Autism and Pervasive Developmental Disorders

THE FOLLOWING DESCRIPTION IS A BASIC BREAK-DOWN OF ASD/PDD IN TERMS OF THE DIAGNOSTIC AND STATISTICAL MANUAL.  THIS DESCRIPTION IS NOT PROVIDED BY BIG SKY, BUT RATHER FEAT.ORG, AND IS APPROPRIATE FOR A BASIC PRIMER INTO THE WORLD OF ASD/PDD UNDERSTANDING.

THE ONLY THING NOT MENTIONED IS THE CHANGES MADE IN THE DSM-IV TR (2000) IN WHICH GREATER CARE HAS BEEN TAKEN TO GIVE MUCH MORE DETAILED DIAGNOSTIC CRITERIA AND CO-MORBIDITY DESCRIPTIVES FOR 20 CHILDHOOD PSYCHOLOGICAL DIFFERENCES THAT THE DSM TERM AS "DISORDERS".  THE DESCRIPTION BELOW ONLY REFERS TO DSM EDITIONS PRIOR TO THE "TR" VERSION, THUS THERE IS NOW MORE DIAGNOSTIC REFERENCE FROM WHICH TO GAIN UNDERSTANDING BEYOND WHAT IS DESCRIBED BELOW. 

WE PERFORM DIAGNOSTIC RESEARCH / BEHAVIORAL SCIENCE LITERATURE REVIEW AND WE ARE HAPPY TO ANSWER ANY QUESTIONS YOU MAY HAVE REGARDING THE MOST UP TO DATE DIAGNOSTIC CRITERIA UNDER THE CURRENT DSM-IV TR.   FURTHER, IT SHOULD BE SAID THAT ALTHOUGH THE DSM IS THE MOST WIDELY USED FORM OF DIAGNOSIS IN THE U.S., IT IS NOT THE MOST ACCURATE OR APPROPRIATE.  DIMENSIONAL (EMPIRICAL) DIAGNOSTIC PROCEDURES ARE FAR MORE COMPREHENSIVE AND APPROPRIATE FOR CHILDREN, ESPECIALLY FOR CHILDREN WITH SUSPECTED ASD/PDD. 

PLEASE SEE THE ASD/PDD DESCRIPTION BELOW (PROVIDED BY MEMBERS OF FEAT.ORG) AND READ FURTHER BEYOND THAT TO SEE A LETTER FROM THE DIRECTOR OF BIG SKY. 

“Autistic Disorder.” “PDD.” “Asperger’s Syndrome.” “Infantile Autism.” These are just a few of the many labels commonly seen and sometimes misused in the world of autism and its related developmental disorders. Some of these labels are actual diagnostic labels, while others are “unofficial” or “popular” terms with less precise definitions.
 
As a parent, this myriad of labels can cause a great deal of confusion. Do labels such as “autism,” “infantile autism” and “autistic disorder” refer to the same disorder? Are there nuances that differentiate one disorder from another? How does a label of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) relate to autism? Should the treatment and education of a child with a diagnosis of PDD-NOS be any different from that of a child diagnosed with autistic disorder?

The common practice of ranking children as "mildly," "moderately" or "severely" autistic is also confusing. Does the severity have implications for treatments and outcomes? These are the type of questions that need to be answered in your quest for information and help for your child.
Diagnostic Categories. Though it can make for somewhat intimidating reading, the essential place to start untangling this web of labels and terms is in the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV; 1994). Qualified diagnosticians use the DSM-IV guidelines when diagnosing children. The DSM-IV describes a class of disorders, called "Pervasive Developmental Disorders" (PDD), under which there are five diagnostic categories:

Autistic Disorder
Asperger’s Disorder
Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)
Childhood Disintegrative Disorder
Rett’s Syndrome

Note that there is no such thing as a singular diagnosis of "PDD." This has been a source of great confusion, as the label PDD is regularly discussed and applied to children. But, in fact, PDD is simply the umbrella under which the five disorders listed above fall.
A Better Way of Thinking. It is helpful to understand the relationship of the five disorders to one another. In a 1997 report sponsored by the California Departments of Education and Developmental Services, which looked at best practices in the field of autism, the authors used the term “autistic spectrum disorders” (also referred to as "autism spectrum disorders or "ASD") to refer to the five disorders classified in DSM-IV:

“The term ”spectrum,” used in the context of ASD, suggests a range of related qualities or activities.... Autistic spectrum disorders implies a class of related developmental disorders that overlap but are clinically distinct and separately diagnosed. These disorders overlap in the sense that a portion of their clinical features are shared.... The assumption is that with careful assessment the PDDs can be differentially diagnosed.” (from Best Practices for Designing and Delivering Effective Programs for Individuals with Autistic Spectrum Disorders, page 17)

The term ASD makes it clear that the five Pervasive Developmental Disorders share important similarities, despite some differences in the areas affected (e.g., language, cognitive, etc.) or the relative degree of impairment (e.g. mild to severe). For instance, one important “common denominator” among the PDDs is the presence of a significant disturbance in the child’s ability to relate to others. This disturbance, which may be present in varying levels of severity, has important implications for the child’s ability to learn from the environment.

DIAGNOSTIC CRITERIA. The following are the diagnostic criteria for Autistic Disorder, Asperger’s Disorder and Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS), as taken from the DSM-IV. Both Rett’s Syndrome and Childhood Disintegrative Disorder are very rare and will not be discussed here. The diagnostic criteria provide a roadmap to understanding the similarities and differences among these three ASDs.  

Autistic Disorder. Autistic Disorder has been referred to simply as “autism,” “classical autism,” “infantile autism” and “Kanner’s autism.” All are one in the same. There are no formal diagnostic categories for the popular terms “mild,” “moderate,” and “severe” autism. Rather, these terms probably have their origins in a widely used diagnostic assessment tool called the Childhood Autism Rating Scale (CARS) that does divide children into the two categories “mild-to-moderate” and “severe.” Many children who are initially categorized as being “severely” affected by autism, become only “mildly” so after appropriate treatment.

There is also no diagnostic category, and no commonly accepted definition, for the label “high functioning” autism. It is sometimes associated with those children who rank in the “mild-to-moderate” range on the CARS test, or who have autism unaccompanied by mental retardation. This vague "high functioning" label draws its meaning, presumably, by being contrasted with the label “low functioning." Like "high functioning autism," "low functioning autismi" has no concrete definition. The term is offensive to many parents since it can be very damaging to the children labeled with it. That's because "low functioning" too often connotes “low expectations," which can become a self-fulfilling prophecy when children are denied effective treatment based on “low expectations." Unfortunately, even the Autism Society of America contributes to this confusion regarding “high vs. low functioning" by using these terms in their information materials.  

The following are the diagnostic criteria for Autistic Disorder:
 
A.  A total of six (or more) items from sections 1, 2, and 3, with at least two from section 1, and one each from sections 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, 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 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, 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, onset prior to age three years:

1) Social interaction;
2) Language as used in social communication;
3) Symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder. If the criteria for Autistic Disorder are not met and the child has autistic features, the PDD-NOS diagnostic label can be used.

Asperger’s Disorder. Asperger’s Disorder is also often referred to as Asperger’s Syndrome. Children with Asperger’s Disorder are sometimes mislabeled as having “high functioning” autism, because their language and cognitive skills are generally better than children with Autistic Disorder. This exemplifies the problem with the very imprecise term “high functioning autism,” since it is often used to describe individuals from two entirely separate diagnostic categories.  

According to the Handbook of Autism and Pervasive Developmental Disorders (Edited by Donald J. Cohen and Fred R. Volkmar, 1997, p. 113), Asperger's Disorder differs from Autistic Disorder and PDD-NOS in that "the onset is usually later and the outcome is more positive. In addition, social and communication deficits are less severe, motor mannerisms are usually absent, and circumscribed interest is more conspicuous. Motor 'clumsiness' is more frequently seen…and family history of similar problems is more frequently ascertained…" The following are the diagnostic criteria for Asperger’s Disorder:  

A. 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) 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) a lack of social or emotional reciprocity.

B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least 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, non-functional 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 general 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.  
 
Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS). PDD-NOS is often incorrectly referred to as simply “PDD” and sometimes as “atypical” autism. In some respects, PDD-NOS is a "default" diagnosis, to be applied where a child fails to meet full diagnostic criteria for one of the other pervasive developmental disorders. According to the Handbook of Autism and Pervasive Developmental Disorders (cited above,. page 128) it can be difficult to reliably distinguish PDD-NOS from autistic disorder or Asperger's Disorder . "Current criteria offer little direction or guidance for separating PDD-NOS from Asperger's syndrome…determining whether an individual has autism or PDD-NOS can be most perplexing…The absence of measurable standards and of specific cut points that define the levels of impairment within domains is particularly problematic."
 
The following are the diagnostic criteria for PDD-NOS:

This 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. 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, subthreshold symptomatology, or all of these.  
 

Letter From The Director of Big Sky...

About Our Philosophy and The Director's Personal Experience as a Parent of a Fabulously Autistic Person and as a 17 year veteran educator and advocate for the autistic community. 

There are various advocacy programs and websites that are wonderful in their efforts. However, with a few of these advocacy organizations, we at Big Sky  take issue with the view that autism and its related pervasive developmental disorders are conditions that need a cure...Autism is not a disease, autism is a name for the manifestation of how the brain has formed (in autistic individuals) and how the brain adapts and responds to stimuli (in a "different" manner than typically formed brains found in so called, normal individuals).

While we do support any research and therapeutic treatment that proves itself to be safe and sincerely beneficial to an autistic individual's emotional, cognitive, and physical development, there are movements for treatments that have also been proven to be harmful in certain cases. Further, it is of grave concern, that some organizations and/or "treatment centers", promise extraordinary outcomes for extraordinary fees. There are great therapeutic programs and for some, extensive medical intervention and medications are included in those positive therapeutic treatments. We, again - however stress, that although Autism is a great challenge, it is just that, a challenge - not a disease to fear or loathe.

While there are wonderful discoveries and potential treatment options coming of age via isolation of specific genes and neurochemical agents, and those treatments may one day be of enormous physical , emotional, and cognitive benefit... I, as the founder of Big Sky and as a mother of a child living with PDD, am very careful to not devote all energy in chasing a "cure" for a very specific reason : If I were to say that I would want a cure for my son's autism would be for me to say, to some relative degree, that I don't accept my son's differences, that somehow, he is not good enough as he is...   Yes, there are plenty of traits that my son has that could stand to be modified, however.....Toni's brain and the way he utilizes it, is a large part of who my son is - he and autism are connected and he has learned (and continues to learn) the positive aspects and tools within his autism...to take that away by chasing a cure would possibly bring about just as many consequences as it would bring possible relief.   To be sure, there are many individuals with severe forms of autism with compounding comorbidity of disorders - and for many of these individuals, a "cure" is sought in terms of alleviating pain, suffering, and is aimed at prevention of further pain and suffering.   We at Big Sky understand and support the personal viewpoints and decisions made by families to view and treat their family's experience of autism in their own personalized manner.   This adventure is indeed a very personal one - there is no room for judgement - only room for support, compassion, and active partnership in the ways we are best able.  

The ultimate power must be handed back to the so-called disabled who we choose to call "differently abled". (And for those who are not able to decide for themselves, responsible advocacy must take that stance with the most compassionate and ethical position possible).

We do encourage all family and friends of the autistic community to actively strive for the encouragement and raising of the bar for skills enhancement and behavioral/emotional growth - I am a researcher, educator, and scientist and I am most definitely of the mind to always search out the most therapeutic avenues for all in the autistic community - I will, however, always disagree with the view that autism is a monster that we should fear and defeat - Autism is a state of mind with many tears and many joys and each family must treat the condition as they see fit in the most positive manner possible.

We support and applaud all of "us", the autistic community, in "our" amazing adventure... Let us all remember and acknowledge, that there are more gifts in the process than there are obstacles... Point of Perception Is Everything... Make that perspective work for you and the entire autistic community. Thank you for your time and willingness to learn about our endeavors.

Along with my personal experience as a parent of a child with PDD/ASD,  I ironically began my career in special populations education (prior to my son's birth) and began the development of my education and intervention model many years before my beautiful home-version of autism arrived.   Further, I am considered a master consultant in the area of PDD and am glad to answer questions and concerns in relation to autistic spectrum disorders (differences).   Feel free to email me with questions and comments, no matter their level of complexity.    The key to navigating this adventure, is the sharing of our knowledge.   I welcome the contacts if learning will be the result.

Have a most blessed day,

Katherine Ann Roe Sainz, Director of Big Sky Education and Research Centers

katherinesai0354@aol.com