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ppd-nos dx criteria

Screech, Some children with autism have other disorders that can (and often do) include metal retardation,  but, just because a child is autistic, does NOT mean they are not smart!!!!!!!!!!!!!!!!!!! If you read the DSMiV guidelines, no where does it say that a child is dx with one of the spectrum disorders because they are not smart- it identifies the specific areas that are to be assessed, inorder to consider a spectrum disorder.

IS your son diagnosied? If not, you need to get him assessed right away- not guess at exactly what is problem is, he may not even have a spectrum disorder at all. What ever his diagnosis, he (like all the rest of the children pictured on this board) is a sweetie and deserves that his problems and issues be properly identified, by someone trained to perform the assessment and that he have a proper diagnosis and treatments and supports to help him be the very best he cn be!!!!!!

Just my thoughts and strictly my ownopinion.

 

http://www.familypractice.com/references/referencesframe.htm ?main=/references/ABFPGuides/Child/child.htm?PHPSESSID=333c9 1b25da6faa20560116f04aa1051

 

If you are like me, and dont have any idea of what is NT and what is not, this is a good site to read about the things your child should be able to do. Like my son should be able to ride his trike, we boutght 3 different kinds and he simply cannot master them and he shows no intrest whatsoever in the concept of it being fun

Thanks Jean, this is helpful.
I KNOW AJ is smart, however, he can't convey it.  What I just read from THAT link, is telling me my son is worse than I anticipated.  Cry

CUTTING THROUGH  THE PSYCHOBABBLE:

DIAGNOSING AUTISM AND PDD-NOS PER THE DSM-IV IN LAYMAN’S TERMS

 This document was born out of confusion experienced by so many parents about the diagnosis of autism or PDD-NOS.  When comparing notes, we discovered that even our physicians did not agree.  One woman told us her psychologist said that a diagnosis of PDD-NOS was reserved for children on the spectrum who are curable; others have been told that PDD-NOS is not even on the spectrum!  We found that many clinicians seem to take a milder diagnosis and simply label it PDD-NOS.

This document takes the DSM-IV criteria for autism and PDD-NOS and translates it into English.  It also attempts to clarify how a diagnosis of PDD-NOS is made.  Please note that not all symptoms may not be present every day.  Look at typically developing children of same age (peers) and use them as markers.  This document is certainly not a diagnostic tool; it was created by and for parents.

To make this easy, (1), (2), (3) are categories, the letters (a), (b); etc that appear under each category will be referred to as symptoms.

DSM-IV Criteria for Autism

299.00 Autism

A.      To be diagnosed with autism, you must have:

o        At least SIX (6) of the below symptoms from categories (1), (2) and (3). 

o        You must have TWO (2) symptoms from (1- Social)

o        And ONE (1) each from (2- Communication) and (3 Behaviors and Interests)

o        The other one (or more) can be from any of the categories.

(1) SOCIAL

Social interaction is impaired, must have TWO from below list of symptoms:

(a)  Problems with nonverbal behaviors such as eye contact, facial expression, body postures and gestures used in social situations

Examples:

o        Eye contact – different from peers, may only meet eye-gaze of certain people or have total lack of eye contact – or anything in between

o        Facial expression – may seem inappropriate to what the situation warrants, may have blank gaze, may not greet you with a smile, may have same expression on face most of time – or any combination thereof

o        Body Postures – may hold arms close to sides, may try to avoid certain types of social contact, may appear unapproachable due to posture

o        Gestures – may not respond to a hand held out to shake hands, arms out for hugs etc.  May not understand social ‘cues’ we take for granted

(b)  Does not make friends like other children in same age group.

Examples:

o        While peers are learning to play together, the child is off by themselves

o        Children learn to play by imitation, this child is not imitating the other kids

o        Seems to have no interesting in socializing with peers

o        May approach peers, but not to play…watch and see if the child is approaching in the same way peers approach each other

 (c)   Does not share objects with others for enjoyment.

Examples:

o        Does not bring you something that interests them to share with you

o        Does not point in the distance (i.e. to an airplane) to share with you something that interests them

o        Look at peers and how they show things they are proud of (ie. Artwork) and see if child does the same thing

(d)    Lack of social (Consisting in dealings or communications with others) and emotional (characterized by emotion) ‘give and take’; Does not respond to social or emotional cues

Examples:

o      Does not seem to seek out or enjoy the company of others; may be aloof

o      Does not smile back when you smile at him/her (without prompting)

o      Does not reply “hello” to your greeting (without prompting)

o      Does not seem especially happy to see you when you return home after work

o      Does not seem to pick up on the ‘vibes’ of others

o      Does not become grateful or excited in anticipation of outing or gift (in the same way a peer would)

o      Does not attempt to comfort someone who is crying

(2) COMMUNICATION

Communication difficulties (Must have at least ONE of the below symptoms):

(a)  Delay in, or total lack of, speech, but does not use gestures to communicate (Delay = not at same level as peers)

Example:

o        Does not point to what s/he wants

o        Does not ‘mime’ his/her needs (ie. Mime ‘eating’ if hungry)

o        Does not shake or nod head for ‘no’ or ‘yes’

o        Does not shrug shoulders to show s/he ‘doesn’t know’

(b) If child can speak, cannot start or hold up their end of a conversation (appropriately)

(c) May echo phrases, words, songs, parts of movies etc.

(d) Does not engage in imaginative play (as peers)

Examples:

o        Will not pretend to drink from toy teacup

o        Will not pretend to brush doll’s hair

o        Will not use items for make belief (i.e. a stick for a cane or a magic wand)

o        Will not make dolls ‘talk’ to each other

o        Will not take a toy airplane and ‘fly’ it around the room while saying ‘zoom’

(3) BEHAVIORS AND INTERESTS

Repetitive behaviors, interests, and activities – child may get angry if this ‘pattern’ is interrupted.  Must have at least ONE of the below symptoms:

(a) Child is so focused on an interest that to remove the interest will result in a meltdown

(b) Routines or rituals must be followed, they appear to have no function

Examples:

o      Lining up cars is not necessarily playing ‘garage’; if you attempt to join in, the child will tantrum, walk away, push you aside, etc.

o      Family members must always sit in same seats; failure may result in tantrum

o      Must take same route home; one deviation may cause meltdown

o      Must wear red shirt on Tuesday or risk a tantrum etc

o      If you go to the video store, you must rent “The Brave Little Toaster” every time or risk a tantrum

(c) Repetitive behavior such as hand flapping, rocking, ear flicking, chewing on clothing, vocal ‘stims’, spinning etc. Establish if this is self-stimulatory by doing a functional assessment like the Durand Motivational Assessment Scale: http://www.monacoassociates.com/mas/MAS.html

(d) Preoccupied with parts of objects

Examples:

o      Spins wheels of toy cars

o      Focus on one part of a toy (i.e. doll’s eyes)

o      Cover parts of book so that s/he can look at one piece

B. Child is either delayed (not same ‘age’ as peers) or acts differently from peers in ONE of the following (must be noticeable before age three): (1) social interaction, (2) language as used in social communication, or (3) pretend play.

C. Child does NOT have Rett’s or Childhood Disintegrative Disorder

299.80 Pervasive Developmental Disorder, Not Otherwise Specified

PDD-NOS is a diagnosis by exclusion.  If a child presents with some symptoms from (1), (2), and/or (3), and their pattern of symptoms is not better described by one of the other PDD diagnoses (i.e., Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, or Childhood Disintegrative disorder) then a professional might decide that a diagnoses of PDD-NOS is warranted.

When comparing PDD-NOS to Autism, PDD-NOS is used when a child has symptoms of autism as above, but not in the configuration needed for an autism diagnosis.  Social component is where the most impairment is seen.  Children who fail to meet criteria for autism and don’t have adequate social impairment typically have a developmental disability, and their symptoms can by accounted for by that.

 Looking at above description:
“299.00 Autism - To be diagnosed with autism, you must have at least 6 of the below symptoms from (1), (2) and (3).  You must have two symptoms from (1) and one each from (2) and (3) – the other two can be any of the other symptoms.”

PDD-NOS is most often diagnosed when children have significant social impairments, but don’t have the symptoms in area (3).  A child with PDD-NOS may have the same (or more, or less) number of symptoms as a child with autism, but instead of having 2 from #1 and one each from #2, the child might have 1 symptom from #1 and one from #2, plus two from #3.

A diagnosis of PDD-NOS is not necessarily a less-severe one than a diagnosis of autism, but can be sometimes.

Severity of any spectrum disorder can be determined by the amount and severity of symptoms listed above. 

It is imperative to obtain a thorough psychological assessment performed.  If you do not understand during any part of the assessment, ask questions.  You should feel comfortable to go home and ‘digest’ the information given to you, form any questions or concerns and contact the diagnosing clinician to get your answers.

Many thanks go out to R.C. for her help with this project!

 

A notice to our readers...

This document was put together with input from parents, not physicians.  It is not to be used as a diagnostic tool, nor is it to be considered professional advice.

This document references web sites that may be of interest to the reader.  BBB Autism Support Network makes no presentation or warranty with respect to the accuracy or completeness of the information contained on any of these web sites, and specifically disclaims any liability for any information contained on, or omissions from, them.  Reference to these web sites herein shall not be construed to be an endorsement of them or of the information contained thereon, by BBB Autism Support Network.

 

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Nope - I'm still alive and kickin'!   I didn't think it was boring at all. In fact, it's very interesting.  We go for a 6 month "follow up" with our ped neuro in 2 weeks.  So this gives me some talking points and ideas.  We also have our "findings" visit with the new developmental ped. tomorrow (the last in a 3 part series).  I know we probably won't hear much of anything new with either of them. 

The only reason I keep getting these doctors on board is so that when I go in for Ansley's first IEP in a few months, I'll hopefully have all my "ducks" in a row!  I've heard so many horror stories on this site about schools and services (including yours) that I wanted to have several doctors' opinions to back me up when we ask for services. It would seem like it would be harder for them to discredit or go against  a "team" of doctors and professionals than just one opinion. Maybe it will help and maybe it won't (it sounds like in your case it hasn't)  - but it's worth a try!  

That was great info! It really spelled things out nicer than some other sites I've checked into. I've read the DSM IV criteria before but that gave many more explanations and examples. Thanks for this! I am printing it to look over before the eval on Wed.

Amber

I had the hardest time the other night trying to explain to my mom how Jake is autistic but doesn't have autism.  I ended up making the analogy that a spectrum disease is like a scale from one to ten and Jake was around 4.  Then she asked my husband "did the doctor give Jake a number between one and ten?" He couldn't believe it. 
 

Amy, you explanation is what I have learned. PDD and asd is the same spectrum or umbrella dx. There are 5 individuial dx.. I wonder if a Dr dx's mild autism / PDD-NOS, does that mean they couldnt decide? When you look at the criteria- the child either meets it or doesnt. It is my understanding that the dx of PDD-NOS is given by exclusion- the child did not meet the standards for the other dx's.

Then throw into the mix that Ped Neuros have some unique lingo to their field. I was hysterical when the PEd Neuro dx Pooh with epileptic aphasia, static encephalopathy on an infantile autistic spectrum. Then the Ped told me that means that the Ped Neuro feels something at some point damaged my son's brain functioning and that epileptic aphasia means my child could talk and lost his words (it doesnt mean he has epilepsy, though I still think he might). All in all she said all those additional dx's mean that my son has autisim and that it presented before age 3, he had regression with the new symptoms of autism.

Defining Autism

Understanding Autism
What is Autism?
- Pervasive Development Disorders
Diagnosis & Consultation
Treatment
Education
Living with Autism


Autism is a complex developmental disability that typically appears during the first three years of life and is the result of a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. One should keep in mind however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees - this is why early diagnosis is so crucial. By learning the signs, a child can begin benefiting from one of the many specialized intervention programs (see treatment and education).

Learn more about:
About PDDTop    
 

Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

The five disorders under PDD are:
  • Autistic Disorder
  • Asperger's Disorder
  • Childhood Disintegrative Disorder (CDD)
  • Rett's Disorder
  • PDD-Not Otherwise Specified (PDD-NOS)
Each of these disorders has specific diagnostic criteria which been outlined in the American Psychiatric Association's Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Prevalence of Autism
Autism is the most common of the Pervasive Developmental Disorders, affecting an estimated 1 in 166 births (Centers for Disease Control Prevention, 2004). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism. And this number is on the rise.

Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.

Autism knows no racial, ethnic, social boundaries, family income, lifestyle, or educational levels and can affect any family, and any child.

And although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls.



Learn the SignsTop
 
As mentioned previously, autism is a spectrum disorder, and although it is defined by a certain set of behaviors, children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Two children, both with the same diagnosis, can act completely different from one another and have varying capabilities.

You may hear different terms used to describe children within this spectrum, such as autistic-like, autistic tendencies, autism spectrum, high-functioning or low-functioning autism, more-abled or less-abled; but more important than the term used to describe autism is understanding that whatever the diagnosis, children with autism can learn and function normally and show improvement with appropriate treatment and education.

Every person with autism is an individual, and like all individuals, has a unique personality and combination of characteristics. Some individuals mildly affected may exhibit only slight delays in language and greater challenges with social interactions. They may have difficulty initiating and/or maintaining a conversation. Their communication is often described as talking at others instead of to them. (For example, monologue on a favorite subject that continues despite attempts by others to interject comments).

People with autism also process and respond to information in unique ways. In some cases, aggressive and/or self-injurious behavior may be present. Persons with autism may also exhibit some of the following traits:
  • Insistence on sameness; resistance to change
  • Difficulty in expressing needs, using gestures or pointing instead of words
  • Repeating words or phrases in place of normal, responsive language
  • Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others
  • Preference to being alone; aloof manner
  • Tantrums
  • Difficulty in mixing with others
  • Not wanting to cuddle or be cuddled
  • Little or no eye contact
  • Unresponsive to normal teaching methods
  • Sustained odd play
  • Spinning objects
  • Obsessive attachment to objects
  • Apparent over-sensitivity or under-sensitivity to pain
  • No real fears of danger
  • Noticeable physical over-activity or extreme under-activity
  • Uneven gross/fine motor skills
  • Non responsive to verbal cues; acts as if deaf, although hearing tests in normal range.
For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our sense of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach's skin, its sweet smell, and the juices running down your face. For children with autism, sensory integration problems are common, which may throw their senses off they may be over or under active. The fuzz on the peach may actually be experienced as painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors, like the ones listed above, are actually a result of sensory integration difficulties.

There are also many myths and misconceptions about autism. Contrary to popular belief, many autistic children do make eye contact; it just may be less often or different from a non-autistic child. Many children with autism can develop good functional language and others can develop some type of communication skills, such as sign language or use of pictures. Children do not "outgrow" autism but symptoms may lessen as the child develops and receives treatment.

One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children, they can and do give affection. However, it may require patience on the parents' part to accept and give love in the child's terms.


Theories on CausesTop
 
There is no known single cause for autism, but it is generally accepted by the medical community that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in autistic versus non-autistic children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. While no one gene has been identified as causing autism, in many families there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. Researchers are searching for irregular segments of genetic code that autistic children may have inherited. It also appears that some children are born with a higher susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop.

Researchers are also investigating the possibility that, under certain conditions, a cluster of unstable genes may interfere with brain development, resulting in autism. Still other researchers are investigating problems during pregnancy or delivery, as well as environmental factors such as viral infections, metabolic imbalances, and exposure to environmental chemicals.

Autism tends to occur more frequently than expected among individuals who have certain medical conditions, including Fragile X syndrome, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). Some harmful substances ingested during pregnancy have also been associated with an increased risk of autism. Early in 2002, The Agency for Toxic Substances and Disease Registry (ATSDR) prepared a review of hazardous chemical exposures and autism and found no compelling evidence for an association. However, there was very limited research and more needs to be done to rule out chemicals.

The question regarding a relationship between vaccines and autism continues to be debated. In 2001, an investigation by a committee of the Institute of Medicine concluded that the "evidence favors rejection of a causal relationship.... between MMR vaccines and autistic spectrum disorders (ASD)." The committee however, acknowledged that "they could not rule out" the possibility that the MMR vaccine could contribute to ASD in a small number of children. While other researchers agree the data does not support a link between the MMR and autism, they also agree more research is clearly needed.

Whatever the cause, it is clear that children with autism and PDD are born with the disorder or born with the potential to develop it. Bad parenting does not cause it. It is not a mental illness. Children with autism are not unruly kids who choose not to behave. Furthermore, no known psychological factors in the development of a child have been shown to cause autism.






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Great post Jean! 

I think this is the reason it is so hard for some to accept and come to terms with our childrens' dx sometimes - b/c the cases do present so differently from one child to another.  And even though we have the DSM-IV standard, each doctor interprets it differently and then has different reasons for handing out one diagnosis or another.  This causes it to still be a fairly "vague" diagnosis. Unlike other childhood diseases/disabilities that have definite symptoms and physical evidence that you can test for.

I think you're right about the fact that a dx doesn't really change anything, it just helps us to better understand what's going on with our precious little ones so we can help them better.  I still think some doctors shy away from the dx autism b/c parents would prefer not to have the "label" so they go with PDD-NOS.  I personally know of at least one mother where this is the case.

Amy, I so WANTED Pooh to have PDD-NOS....Now that I look back on it I dont know why. It seemed less 'severe' than autism?????? But in reality, PDD / ASD is a lifelong neurological challange and they are all apples, just perhaps different varieties (Boy that is a poor analagy, but hey its the best I can do). The Dr that dx my son told me that she did not dx according to how he acted that day (though they did certainly assess and assess, and she did not dx according to what he did on his very, very best or his very, very worst, she was developing a history and evaluation that showed what my son did the most, what was his average, his 'normal'. and when she did that, she and all the other team members decided that the best choice for a dx was autism. The Ped Neuro told me that it was his opinion that SOMETHING is amiss in an ASD persons brain chemistry, something happened or is continuing to happen (be it mercury in addition to a predisposition or something we dont know about at this point). He talked to me for a long time about the seretonin levels in asd children and how he thinks that is the cause for most children not to talk. He also talked to me for a long time about head size (my childs head is very large) I dunno, but I almost always have accepted that my son is special, very unique in his needs and I ALWAYS know that I am blessed to have him.......Thanks for listening to me ramble, I am sure a few probably died from boredom several sentences up in this horribly long post.Jean38618.3200462963

(((((((JEAN))))))))))

AJ was diagnosed at Kern Regional Center in Bakersfield.  They said PPD-NOS  to mildly autistic.  He is in a school where the teacher specializes in his disorder.  However, AJ needs 1:1 for ALL his needs.  That is why I am fighting the school district.  Also, the school didn't even evaluate him at all last year.  So how the heck would they know how much of this and that he needs...and exactly "what" he "needs" 

 

Then you are where I am (more or less) My Pooh was dx 02/17/04 and thus far all his assessments have been the ones he received before he turned 3. The school has done no testing at all. The really sad thing is, Pooh did NOThave behaviors when he received in home therapy (well, let me rephrase that, Pooh did not resist therapy to the part of hurting himself and others BEFORE we lost in home therapy). Last year I requested evaluation (not done) this year I will have to demand it. He simply is NOT going to goto school until he has a behavioral and sensory plan added to his IEP.

 Okay, I'm confused with how these different docs label the dx...I know treatment is what is most important but the standard seems clear enough, why can't they all decide on a "standard" for what they call things?  And then you throw in the 2 cents worth from the school system "specialists" you guys have dealt with and it gets really muddy!

 I was under the impression that Pervasive Developmental Delay (PDD) was an umbrella term for any delays which included autism spectrum disorder.  And that PDD-NOS (Not otherwise specified) was an ASD in which the child meets some but not ALL the criteria on the standard DSM-IV.  So, PDD-NOS is a PDD but is a separate dx under the "umbrella" of PDD. For ex:  Ansleys dx was PDD/ Mild autism with mild encephalopothy (which basically means any damage or disease relating to the brain - this was added in attempt to help w/ insurance coverage).  The PDD is the umbrella under which the dx of autism falls and she is right now determined to be on the mild end b/c she has some but not as MANY of the behaviors from section 3 as she does from the first 2 sections. If a child does not present with enough symptoms from all 3 sections, then they use the label PDD-NOS.  This is a great translation of the DSM-IV, and it seems simple enough - why do the docs use so much dif. terminology? 

Also, I thought children could also have general PDD due to other medical/neurological problems and not be on the spectrum.

Screeech - When they say PDD-NOS to mildly autistic, do they mean that he does not meet standard reqs for autism, but has autistic "tendencies"?  I think that would be true of any child with a PDD-NOS dx.  I know all this really doesn't make much of a difference - a dx doesn't change our child - I'm just curious about all the variances in terminology.  It can make you do this...!

amyleigh38614.2048263889

HAHA. I like that 1-10 thing. I think it won't be quite so hard for some of my family to accept or even understand if ds is dx'd, but dh's family...that's a WHOLE other bridge to cross. They pretty much think I'm being quacky and any dr that might dx ds is being quacky too lol. "Dr's nowadays dx anyone w/ anything to make the parents happy." Yes I WANT my ds to not be normal. That will make my life better because....? Not like any of them really even see ds more than once a mth or so to say that he's fine or not. Ok that family do's and don't's paper is REALLY going to come in handy if ds is dx'd.

Amber

 

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