Volume 6; Issue 2                                                                        July 20, 2002

Hi everyone!

One of the topics that comes up regularly in chat, through emails and on our message board is the experience of confusing diagnoses.  Top offenders on this list include PDD, ASD, high functioning autism, Asperger’s Syndrome and PDD-NOS.  Once you have an understanding on autism spectrum disorders, you can sort it out, but most of us are unfamiliar with autism when we get that first assessment.  When the assessing clinician asks us if we have any questions, we don’t know what questions to ask based on our inexperience so (in most cases; frozen with numbness) we say ‘no’.  It is then assumed that we understand the whole thing and we are sent on our merry way.

When we get home, confusion sets in.  Does my son/daughter have autism or PDD?  Are they different? Is one milder than the other? If my child is diagnosed with Asperger’s syndrome, does that mean s/he is better off?  What is the difference between autism, high functioning autism and Asperger’s syndrome? And where does this PDD-NOS fit in to the whole thing? It is really hard to move forward if you can’t get an accurate understanding of the diagnosis.

So we start to read, to question others, to go on the Internet and then we find that the information confuses us even more!  As we read articles written on the subject by professionals, we see that even they are not consistent.  Find one definition that makes sense, and there will be six professionals refuting it. You can tell by reading our message board that our children’s doctors don’t always agree. The more I read on the subject, the more I start to wonder who really knows the answers. 

The information in ASD, PDD, PDD-NOS, AND MORE  is based on the DSM-IV and other reputable publications on ASD and we have cited these in the reference section.  We have included a section called “The DSM-IV in English” and this is our attempt to clarify by using examples and everyday terms.  It was not written by a physician.

We are also featuring some reader contributions of personal experiences from parents, which help to illustrate this topic.

An announcement:  To those of you who’ve been asking at our workshops, Dana’s site is now available in book form and you can check it out here.

In a side note, I would love to thank all who contributed to our anniversary issue.  It was such a wonderful surprise during a challenging period of our lives.  My unending gratitude goes to Michelle E. for putting it all together – I had tears in my eyes reading the notes from our subscribers.  I would also like to thank those who sent personal notes of congratulations, and those who posted them on our message board. Your thoughts and ideas are really what make the E-News unique and successful!

Bee Cool,

Liz

ASD, PDD, PDD-NOS AND MORE

Autism Spectrum Disorder (ASD) is a behaviorally defined life-long disorder of higher cortical function, with onset in early childhood that affects sociability, language and communication, play, and range of interests and activities. Its severity is very variable, so that it is appropriate to speak of the autistic spectrum (referred to as pervasive developmental disorder or PDD in the Diagnostic and Statistical Manual of Mental Disorders - DSM IV) to encompass all cases, from the most severe to those with mild autistic traits. Simply put, ASD is an umbrella term for a group of disorders characterized by the delayed development of socialization and communication skills. PDD means the same thing as ASD. Neither PDD or ASD are diagnoses unto themselves.

Under the ASD/PDD "umbrella" or spectrum, you will find autism, Asperger syndrome, Rett syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder-Not Otherwise Specified. This group appears together under the heading Pervasive Developmental Disorders in the DSM-IV, otherwise known as the Diagnostic and Statistical Manual, 4th Edition, (©1994, American Psychiatric Association), one of the tools used in diagnosing the PDDs/ASDs.

PDD-NOS is a diagnosis given when the criteria for autism (per the DSM-IV) is not met.  Please see our section ‘DSM-IV in English” for a description.

'PDD' is not:

'PDD' should:

Many parents and professionals prefer the acronym ASD as opposed to PDD because they feel it is more descriptive and recognizable.

Under the Umbrella
Asperger syndrome (AS)

There is some question as to whether AS belongs in the autism spectrum.  Some clinicians, researchers and parents consider AS separate from autism, others consider it a variation of autism. It’s not clear whether its underlying biology is different and, if so, how. Children with AS appear to be preoccupied with their own narrow interests and routines. AS is more common in boys and often goes undetected until after the age of 3. AS is often characterized by: (below is a list of characteristics only, this is not a diagnostic tool)  

Children with AS can generally function better than those with other forms of autism spectrum disorder and are less likely to require life-long care. Though even if they do learn to function independently, their social interactions are nonetheless impaired and they are often prone to anxiety due to their recognition of their 'differentness'.

Autism (also known as Classical or Kanner’s Autism) AND Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)

The best way to describe PDD-NOS uses the DSM-IV criteria for diagnosing autism, so we’ve grouped these two together.  While autism has a set of guidelines to follow from the DSM-IV, some children don't quite meet the criteria (criteria refers to "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)" read about it here. )

A child with a diagnosis of PDD-NOS might have a different configuration of the criteria than that, which fits autism.  Although this doesn't necessarily mean a diagnosis of PDD-NOS is less severe than one with autism, many clinicians tend to simplify the diagnosis by telling parents this.  It is important to have a full written report of your child's assessment in order to understand the severity and gaps in development for teaching purposes. Severity and behaviors can play an important role in securing services and funding for your child.

Characteristics of children with autism or PDD-NOS include; (below is a list of characteristics only, this is not a diagnostic tool)  

Children with autism and PDD-NOS vary in their abilities and level of functioning. Children can often benefit from one-on-one, individualized attention, behavioral intervention and instruction. Behavioral problems can sometimes be managed with medication. Bio-medical treatments can also be helpful.

It is extremely important to note that no two children with ASD/PDD present the same; even two with exactly the same diagnosis!  In the same token, no one therapy works well for all children with ASD/PDD. Our kids are individuals and it’s important to keep that in mind when seeking interventions or planning teaching programs.

Rett Syndrome
Even though Rett syndrome has been recognized as a distinct disorder for over 40 years, neither its etiology nor treatment are very well understood. It is a progressive neurological disorder characterized by: (below is a list of characteristics only, this is not a diagnostic tool)  

Other symptoms may include:

According to the National Institute of Neurological Disorders and Stroke, Rett syndrome affects 1 in every 10,000-15,000 female newborns with symptoms usually beginning between 6 and 18 months. Because Rett syndrome only occurs in females, it’s believed to have a genetic basis. There is no cure, but there are several things that can be done to manage the symptoms. Orthopedic and learning disabilities, as well as seizures, can be managed with appropriate treatment, and a special diet may be necessary to maintain a healthy weight. Most people with Rett syndrome live at least into their 40’s. Death is usually a sudden, unexplained event, presumably due to some sort of brain dysfunction.

Childhood Disintegrative Disorder (CDD)

This rather rare condition was described many years before autism (Heller, 1908) but has only recently been 'officially' recognized.  With CDD children develop a condition, which resembles autism but only after a relatively prolonged period (usually 2 to 4 years) of clearly normal development (Volkmar, 1994). This condition apparently differs from autism in the pattern of onset, course, and outcome (Volkmar, 1994). Although apparently rare the condition probably has frequently been incorrectly diagnosed.  Research is currently being conducted through the Developmental Disabilities Clinic at Yale. (3)

The condition develops in children who have previously seemed perfectly ‘normal’. Typically language, interest in the social environment, and often toileting and self-care abilities are lost, and there may be a general loss of interest in the environment. The child usually comes to look very 'autistic', i.e., the clinical presentation (but not the history) is then typical of a child with autism.

Getting a Diagnosis
Autism Spectrum Disorders (ASDs) are most often diagnosed between the ages of 2 and 3*; although they can be detected earlier.  Some children with ASDs present clear symptoms from birth; but some clinicians hesitate to diagnose too early.  There really is no reason for this.  A child can benefit from therapies early on, and the quicker interventions start, the general thinking is that the outcome will be more positive.  About 1/3 of children with an ASD appear to develop typically at first, with a regression in their social and communication skills occurring at a mean age of 21 months. (2)

*Exceptions to the rule of early diagnosis could be that your child's symptoms are very mild, s/he has AS (usually diagnosed later) or there is a co-existing disorder muddying the diagnostic waters.  If, for example, your child has Down syndrome, it can be more of a challenge to diagnose an ASD as well.

References:

1.       Diagnostic and Statistical Manual, 4th Edition, (©1994, American Psychiatric Association)

3. Yale Child Study Center

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

 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:

(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:

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

Examples:

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

Examples:  

(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:

(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:

(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:

(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:

(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:

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 CONFUSING DIAGNOSIS?

By Becca

I researched PDD-NOS according to the DSM criteria before I talked with doctors concerning M's possible diagnosis. Probably because of my psychology training but I have tendency to turn here first.

Many opinions abound in many different books and/or people like doctors or say a next-door neighbor even so it can get very confusing. And doctors, bless them, have such a terrible time explaining themselves in our language.

I've always understood PDD-NOS to be some but not all criteria for a diagnosis of Autism. Nor is this "some" necessarily mild or moderate although it can be. Some of these symptoms can in fact be more severe than a child suffering from all of the classic symptoms of Autism.

PDD-NOS is not necessarily a progression in a child becoming less severe on a continuum of say Autism - PDD-NOS - Aspergers. It is a way to diagnosis more appropriately those children both mild and severe who in the past would have been excluded from the Autistic Spectrum.  

By Liz
When parents receive that first diagnosis, it is unlikely they are familiar with autism or PDD. Thus, when we got these string of results, we were completely confused and it actually took us 6 months to sort it out.

Here's what happened with us:

May '97 - Audiologist - diagnosis: 'some kind of developmental delay'.
They never explained what this meant. The word 'delay' confused me. I thought it meant he was behind but would catch up naturally.

July '97 - Developmental Pediatrician - diagnosis: 'mild PDD'.
Although this doctor tried to explain what PDD was in relation to autism, it was the first I'd heard of it. I knew I was being given bad news but couldn't absorb it, and the information given couldn't penetrate the sudden grief. In retrospect, I am not sure where the ‘mild’ came from.

August '97 - Pediatric Neurologist - diagnosis: 'good looking boy with a speech delay'.
This very nice man stared at my son for 15 minutes and said, "I don't think he has autism." We felt such blessed relief at the time. In retrospect, J. was so severely affected by autism that I'm appalled he made those comments. Just put us into denial again.

January '98 - Psychologist, working with SLP, OT. - Diagnosis: 'global developmental delay' (GDD)
Autism was not mentioned although they did a good job of explaining what GDD was plus possible prognosis. Several months later, we received the written report and the diagnosis was "GDD with autistic tendencies" - that was never mentioned verbally.

January '98 - Psychologist and psychometrist - diagnosis: 'severe autism, severe developmental delay'.
This team told it like it is and I was thankful. They also gave us direction and some hope. They explained the whole autism/PDD thing in a clear way and empowered us with education.

By Holly

My experience was that the psychologist said that my daughter wasn't autistic; she said that she has PDD-NOS. All she said that it is pervasive developmental disorder not otherwise specified. She said that she did not qualify for the Autistic Disorder or Aspergers. She didn't explain to me exactly what PDD-NOS was.

After reading everything that I can get my hands on about PDD-NOS, I really got confused by the PDD and the PDD-NOS label. PDD as stated by a lot of publications and websites is not a diagnosis or a label. PDD-NOS is an actual diagnosis. Then on other sites they state that PDD is the same thing as PDD-NOS. Okay I thought I just read that PDD is not an actual diagnoses or label but PDD-NOS was. At other times I read that PDD-NOS is not Autism at all and not even on the Autistic Spectrum. Now about 95% of the articles and books I have read states that PDD-NOS is on the Autistic Spectrum.

Now to my understanding, PDD-NOS is between Mild Autism and Aspergers. But then again I have been told that PDD-NOS is the same thing as High Functioning Autism and Mild Autism. HuH???????

See what a confusing time I had with the label PDD-NOS. Isn't that ridiculous???

Now I view PDD-NOS as the same thing as High Functioning Autism Or Mild Autism. Why?? Because it makes the most sense to me.

Holly’s timeline:

December 2001 - Speech evaluation: my daughter is severely delayed in speech, receptive, expressive and comprehension.

Developmental evaluation: fine motor delay, and overall delay in development by 19 months.

January 2002 - Speech therapist questioned if my daughter could have autism. Questioned if she also has CAPD or Communication disorder.

Developmental therapist states that there is more to my daughter’s problems than development.

(these two therapists were very concerned and worried that she may have more serious problems such as a learning disorder and autism)

Requested a Psychological evaluation:
March 2002: diagnoses of PDD-NOS

March 2002:
New developmental therapist: possible SID, not sure of autism.

June 2002: Speech therapist says that she feels that she has Aspergers vs. PDD-NOS. She said that the PDD-NOS didn't make any sense to her.

Diagnoses may change along the Autism spectrum. The new psychologist said that my daughter is on the spectrum but not sure where yet. Testing is next Thursday and we will find out next Friday (the day after testing). 

By Kim

When we went for Genetics Counseling a while ago, he kept alluding to the fact that we didn't have a diagnosis. When I finally got him to explain, his answer was that Autism is not a diagnosis, but rather a description of symptoms. It is not a diagnosis, because he doesn't know what caused the autistic symptoms to appear.

Just thought I'd throw another wrench in the works. Nothing's black and white here is it? 

By Lucy

My understanding is that PDD-NOS means that the child doesn't meet all the criteria for autistic disorder (ie a certain number from each of the diagnostic categories) but does fall on the spectrum. I don't think PDD-NOS gives any indication of severity. I think a child can be severely effected with PDD-NOS. JMHO, of course.

As for the high functioning/low-functioning I think that is quite subjective and it's all in how you define 'functioning.' If a child has good verbal skills but isn't potty trained are they considered high functioning or low functioning? If a child is non-verbal but is able to perform all self help skills (ie dressing, brushing teeth, toileting, etc) on their own are they considered high functioning or low functioning?

I don’t know the difference. Personally, I think many doctors aren't exactly clear on where one ends and the other begins. Everything's sort of fuzzy on the spectrum, in my opinion. What's more valuable to me is an accurate assessment of his strengths and weaknesses because that gives us a path forwards - what we can capitalize on and what we need to work on. Whether his actual label is autism disorder or PDD-NOS isn't that important to me right now. As long as he has a label and can get services based on his needs then that's what really matters to me

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WELCOME TO THE ZOO
Regular Feature by Columnist Michelle E.

My Thoughts on ASD, PDD, and PDD-NOS Labels

When B was first diagnosed, we took him to a pediatrician that did not mince words with us. He told us right out -- Your son has a developmental disability and I believe he is Autistic. We were devastated and I hated that doctor and thought he was a jerk.  How could he tell that he had autism -- all B did was run in circles around his office.

Since I didn't believe him, I took B to about 4 other pediatricians and they all said different things from “NAH he isn't autistic” to "he has some traits of PDD-NOS" to "he might just be a late talker." I figured PDD had to be better then Autism so I went with that diagnosis and figured the old battle-axe doctor we first went to was just OUT OF HIS MIND.

Nobody told me what PDD-NOS was -- and I didn't have access to the Internet. So, for a long time -- I just figured out that PDD had to be what he had because Autism was OUT OF THE QUESTION.

I even prayed to God that if B had PDD instead of autism I would do something for the Autistic Community. I am doing a lot for the Autistic community now and my son is still Autistic. (Go Figure)

Anyway, over the years I have been in and out of denial -- and finally after getting onto BBB a couple of years ago -- I realized that it is the same thing.

I even tried to get my pediatric neurologist to give B a diagnosis of Aspergers a couple of years ago and he said, “You can call it what ever you want – it’s still High functioning Autism.”

Then I read from somewhere that Tony Attwood said, "The only difference between High functioning Autism and Aspergers is the way it is spelled.

After that -- I stopped trying to get away from the autism label. At this point I don't care -- as long as B keeps improving.

As for the different labels -- I think the doctors are doing the wrong thing by giving them a diagnosis of PDD or PDD-NOS. Either way, the therapy is the same, and with the autism label you will get more services. And it keeps the parents (like me) in denial much longer which could keep the parents from getting the child help sooner.

I don't think the ASD label is bad -- because it still means that the child is somewhere on the spectrum. My son B was considered severe at age 2 and 3 and now he shows very few signs and is in regular 3rd grade starting this fall.

Is he still Autistic???  YES -- he will always have the Autism -- I believe. But will he be productive someday??? I sure hope so. Will he get married -- I sure hope he can find someone who doesn't mind his quirks -- But as long as he is happy -- that is what is important to me.

E-NEWS BITES:

1.       “AUTISM FRIENDS: Come check out our 800+ links, Shopping section fundraisers for parent run sites coming soon!)  Family pages and our Community section for chats 5 days a week!  Coming soon to Autism Friends! Parent tips, ponderings and wisdom!

Autism Friends is a Member supported website run by a parent. We are always looking for parent contributions! Book recommendations, photos, best links, personal stories, poems & artwork by our creative geniuses. Contact Tina at: founder@autismfriends.com. Tina”

2.       "My name is Susan Rosenstein and I am an occupational therapist with Early Intervention Services, the Richmond Hill-Thornhill team. I am involved with the design team in planning for the new All Our Children Playpark, which is being built by the community, for the community, in Newmarket in August 2002.

We have attempted to include equipment and provide spacing, which will allow for best possible use by children of all abilities.

I am frequently told by parents that it is so very difficult to take their child, who is unaware of risks or does not follow directions, to public playgrounds as most are open to roads, ravines, the river, etc.

I am looking for any information about safety strategies in fencing and or design, which will allow children to enjoy the playground without the worry, or r