent post simply restated what you said the first time...I see no difference. As you well know many PDD-NOS diagnosed kids go on to be diagnosed as further up on the spectrum. PDD-NOS is a garbage can diagnosis that simply says, "we do not know what is going on with your child right now, but he/she needs services so...here, have this diagnosis."
How many adults do you know or have heard of with pdd-nos or hfa or aspergers living in assisted living or homes etc -
where as autism, moderate to severe - almost all cannot be independant ever -
BUT the most important thing is -WE ALL ARE IN PAIN AND HURTING because our children are not what we 'signed up for'.
However, lets be realistic - some on this board already KNOW their children will never ever live independantly or marry or go to college - and it is NOT those who have children with aspergers, hfa or pdd-nos!!!
PDD-NOS is a LESS SEVERE issue than autism, ask ANY doctor specialist or geneticist in the world.
AUTISM (full blown, every criteria or almost every one) is usually not 'grown out of ' or changed much over life - once again, I have asked many specialists on this, but anyone else can, too - they themselves RATE:
Aspergers, HFA, PDDNOS, Autism Mild, Moderate, Severe.
MOST IMPORTANT: lets all bear with each other and carry each others burdens and encoourage each other -
please!
[QUOTE=autumn]How many adults do you know or have heard of with pdd-nos or hfa or aspergers living in assisted living or homes etc -[/quote]
Lots, and lots and lots. And then a whole lot who because of lacking a straight "autism" label, or because of the "high functioning" label appended to it, can't get into service systems they need and end up starving or near-starving on a regular basis, many ending up homeless or in the psychiatric system or living with their parents for a long time.
I have known offline and online hundreds of autistic people who are said to fall into the categories you're describing and the vast majority of them need some kind of assistance of that kind and the vast majority of them can't get it and end up in a number of awful situations as a result. I run a mailing list on the topic of daily living skills, geared specifically for autistic people, and these things crop up all the time among these supposedly "high functioning" adults.
The fact that you see more people with the label of autism specifically, in those places, reflects the fact that assisted living and group homes (not that I'm condoning group homes) are often only available to people with either a straight "autism" diagnosis or an IQ under a certain cutoff. You don't see people in there who don't meet those criteria because the criteria exclude them whether they need the exact same assistance or not.
I have known only a very tiny number of autistic people who live totally without assistance who don't also get caught in an ugly cycle of joblessness, homelessness, psych labels and being stuck in halfway houses and the like, etc. And for some of them that's only because they're young and haven't burned out yet, and many are going to burn out in the future and have nowhere to turn.
[quote]BUT the most important thing is -WE ALL ARE IN PAIN AND HURTING because our children are not what we 'signed up for'.[/quote]
My parents aren't, and they have two autistic children.
[quote]However, lets be realistic - some on this board already KNOW their children will never ever live independantly or marry or go to college - and it is NOT those who have children with aspergers, hfa or pdd-nos!!![/quote]
Tell that to Sue Rubin's parents and then come back to me and talk about your "realism". She did way better in college than I probably ever will, she even graduated. And she grew up with far more pessimistic prognoses than I did. And she's not all that unusual.
[quote]PDD-NOS is a LESS SEVERE issue than autism, ask ANY doctor specialist or geneticist in the world.[/quote]
You're wrong, and you're wrong about the answers that doctors, specialists, and geneticists will give you. The official manuals say otherwise, that's because doctors and specialists wrote the manuals from experience to say otherwise.
[quote]AUTISM (full blown, every criteria or almost every one) is usually not 'grown out of ' or changed much over life[/quote]
Autistic people don't outgrow autism, but autistic people do change a great deal over our lifetimes. (Sometimes to become less severely disabled by standard definitions, sometimes more, sometimes both in different areas.) I have never known an autistic person not to change and I have as I said known a lot of autistic people.
Also, meeting all of the criteria doesn't mean more severe than meeting only some. A person could have a little or a lot of any given criterion. A person could have a little of all of them and be considered by most people extremely high-functioning, and a person could have a lot of fewer of them and be considered by most people lower-functioning.
[quote]- once again, I have asked many specialists on this, but anyone else can, too - they themselves RATE:
Aspergers, HFA, PDDNOS, Autism Mild, Moderate, Severe.[/quote]
Autism and HFA are not separate, by saying that they are you are already betraying biases that don't exist in the actual literature. HFA is considered, by those who believe in it, a form of autism. If you are going to list it, then you should not list "HFA and autism," you should list "HFA and LFA", or "HFA MFA and LFA", but you should not list HFA as separate from autism because all HFA means technically is autism with IQ above 70. (Although some also use it in different manners than that, including some official people.)
I have a hard time believing that the people you have asked about it really knew much about the official categories and their meanings if they considered HFA to be separate from autism, or PDD-NOS to be uniformly "mild".Additionally, I know a fairly respected autism researcher who is not sure whether "mild autism" means "mildly disabled" or actually means "severely disabled". She has said that it's possible that the core traits of autism make a person more capable of navigating things, such that a person who is very autistic might for all anyone knows be "higher functioning" than a person who is only a little bit autistic. She does not believe that HFA and LFA are legitimate categories, but she does believe that autism and AS are legitimate categories, and this is all based on her research in cognitive science on autistic people. There's a lot that isn't known that is paraded around as set-in-stone fact.
[quote]MOST IMPORTANT: lets all bear with each other and carry each others burdens and encoourage each other -
please![/QUOTE]
Agreed, but I'd really appreciate some accuracy thrown in there somewhere, too.I hope we get some physical criteria for diagnosis, and SOON.
Theoretically the three areas of delay or impairment correspond to injuries or damage in different areas of the brain. Theoretically there can also be different degrees of injury or damage to those areas.
So child could have SEVERE PDD-NOS, with impairments to TWO of those areas. Or could have a mild impairment in all three and be HFA.
GOOD GRIEF. None of us (that I know of) is a diagnostician here. I thought we were here to share helpful information, though.
I don't think Fred meant ANY disrespect, or tried to minimize PDD-NOS. I think the recent attacks on his post were unwarranted, particularly because they were not aimed at anyone in particular.I agree with what Autumn posted....my ds has moderate autism, and is much more impaired than any of the HF or aspie, or PDD-NOS children that I have met, and believe me, I've met and spent time with many...
I actually met a woman and her son in the park last week whose 5 year old son was
dx'd with PDD-NOS when he was 2 because he wasn't talking or socializing at age level. They had 2 separate opinions from doctors, started services, etc. Then, during a speech eval, the pathologist noticed that his tongue was basically fused to the bottom of his mouth. They had that flap of skin removed, and within weeks, he began speaking AND socializing. He has since lost the label.
I guess the point is, like Fred stated, is that sometimes PDD-NOS is put out there because they just "can't put their finger" on the speech/social aspect of the issues at hand. Of course, this post isn't intended for anyone's child, because everyone is here because they need support and encouragement.
Let's try to be nice
nakama
[QUOTE=autumn]TOTALLY different prognosis, diagnosis, and especially future![/quote]
TOTALLY wrong, sorry.
[quote]PDDNOS and ASPERGERS and HIGH FUNCTIONING AUTISM:
All can be integrated into regular classes, go to college, can marry, have children, communicate, drive, live life.........[/quote]
Wrong again, that's way too much of a generalization for a whole variety of reasons.[quote]Classic autism - much more likely to never be independant, although CAN be --/QUOTE]
"Classic autism" includes everyone labeled with high-functioning autism, you know. Among other problems here.Please learn what PDD-NOS does and doesn't mean.
I am sorry to be annoying and blunt about it but these generalizations you are giving out really mislead people. It's nothing personal against you (I don't know you too well), but the generalizations are seriously inaccurate.
PDD-NOS does not indicate whether someone is considered mildly, moderately, or severely disabled. At all. That is not part of its definition.
In fact one of its very common uses is in someone too severely disabled to be capable of doing the things required to get an autism diagnosis. Because many of the autism criteria can only be met by being capable of doing certain things or showing certain abilities. Not everyone is.
In the ICD criteria for "atypical autism" (which is their equivalent of PDD-NOS) they spell it out really clearly:
[quote]Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism; it also occurs in individuals with a severe specific developmental disorder of receptive language.[/quote]
I also know people with severe cerebral palsy who have gotten PDD-NOS labels for the same reason. PDD-NOS is the diagnostic code for "some autistic features", and "some autistic features" is often appended to a different diagnosis.
I wrote a very long post called What PDD-NOS officially means. I wrote another very long post called What does Kanner actually mean, historically?
In the second one I mention that there was also a time when "classic autism" or "Kanner autism" referred specifically to people who were considered "high functioning," like the majority of Kanner's original patients (at least prior to most of them ending up warehoused in institutions, which is known to cause bad outcomes for anyone even non-disabled people). They used "autistic PDD" to refer to autistic people who tended to score lower on IQ tests and who would now be called "lower functioning".
Also, inclusion in a regular classroom depends heavily on the way the regular classroom is structured. I have known kids who were barely any different from usual who were in fully segregated classrooms because the district didn't want to deal with them. And I have known kids who were considered severely to profoundly disabled, some with "severe behavior issues" etc, who were in regular classrooms because their districts made the effort. What kind of classroom a person goes to, or for that matter what kind of setting a person lives in, is not a measure of that person's level of impairment in general, it's a combination of who the person is and the preferences of the society they happen to live in.
Or the way one woman in California phrased it, "I have learned over time that the population of people with developmental disabilities inside and outside of our state institutions is identical."
So even if the categories you were using were being used correctly, your descriptions of outcomes would not be correct. And you are not using the categories correctly.
In reality...
People with Asperger's diagnoses may or may not go to college, hold jobs, or live what most people call independently. I have known many adults with that particular label who live or have lived in group homes or larger institutions. (Quite often in the psychiatric system, because their IQs are by definition too high for many places cutoffs for developmental disability. Many people with "chronic schizophrenia" would now be diagnosed with Asperger's, PDD-NOS, or autism, it's the most common misdiagnosis in the psychiatric system.)
The same is true of people with PDD-NOS diagnoses, only there's a whole lot more variation within the diagnosis of PDD-NOS because it's the catch-all for anything that falls outside the other categories.
And the same is true for people with autism diagnoses, whether currently diagnosed as high-functioning and low-functioning . (New research also shows that by the IQ criteria of functioning level, almost no autistic people are classifiable as low-functioning if tested on a different test than the biased ones most people are given.) Also a very broad range of people there.
So there's really no saying, for any of them, and PDD-NOS is possibly the least predictable of any. It's also the least replicable in studies, making the idea that it's "TOTALLY different" from all other forms of autism kind of dubious. If they have a bunch of children on the autism spectrum and have all the same children diagnosed by a bunch of different doctors, PDD-NOS is the diagnosis the doctors will agree on the least because it's so subjective and possible to use it for so many different things (including "lazy doctor" frankly).
GTTO - thank you for your insight.
Okay - point blank... enough of the pissing contest.
I am one of the ones who emailed - not PMed - Cam, regarding Fred’s comments primarily because we have a friendship OFF this board, and both our children carry the diagnosis of PDD-NOS. I do not normally offend easily, but I will admit to being extremely offended by the statements originally made by Fred, but I took my anger OFF the board to a friend in order to gain some clarity before posting.
My son carries the diagnosis of PDD-NOS (moderate severity), not because he “does not meet the full picture of autism, (i.e. the triad of impairments)”, but because he was so borderline on some that his diagnosis may change. To imply that he might “outgrow” his impairments is to belittle where he exists now. The reality is, he may, as all children do as they mature, extinguish or exchange certain stims for others, certain delays for others, and certain full impairments for others. Other “symptoms” and impairments he may never outgrow – it does not alter the fact that he exists, and will continue to exist, on the Autistic Disorder Spectrum. Whether he “outgrows” his current diagnosis and moves into an Asperger’s diagnosis (as has been predicted) is irrelevant. My son is, for all intents and purposes, someone who is neurologically wired differently, and always will be, just as each of my other children are with their own different-abilities.
In response to Autumn’s comments, I also take umbrage: “However, lets be realistic - some on this board already KNOW their children will never ever live independantly or marry or go to college - and it is NOT those who have children with aspergers, hfa or pdd-nos!!!” There are a number of posters on this board whose children carry the PDD-NOS and Asperger’s label that are well aware their children will NEVER do those things. I think the difference that is being subtly overlooked in this rather pointless argument is that of “classical autism” in it’s fullblown state versus the array of other specific disorders on the spectrum. The reality is that each of the disorders listed on the autistic spectrum range from mild to severe within themselves. No one singular disorder ranks higher or lower than any other – just different (and sometimes very mildly) in how it presents.
My offense at these remarks, whether they were intentioned or not, or misconstrued because of poor writing skills or not, is based solely on the fact that it’s bad enough to have people outside this community make light of a neurological difference within our children that completely alters the way in which they view the world, and in which the world views them. For people living within this community, fighting to provide what is best for each of their children within the realm of their own personal possibilities to do so is thoughtless, insensitive and, quite frankly, unconscionable.
No one child is less important than another, and no disorder is less life-altering than another for the parties involved. Can we now move on, please?
good grief!
this is not a contest!
lets just all be nice to each other!
this board has the most 'elitism' and 'cliques' I have ever seen, in 6 years of boards -
and Fred is a kind man, give him a break!
can we just all agree to disagree?
[QUOTE=autumn]
can we just all agree to disagree?
[/QUOTE]
[QUOTE=gtto]Agreed, but I'd really appreciate some accuracy thrown in there somewhere, too.
[/QUOTE]
PS-gtto...I adore you. So concise and exactly what I needed to read. Thank you for your words.
I just think that when blanket statements are made, particularly about people's futures, people ought to be accurate about the content of the statements.
And I see a lot of inaccuracy in certain statements.
What I see is a combination of overestimation and underestimation of autistic people of all sorts, based on a very shallow definition of the labels they get.
I don't think it's fair to say "...will never..." because you never know, even with things a lot more severe than autism ever gets.
I also don't think it's fair to say "...will always...".
Both of those set up unrealistic expectations.
And when the categories being used don't actually correspond to the statements being made about them, someone's got to say something. Not because of a "who's worse off" kind of thing (that's totally pointless to me), but because it's important to know these things about the assorted skills of various people.
I'm in general loath to use 'high functioning' and 'low functioning' because a person has so many skills that I don't think they can all be generalized to be one level. Sue Rubin, who I mentioned before, has far more capability with things like college than I do, but a couple notches less daily living capabilities than I do. (And we've experienced a reverse thing with measured IQ scores as well, hers went up 100 points by adulthood, mine went down 75 points by adulthood.) Is she lower-functioning because she had far more problems in childhood (and a far lower IQ in childhood) than I did and has more trouble moving around and typing than I do, or higher-functioning because of her ability to complete college and her current IQ score? Or is it that there's different abilities in different areas at different times in a person's life?
That's why I don't go in for functioning labels, or for absolute "prognoses" for people's futures. And also why I don't go in for certain kinds of generalizations and find them somewhat dangerous when talking about real human beings.
If you're interested in one such real human being... My Classic Life as an Artist is the website of Larry Bissonnette, who says "Fastening labels on people is like leasing cars with destinations determined beforehand." He was diagnosed as mentally retarded, clinically insane, schizophrenic, and autistic, after being committed to a developmental institution at the age of 8. He was not expected to learn any of the things he's learned or live the sort of life he now lives. (And for anyone who doubts his communication, I've met him, he uses speech to verify his typing, he's definitely real.)
"have known offline and online hundreds of autistic people who are said to fall into the categories you're describing and the vast majority of them need some kind of assistance of that kind and the vast majority of them can't get it and end up in a number of awful situations as a result. I run a mailing list on the topic of daily living skills, geared specifically for autistic people, and these things crop up all the time among these supposedly "high functioning" adults."
I can vouch for this. I would be classed by many "lay people" as high functioning, but that doesn't mean I don't have difficulties and yet because I'm supposed to be high functioning I'm also expected to get by without help. My husband often has to remind me to eat, I haven't had a bath in two weeks (nor a shower either) and all my concentration and energy is directed towards looking after my lads, which means that the minimum I can do to look after myself is shoved into an ever smaller box. I am very lucky in that I do have my husband to give me a hand with things, but that doesn't mean I don't struggle.
[QUOTE=Adamsmom]By the way, I know more than a few NT now adult children living with their parents, drifting from jobs, not able to complete school, etc..So who is to say how ANY child will turn out.[/QUOTE]
Good point.
By the way... diagnoses of me and my brothers:
Me: autism.
Brother 1: AS
Brother 2: no dx
Ages we once and for all moved out on our own:
Me: 19
Brother 1: 25
Brother 2: sometime in his thirties
Not to say that my brother and I didn't struggle, but those are the ages from which we weren't living with our parents anymore. (The other one was always quite good at all those 'adaptive skills', yet was the oldest when he finally moved out. In fact, we moved out in reverse order of actual daily living skills.)
Edited to add: I mean order according to age. In chronological order, brother 1 moved out first, I moved out second, brother 2 moved out last. But by age it's the way it was above. We're far apart in age so there's no comparison there.
I set no limits on my 2 children with ASD, and don't predict what they will be like in 1 year or 12.
My son was originally diagnosed as having Aspergers at 3 years old by a paediatrician. At 4 years old we were told it was autism. Then his sister was thought to be mildly autistic at 3 and is now more obviously affected at 6 years old than her brother.
My son has more language than his sister but is also more anxious. My daughter has great gross and fine motor skills. My son can use the computer, play piano key board and read music, has taught himself to read and can do a little arithmetic. One is toilet trained, one isnt. One never gives up, the other cries easily. One never stops talking, the other uses PECs and is learning to use a techtalk board to communicate.
They are both autistic and so very different in their abillities, interests and sensory issues and stims. Just like every child is different.
Every day they amaze me with their achievements, their strengths. As parents, Mark and I work to develop their strengths as well as help them with what they can't do and need to learn. Noone can predict their lives for them and who would want to? I refuse to let a label limit the lives of my children. If they do need assisted living as adults I don't see that as a failure. All I wish for my children is that they grow up to be happy, well adjusted, fulfilled adults.
Can we finish with the "you said, he said, she said, I said" line this topic seems to have taken? Because really it's going nowhere now and really never mind about "lets all be nice"- its just plain boring and people are getting hurt. Liz
Yeah my brother and I are also very different.And also my brother looked, to a casual observer, more 'autistic' in many stereotypes earlier in life and less in many stereotypes later in life than I do, and we're really very different and can't even be compared in that simplistic a way, so I agree about people being very different.
At the risk of starting something all over, I would like to say many of the people posting of prognosis have very young ch